Diagnosis for Autism Spectrum

Parent Q&A

Adult ASD diagnosis—neuropsych recs? Mar 26, 2021 (2 responses below)
Evaluation for High Funct. Autism in Girls Feb 5, 2021 (6 responses below)
Help with finding a Kaiser child psychologist w ASD knowledge Jan 14, 2020 (3 responses below)
Kids Overcoming Oct 18, 2018 (0 responses below)
IEE/ FBA for 9yo son with Autism Dec 7, 2017 (4 responses below)
  • Adult ASD diagnosis—neuropsych recs?

    (2 replies)

    Can anyone recommend a neuropsychologist who can test adults for ASD? Our daughter is having a comprehensive screening in the fall and my partner wants to be assessed (comprehensively) also, but the adult doc our daughter’s doc recommended to us, David O’Grady, notably omits ASD from the list on his site of adult concerns he screens for (and ASD is one of the things both of us are wondering might be at play for both our daughter and for him). I’m not sure if this is because it’s hard to screen adults for ASD? It seems a lot of people get diagnosed as adults so I don’t really understand why he seems to test for everything but this. At any rate, can anyone recommend someone who does comprehensive adult neuropsych evaluations that also include screening for ASD? Thanks :)

    i don’t have a rec, but wondering why the partner wants one? there aren’t a whole lot of options for adults seeking any treatment, and most of those in turn don't gatekeep based on a formal diagnosis. (insurance may be another matter.)

    there are no criteria for diagnosing someone as an adult, which is why it’s hard to find providers. i was diagnosed as a child, and many adults are self or informally diagnosed. you could instead consider an eval just to rule out other concerns, and then run with it. 

    I highly recommend Thomas Zurfluh in San Francisco. He can do most of the assessments and the interview through zoom, though there will probably need to be one in-person session (following stringent Covid safety protocols). My family had a wonderful experience with him. He is definitely able to do a comprehensive screening, including for ASD.


  • Evaluation for High Funct. Autism in Girls

    (6 replies)

    I'm looking for someone that can evaluate my 10-year-old daughter for Autism, ADHD, and processing problems. We have medi-cal, although we expect to pay out of pocket. She is 10 years old, highly intelligent (gifted), and socially motivated...exactly the kind of kid that can compensate so that these disabilities can fall under the radar. A few years back, she was diagnosed by a psychologist with Generalized Anxiety Disorder and Sensory Processing Disorder.  She also has a complicated genetic and in-utero history (she came to my family as a newborn). Despite treatment of a psychiatrist, OT, and psychotherapy, her symptoms continue to become more apparent and asynchronous with age. 

    I've long felt that she also has ADHD and now we are starting to suspect that she is on the spectrum, particularly after learning about the Pathological Demand Avoidance profile. It was the first time we ever saw all of her symptoms together in one place. I've heard great things about the STAR center at UCSF for diagnosing girls on the spectrum, unfortunately, they do not take Medi-cal or out-of-pocket payments.

    I'd love advice from folks whose kids fit (or come close to) this profile. I've received recs for Dr. Zoe Collins and Dr. Lisa Greenberg...do you have feedback about whether either of them might be a good fit for us? Do you know of someone that specializes in this area of hard-to-diagnose girls? 

    Thank you!

    Very similar sounding to my 10-year-girl. I had never heard of PDA before - interesting and food for thought for my family. In the meantime, we have Kaiser and put her through their ADHD assessment.... which IMHO was very much geared to hyperactive boys, and she didn't meet their threshold but manifested enough anxiety through that assessment that she got the anxiety diagnosis. My partner and I are very much convinced she has ADHD but will never fit the clinical box due to gender bias. ANYWAY, I very much sympathize. Our solution for her was to change up her school situation, believing (for better or worse) that a normal large classroom setting would never get her adequate support for her needs. If we need to pursue a 504 or IEP later, we will, but for the moment we are scaffolding a lot at home. Good luck.

    I can’t speak personally to how she’d handle a girl’s complicated diagnoses, but Dr. Renee Wachtel in San Leandro diagnosed my son with ASD around 5 years ago. The first clinician we took him to—and paid a small fortune out of pocket—was only willing to diagnose him with social communication disorder, a diagnosis which did not provide coverage for  many services he desperately needed.

    Dr. Wachtel’s office wasn’t fancy, but the care was excellent. She listened well and was very observant. And at least then, she was a medi-cal provider. Her diagnostic report was top-notch, and multiple therapists over the years have mentioned how accurate they thought it was. Good luck to you.

    I haven't heard of PDA, but I highly recommend Sumana Kaipa in Berkeley, who diagnosed our 8-year-old daughter this past summer with HFA and ADHD. Dr. Kaipa was able to get us in almost immediately, saw my daughter in person despite the pandemic, observed her through eight hours of testing over three days, worked with us as parents through an intensive interview and a follow-up discussion after diagnosis, and produced a wonderful fifteen-or-so page report that helped us understand her HFA/ADHD, identified her giftedness (twice-exceptional, as they call it), and was heavily relied on by our district in the early fall in getting our IEP in place given that they were unwilling/unable to do traditional testing themselves. The one-on-one work with her new speech and special ed teachers at school has been a game-changer for behavior, even remotely. Dr. Kaipa does not take insurance but we found that what we paid has paid tremendous dividends through the IEP process.

  • Hello, I'm looking to get an assessment through Kaiser for our 6 yr old son who we suspect may be on the spectrum. He does not go to a public school, so we don't have an IEP, but the school counselor where he goes strongly suggested he be evaluated. We're Kaiser members, and I've not heard great things about getting an assessment through Kaiser, so I'm checking here to see if any other parents have had success in getting your child assessed/finding a child psychologist who knows about ASD? With Kaiser, you have to have your child's pediatrician refer you to psychiatry first, who, I guess must find enough reasonable cause to then refer you on to a neuropsychologist for a true ASD assessment. We have gotten the initial referral to psychiatry, but I'd really rather not go in blind if there is a good doctor to request a visit with. We live in Richmond, but I am happy to travel to Oakland or wherever to see a good, knowledgeable psychiatrist/psychologist. If our son is on the spectrum, we suspect he is pretty high-functioning, which makes finding a truly knowledgeable practitioner so important, as he is very bright and presents well, but definitely has some developmental delays around toileting, as well as sensory and behavioral issues. Many thanks in advance for any advice you may have.

    We went through this nearly 5 years ago, but at that time, neuropsych. evaluations for ASD were only done in San Francisco, with a small team of psychologists and a speech therapist.  Not a big deal to request this with your East Bay-based pediatrician.  At the time, the wait was about 6 months.  We were first referred to child psychiatry who did a phone assessment and then we were put in the queue for the in-person assessment (about 3 hours long) in SF.

    Good luck!

    P.S. If you want to get a far-better understanding of your child with a more thorough assessment, I recommend you also see a private neuropsychologist such as Ori Elis, Lisa Greenberg or Carina Grandison.  It will cost big bucks but be soooo worth it!

    We liked Jose Lopez and Alexander Klein at Kaiser Oakland. We ended up going to the ASD Center in SF for the eval, which was thorough.

      I've seen excellent, thorough evaluation reports from practitioners at Kaiser Autism Clinic in San Francisco.  Also, for future reference,  students who do not attend public school, are still entitled to many services provided under special education law, such as a free evaluation through your local school to address concerns. There are many caring, informed, talented school psychologists who do excellent, thorough evaluations in the schools.

  • Kids Overcoming

    (0 replies)

    Hello, our 4 year old daughter is scheduled at Kids Overcoming in Oakland for an evaluation for Autism.  We were referred there by Kaiser Oakland. We haven’t been able to find any reviews for Kids Overcoming. We were wondering if anyone in this community has used them and what they thought of the evaluation process and services. Any recommendations/support groups/books for a family starting this journey of a child with possible autism would be greatly appreciated. 

  • IEE/ FBA for 9yo son with Autism

    (4 replies)

    Help! Our 9-year old son, who is diagnosed with Autism as well as sensory processing disorder and anxiety, is having tons of behavior problems in his 4th grade class.  We feel like we need more than the school's assessment, particularly in regards to what he needs and how to best help the situation. We are getting daily emails and phone calls about incidents. We are in the process of asking for an independent educational evaluation (IEE) and would ideally like to find a psychologist that can do the outside evaluation as well as a functional behavior assessment (FBA), and who has expertise specifically around evidence based interventions for Autism. Any recommendations greatly appreciated!

    Please check in with DREDF on how to request the IEE. Most health insurance will cover functional behavioral assessments and services for those with a clinical dx of autism. You may also want to explore eligibility for regional center services.

    Dr Terry Doyle in Rockridge is GREAT. Remember, the school has to reply to your request for IEE within a 'reasonable amount  of time.' If they don't, you can file a complaint with the California Department of Education (which is what we did and it was super helpful).  DREDF can help a ton there too. BUSD has a terrible record in 'help' for kids with learning disabilities. You have to advocate hard for your kid. 

    Hannah Acevedo has been a lifesaver, and has very much helped our school situation with our son (who sounds similar)! She is an educational psychologist with neuropsych training, also is a behavior analyst and I think she does IEEs as well as FBAs. Hannah really "got" our son and was totally up on the latest evidence-based interventions for Autism, and she worked to make things doable for us and the school (which the last neuropsych we saw did not). She also took the time to collaborate with our son's OT in creating the behavior plan to take into account our son's sensory issues and how they related to his anxiety. She is down to Earth, has tons of experience working with schools and families, and does excellent evaluations. Her latest contact info is: https://www.pathwaystolearning.services/  or hannah [at] pathwaystolearning.services, 510-730-1537

Archived Q&A and Reviews


Late blooming 18mo vs. Autism, can specialists tell?

Jan 2013

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

Autism diagnosis before 18 months?

July 2012

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.

Daycare thinks my 2-year-old may be autistic

Jan 2010

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

School wants us to have 5-y-o assessed for autism

Nov 2008

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

Wait for Regional Center evaluation for 29-month-old?

Aug 2008

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

Diagnosis for 3-year-old who shows signs of PDD-NOS

Feb 2008

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

Where to Get an Assessment for Autism for 4yo

Jan 2001

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

July 2001

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.