Advice about Autism
Some acronyms used on this page:
- ABA = Applied Behavior Analysis
- AS/ASD = Autistic Spectrum Disorder
- HFA = High Functioning Autism
- IEP = Individualized Education Plan
- NT = Neuro-Typical (not autistic)
- PDD-NOS = Pervasive Developmental Disorder - Not Otherwise Specified
- RC = Regional Center (RCEB = EC East Bay www.rceb.org )
Evaluation for Autism
My son didn't have any words at his 18-month well check and also didn't have all the right boxes checked on the M-CHAT (autism red flags), so we were referred to a speech therapist for an evaluation. By the time we had that visit, about 6 weeks later, he had about 15 words and we thought he was fine, but decided to go anyway. We were shocked to have her tell us he was very delayed and needed to be evaluated at the Regional Center for other issues involving play/social development. After sending paperwork to the Regional Center at the beginning of December, we are still waiting to hear from them. In the meantime (he is now 21 months old), he is using new words every day (including daddy and mama, waving hi and bye), pretends to feed tea to his dolls, has a social laugh, plays with cars like they are cars, etc...basically the stuff we were told he was behind on he seems to be caught up with. I've re-taken the M-CHAT online and it said ''no cause for concern.'' My gut tells me he's a late bloomer, but I know we need to get the evaluation done with the Regional Center to be sure. My question is - can they tell whether a kid is a late bloomer or needs intervention? If he really does have a problem, I know we need to deal with it, but will someone be willing to say he is just off to a slow start? I read developmental charts and he does seem to be behind, but I feel like he's catching up - anyone else go through this? Can a kid can be slower than average to reach milestones and still catch up? He stacks blocks, makes eye contact, points...but he did those things when we saw the speech therapist and she still thought he needed 20-30 hours a week of developmental therapy. Thanks for any advice.
Yes, specialists can tell the difference between autism and late bloomers. I take from your post that you are afraid of the diagnosis. I understand that. Ideally your child would indeed just be a late bloomer. But you can only gain from an evaluation: Either the confirmation that he is fine, just a bit behind, or you get a diagnosis - doesn't have to be autism - and can start intervention. Should there be a need for it, starting intervention earlier rather than later is definitely going to be beneficial for your child. Best wishes
My son who is 19 yrs old was a lot like your toddler, late at everything, no talking until pretty late, very cautious to try new things. He had a speech problem and went to speech therapist until he was 8(from little i remember). There was no doubt by his interactions at that time that he was even a bit of autistic or asperger... I let him be, not pushing him, he grew into a great young man, confident, smart, good student (in college now) anon
Getting your child a diagnosis can only help because the interventions are like a highly-enriched preschool tailored to what your child needs. The testing is like observation and playing games. Many of these problems can be greatly remediated in early childhood because the brain is very flexible, so treatment is very effective; and if he is just a ''late-bloomer'' therapy will only help his language skills. anon
Hi, I'm feeling a little overwhelmed. I am having really gut feelings that my 14 month old boy displays signs of autism. We have a newphew and cousin who have autism, so I am aware of the symptoms. I tried calling early intervention to have him evaluated, but they say they don't evaluate for autism until 18 months. I know early intervention is very important in terms of outcome, and I'm wondering if there are any families out there that were able to get services for their child at a younger age. If I get him evaluated by a developmental pediatrician and get a diagnosis can we start a program through early intervention? I know 14 months is very young and many people will tell me to wait, but I can't just sit back and do nothing when I really feel like something is going on. I'm already looking into dietary changes, adding some basic supplements, homeopathy, and cranial sacral. Thanks in advance for any advice. anon
Yes, you can get a diagnosis before 18 months and it's important so you can start necessary therapies (speech/language, occupational, etc.) The Regional Center can evaluate and provide services before age three years. (After three years, school districts generally take over.) Also, you might try Easter Seals; I know they evaluate kids starting at 14 months. Go with your instincts and don't let anyone dissuade you from demanding early intervention--it's crucial. Not all pediatricians recognize the signs and many advise to wait and see. Not a good idea when early therapies are necessary. Good luck! Mom and professional in the field
hi there. i'm a developmental psychologist and provide early intervention services to an array of young children aged birth-3 years, some of whom have a diagnosis of autism. i understand your frustration in wanting to have your child diagnosed as soon as possible. one of the reasons they typically wait is because you want to be sure the child is old enough to actually have some language (in order to assess for language delay, which is part of the diagnosis) as well as some socialization opportunities. if your child has other developmental delays prior to 3 years of age (fine motor skills, language, cognitive dev, etc.), you can be referred to one of the CA Regional Centers for an intake assessment and developmental evaluation - which would determine if s/he qualifies for early intervention services. they would also assess for autistic spectrum disorders (again, probably not until 18 months or later) if there are red flags, concerns, etc. this is probably the best route to take and would not cost you anything for the initial intake assessment or any other ongoing services. hope this helps! care
My youngest son was diagnosed with autism at 16 months by a team at Alta Regional Center. HIs pediatrician was also very knowledgeable on the topic, unlike so many others I have come across. I would call regional center again and ask to have him assessed. I didn't specifically ask for my son to be assessed for autism, just for delays, and I didn't get an runaround. My experience with RCEB has not been as positive, though it hasn't been horrible, either. You are right that there is no reason to wait and everything to be gained through early intervention, whether or not he is on the spectrum. I would push them for another evaluation and get one from a dev. ped only as a last resort. It is expensive and I have found we have received whatever services he needed through his regional center eval. SPED teacher mom
Yes, children can be diagnosed with autism prior to 18 months. My son was diagnosed at 15 months, though the diagnosis at the time was considered provisional because the primary tool used to assess autism, the ADOS, had not yet been validated for children so young. However, I believe there is a newer version of the ADOS for children under 18 months now, and there is some good research data indicating that children as young as 14 or 15 months can be accurately diagnosed with autism. As a mother and a mental health professional, I urge you to see a qualified developmental pediatrician or a clinical psychologist with expertise in diagnosing young children on the spectrum. If your child is found to be on the spectrum, please consider pushing the regional center to provide you with at least 25 hours a week of ABA. You can self-refer to the regional center, but it is better to have a developmental pediatrician or other professional refer you. Best wishes. R.
I am seeking help and lost at the moment as it relates to my son's primary care provider believes my 2 year old has autism. I am looking for advice on where to proceed from here. My son's doctor didn't have much to say other than you have a lot of work to do and don't let him see tv. If you have advice as to local groups, daycare, centers, etc in the Castro Valley (Eastbay Area) please email me. Thank you for reading my post. Patrick
I wanted to share my experiences on what I did when I suspected that my son was on the autistic spectrum. The first step you should take is to contact the Regional Center. The phone numbers/contact information are found at: http://www.rceb.org/ The Regional Center is then required to evaluate your son. I will warn you that it does take quite a bit of time for the Regional Center to get back to you (I believe for me, it took two months - but it could take longer now), so if you do have the financial resources, I would suggest getting an independent evaluation from a developmental pediatrician. There are some good referrals in the archives of the BPN (by the way, I also recommend that you find another pediatrician for your son, as it sounds like your current doctor is not qualified based on the advice he/she provided to you). After my son got the diagnosis of autism at age 2 1/2, the Regional Center provided in-home ABA therapy, occupational therapy and speech therapy. The Regional Center will provide you with recommendations on therapists, but I highly suggest that you do your own research on who the best therapists are, and then ask the Regional Center if they will fund them. I also put my son on a Gluten Free/Casein Free diet. Many people don't believe it works, but many also do thinks it works. In our case, my son had severe constipation, and we found the diet to really help that. I don't want to overwhelm you with too much information, but I think those are the main things to consider/get started with. I also wanted to say that even though it can feel overwhelming and stressful, it is well worth the effort to get help for your son at this early stage. I'm happy to say that after two years of therapies, etc., my son is doing very well. He is in a typical preschool, and is a social and happy little guy. J
I am really hoping someone can help this person. It just breaks my heart, that all he took from his ''dr'' regarding an Autism Dx is that you have a lot of work to do, and that his son cannot watch anymore Television ?? Hoping someone can guide this person is the right direction - for his son's sake. anon
My 5 year old child who just entered Kindergarten is getting into a lot of trouble at school. He is being evaluated by a school psychologist who is telling us that he could be suffering from one of the autism spectrum disorders and advised us to get a medical diagnosis. I am devastated after hearing this.
We have seen several ''specialists'' since he turned three because we realized that he had some issues and we got several different opinions ranging from ADHD to Sensory Processing Disorder. I dread going to another doctor now but I want to do whats best for my child. If I get recommendations for doctors in the bay area who specialize in recognizing or ruling out Autism Spectrum Disorders, I would be so grateful. I have been researching this online and my child doesn't seem to fit into any of the five categories!
I would greatly appreciate responses from parents who have gone through similar experiences. Thank you. Sad and frustrated mom
If you want to find out if your son falls within the Autism Spectrum Disorder, I'd recommend going to see Dr. Bryna Siegel at the Autism Clinic in the UCSF Psychiatry Department. She's an expert in this field and will tell you if your son fits this diagnosis. I took my son to see her 14 years ago and even though he didn't fit it perfectly, she decided that he had Asperger's Syndrome. A diagnosis is heartbreaking news, but there is a lot of help out there. My son is now 18 and getting help to attend community college. Here's the website for the clinic: http://psych.ucsf.edu/lpphc.aspx?id=438 Nancy
our pediatrician referred us to the Regional Center of the East Bay; our experience with them thus far has been really great. They sent out an initial specialist, who is now referring us to a medical team (psychologist and pediatrician) that specializes in the autism spectrum. if your child is diagnosed, he/she will be eligible for free services. look them up on the web. anon
I know how difficult this is for you, but it's good that you're trying to get an accurate diagnosis so your child can get appropriate interventions. Since there is now a much greater awareness of ADS, there is also a tendency to over-diagnose. Be aware that it is difficult to accurately diagnose a child with an ASD in an office or clinic. Who ever evaluates your child should do an in-depth interview with you about your child's early development, focusing on three areas (social, language, and behavior). Many children with ASDs are first misdiagnosed with ADHD, and many have sensory integration disorder. However, with early appropriate intervention, they can make LOTS of progress. There is a huge range of symptoms, and no two kids look alike. Many are very high functioning and need varying amounts of support.
I have a child with an ASD, and I'm a professional in the field. I've been impressed with evaluations done by psychologists and psychiatrists at Children's Hospital, but I've found psychologists at Kaiser Oakland and Santa Theresa a little too eager to diagnose after an office visit and not enough investigation into kids' behavior in their natural environments. However, private practitioner Mansoor Zuberi, MD, in Walnut Creek has a lot of experience with kids on the spectrum and knows how to evaluate them.
Are you working with an occupational therapist for the sensory issues? Some of them can give feedback on ASDs. I've heard good things about Susan Campodanico at Alta Bates. Speech and Language Pathologists can also help identify ASDs.
You might ask for a second opinion within your school district. An IEP team can determine special education eligibility without a doctor's diagnosis if the school psychologist and speech/language pathologists are experienced in identifying ASDs.
You're not alone. Good luck! Been There
My son had similar issues. We currently see Dr. Brad Burman and are very happy with him. I highly recommend him. He is far and away the most competent of any of the professionals/physicians we have seen. Take heart: more information is better and there are abundant resources for these kids. Good luck Anon
Hi. Please contact Oakland Children's Hospital. They have an autism screening process which should be able to answer your question as to where your son is quickly. Good luck. me too
I wish I could recommend a doctor for you- our son goes to public school so he was diagnosed by a psychologist through the school district. I just wanted to let you know that going through more than one diagnosis is very common.
Our son has PDD-NOS, an autism spectrum disorder. His symptoms mainly consist of language delays. Here is his ''diagnostic history.'' Twice we were told he had no language delays. Then we were told he had Sensory Integration Disorder, but fortunately not autism. Then we were told that he had sensory issues, an autism spectrum disorder and significant language delays. Each professional had a different opinion. We took him to an autism language clinic where we were told that he was not autistic, had no language delay, but that we should take him to the pediatrician for medical advice because he was ''non compliant'' during the assessment.
If there is anything I have learned it is that it is important to ask exactly what assessment tools are being used. I felt that the more informal the assessment was the more off the mark it tended to be. The psychologist at OUSD used the ADOS- the autism diagnostic observation scale. The key word is ''observation''. I still think it is somewhat subjective. I'm not sure my son is on the autism spectrum but at least he is getting plenty of language therapy.
Have you looked up the DSM entry for Autism? You can find it on the internet. If you haven't already seen it you might find it helpful. Autism really is a broad spectrum. I would also recommend reading ''The Misdiagnosed Child,'' not as fodder for arguing with psychologists, which I have found futile, but to learn about the various disorders, how they overlap, and how one can be mistaken for another.
It sounds like you have financial resources, which is wonderful. You might want to get a neuropsych eveluation. Don't give up looking for answers. Good Luck!
In your post this sentence screamed out to me ''I have been researching this online and my child doesn't seem to fit into any of the five categories! I encourage you to trust what you know deep down and here is why.
My son started Kindergarten this year at Harding Elementary and was in a very similar situation to what you are describing. He is highly sensitive and was easily frightened by the teachers and was acting out. The school teachers and the Principal handled it extremely poorly, telling me there was something wrong with him, that he was not ready for kindergarten and that he needed to be medicated. I did the trip to the Doctor and set up Psychologist evaluations and started to believe what I was being told. However deep down in my gut I knew that he did not act like this with us at home and trusted my instincts that there was nothing wrong with my child.
The first thing I did was move my son to another public school in the school district that was on a faster pace in learning and had a calmer environment. I am happy to say that he is excelling and not exhibiting any of the behavior problems that were happening in the other school. NEVER has he acted out at this new school. Turns out he was bored at Harding and scared of his teacher and the unsafe environment they had set up for the Kindergartners. His acting out was his message to us that it was not the right fit for him. I cannot tell you how relieved we are that we chose to try another school before we were convinced by the teachers that he had a behavior disorder and I really encourage you to look at other schools for your child. If he still has the same problems at a new school then maybe you need to go down the path of looking at diagnoses but please remember that some schools seem to think it easier to label & medicate children (especially boys) than to teach using a variety of methods that encourage every child to learn.
The whole experience was one of the most stressful times in my life and it was truly the public school nightmare that I feared. I completely understand the turmoil you must be going through. If you would like to contact me off the forum I'd be happy to talk with you more - my email address is included. Carolyn
Hi there. I feel your pain. We were told that our daughter might be slightly autistic. We went and saw Anita Barrows who specializes in this. (Our doctor recommended her.) Within 10 minutes Anita told us that our daughter is not on the autism spectrum and that whatever is going on with her is workable. That was four years ago. She also told us that she has seen lots of kids like our daughter and many of them ''out grow'' their differences by the time they are ten. Our daughter is now eight and it seems like Anita's predictions are coming true. Our daughter has received help from OTs etc and is doing very well. I would definitely make an appointment with Anita. She is a wonderful person to work with. Good luck. I have been there
Oh my gosh! I can totally relate to where you are so I just had to respond to your posting. Last December we were told that my son could not continue at his private kindergarten without a shadow aide. His behavior included not relating well to other kids, hurting other kids, yelling at the top of his lung for 20 minutes, and running outside and hiding in bushes when he knew he had done something wrong. He had to sit in a chair outside the group at circle time because he said the other kids were too close. They had a teacher with him at all times to make sure he didn't hurt other kids. They had tried all kinds of things included the favorite sticker chart and nothing was able to change his behavior at school. But, like your son, he didn't really fully fit any of the disorders.
Knowing that there was no way we could afford a $50/hr aide to attend school with him I went into SuperMom mode. We consulted a child psychiatrist who observed him in the school setting. He initially suspected Aspergers but ruled that out in the private session, then tested him ADHD and that didn't really fit either. There was a lot of aggression but when he was in the right setting he could totally function fine and could fully concentrate when he wanted to. We also had him evaluated by an OT for SPD and there was no clear diagnosis there either. I tried to get an appt with Dr. Brad Berman, a recommended developmental pediatrician. but the first available was 9 month out so that wasn't an option.
I read every single book I could find on ADHD/ADD, Austism, Aspergers, allergies, and SPD. One that really blew me away was Healing the New Childhood Epidemics by Dr. Kenneth Bock...it kind of follows along the lines of Jenny McCarthy's experience with her son.
But- again - it seemed my son wasn't autistic or ADD but something was definitely wrong so I took a little bit of everything from all the books and threw it all at my son to see what might make a difference. I did lots of probiotics to work on his gut, started daily fish oil capsules (Dr. Sears kind), and was diligent about multivitamins every day. We started giving him a high protein yogurt smoothie with fruit every morning for breakfast - that was from the ADHD books. I was ready to embark on the gluten and dairy free diet as a cure but it was SO intimidating. A good friend recommended removing everything artificial from his diet - she said it had really helped with her son and his SPD. I decided to first to start with the removal of the artificial stuff would make a difference - that was much easier to handle than gluten/dairy free. We read labels for everything we gave him and made sure it was free of artificial color (including annatto); artificial flavors, artificial preservatives and artificial sweeteners. It is a lot easier than it sounds -just shop at Whole Foods and Trader Joes. I was meaning to have him tested for wheat and dairy allergies but never got around to it - would have been my next step.
Well, we enrolled him at the public school mid-year, fully expecting to be utilizing their assessment and treatment services for special needs kids. He had an amazing teacher and a wonderful school and who would have guessed - absolutely no issues. Well, okay, I think there were a couple minor issues in the first month but that was all. Now, almost a year later we have a child in first grade who completely normal and is doing fantastic - we are getting notes from the teacher saying what a joy he is to have in class. When I get those notes I think back to where we were last December and how far we have come. I even cancelled my appt with Dr. Berman because it would have been pointless. My son now says he is allergic to artificial stuff and makes sure I remember his vitamins in the morning. He will still have something questionable once in a while at a party or such and we often see a direct result in his behavior, but it is a temporary spike that we can deal with. I don't know if any one thing or the combination of all the things we did that made a difference but we are sticking with it and are thankful for every day.
Please email me if you would like to talk more about our experience - I couldn't fit everything in the space of this newsletter - even in 3 parts! eva
I know that hearing the ''A'' word applied to your child is frightening. Please know that the autism spectrum is truly (almost unhelpfully) vast and is often applied to children that have any number of challenges that impact social communication and interaction.
My son was identified as being on the autism spectrum at 3 years old. We qualified for services from our school district (OUSD) and through their language-enriched preschool program, he has made extraordinary progress. He is a smart, funny, social, quirky kid and I would not change anything about him.
In my experience, seeing someone who specializes in ASD is your best bet. Pediatricians tend to dismiss concerns unless they see things like no eye contact or no speech: the more profound markers of autism. Our son is affectionate, verbal and outgoing - very unlike the portrait of autism you're used to hearing about - and our doctor assumed for that reason that he was fine.
Also know that you are not alone. There are a lot of families who have gone through the same thing and are happy to provide support and share experiences. Remember, your son is still the same great kid he was before anyone said the word autism. Please feel free to contact me if you'd like to connect directly. Christa
I would recommend a Developmental Pediatrician. Unfortunately, seeing one could take some time. They usually have long wait lists. I know of Dr. Deborah Sedberry whose waiting time may not be as long, a few months. Also, Dr. Brad Berman is an excellent Developmental Ped, but can take up to one year for new patients to get in. Both Doctors are in Walnut Creek. Cheryl
Hi Sad and Frustrated - I'm looking forward to the responses to your message. I, too, have a (now) 6 yr old who entered Kindegarten and starting receiving diagnoses that ran the gamut. My little guy doesn't fit in any one category either and it is SO frustrating trying to get him help when I don't know what he needs or where to turn. He also has some sort of sensory disorder and has been labeled autistic to aspergers to ADHD.
I wish I had someone to refer you to but I haven't found anyone yet. And all the specialists I've seen all have different opinions. I just wanted to say you're not alone and it is scary, frustrating and sad. I wish you the best Navigating the IEP
Since autism is genetic and results in specific brain changes that can be seen on an MRI, has your child already had an MRI to confirm the diagnosis of autism? Is there another case of autism anywhere in your family? Is your child's father older than average?
I hope you can rule out autism. My friend who is an older teacher thinks that many boys are being diagnoses with borderline disorders when all they really need is more exercise and more intense exercise. Remember when boys used to ride their bikes and climb trees all day? Hopeful
The Regional Center of the East Bay, or whatever area you are in, does free evaluations for ASD (Autism Spectrum Disorders). Their clinicians are generally considered experts in the field. You can go to regional centers on google and find the one for your area. It is better to get a definitive answer than to wonder. Even if your child does not have an ASD, the regional center psychologist can give you recommendations. There are several physician's who also diagnosis ASD but I understand their waiting lists are 8 - 10 months and regional center has guidelines that allow only 120 days. Please call them as soon as possible and keep calling if you do not receive a call back from them. Ask for intake. Someone in the field
I am a speech-Language Pathologist, and I work with children who have language difficulties. I'm not experienced with autism specturm disorder or I could recommend my own therapy service, but I can recommend a couple of clinics that have a very good reputation for ''getting to the bottom'' of making a diagnosis, whether that is on the spectrum or not.
UCSF has a clinic that is designed especially to diagnose autism spectrum disorders. They have a multi-disciplinary team to assess, including an MD, psychologist, speech therapist, physical therapist, etc. I think it's important to get a correct diagnosis so you can provide your son with the help that he may need, early! Don't wait or give up.
Another place to look into is the Bright Minds Institute. Dr. Fernando Miranda is a neurologist that I work with in a hospital setting with adults. He is the founder of the institute and has been featured on Good Morning America talking about autism and how we are diagnosing children with all types of disorders that involve how the brain works, but we are not regularly doing any imaging of the brain to add to the anectodal evidence and behavioral observation. They have a Web site you can find their information and number there. They also have a multi- disciplinary team to do the assessment.
Best of luck! And do not get frustrated, you are doing the right thing by trying to find answers so you can help your son, and you will find them! Kirsten
there is a helpful yahoo email group at autisminterventionbayarea [at] yahoogroups.com christine
You got lots of good advice and referrals; I hope they help you get what you need for your son. I just have to share that our experience with Brad Berman, developmental pediatrician, was not helpful at all. We spent a lot of money for an evaluation but got no more information than we came in with. This was several years ago, but he missed our son's Asperger's diagnosis. So unless, he's gotten better at identifying the milder forms of autism, I'd recommend finding a specialist with more experience in the autism field. anon
our son had what seemed like an asperger's diagnosis last year. the first expert claimed he had it, before meeting him practically, the next few claimed he didn't and once we read more that made sense to us too. my understanding is that autistic kids do not have a sense of themselves as being like other people--so teaching them behavior by using empathy does not work, it is not a way to help them understand how to interact socially. it is a common route to teaching kids these things, and totally dead ends with autistic kids. beyond this though are a wide range of kids who are developing socially at different speeds, who are not autistic. there are signs on the buses also saying a kid is diagnosed with autism every 20 minutes. it appears to me that there is an epidemic of autism diagnoses going on--this is catching kids who need special help but also kids who are just not ''average'' socially. it appears to me that lots of kids are on medication, too, so that ''normal'' is harder to be these days. we took the approach--what if he had aspergers, and looked into programs, talked to lots of experts. having a kid learn social skills is a good thing with or without autism diagnosed. we found there were things that we could teach him to help him better understand how to interact. in particular there is a book social skills for special kids and also a bunch of jed baker books (picture books). these were useful and fun, even though the label turned out to be wrong. but the drastic measures that were being suggested to us by the well meaning doctor were unnecessary and would have been devastating to us as a family, stretching us beyond what we could handle. and all the people saying we were being bad parents by not dropping everything and taking him out of school for these programs etc...they meant well but they were wrong. it was very hard. if your son is autistic, he has lots of company. if he was diagnosed as such but isn't, probably he is just maturing slowly socially, so there are some (maybe similar) tricks you can learn to help him handle social situations and to know he *can* handle them. hang in there, either way, there is no reason to think his life won't be great! anon
My son (29 months) is receiving speech therapy and OT for speech delays and sensory issues, and both therapists have recommended an evaluation for ASD/PPD. We're working with RCEB (Oakland) but he cannot get into see a neuro/psychologist until late October -- at which point it seems the docs won't see him because they are limiting their testing to 18-30 month old toddlers. Anyway, we have the means to have him evaluated privately, although I understand from speaking with out pediatrician that the wait will be several months regardless of which route we take. My question is -- for those of you with experience with RCEB/otherwise -- would you wait and go with the RCEB provider or work toward getting a private developmental pediatrician? Interested to hear about your experiences. Thanks. in limbo. . .
Regional Center needs to evaluate your child NOW. ASDs need early intervention, so you need information ASAP. You can appeal, you can push them to do the evaluation sooner. Regional Center is supposed to provide treatment for ASDs from birth to three years, then the school district takes over if special education services are deemed necessary (you can get this free evaluation from your local school district just before your child turns three years. You might consider using a private evaluation to bolster your demands for services from Reg. Ctr. Be warned: you might get conflicting results from the evaluations--but at least you've started the process. In my experience (personal and professional), parents do best when they know their child's rights (ADA, IDEA, etc.) and don't take no (or ''we'll do it later'') for an answer. wrightslaw.com has some helpful info. Good luck! A mom and psychologist
I'm a little confused about your situation and have a lot of questions, but I'll just say that in general, if you have the means, absolutely do NOT wait. If you're headed for a diagnosis, get it and start services BEFORE he turns 3 and leaves the caseload of the Regional Center because, if you thought the RC bureaucracy was bad, wait until you hit the school districts!
My son was diagnosed privately and it just made the RC eval process that much easier. They still provided services, but since we already had the dx we were able to skip a lot of the steps and head straight for them. I recommend Dr. Erica Buhrmann in Albany (510) 540-5320 Feel free to contact me directly. Jill
If you can afford private evaluations, get them. It doesn't prevent you from getting an evaluation from the RCEB, too. So get both. My experience is that RCEB services are inadequate. My son's presenting issue was a speech delay (he didn't speak any words except mama until 3 1/2 years old). They evaluated him twice only for speech even though I requested other evaluations. At 3.5 he qualified for twice weekly group speech therapy for the school year. At 4.5 years we moved to another area where he received a full evaluation of speech, occupational, physical and cognitive areas. He had a spectrum of issues beyond speech and presented at a borderline mentally retarded level. They placed him in a therapeutic preschool. His cognitive development is now way beyond the borderline stage, his speech is about 80 per cent understandable, he uses full, complicated sentences, has a strong vocabulary, can write his name and can read simple words like ''and'' and the names of his friends. Amazing progress! These are services we never would have received through the RCEB--partly because they delayed evaluating him even though I pushed and pushed. He's fully ready academically and socially to start Kindergarten on time this fall--until last year I was planning on a late Kindergarten start.
Perhaps with the opinion of the other therapists, you will have better RCEB experiences to report. (My son's pediatrician never accepted my conviction that he had significant delays, instead insisting he was developing normally.) But my sense is the RCEB is overwhelmed or underfunded, handle their limited resources by stalling evaluations for services, and once services are given, they aren't adequate. Not a RCEB fan
We were in your shoes and we got the private evaluation. You can show the results to the RC and most likely they will adopt them. If your son is on the spectrum and could use some additional services, those services are paid for by the RC until age 3 - 36 months. If you do not get a dx by 3, or are too close to 3, they will not start paying for the services. It is best to have those service in place if only for five to six months (like was the case with us) when you move on to dealing with the SD at age 3. You have a better chance of retaining them. Been there
I am seeking advice about diagnosis and treatment for my 3 year old son, who may show some symptoms of mild Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS). One one hand, his intellectual development seems very strong: at 3 he can read almost anything. On the other hand, he seems unable to participate in a spontaneous, two way conversation. Instead, he usually repeats the question asked of him. Other possible signs of PDD include: lack of any imaginative play (when we suggest it, it upsets him); mixes the pronouns ''I'' and ''you''; and strong adherence to routines. Do you have recommendations for assessments, such as a developmental pedatrician and/or recommendations for seeking treatment for a relatively young child. Thanks much. Elizabeth
You can request a free evaluation from your local school district. What you describe does sound like PDD-NOS, and the language delay alone would make your son eligible for special education services (language/speech therapy and possibly a special preschool). Early intervention is essential, so please call right away. A mother and professional in the field
it's important to be evaluated by a neuropsychologist...elea bernou phd in lafayette is quite good...maybe berkeley therapy institute might have a referral...there are a lot of alternative therapy options but it's important to first get tested..this sets the stage for the bulk of therapy which will be at school...the younger therapy is started, the better gregory
Once he is 3, the school district is responsible for providing services to him if he qualifies. They will do an evaluation, but they do not give a diagnosis. I believe you can still ask the Regional Center for an assessment, otherwise ask your doctor for a referral to a developmental pediatrician. (If your health insurance is like mine, they might try to weasel out of paying for the assessment even if it is supposed to be covered.) I would pursue the school district evaluation and a regional center or private assessment simultaneously, since the wait is so long (the school district has to do their eval within 60 days of request, other asssessments can take 2 - 3 months) but, if the school district does agree that he qualifies for services, I would try to stall the IEP meeting until you have the final assessment from your own doctor, which hopefully will be more thorough. Although I am happy with the services that my son is getting through the school district, I just wish I had gone into it feeling more informed and in control, and he did have some issues that were not being addressed initially that I had to press for later.
As for other treatments, there is a lot available out there. A full developmental assessment can help you decide which ones you need to pursue. The traits you described sound consistent with hyperlexia, but again, I really recommend a full assessment by a professional. Anon
I am looking for information to help an autistic 4-year-old boy. The mother does not have much community/school support. But she really wants to try her best to help her kid at home and possibly to educate the preschool teachers as well. Her son has language delay and some other characteristics of autism but seems to be high-functioning kind. Any information and advice you have on this topic is much appreciated. Thanks a lot. Lily
My pediatrician thinks that my 3 year 1 month old daughter is mildly autistic and wants us to have a developmental assessment. I have been looking into this and the wait times for this are extremely long when we are feeling so anxious. We are getting on the waiting list at Children's Child Development Center and have also contacted the East Bay Regional Center. Has anyone had experiences good or bad at these two places? Does anyone have any experience with this type of evaluation they are willing to share? What can I expect? What can I expect with this type of diagnosis? Can anyone recommend a really sensitive great child psychologist who could do the assessment privately? If you would be willing to talk to me about your experience with this I would greatly appreciate it. We are pretty terrified at this point. My daughter is very outgoing and interactive with adults and children (although not with her pediatrician!), has some problems with limits and has been having trouble with language and pronunciation. Her speech is indistinct and words she used to pronounce correctly are sometimes now slurred. She used words earlier than her peers but then progress seemed to slow down and now her inteligibility is not good. Strangers often do not understand her. Frankly, I don't view her as autistic but I am worried about the amount of rhyming that she does. She does it interactively with us and also babbles and rhymes talking to herself alot. She sometimes uses a singsong tone that people have commented on. (We are on the wait list for a speech eval. at Herrick.) many thanks
For a developmental / psch-ed assesment, you might want to try the Raskob Institute in Oakland (at Holy Names College) ph. # 436-1275 For a speech and language assessment, try Sue Diamond. holly
For an evaluation try Brad Berman, the PDD clinic at Children's Hospital, Behavior Analysis (I think that they are in Concord, they are associated with STARS school in Walnut Creek), Bryna Seigal at UCSF. The Regional Center is a good thing to hook up with, but I believe that you need a diagnosis before you can receive services. CALL ME, I have an 11-year-old autistic son. Jean
Mary Crittenden, Ph.D. in the Department of Behavioral and Developmental Pediatrics at UCSF is very experienced and knowledgeable and wonderful with young children (and parents).
Carolyn Johnson, Ph.D. at Children's Hospital, Oakland's Department of Psychiatry, also wonderful with small children, is an excellent neuropsychologist who works in an interdisciplinary team that has a lot of experience with autism spectrum disorders.
I have worked with both of them and would bring my own child to them without a second thought. I don't know if either do private assessments, but if you couldn't get in through UCSF or CHO, it's worth investigating.
I recommend getting a referral from the pediatrician to a private psychologist or developmental pediatrician and speech therapy team. There is an excellent team at the UCSF Mount Zion Pediatric Group. Autism is actually pretty complicated to diagnose and in any event, you want to know as precisely as possible what is happening with your daughter's speech, and how to intervene. Be pushy and avoid waiting, if you can. Some people believe that early intervention is important with autism. The East Bay Regional Center can provide various kinds of resources if you need them.
In response to parents seeking professional diagnosis and consultation for Aspergers Syndrome and autism, I'd like to recommend Dr. Edward Ritvo, an internationally recognized researcher and diagnostician in the field. Dr. Ritvo has studied autism for over thirty years while at the Neuro-Psychiatric Institute at UCLA, and now he and his wife Riva run the Ritvo Clinic, in Los Angeles. He is one of the absolute best in his field, and may be reached at 310 476-5109.
Just diagnosed with autism
Our son , 7 1/2, was recently diagnosed with Autism. Would love to meet other like families to talk & share. We are reeling still and feel a bit lost. We're in Berkeley. J.
A good friend and colleague of mine who also happens to be the parent of one child diagnosed with autism and one diagnosed with Aspergers recently co- authored a wonderful book called Parenting Your Child with Autism. The book starts with the premise that there is no ''prescription'' for how to handle your child's needs, and as such they help explore ideas and resources so that you can evolve your own strategy for what is going to work for your family. The book is evidence-based (with references) but it's not too jargony and it's an extremely readable work. You can find the book on Amazon.
I know from experience that you are at the start of a difficult path, but reaching out for support is so wise. I have a 15 year old autistic son and my learning curve has been steep and rocky! I'd be happy to get together with you and also know others who might be interested. Sending you good thoughts.
My son was diagnosed as being on the autistic spectrum. Five months ago, when we received the diagnosis, I felt so hopeless. Now, after working with therapist and using a bio medical approach, my son has improved so much. So now I have two questions on this 1) Am I doing everything I can to make sure that he continues to improve and learn? 2) I know that most experts say that autism never goes away/there is no ''cure'', but have any of you had experience to the contrary? Maybe I'm just kidding myself, but I've seen so many great changes in my son, and family and friends are saying the same thing. I have thoughts that in a couple of years, he'll be a ''regular'' kid. But is that really possible? I'm trying to remain hopeful, but I also want to be realistic about the future. Concerned Mom
I do not know if autism ever goes away. I do know that childhood does. Don't loose your sons childhood chasing something that may or may not happen.
I have a 5 year old who has been diagnosed with autism. We have learned to make decisions based on ''at what cost''. I do not mean financially. I mean at what cost to my sons dignity, the trust he has in me, and the family as a whole.
I have called it ''The Velveteen Rabbit'' method. I love Sam so much his fur might get worn off. Knowing there is profound unconditional love surroundng him I belive he will know he is whole and okay. I belive in retrospect this is the most important thing.
Find people you trust to walk with you on the long path ahead. Therapists will come and go as the system requires. Some will be more connected to your family than others. I suggest you search for one or two people who will walk with you for the long haul. I was raised in the Bay Area and now live in PA. Dr. Ann Parker in Berkeley is one of those people for me. She has expertise in neuro developmental disorders but looks at the whole situation with uncommoly good common sense. The other person is Rebecca Klaw in Pittsburgh. She has a background in education and autism consulting.
Your son is still the same little guy he was before the diagnosis. Go hug him and remember to make plans mindfully. Please let me know if there is something I can do for you or you would like to talk. Warmly, Kate
Well, part of your question made me chuckle to myself. ''Am I doing everything I can?'' That's a question that my friends and I ask ourselves 24/7. I suppose you could stop sleeping and spend your nights making PECS cards; are you doing that?? That's not a serious question, of course, but it seems like there's always *something* else we could be doing. The truth is that you have to find a balance between helping to heal your child and keeping yourself sane. He's making great progress, you're doing interventions that work, I'm sure you've done your research and you know your options, what else is there to do? You could dabble with supplements, you could try your various therapy options, but if what you're doing now is working, short of developing a crazy drug habit and never sleeping again, it sounds like you're doing everything you can. And you have his progress as evidence of that, if there *was* something more to do, he wouldn't be doing so well without it.
As for your second question, that's a really tough one. We've had our diagnosis longer than you have, 3+ years now, and the most interesting thing I've found is not necessarily how much progress my son has made, but how much *my* expectations have changed. At 2.8 when we got our dx, I, too, went online and read about kids making miraculous changes; entering mainstream kindergartens at the age of 5; nobody can tell there's anything different, etc. Now, at just past 6, those things have actually been true for us. He's in a mainstream kindergarten and it's true that most people can't tell there's anything different about him, upon first glance. But he still has autism. And he still isn't like the other kids. We still have years of work to do, I can't imagine there will come a day when he doesn't need an IEP. He'll never be a ''regular'' kid, but what does that mean, anyway? I think in order for you to get answers to your questions, you need to be able to define your own expectations. What do you want him to do or not do, and if he doesn't meet your expectations, will you be okay with that?
I'm not sure if this is helpful to you or not, these are just the things that I think about on a daily basis! Feel free to contact me directly. Jill
Kids do get better. There are a couple members of my autistic boy's medical and therapy team who simply don't think he fits the diagnostic label anymore. He still has issues and he needs several doctors and therapists, but he functions fine at a school with no supports at all - they don't know he ever had a diagnosis. mom
You sound like you are doing all of the right things, exploring options and enjoying his successes. However, I've worked with children on the autistic spectrum for over 20 years. First of all, a child's long-term capacity for progress is dependent upon the severity of the disorder's impact on his/her primary areas of development (motor, intelligence, communication, social, and self-care skills). It really differs from child to child, with some learning to talk and others not, for example. Early intervention is best (2 to 7). But we are talking about progress from where his own ''baseline'' was, not becoming a ''regular kid.'' That's the tragedy of autistic spectrum disorders. I'm a mom, too. You are being a good mom in exploring the methodologies (diet changes, OT sensory programs, TEACCH workstations, picture schedules, PECs system), but be VERY wary of anything that is potentially harmful or overly expensive (shots, pills, etc). There are alot of false promises out there because, with the rise in ASD, this is where some salespeople are targeting you fragile parents. If you connect with a good OT, speech therapist, and teacher in your school district, they can explain so much to you and give you strategies for home, too. You will be better equiped to recognize and celebrate the ''baby steps'' of progress your child makes if you are not holding onto false hope for a cure. Forgive my bluntness, please. You really sound like a good mom. I just feel that too many people are steering parents in the wrong direction, only to have them end up with the same child they had before, only with much less cash in their pocket and lots of frustration. I wish you and your family the best. jl
there is a lot that can be done ranging from behavioral, nutritional, chiropractic, exercises, etc. I have a child on the spectrum who is now doing much better with school/peers because of specific interventions....the literature on what works is constantly changing..most important is to do as much as you can as soon as you can if you'd like to discuss send me an email gregory
Even ''regular'' kids need lots of care and attention, and even ''regular'' kids can go through a rough patch in their development. Because your son has had such a wonderful therapist and has made so much progress, he might actually be better off than a ''regular'' kid who did not have such a caring and devoted mother. Pro-active
Although the experts you've consulted are correct about autism being genetic, that doesn't mean it can't be treated. My parents were both obese, but by being extra careful about the number of calories I consume every day, I've managed to compensate and to maintain a healthy weight. The fact that your son has improved so much shows that you have taught him how to overcome many of his genetic disadvantages. He might end up better off than some regular kids. Luck of the Draw
You don't really provide enough information for us to answer either question! As to whether you are doing enough: if he's over 3 years old, you should be in contact with your school district to request a district assessment and start district-based services. If he's not, you should be in contact with the Regional Center where you live to have THEM assess him and suggest a set of services. Is he speech-delayed? Autism spectrum kids often are, and speech services are helpful. Does he have sensory issues, like hypersensitivity or, inversely, low sensitivity? You could start some OT for this. Any tantruming, if young? Sometimes ''play therapy'' can work. Can you afford to pay for more than you are already doing? If not, asking the question will just frustrate you!
As to your 2nd question - well, if you load on services now, you may find that the ''autism spectrum'' diagnosis was just the closest thing anyone could get to describing your kid at this age, and that as he grows he will change, improve, have fewer symptoms. Would that happen without the therapy? Will it happen if you do nothing? Who would take that risk to find out?
My now 12-year old is a hugely different kid from when he was diagnosed at 4, and is doing great. Is he typical? Heck no. Is he pretty happy and being educated well? Yep. So while I don't think you would say he's ''cured'', he's not at all the screaming, inarticulate, frustrated kid he was at 3, now that he has a lot of modalities in which to express himself! hope that helps. Provide more input, and you'll get more specific suggestions! - Been there
Hello- I just wanted to write some words of encouragement on the bio medical approach. The daughter of my best friend in Chicago also recieved the same diagnosis a few years ago. Through bio- medical/alternative therapies/supplements and changes to her diet she is now completely functioning. Now at four years old, she is doing so well that she was accepted into the gifted program in the Chicago Public Schools for next year. What you are doing can only help your son, and at least you will know you've tried everything you can. Stacy D.
At an autism conference at Children's a few years ago a parent asked whether autism can completely go away and your kid can be totally fine. The presenter replied that if that is the case there was a misdiagnosis in the first place. Don't forget that there's not 'hard' biological marker for autism right now. People will evaluate your kid and then based on what they observe they will give your kid a diagnosis. Later if your kid is observationally 'normal' it means the diagnosis wasn't the right one to begin with. It is all based on observation and not on any 'hard evidence' which means that there is a lot of misdiagnosis and revision of labels. I myself have a kid who has been 'misdiagnosed' or was it a misdiagnosis? Who knows? We have a hard to label kid so we've gotten lots of labels. I try to remind myself that this means there's a limit to professional knowledge and try to maintain a healthy skepticism. Right now, many professionals are happy to give kids an ASD diagnosis. My feeling is that if your kid seems a little funny that's one of the labels they'll get. In 50 years if we find a hard marker for autism everything could change and 'woops, sorry for all your heartache' but those kids aren't really autistic after all. Don't forget that back in the day when only kids who were non-verbal, self-stimming etc. were labeled autistic the cause of autism was believed to be a rejecting 'refrigerator' mother. The state of science will change...As for are you doing enough, I commiserate with that feeling but don't have any answers. I think it is important to focus on what your child needs and find their strengths and try to ignore the labels unless they are helpful or feel accurate to you... best wishes
My 2 1/2 year old son was just diagnosed with autism and my husband and I feel at such a loss regarding support, resources, tips, advice. We have another appointment this week to find out more about therapies, but we just feel like we are floundering in limbo and would love if anyone could point us in the right direction about what we should be looking for in regards to therapies, support networks, etc.
We live in Walnut Creek but will travel whereever we need to to find out more or to help our son. He was supposed to start preschool in the fall, but my hunch is that we will need to look for something that better meets his needs and would love any advice from parents who are in or who might have been in a similar situation.
Our hearts are breaking that we didn't realize there was a problem sooner..I guess we were guilty of just assuming these traits (limited eye contact,delayed speech, little interest in other kids, etc) were simply indicative of his personality...having no idea that they were such red flags for autism. So at this point we want to do whatever we can to learn what we can do for him.
A sad Mom who knows things will get better...but is just crushed right now
I can imagine that this kind of news is hard to swallow. Blissfully there is much more we know about Autism now than a decade or two ago, and there are different treatment approaches to choose from.
You may get MANY responses, so I will be brief
An excellent consultant in this area is Dr. Ilene Lee - email is ilenelee[at]aol.com. She specializes in Greenspans floor work.
Another approach is the work of the KAUFMANs of the Option Institute. You may find their book SON RISE intriguing. They developed their method for working with their son and totally CURED the autism ! I met him when he was in his late teens. They have an institute on the East Coast. You can Google them.
Treatment gets costly but early intervention will make a WORLD OF DIFFERENCE.
Dr. Ariel Lenchner
(my specialty is early literacy and learning disabilities)
First, let me say that I'm so sorry you're having to go through this. Having lived with the dx for about a year and a half, I can say that the hardest part about the whole thing is the heartbreak of it all. I worry all the time about how he'll be when he grows up, how other people will judge him, how other people judge him now, how he feels about it all, etc.
You have so many options right now and I'm sure it feels overwhelming. In fact, I'm pretty sure I posted a message similar to yours when we first found out. Your son is under 3 so you qualify for services at The Regional Center, which should be the first place you call if you haven't called them already. Please feel free to contact me directly and I'm happy to share with you everything I know and have learned over the years. I've been where you are and I'm more than happy to help!! Jill
Hi, You are right, it will get better. There is a myriad of information and new therpies out there for this condition. You are not alone, the percentage increase in Autism in the last 10 years is staggering. There should be regional centers in your area that can offer help and advice. Parents Helping Parents website is usefull. They are located in San Jose. Occupational and Speech therapy are very usefull, along with dietary modifications,such as gluten free and caseinne free diets. There are doctors that specialize in DAN (defeat autism now) protocals, my therapy-The Sensory Learning System has proven very valuable www.sensorylearning.com. There is also Auditory Integrative Training, and hyperbaric oxygen therapy to name a few. The bottom line is Keep Trying, the therapies and dietary modifications do improve quality of life. Bryan
You may not realize it now, but the fact that you recognized the autism at 2 1/2 puts your child at a great advantage. He is able to get the therapies he needs much earlier than kids who are diagnosed at 5 and 6 years old. My son was diagnosed at 3.9 years old and although the ''autism'' doesn't go away, I see his potential now and I know it's because he got a head start. You have an even earlier start. I was sad too, my feelings were very similar to yours. So I will just say what I wish someone would have told me at that time of getting the diagnosis: Instead of looking at what he can't do, think of others ways he will be able to do it. You'll spend the rest of his life looking for alternate ways for him to learn. You will appreciate every accomplishment, not just the ones that every other parent witnesses and you will never take another one for granted. He is a special blessing and I have learned so much from mine in his eight years, so much that I wouldn't change a thing about him. Mom to a PDD Kid
I'm very sorry to read about your difficult situation. Although I do not know much about the topic, I recall Mothering Magazine issued a Special Autism Edition in their Jan-Feb 2006 publication. You can buy back issues at mothering.com. The site may have further resources to help, too. And I am sure this community will give you plenty of useful advice. anon
I read your post and had to reply. I recommend calling the Department of Communicative Disorders at Cal State East Bay (Hayward) and speaking to Audra Elliott SLP-CCC for resource information. Additionally, web information is invaluable. I actually have several excellent autism books/resources that I could allow you to copy as well as some websites that I have found to be helpful. There are MANY therapy choices available and it will just involve alot of research on your part. Unfortunately, there are no easy answers here. I wish you luck. sam
Was your son diagnosed with Autism from a private developmental pediatrician or neurologist or from the Regional Center?? Whoever gave your son the diagnosis should have also given you or recommended a developmental program to address his needs. If you are connected with Regional Center, your case manager would be able to assist you with a program (no cost to you). This is an organization that assists the developmentally disabled population and in your son's case (early intervention)...can set up a program for him. Most families chose an ABA program along with speech and occupational therapy if needed. It depends on your child's needs. There are also a lot of support groups out there. You can seek services independently but it can be very costly. If you are not connected with the Regional Center of the East Bay...the number is 510-383-1200. Ask for the intake/ assessment unit for children under three. good luck to you. Anonymous
First of all, there's a new novel out called Daniel Isn't Talking that I think would be great for inspiration. Also, there are a number of list servs on the web that can be very useful with things like locating resources, getting information, etc. If you can't find them you can email me at www.ayeletwaldman.com and I'll hook you up with a very experienced and generous mom. Ayelet
Hi - I am an Occupational Therapist who has worked with many children with Autism. I'm sure you are freaked out and sad and going through your own process right now. But let me just chime in and say that the Autistic kids I have worked with have all been such happy little souls that I never felt sorry for them for a minute. It's the hardest for the parents to readjust their expectations, negotiate therapy, home programs, etc. But there is so much amazing work being done with Autism right now that you will be able to find lots of tools, therapists and teachers to work with you to make his life great. For now I suggest you call Regional Center of the East Bay and ask them how you become a client. Typically you get a referal from your doctor. Regional Center provides in home therapy to kids until they are 3 and in the school system. You will have access to speech therapy, occupational therapy and a home based teacher to come out and give you things to work on at home. So call them right away so he can get care before he's 3. When he turns 3 he will receive school based help from the school district. And I would try to just keep enjoying and loving all the things you love about your son before you even had a diagnosis for him. The diagnosis will help you/him get the help he needs to flourish, but don't let it limit his unlimited potential as a person. Best of luck, Sirena
There is hope for your son! There is a wonderful Doctor who is specialized in working with kids who are autistic. Many of my friends are in the same situation that you are and have greatly benefited from seeing Dr. Dave Traver. Best of luck to you and your family. Here is his contact information:
Dr. Dave Traver M.D., FAAP 1261 E. Hillsdale Blvd. Foster City CA 94404 650-341-5300 phone
You'll probably get a lot of recommended reading but I would be sure to read The Impossible Cure by Amy Lansky and then go see a classical homeopath Into the alternatives
My daughter was also diagnosed at 2.5, and I remember that fear and guilt like it was yesterday. My heart goes out to you! Now, a year and a half later, I have learned so much, grown so much, and seen so much amazing power and advancement in my daughter that those first days seem like a lifetime ago. You are not alone! There are so many wonderful educators and resources out there, and you CAN access them. Please write me, and I will give you all the help I possibly can Tara
May 15th TIME Magazine had an interesting article on autism and a model treatment program in the schools. The good news is your discovering it at such a young age, there are volumes of resources and treatments.
There is such a wide range of functioning on the spectrum of autism it's difficult to recommend the best treatment. 50% of autistic children will never speak according to 1995 statistic I learned at a PECS conference for lower functioning autistic children. It sounds like your child has some speech.
Hopkins pre school in Berkeley has provided services (including speech therapy)for many children on the spectrum starting at age 3. Alta Bates in Berkeley also has treated many early intervention and pre school age children. For speech therapy Michelle Garcia Winner is one of the best known in the area (San Jose)who specializes in high functioning autism and non verbal disorders. It sounds like your child needs lots of verbal language therapy, pretend play, turn taking, and eye contact. She may be someone to keep in mind when he is older, or for a referral. Eye contact may be the only socialization goal to work on and expect results for age 2-3. Several children without Autism do not engage in interactive play and interactive conversation until age 3-5.
I'm not sure of resources in the Walnut Creek Area, but my understanding is Insurance will cover speech therapy for children younger than school age.
Hope this helps! Pamela
I am sorry to hear about your baby. I too have a child with autism. I would urge you to contact the autism research center in San Diego. You can find them on the internet. Also find your local TACA chapter (Talk About Curing Autism Now). They will be very helpful and even have a new parents guide. There are lots of advances being made in the treatment of autism. I have personally attended a Defeat Autism Now where I was able to see 10 children on stage who have recovered. There are 1000 documented cases of recovery. Good luck to you and feel free to email me off list if you wish. Kathie
Our three year old son has just been diagnosed with PDD-NOS. We are extremely upset and feel at a loss about what to do next. We are currently waiting for an assesment from OUSD but in the mean time were wondering if anyone in the BPN had any advice about behavioural techniques we can try at home to get us started while we wait for our assesment. Any advice about good books or other resources on the subject? Support groups etc. Most resources I have found on-line seem to address autism alone which is not the part of the spectrum that he falls under. Worried
While you're waiting for OUSD to complete its assessment -- and there is a specific time period in which it must be completed, under federal law (see http://www.wrightslaw.com) -- I strongly suggest that you seek counseling immediately with a therapist who understands special needs. Locally, Dr. Lynda Kravitz in Piedmont (510.420.0888/drkravitz [at] sbcglobal.net) counsels individuals, couples and groups.
As for behavioral help, look into Stanley Greenspan's books and don't be afraid to consider therapies that are used for autism. These range from step-by-step recipes for tasks to learning to read body language to understanding what causes behavior and how to encourage or discourage it. Take a look at ''The Out-Of-Sync Child'' and Carol Gray's Social Stories. Disregard anything by Bryna Siegel; her thinking is outdated at best.
Also, it would be prudent to consult with a special education advocate. Parents and school district administrators work best together when they treat each other as businesses, but it's difficult to not take it personally. An advocate will help you stay calm and focus. There are many advocates; an excellent one is Dana Lear, http://www.negotiatingthemaze.org Anonymous
My 4 year old is also diagnosed pdd-nos. I can totally sympathize with the pain, anger and shock you must be feeling right now. Know that you are not alone, there are a lot of other parents who have been there and who are there right now. Know, also, that a diagnosis of autism spectrum disorder does not mean that your son will not live a happy and fulfilling life. I know it probably feels like the end of the world (it did for me!) but it's not and with support you can get through this.
It's hard to give advice without knowing specifically which issues you're facing because the spectrum is large and every kid is different. My son receives 15 hours a week of intensive therapy (called ABA), and if I had to do it over again, I would have started it immediately after receiving his diagnosis. I was a little bit in denial about it, but at some point it became impossible to stay there. Since starting ABA he's made at least 9-12 month's worth of progress in a 3 month period.
Check out autism-pdd.net for lots of information and an online support forum. Don't just rely on the school district for an assessment, call Behavioral Intervention Associates (www.bia4autism.org) for more information about therapies and treatment. There's an online support forum in the Bay Area (I think it's called specialneedsnetwork at Yahoo groups, I'm sure somebody will post the address). I also have a support group that meets every other week at my house. Please feel free to contact me directly if you want to ask questions of somebody who has been there or if you want to come to our group. Jill
Dear ''worried,'' I am a parent of a child who has a similar diagnosis and I know how overwhelming it is when you first find out (and how discouraging it is to have such a non specific, not very helpful diagnosis). I am currently running a free program at the Berkeley YMCA for children (ages 3-4) who have developmental delays. It is called the Swim and Gym Program. It includes a swim lesson, tumbling class and a support group for the parents (childcare included). The program is on Thursdays from 1pm until 3:30. Before I was the coordinator for this program, my son and I were participants. It was really a life saver for both of us. Please feel to call me and leave me your number so I can call you and tell you about the program. Or,if you are not ready or able to dive into the program, but would like some resources, I can give those to you. Hang in there, Rachel.
You can try a book, The OASIS Guide to Asperger Syndrome by Bashe & Kirby. Also, check out the MIND Institute at UC Davis. Great websites about learning disabilities and developmental issues are Schwablearning.org, LDonline and Allkindsofminds.org. a school psychologist
Hi -- I'm not familiar with OUSD but have first hand experience with PDD-NOS (my son was diagnosed at age 3 and is now 6). Send me a note and I'll send you my phone number and I can give you some guidance. Judy
Dear Worried, Your child is so young that it's hard for anyone to give him a more concrete diagnosis! We were there at age 4, and also had the ''not autism but something'' diagnosis. My advice to you is to review some of the autism material, selecting by symptom grouping. For example, if your child has a speech delay, get him speech therapy asap! and private, one-on-one to supplement if you can afford it.
If you feel he has a hard time in social settings, or with personal control (tantrums etc) have a look at the sections of autism writings that deal with this topic. If he has sensory issues and could benefit from OT, this is often covered by group insurance plans.
My son is 10, and we have pursued a lot of similar therapies in the 6+ years since his diagnosis with PDD-NOS. Now he has moved out of that diagnosis, and we work under ''learning disability'' but same basic symptom groups: Social pragmatic language and social skills, horrible handwriting / drawing (fine motor skills) and some other learning difficulties due to different brain wiring. But it will be years before you can get to such specifics!
Things that often help PDD-NOS as well as autism kids: routine, routine, routine; multiple sensory paths of learning, like saying, drawing/writing AND movement all to learn a given point; learning with music; social stories; lots of sensory input, if he's not defensive about touching.
Some books we have used (do library first! before buying any)
The Child with Special Needs Building Bridges The Out of Sync Child The Explosive Child How to Talk so Kids Will Listen (and Listen so Kids Will Talk) My Social Stories Book
Lastly, I will be happy to help you if you would like. My son's a lot older, but I have years of experience dealing with OUSD. There are plenty of other OUSD parents out there who can help, too. Please come to the OUSD CAC meetings - the CAC is like the PTA for special needs kids in OUSD. The meetings are usually the 1st Monday of the month. Good luck and continue to reach out for help. - Nancy
I would suggest that you look into behavioral therapies even if your child does not have a full-blown diagnosis of autism. Any worthwhile behaviorist will base treatment on goals indicated by your child's behavior and needs, not on diagnosis. Good luck! anonymous
What a difficult time this must be for your family. One helpful book with ideas for parents to use at home is ''More Than Words'' from the Hanen Centre. I am a speech language pathologist, and the parents of children with PDD-NOS have seen positive changes in their children and enjoyed the activities from this book. I (along with many SLPs) use lots of their ideas in therapy as well. Something else to consider: Assuming your son's language skills are behind for his age, you might want to find out if speech language therapy is a covered benefit under your health insurance and request a referral from your son's pediatrician. That could be a good way to get some help while you wait for school services to begin. Nora
Treatment for Autism
Can anyone recommend an insurance advocate to pursue insurance reimbursement of money we have spent out of pocket related to our son's autism? Since insurers were required to pay for autism therapies starting July 1, 2012, we have spent at least $10,000 out of pocket on a developmental pediatrician, OT and social skills group for our son. We will spend close to another $10,000 in the coming year. Our insurer has denied our claims. We both work full time and don't really have the administrative capacity to pursue this. Thank you in advance for your recommendations! Really? Denied?
Try contacting Kristin Jacobson at Autism Deserves Equal Coverage http://autismdeservesequalcoverage.com/About.html or Karen Fessel at Autism Health Insurance Project http://www.autismhealthinsurance.org/about-us . Also, the new options through Obamacare may help you out...insurers can no longer deny kids for pre-existing conditions and can only charge a ''sick'' kid twice as much as a ''healthy'' kid, so you might be able to find better coverage. best of luck
We have a severely autistic 7-year-old son and are looking for ABA providers serving Berkeley. Currently we have about 15 hours per week of after-school ABA services, focussing on self-care, life skills, behavior management, socialization, and so on. We wish to continue these services when we move to Berkeley in June 2013. Our insurance company, Kaiser, recommended STE Consultants, BIA, CARD, or ABC, in that order. Does anyone have experience with these or any other ABA service providers? Thanks a lot! Mark
Hi! I sent you an email but, figured I should respond here in case you don't get it. I worked for BIA for years as a program manager and after having kids started working privately for families. BIA is a great organization. They are really supportive and create programs based on the child's needs specifically. They make it fun. It is amazing to see the progress happen. I think it works best if the parent is involved in the process and varies over the work they do into their daily life (e.g., generalization). That's when you see the most progress. Of course every families face challenges but with any program that will happen. Hilary and Deanne (the founders) are the best in the business. After my kids get a bit older I plan on going back. Please feel free to ask any questions. Good luck! Lindsay
We used the services of BIA for our son and we were very happy with them. Our son stopped receiving services almost three years ago now, but I credit BIA with making a huge positive difference in my son's life. I have also heard good things about STE Consultants, but I have never heard of the other two providers you mentioned. Anon
I highly recommend BIA. We worked with them for 3 years when my son was younger and I credit them for changing our lives completely. Feel free to contact me directly if you have any questions. Jill H
i'm a Marriage and Family Therapist and i see children on the Autism spectrum within the context of their relationships and family life. Over the past several years I've worked collaboratively with STE Consultants and i've been really pleased to work with them. They are very respectful of the parents' perspective and always welcome their input, and the folks i've worked with are very well trained and mostly awesome with the kids. I've seen them persevere with some incredibly difficult cases, with skill, dignity, and respect for the kids they serve. I highly recommend them! I also want to say that with the increse in diagnosed children combined with new legislation requiring insurance companies to pay for Autism treatment, i'd caution you about asking questions of your perspective providers. find out how much training their staff has! Best of Luck with your search! geri
My 3 years old son was just diagnosed on the Autism Spectrum by Kaiser. Kaiser autism center suggested us to go for ABA therapy, so I did some research online about ABA; I like some of the ideas but don't really like the robot-liked system. I m just not sure on choosing the appropriate therapies, which can get the most beneficial on him since we already got late on being noticed of his autism. Also, my son is going to regular preschool for half day in Castro Valley, and he is learning from and making progress there, so I don't want to cut his school hour. The preschool teachers are saying my son is a strong imitator and he likes to watch the others kids playing; he just needs a lot of time to get used to one thing; once his speech catches up, his behavior issue should be better. Personally I agree with their opinion, but I don't want to give up any chance to help him. For sure he will go for speech program. So does anyone have any suggestion or experiences to share on the therapies besides than ABA, which would help with the tantrum and being in the community? Carrie
I was in your shoes about four years ago. My son was almost three when he was diagnosed with autism. He is now in a typical first grade class, has made some close friends, participates in sports, and is an overall happy kid. I cannot stress enough how important ABA was to our son and our family. We received funding for ABA through the Regional Center. If you haven't yet, you should contact them. Our ABA provider was BIA, and I highly recommend them (http://bia4autism.org/). It takes a big time commitment, and it can be stressful, but our son would not be doing as well as he is now without the many hours of therapy that he did. I also recommend speech and occupational therapy. In addition, we changed our son's diet to gluten free and casein free, and gave him certain supplements. We did all of these things consistently until he was five. After five, we reduced the therapies, but continued with the diet. Now at seven, my son goes to a group OT class, and still remains gluten free, for the most part. I've seen a few parents take a ''wait and see'' approach because they don't want to label their child or they don't feel the therapies are worth it, and I see that these children are really struggling years later because they were not put into the appropriate therapies earlier. It can be a scary and stressful journey, but it is so worth it when you see the positive results. Hopeful mom
Hi. I'm a special education teacher. If your child was diagnosed with autism then you should really go to the school district and request in writing that your child be evaluated for special education services. Once this evaluation has taken place and he qualifies for services - which he will if he has autism - the district is legally responsible for serving your son. Early intervention is absolutely key for children who have autism and teachers who are trained to work with such children should be working with your son - not just any preschool (no matter how exclusive) / daycare provider. That said, CVUSD has preschool for children who have disabilities. There isn't just one strategy that works best for any child so you need someone to work with your child who is studied in many techniques - a special ed teacher. I've taught older kids with autism and there is a huge difference between a child who received early intervention services from trained and certificated teachers and a child who did not. Please go to the district office asap. I hope this is helpful! M
Hi Carrie, I think you are doing the right thing to start on therapy as early as possible and to research different options. I do have experience with autistic children and would be happy to share with you. Kathy
Our 2 year 4 month old son has not be diagnosed with anything, but has been receiving speech services for the 5 months and Infant Educator services for 2 months. A recent observation by a psychologist has resulted in a recommendation for ABA assessment and then therapy. The assessment is 15 hours a week plus 10 hours for parents and therapists. That's 3 hours a week one-on-one with our son. That seems like it's going to take over our life! We are feeling a little overwhelmed at this point especially given that both of us parents work full time. Any suggestions or ideas as to how to juggle all of this? thanks.
I hear you and can sympathize. My son (now 7) went through 1 year of the exact same ABA therapy you are talking about (through STE/RCEB?).
My 6 yr old received 1-to-1 services 3hrs/day for 1 solid year. I worked with a sr level therapist weekly for a year. he is now off that intense program but i still have weekly consultations to keep him on track. I use the strategies for my older son as well (9).
Before ABA my 6 yr old was having intense tantrums that were frankly frightening and totally out of control. He had severe OCD, anxiety, as well as his autistic/behavior issues. Now, OCD/anxiety are dramatically lessened, tantrums are minimal and much less severe and I've gotten control of his behaviors.
The bad - it is freaking exhausting! Other parents have absolutely NO idea what we go through. You have to stay on top of it almost in 5 minute increments throughout the day, every day, no break. I've learned ABA works only when parents are absolutely consistent. Once you start relaxing the strategies, the behaviors creep back up/get worse. It really is all about changing YOU so you can be more effective in dealing with your son.
The good-IT WORKS!!!!! Yes, its exhausting but not as exhausting as dealing with the behaviors BEFORE ABA. I'm a single mom with TWO special needs kids and I can manage it (though it is hard).
I have to constantly fine tune the strategies at least on a weekly basis. I have star charts up the ying yang! But it works for certain types of kids, including mine.
Here is an example: yesterday my younger son was with his babysitter. she said 'computer time is over. time to get off'. he went into meltdown mode - slowly creeping up to a level 10 tantrum. i heard it and came in the room. he was getting hysterical. PRE-ABA = we would have had a severe tantrum with kicking, scratching, clawing, biting for probably 30 minutes. POST ABA = i calmly said 'i will put the timer on for 1 minute then you will get off nicely'. i walked out of the room, put the timer on for 1 minute and he hopped off and said 'ok mom' and went to play in his room.
What have I learned? With my son, he needs to feel control. So by giving him 1 minute to get off, he feels in control of the decision to get off. Pre ABA I would have forced him like a mack truck to get off and totally clashed with him. It is that small of a fine tuning that totally avoided a meltdown. I give a little, he gets a little = we all win.
I would highly recommend doing ABA while your son is young and you can help him gain control over his actions. it gets way worse when trying to do this on older kids. You have a chance now to help him learn a better way to deal with his feelings/emotions. GOOD LUCK!! Been there, it DOES work
ABA is for children with autism. I'm curious about why it would be necessary if your son has not been diagnosed with anything? If your child does have autism then this program is absolutely in his best interest, regardless of the toll it might take on your life (in my opinion). On the other hand, if he doesn't, I don't know why it would be needed? At any rate, I had a home program at the intensity that you describe, for 2 years, and am happy to tell you about how it impacted our lives, if you decide to do it. I guess the question at this point is: Do YOU think intensive therapy is necessary? Jill
I have a 23-month-old son who was diagnosed with autism at 15 months. My son participates in 25 hours of ABA per week (plus PRT at Stanford) because the empirical research suggests that 25 hours a week is the minimum number of 1:1 ABA hours needed to effect positive change in children with autism or PDD-NOS. As 30-40 hours a week is really best, we are working towards this goal. Also, early intervention and parental involvement are key to successful outcomes, so we started ABA as soon as possible and are as engaged in his program as we can possibly be.
Let me be straight...All of this does takes over your life. Before I had my son I was a ph.d. level researcher. I knew I couldn't go back to FT work, so I took a PT job teaching and even that was tough. I spend most of every day fighting the regional center or insurance to get or keep services for my son, and when I am not taking calls or writing letters, I am participating in my son's 25-hour a week ABA program or taking him to Stanford for PRT (a type of ABA that teaches parents skills to increase their children's use of functional language). My husband has also had to make sacrifices, including taking a lot of vacation days to help out at home and participate in ABA at home and PRT at Stanford. I will add that I am currently 8 months pregnant and have spent my entire pregnancy stressing about my son and fighting for what he needs.
If ABA was recommended by a psychologist with expertise in working with young children with developmental delays, I would take her recommendation to heart and start ABA, ASAP. How involved you want to be may be your choice. Some parents have to work outside the home (for money or their sanity). Others of us are lucky enough to be able to stay home and participate in ABA more fully. Personally, I'd like to think my active participation in my son's program, keeps the quality of his care high, but there is no way to know for sure.
I dream of going back to work PT soon, but I have chosen to make my son's therapy a priority right now, as this is a critical period in his development. I do still believe that if you can set aside time for activities you enjoy that don't revolve around ABA, you may be happier. We don't have a handle on how to do that, yet, but we are working towards this goal. You might also consider getting on some of the local Yahoo listserves for parents of children with special needs (PPSNK, autisminterventionbayarea). anonymous
Our situation was similar. My son was assessed through RCEB for a 'speech delay' but I was concerned that he was autistic. They didn't give him an official diagnosis at that age, but after his evaluation, they recommended 25 hrs/week of ABA + speech therapy. They saw enough red flags for autism to get him into early intervention. (Later, at age three, he was diagnosed with high-functioning Autism.)
ABA turned him around, got him connecting and communicating with the world and people around him. We saw dramatic changes in his ability to communicate almost immediately. I was 'at home' with our other son who was about 5 mo's at the time. So the whole situation was intense. We had therapists in the home with us during all of his waking hours...but they were a pleasure to have around. I got used to it. I didn't get out a lot. I was glad I was home, because even though I wasn't actually participating on a daily basis (it's more 1-on-1 with the therapist), I totally 'got' the approach and could carry it into our home-life. (Things like this really only work when there's synergy with therapists and how the family works at home.)
You asked about working, though. Early intervention therapy is meant to happen ''in the least restrictive environment for the child''. So if your child is in full-time daycare, it happens there. We had about 4 months where it was happening in-home. Then he was at a preschool 2 mornings a week and the therapist was there with him. Then he started at a 4 day/week school and the therapist was with him there for another 2 months (until he turned 3).
We worked with STE Consultants (highly recommend). The thing I found most valuable was the weekly team meeting where all of the therapists and the clinical director got together to discuss progress. I was there for every meeting, asking questions, getting advice and insight, figuring out what to do in the home.
Here's what I would recommend to a working family. Every week, one of you takes a personal day and is at home to 'be around', observe or participate in the therapy. Make sure it's on the day of your team meeting. You'll feel involved. You don't have to be there every second, honestly. But on the flip side, I wouldn't want all of it happening while I was away, because it's so helpful for the parent. If you can't make a team meeting, arrange to call in.
It's such an important time in brain development, you'll see measurable improvements -- and this intensity level won't be forever. But it's worth it. Good luck. PS-6 months after our ABA wrapped up, I'm back at work full time. My son's in a OUSD preschool in the morning and 'our preschool' in the afternoons. - anon
We're starting ABA (Applied Behavior Analysis) with our 2 year old son and I'm wondering what to expect and how to get the most out of this opportunity. Does anyone one out there have experience? It sounds a bit intense. We've been allotted up to 25 hours per week, in-home. He qualified for services through Regional Center East Bay. He has a severe speech delay and has delays in his social/emotional/play/motor to varying degrees as well. He may be on the high-functioning end of the Autism spectrum. We don't have a diagnosis yet.
I was blown away by how many hours it is. I just assumed that it would be once a week, like his speech therapy. But I guess this is what early intervention is all about. I'm eager to get started, but I don't really know what to expect. I'd love insight from anyone who has gone through it. Here my over-arching questions:
- We'll be working with STE Consultants. Anyone have experience with them?
- What is it like having therapists in the house all the time?
- Were you involved with the therapy, or was your child working one-on-one with the therapist? (Did you get to learn strategies to help/guide/teach your child?)
- Did they support your child in a day-care or pre-school setting? How did that work?
- How can we, as parents, help this early intervention to be as fruitful and successful as it can be?
- Is there anything that you know now that you wish you knew when you started off?
Thank you! Anonymous
Yep, that's the key to ABA, the intensity of it. We had a home program that lasted 2 years, 15 hours/week, and during that time we ''weren't allowed'' to take vacations or be gone for any extended period of time. I'm a little surprised RCEB has given you this service without an actual ASD diagnosis, but he's only 2, that's almost too young, still, to be diagnosed. It's good that you're starting early, though, the earlier you start, the better the prognosis.
- We worked with BIA, who I simply can't rave about enough, so I don't know anything about STE.
- You get used to having people in your house all the time. At first it was a little weird, and I did a lot of extra cleaning, but after a while they just became like family members and I was used to it. It helped that I adored all of the therapists we worked with (I'm still in touch with all of them on Facebook, 3 years later) and there was practically no turnover in the 2 years
- I was involved in the planning of the program but not with the actual carrying out of it. This is because when I'm in the room my son prefers to sit in my lap and snuggle and not do any work, so my presence was more of a hindrance than a help, that may not be the case for you. If it's a good program they will work with whatever you have to offer.
- We got classroom support, mostly in the form of evaluations and recommendations, and also IEP attendance (that's a whole other thing you don't have to deal with yet!)
- As for how you can help success, I would say just keep an open mind. These guys know what they're doing, and the first thing I learned about ABA was that it is ''counter-intuitive'' to what you think should work; a lot of it just went completely against my natural instincts as a parent, but that's kind of what autism does to you, it forces you to change your expectations about what kind of parent you thought you might be, because it's in charge, and not you.
- I don't think there's anything I know now that I wish I knew then, we were lucky that we had such a fantastic team and we saw immediate results. My suggestion for you, just beginning this autism journey, is to find a support group, either online or not (online support groups tend to fit your schedule better) because you're going to need the help and support of other parents who are where you are or have been where you are, to help get you through this. Good luck. Jill
I highly recommend getting in touch with Diane Hunter. She is a mom of an autistic son who knows a lot and is a great resource for everything that goes along with it. She is now working as a life coach for parents whose children have been diagnosed, she has an upcoming workshop that looks amazing, I just can't say enough about starting with Diane. Her website is www.AfterAutism.com. torie
I have experience as a nurse case manager for a set of twins who received ABA in a very tiny apartment! Yes, its intense, its a huge time commitment, and. . . the kids showed almost immediate benefit. The parents have challenges and this mom really stepped up to the plate! Good luck and enjoy learning about how much your child will grow. Nurseb
Our autistic son has been in ABA therapy for two years with CARD. He is beginning to use words to get what he wants, and his behavioral problems (screaming, banging his head, pica,etc.) started to improve within the first 3 months. I found from previous experience that the 25 hours a week (40 hours is best), is absolutely necessary.
It is not easy to have people in your house all the time, but you will become accustomed to it. Therapy can also be done on outings if the therapists are open to it.
If you want to make sure the ABA is successful, you must know what your child is working on and be sure to reinforce it. All will be for naught if you cave to temper tantrums, or it just seems like too much work to do it the ABA way. Nothing is worse than having to start over when the therapist arrives every day. Julie
ABA is a scientifically based therapy for children on the autism spectrum. To get yourself introduced to ABA therapy, it would be helpful to research a bit about the founder of ABA : Dr. Lovaas.
ABA is provided in a 1:1 setting, by a behavior tech (up to 2 or 3)/supervised by a senior consultant and is based on targets or goals in which data is collected to measure progress. The targets are typically based on an initial assessment. The targets, especially if these are regional center funded services, will focus on getting your child ready for the community - communication, potty training, behavior, eating, dressing and self help skills.
Studies have proven that a program of 25-40 hours per week is the most beneficial to young children r.
I have worked with STE on special education cases and have had the opportunity to work with many ABA providers across the state. I can only speak as a special education attorney and say they are excellent at what they do. To answer your specific questions:
1. Yes, parent training is always involved and you should ask STE how much, when and how you can learn.
2. Prepare your house for therapists and therapy. Have an area dedicated to ABA therapy it will definitely make the services go more smoothly.
3. STE and other ABA providers can support your child in preschool. Regional Center should be consulted and approve this service. However, by the time your child is 3, the school district will take over. Contact your preschool and talk with STE. The targets and goals (as well as the data) will be collected at the preschool site and the 1:1 behaviorist works with your child to contrive opportunities to socialize, communicate and follow the program.
4. As parent, the best thing to do is to stay on top of the program, join some autism parenting groups and read up on ABA. Get copies of data sheets (ask STE to provide them to you at the end of each week), start a binder and keep records. Let STE know that you would like some training (this is almost always part of the program) and how can you be involved.
5. Going forward:Get all of your providers to communicate with one another. Sounds like you may even want to ask Regional Center for more speech. If your providers have each others reports and records, they can capitalize on what the other is doing. Consistency and generalization across settings is key. Mandy
I am glad so many people have had good experiences with ABA, but I feel I most pose some cautions. I am a pediatric physical therapist with 5 years experience, 3 in a sensory integration clinic. I am also the parent of a beautiful almost 3 year old with sensory processing disorder who may/may not also be on the spectrum. I believe that any pediatric therapeutic intervention needs to be child directed (the child's interest, needs, wants, are the basis of which you build & structure your therapeutic intervention). Having said this, go with your gut, you are your child's strongest advocate & don't be afraid to voice concerns over something that bothers or troubles you regarding any therapeutic intervention. We were first referred to BIA. This resulted in 2 months of trauma for my son. They were extremely forceful, held him in place, ignored his sensory needs(he needs deep pressure, proprioceptive,& vestibular input in order to organize & focus), would consistently take away toys forcefully (desired & non desired) even when he was interested & learning from it. My child started having horrible tantrums, something he never had & which disappeared after we ended our association with BIA. The director also told me that if I ''would only agree to their methods'' that ''they would give me the gift of a typical child'' A statement I find offensive as both a clinician & a parent. We were then blessed to find Easter Seals, a hybrid of ABA that follows the Denver floor time model of intervention & is more child directed while implementing some of the ABA principles. Easter Seals in combination with occupational therapy at Suma Kids & speech therapy at Alta Bates has been a wonderful approach & our son has gone from 37 words to 150 words & short phrases, in addition to increased social interactions as his sensory needs are being met. I strongly urge you to have your child evaluated for Occupational Therapy by a sensory integration trained therapist. I am not familiar with your service providers for ABA, & they may be wonderful. I just felt I could not let everyone sing ABA's praises without giving you this cautionary note. ASD is just a label, what counts is your child's individual impairments/delays/difficulties & you must find the right intervention for your child. Please do not be afraid to question,or change interventions until you find the right fit. Best Wishes in your path to helping your child live his best life. Ann
STE has been working with my son since he was diagnosed a year and a half ago. We are thrilled with them and I'm glad to discuss with you. I don't have a copy of your original post to address your specific questions, but feel free to e-mail me. Best, Heather
My son was recently diagnosed with autism. CHAI was immediately offered as a therapy option by RCEB and after interviewing with them and other places we decided to go with them. Has anyone had any experience with them? Also I am looking for recommendations for support groups, playgroups( I live in Oakland), and Dr's within different specialties( a developmental optometrist to do a visual evaluation) that you have had positive experiences with. It seems like there are a lot of people out there that are going through this( 1 in 161 children, 1 in 41 males) but despite us being pretty social we don't know anyone personally that's going through this. I think it would be both helpful for us and the other people involved so that we can share information and support. I recently saw a womans post about Aspergers and the amount and sincere compassinate response she got really made me proud to be a part of this network. The BPN was on vacation when we got our diagnosis, and after spending that time advocating for our son I have looked forward to reaching out to others in our shoes. Thanks in advance and look forward to hearing from you! lily
Great website for autism resources: http://www.difflearn.com/ Chris
Dear Lily, First of all, good for you for getting right into the stream of things to do to help your child. Never having been a Regional Center client, I can't speak to the services they offer. But I would like to tell you about several other resources.
First off, when your child turns 3 you will be transitioned from RCEB to Oakland Unified. That's good news in many ways - Oakland has some great programs for kids on the spectrum. The main parent support group for Oakland parents of students with special needs is the Community Advisory Committee, or CAC for short. We meet usually on the 1st Monday of the month. Contact CAC to be put on its email list at cacoakland [at] comcast.net
Also, there is a local special needs maillist you can join. It's a Yahoo group based listserv called Special Needs Network. Search for it on Yahoo and join right up.
The schools that are not inclusion schools - the ones that are specialized schools for kids with various needs not served in a mainstream environment - all have parent groups too. So depending on your child's school placement, you may have a built-in support network.
I hope this helps, and I look forward to meeting up with you in one of the other mail forums available! - Nancy
My 2 year old son was disagnosed with mild autism / PDD. He was referred to CHAI (Oakland CHildren Hospital Autism Intervention), but we're not sure that's the best place for him. Anyone have had experience with CHAI or BIA (used to be in Emeryville, now in Oakland) or any other early intervention centers in East Bay? Thank you!!
I have no experience with CHAI but my son currently gets services from BIA and I can tell you without a doubt that it's the best thing I've ever done for him. They are the absolute BEST. The program is comprehensive, flexible to adapt to your particular child's needs, but the best part is that I saw instant results in my son as soon as we started. I wouldn't go any other way, ever. The only problem, and they'll tell you this, themselves, is that they're incredibly expensive. Our school district is paying for them, through my son's IEP, and if it wasn't for that, we wouldn't be able to be doing it. Feel free to contact me directly if you have any questions about the specifics of our program. Jill
My son was diagnosed nearly 2 years ago, just after his 2nd birthday at Children's Hospital. I'll never forget the day. He's doing much better now, even tho some days are still hard, but it does get eaiser. I think the first year was the hardest. We were ''assigned'' to Si Se Puede Behavior Inc for in-home ABA 20 hrs per wk. Our Regional Center case manager also tried to get us hooked up with Stepping Stones, but they were full. We've been happy with SSPBI. I have a friend who has uses BIA and likes them very much. There is a great swim & gym program on thursday afternoons and friday mornings at the Berkeley YMCA for special needs kids, including those with ASD. They also have a support group for moms. There are several great support groups meeting in the Montclair/Walnut Creek area, as well as online support groups which are fantastic places to get info. Many of them are at yahoo groups. You can also get respite, child care assistance and diaper vouchers from the Regional Center. Email me if you'd like to join and I can pass your email on to the moderator of one great group for the east bay. mma
We have done a Lovass type home program for 3 years, I am a divorced mom with three little ones, my son is six with autism, now after the program he is social and verbal, it took a toll on my little girls and my finances to be able to stay home and do a 40 hour progam but I did it because alot of the public schools had inadequate programs. But at this point I am burnt out and at some point will need to find work and wondering how and when most parents stop these programs?at what age do you stop? how to transistion? does anyone know of other states like CA that have a idea of how to work with autistic children in school? I feel quilty for moving on but its very difficult. Nat
Hi Natalie, I sympathize with the financial and emotional difficulties of doing the myriad treatments for an autistic child. Personally, I have been a play therapist for three years now in a home-grown program called ''Son-Rise'', and it has been extremely effective, with the child now asking me questions about myself, becoming more interactive, etc. Not many people know about this type of program, but here is their web- site:http://www.autismtreatmentcenter.org/ it's through the Autism Treatment Center of America. Although I work with other therapists in a full-time program (run by the parents), you can customize it to be an adjunct program to a regular school, or whatever level of intensity you desire. Maybe this type of arrangement would work for you. Good luck! anon
Hi, I missed your original post, but I would like to recommend the home program my son went through. We used BIA, Behavioral Intervention Associates, and they worked with him for 20-30 hrs/wk for about a year. My son then entered a regular kindergarten class with the support of an aide. Nancy
Does anybody have any personal experience with chelation as a treatment for autism? I'd love to hear all about it. Does it work? Is it just quackery? Are there any local pediatricians we can work with who have some expertise in the area? Feel free to contact me directly. Jill
You've probably already seen this, or 10 other people will post it. But a child recently died during chelation therapy. Read about it here: http://msnbc.msn.com/id/9074208/
As of the date of the article, I don't think the child's cause of death had been officially determined, but if you're considering chelation therapy, it might be worth following up on this story. Anon
Please research this and inform yourself. A child recently died who was undergoing chelation therapy. There are no reseacrh studies that prove or disprove the effectiveness of chelation for autism. The organization that endorses chelation is not recognized by the scientific community. Do a google search. Anon
A good deal of information about chelation generally can be found at http://www.quackwatch.org/01QuackeryRelatedTopics/chelation.html and specific to autism at http://www.quackwatch.org/03HealthPromotion/immu/thimerosal.html
Granted, the man who tends this website does have a point of view -- and he pretty much thinks chelation is quackery, but at least he puts together information from reputable sources, and gives additional leads. Might at least be worth a look. Karen
Questions about whether child might be autistic
Our pediatrician believes our 9-month-old boy may have autism, as do we (actually, I'm pretty convinced he does). He has made no connections since birth, doesn't seem to recognize me as mom, prefers to look at things to people, few expressions, also several months behind in development. (I have older boy so I can see the difference.) I just read The Autism Book by Dr. Bob Sears. Awesome resource. I want to find a doctor who is expert in the biomedical approach from the Berkeley, Oakland, El Cerrito, Albany area. Does anyone know of someone with MAPS or DANS training? Oak Children's Hosp tells me I have a 4-6 month wait to see a developmental pediatrician. Also fearing long waits from Regional Center, which is so far unresponsive. Am thinking of going the private route to attempt to get diagnosis so we can proceed. I understand early intervention is crucial. Any other advice for getting the ball rolling quickly is helpful. What are other's experiences with wait times at Regional Center? Are they using the biomedical approach there? Would love to connect with any parents who've tried the biomedical approach to talk sometime. guidance please
While I think nine months is early for an autism diagnosis, I totally understand your desire to be proactive with early intervention. My autistic son is now 15 years old and I have spent a huge amount of time, energy and money navigating the waters that you are asking about. There's a lot to learn, but I would say that the crucial first step is to get your diagnosis. You need to see Dr. Ann Parker (900 Colusa Ave Suite 202, Berkeley, (510) 528-5580) ASAP! The worlds of behavioral therapy, biomedical approaches, support services and holistic autism treatment are extremely confusing. Dr. Parker has been a kind, supportive and incredibly knowledgable ''voice of sanity'' for our family. She's the best. Best of luck to you. Please feel free to email me with any questions. Whatever your ultimate diagnosis, I know your son will take you and your family on an amazing journey.
If your 9 month old is not responding to faces visually, I recommend a comprehensive vision examination to rule out a vision problem such as a high refractive error (blurry vision) or eye health issue. Eye care providers (optometrists and ophthalmologists) who routinely test infants and young children should be able to rule out vision problems as the cause of your infant's visual inattention. Deborah Orel-Bixler, O.D., Ph.D.
We had a speech evaluation at Herrick (Alta Bates) that cost $700 out of pocket because of our deductible. I wish we had gone straight to the Regional Center, which didn't charge at all for the evaluation. We did have to wait just about exactly 45 days from the time we sent the Regional Center a letter to the time we heard from them, it felt like a black hole of unanswered messages. I think it helped to have our pediatrician also contacting them and sending information. It's a long month-and-a-half when you're worried about your kid. I was quoted over $1,200 for a private evaluation by a local developmental pediatrician, and she didn't take insurance for the evaluation portion. I'm glad we waited to get the eval at Regional Center - they were really wonderful there, I was very happy with the evaluator. My son, it turns out, is at age level in almost everything - from the time red flags were raised (18-months) until we actually got the evaluation (21-months), he caught up. We did qualify for some service but that has been slow to get started (it's been over a month). I think once it gets going it will work fine. If money is no object, then go for the private evaluation and get the ball rolling. Otherwise be prepared to wait a bit to hear from the Regional Center (do get your ped to contact them, though), and try to educate yourself in the meantime through books and online resources. Good luck!
You're correct that early intervention is a great boon for children with autism and autism spectrum conditions. I would urge you to call the special education office of the school district in which you live.
In CA special education, funds for developmental services are administered thru the Special Education Local Plan Area, or SELPA. Oakland, having a big special-ed population, is a ''single district SELPA''. But smaller districts, like Berkeley, El Cerrito, Alameda, combine forces. Figure out which is the responsible office for the district in which you live. School districts call special-ed departments ''Programs for Exceptional Children'' or PEC.
Even tho' your little one is only nine months old, it will be your local SELPA that can connect you to ''Mommy and Me'' programs for pre-K children with autism and other disabilities. Under the Individuals with Disabilities Education Act (IDEA) it is illegal to put kids with disabilities on waiting lists for appropriate placement. This generally applies to school-age kids. But you can bring pressure to bear earlier to get services
Your local school district will also have a Community Advisory Committee for Special Education, which is like a PTA for special ed parents and teachers, and is mandated by state law. it is great to connect with other special ed parents.
Regional Center services do not generally kick in until the responsibility of the school ends, usually at high school graduation or age 22, whichever comes first. But it is important to have your child identified for Regional Center services before they turn 14. Earlier is better. A letter from the Regional Center was what it took to get our son six years of free college tuition, income from SSI, Medi-Cal eligibility, and many other program opportunities. It does take time to get set up with the Regional Center, but you can approach the local SELPA immediately. And if they balk, the local CAC can help you apply leverage.
There is a Nolo Press book on the Individual Education Plan (IEP) that describes how to handle worst-case battles with school districts. I went in expecting trouble, and found that the school district was wonderful to our family every step of the way thru high school graduation. Good luck! Amelia, former Oakland CAC co-chair
I just wanted to say that the responder who said that Regional Center services don't kick in until early adulthood is incorrect. Early Intervention Services in California are provided through Regional Centers, and services through a SELPA/school district do not begin until age three. (to clarify, special Education services are provided through SELPA's/school districts, but special education eligibility begins at age three. What you want is Early Intervention, which covers birth - three.) So, if you want services to start as quickly as possible you should have your child evaluated by Regional Center now. They can provide Speech, OT and PT as well as an Infant Development Specialist (or pay for a social program) until your child turns age three. At three, the school district will begin to cover therapy services, but your child can continue to be a Regional Center client if they meet certain criteria, and RC will cover things like respite and medical supplies at that point. So, I guess I am just urging you to call Regional Center right away and not waste time contacting the school district at this point. Once your child is a Regional Center client and receiving services, they will help him transition into the school district at age three automatically. Also, check out the PIP Program (Parent Infant Program) through Children's Hospital Oakland. This program is amazing and is for babies through age three. mother to a daughter with special needs who has navigated these waters before!
9 months old is not too young to be accepted into an early intervention program. My own child was accepted at that age and our good friend's child was accepted at 3 months old. Each individual's experience will differ, but what do you have to lose by trying? Call Regional Center and go from there! a Berkeley mom
I am newly pregnant with my second child. My first child was diagnosed with autism at age 2. While he is doing amazing after receiving incredible early intervention, I am quite nervous about baby #2. After getting the diagnosis for my son, and doing a great deal of research, I changed the way my family eats, I now buy almost all natural and organic products, etc. But I'm wondering if there is anything else I can do (take certain supplements, eat or don't eat certain foods, etc.). If anyone has been through this, I'd love to hear your advice. worried mamma
It's so great that you're able to articulate your worries and concerns. It brought tears to my eyes to read your post. I was in the same situation as you 7 years ago. You may get some medical advice or people trying to reassure you, but I just wanted to send you a virtual hug and honor and validate your fears. It's scary. Keep reaching out to people who can be supportive and ignore those who dismiss your feelings. For me, I felt so relieved to see my daughter after pushing her out. She ended up being NT but when I was pregnant with her I was also in an intense phase of trying to figure out WHY my had autism, so I beat myself up for every little thing. I hope you have an amazing birth. been there
It's good that you caught your son's autism early and gave him early intervention. My son has asperger's, we too caught it early and gave him early intervention. Now at 19 he is at a 4 yr college, living on campus, and loving it. Continue with the intervention for your son, it makes all the difference! When my son was 15 mos, I was pregnant with my daughter. We ate healthily (I didn't take supplements), limited the use of the microwave and all electronics, and did a lot of outdoors activities including long nature walks (almost daily). When my daughter was born she was perfect in every way. The most wonderful baby and a pure joy! Now at 16 yrs with a few minor exceptions every now and then, I still feel the same about her. My advise to you is to not worry. Continue to eat healthily, get regular check-ups, limit electronics, and most of all enjoy your son! Nancy
Hi, There are theories that have not been thoroughly researched that suggest that taking probiotics will help your chances of not having another ASD kid. I don't know if it will work but it can't hurt. The theory is that the flora in the mom's digestive system is linked with autism. Good luck. Hope its helpful
I would go toxic and chemical free as much as possible. I know the theories aren't clear but environmental factors have to have something to do with the rise in autism, not just reporting increases. Check out Goodguide.com and find healthier products for you and your baby. All the best. Also pregnant
Hi, The use of anti-depressants in pregnancy has been linked to an increased risk of having an autistic child. http://www.cnn.com/2011/HEALTH/07/04/antidepressant.pregnancy.autism.risk/index.html If you don't already you can take DHA supplements on top of your pre-natal vitamins. Vitamin D might also lower the risk of autism http://www.vitamindcouncil.org/health-conditions/neurological-conditions/autism/ Anon
A close relative's 4 yo son is delayed in his language skill, does not want to read and has a hard time learning numbers. He seems to play well in a 2 kids group but beyond that, he does not seem to interact with them well and retreats to play by himself like hiding under sheets, tables or plays with his airplanes. Recently family members and some of whom are in the medical profession told the mom that her son may be in the autistic spectrum and to seek help. The mom told the pediatrician about her concerns but the ped just said her son is just quirky, like the Dad, without even seeing him nor a more detailed examination. To family members, the Dad is a case of undiagnosed autistic with many obsessive behaviors and socially challenged. He is recently unemployed and probably will never find employment again. What is especially difficul to tell whether the son is truly languaged challenged or not is the family is trilingual with French being the dominant language. The most disburting symptom is the son has an extremely high tolerance for physical pain. He would crash his body on objects while playing and never even says owie. He doesn't seem to learn from the painful situation and will repeat it. Family thinks may be something is not wired properly for pain signal to reach his brain. Finally after much efforts, the ped agreed to refer the mom to a long list of specialists and Stanford being one of the institution. But the waiting time is at least 6 months. The next referral was for a Developmental Pediatrician who does not accept insurance and an initial consultation is at least $400 per hour. Family is in San Jose area and can use words of wisdom from families that have traveled this journey...where to seek the right help without severe financial strain. Family was in denial and now starting to seek help. Much appreciated.
She can request that a Psychologist at the School District give him an assessment for services, if he is autistic he would qualify for a free pre-school or special day class, and most likely speech therapy depending on the level of his delays. It sounds like he may have at least a sensory Processing Disorder and be sensory seeking, my daughter loves to crash into everything and needs this extra input to help regulate her behavior and moods. Here in Oakland there is an agency called Family Resource network located at Bananas that would be able to give her advice, I do not know what agency is in San Jose but every county has one, she could call the one here in Oakland and ask for a referral to her local agency. Vicki
Suggest to this mother that she call her local school district and request a full evaluation. This would not end in a medical diagnosis, but would help her to get appropriate educational services if he is eligible. Good luck! Sarah
I'm so sorry to hear your friends son's dr. didn't respond right away (and even earlier in annual check ups) to his symptoms. The federal gov has an early intervention program for 0-3 yrs old that is covered 100% by the government to diagnosis and treat kids in this age range. The Regional Center of the East Bay (www.rceb.org)tests children (I think of all ages). If he were under 3 they could have rec'd free services. I recommend contacting them to see if they can help direct them to resources in their area as well as maybe government covered resources. Another resource is the public school system, particularily if he isn't speaking well yet. They should be able to test many areas for free even if he's not enrolled yet. They can also provide at least speech services now and maybe some other early intervention services. Contact the local school district office and write a letter w/a formal request. I think they have to respond within 30 days. I suggest they look up the proper language to request such services on the web and put in the school's reponse requirements in the letter to get the school district moving on it. They tend to move a bit faster if the request is in writing and the parents site the deadlines, what they are entitled to etc. Another option is to contact www.cwtherapy.com in Oakland. They have testing and services, but do cost a bit. They may be able to provide resources in the southbay too. The sooner he gets treatment, the better. Early intervention helps out both the parents in finding useful parenting tools, as well as helps the child improve or overcome some obstacles. anon
Has your relative contacted the special education folks at the boy's school district? One aspect of special education law is ''child find'--the obligation to locate and serve students with disabilities residing within the area.
Since early intervention is key in autism spectrum disorders, and since IDEA covers pre-school children as well, many districts have services. My district has a Diagnostic Team, including school psychologists and speech therapist, who evaluate children suspected of having special educational needs.
Might be something to look into. There's also the Regional Center. I'm not familiar with services in your area, but a little Googling would probably nail down where these folks are located and whether they can help. Sonia
I am planning to try for a baby, but have to admit that a fear in the back of my mind is the probability of having a child with autism. While I know there isn't concrete evidence of genetic links, it seems that researchers are leaning that way. My husband's family (all on the father's side) includes a sister with an autistic 7-year old, a cousin with a highly autistic 11-year old, another cousin with a 7-year old with Down's, and a 17 year-old nephew with ADD (same cousin). In other words, in a family with 8 cousins/peers on the father's side of the family, three of them have children with developmental disorders. While I know these kids have their own joys, I am obviously anxious at the prospect and hardship/challenges it brings. I am 36 years old and already nervous about the increased chance of complications. My questions are: 1) is there hard evidence of this tie?, 2) any advice on how to approach this fear/risk?, 3) how can I discuss this with family without offending them?, and 4) are there early/pre-natal indicators of autism in the womb? Thank you. Feeling guilty but scared
You cannot discuss this with family members who already are raising a child with special needs without offending them. You need to get yourself to a Genetic Counselor who can give you correct answers to your questions. anon
Hi! I am not giving you advice, but am going to give you some statistics about my family tree. My son has Aspergers/ADHD My brother has a degree of Aspergers My 3 male cousins have - ADHD, ASpergers and Dyslexia And I know that the older generation of men - my uncle and my mom's male cousins - all have something going on. I have been coping with a special needs child for a while now, and it takes a LOT out of you. Make your decisions with care. Wish you the best. anon
Call your provider and ask about genetic testing? Use a donor to conceive? I'd think there'd be many solutions in this area so start with getting sound medical advice. Consider your options or if you really want kids. Adoption?? mom to many
Any time you get pregnant it's always going to be a genetic roll of the dice. Having developmental disorders in the family may increase your probabilities of having a child with a developmental disorder, but there's always a chance something might go wrong, even if you don't. My oldest son has autism and my younger son had something like a 33% chance (?) of having it, too. We rolled the dice, anyway and he is so far neurotypical. There have been studies but as far as I know there is no hard evidence, and there are no pre-natal indicators as autism is diagnosed by observation of behavior and not by any hard and fast test. I'm not sure how you can discuss this with your family without offending them; honestly, I'm a little offended and I don't even know you. The good news is that since you have the family history you'll have help in recognizing the signs early, if there is, in fact, something to recognize, and you'll be able to get help early, because the earlier the diagnosis and treatment, the better the long term prognosis. Good luck. Jill
I just visited my sister's family. She has a 3 yo girl. I have repeatedly felt something was off with ''Nell's'' development. I feel she may have some form of Autism or Sensory Process Disorder. She has many non-typical behaviors for her age. I base this on development of my own child, contact w/ friends' kids, and kids' behavior at my girl's daycare. 'Nell': tiptoe walks, does 'echolalia', speaks in a bizarre lilt, squeals randomly, is obsessed w/ hair, rarely makes eye contact, will play with strands of others' hair, saying ''Hayurr!'' repeatedly, gets emotionally overwhelmed easily, etc.
However, she enjoys contact, giggles, is sweet and gentle, loves books, collecting things outside...So she isn't fully enveloped by a miserable state of being. Here's the rub. My sis and her hub. are completely oblivious to any of these things as indicators that something may be wrong. I am shocked their pediatrician hasn't noticed. I am sad sis and her fam. do not have social contact w/ anyone with similar-age kids. They live in the country and haven't sought socializing opportunities for Nell. They may start her in a preschool this Aug. I feel that may help them observe a cross-section of her age group. Maybe they'd see Nell isn't ''like'' most other kids.
I do not have a great emotional bond with sis. She's not 'California' and I am, to put it briefly. I have tried to have deep talks with her in the past. They mostly end w/her crisply thanking me for advice then blowing it off, or w/ her getting angry or mocking me for whatever I am sharing with her. She resents me for my ''having an easier go of life'' than her. She is very intelligent and has a devastating ability to cut me down and cut me off if I displease her. I fear her and I love her.
Nell has a peanut allergy which causes dark under-eye shiners. She has eczema. I worry that her behavior, sunken eyes and eczema will target her for scorn by her peers. My sis as a kid was bullied due to her own odd, shy, intelligent ways. My heart breaks as I see her daughter sewn deep in a cocoon of behavior and impulse and allergy. I feel sad that sis and her hub may never see these things. I am at a loss. Am I over-reacting and out of line, or if not - should I share what I feel about Nell? I love that little skinny scrap of a niece. I don't want her to hurt. But I don't want to lose my sis by dumping on them my possibly unfounded fears. Advice? scared little sissy
You sound like a kind sister who's trying to help! I work with kids on the autism spectrum, and it is a wide spectrum with no one looking the same. (Girls also present a little differently than boys--usually with better developed social relatedness and more socially appropriate interests.) It sure sounds like your niece is on the spectrum, possibly has high functioning autism.
Even pediatricians in urban areas miss the diagnosis, so it's important to be proactive. Also, since the earlier the intervention, the better, I would recommend mentioning it to your sister (or asking someone else to mention it) so your niece can get early intervention (from the school district after age three years). Then you'll have done everything you can do, and then you can let it go.
Allergies are common in kids on the spectrum, and some treatments take that into consideration. Some diet modifications can help some kids (gluten, dairy, etc.) I hope your sister can hear it and get help for her daughter. anon
This is more important than offending your sister; you need to tell her your concerns and get your niece the help she needs. Research shows that early intervention is a child with autism's best chance for making progress developmentally. Months and years are precious at this age, and there is no time to waste in getting a diagnosis and services to support her development. Best of luck to you in your conversation with her. I hope it goes better than you expect it will. A local Occupational Therapist
You are over-reacting, and you are out of line. This child does NOT sound autistic. And what is ''California,'' anyway? --California girl
First of all, I wish that people would not be so quick to diagnose a child with a few or even several quirks with autism. It takes a specialist to do that and even they don't always agree. There are several other things it could be. I do appreciate your concern for your niece and I don't think it is entirely unfounded. Unfortunately it doesn't sound like her parents are going to be open to hearing it from you.
You are in a very difficult position because if she does have developmental or speech problems early intervention is critical, but that is not going to be possible unless her parents are on board. Is there someone who they would be more receptive to? Another family member or a friend? If you know who the child's pediatrician is you could share your concerns with her and have her keep an eye out for the behaviors you describe. If they do start her in preschool, perhaps a preschool teacher could be of help. If you do tell your sister you think her child has autism, I can pretty much guarantee you will be met with anger and defensiveness and nothing productive will be achieved. Mom of a special needs kid
I'm the mother of an autistic son who is a preteen. Yes, autistic children stand out. Perhaps her going to school is a GOOD THING because they can have her tested and then provide her and her parents with services she is entitled to. Having an autistic child is a blessing as it shows you so many different perspectives in being a parent...just try to stop comparing...autistic children can be extremely talented in some areas...try to figure out what they are and be willing to learn something new from an ''expert.'' Be hopeful and perhaps your sis will be open to the world of autism...parents go through denial before the love for the child opens up the acceptance to a new and different world...good luck! Think positive. anon
You are a caring Aunt and I think you feel your concerns need validation with acceptance but they do not. It seems to me that your sister may feel your contempt, and though you may genuinely be concerned, unless you modulate your feelings about your sister and your niece's health she will not listen. I did not care for the way you refered to your niece. I only hope you are more compassionate in person. I also hope that even if she is a child with Autism you will support her growth with positivity and love. I do not know what ''Californian'' means being a die hard New Yorker transplanted to N. California years ago, but if you have a I'm more (fill in the blank) than you attitude forget it.
Stop comparing. Stop talking. Your sister heard you and sees other children. If her child has food allergies she is dealing with a lot. Yes, there is a link between food allergies and Autism. Talk with your sister about maybe how stressful her daughter's allergies may be for her. Get into her world with no judgement and listen. If she trusts you and feels supported she may be open to listening to you.
My son has a speech delay. I sensed it before anyone did-even my doctor. What I strongly resent and will protect him from is the way relatives and friends globalize the delay as if that is all he is about. I have seen how relatives will act differently around him. We all are different. Some of us are differently abled. What you can do is button your lips and gather resources to give your sister if the need arises. wishing your niece the best!
I feel for you. I think that because of your difficult relationship with your sister, you should just let them find out on their own. Seems to me maybe already they know that their daughter is ''different'', if they haven't already made play dates with other kids. Could they be afraid? 3 is really old to not have had some social contact with other kids. As you said your niece will start preschool soon and someone is bound to say something to them then. I know you want to intervene but it's their life. Just hope your niece will find a wonderful accepting place! anon
My 39 month old boy does seem to be an odd one. Ever since he started speaking he has had immediate and delayed echolalia, reversed his pronouns for a while, does seem to not interact too much with other kids (but is not scared of being in school). To me the most noticeable issue is that he never seems to talk to any other kid. He will happily follow a kid around but nothing is said. He hit all his motor milestones within the age range and does not show too many typical signs of autism. He maintains eye contact, is not a picky eater, no spinning objects, no self-destructive behavior etc. He does repeat entire books to himself - but when I ask him what he is talking about, he is always able to tell me.
He is very verbal but his usage seems to be developing somewhat differently...he repeats random phrases from time to time and does not seem to know why he has said a particular thing. He does have one seemingly rare speech peculiarity...he re-emphasizes the last sound in certain words...eg milk when he says it sounds like milk-lk-lk-k-k-. Neither his pediatrician or speech evaluator know what this is.
Sometimes I think he is not able to comprehend what is being said, even though I know he is trying. The other day I said, 'do you want to go now' and he echoed it back to me as 'do you want to bring a cow?' Could he have some auditory processing issues whose symptoms mimic autism?
He has passed a recent hearing test and I have gotten him evaluated twice. The second evaluator reluctantly gave him a pdd-nos diagnosis but told me that he might just 'grow out of it.' He does seem to have some sensory issues - big stores and malls cause massive tantrums, he is not really into imaginary play in a big way (though he does run around in a spiderman costume), describes every single thing he or anyone else is doing and goes into a trance from time to time.
On the other hand, he is a smart little guy. He makes some cool connections, and is very affectionate with people he knows well. He is an intense kid who seems to be improving but is not really ''on track.'' I want to get help sooner rather than later as I hear early intervention has the best results. But I am not sure what the problem really is. Others have noticed some peculiar speech stuff too - a friend thought he had a monotone going but even this does not seem to be consistent.
Any insights and advise is GREATLY appreciated. confused
Hmmmm. That's a toughie. The problem is that there's so much about autism that we don't know. Without an actual test to rule it out, we're left to just guess based on observation, so naturally you're going to hear something different from each person you talk to. Something I've learned in my journey with autism is that there's a very fine line between ''autistic,'' ''ADD/ADHD'' and ''Sensory processing disorder.'' I know that it's no coincidence that these issues affect boys at a rate of 4:1 to girls, I just don't know why (and unfortunately neither does science.)
I can tell you with certainty, however, that my son, whose diagnosis of pdd-nos at 33 months was not given reluctantly, always had excellent eye contact, never spun, never was self injurious and from the day he started speaking, he repeated what he heard. We were also told that he might grow out of it, but instead he grew ''into'' it and his diagnosis was changed to autistic disorder just past the age of 4.
It's possible that you might never get an answer to your question, in which case you'll need to be able to answer, for yourself, how important it is that you find out. I know that your goal is to get help for your son, and as soon as possible, in which case I would advise you that with a diagnosis of pdd-nos already in hand, you should head to your local school district (since he's older than 3) and start some OT and speech, possibly a home program, in addition to school. There's nothing wrong with too much intensive intervention; worst case scenario you'll find out he never really needed it. Actually, the *real* worst case scenario (IMO) is to find out later that he did really need it but you didn't do it. While it's never too late to start services, it's true that the earlier you do it, the better he'll be in the long run. Feel free to contact me directly if you want. Jill
All of what you wrote sounds fairly normal. The confusion of what is said if this was happening all the time I would be concerned. I know of several kids who thought that I said something else. Sometimes it is how one is processing the information or thinking about something. Sometimes others including ourselves we do not annunciate clearly, especially if one talks fast or does not move their tongue, lips and teeth enough to place the sounds correctly in the mouth. (By the way, on the west coast we tend to talk faster than our friends in the south.) Here is what I really think... some kids do not know how to interact with another child. (This I have seen several times.) Imagine having to interact with an animal or people from another culture if you do not spend a lot of time with them --how do you act and what do you do? (Do you ever notice a child watch a group of people- even other kids- with complete fascination or fear?) As an adult you may have to show your child how to play, and how to interact with others. Interacting with others is not as intuitive as it may seem. There are social things that some children really do not know anything about. It may seem frustrating if this is something that you take for granted and just think your child should know. Everyone is different and everyone has some learning that has to do with learning beyond reading, writing and arithmetic. Just show him how to interact and describe what you are doing. Nanny in the know
Your son sounds very much like my daughter at that age- she was a precocious talker but had odd prosidy, echolalia, memorized and used a lot of stock phrases from books and movies, sometimes out of context, and did not interact with other kids though she was affectionate at home and didn't exhibit the classic signs of autism either. We did a lot of research and got a reserved diagnosis of asperger syndrome. She displayed maybe 10 of a list of 40 common traits of asperger's. She got some speech therapy to help with pragmatic language but the most useful classes we got for her were social skills groups with a private therapist. Now she's 14 and doing great. She doesn't identify herself as having Asperger's and she fits in well at school and has friends, and she doesn't get pulled out for any special classes. She is happy and so am I. Remember that autism is a very wide spectrum. Maybe your son, like my daughter, has just some of the characteristics of the high end of the spectrum. I'd read more about Aspergers and see if the description sounds like a match. Good luck! Michelle
Your son sounds very much like my 4 year old - down to the the milk-k-k thing! He was diagnosed with ''autistic-like'' behaviors by OUSD last year, thus qualifying for autism services through the district. The psychologist told us he has Hyperlexia but that's not an actual diagnostic category.
I used to ask myself the question ''Autism or not?'' just like you. The ''A'' word is scary at first and no one wants that label for his or her child. However, in some ways, I've come to believe that whether it is or isn't autism doesn't matter. It sounds like your son, like mine, has echolalia, challenges with social language and social skills, difficulty with auditory processing and mild sensory issues. Whatever you call it, these are real issues and real challenges and you are right to trust your instincts and seek out support.
Getting access to early intervention and teaching techniques that can help your son develop the skills that don't come naturally to him is what's important now. A diagnosis is about your eligibility for those services and therapies, not a judgment about who your son is or will be.
We've had a wonderful experience with OUSD's early intervention program. My son goes to a language-enriched preschool program and has made remarkable progress in the past year. If you're not in Oakland, your district may have something comparable. The East Bay Regional Center is also a good resource.
Please feel free to contact me via email if you'd like more information. I also write about raising a not-so-typical child at http://hyperlexicon.blogspot.com/ Your son sounds like an awesome kid and the label won't change that! Christa
It sounds like Asperger's, which is a mild form of autism. The language problems are much more subtle than frank autism and are very similar to what you describe. Your description of your son sounds nearly identical to how my son was at that age. We took him to many doctors, and finally, at age six, a neuropsychologist said Asperger's. If you have a PDD/NOS diagnosis, use it to get Speech/language therapy. You probably want to look into an early intensive therapy program such as ABA, RDI, floor time. Feel free to e-mail me offline. Don't do nothing, it is so much better to intervene rather than wait and see. Also, contact your school district, but be weary of what they tell you, as they don't want ot pay for the expensive interventions. Karen
Your son sounds a lot like my son, who also has a PDD-NOS dx, but does not fit i the stereotypical autistic mold. You are right that you absolutely do not want to wait for him to ''grow out of it.'' At this age, children are developing so rapidly and the gap between him and his peers may just continue to grow wider.
Write a letter to your school district asking for a comprehensive psychological and pragmatic speech evaluation and if possible walk it into the office yourself and have them date stamp it. I am not sure what school district you are in, but try looking up the office of Programs for Exceptional Children or Special Education and address it to the director of that department. There is a process where they have to respond within 15 days, you sign a consent, and then they have 60 days to do an evaluation not including breaks, so it may not all get done before summer at this point. Once they evaluate him, if he qualifies he can be placed in a public preschool immediately that will address his needs. You can include a written report from the doctor that gave the PDD-NOS dx in his school evaluation. Also, if you haven't already, you can get an evaluation from the Regional Center to see if he qualifies for any services there. If you want to get him into some kind of intervention while you are waiting for all of this, there are preschool aged playgroups at Word Works in Oakland that focus on social skills and language or call the Angel Network in San Francisco to find an integrated playgroup. Also, have him evaluated by an occupational therapist for his sensory issues. You might want to read the book ''The Out of Sync Child.'' Good Luck. Been There
Hi - I read your post and I really felt for you and could relate to your confusion. Your son sounds very similar to my own son who is just turning three this month. We started the process of getting him evaluated about 9 months ago after his preschool teachers and others, started commenting on his odd behavior. Our little guy has the same difficulty with language you describe - the reversal of pronouns, the delayed and immediate echolia, the tendency to memorize entire phrases or sentences. He doesn't technically have a speech ''delay'' but we started him in speech therapy two times/week and he is definitely benefitting from it. Have you considered this? our insurance covers a portion. My son has trouble talking to kids, is better one on one with adults. Also you said you had him evaluated and he rec'd a pdd-nos dx. Was this from a developmental pediatrician? If so, did they recommend a treatment program for him? It might be helpful to tell you what we did in my son's case. We had him evaluated by two different developmental pediatricians (if you need names, I can help) and he also rec'd a pdd-nos dx from one and a aspergers dx from the other. My son has more sensory issues than it sounds like your son does- for example, he is always jumping in place, highly active, aversive of other things, ie. certain textures/foods. After the evals, we started him with early intervention services thru the State (regional center of the east bay), including an aide at his preschool to help him socialize with other kids, speech, occupational therapy and an afternoon program of ABA which is also helping with his language development and play skills. If your son is already three, then you have transitioned out of early intervention services thru regional center, and need to discuss the situation w/ the school district. One idea is to have a private speech evaluation done, and then call your school district and request an IEP, send them your private speech report, recommending services, and then have the SD offer your son speech therapy and whatever else.. We figured that our son might ''grow out of it'' but that a little extra help wouldn't hurt things... Even with the extra help for our son, and he is making good progress, it is still apparent that he is developing differently than other kids. if you want to talk more you can call me 847-6877 Been There
I wonder if it's Tourette's Syndrome? It's a form of compusive obsessive disorder. People can be fully functional with some odd things regarding speech and thought patterns (really PATTERNS). I would take your son to another Dr. maybe a psychologist? Sounds interesting actually, wow, he can remember whole books! Good Luck. anon
You should ask the school district for an auditory processing evaluation. Auditory processing problems happen when the hearing itself is fine but the sound gets processed in a garbled way by the brain. Your son sounds a lot like my daughter in many ways. My daughter did that thing where she emphasized wierd parts of words also and her speech therapist didn't know why either. The hearing you say one thing when you said another is classic for someone with auditory processing problems. My daughter used to repeat what people said to her so it seemed like echolalia but really she was repeating it to help herself process it. As your son gets older you can have very specific tests that break down the component parts of auditory processing. You put earphones on and then they test you for specific skills. You can have a very strong auditory memory but then mishear things frequently or not hear the parts of words distinctly or not hear against background noise. I wish I could tell you that we got a firm diagnosis for my daughter but we never did. We've been back and forth about the autism thing also and usually end up on no, she's not. I would focus on what your sons specific needs and strengths are to help him develop. You can move forward with treatment by addressing his needs (social skills help, phonemic awareness when he gets older) without an overall diagnosis. best wishes
I can't tell you if your child may be on the autism spectrum or not, but I CAN tell you that both my sons (now 6 and 9) have the same odd stutter at the ends of words, and have had it since they were small. Neither is on the autism spectrum , but both have some motor issues and learning differences. This has NOTHING to do with intelligence, (both are very bright do very well in school,) only with the ability to perform certain kinds of tasks. Some of your son's behaviours remind me of my older boy's at that age.
I would say you have valid concerns and might consider having your child evaluated. If you can get referred by your pediatrician your health insurance might cover at least part of it. The advantage of testing now is that if your son needs help in school or out if it, he can get it early, and at the very least you will be aware of areas he might need help with later.
I would love to hear if anyone else has insight into this particular odd stutter. If the stutter is causing him problems, you can get free speech therapy through your school district. It helped my younger son a lot, and made it easier to get him access to other services once he was in school, since he already had an IEP for speech.
Don't worry, but do follow up on this. stutterer's mom
Your description sounds a lot like my son who did not have a definitive diagnosis until recently. (He is 8.) He has auditory processing problems and problems with interpretting social interactions. You might consider doing research on ASD, autism spectrum disorders. If you would like to talk about it directly, email me. (Also, I run a free program for families with special needs children (ages 2-4) at the YMCA. You might find our support group helpful.) rl
Dear Confused, My 34 month old son sounds extremely similar to your son -- the echolalia, reversed pronouns, wants to be around kids, but does not talk to them, emphasizes the last sound of a word (yessssss), has tantrums at crowded places, etc. The only difference from your post is that my son IS a picky eater. Since he was under 3, we had him evaluated through the Regional Center and he received the diagnosis of PDD-NOS provisional (which means that he may or may not ''grow out of it'').
Through the Regional Center, we have recently received the following services: speech therapy, occupational therapy, in- home behavioral/ABA therapy. We are also giving him some supplements like fish oil, etc. And I have to say for the past four months, we have seen some tremendous improvements. He still has a long way to go to catch up with his peers, and he still has the echolalia and other speech issues. One thing we are going to start doing with our behavioral therapists is have some supervised/guided play dates, so that the therapist will help my son interact with the other child.
So, I'm not sure if I'm answering your question or not, but from my non-professional opinion, it does sound like your son may fit somewhere on the autism spectrum - at ''high functioning'' level, and that he may benefit greatly from therapy. I'm not sure if you've already done so, but I think the first step is to contact your school district to see what services they will provide since he is over 3. J
I think my almost 3 year old son has autism. We have a Dr. appointment tomorrow, but my day care provider has noticed the same things I have. It seems like he's on the milder end of the spectrum, but all the web searches I have done have very depressing prognoses. Can any of you tell me what autism is like when a child is school age or older? My son started speaking when he was 1 but stopped making progress when he turned 2. He can't start or keep up a conversation, and instead repeats exact phrases he has heard from his favorite tv shows. Although he makes great eye contact with me, his teachers at daycare say he sometimes avoids eye contact and prefers to play by himself. He loves to be cuddled, unlike severe autistics, and expresses affection to me and his dad. He points and wants to share what he sees but has a hard time expressing himself. He doesn't have any motor deficits, but sometimes flaps his hands when he is very excited. Not often, though. Does it get worse after 3? How much worse? Was your child like this at 3, and if you started treatment, how much improvement did you see? I am very distraught about this and would really like to hear positive stories of how your autistic child is doing. Very sad
I would be careful not to jump to conclusions from what you described. Autism is getting to be the ''in'' diagnosis for all sorts of other disabilities in speech and language and socialization. My child got that label for similar behavior and it wasn't until a friend suggested we have her hearing checked that we found out she had a moderate hearing loss. That caused her delayed speech and consequently poor socialization. You should get a thorough diagnosis first. Your pediatrician can refer your child to a neurologist, a speech and language pathologist, and a developmental pediatrician or behaviorist. When treated early, all disabilities including autism have good prognosis. It is not the label, but it is how the disabilities are treated that is the most important. Try and not worry. Progress does happen with the right suppost services. Been there too!
I am SO so sorry. By now you will have had your doctor's appointment and might probably have some more information, and I'm sure you're totally overwhelmed by all the information and options and everything. Right now you need to find some support for yourself as well as for your son.
Your son sounds a lot like mine did at that age, except mine didn't point and want to share, so that's actually pretty good news for you. Pointing is the #1 diagnostic indicator of autism, so the fact that he does point is really good. For us, things got really bad around 3.25 and stayed bad for about a year. But then things got better, and now he's almost 6 and in a regular ed Kindergarten.
You'll hear a lot from a lot of different sources about miracle diets and miracle therapies and miracle supplements, but keep in mind that not every treatment is going to work for every kid, and you have to do what's best for your child, as only you know. However, intensive treatment as soon as possible, no matter what kind you choose, will give your son the best chances. It's a lot of hard work for both of you, and you'll have a lot of different fights on your hands and it's not going to be easy, but hard work now will pay off later. My son never spoke except to recite things he'd heard on the TV or the computer, and now he asks meaningful questions and can have a conversation with a peer.
I'm sorry you're sad, I was in your shoes 3 years ago and I was very sad, too. Please feel free to contact me directly if you want to talk more. Jill
My daughter was very similar to this. She did the hand flapping, she would repeat phrases from TV shows out of context, and she had a delayed speech development. She had extreme problems with anything out of her routine, and any loud or mechanical noises (blenders, vacuum cleaners, lawn mowers) would send her into a state of total panic. At one point, the sight of a vacuum cleaner sent her into panic.
I guess that I went into denial about the possibility of autism, and focused on something called ''sensory integration dysfunction'' I took her to the pediatrician who didn't want to label her. So, we recognized there was something - we didn't want to call it autism (which I think is now being overdiagnosed, just as ADD was a few years ago) but we did know that there was something. Among the things we did - we focused on routine, and talked to her a lot if the routine was going to be broken. We enrolled her in gymnastics and music courses. The music course was a HUGE help. At the age of 4, a new teacher at her preschool asked if she was an early talker, because she talked sooo much and soooo well. We talked her through loud noises and convinced her that if she understood what they were, she didn't need to be afraid of them. (she now says about the blender ''I am not afraid of it, but it annoys me'') We worked with her a lot on eye contact. Today she is 7 - she is in first grade, reading at a 3rd grade level. She is also in an Aikido class and taking piano lessons at school. She is also making good friends at school, at brownies, and in the neighborhood. Quite the change from the little girl who never wanted to be with anyone. There are still oddities about her - but overall she is great.
Here is the moral of the story. Take a deep breath - you know your child better than anyone else. Do research, read, talk to other parents, and recognize that your child is unique. Work with your child to overcome some of the issues, but understand that the issues are real. Don't let anyone put your kid into a box. Listen to what the professionals say, but trust your own instinct. Lee
My son had similar symptoms at 3 years old as well. His diagnosis is unclear (professionals ranged in their assessment), ranging from Asbergers to non-verbal learning disabilities. Regardless of the diagnosis, the behavior therapy is the same and often effective. Initially this was very difficult for me, but my interaction with the professionals skilled in the area of child development give me great home. There is a lot we can do for these kids. My advice is to get him/her assessed by a child development specialist and get all the information you can. We see Dr. Brad Burman occasionally, a speech therapist, and an occupational therapist. Once you get beyond the ''what'' to ''what can we do'', you'll feel a lot better! Good luck- Anon
Hello! My DD does not have autism but has other developemental issues so she attends playgroups and soon preschool with kids of various special needs including autism. I have gotten to know many kids ''on the spectrum'' and their moms. I have to say each child i know who has autism is just as different, unique and individual as any other child I know. For any of our children it is so hard to predict what the future will be as each child has their own unique talents and personalities. It is hard to get a diagnosis for your child at whatever age and their is a grieving process that goes along with it for sure. But i can't tell you how helpful and empowering it can be to build a team/community for your child. Meeting and becoming friends with other families in the special needs world has been a great gift to us. We also have found a wonderful group of therapists who support our daughter and us during celebrations and rough patches. It is scary at first to be sure, but there are people out there to help you, your son and your family. Sending you positive thoughts and knowing that it does get better. Proud mom of child with special needs
It's important to know that many children with autism make alot of developmental progress with the right enough help. And most doctors won't tell you this, but some children with autism recover completely from it. Many of the current new cases of autism have to do with the interface between genetics (predispositions) and environmental insults (vaccines, pollution, repeated antibiotics, etc.) Websites to go to are: Autism.com (the Autism Research Insitiute, based in San Diego) holistichealth.com autismtreatmentcenter.org (parent training to work with your child) These are not your usual resources; most doctors won't given them to you. The fact that your child was doing better and then began to show these signs of autism points to the interaction I mentioned above; ARI (the first website above) and Holistichealth.com could be significant resources for you. I'm a parent of a wonderful autistic guy, and I don't know what we would have done without these; they've helped us alot. MK
You must be worried sick, but PLEASE don't go down that road until you have an official diagnosis, and if possible, a second opinon. A friend of mine had her daycare provider tell her they suspected Asperger's and had her running in circles -- turned out not even to be the case. There can be many complicated factors and look-alike symptoms. You mentioned you are going to see a doctor very soon. Once you get some concrete facts, take it from there. In the meantime, try not to stress! Montclair Mommy
My 6 year-old son has language delays & ADHD....the school district has done some recent assessments & they say he is right on the border for autism. I have always insisted that he is not autistic because he relates well to his family & can read expressions very well.
But, I have a question. Can someone be autistic & be able to read people's expressions quite well but still not understand other signs of social interactions? I was watching my son in the playground the other day & he just didn't relate like the other kids. He talks too close, doesn't want anyone else to get too close, gets mad when someone else wants to do the same thing he is doing (other kids usually like it when another kid joins them).
We see a behavioral pediatrician & he says my son is not autistic...I guess I'm trying to figure out if there is ''social'' type training for autistic kids that would benefit him. Thanks for any answers!
If it hasn't been done already, consider getting a specialized OT evaluation for sensory processing issues (aka sensory integration disorder). ''The Out of Sync Child'' is an excellent reference you might want to check out as well to see if you think there's a fit. Sometimes kids with sensory issues can ''look'' autistic in their social behaviors when they're with people they aren't comfortable with, but are fine with close family. And many autistic kids have sensory issues too. My kid's ''sort of austistic'' too
The autism spectrum is very broad so your son might be on the edge. It's possible that he has PDD-NOS (Pervasive Developmental Disorder-not otherwise specified). Despite the scary title, this can be a very mild condition. The son of a friend of mine has this and he's learned to make friends and has done very well in school. People with mild forms are quite able to sense emotions in others and express their own. My son, who has Asperger's Syndrome and had severe symptoms at age 6, was still able to form a close bond with me and express affection. I would recommend that you have your son evaluated and see if he does fall into one of these mild categories. There are lots of positive interventions, so even if your son does have a mild diagnosis, I'm sure he'll do quite well. Good luck. Nancy
Sigh. This is a hard one. My child also has social issues, but nothing diagnosable. Realize that the school district has to provide an IEP if a child has a diagnosis. Then the school district has to provide services to that IEP's specification. (I'm not an expert in this; my son doesn't have one, so sorry if I got anything wrong.) This is great, to a certain extent, because you don' thave to pay for what the school district provides.
In answer to your question, YES. There are plenty of programs like the one you mention. I do not know what they are in your area (I'm in the south bay) but one of the programs down here is called Friendsmart in Mountain View. The classes are called ''social skills'' classes.
Here are some links from the Bay School's website about autism (The Bay school is a school for autistic children in Santa Cruz): http://www.thebayschool.org/links/links.html
If your child is ''borderline'' some of the resources will apply.
Here is a page from my website about autism resources. Check out the Handle institute - they come highly recommended. http://www.anachronisticmom.com/Medical-KK/Autism-K15.html
I would recomment this yahoogroup ''parents of special needs kids.'' It's located on the peninsula, but has excellent resources - for all kids with any special need.
And finally, here are some links from berkeley parents network:
strawberry canyon social skills camp: http://parents.berkeley.edu/recommend/summer/strawberry.html#social
BTW, I once read about a wonderful program -- a theatre program - used for asperger's syndrome children, where they were taught how to respond ''emotionally'' in situations. It worked well. Turns out that some of our children process social interaction in a more cerebral fashion -- they don't just pick things up by osmosis. And no, that doesn't make them diagnosable. Protect him, get him some classes and help him practice and ... Good luck! another mom
I'm not an expert, but I do understand that the spectrum for autism is vast. Perhaps he's very close to the edge but still on the spectrum?
Autism is a spectrum disorder, which means there's a very wide range between ''autistic'' and ''not autistic.'' Oftentimes the line between ''autistic'' and ''typical'' is really REALLY hard to see. However, in my experience, and in answer to your question, yes, one can be autistic and still be able to read expressions well. One can also be autistic and also relate well. One can also be autistic and make good eye contact, be affectionate with loved ones, make friends and still ''seem'' perfectly typical.
On the other hand, one can be typically developing and also have trouble with social interaction; to not relate like the other kids. The question is, does your son need the ''label'' of autism in order to do well and thrive?
There are lots of groups that work on social interaction, with autistic and non autistic kids. IMO, any kid would benefit from a social skills group, so regardless of your diagnosis, it wouldn't hurt to just find one and sign up. I'm sure you'll get responses from folks who run groups, I'd encourage you to contact them!
Feel free to contact me directly, as well. Jill
Look in to Asperger's Syndrome. It was the answer for my son. read up!
Your son sounds like a unique and worthy individual and I wish you the best in helping him to find his way in the world. A few years ago, I worked with a pretty high-functioning autistic boy in a play group. I was the facilitator and we had some other children involved and we just had a couple of hours a week to practice playing. The goal was to help the boy develop better social skills and to encourage him to build his imaginative play skills. I must say that it was often really fun, even for me, and I bet your son would benefit from something like this. There is a Bay Area therapist who specializes in this imaginative play therapy, but I don't live in the area anymore and I can't remember her name. Sorry! I believe she taught/worked at San Francisco State. I went to a workshop she taught in the area once. Good luck tracking her down and finding resources for your son. Elizabeth
Sometimes even typically developing kids need to be taught social/language skills in an organized, step-by-step fashion. Your child may benefit from social skills or pragmatic language groups. Also, he may have sensory-motor and/or motor planning delays which would affect his sense of space and proximity, as you described his interactions in the park. You might want to consider having him evaluated by an OT, if you have not done so already. Good luck! anon
Hi, Autism is a very broad spectrum including Aspergers and can present itself very differently in individuals. I obviously can't diagnose if he has it or not, but a good local resource for play and social skills is Pam Wolfberg at San Francisco State in the special education department. Her focus is Integrated Play Groups and Autism. Website for Integrated Play Groups http://www.autisminstitute.com/
Another site which focuses on Aspergers and has resources listed for teaching social skills is http://www.udel.edu/bkirby/asperger/
There are other causes for difficulties with social interaction. You mentioned that your child has language delay and ADHD--have they ruled out Fragile X Syndrome? Also, has his hearing been thoroughly checked? He may have trouble understanding what other kids are saying if his hearing is muffled at all (infections, fluid build up) So he might avoid playing with other kids or learn ''bad habits'' in terms of personal space for speaking. Best of luck. teacher
My 5-year-old also has what has been labeled ''autistic-like characteristics'', yet does not meet the clinical definition of autism. Nor does he meet the definition of Asperger's, or anything else for that matter. He loves people, and relates well to his family (he is very sensitive to me and my moods), but has difficulty with social skills.
He is currently enrolled in a weekly class on social skills and social language use through Communication Works, in Berkeley. I think it has been very helpful for him - I would definitely recommend you check it out. You can get more information on their website at www.cwtherapy.com. Good luck! Emma
Autism is a ''spectrum'' disorder - there's a huge range of behaviors that fall somewhere on the general spectrum. It sounds like your son, while not fully autistic, is somewhere in that range. Dorine Slocum, of Vida Behavioral Solutions in Oakland, works with kids like this - kids who have any of a range of social-skills problems. I know she's worked with autistic kids before, but she also works with kids who just don't get the nonverbal cues (how close to stand, how loudly to speak, etc.) that make social interactions work. You can contact her by phone at 510-835-1272, or online at www.vidabehavioralsolutions.com if you prefer. Hope this helps! Kathleen
Hi, ASD has a wide range of behavioral patterns on the spectrum. It sounds as though he may lean a little more towards Aspergers syndrome. You can have him evaluated for this if you think it is necessary. Regardless, yes children can sometimes read expressions and lack the ability to socially interact. The training you seek is out there. Does he have any sensory integration issues that you are aware of? How you interpret the sensory perceptions you have, directly relates to how you interact with those around you. Depending on the severity of the problem, you may want to consult a DAN protocol doctor or see what services are offered by your school district. The latter usually requires a diagnoses though. Bryan
sounds like he might have aspergers. there are a few books out there. ones by tony attwood are good. behavavioral training is the only ''cure.''
Boy, do I feel your pain! My daughter has various ADHD type and learning disability problems depending on who you talk to and which day you see her! We had a long 4 visit evaluation with multiple raters and videotaped standardized diagnostic tests at Children's Hospital and they said she was NOT on the autistic spectrum--nowhere close. (Autism should only be diagnosed using multiple raters and standardized tests--not by eyeballing the kid.) Another Kaiser psychologist said she had PDD after 2 visits, another Kaiser developmental pediatrician said she was not on the autistic spectrum after 1 visit. For various reasons I continually wonder whether my daughter is 'kind of autistic' even though she is extremely imaginative and very outgoing (but often inappropriate) socially. I've done a lot of worrying, thinking and reading about the issue. In my opinion, this type of confusion will continue until we find a 'hard' biological marker or markers for what is now probably just a loose grouping of many similar seeming developmental issues. Since there are no 'hard' markers for autism some pracitioners use a very loose definition of autism that is increasingly including a lot of kids who are just a little off socially. In the early '90s the DSM categories widened what can be considered 'autism' and at school there are bureaucratic pressures increasing the likelihood of getting an autism diagnosis--schools can not give an ADHD diagnosis but they can classify someone as ASD. This whole mess leads to a lot of confusion, and to a lot more 'autism' diagnosis which is very much in vogue right now. I think it is important to be skeptical and remember the whole autistic spectrum is a social construction based on subjective ratings of behavior. Anyway, to answer your question, yes, your son can benefit from social skills training. Lots of kids need help with social skills. Google Michelle Winner. Her program and books are for kids with all sorts of social cognitive issues. good luck
We are struggling with how to deal with our 4.5 year old son's challenging behavior. Some background: He has been evaluated by Childrens' Hospital as well as the Regional Center of the East Bay. One group of evaluators said he did NOT have autism, the other diagnosed him as being on the Autistic Spectrum. They both agreed he had a challenging temperment and significant speech and language delays. He is currently in a special ed preschool through the school district, where he is getting speech therapy and occupational therapy.
I feel great about his preschool program and the help he is getting there. However, it has become clear to us that we really need help in dealing with his aggressive, disruptive, unpredictable and contrary behavior outside of the classroom. I feel like we need to be seeing either a child therapist specializing in spectrum disorders and the behavioral issues that accompany them; or possibly a behaviorist to work with us on a regular basis. I'm just not sure what kind of a professional would best suit our family and our needs.
Are there others out there who have had success in working with someone on their child's challenging behavior issues? Any approaches you've found useful, or professionals who have helped you would be greatly appreciated. sad & frustrated mom
I can give you some suggestions, online and offline.
You didn't specify the type of challenging behaviors, so this may not be completely relevant. It helped my son at about the same age when tantrums and aggressive actions were the problem. The first thing that helped was something called ''floor time'' therapy; we saw Jane Rubin, PhD, 510 704 8759 in Berkeley on Milvia for about 3 or 4 months, and the tantrums largely disappeared immediately. It was like magic - they really just STOPPED.
The second thing I would recommend is a behavioral assessment. There are several good organizations out there. BCRC, www.bcrc.com, is one I've worked with through my son's school. Carl Schrader is the head of the organization. They contract with the school district for aides to help in the classroom, but I think they will also come to the house and help assess what's going on. They can then help you with general strategies to help (like creating a ''what are we doing today'' board to help show the day's schedule visually, which can help organize you son's day for him - which often helps calm these guys down.)
Depending on your school district, you may get some help from them with this too. If your son needs behavioral help in the classroom to ''keep it together'' while in school, the district will arrange a behavioral assessment. You can ask them to include a home assessment component. Focus on the fact that if you are not consistently applying the same principles at home, the school program will not work as well. (It's true!) This will help sell them on paying for it.
Speech/language therapy is a huge help. Some of the reason for his behavior is probably reaction to a very mysterious and inconsistent world. If he doesn't understand what is being asked of him, and then people get cross with him for not complying, it's completely understandable that he would get mad. The faster you can help him with both comprehension and expression, the better. Visual aids like a planning board can really help with daily stuff. I probably have a Word doc of the last one we used, so let me know if you want me to dig it up.
Last thing I would suggest is a book or two. I found some of the ideas in The Explosive Child by Ross W Greene helpful. Actually it was mostly helpful to read about other kids who were as bad as or worse than my own... as I had already implemented a lot of the strategies he had talked about. But I only read it last year.
I hope this gives you a couple of places to try. I'd be happy to talk or email offline too. My son's now 9, and while he does still have explosive outbursts, they are far rarer than when he was 4. Also we know the triggers far better now. Nancy
Send a letter to your school district, requesting a ''Functional Behavioral Assessment.'' Since he qualifies for special education and has an IEP, the district is responsible for his education, which means how he acts in the community (outside of a structured school setting) and at home. A psychologist from the school will assess and then there will be a meeting to create a behavior plan. I *think* this could also be handled with a new IEP -- legally, you can call a new IEP whenever there's a need to change the child's program.
Here's a link to a sample letter: http://www.bridges4kids.org/IEP/FBAPBSsample.html
If the district says no, then send a similar letter to Regional Center, and tell your case worker that you are willing to go to Exceptions and Appeal if necessary.
Both the school district and RCEB have behavioralists. You could definitely ask RCEB to send someone like the Lovaas Institute, which is a RCEB vendor locally.
At some point, it would be helpful to have a diagnosis by a trained, experienced neuropsychologist. If the testing was just 2 hours done in a tiny room, that's not much help. Elsewhere on the website there are some recommendations for neuropsychs. Anon
We had good success working on some behavioral issues with Behavior Analysts in Pleasant Hill. One advantage of a behaviorist is that they can observe your child and see the behaviors that occur in challenging settings and then draw up a consistent behavior plan that all the specialists can use. Good luck. asymetry
I'm just beginning to read about the autism and dairy intolerance link and feel a little panicked about my 11-month old, who definitely has a dairy intolerance. Does anyone have any ideas as to the percentage of kids who have dairy intolerance, versus those who go on to have the onset of autistic-like symptoms around 1 year and a half? While my son is very social and outgoing, he does exhibit behavioral quirks that worry me (selective listening, lots of babbling but resistant to gestures/signing, doesn't wave hello, goodbye). Am I just being paranoid or do I need to put him on a strict gluten dairy-free diet and (maybe even) have him tested? Advice, please! worried mom
Sounds to me like you're being too concerned. My son didn't like signing either, and he didn't really do a lot of talking until after 2.... Just remember that kids ahve a lot of different performance levels. a mom
Breathe easy. We moms will find just about anything to worry about, but I think you can let this one go. Being intolerant to dairy is NOT a red flag for autism. Before you start to self- diagnose (which is always a bad idea in my opinion)please talk about your concerns with your child's pediatrician. That's what they are there for. Fellow mom
I can't help you on the science, but it sounds like your kid is pretty normal. Your description pretty much described my now 21-month old daughter at 11th months. She had icky major dairy issues (vomited up even the slightest bit of cow or soy milk mixed into a food such as pancake batter); she pointed, but didn't wave; ignored any attempts to teach signing; only used two words (mama and dada), but not necessarily correctly; etc. The dairy issues disappeared with her first birthday (almost to the day) and the only bizarre symptoms that she is showing now sadly are typically associated with rising two-year olds. Her verbal skills are about right, maybe a little behind, but she and I communicate easily. She is ******ly well adjusted (far better than she was at 11 months when she was suffering from a bad case of the 'Mommies'). I realize that autism is more of an issue for boys than girls. I am not discouraging you from getting it checked out if it helps you sleep better at night. but, it sound like your kid is normal. -Been there
My son was diagnosed with autism at age 2.2 years. I knew something was up with him at about 1.5 years (didn't understand language, in his own world, not interested in other kids) but waited since everyone said I was worrying too much, etc... At the two year visit with the pedi, he referred us to the Regional Center of the East Bay for assessment. It took 2.5 months after that to get the visit with the doctor -- 2.5 wasted months. We have him on a GFCF diet now and it's really not that bad once you get your head around it and find good places to shop. I've put my older ''quirky'' son on it too. I would strongly urge you not to wait but go get an assessment thru the Regional Center right away. I had to call them about 3 times before they called back. Then they sent a big packet I had to fill out describing my son's behavior etc... Then they set up an appointment at Children's Hospital. Even tho I was devastated to get the diagnosis, at least it gives us great services thru the Early Intervention program in California. Just be glad you live here! mm
Autism is such an uncharted subject that's really finally coming to light. My youngest brother, who's 12 now, was diagnosed with Autism when he was 3 years old. If my parents had known more about they're options and had better medical advice then i'm sure the steps they could have taken might have been more preventative or even just encouraging. They did choose to take a very homeopathic approach, though, which has been the most beneficial. Around the time he was diagnosed,there wasn't much information except what was being passed off as conspiracy theories, etc. So, they changed his diet, chose only organic supplements, cut all dairy and any processed glucose and sucrose products from everyone's diet and although you can't make the autism go away, you can improve his lifestyle by being focused, supportive and very aware. In fact, if this is a path you choose to take, it's recommended that everyone try to stick to the plan. There are more and more books and information being published so, you are luckier than they were. But, really, if you are concerned, take him to see a specialist. Because early intervention is you're best weapon against the odds. Good luck!! Alena
My sister and brother-in-law have a daughter who just turned a year old. She has been described by a nuerologist as globally developmentally delayed (50%), probably having a communicative disorder or disability, possibly on the autistic spectrum and not probably, but possibly having rhetts. She is very very cheerful and smiley, but is just starting to sit up, does not crawl or walk, does not babble, mimic sounds, track or make eye contact or respond to her name or other sounds. More testing is being done, but they won't have a specific diagnosis for at least a month (that would mostly be if it is something testable like rhetts) or much much longer. There's more, but I wanted to paint just enough of a picture to ask those who have been in a similar situation, or know someone who has, what are good ways to support my sister and brother-in-law? what are things we should definitely not say? what are things that might be helpful to say or do? I've been doing a bunch of reading (as are they) and I know everyone is different, but I thought it might help to hear from people some specific ideas of how to be supportive. Thanks.
seeking to be a supportive sister-in-law
Please be kind and sweet,,its hard especially when other parents point out what the child can not do. Regional center of oakland is a great place for them to contact. They have lots of people that can come to the house or your family can take them to the center for help. Just be their and be supportive and no negative remarks. Hope this helps
I just wanted to comment on some of the characteristics you describe - a friend's baby had very similar symptoms and was finally diagnosed with Angelman's Syndrome. As that is very serious, I hope that's not the case for your sister's baby, but I thought I'd mention it since it's a rare and apparently often overlooked diagnosis. In terms of how to be supportive, I've found with my friend that just talking openly about how his baby is doing, what they're going through in terms of tests, etc., and how he feels about it all, as well as allowing him to talk about something ELSE works best. He relayed a story about a friend of his with a son with developmental problems that were hard to diagnose, and that the worst part for that person was that the only thing people ever talked to him about was his son. He felt like everything else he used to have in common with his friends just disappeared, though he realized they were all just trying to be sensitive. Anyway, hope this helps. Star
Hi, First off, just wanted to say how very kind I think you are to be asking for constructive advice on supporting your brother and sister-in-law in this situation. One of our daughters has autism, and those friends and family members who've worked to educate themselves about the disorder have made a profound contribution to our household's sanity and general quality of life.
It sounds as though they may be dealing with Rett Syndrome, but if your niece's diagnosis is, ultimately, that she has an autistic spectrum disorder, I would highly recommend reading the book LET ME HEAR YOUR VOICE by Catherine Maurice. While her children's ''recovery'' is extremely rare, she gives an excellent overview of appropriate therapies and the history of the disorder.
I wrote an essay several years ago about things our family had found most helpful, titled ''Being There: What You Can do For Parents When Tragedy Strikes.'' I'm sure it's not a universal solution, but I just wanted to put together some ideas, some things I wish I'd known earlier when I struggled to comfort pals who'd gotten hit with scary and sad situations.
You can access the piece at the following URL, if you think it might be useful, and you don't have to register or anything to read it:
The most important essay I've read over the years, however, has been Emily Perl Kingsley's ''Welcome To Holland.'' She's an outstanding writer, and (I think) manages to be both profound and comforting in this short piece, without ever venturing into bad Hallmark-card world. The ''official'' version is available here:
Again, I commend you on your approach to all of this, and I hope things turn out well for you and your family.
First of all, you're already doing one of my suggestions and that is educating yourselves as much as possible so that you understand what your niece's limitations/challenges are and won't expect too much of her as a result of knowing. You will also be able to empathize with your sister's situation and that is always helpful. My sister did try to educate herself but I didn't get too much support from my parents because they weren't forward thinking enough to say that my son had a disability. They just wanted to think it was me not parenting him the right way. It has gotten a little better but I still wish they would educate themselves more, that's my biggest wish. Otherwise, trying to give her a break would be another suggestion. Your niece needs to be able to get a break from her parents too so if she had that comfort level with you, that is so helpful. And it's a comfort for the parents when it's someone that understands that the child is not a typical child. One more suggestion, if it's feasible, is to try to go to appointments/therapy sessions with her if you can. Sometimes the doctor will just need to talk to her or give his feedback and helping with the baby would be helpful and to just be a support for your sister. I hope this was helpful to you. Mom of autistic son
Questions about resources and support
My 2.5-year-old nephew has been diagnosed with autism. He is barely speaking, is developmentally delayed (late hitting most milestones), rates low on adaptive skills, and has some stereotypical behavior (hand flapping), but he seems happy and is very affectionate with his parents (shy with others). He is just starting ABA services through BIA and speech therapy through Easter Seals. We are also beginning the IEP process (parents live in Oakland, but might be willing to move if another district offers better services). I'm looking for advice on parent advocates/lawyers (and how important it is to hire and consult with one), service providers, preschools, support groups for the parents, informative/reliable/helpful resources (books, websites), activities to do with my nephew to help him develop, and how to be a good aunt in this situation. I know that's a lot, but if you have experience with a similar child I'd appreciate any advice you could give in any or all of these areas. Thanks. Concerned Aunt
Our service coordinator from GGRC highly recommended we go to JumpStart (http://www.autismjumpstart.org) -- they are in San Francisco. Maybe you guys have something similar in the east bay or maybe you guys could go to JumpStart. It's a one-week, intensive training program for parents/adults of autistic children. The therapists there are incredibly nice and knowledgeable. I personally found the course very empowering. It taught me better and proper ways to better communicate with my 2yo ASD child -- both verbally and non-verbally. The course is very intensive. I was overwhelmed at first but it's really worth it. mom000
Hi there.. The hardest part is in the beginning (when BIA comes into the home, coordinating therapy ) your sibling is off to a great start! I worked for BIA for years and they are amazing. You'll see a lot of progress. I've worked independently for 10 plus years in the field. I'd be happy to answer any questions or advice on IEPs, advocacy etc. Lindsay
Please have your nephew's parents contact Sandy Westlie (director) at Peter Pan Preschool in El Cerrito (not to be confused with Peter Pan in Oakland!) She will be a valuable resource. My child is not on the spectrum so I cannot speak to your nephew's situation directly, but other parents at the school have expressed that Teacher Sandy was the best thing that ever happened to their family when they were struggling to address the needs of their autistic-spectrum child. (It doesn't matter that your nephew is in a different county. At the very least, Teacher Sandy will be able to give you great information about resources.) Peter Pan's number is (510) 234-5918. Best to call between 3-4pm on a school day. School will be out until the beginning of Sept. (Feel free to ask moderator for my email if you want more contact info.) Maia
I've previously recommended on BPN the book Parenting Your Child with Autism which was written by a good friend and colleague of mine who also happens to be the parent of one child diagnosed with autism and one diagnosed with Aspergers. The book starts with the premise that there is no ''prescription'' for how to handle your child's needs, and as such they help explore ideas and resources so that you can evolve your own strategy for what is going to work for your family. The book is evidence-based (with references) but it's not too jargony and it's an extremely readable work. You can find the book on Amazon: http://www.amazon.com/Parenting-Your-Child-Autism-Strategies/dp/1608821900/ June W.
My son was diagnosed with high-functioning Autism a few months ago on his 3rd birthday. I really want and need to get plugged into Autism resources, communities and groups. I could probably post a question a week on BPN, but recognize there is probably a better forum for all of my Autism-specific questions. So please share, point me in the right direction... online boards, communities, blogs, books, groups conferences. Also, is there anything local/east bay I should know about?
As background to help guide recommendations, we anticipated the diagnosis and have been doing intensive ABA and speech early intervention for the last year (through RCEB). We're ready to move forward, eyes open and want to have all of the resources possible at our disposal as we do so. I see that my son has a beautiful and unique mind and I want to celebrate and foster it, while addressing challenges that might get in the way of his learning or making friends. He's really high functioning, and since he's only three, it's hard to know what that really means.
I really appreciate and look forward to your recommendations. -Mom of a High-functioning Autistic Boy
Hello Mom, I too have a 6 year old son with autism and I live in the east bay. Have you heard of the CARE parent network? http://www.contracostaarc.com/html/care.html They have monthly support group meetings and tons of resources. Also the Autism Family Support Project at We Care in Concord http://www.wecarebmcc.org/autism_project/afsp.htm They have support groups and autism family friendly events. Also there is the UC Davis MIND Institute http://www.ucdmc.ucdavis.edu/mindinstitute/ and if you go to their web site there are plenty of new autism studies you can participate in. We are currently participating in the Curemark study, a study on a new enzyme used to treat autism. Have you tried a DAN doctor yet? http://www.autism.com So many things to list here better to email me! Sounds like you are on the right path though. Hugs! Alicia
When my son was first diagnosed I spent a whole lotta time at http://www.autism-pdd.net/forum/default.asp. I could probably list about 8 million different blogs for you, but I'll save the space and ask you to email me if you're interested; I've also recently found a thriving autism community on Twitter. You didn't mention your school district, but if you're at BUSD there's BSPED: http://www.berkeley.net/index.php?page=bsped. I hope this is helpful, there's a ton of stuff out there, if you need somebody to help guide your way, feel free to contact me directly. I've been there! Jill
There was a really great TED talk about research at Harvard on the autism spectrum. Half of kids in the study actually had brain seizures (as shown by EEG) and came to full functioning with medication. Here's the link: http://www.ted.com/talks/lang/eng/aditi_shankardass_a_second_opinion_on_learning_disorders.html
Not that this changes the need for other resources, just thought her perspective as a neurobiologist was useful. good luck. anon
I'm forwarding here a reply for my request for resources from another ''autism mom''. Reply to me directly and I'll connect you to Anne if you so desire. Good luck, Richard
''Well, both the autism e-mail lists I am on are based in Washington, so a lot of the announcements & so forth would not be helpful to her. I'm thinking that a local support group might be more appropriate for her. Fortunately, they are springing up all over the place. (Well, it's not really fortunate, because it means that more & more people are being affected by autism!)
If she goes to www.tacanow.org (Talk About Curing Autism Now), they have a list of local groups. And they have some information on their site.
The Autism Research Institute has a site at www.autism.com.
And there is also www.generationrescue.org , which can set a person up with a ''Rescue Angel'' in her area -- an autism parent who has been in the trenches a while, & can offer advice & support. (This is the group that Jenny McCarthy has thrown her support behind.)
Do warn this woman that people in the autism community are VERY opinionated, & everybody thinks that what worked best for HIS kid is what EVERYBODY should do. The fact is that autism is VERY complicated, & there are a lot of nuances & variables. Tell her not to let anybody push her around. Anne
My brother has an autistic son diagnosed around 3 years old when he suddenly stopped speaking. He and his wife turned to the UCLA Medical Center for help and seemed quite satisfied there. This was over the past 20 years so things may have changed but it is worth a look I think. anon
One great resource is http://www.aspergersresource.org/. This website is all-inclusive and provides Bay Area resources. Hope this helps!
I'm sure you'll get a lot of responses, but let me add mine to the mix.
My son was diagnosed with HFA around his third birthday as well. He's seven now and doing great in a mainstream 1st grade class. Early intervention really is key, in my experience, as is a positive outlook of acceptance and a love for your child's gifts and strengths. Sounds like you've got both of those!
Check out The Thinking Person's Guide to Autism, website and community with national reach, run by a bunch of local Bay Area folks. They have essays and articles every day by parents, practitioners and people who themselves are on the autism spectrum. It's a wonderful source of positive support and science-based information. http://thinkingautismguide.blogspot.com/
The book ''Quirky, Yes. Hopeless, No'' has tons of advice and ideas for working with everyday challenges.
Finally, I write about our family's experience at http://hyperlexicon.blogspot.com/ and would be glad to answer any additional questions that come up for you via email. You're not alone! Christa
1) The Family Resource Network, in the Bananas building on Claremont Ave. near the DMV - http://www.frnoakland.org/
and 2) Einstein's Clubhouse, info about homeschooling Asperger kids in Berkeley, online at http://EinsteinsClubhouse.org John
We are finally in a place where we sort of know what we're dealing with and starting to understand what we can do to help manage some of my son's issues, but I feel completely traumatized by the last 5 years of meltdowns, being stared at, the daily struggles, etc. etc. I'm hoping there are some books, like other parents' stories that can help me start a little bit of my own emotional recovery and get some better perspective. I'm hoping to start with a cheaper alternative to therapy for now. Any recommendations? anon
Please read this compelling blog: http://hyperlexicon.blogspot.com/
East Bay writer/BPN mom Christa Dahlstrom does a great job of describing the fears, challenges, and fun of parenting a 6-year-old on the spectrum over the last three years or so. I'd recommend you check out some of the excellent blogs she links to, and/or contact Christa via on her her 'comments' section. Best of luck to you & your child.
I don't know how old your child is or what area of the spectrum you are dealing with, but I went through much the same with my son, who has mild Aspergers. When he was 2,3, and 4 and even older I couldn't take him into any store or restaurant without him having a tantrum and shrieking, and not hearing a word I said to him. Naturally everyone was staring at me like I didn't know how to control my kid. Now he is 10 and 90% of the time he is pure joy. The rest we are dealing with and he is aware of his issues and working on it. It gets so much better. That is my message for you. He/she is probably very intelligent so if you nurture that side of him/her you are on the right track. Read aloud and take him/her to the library a lot. And hugs, hug him/her when he/she is getting over his/her tantrum. Don't listen to the 'experts' who tell you to ignore him/her. Hug him/her. They crave that. I wish you lots of patience and love. been there
I am very worried about my sister who is having a hard time coping with her autistic 5 year old son. I am looking for advice and recommendations for resources in Santa Cruz or San Jose. I think there are many issues going on, including my sister's depression and isolation which makes it hard for her to get good help (she is married and has a supportive husband, but it is clearly not enough). She is pretty pessimistic about his chances for sucess in public school and feels her only hope is to home school him. Another issue is what can I and our other family members do to help her and her son? She has trouble asking and when I make suggestions I often feel as if I am judging her for not doing things right. I want to support her but I also think she needs to deal with her depression so that she can be a better advocate for her son. She has had horrible experiences with doctors and meds, so I don't know how likely she would be to seek help from a psychiatist. I feel as if my post leaves very little for people to suggest, but I am hopeful. Thanks for you help. anon
First, I want to say that it's so GREAT of you to want to reach out to your sister and help her. Having a child with autism is extremely difficult and she needs your support, it's wonderful that you care so much about her and her son. I don't think your post left little for me to suggest, but without knowing you or your sister or her son, I can only tell you what has worked and not worked for me with my various extended family members.
My first thought is that she probably does feel judged by your well meaning suggestions. I'm not saying that you ARE judging her, but there's a good chance that she already feels judged by the rest of the world, and therefore does from you, too. This is hard stuff, in addition to being depressed, she might be blaming herself, she might be resentful of your children (if you have them) who are developing typically. She might feel isolated or lonely or guilty or angry or just so many other things.
Therefore, I would recommend not making any suggestions. Instead, ask her what she needs from you. Something like ''I love you and I want to help. What can I do?'' And say it a lot, particularly if she has trouble asking for help, she could say ''nothing'' at first, but after the 10th time of asking she might tell you something. Make sure she knows that you're there to support her and not to tell her what she's doing wrong (not that you are! That's just how she might see it.)
Secondly, I would learn all that you can about autism. Not so that you can teach her anything, but just so that you can be armed with knowledge. And tell her you want to learn. Ask her what her most important resources are, what websites or books you can read. Make sure she knows that you want to make an effort so that you can help her.
And, she needs support, but not from you; from other parents who have been there. And the beauty of the internet is that it doesn't matter where you live, you can find people anywhere in the world. I have a large network of friends with autistic children, and very rarely do I ever see or talk to them in person. They live all over the world, and yet we ''speak'' every day. Some possible resources:
http://php.com/ - Parents Helping Parents. Located in the South Bay somewhere, it's the best chance of finding real life people to connect with
http://autism-pdd.net/ - Lots of good info, including a very active support forum.
I have more, but none that I'm comfortable posting to the world. Feel free to contact me directly if you want more info or just want to talk some more. Good luck!! Jill
There should be a regional center in her area that can offer some sort of assistance. kevin
I think you and I must be in parallel universes. My sister has very similar problems (for similar reasons) with her almost five year old autistic son. I recommend that your sister contact SPIN (Special Parents Information Network) located in Santa Cruz County. Contact them at www.spinsc.org or (831)722- 2800. She can also contact San Andreas Regional Center to see about qualifying for their services. She can also call the Santa Cruz County Office of Education for help through the school district. Good luck, I understand your desire to help and the frustration and sadness that go along with watching a loved one struggle with obtaining help for their child. Feeling helpless too
I am looking for a private special school for my brother who is a bit autistic and has epilepsy. He will be here with his tourist visa while staying at my place in Rockridge during this summer 06. He is 25 years old and speaks only Korean but very familiar with English language. He is a dedicated Christian, who is warm at heart and very innocent, almost like a boy. In Korea where he lives, there are almost no opportunities or support for people with mental disabilities. I am an only family he's got and luckily I was born here in the states that I wanted to extend some help for him here in the states. I understand that he won't be able to get into state-run programs such by east bay regional office, because he isn't ''american'. So my challenge is to find private organization or institution. However, I am having a hard time with getting such information. I would really appreciate any advice or information if possible. loving sister
You could try contacting ILRC (Independent Living Resource Center). website: http://www.ilrcsf.org 649 Mission Street, 3rd Floor, San Francisco, CA 94105-4128 (415) 543-6222 \x96 Fax (415) 543-6318 - TTY 543-6698 Email: info[at]ilrcsf.org
There is also the Family Resource Network at 5232 Claremont Avenue. Oakland, CA 94618. Tel: 510/547-7322 website: www.frcnca.org/region3.html I found the staff at FRN to be really helpful. You can make an appointment or drop in and talk to someone about your situation and they will link you up with different services or provide you with information about different programs.
It might help too if you are clear about what you want for your brother, i.e. to learn English, to socialize, to have some fun things to do during the day, to get physical or occupational therapy, do art projects, work on academic skills, etc.. Good luck and best wishes. mma
Parenting an autistic child
Hello. I am currently pregnant with my second child. Around the time I learned I was pregnant, I also learned that my first child (now 19 months) has autism. I am very stressed all the time from the effort it takes to fight the regional center and insurance to try to procure services. I write letter after letter, file appeal after appeal, consult with moms, attorneys, etc (it's been 3.5 months and still no services, even though no one denies he has autism) . All this, and my son is not an easy child (e.g., very limited communication skills, needs to be engaged or he stims all the time, always hurting himself because of poor balance and he doesn't understand ''no,'' still doesn't sleep through the night, etc.) Because no one knows what causes autism, I find myself stressed all the time that I will do something that will hurt this baby, too.
If anyone out there has been through a similar situation, I would really appreciate hearing how you managed your stress and coped with all the uncertainy during the long 9 months. Thanks anonymous
I feel your anxiety and understand that it is such an uncertain time. I have two boys, 19 months apart. My 3 year old is Autistic, my 19-month old toddler is not. When I became pregnant, we didn't know our older one was Autistic, but it slowly became apparent after our second was born. Our second son is not autistic, quite the opposite, in fact. I feel like he's such a gift to my older son...he forces him out of his own little world, forces him to be social, and they laugh and play together. A perfect social companion and life-long wing man!
My last year, however was really stressful. We bought a house, moved to Oakland -- at the same time we had an infant and our 2-year-old wasn't talking and was showing autism red flags. I did go through the Regional Center East Bay for evals/services and had a really good experience. It all felt slow getting off the ground b/c I felt such urgency. We ended up private paying for speech therapy 2x's/week until the RCEB services started up. We were granted 25 hrs/week of ABA therapy (which STE Consultants administrated) and 1 hr/week of private speech (Word Works). The early intervention services were amazing and really kick-started my son's ability to communicate (he was 2 yrs 5 months when the intervention services actually started and he couldn't talk or even communicate a simple need.
The good news is you caught it really early, you are on it. The services will start. I can't advise you with RCEB, because we had a good experience. (It did feel slow, overwhelming and confusing though.)
Life feels out of control for you right now, and that is so hard. Things turned a corner for me when my son started talking and communicating. A little time had passed, I was getting used to the dx and I finally had the perspective to see that he was going to be ok. Life was different than I had envisioned it, but we were re-calibrating and we were going to be ok. And that's the scariest, most stressful thing -- when you can't see down the road and you don't know if he's going to be ok and you don't recognize what's happening to your life...and you're expecting. I hope you're soon able to get to that place where you realize that he's going to be ok. Be kind to yourself too...you're a pregnant lady after all. Be well, hang in there, you will feel so much better when those services are in place. -Mom of 2
I just wrote the previous post - Mom of 2 - and thought of some practical advice too -- I'm sure you're probably doing a lot of this already:
- get a dedicated file box and keep really good files
- get a dedicated notebook and take dated notes on everything...get everyone's name and contact details
- ask your insurance agency for a case manager for your son
- document everything w/ insurance, have things/promises sent in writing. (I got bogged down here b/c my insurance was slow in getting me docs that proved that he was denied coverage)
- follow up follow up and stay on people's radar when you're trying to get the appropriate docs from them.
- consider getting him into speech therapy asap if you can afford it -- at least it is some intervention; get a therapist who has experience w/ autism.
- if you live in the east bay, make a call to the Family Resource Network alameda co. and get their advice on how to proceed. If you're out of county, they can probably tell you who to contact. http://www.frnoakland.org/
- keep notes about his development and when things happened, what concerns are. You'll be asked about them ad nauseum and you'll be surprised what a blur this whole time is.
- if you know the regional center is going to pay for ABA therapy, you could look into getting a Floortime therapist to start coming (something you pay for) as a stop-gap and to help give you some tools to work with your son. We didn't do this, but it could be an adjunct to ABA and something you can start while you wait. You can also get a DVD training course on this approach.
- I found reading books about Autism just sent my anxiety levels through the roof. It wasn't helping. So I really did set the books aside until it wasn't all so overwhelming.
- When Regional Center's services start, you are entitled to respite care. Take advantage of this. (Depending on your income level they either pay fully or partially for a babysitter so you can take care of yourself.) Do you swim? Now's a great time to start. It's peaceful, meditative time to yourself, great exercise, inexpensive and a wonderful stress release. Yoga is too. Start something that is just time for you. Mom of 2
Wow, I could have written that exact post, but 6 years ago. I would say the number one thing that helped with my situation, at any point during my autism journey, was having a support group of moms in the same place that I was. Mine was/is online and an online support group, IMO, is as good if not better than anything you could find in ''real life.'' Feel free to contact me directly if you want to talk or if there's anything I can do to help you with what you're going through. Jill
I just wanted to extend my sympathy for what you are going through. The way you describe you son sounds so much like my son. One thinks it is the big symptoms of autism that are hard (poor communication, tantrums, stimming etc) but even things like 'poor balance' are hard - for us the poor balance can just drive us crazy - our son is constantly whacking us by accident, grabbing at us to keep from falling, banging into things, knocking things over - it is physically exhausting to be around him.
We didn't have any more children (too exhausted!) so I didn't experience dealing with stress while pregnant but I had to write because I felt so bad for you.
Re the stress, I agree, it is really important to keep the stress levels down while pregnant - there are several studies now showing that extreme stress while pregnant can be very detrimental to the baby. The question is how...
1. join SID-DSI_AllAboutKids [at] yahoogroups.com - it's for kids with sensory processing disorder so it is more of a spectrum group but gives a lot of emotional support & info on getting services in the school but it is nationwide. Another good one for just the Bayarea is Autism-Biomed-Bayarea [at] yahoogroups.com. I would post your problems with getting services on both these groups along with your stress question and see what responses you get - I think you'll find it very helpful.
2. Get a babysitter, even if I had to borrow money to do this I would, for the rest of the pregnancy and for the first 3 months after birth, it is so important to control your stress right now. Even if you already have a few hours free each day from your son, he may be too stressful and so you need MORE time.
3. Thought I'd just throw this out there in case you aren't already doing it - put your son on a gluten free casein free soy free diet. When we removed casein, we lost 50% of our sons symptoms within 2 weeks. This is NOT the case for every child, only those with a problem with casein. In our case, it was very obvious that he had a problem with casein (dairy) as he wanted only dairy and tried to refuse all other types of food. If you find yourself saying 'but if I remove xxx then he wouldn't eat anything (fill in the blank with milk, yogurt, or bread, noodles, etc) then that is a red flag and probably a problem food that may be causing many problems.
I am so sorry for your stressful situation and please know there are people out there worried for you and sorry you have to go through this. anon
My oldest is autistic and I also have two neurotypical younger children. My second was conceived and birthed before the diagnosis. I got through the third pregnancy knowing the new baby would be on an extremely delayed vaccination schedule and believing that would and did make a difference. I also tried to make the best dietary choices I could. I urge you to checkout Julie Matthews http://www.healthfullivingsf.com/ who is a nutritionist dealing with both autism spectrum disorders and prenatal care. She can give you the best advice on what to eat and do during your pregnancy and what to avoid. Also, you should read Rodney Peetes book, Not My Boy! He has a great section on siblings at the end. This child may just be the best ''therapy'' for your older one! Lastly, I would envision everyday the joy you are heading for in raising a typically developing child. Siblings of autistic children tend to be extremely intelligent, mature, caring people. Congratulations!
If you do not already know about Peninsula Parents of Special Needs Kids (PPSNK), I would encourage you to join this local listserv. Although the members are largely on the peninsula/south bay, the posts are often about more general advise so that location does not matter. It is a very active and helpful community run by a terrific moderator who herself found out her son had autism while she was pregnant with twins. Her son is now 10 years old and she has recently published a book called ''Coloring Outside Autism's Lines: 50+ Activities for Families with Children with Austism.'' The listserv is a yahoo group, and you can subscribe at groups.yahoo.com/group/peninsulaparentssnk/ (I think). Best wishes to you. Stephanie
My 10 year-old son who is special needs, obsessive compulsive, and autistic seems to go out of his way to make me angry at him. I had a baby over the summer and have an 8 year old son and because of my 10 year-old's behaviorial issues, I have to homeschool him. He is an extremely challenging child and has been since birth. He still has tantrums and will burst into a rage in public if he doesn't get his way. He's always mad at me for something and will tell me he hates me. When he gets his extreme fits for a toy or an outing, I try my best to be patient and walk away from him if I find my head wanting to explode into a headache. Lately, I have felt extremely tired and frustrated that upon my boiling point I start yelling him to stop, he'll start laughing and laughing, whicn only antagonizes the situation. I know I can't spank him because I'm afraid of my own strength and worry I may get carried away. My parents aren't available to give me a break as they're too dysfunctional. My in- laws aren't helpful as they are always judging me and my husband on our son's behavior, which is not a reflection of his parents. I feel utterly frustated, exhausted, and exasperated as he takes away so much of my energy, and guilty I can't give as much to my younger two sons. Sometimes I just wish I could walk away and never come back but he worries me so much as he has a hard time making friends and seems to be jealous of my middle son but thankfully not of the infant. I feel pulled in all directions. My husband is hands-on and will take him to the park, help with school work, take him to activities, just take him for a walk after dinner, and spend quality one on one time with him and the other boys, so he does what he can after his full time job, but I don't know if I'm just tired having just had a baby. Please no negative posts. Negativity doesn't help me. I have heard more than enough from family and close friends who simply don't know what it is to live with a child like this. Thank you. Sad Mom
Oh wow, you have your hands full! I wonder a few things; is your son getting appropriate therapy? Is there the possibility for family therapy with someone skilled with autism? Are you absolutely sure homeschooling is the right choice for your whole family right now? There must be good schools out there for autistic children, but I'm guessing they're all private. If you are sure about homeschooling, I would recommend something called Enki Education...www.enkieducation.org, which has been very popular with parents of children on the autistic spectrum because of the attention given to sensory integration. In addition it focuses on the parent-child relationship in a very positive and unique way. At this stage there is no fixed curriculum available for your son's age but a consultation with the director, Beth, may be extremeley helpful in addressing your concerns.
Now, last but NOT least, you need to focus on self-care. Space and time carved out for yourself, maybe meeting with parents of special needs children in a support group, or just taking time out to meet your own needs. You have taken on a huge job, and will burn out fast without support and care anon
My child has special needs and here is my advice to you. PLEASE get some of the help from public agencies that you are entitled to. First, send your child to public school immediately. This will give you a break and if he has behavioral problems at school this is the school's problem--NOT YOURS. I can't stress this enough. A special needs behavior problem that is happening at school is THE SCHOOL's problem--NOT YOURS. They have to do what they need to do to control his behavior so that he and the children around him can learn. He is entitled to a free and appropriate education and you should not have to home school him because of his behavior issues. If the local school won't work for him then they need to send him somewhere else that will work like a special day class or a place like Alameda Children's Center. Depending on your school district the school psychologist or district behaviorist may be able to come to your home to help with behavior problems if they interfere with him doing homework. I doubt that your son is really ''autistic'' since so many kids with problems these days are given that label and it doesn't mean much anymore. (Besides you mention that he is jealous and that he does make friends.) But if he really is ''autistic'' you may be able to qualify for additional help from Regional Services including a behaviorist and some small amount of money for respite care. You are doing an enourmous amount of work right now--I can't even imagine trying to do what you are doing! Please give yourself a break by calling your local school district's special ed. department and starting the whole evaluation and placement process. It will be good for your son to be in school with other kids. Keep after your school district--it is the federal law that your child not be excluded from education due to special needs.
Also, maybe you can see a specialist who can help you set up a behavior plan at home so that you can try and deal with your son's behavior in a systematic manner. I know this is super hard! Sometimes following your instincts about how angy you feel isn't the worst thing to do--different kids need different amounts of imput to get the point. another special needs mom
I know how it feels to have a child who's like this. I often feel like walking away too (and might if I didn't have other children). You need help, especially if he's with you 24/7. Where I live (near Fremont), we were able to find peer counselors -- younger people who are getting their degrees and who are willing to spend time with our son for much less than the usual therapist rate. If this doesn't work, run him -- hire young adults to take him for bike rides, hikes in Tilden, bowling, etc. We've found the more tired our son is, the easier our evenings are. Have you checked out special schools -- Star Acadmey in Marin for example so you have some time away from him? This is a frustrating, exhausting situation and I really feel for you. Another Mom of Angry Child
The situation you describe must be incredibly stressful. With your son's symptoms there is no way that this is just ''bad'' parenting! You need a break and you need support. Here are a few thoughts. First, perhaps you should reconsider the home schooling. Your school district has a responsibility to provide schooling for your son that takes into account his special needs.
Insist on an evaluation, and if necessary, pay for a second opinion from an educational psychologist. Are you aware of any private schools or boarding programs that could help your son?
If this is the only way to give him adequate schooling, then the school district must pay for it. (For example, our school district has paid for students to go to the RASKOB institute in Oakland). It takes a lot of persistence, but it may be worth the effort. Second, see if you can find some books on raising an autistic child that you can share with your in-laws. Talk with them frankly about how difficult it is for you and your other children, and see if you can arrange some type of respite time with them. If they cannot provide help with your oldest son themselves (after all, he sounds very difficult), perhaps they or your family could chip in to provide for a helper who comes in occasionally for your son, or they could take the other two, to give them a break. (My son went through explosive rages for several years at about this age, and I would take his toddler brother, and his sister if she would go, over to the neighbors until he was back under control--embarrasing, maybe, but it wasn't like they didn't hear what was going on, and they were very supportive, not judgmental). I found having a diagnosis was very helpful with my family and friends, so educate them with books, documentaries, web sites--whatever you have at hand.
There is an organization headquartered in Berkeley--DREDF http://www.dredf.org/, that can provide a lot of info on the rights of parents of kids with disibilities (which is what your son has). I wish you strength, patience, and luck in dealing with this Anonymous
I hear you, and you have my support. Sorry I don't have any more specific advice than that, other than to say you sound like you're doing the best you can. Is it possible to get connected with a support group for parents of special needs and/or autistic kids, or find some resources for respite care? You need to take care of yourself, too Anon
Hello, Sorry to hear you are having such a rough time. I volunteered at the Son-Rise Institute in Sheffield, MA. They have an amazing family program for working with Autistic children. Check out their family programs. For info check out www.option.org Also, you might want to consider checking out the Landmark Forum-its a personal development and empowerment program that is really wonderful. www.landmarkeducation.com Best to you, David David
Growing up, I was the oldest and the only girl. My middle brother was VERY angry and while not autistic, I think in today's age he would have been tagged with some learning disability. My mom and dad did family therapy with him for a few years, from 8 to about 12. While it wasn't anything miraculous, it helped my very blue collar (and in my dad's case, no high school diploma) parents get a better grip on different ways to deal with him. Fast forward t m y youngest brother, whip smart and a different kind of angry, more internal and crafty, but stubborn. He and my mom started to lock horns when he was about 13 and because of my mother's anger and frustrations, by the time he was 14 they were having full-on physical fights - my brother kicked her in the chest once as she ran up to him laying on the couch, she punched him in the face hard while wearing rings with hard stones in them. I could go on.
School was complaining about him, other parents... so he entered therapy as well. Therapist asked that my mom and dad also go, but my mom got uncomfortable after a few sessions of seeing that she would need to shoulder some blame and she refused to keep going. At that point, the therapist suggested that under the circumstances, it would be best if as soon ans my brother started pushing my mom's buttons she would call my dad up and then walk away. If he was anywhere but work, he needed to drop everything and come home and deal with it. (I should add in here that my dad was very hands off when I was my brother's age - my mom was working FT and keeping house, going to PTA meetings, being a housewife and working and my dad was for way too long living the life of the 50s dad who worked, came home, cracked open a beer and watched TV until dinner was ready). So they tried that and to this day my mother said it saved her marriage, her sanity, AND her relationship with my youngest brother. For years, they barely dealt with each other beyond pushing buttons a little and then my dad stepping in. And then one day, it seemed like my brother snapped out of it and by then, after years of therapy, my dad finally stepped up in his own ways, and today, with her children 38, 35, and 32, you'd have never guessed how incredibly screwed up our house was (unless you looked really closely ;) )
In any case, I am not sure if ANY of this might help, but I wanted to give you hope. What helped my mom was being somewhat absolved of dealing with my brother. Maybe you need a long-term break of sorts anon
Dear Sad Mom, First let me say, my heart really goes out to you. You are dealing with a huge amount at once (3 small kids alone is challenging enough, and then to add to the mix a child with very demanding special needs) while you are just trying to get through the crazy making post-partum period.I have two sons, the older (7) has special needs (mostly social communication issues) but he is, thankfully, also an extremely loving and upbeat guy. Even so, I couldn't do it alone! And you should not try to! I think it is a big mistake to homeschool this child.
If he has OCD and autism, these are serious issues, and you and he need as much good, professional, caring help as you can get. He deserves to have the support of good special education teachers, counselors, aides and other professionals provided by the public school and (if you can at all swing it) as much private support (therapists, babysitters) as you can afford.
This is not only for your benefit (though I believe, from my own experience, that it would go a long way towards helping you feel a lot less alone and desperate) but for his as well. He truly needs the help of people who know how to deal with his problems, and who can steer him towards confidence and success. He might very well be a lot less angry and tempermental if he had this kind of support; He might also behave better towards you if he had more time away from you. I think that you also could benefit from having time and space away from him, AND from talking to a sympathetic counselor who could help you deal with your (justifiable) frustrations and angers, and who could help you devise a plan for creating a special village to help you raise your children, particularly your eldest. Believe me, I know it is not easy, but I implore you to get some really good professional help for your son and for you. Start with an IEP in your school district (call up the office and they will tell you how to get started). Please get a babysitter right away to give yourself some breathing room so that you can start moving towards getting the help you and he need! Please email with questions/for refs jerechter [at] yahoo.com
I feel for you. My son is also challenging, and impacts our lives a lot. Things that help me are humour (is your son able to laugh at himself?), getting breaks (it's worth paying for), and most of all taking care of myself. The ways I do that are exercise; getting regular bodywork that incorporates the mind as well; and a spiritual practice and community. For me that has involved meditation (James Baraz has a wonderful beginning class in Berkeley on the Spirit Rock website)and 12-step programs, which are very much about giving yourself space, letting go.
Regular time that I take care of myself has been essential, and it's so worth the effort and possible expense. Knowing my own limits, and replenishing myself. It is very hard to have a challenging child, and people with easy kids have no idea how hard it is. But there are things you can do. Antidepressants have also helped me a great deal. You may also want to consider therapy for your son with someone knowledgeable about these issues.I wish you the best anon
Sad mom, I know EXACTLY what you are experiencing: my 12-year-old daughter is obsessive-compulsive. She has been ''challenging'' literally since birth. The tantrums made me flash on ''The Exorcist''! She was uncontrollable when she'd get into a fit. NO ONE UNDERSTOOD what we were going through. My advice: if your son has OCD(verified by examination by a qualified psychiatrist) and you are not medication-aversive, run, don't walk, to a pediatric psychiatrist and try medication. My daughter was diagnosed at eight, but it wasn't until she was 10 or so that the rituals began to look like the textbook variety of OCD. Prior to that, I think the tantrums and anger (yes, she would yell and scream about how much she hated me) stemmed from her complete inability to control the things she *needed* to control.
Obviously, a child is in control of very little. We dropped out of any social life, never took her out to restaurants, didn't press for new playmates or playdates. I didn't realize just how far it had gone until her ''normal'' little brother was born, and he wasn't like her at all! I reached the breaking point last January with my daughter, after cognitive-behavioral therapy didn't work, and her rituals started to consume hours of MY time as well as hers. We got her on sertraline (brandname Zoloft) and inched up the dosage over the course of several months and ...
although it's not 100%, just imagine losing maybe 70 to 80% of the rages, the tantrums, the anger and frustration! Rather than feeling sad that she's on medication, I just think about the chemical imbalance that causes the erratic behavior and feel grateful that there's a way to give her some relief. I would love to tell you how she feels and how this affects her, but she doesn't talk about her feelings. She is grateful for the medication, and I actually LIKE being with her now that she isn't tormented by needs that she can't fulfill. I know what it feels like to just want to walk away and not look back. I can't share my name with you because I am not willing for other parents on the listserve to know my child's ''secret'' - it's hers to tell or not, and I must respect that. My heart is with you and your family. This is a painful disorder for all of you. Sad mom, too
Dear Sad Mom, I really hear you. What you're dealing with is a lot, and I just want you to know that you're doing a great job in a VERY challenging situation. Blessings to you and your family. I don't personally have experience with a special needs child with your son's challenges, but I have homeschooled and I know how much it takes even with a normally, spirited, energetic, willful and sometimes, ''full of attitude'' child! Even with a helpful partner, it sounds like you still need more support, regularly scheduled time to yourself for rest, and recouperation of your own spirit, AND some healing. I can only point you in a direction I have personally taken and you can choose whether it works for you or not. So here goes... I personally have done lots of ''spiritual healing'' work and have been a student of many modalities over the years. I now practice two forms of energy work, a couple which may be of interest for you personally, and one which may be of particular relevance for your son's' condition.
I would gently suggest you talk with David Demeray of BioGenesis. His family has a wonderful set of ''tools'' which are working very effectively for many people. The great thing is, anyone can use the tools, they're very simple and easy to use. If you speak with David or his mother Linda, I would suggest you ask them about the boy who recovered from very disabling OCD. It may give you hope and a resource, not only for healing for your son, but for your entire family. There is much assistance and guidance for all of us if we open up to it. Thank you for the courage to expose your struggle and ask for help - that is always the first step. I will post another response with David's contact info, (the website is www.BioGenesis.us), however, I don't have it with me right now. In the meantime, please feel free to call me or email me and I can get the info to you that way. Take care of yourself and thank you for your courage in sharing your struggle - you are a very patient and caring mom whose family is fortunate to have you loving them the way you do. Bless you Laura
Even with the social skill level of your child, he can learn to respect you, be responsible and fun to be with. You may wish to call Virginia Keeler-Wolf to discuss your son (510-339-9363). The other support that may help you is reading Nancy Thomas' book, WHEN LOVE IS NOT ENOUGH. She discusses in detail how to work with children who have behavioral issues. Her first instruction is: Take care of yourself! And she gives you ideas about accomplishing that. Certainly your hormones after birth may contribute to overwhelm now, more than at other times. I would encourage you to take cod liver oil or fish oil to assuage any postpartum depression. Further, breast fed babies of moms who take DHA/EPA (fish oils) have significantly higher IQs.
We began working with Virginia with our son, who also has similar issues, and the change over the past few months has been remarkable. I hope this will also work for you and your son. Been there too
I read your post and had to respond right away. I feel for you and your situation! Although I don't know what it's like from a parenting perspective, I worked with kids with autism and know how incredibly challenging-nonstop!-they can be. Despite what some claim, I do not believe that autism ever ''goes away,'' and to me it's the most challenging disability you could be faced with as a parent. Clearly you need help and support ASAP. You mentioned how much your family is able to help-or not, but I'm wondering what other sources of support you've investigated.
Were you ever involved with the Regional Center or the state program for older kids with disabilities? I'd think they could connect you with other parents facing the same issues that you could at least commiserate and share information and support with; autism has become so prevalent in CA recently that you have lots of company. It sounds like the homeschooling-having your son home 24/7-is a source of great stress. Trying to provide for all of his needs-while also taking care of your other kids-is just too much. Do you ''have'' to homeschool him? He sounds like a prime candidate for services either in a public, private or ''special'' school, paid for by your local school district. I'm also (slightly) aware of an organization called BIA that does home behavior therapy/education with kids with autism. There's also an advocacy organization-and I hope someone will write in with the name-that helps parents advocate with school systems so that the child's rights under ADA are observed and needed services are made available. You'd also be eligible for some respite care, I would imagine-someone trained who could watch your son periodically. I could see how you wouldn't have time and space to investigate these things, but please do what you can, or ask a friend to help-so that you get the kind of support and resources that will make a difference for you and your family for the long-term. Feel free to email me if I can help you track down some resources. jkh
I work with children who have autism and the behavior you describe is not uncommon. I don't think there is much you can do on your own to fix this. Do you belong to any parent support groups for families with autism? They could be a lot of help and a great resource for networking. An expensive, but pretty effective option would be to find a private behavioral consultant who could design and implement a behavior program for your family. I'm not talking about the general behavior analysis that school/regional center does but a private Nanny 911 style of program. Families who have had this done have had good success.
Unfortunately, your son will only get stronger and bigger and you need to think about keeping him safe, which is why an expensive consultation may be worth it in the long run. Good luck anon
Hi, I work with many autistic children. The frustrations you are communicating are valid. When you live with a child with special needs every day, then you understand. I had great luck with the sensory learning program to help with the rage of my own son, among many other things. If you would like some more information please just e-mail me. How your son handles his sensory input really can help shape his behavior. I wish you all the best, Take care, Bryan
Dear Mom, I am also the mother of a special needs son, and I spent several years trying different private schools and homeschooling before I gave up, moved to a good school district and put my son in public school where he received a ton of services. The extra support took the strain off our relationship and he has improved immeasurably. Even if you don't take this route, you are eligible for services through Regional Center (like respite care, which it sounds like you could certainly use). Having an autistic child is too stressful to manage alone and autism is responsive to intervention. You say you come from a family that is dysfunctional, and your isolation-- trying to go it alone--can be a symptom and a perpetuation of that dysfunction. Please get the help you all need. Glad I Surrendered
Hi, I have a toddler in a home based day care. The day care consists of mainly infants with a couple of toddlers and one elderly adult assistant (along with the main provider). There are 7 full timers and one part timer (two of her schoolage kids come home halfway through the day). Last week she had a 9 year old autistic child ''drop in'' for two days. This week he has joined the day care. There has been no open discussion. The child does not speak and loves to go outside (will bolt for a door if he sees the opportunity, pushing out of the way).
I am a compassionate person and all for inclusion, but am concerned about the age difference and mimicking behavior inappropriately. I am also concerned that my provider and the assistant are not adequately trained to manage this situation (especially in the event of an ''episode''). I questioned her and was told that the child ''doesn't hurt anyone.'' That was not what I asked her when I got that answer!
I have a very dear friend that has a masters in special needs and her opinion (based on her specialized training) is that it is completely inappropriate for a 9 yr old with special needs to be around toddlers. Aside from the toddlers mimicking him, the 9 year old will mimick the toddlers. It's one thing when a two year old mimicks another two year old hitting, scratching, pulling, but when a 9 year old mimicks a two year old hitting, scratching, pulling, someone can get very hurt.
I am trying to discuss this with my provider but feel like my attempts to openly communicate are not being honored......
one mother has already abruptly removed her child! I am already looking for alternates....
any advice, would be highly appreciated...... anon
I am the mother of a seven year-old autistic boy and a teacher. There isn't a simple answer to your question about whether it is appropriate for an autistic child to be included in a home day care with toddlers. It would depend upon the child's behavior, the attitude and number of the adults providing the care, and the attitude of the other parents and children at the center. Licencing laws for the home day care require that the provider make resonable accomodations for a disabled child. Assuming that the autistic child is comming to her after school, and the the provider has school aged children of her own, he is with his peers in the day care enviornment. If the autistic boy isn't in school, that's a whole different matter out of the scope of this newsletter.
With due respect to your friend who is an expert on special needs children, no two autistic children are alike, just as two typically developing children are alike, so her judgement that an autistic child should never be included with young children is too simplistic. Many professionals in child development and education have little if no training about developmental disablities. Teachers training is about typically developing children, unless the teacher is aquiring a supplemental special education credential. I have had to explain my child's discrete-trial training at school a pediatrician.
Autism is a spectrum disorder. If a child has enough characterstics that indicate the disorder a diagnosis can be made, but all autistic children do not behave identically, since they won't share identical characteristics. For example, autistic child may be very ritualistic, while another may only be slightly so. The stereotypical autistic kid who bangs his head or flaps his arms all day is just that - a stereotype - they're all different.
Aggressive behavior would be a reason that the child might not be a good fit for this daycare. Many people believe autistic children are always aggressive. My son is extremely passive and has never shown aggression toward anyone. As a toddler he just seemed like a passive, shy boy. As far as the possibility of the autistic child immitating two and three year-olds aggression in day care, I wouldn't worry, most austic children don't immitate other children. Their aggression is a symptom of their frustrated attempts at communication.
Bolting is another reason the daycare enviornment may not be appropriate if the provider cannot provide for the safety of the autistic child and her other children. When you ask her about this behavior, ask specific questions, ''What action will you take if ''Billy'' escapes? How will you supervise the other children if you need to go retrieve him?'', ''How often does he escape?'' ''Does he stop when told to?'' She probably answered your question with ''he doesn't hurt anyone'' because that is what she thinks you're concerned about aggression. The provider also probably felt defensive both of herself and of the autistic child, since a parent abruptly pulled their child from her care. It's an answer people often give when people are concerned about wierd, but otherwise harmless common behaviors of autistic people, like hand flapping, ordering toys, making odd noises, ect. A lot of people, even if they don't admit it, just don't want to be around people who behave differently, even when the behavior isn't harmful.
If you're concerned about the provider's training, again ask her specific questions, such as ''How do you communicate with Billy?''. ''Does Billy respond to your commands?''. ''How does he communicate his needs to you?'' While teaching an autistic child requires a lot of apecialized training, providing care for a few hours after school would not. Many non-verbal children are taught to communicate using picture cards, so if he brings her a card with a picture of a toilet on it, she would know, with or without a lot of training, that meant he needed to use the toilet.
I hope you can open up better communication with your daycare provider. I think being specific in your questions will help. With the increase in the numbers of children being diagnosed with autism, we will need more people who are open to caring for them, and we will all need to be tolerant of their differences. anon
I'm the parent of an autistic child. If you trusted your daycare provider to care for your child before the austistic child arrived, then you can continue to do so. Your typical child will mimic the majority of typical children and will easily learn to distinguish appropriate from inappropriate behaviors - just as any typical child amongst other typical children will do under appropriate supervision. The typical children in my childs school are happy, well adjusted kids. There's a 3:1 ratio of typical to autistic kids in this school. The kids start at the age of 18 months and go up to the size and chronological age of 6 or seven. From what I've seen, these typical kids are also learning to be more accepting, helpful, and less judgemental than many young kids can be. As for whether it's approriate for the 9 yr old to be there with toddlers...that's a matter for his/her parents and the daycare staff to determine. Yes, it would probably be better for the autistic child to be around somewhat older typical children. However, this might currently be the safest, most loving, practical situation that the parents have found so far. Is the level of ''teaching'' and activities appropriate for this child? If you want to get involved in this child's life to ensure that he/she is getting what's appropriate, as you might a blind child or one with cerebral palsy, - that's great. However, unless this child has a serious aggression problem apart from his/her autism, then the child's presence should be a non issue for you. anon
I'm the mother of an autistic son who is now 14 years old. He has a twin sister who is normal. We've been through all of what you mention, and then some. Please do not be terrified. Diagnoses will change and often experts disagree. The autistic spectrum of disorders is enormous and the words wind up meaning very little. The best advice I ever got was from our son's first speech therapist who said to me, Don't worry about the labels. Just do what works. VERY good for directing the heart and the energies. Whatever the problem is, or wherever she fits on the spectrum, autism is not a death sentence. The progress can be astonishing, but it sometimes happens so slowly (until we look back at it with perspective) that it evades us. (Watch any child's development in real time.)
Do not put all your faith in any particular diagnostician's opinion. Put your faith in your daughter and yourself and your husband. But DO proceed quickly. Early interventions are the best, and the sooner you are aware of the possibilities and her individual needs, the better for her and for you.
I, too, had all those fears and questions, all those unknowns, all that terror and waiting for appointments that you are experiencing. But now, I've got some hindsight. I longed for someone to talk to, some other similar children to observe, any one who could tell me what was happening to us all. Please do feel free to contact me. I would be happy to talk to you, for however long, and give you whatever benefit there is of our own references, stories, experiences, etc.