Advice about Asperger's Syndrome
Questions about Teens & Pre-Teens
''Sally'' was diagnosed with aspergerss the summer after 5th grade. Because she doesn't have the more extreme asperger-ish traits, but instead only has a handful of traits that make others see her as a loner/quirky/superbright, we have hesititated to tell her of this dx for fear she'd self label. Now she is battling with cutting herself and seeing a psychologist. So far, she has stopped the cutting, but instead she sometimes will hit herself. ''Sally'' does have a small group of close friends. I don't believe any of her friends have aspergers, although they go to a private high school that celebrates differences and even then they are all on the social fringe.
Do I tell ''Sally'' now of her dx, and would that be helpful or make her feel even more estranged. Depression is one of her traits, but she refuses any medication since she is very creative and sees how it dulls other kids she knows or makes them feel somehow different from themselves. ''Sally'' is very bright, a top student, and wants to study creative writing in college.
I'm more interested in her finding her social tribe in college, as I am sure she'll do fine academically where ever she goes. Any advice? Feeling Lost
I really understand how you got in this situation. My foster son came to us with a morbid fear of not being okay--he was having PTSD symptoms and felt strange all the time, and desperately didn't want to hear that he was different from anyone else. Consequently, we were very, very careful about how we handled neurological and psychological testing, and only gave him as much information as we absolutely had to. At the time, I felt that some people considered that to be keeping secrets and that it wasn't okay, but I knew my kid and his needs and he could not handle much.
So I don't think your motives were bad at all in not telling Sally about her diagnosis. And diagnoses are sometimes wrong, so it might have been that the diagnosis was eventually not that relevant.
It sounds like maybe her diagnosis has become relevant, however. I think what you wrote is very close to what you should say. ''Honey, we had you tested because of some things we noticed, and they said you had Aspergers, and we didn't think it was useful for you to know at the time. We never wanted you to be limited by a label. But now that you're struggling, we think that hearing this information might be useful and might help you understand yourself and your behaviors. This is a good thing for you to discuss with your psychologist.''
Try not to behave like you made some huge mistake, or were keeping some deep dark secret. Be matter of fact. This is the truth. It is only one facet of her, something she might find very important or not that relevant. But before and after hearing of her diagnosis, she'll still be the same person, she'll just have more information. sounds like it's time
I don't know about Asperger's, but I will share that for our daughter ''Marie'', we'd suspected she had ADD, but we feared labeling her, over-diagnosing, etc....so we just decided she was quirky and special. Until she began showing signs, as your daughter has, of feeling bad about herself: cutting, social isolation, depression, eating disorder, etc. We saw therapists who mostly focused on the eating disorder, but because she's bright they never saw the ADD part.
She went off to college, and did ''find her tribe'' but still struggled. Finally we found a really good psychiatrist who was able to take a much more comprehensive look at her, who said that Marie's problems seemed mostly to stem from undiagnosed and untreated ADD. Marie had already suspected the ADD issue, and for her it was a huge relief to have the diagnosis, she no longer beat herself up so much, and understood her constant mistakes and risk-taking in the context of the ADD. Once the ADD was acknowledged and somewhat dealt with, the anxiety and depression were greatly reduced.
So my guess is that your very bright daughter might feel relief to know about her Asperger's diagnosis. She's in high school, plenty old enough to understand this. And as to the labeling, it can actually be freeing. She can learn ways to understand her behaviors and not feel the blame/shame so much.
I hope she won't be mad at you for ''hiding'' the diagnosis, and will understand you really meant well. You're loving parents, you wanted to protect her from feeling ''less than'' or ''different than'', but the thing is, kids often know, or suspect, more than we think they know, and their having only partial knowledge can be distressing. The longer you withhold the information, the more she's likely to feel it was something terrible you were hiding from her, and it needn't be that way.
As to how to do it, probably it's best for Sally to meet with an Asperger's specialist who communicates well with her both about the diagnosis and about the implications for understanding herself and the world around her. It might be time to start anew, with a fresh evaluation rather than depending on the 5th grade evaluation, so maybe that way you don't have to deal with the ''old news/withholding information'' problem. I don't have a suggestion as to who to see, but hopefully someone else does. My guess is that ''Sally'' is ready to be given the tools to understand herself. ''Asperger's'' doesn't have to be a restricting label, it could instead come with a whole lot of potential... ''oh, this is how I am, and others are like this, and here's how others have coped and flourished.''
Best wishes to you, keep moving forward.... ++++
I have a 13 y/o boy with AS. Like your daughter, he is super bright and does well academically. Socially, he does fine in his small school, though we've had bullying problems in the past. He is relatively immature and not self-conscious (and a boy) so we are still in a ''grace period'' socially. We, too, agonized over telling him. We waited 2 years. Everything I read, particularly by people with AS, urged us to tell him.
Our boy is prone to bouts of anxiety and down moods that will likely get worse as he faces social challenges & puberty with more self-awareness. We were worried that he would use the label to feel ''hopeless'' or as a crutch, since learning social coping and workarounds takes real work.
But honestly, when we told him (at 12) it was rather anti-climactic after all that worrying. We scripted it out: how his AS helps explain the ways he is different, how his analytical mind makes him brilliant but also rigid, why he struggles to understand people, why he has sensory overload, wants to withdraw, finds comfort in repetitive activities. We talked about famous people (Jefferson, Einstein, Gates), who are believed to have AS. We gave him books to read. We tried not to sound like it was a big deal, that it would make him understand himself better.
The response? In his typical AS style, it didn't concern him much. I am still waiting for him to care more about it, which I fully expect he will, in his own time. It's almost like we forgot he had AS when we predicted his response. At this point, he does not feel bad about it, does not label himself or use it as an excuse (I suppose that could change). He is matter-of-fact and doesn't communicate about it. Now I can point out to him when something is difficult for him to understand, or when he is being particularly rigid or repetitive or brilliant, that this is typical of AS, how he can learn a work-around, how it affects others. This has been very liberating.
I recommend reading chapter 3 of Freaks, Geeks & AS by Luke Jackson (''To Tell or Not to Tell''!). This book has insights into how to explain AS to your daughter in a positive way (eg; page 21-22, we used the ''graphic equalizer'' analogy). Also, ''Look Me In the Eye'' by John Elder Robison, who has AS, gives insight into why it is important to know, and how much better he feels he would have coped had he only known. You know best how your daughter is likely to react. However, in my opinion, the sooner she knows, the sooner she can start to sort things out herself. It will explain so much for her. If she could tell you, almost certainly she would say she wants to know. Have you looked into Orion Academy, a HS for AS kids? It is potentially an option for easing the way and finding our children's ''tribe.'' Good luck. Mom of AS Boy
Our son 16 yo. wants to learn how to drive this Summer. I'm looking for an excellent school that have extensive experience teaching special needs kids- ie- Aspergers, ADD. Thanks New to this
I hate to say this, but as an HFA/ Aspie, I flunked driver ed and didn't make it to the driving test itself until age 35. Frankly, someone w severe sensory sensitivity and overreaction to stimuli may be too sensitive to drive at this age. Please consider whether your kid should be driving at all. I'm enjoying having far less sensitivity to stimuli after bearing two children, and am a longtime extremely safe driver now. Life is hard for Aspies.
hi i am looking for help for my daughter who has aspergers syndrome she is very shy she do not have friends in school i need help trying look for something for her needs i have interest for the childrens learning center in alameda,ca is it a great school for special needs teens.
Check Communication Works in Oakland www.cwtherapy.com, located at 4400 Keller Avenue, Suite 200 in Oakland, California 94605 and can be reached by telephone at (510) 639.2929 and email info@cwtherapy. BL
I wonder if you have considered a social group for your daughter. Our son--who also has Asperger's--worked with Dr. Maria Antoniadis in a facilitated group, which worked wonders. Beyond learning how to meet people and how to strike up a conversation, he became much more socially confident. Eye contact is easier. He seems not to perseverate as much. We found this weekly group to be worth the time and reasonable expense. --Been There
Our son will be starting high school this fall, at a small private school in SF. He's very bright but struggles with fitting-in and feeling different(he sees a therapist & attends a social thinking group once a week). The local public middle school has been tough for him socially as kids think he's just ''weird'' and ignore him, but he has a few close friends that are very accepting and ''get'' him and are aware of his diagnosis. More than anything, I want my son to feel successful in high school, but would disclosing his dx to peers make him more of a target or are kids more likely to be more accepting and understanding about his challenges? I can't help worrying. Worried mom
At his age he should have a say in it. Get him the book ''Look Me In The Eye'' (by John Robison, I think) and talk to him about what he thinks would work. This is a memoir by a guy who struggled his entire life and who found some redemption in a diagnosis that happened somewhat accidentally when he was well into his adult life. It's also an interesting read on its own. But let him decide what would work best for him. ANd maybe talk to the school administrators and see if they have any experience with this issue. At my daughter's school, there are a few kids who clearly don't ''get it'' and I try to raise my daughter's tolerance by raising her awareness that some kids just think differently. My instinct would be to let his handicap be known, because people tend to be more tolerant to the degree that they understand that people can't change things. REmember that all these kids have to deal with your kid too. so a diagnosis may also give them tools for how to deal with the inevitable conflicts. Also getting it out there might help to destigmatize the condition. Plus it might help him find his true calling--there are plenty of people on the aspergers or autism spectrum who are quite successful in life. Probably many of them are scientists, engineers, etc. BUt I can guess that none of them are therapists or child-care workers. That's not their strength. THe author of that book was very successful as a sound engineer and now runs a high-end autobody shop. ANd he's married, has a kid, and even managed to survive a rather unconventional childhood (he is Augusten Burrough's half-brother---the guy who wrote ''running with scissors'')
There was boy with this problem in my child's small pvt school during Jr Hi years. Parents were afraid of ''stigma'' so kept it secret for first year. Problem was that kids knew something wasn't normal, and thought he was anti-social and he became isolated. Then (possibly on advice of therapist) he told his classmates his problem, described some symptoms and asked their understanding. This helped quite a bit, and he ended up with a couple of students as friends and more tolerance from all. My suggestion is to get a sense of what your son's classmates are like by watching them interact on school yard and getting to know a couple of parents you can trust. (Some school authorities just want to give you a rosy picture--parents are more candid.) Small class groups in small schools can be close knit or there can be ins and outs and snarky types who intimidate the rest. Get therapist involved and move cautiously, get your kid involved too, if possible. If/when you all agree advantages outweigh risks, get school authority's help in telling classmates in a low-key way that calls on classmates' maturity and reminds they are all ''different'' in certain ways. History teacher in our school (the Academy) looked out for this boy, reminded certain other kids when he saw the need, and linked to parents. Really helped. Flyer
I missed the original post, but I hope this is relevant. I am a high school teacher that recently got a new student who clearly has symptoms of Aspergers. She was rude, disruptive, and inappropriate, and the other students deemed her ''weird,'' laughed at her, avoided her as much as possible and eventually began telling her to shut up. Her outbursts caused huge disruptions in our class.
After about two weeks I talked to the rest of the class when the new student was not there. I explained what Aspergers is, what the behaviors are, and gave them some strategies for interacting more positively with her. They were SO RELIEVED! They actually interact with her more often now that they know how to redirect her and are not afraid to be explicit about her behavior and/or their expectations.
She still manages to be wildly inappropriate and cause giggles in the classroom, but the other student are no longer frustrated or annoyed and the disruptions have been totally minimized. Her classmates actually thanked me for letting them know and have been great about attempting to integrate her into our classroom community. --In favor of disclosure
My 10 yr old son has very mild Aspergers syndrome, which is mostly positive in that he is very bright, inquisitive, polite, and reads voraciously, loves facts, games,and older kids and adults enjoy him. But, he has a hard time with making and keeping friends his own age who don't ''get'' him and he doesn't always understand their social cues or when they are being sarcastic. Where can we find other kids for friendship who have a similar situation?
Second question: he has not been told yet about his diagnosis as I don't know what effect it would have on his self esteem. He already thinks that something is ''off'' because he gets teased in school and told me he feels like a different species from the other kids. It breaks my heart to hear that but telling him is very delicate and I'm afraid he would stop trying to make friends if he knew. Eager to hear from others with experience. Berkeley Mom
Hi, I also have a 10 year old boy with mild Aspergers/HFA (whatever they call it these days!) and he sounds pretty similar to yours, except perhaps that he is more into science than reading, and he may be more unaware of his differences, at least so far.
But this issue is a big one with me: When and how to discuss his ''disability.'' He has brought it up obliquely to me at different times. Most recently (last week), he presented it more directly than ever: Out of the blue, he asked me if he had ''autism, since people with autism have social skills issues.'' (He knows he has social skills issues because he has gone to groups in and outside of school.) I'm not sure where he got this connection between this ''brain disorder'' as he put it and his own issues, but I'm sure it's around his school, on the radio, etc. I really didn't know what to say, and the moment passed.
I'd love to talk with you moreif you'd like, and possibly have the boys meet sometime, and see if that works. J
I have a 13yr old Aspie son, and I'd recommend starting a parent support group at your school where you can meet parents of kids with similar issues. You may try putting an ad in the school's newsletter advertising your group. That may lead to play dates for your son and information sharing that would be helpful for all of you.
You may also consider a social skills group where he can meet other like-minded peers. There's a pretty comprehensive list at http://www.aspergersresource.org. Hope this helps!
I would encourage you to check out Communication Works in Oakland, www.cwtherapy.com. My six year old son has been going there for several years for a ''social thinking'' group. It's a small group (3-4 kids) of same-age peers who are working on the types of issues you described, and they have groups from preschoolers to teens. Every week he learns a social concept and practices it with his group, and we get some instruction at the end of each session on how to work on that concept at home. We've found it to be very helpful; my son really likes going and is becoming more comfortable with social situations, and we have learned a lot of techniques for helping him. And the therapists are absolutely wonderful; they really get my son and have different strategies to meet the needs of each kid in the group.
As for whether and what to tell him, that's a tough one. I've heard from people who feel very strongly that a child should be told of a dx as early as possible, and others who feel that there is no need to tell anyone, including the child. My son has a ''provisional'' diagnosis that isn't very specific anyway, so there's not much in the way of a label to give him even if we wanted to. I do feel the need to explain to him why he goes to group (and other therapies), because even though he hasn't asked, I suspect he might be wondering. My husband and I talk with him about how everyone has things that they're really good at, and things that challenge them, and while he's really great at math and reading, recess and playing with friends are sometimes challenges for him. So, we explain, he gets some help with those things just like some other kids get help with math. If your son feels that he's ''different'' and doesn't know why, it might help to talk about it. The way you described it in your post is very positive and sounds like a great starting point for the conversation. Good luck -- these things are so hard and no one prepares you for it! Oakland mom of a lovable quirky kid
Has your son had any social skills training/classes? My son is just 4, and is on the autistic spectrum, and I am just starting to look into social skills groups, so I can't comment on any particular one, but I have heard great things about Communication Works (http://www.cwtherapy.com/) in Oakland, as well as Quest's summer camp (http://www.questcamps.com/). It seems like those types of things would help your son find peers that are similar, as well as help him develop some of those social skills that you commented on in your post. J
I am currently looking at this problem from a few years ahead and a few years behind...My niece has Aspergers, and my own son is will be evaluated soon. My niece is almost 20, and has no idea. None. Life is hard for her. She doesn't feel normal, but no one has ever addressed the issue, and her symptoms suffer for the lack of discussion about them. I think she would feel so much relief if she understood herself, and other people. I'm not sure what the right age is to do this, but looking at a young adult beginning to face the wider world, I think it would be a gift to give such a child.
I have a similar child and we try to be very open and matter of fact about his particular learning issues. I'm not sure what the positive side to withholding this type of information really is. (Remember when we used to keep adoption a secret from children?) I think keeping these things a 'secret' (which it never really is) helps continue a sense of shame. It is nice to present this (as you have already done) as 'everyone has their particular strengths and weaknesses and these are yours'. In my personal experience I have never heard about any negative effects from helping a child identify and label their particular quirks. (Although of course this can be emotionally painful for the parents.) I know children who have done oral reports to the class on their own Asperger's and at Raskob (a school for kids with learning disabilities) students are encouraged to understand their particular learning style and how it contributes to their identity. I think being open and honest about these labels helps us take away their stigma and can increase acceptance/tolerance of our children's differences among their peers. Best wishes
Our 14 yo son is heading into 9th grade in his academic private school (he's been there since kindergarten), and we are worried. He has incredible intellectual abilities, but has verrry slow processing speed. His grades went from As to Cs and Ds this past year, mainly because he can't keep up with assignments. His work is A+, but his school values getting the work in on time, period. He won't consider going to another school at this point (we have discussed Orion with him). He has been diagonosed with Asperger's, OCD, ADHD (minus the H), Tourette's, depression, anxiety d/o nos, and volitional falsetto. He has no close friends, and only a few not-so-close friends, but he is one of the nicest guys I've ever known, and a good companion, so I'm hopeful he'll find soulmates one day. His main sadness is ''loneliness.'' We are really struggling. We would like to hook him up with similar kids. Are there any groups out there for similar teens? Are we foolish to keep him in this school? hopeful mom
Congratulations to your son for overcoming so many challenges and doing so well academically until this year! His school not offering accommodations will be a problem for high school. Orion would offer a strong social network and a great deal of support with academics, but it is full- time special education. And if your son is happy with his school, perhaps there are things you can do to make it work better for him. Do you have a handle on organizational issues? Michelle Garcia Winner's organizational DVD/workbook is good. http://www.socialthinking.com/ Plus she has social skills groups. I'm not aware of any organization that does a better job than Orion on providing a social network for Asperger's/NLD highschoolers. Anon
My heart goes out to you and your son. My son, now 17, is also high IQ, low processing speed (0.07 percentile) and also has tended to be socially isolated and inept, though recently he seems to be making progress on this. His academic troubles first became noticeable in h.s. We got him tested and found a learning specialist to help him. I'm shocked that your son's school won't give him any accommodation for his learning disability! What gives?? Do they have a learning specialist? Have you talked to them about standard accommodations? My son's school (EBWS) has bent over backwards to help him, and he's really benefitted from it. I thought most schools were eager to help with this kind of thing. If I were you, I'd start making a lot of noise. Your son's getting a raw deal, in my opinion. Write me if you want more info on how to get help. Laura
My heart goes out to you. I too have a teenage son on the autism spectrum with strong intellectual abilities, but limited social skills. I'm sorry to say that our family hasn't found a satisfactory solution to the problem you pose. The social skill groups run by psychologists such as Maria Antoniadis and Kathryn McCarthy were helpful, but not necessarily a source of actual friends. The best I can recommend are the groups formed around some of the special interests these kids tend to have (e.g., school computer clubs, trading card shops, science clubs or classes).
As for the choice of school issue, if you are fortunate enough to have the option of an independent school, it might make sense to find a place that will understand and work with your student's strengths and weaknesses to bring out his best. There are several independent high schools in the Bay Area that might be more accomodating of your son's processing issues. Urban School of San Francisco and Drew both come to mind as great high schools that reportedly do an excellent job accomodating special needs. Orion or Springstone School in Lafayette, on the other hand, have high schools specifically intended for spectrum teens and thus try to go beyond just accomodation to actually include targeted instruction on how to address and mitigate a student's particular issues. If you do consider switching schools, keep in mind that some of your son's reluctance to change schools might be due to the rigidity and resistence to change so typical of spectrum kids. Wishing you the best, another spectrum mom
My son also has Asperger's. He's in a program though OUSD, the Asperger's Syndrome Inclusion Program, which works with students thru high school. He, too, is an A student, who has found academic challenge to be essential to his well being. In his IEP, he has accommodations to deal with his difficulties with organization and time lines. He currently attends Montera Middle School and we expect him to go on with the ASIP program to Skyline for high school. Please feel free to email me to discuss the ASIP program. Lisa
Questions about Younger Children
I am trying to figure out my 6 year old son who has been rather challenging since birth. He seems to have a lot of signs of ADHD (hard to get him to get dressed and do basic tasks, high energy, combative, poor impulse control particularly re touching other people) yet at the same time has AMAZING focus (I'd say way better than his peer group) for the things that interest him such as drawing, being read to, playing legos etc. So not sure if he is just really non compliant because he is so interested in what he is doing himself or if its more than that. He has sensory issues: clothes drive him nuts. He doesn't have many friends but doesn't seem to need them either - he enjoys playdates but never asks for them - he is happy to play alone for hours. He seems very bright but also shows very little interest in academic learning - he has no interest in learning to read - I'm not even sure if he knows all his letters. I am going to get him assessed in a couple of weeks but ADHD doesn't seem quite right and yet he is clearly not quite normal. Any pointers as to what might be going on would be much appreciated. concerned mama
Hi Concerned Mama. I can't recommend enough that you look into getting your child evaluated for Aspergers or High-Functioning Autism. He sounds so so so much like my oldest boy (who has been diagnosed with High-Functioning Autism) when he was that age. I always wish that someone had suggested to me that I consider an Autism Spectrum Disorder. I never would have considered it on my own for many of the same reasons you suggest. My son is brilliant - well above grade level in math, science, spelling, vocabulary - and I didn't understand that a child could be autistic and not have a learning disability. Also, my son has always been moderately social, but has difficulty in certain types of social situations (groups) and doesn't tend to initiate play. I didn't understand that autistic children have a wide range of social fuctioning. The sensory issues would be another indicator. Also the fact that he is very focused on topics of interest but has trouble with everyday tasks (putting clothes on, etc...). What you see as non compliance may actually be difficulties with change or transitional times, or a desire to control what he can in the environment. The one piece of the puzzle I see missing in your description would be some kind of stereotyped or repetitive behaviour. This might not be the standard rocking or hand flapping that you see in the movies. For my family, the common repetitive behaviours are spinning, slamming their body into the sofa, swinging their heads, walking on tiptoes, drumming fingers, muttering to themselves, pacing... Some of these things can be less visible as ''unusual'' behaviours, such as pacing or drumming fingers.
We too thought our son had ADHD (which he does) and tried to get him evaluated, but the doctor just kept saying ''I think there's something else serious going on...'' It scared us off and we took sooo much longer to figure all of this out as a result. I just wish someone had been brave enough to say ''autism'' to us during that difficult time. It would have helped us to understand him so much better. And a couple others in the family, it turned out...
The book that lifted the fog for me was ''Hitchhiking Through Aspergers Syndrome'' by Lise Pyles, if you're interested.
I hope that I've helped you and not scared you. I think everyone was worried about scaring me, but I wish they'd said something. For me, learning enough to understand him better was a huge relief, rather than the burden I think many people expected. ASD Mom
Hi there, Our son, who is now 4 1/2 had very similar struggles. Since you mentioned sensory issues, have you thought of having him evaluated by an occupational therapist? We went to an amazing OT in Lafayette named Sheila Stosick and she was incredibly helpful. I really can not recommend her highly enough, the changes we have seen with our son have been remarkable. She is very knowledgeable and can give you techniques to help your son at home. She can be reached at (925) 935-7356 Best of luck! fellow mama
By all means, go ahead with the evaluation. No two kids are alike, including those with ADHD. It is very common for kids with ADHD to be able to focus well on things they are interested in (mine has obsessions that last for a year or more). It's the things they aren't interested in that are the problem. I suspected for a long time that there was something going on with my son, but he didn't quite fit the descriptions I read for ADHD and was always charming in the pediatrician's office. We finally got a good evaluation, and he definitely has it. Now we've taken parenting classes, had him do some therapy, etc., and what a difference it's made! It is also such a relief to have some insight into what is going on. It's certainly possible to have ADHD along with learning disorders or other issues, so it's definitely worth having a good evaluation done. Happy to have some answers
I'm a parent of a child diagnosed with Asperger's Syndrome, and when I read your post I thought that the description of your child matches that of a child on the autism spectrum, specifically, Asperger's (more than ADHD). Everything you wrote about fits my child, as well. I think ADHD and ASD are related disorders and often have similar presentations. Sometimes when doctors aren't sure what diagnosis to give, but want to give the child eligibility for services, they use ''PDD-NOS'' which stands for something like Pediatric Developmental Disorder - Not Otherwise Specified. Zoe
Sounds like Asperger's syndrome. Try Googling it and see what you think... Good luck! Best wishes to you and your child
I live in San Francisco and am looking for tips on finding help for my 9-year-old son. He has been identified for SFUSD's GATE program (gifted and talented) but also shows signs of high-functioning Asperger's -- trouble with eye contact, often doesn't respond quickly when called, very slow in getting tasks done, interests very limited, etc. As a result he has no trouble understanding but is extremely slow in getting his homework done, getting ready for school in the morning, and other time-dependent tasks. His fine motor skills seem to lag as well, meaning writing takes a long time even when he is focused. Distractions are a constant struggle. I'm looking for local resources for occupational therapists, tutors, homework helpers, etc. Any recommendations or advice are greatly appreciated. Thank you!
Ask your pediatrician to refer you to a developmental pediatrician or a neuropsychologist for an evaluation. Or ask your school district in writing to evaluate him. I have a 9-year-old who has ADD-Innattentive Type, and it sounds very similar to what you are describing. Not hyperactive, just always focused on internal distractions instead of the task at hand. Could be that, could be something else, but you really should have an evaluation and find out for sure. If it's ADD, your son is having to work a hundred times harder than the other kids in his class and may over time become very discouraged. Good luck!
My 3 year old son (turned 3 at end of April 2010) was just diagnosed as being on the autism spectrum and having very mild Asperger's. The behavioral pediatrician who made the diagnosis gave us a xerox of the clinical definition of both autism spectrum disorder as well as asperger's. When I read over the requirements to meet both autism and asperger's disorders, it seems my son is totally borderline. Some of his behaviors fit into some of the categories, but not enough of the categories to meet the actual diagnosis. We are getting a second opinion at the end of July, which should help.
In the meantime, I'm trying not to freak out. My biggest questions are - where does the autism spectrum start? and anyone else out there have a similar diagnosis for their child? It seems from what the behavioral pediatrician told us that my child is barely autistic and he barely has asperger's. Is that possible? So how upset should we be over all of this? I really just don't know what to make of it. Will he be able to grow up to have a ''normal'' life with friends and marriage and independent living?
We're on the wait list to start him at communication works in Oakland this fall for the coming school year, and I'm anxious for that to start. We want to help strengthen whatever areas he's lagging behind in, and help him overcome whatever delays he has. But because this diagnosis seems so ''mild'' - we aren't telling anyone about it (beyond his preschool teachers) for fear that he'll be viewed differently when he might otherwise ''fit in'' just fine.
any advice people can provide would be really helpful. Confused About Diagnosis
I've gotten most of my help and support from my yahoo groups. I would be completely lost without them. I belong to about 7 of them. I'm heavily into bio-medical-DAN stuff which you might not be ready for now (or ever) so I won't recommend specific groups. Just go to yahoo groups and search under autism or asperger's and join up with a bunch. After getting receiving messages, you'll see which groups you find useful and which you don't. If you aren't familiar with yahoo groups (you probably are but just in case) - when you join you choose if you want individual messages or a daily digest - choose daily digest otherwise you'll be overwhelmed. The other tip is to open a new email just for your yahoo groups as your messages are posted with your email address and although most are private some are open to the public. Either way, in 10 years time you may not want your child or others to be able to find any posts. anon
The most important task is to identify your son's deficits and critically review the therapy alternatives when coming up with a game plan. The Autism spectrum is huge in terms of how an affected person functions. Learn as much as you can from your medical providers and from fellow parents. A good website maintained by a local parent is http://www.aspergersresource.org/. Wishing you well
I really connected with your post, as we had a similar situation two years ago with our then-3-year-old son. We had been dealing with what we thought was just a speech delay, then he was diagnosed as ''borderline'' PDD-NOS. Very confusing and scary. We did hours of research, sought out TONS of advice from professionals, and got him as many forms of early intervention as we could - speech therapy, behavioral therapy, occupational therapy. This was all through our school district, and we really had to educate ourselves about special education law in order to receive all the services. What we couldn't get through them, we paid for ourselves.
Fast-forward to now: Our son still has a mild language delay, but we recently had him evaluated by a neuro-psychologist who completely ruled out ANY level of autism. Maybe he never was autistic, or maybe it was all the early intervention - we'll never know. In any case, he is a social, happy, easy-going, smart little boy who is about to start Kindergarten.
So I guess my advice is this: Hope for the best and prepare for the worst. 3 is still very young for an accurate diagnosis, in my opinion. And if it is mild autism or Asperger's, there's every reason to believe he will lead a ''normal'' life and may just be a little quirky. Don't get too far ahead of yourself; just worry about what he needs right now. It will change monthly, sometimes weekly, so be prepared to change course if necessary. Above all, trust your instincts and don't get lost in all the what-ifs. Hang in there, mama! Been there, done that
Don't focus on the labels, but what his individual strengths and challenges are and what additional support he might benefit from.
The advantage of early identification is to help you understand why some things - perhaps the way he communicates with and responds to others - might be different than you'd expect and allow you to get an early start helping him find ways to manage whatever individual differences he has so they aren't as much of a hindrance now or in the future. But the label won't give you a snapshot of who he is as an individual and what he specifically needs to be successful.
When you do choose to share this information - possibly with caregivers and teachers - it's probably most helpful if you go on to say something like, ''So it's sometimes difficult for him to ... and we've found it helps him if we ...'' You can also get them to share with you what they've found helpful.
You should also keep in mind that the designation will help you get special services through your local school district that could benefit your son. I'm not sure about your situation, but the services can begin even before regular school age and may also be available even if your child goes to private school. Parents have a lot of rights in terms of what services they taken advantage.
If the diagnosis is wrong you should certainly get a correct one, but keep in mind that getting rid of the label won't take away any frustrations or challenges you're son has and may make it more difficult to get services.
So I guess there are almost two separate but overlapping questions I would recommend you investigate - the advantages and disadvantages of having the label associated with him, and what are his specific needs and how would they best be addressed. A teacher
First of all, don't freak out at all! You don't say why you sought an evaluation and diagnosis, but it sounds like you're doing the right thing by getting some support from communication works (for social communication skills?). My son, now 17 has high-functioning Asperger's and we understand it to be on the autism spectrum, which is extremely wide (and we're all probably on it somewhere!). Diagnoses can be helpful to get services and assistance but they don't define a person. Just treat your son like any kid with strengths and weaknesses and support/encourage him. You can also simply share your concerns about his development/skills/needs with each teacher as needed. We tended to hold back and see how our son did each year, but teachers told us they appreciated knowing since it helped them figure out what he needed and how to deal with him. Good luck with your journey and enjoy your boy! Kathy
My now almost 7 year old had a similar diagnosis when he was 3. I urge you to contact your school district immediately and start the process to get him into early intervention. Where he places on the spectrum is not as important as whether you can get services for him. It is great that you have already looked into Communication Works, we went there too, but what has been shown to make the biggest difference in spectrum children is 25 hours a week of intensive early intervention. Our son was placed into a preschool program with other high-functioning children on the spectrum. He had a great teacher, and he made huge progress almost immediately once he started.
Tell people as you feel ready. You are going through your own process right now and may not be ready to share his diagnosis with others until you have come to an acceptance of it.
Please try not to worry about the future. It is hard not to, but worrying is unproductive. If you would like to read about someone with Asperger's who is living a productive, independent life with friends and relationships, I recommend ''Born on a Blue Day'' by Daniel Tammet. Feel free to email me as you have other questions. Brenna
Whew you have a lot going on. I have a 14 year old son and we went through a similar process with him when he was young. You are on the right track getting his evaluation and other opinion. At age 3 the main thing is not the diagnosis but the information gained through the testing. That will guide you in how to help your child.
I'm so sorry for the anxiety you're experiencing. I'd like to recommend the blog of another East Bay mom who has written eloquently for the past few years about having a son 'on the spectrum'. She writes very well about the whole journey. http://hyperlexicon.blogspot.com/ thanks & best wishes
I just got an Asperger's diagnosis for my 3 year old, too! I'd love to chat with you about it. I don't have a lot of advice yet, since our diagnosis is only about a month old, but I can certainly commiserate with your stress and confusion.
My 5 year old was diagnosed with Aspergers. I'm finding it all a bit confusing too, especially since the Asperger diagnosis will officially be folded into the autism spectrum disorder category (keyword being that it is a ''spectrum'' and can look different among different kids). Our dev. ped. said to focus less on the diagnosis and focus more on getting the roadmap of interventions to help support them, whatever that may be. We just started at Communication Works and really like it. My take on sharing the diagnosis is to share it as needed with those in a position to help get the support services and with friends/family that ''get it.'' At least up through kindergarten I have felt like expectations have been so loose that my child would not have stood out as different but I am really glad we are starting interventions now because I can already see how the social environment changes in the upper elementary school grades. As for the future, try not to expend the emotional energy thinking about something that no one can predict (especially since living with an ASD kid requires all the energy we've got!)It sounds like the diagnosis is pretty mild so as your son gets older, he will develop skills and build a life that accommodates for his strengths and weaknesses. They'll always be quirky but quirky adults do just fine.You deserve a HUGE! pat on the back for starting this now - I really wish I had started earlier. anon
I have a similar child who is much older than yours. I know this is a hard time and that you are looking for answers. It might help to know that you are confused because the whole concept of what constitutes an 'autistic spectrum disorder' is confusing and vague. You will receive conflicting diagnoses for your child because unfortunately we do not have a lot of research based knowledge about autism and how it is related to neurotypical development. There is no biological test for 'autism' so experts make the diagnosis through eyeballing your kid and each expert interprets the DSM guidelines differently. Also, I know dozens of families who have children with autism and each and every one of those children has very different skills, assets, and deficits. Right now autistic spectrum means so many different things it is losing its usefulness as a term! You should definitely get a second opinion but much more important than the label or diagnosis, try to focus on your child and what he needs to learn how to do to become a well-rounded person with good social skills. Communication Works is a great place to get services and they will help you break what seems like an overwhelming task into small manageable pieces. Best wishes
Our oldest son got a autism diagnois a little before he turned 3. We thought the developmental pediatrician who gave it to us was a little bit of a quack, so we went for a second opinion. The second guy told us that our son was mildly on the spectrum. We had someone else see him (preschool's doing, not ours) who said he was absolutely fine, just smart and having trouble relating to peers because of it.
So, he was either autistic, had mild aspergers, or fine. But what we did know was that he did have some trouble with social relationships so we signed him up for a social skills class which I think helped. We'll probably do it for a second year just to get him on even more solid footing but if we couldn't do it, we would feel okay about where he is. We also worked on having 1-on-1 playdates which gave him a chance to practice his skills. We also didn't tell anyone because we don't want him to be labelled.
As for the future, who can tell? But a friend of mine said something about it not being surprising our son was diagnosed since my husband had a lot of the same characteristics. Which, it is true, he does. But he has a very good job and had a string of girlfriends before me, has some friends, and now he is married with 3 kids. He is a good, sweet kind man and I wouldn't trade him for anything. Anon
We have two kids diagnosed with Asperger's in our family, both 14 now. I would love to be able to chat with you, but i am new to BPN and I'm not sure how to connect? However, I can tell you a couple things here. The diagnoses may be frightening, and we are always taught labeling kids may limit them, but this is not true! Those doctors have given you a great gift. Make sure you have the diagnoses in writing. There are so many services available under ADA, doors will be open that if your child does struggle in large groups or chaotic classes later, you will be protected. Remember this is who he is. That little miracle will have challenges (don't we all), but he will also have strengths. Google Tony Atwood, he's the Guru on aspergers, but there are lots of others. BPS has paid for fantastic ''non public'' schools! Jill
Hello, I don't have a child with Asbergers, but I grew up with my stepbrother who has Asbergers for 15 years in the same house. I have to say that he is one of the most brilliant people I know, extremely kind and curious, and just generally a nice person. He was diagnosed in junior high, but it wasn't until high school that he began to have extra help at school. He had a special tutor that was provided by the school that made sure he got to all his classes during the day. He had a hard time remembering to do basic things, like getting up and going to school, but he scored a perfect score on his SAT's! He is 25 now and lives with his mom (but lived on his own for a few years). He is able to hold a job, but can't drive because he is prone to seizures. He is one of the most intelligent people I know but has a hard time with common sense decisions. I would say that he is a happy person, but he is very special also. I wish you luck and patience, but I have to say that I am happy that he is in my life, exactly the way he is :) Carmen
It is so confusing and scary to get those diagnosis. The good news about a diagnosis is that it may open doors to funded treatments if they are needed. Beyond that, try not to freak out. He is still your same sweet little boy and whatever challenges he has can be addressed. He is not the diagnosis, he has loving caring parents, and he has plenty of opportunity to deal with whatever is going on.
Communication Works is wonderful. They are effective and professional and don't go for the dramatic just for what works. I think you will be very happy.
I too work with kids of all ages with diagnosis and without that have challenging behaviors that either make it hard for them to learn or to socialize/connect or otherwise be at ease in the world. I find that it is important to address the child where he is and not the categorization that he has been placed in. Underlying causes of the behaviors that you refer to as ''borderline ASD'' can be determined and treated.
I would be delighted to talk with you about this and help you come up with some options. One way of looking at this is that you now have some information that you can use to find the best way to help your son be happiest in life. Let me know if you would like some support
A diagnosis of ASD is not a death sentence! I don't say this to be flippant or defensive or cruel, I say it because I was once where you are now and I now have the benefit of it being 6 years later. I know you're freaking out, there's a lot to process here, asking for help is a good place to start.
3 yo is awfully young to get a dx of Asperger's, IMO, but it's simply impossible to say where the spectrum starts; who's to say what ''normal'' is, anyway? As you know there's no predicting the future, but you can feel better knowing that the sooner you start services with a child on the spectrum, the better the long term prognosis will be.
So, try to think of it not as a label but as a tool. There's something going on with your son that prompted you to see the pediatrician in the first place, and now you have this diagnosis which you can use to get your son whatever services he needs; without the diagnosis, services are harder to get. It's a sad but true fact about ''the system.'' But now you can go to your school district and get an IEP and he will be protected by federal law, and with that you can help him with whatever he needs in order to live his life. You are his greatest asset!
Feel free to contact me directly if you have any questions or if you want to freak out with somebody who has freaked out, herself! Jill
I have a son (now 11) who has the same issues. He has very mild Aspergers, diagnosed 3 years ago. Most people who meet him now would never know. Regarding the diagnosis, you can look at it as a blessing. It doesn't change who he has been and who he is, it merely opens up a world of services at school, especially public school. There must be behavioral issues or you would not have sought diagnosis.
I didn't tell him about it until last year and he was quite upset at first but he tells people about it himself now. When he was little he had many behavior issues which were often stressful. Tantrums, pickiness, things had to be a certain routine. As he gets older it gets so much better. We are constantly blown away by how smart, funny, and aware he is. He is an unbelievable reader and interested in just about everything and able to entertain himself for hours. And yes, he is finally making friends. It is important to have perspective and to know that it gets better. Do not sweat the small stuff, choose your battles carefully, and make sure his teachers are not head-butters, but understand his thought processes and what makes him tick. Who his teachers are is extremely important, I can't stress that enough. Good luck.
I'm fairly certain that we will be in the same boat as you are when my son gets and official dx in a few months. He's been in early intervention services and is making amazing progress. A lot of his more worrying autism red flags seem to be fading away a bit. I've realized that whatever the diagnoses, he'll be ok. He's smart and sweet and will still be the wonderful person that he is - despite whatever challenges come his way. If you think about it, every person has his or her own challenges to overcome. You'll be lucky, because you can read up and understand the challenges and learning differences that your son may have and be able to help him.
I won't be surprised at all if I'm told my son has Aspergers or is borderline. I was researching it a few months back. (I hadn't paid too much attention to Aspergers as my son has a speech delay and Aspergers kids tend not to have speech delays -- although, I believe they're reclassifying that.) Anyway, I looked up Aspergers symptoms in adults, just to understand what challenges adults face. It basically described my husband! I almost fell over, but it made so much sense. It also shed a lot of light on his father (my father-in- law) as well. After the initial shock and head-spinning (I still haven't mentioned it to him), it was actually a comfort. My husband is warm, gentle and loving and a wonderful father. He has a great job and lives a happy life. There is nothing 'wrong' with him. I've always known that he's wired in a totally different way than I am. I think my son is wired like his dad. As his speech therapist told us -- autism is a difference in learning style. So you're lucky that you'll understand how your son learns. I think you're right not to tell people for now. We've kept it to ourselves too. But I think it's a question I'll really struggle with. It's a shame we can't get in touch with each other. Perhaps through the moderator? Good luck. Anon
Try Care Parent Network, Martinez, Ca (Louise Schneider) for Asberger support groups or
Elizabeth Sautter, M.A., CCC Speech Language Pathologist/Director
Communication Works Speech* Language* Social Learning 4400 Keller Ave, Suite 200 Oakland, CA 94605 510.639.2929 phone 510.639-2977 fax
Education.com has a great special section on Aspergers right now. I found some really helpful articles. Will give you some good insight. They even have articles on 'after high school' and reflections from people with Aspergers. Hope this helps. http://www.education.com/special-edition/aspergers/ -I get it
I was surprised by the responses you got, since they mostly didn't address your doubts. A second opinion is a very smart idea, and you may also need to be patient and see how he develops. My son, now in college, was given a diagnosis of an autism spectrum disorder when he was ten or eleven.
Although we accepted and worked with the diagnosis through middle school and most of high school, it turned out to be completely wrong. During those years, many ''experts'' believed that he had mild Asperger's and others said he had some sort of atypical high-functioning autism. They all leaned on the ''spectrum'' part of the diagnosis to explain why he was so unlike the other kids with Asperger's/HFA/NLD at school. He was not helped at all by this incorrect diagnosis, which led to ineffective treatment, lowered or inappropriate expectations, and a great deal of frustration (and justifiable anger on his part). He only began to reach his potential in a setting where some smart, experienced people were willing to approach him with a clean slate and figure out from scratch what works for him. Good idea to keep the diagnosis private for now -- I can't tell you how many people out there probably still believe my son is autistic. Hopefully you will learn more once the speech and language people have had a chance to work with him for a while. One thing we learned is that science still doesn't know all that much about the brain, though they're discovering so much all the time. There may not be a name for whatever your child is experiencing. There's no specific diagnostic label for our son, though the people who were successful with him can describe in detail the types of language processing difficulties he has (which are quite different from the language issues associated with the autism spectrum).
There is a poetry chapbook by Rebecca Foust, Dark Card, about a son who is on the Spectrum. It gives a lot of insight about her feelings as a mother, as well as her son's experiences. Carol
Our daughters are both in the second grade at the same school. We've been friends for three years, but not close friends. Her daughter ''E'' has been tested and is ''profoundly gifted.'' My daughter is an average student in the same class.
E has a habit of ''checking out'' ALL OF THE TIME. Mom has mentioned it to me and others. The child has many of the symptoms of Asperger's Syndrome, no eye contact, social behavior several years younger than actual age, has difficulty carrying on a conversation, retreats after 5 minutes or so of social contact, etc. I mentioned Asperger's casually once and Mom made a statement similar to ''profoundly gifted children often look like they have a problem, Asperger's, ADHD and others - it's because people don't understand profoundly gifted kids.''
School has started and E's symptoms are more pronounced than ever. Someone who has known E for most of her life said ''It's like there's NO spark left. It used to be she checked out 50% of the time, but since the end of last school year it seems as though nothing is inside the shell any more.''
Do I say something? If so, how do I say something? Since the girls are in private school, there are not the assessments and the therapy available that would be given in public school free of charge. It should be stated also that this is a single mom on a limited income. Want to do the Right Thing
My 3rd grader has Inattentive ADD and sounds a lot like this girl that you think has Asperger's. He appears to be checked out most of the time, has immature social behavior, has difficulty carrying on a conversations. So no, I don't think you should say anything, because you have no training or background to make a diagnosis, and you may very well be completly wrong. And even if you did have the background, you would be out of line approaching the mother about it. Supposing that you WERE a developmental pediatrician or a neuropsychologist, the most you should do is mention your concerns to the teacher and then leave it at that. Mostly likely the teacher is already aware of the situation. But I don't know any professionals who would offer unsolicited diagnoses to people they don't know very well. I think it is considered unprofessional. What is particularly concerning is that it sounds like you have already discussed E with Someone who has known E for most of her life. This is gossip, you know, not concern for the girl.
You already did say something to the mother and you already got your answer. The mom's on top of it. This girl has been already been seen by child psychologists for testing and the mother is already aware that her daughter's behavior may appear inappropriate (hence her explanation to you which you seem to be ignoring). Please think carefully about your motives before you diagnose another's children with a vogue disease like autism. Autism spectrum disorders are ever present in the news these days, so many believe they are have become diagnostic experts. 'Checking out' and 'having no spark left' are not listed in the DSM manual as symptoms of asperger's. If the girl is checking out and has no spark left perhaps she is having a hard time for some reason. I really don't see how this is any business of yours (you're sending in an email about someone else's child who is not even a close friend?) and while you may be sincerely conerned you do not sound that way in your email. MYOB
Hello, My name is Gita and your question caught my attention because my brother has Autism, though he is extremely high functioning that it borders with Auspergers. You seem like you know much information about Auspergers, so I thought I would mention a few things. First of all, depending on how close your friendship is with the mother, she might be offended at first, but if for some reason her daughter does have Auspergers, the sooner she finds out the better. My brother wasn't officially diagnosed until he was 17 years old and my mother had to fight and fight to get help for him before that. My brother is very, very intelligent, you could even call him ''gifted'' that doesn't make the fact go away that he has a lot of social problems dealing with people, expressing himself, etc. He was the only person in his adult help class that graduated high school and attended a community college. In the end, I would recommend that you say something like, ''I don't want this to seem offensive or have you take it the wrong way, I'm just concerned that you might want to get ''E'' tested for Auspergers.'' It is not an easy thing to hear or say, but the better she knows one way or the other, the better. I hope this helps. If you have any questions, let me know. Good luck. Gita
I can't speak to what to suggest to your friend about her daughter - perhaps it would be better coming from a teacher or a member of the clergy she respects? Does your school have a learning specialist who could talk to her? However, she should be aware that even if you are in a private school the school district is obligated to provide assessments (as opposed to services and remediation). anon
Wow, that is a really tough question. On the one hand, you want to help this little girl and do the right thing, on the other hand, you don't want to encroach on another mom's parental boundaries. Who's to say she's not right about how profoundly gifted kids seem? (I have absolutely no clue!) A quick google search turned up this article: http://www.gt-cybersource.org/Record.aspx?NavID=2_0=11381
My advice would be to say something, maybe do a little research first and be armed with an article, about how the two can look similar, but it's still best to ''know.'' Emphasize how worried you are, how you've noticed a change lately, and how much you want to help. Even if you go to private school, she might still be eligible for an assessment through whatever you local school district is, it wouldn't hurt to make a call to the district's Special Ed office just to see what they say. Good luck, this is a tough one Jill
All children, including those in private school, are entitled to a free public school assessment for ''all areas of suspected disability.'' The procedure is to write the special ed director of your public school district, and request an assessment. However you're correct that as a private school student, she probably would get the free public school therapy. As for whether to tell the parent you suspect Asperger's -- No. That suggestion should come from the teacher or school. Although you may be correct in your suspicions, she'll hate you for saying so. Besides, it's not like the parent hasn't heard it before, and she's obviously not receptive. Parent of special-needs kid
It is quite possible for a gifted child to look very different socially from other kids. They wouldn't even need to be ''profoundly'' gifted. But, they still may need additional support and evaluation. Before having kids, I had worked extensively with an autistic child and was quite aware of autistic spectrum disorders. When by 18 mo., I saw some unusual behaviors in my own daughter, I was concerned, but others thought I was being hyperaware due to my knowledge of the issues. When by 3, she continued to be very social with known adults, but have virtually no interest in other kids or in things most kids are drawn to, I was concerned. Her preschool teachers were too. We had a social worker come in and observe her in the classroom. After the evaluation, it was recommended that a psychologist come and observe her and that she go through some developmental testing. He said that there were definitely social differences there and that she wasn't typical, but that she is probably just very smart and as the psychologist said ''quirky.'' She has since become much more social and at 7, one would hardly notice any differences. That said, I did and do often have to do ''social coaching'' with her to help her engage appropriately and want to engage with other kids and I make an effort to bring and keep other children in her life who are also smart and ''quirky'' and that she truly enjoys and relates to. So, this kid may not have Asperger's, but still may need other forms of support. Two good books are Bringing Out the Best: A Guide for Parents of Young Gifted Children and Raise Your Child's Social IQ which discusses social coaching and areas to coach around. The Bringing Out the Best book does a wonderful job of pointing out both the blessings and the challenges, many of them social and emotional, that parents need to help gifted kids work through. hengel
I actually assess people on the Autistic spectrum, as a job. I can tell you that a parent will not listen if they are not willing to. The most you can do is point out to that parent that the child seems to be changing, withdrawing or whatever you have noticed. If the teacher sees it also, and the parent hears it from more then one source maybe they will act on it. There are not a lot of services for people with Asperger's unless parents want to pay out of pocket but there are some clinicians who are are experts in such diagnoses. I strongly suggest not going to just anyone but letting that person do some research about experts in the field. They won't believe the results unless they are really open to it. Frequently, Asperger's does not get diagnosed until 8 years old or later since the child usually just seems 'bright' and 'a little different'. If it is a good friend of yours, be careful about alienating the friendship and being too pushy. Go at that parent's pace about hearing what is 'wrong' with her child. Good luck
Thank you to those who had generous advice about not saying anything. The teacher did talk to ''E's'' Mom and got her a free assessment through the School disctrict. ''E's'' Mom is overwhelmed, yet releaved to have a diagnosis. Interestingly enough, the School District has offered some services as well at no charge. ''E's'' teacher was also able to find services closer to her school in Berkeley through UC. So, to those parents who said ''Don't Mention it again'' you were right. All's Well that Ends Well
Hi, I'm looking for someone who does testing for Aspergers Syndrome (for my 8yr. old son) who accepts medi-cal, or has a low fee. Thank You. anon
Request testing through your son's school district. They will identify if he has Asperger's based on an educational psychologist's testing, and provide him the support he needs. Asking your pediatrician for a referral could work in the medical setting. Laura
We ended up going through the RCEB (Regional Center of the East Bay). Service and diagnosis was free, but the wait was significant, so get onto their radar ASAP. Their office is in Oakland off of 66th/Zhone. Good luck! Stephanie
Contact the Regional Center of the East Bay. I believe they have free testing. Anon
My husband and I have a strong suspicion that our 2 1/2 year old son has Aspergers Syndrome, and both my mom and our nanny have also had the feeling for some time now. I've contacted the pediatrician, and he said the first step was to take our son to a speech pathologist. Right now, I'm just feeling so overwhelmed with sadness and guilt. I want to do what's best for my son, but I just don't know where to start. Are there any support groups out there? We live in Walnut Creek. I'd appreciate hearing anyone's story of the steps they took to diagnose their child, and the treatment/help they got. Thank you. sad mom
There's a wonderful Aspergers support group in Walnut Creek - they meet the second Monday of every month at the Barnes and Noble in downtown WC. Here's the web site: http://www.aspergersresource.org/ Jackie
Hi, I suggest that you contact Annette Blackman, PhD. She is a clinical psychologist specializing in the care of children and young adults with Asperger's Syndrome and other conditions on the autism spectrum. She works for Contra Costa County and both provides individual attention and counseling and runs groups. Her contact number is (925) 323-8814. Best wishes, Howard
I am so sorry you're going through this and I understand how difficult this must be for you. :( It's important that you get support for yourself as well as for your child. There are a lot of resources online and I'm sure somebody will speak up with a support group local to where you live.
I'm not an expert, just a mom of a child with autism, but I disagree with your pediatrician. I think the first step would be to get a diagnosis, and you can't get one from a speech pathologist. You can call the Regional Center (rceb.org) or you can go to a private doctor (I recommend Dr. Erica Buhrmann in Albany (510) 540-5320). I've also heard that Dr. Brad Berman is good (I think he's at Children's Hospital? I don't remember), unfortunately if you go with either the Regional Center or Dr. Berman, you'll probably get put on a long waiting list, so if you can afford to see somebody privately, that's your best bet.
Once you get your diagnosis (and who knows, you might be wrong!) you'll be able to make a better choice about what to do next. In the meantime there's a lot of reading you can do online: http://childbrain.com/pddassess.html is good, so is http://www.autism.com/ari/atec/atec-online.htm and also some online support groups http://autism-pdd.net/ Feel free to contact me directly if you want, I've been there!!!! Jill
I am so sorry. I just went through this last year (my son's eventual diagnosis was PDD-NOS), so I know the pain and guilt you are going through. The good news is that the earlier you can identify the problem and get help, the better your son's chances are. Because there is about a 3-month waiting list for everything, I would pursue multiple evaluations - with a speech pathologist and a developmental pediatrician - simultaneously if you can swing it with your insurance. Also, because he is 2 1/2 , call the Regional Center for an evaluation (you may want to call them first). http://www.rceb.org. If he qualifies, they will provide services until he is 3, and then the school district takes over. Also, the Care Parent Network (http:// www.contracostaarc.org/html/care.html) can refer you to more resources. The best bit of advice I got was try not to think too far in the future, just concentrate on the next 6 months. Take it one step at a time, get him evaluated and then you can look at options for treatments. Every kid seems to have a different grab-bag of symptoms and responds differently to treatments, so what is appropriate for one child may not be be appropriate for another. I am in Oakland, but feel free to contact me if you want to talk. B.
Dear Sad Mom - I went through what you are going through about one year ago with my son who is now 4. First, let me just say that the beginning of it all was the most hectic and overwhelming for us -- it does get better. We started by having our son assessed by a developmental pediatrician, Erica Buhrmann (510-540-5320). She did an evaluation with him in her office, observed him in his preschool setting, and then met with us to discuss her thoughts/diagnosis and give recommendations. As my son's problems were primarily language- based (social or pragmatic language), we next saw the Speech therapists at Speech, Inc. (510) 835-2757 (they have offices in Oakland and San Francisco) and began speech therapy with them shortly thereafter. As we moved along, and learned more, we added more therapy (OT, an integrated playgroup, Floortime therapy). If your son is under 3 he also may qualify for services through the Regional Center - I have no experience with them but you may be able to find more info on this listserve or just by using google for East Bay Regional Center. Once he is 3 years old, you should write to your local public school district and request that your son be evaluated for an Independent Educational Plan (IEP). The school district will do an assessment and if he qualifies he will begin to receive services through the public school as well. (As an example, although we still do private Speech and OT, my son also receives Speech, OT, and a part-time aide in his private preschool through his IEP ). There are also online parent groups that you can join and get more information about local services, support etc. If this interests you, email me directly and I'd be happy to have you invited to join the Bay area pre-K ASD yahoo group. Finally, on a more emotional and happy note -- therapy DOES WORK! After a very hectic year of lots of worrying and lots of therapy, our son is doing amazingly well -- we couldn't be happier or more amazed with the changes we've seen in him this year. Hang in there and best of luck! c
Hello, I saw your post on BPN and it sounds oh so familiar..My son was just diagnosed a couple of weeks ago after spending time on a waiting list for assessment. The best advice I can give you is to call the Regional Center immediately and get on their waiting list for assessment. If your son is diagnosed before they will provide therapy services free of charge until he is 3 at which point the school district will take over with these services.
I'm not sure what issues you are dealing with but it couldnt hurt(as your ped suggested) to go to a speech pathologist as you may be able to get a speech assessment through them, HOWEVER I strongly recommend calling the regional center as they will do a full assessment- which unlike a speech assessment would be able to indicate things other than just speech issues (occupational, speech, behavioral etc.) It wont hurt to get speech therapy in the meantime, but since there is a wait list to get a full assessment it would be nice to be on that list now just in case there is something else going on and the therapy doesnt do as much as you might of thought it would. There are a ton of helpful websites, although until you have a diagnosis it will be hard to know which direction to turn. I know the feeling- I knew something was going on but until an assessment and diagnosis there is a lot of waiting and speculation. I would definitely be interested in meeting up sometime, my son is close in age to yours, and we live in Oakland. I was actually going to post something this week looking to connect with other parents so that we could provide support, exchange resources and form a possible playgroup. Also my little one is awake right now but if you contact me I might be able to suggest some websites that you might find helpful..Best- lily
My information is a little old because my son is now 17, but I was very happy that I took him to be diagnosed by Dr. Bryna Siegel at the Dept. of Psychiatry in UCSF. She is extremely knowledgeable and was very positive about his future. For therapy, I used BIA, Behavioral Intervention Association, which I believe is used by several school districts now. Their website is: http://www.bia4autism.org/ Asperger's Syndrome and Autism Spectrum Disorders are not that unusual nowadays so you can probably find a support group quite easily. The Special Needs Network, which is a Yahoo group at http://groups.yahoo.com/group/specialneedsnetwork/ may be able to help you. Lastly, if you want to get some books, there's the Autism Asperger Publishing Company at http://www.asperger.net/ I am still sad about my son too but I realize now he will find his place in the world. He's always going to be a little different but he's a smart, loving, funny guy and I am hopeful that he will do well. Nancy
Dear mom, what you are going through is difficult but you will be ok - hang in there. I run a parent support in Oakland but there is definitely one in Walnut Creek. The organizer's name is Karra Barber and I think if you google her name you will be able to find contact info for Karra or her group.
An assessment by a speech/language therapist can be a good place to start. You can contact the Regional Center and ask them to evaluate your child. You can also set up an evaluation with a developmental pediatrician - your regular ped can help you with this. My son was diagnosed 5 years ago and it felt like the end of the world but I assure you that it isn't. best wishes and feel free to e-mail me, Laura
I am sorry that you are so sad and grieving. First off, see the beauty and special traits that your son has. Don't look at what's missing but look at what is there. I would say this to any parent regardless of the problems. Now, to address Aspergers. I am a licensed psychologist who diagnosis autism spectrum disorders. Typically, Aspergers is not evident until at least 5 but usually not until 7 - 8 years old. You don't say why you have the concern so I can't address the specific behaviors. I suggest calling the Regional Center of the East Bay, specifically the Early Intervention Intake unit (they evaluate and serve children until 3 years of age). If you have Kaiser, you can also go to them with your concerns. Again, love your son and teach him as best you can with the skilsl you have. THere are tons of books and websites and support groups but I recommend books by Dr. Bryna Siegal and Dr. Barkley (I can't remember his first name). Read before you diagnose your child. Good luck and hope this helps. Autism Expert
Call the Regional Center of the East Bay- they provide services for children under 3 and will get you all of the evaluations that you need. If it is determined that you only need speech therapy, they will find you a therapist- if you need more you will get more. All of this at no cost to you. good luck
I am so sorry. I just went through this last year (my son's eventual diagnosis was PDD-NOS), so I know the pain and guilt you are going through. The good news is that the earlier you can identify the problem and get help, the better your son's chances are. Because there is about a 3-month waiting list for everything, I would pursue multiple evaluations - with a speech pathologist and a developmental pediatrician - simultaneously if you can swing it with your insurance.
Also, because he is 2 1/2 , call the Regional Center for an evaluation (you may want to call them first). http://www.rceb.org. If he qualifies, they will provide services until he is 3, and then the school district takes over. Also, the Care Parent Network (http:// www.contracostaarc.org/html/care.html) can refer you to more resources.
The best bit of advice I got was try not to think too far in the future, just concentrate on the next 6 months. Take it one step at a time, get him evaluated and then you can look at options for treatments. Every kid seems to have a different grab-bag of symptoms and responds differently to treatments, so what is appropriate for one child may not be be appropriate for another. I am in Oakland, but feel free to contact me if you want to talk. Brenna
Our good friends have a little boy on the Autism Spectrum. He is 8 now and doing pretty well. We all went through the diagnosis process together before he was 3. It can be really difficult, but the more information you have, the better your decisions will be. My advise is to initiate the evaluation process because it all takes time. The speech therapist will let you know if other evals. are recommended (e.g., developmental pediatrician, OT or PT) The speech therapist our friends used was Laura Townsend. She has an office in Rockridge now. (925) 984 6067. They found her to be a wonderful support throughout the evaluation process and following therapy. Good luck. I hope this helps. Josh
I highly reccomend skipping the therapist and going straight to Children's Hospital Oakland Dept of Behavioral & Developmental Pediatrics. My child's care is overseen by Dr Daly & she has been exceptional. A Developmental Pediatrician, not a speech therapist should first provide a diagnosis (not always possible at 2.5yrs) and then direct your son's care. There is a good chance a doc would reccomed a speech therapist but may suggest other things as well.
The process at Children's feels long - they will mail you a form, you fill it out & then they send you a letter & then you can make an app't. I found it actually went pretty quickly (the receptionist person made it sound longer) but I called in about once a week to check progress. They take most insurance. The number there is: 501-428-3006. good luck
http://www.udel.edu/bkirby/asperger is a terrific website for starters. This site has parent forums and lists of all kinds of resourses both nationally and locally. You can also post on this site to find local support groups. I would guess you should see a developmental pediatrician (Dr. Josephine Lindt in Albany on Solano is great) . I am a teacher who runs a toddler program and often work with childrens who have aspergers. j
You probably want to see a developmental pediatrician to get an official diagnosis, if you feel you need that to move forward with treatment. Then (or now!) GO TO www.generationrescue.org-- there you will find the information you need to move forward, and the hope and inspiration to do so. Hopeful for all affected children
Where to start -- make an appointment with a developmental pediatrician or with a neuropsychologist. Children's Hospital offers this. Contrary to what's been posted, Asperger's can be diagnosed much earlier than age 6. Bryna Siegal has a history of testifying for school districts and also testified for the province of Ontario to deny children much-needed therapy. Also, just because a company works in several school districts is not a recommendation. Some people will have good experiences, others will have bad. It's really a matter of who fits with your particular kid. My experience with BIA started out well but as my kid improved the directors became very controlling, insisting that I fire my speech therapist because they knew what was best. anon
Contra Costa County Mental Health has services that specifically target youth with Asperger's Syndrome. The contact person for these services is Dr. Annette Blackman. Howard
I suspect that my 11 year old daughter might possibly have a mild form of aspergers syndrome. Does anybody know of a professional that might advise me as to testing or further help? I also understand CAL offers a socialization camp and would appreciate any feedback on that. Many thanks!! confused
You can see a private Developmental Pediatrician, I like Erica Buhrmann in Albany. But if your daughter is in a public school, you can have her evaluated by the district; contact the Special Education department or the school psychologist. You can also try the Regional Center (rceb.org) but I don't know the details of their evaluations for kids that are older than 3. You can also read the many, many websites that are out there. There's a good test at http://childbrain.com/pddassess.html also at https://www.autismeval.com/ari-atec/ they're not meant to be diagnostic tools, but they can help provide you with more information. Good luck! Jill
I highly recommend Dorine Slocum, of Vida Behavioral Solutions in Oakland. She's the first non-relative to really ''get'' who my son is and what he's about. Aspergers/autism/spectrum disorders run in my family - my son has seen his share of therapists, and he's only 9! Consequently, he was very resistant to the idea of meeting her; after their first hour together, he speaks as enthusiastically about her as he does about his favorite family members. Dorine is putting together groups of kids, and she also works with kids one-on-one. Her number is 510-835-1272, and she's online at www.vidabehavioralsolutions.com if that's easier for you. She really is great! Kat
If you suspect your daughter has Asperger's please start the assessment process now. You can have your pediatrician refer you to a developmental/behavioral pediatrician, you can have her assessed by your local school district and/or you can have her assessed by the Regional Center of the East Bay (383-1200). There is a lot of support and resources out there and many families with children with Aspergers who would probably love to share their resources with you. You are headed in the right direction because you are asking the right questions and getting more information. I believe a psychologist or developmental pediatrician can make the diagnosis. good luck. Anonymous
Dear Parent, my 8yr old son was diagnoses with Asperger Syndrome 4yrs ago. If your child is a public school you can request an assesment from the school psychologist. You could also have an evaluation by a developmental ped or neuropsychologist - these will be expensive and have a long wait but are very comprehensive. You might try speaking with your regular ped, if you have not already done so. Some are helpful on these matters and others are not. The developmental ped we see is Dr Brad Berman 925-279-3480 and the pediactric neuropsych we see is Dr Caroline Johnson 843-2005. I believe the camp you are interested in is run by Dr Jennifer Selke - I don't know much about it. L
Hi - I would like to hear from anyone with experience in in our situation. Our five year old son will begin kindergarten in the fall at an Oakland public charter school. We suspect that he may have Asperger's syndrome or another spectrum disorder (PDD-NOS), and will hopefully have him evaluated at UCSF within the next two months. He is a very smart, energetic and sometimes emotional child with some speech delays, and has a little trouble picking up social cues from other children. Are there any parents who have children with Asperger's or another disorder who's children are enrolled in public school? Are your children on IEP's? I would really like some feedback on your experiences in dealing with the school/teachers, as well as feedback on how your children have been able to learn and function in the classroom. My husband and I feel that our son has the ability to do well, but worry how much of a struggle it might be, more so socially. This possilbe diagnosis is a lot to deal with, and we are learning as we go. Thank you for your time. cj
Although my son doesn't have Asperger's, he is on the spectrum. He is highly intelligent, but he does have social skill deficits and some processing issues. We go to a private school in Oakland, but we do have the equivalent of an ''IEP'' which has been vital to making sure he has what he needs to function and succeed in school. I would HIGHLY recommend that you get one asap so you get the services you need in the public schools. Also, because we are in a private school, we have to pay for outside services. He is currently working with Kris Neugebauer in Alameda on ''social pragmatics'' which is just what it sounds like--learning social skills to get along in life, such as conversational skills, meeting/greeting/leaving people, reading social cues, etc. It has been enormously helpful-- perhaps there are services through the public school that provide the same thing, but an IEP would ensure that you get whatever is available. [Kris Neugebauer is great and you could call her for information/advice. Phone is 510.306.9066. She also helps write IEPs.] Good luck. It's a process, but help is out there. A Mom who has been there
My son has some Asperger's characteristics but did not receive that diagnosis. My thoughts are based on our experience with services provided by school and services we have obtained separately. Yes, you will want him to be evaluated for an IEP. First, does the charter school have a resource specialist? If not, you might want to reconsider that choice for him. Second, is the school sponsored by the Oakland Unified School District? If so, OUSD's exceptional children program should oversee the evaluation. Here's their link http://pec.ousd.k12.ca.us/index.html
Even if the charter school is not sponsored by OUSD, you should contact the exceptional children program if you live in OUSD's area. Your UC evaluation will give you the ability to request an IEP. That request needs to be made in writing. The key to helping children with atypical neural development is early and continuing intervention. The school will provide some services. You should do more if you can. You mention social skills issues. We used Ann Martin Children's Center. The Center for Social Thinking has been recommended as excellent. Their link is http://www.socialthinking.com/ It won't be easy but there are a lot of resources available now. I hope your path with your son is always one of progress. anon
Insurance will pay for your child to receive services for social skills before kindergarten. I am a speech/language therapist in the Berkeley schools and two children on my caseload have continued therapy with a speech theapist at Alta Bates, and 1 attended a social group, I beleive with Children's Hospital (not sure). The schools are required to take referrals for preschool age children, even if they are not enrolled in the public schools, and provide services if they qualify.
When your child attends a public school the school is required to provide services if he is diagnosed on the spectrum or with a nonverbal disorder. In our district the speech therapist and full Inclusion teacher provide services. Many speech/language therapists speacialize in Asperger's and nonverbal disorders. The most useful training I have had (also open for parents and on DVD)has been Michelle Garcia Winner's (speech/language therapist) 2 day seminar, a few of her books, and Carol Gray's social stories. I recently ordered a highly recommended book by Dr. Tony Attwood ''Navigating the Social World'' Therapy focuses on eye contact, body language, interacting with peers, whats expected/not expected in different environments, taking turns, ect. The amount of info available can be overwhelming.
The schools are great because we can access their school environment. Make sure the therapist at your son's school has some training. My first case for a social skills only student was 4 years ago. Every year the numbers grow and it is now a significant part of our caseload in Berkeley Schools. I would definately meet with the school principal, speech therapist, school psychologist, and district office special education program supervisors ASAP to get the process started and get your child on their mind, otherwise, it can take a painfully long time to receive services.
Info RE: Michelle Garcia Winner Center for Social Thinking 3550 Stevens Creek BLVD. Ste. 200 San Jose CA 95117 (408) 557-8579 She also has a website
Highly recommend you connect with Quest - they are experts and wonderful - they have counseling, camps and after-school programs. They are experts at teaching social cues too. www.questcamps.com anon
After the recent posts about Asperger's Syndrome, I am wondering: could this child have it? Starting at age 4, she would insist on the exact fraction for her age, e.g. ''I'm not 4 1/2; I'm 4 178/365!'' She has always been very shy and refused to play with other children in preschool, preferring to hide behind her mother's or other adult's leg. She prefers to read or write stories by herself. She learned to read and write at age 3 and has been keeping notebooks since then. She numbers every page, and if she makes a mistake on a page or doesn't like a drawing, she makes a big black X on the page, writes ''no page'' and renumbers all the pages. Wondering
Dear Wondering, Your description describes some compulsivity, but not the extreme involvement in different areas that the children with Asperger's Syndrome I have known show. If you have real concerns, take her to a community mental health clinic for a psychological evaluation. Sounds like she is a very sensitive, creative, intelligent creature to me, one worthy of protecting and helping until her sensitive nature can better tolerate this bang-about world! My son (now 25 and married last weekend) was also very shy at age 3, didn't want to interact much, read a lot of books, and was extremely sensitive. I protected him and his sensitivity, allowing him to take his time in detaching from me when going to school (I stayed with him, despite their pleas that I leave--it took him a few days, but he detached from me!). Fortunately he is still sensitive and caring. We tested him and he is very intelligent. He also is dyslexic in a few areas. I'm glad I pampered him a bit when he was young, because despite these challenges he has turned into a wonderful young man who retains his sensitivity, while still being a bit reclusive! Ilene
As both a clinical social worker and a mother of 3, I'd say don't be too worried. Asperger's is very rare, and it affects boys more often than girls. Although some of your daughter's behavior may seem odd to you, some of it may be ''a phase,'' and some may just be her personality. If you are truly concerned, take her to a mental health professional for an assessment. Make sure it's someone with experience with young children. Good luck! kaye
The answer to ''could she have Asperger's Syndrome'' is yes...or no! Having been there, I completely understand and empathize with a desire to get more information about a child from a group of parents who may have experience in a particular area. However, I'm writing because people (like me) who have never seen the child in question have very little to base our replies on. I think the answer is always to check out your concerns with an appropriately trained person who can see the child and begin to make sense- with you- of very complex issues. The best we can all do is to take our concerns seriously (that is to say, not be embarrassed by them) and take steps to get answers. Even then, you may get very different ''answers'' from different professionals. Ultimately, you have to go with the one that makes best sense to you or which evolves over time. Best of luck. - Anon
A friend has just been told that her daughter might have something called Asperger's Syndrome. She wont know until she can be evaluated, and she must wait a very long time for her first appointment to do this. Obviously, my friend is rather stressed about this. She has been trying to learn more about this disorder, but everything she has read (not to mention her Pediatrician's explaination of things) always seems too clinical and difficult to really understand. I was wondering if anybody out there has a child wtih Asperger's Syndrome who can tell us in a parent-to-parent way just what Asperger's is, and how it showed itself in your child? My friend thinks her daughter is just shy, or otherwise awkward around other kids. How can you tell regular shy behavior from Asperger's? When did YOU know something was different about your child?
I appreciate your friend's concern. But to relieve her anxiety, at least for the time being, you might let her know Asperger's is not commonly diagnosed in girls, and it is certainly possible that whoever referred her for the full evaluation is off the mark. As a child psychologist, I have worked with a number of kids who were given preliminary diagnoses (e.g., by pediatricians) that turned out to not be appropriate. Her daughter may still need some help with social skills or language use, but I hope she doesn't worry too much about the particular diagnosis until the evaluation. In the meantime, if she wants more information, there is a lot on the web. One website she might start with is: http://www.udel.edu/bkirby/asperger/. Liz O.
as the mother of a 6 year old asperger girl -I know the experience of feeling that your world is over. that all of the dreams you had for your child would need to be revised. We went through the initial shock, experienced our grief and got on with helping our child get the most out of her existence. tell your friend she must first realize that Austism/Aspergers is a spectrum disorder. two kids with the same diagnosis might have totally different symptoms. our child's voice is not monotone and she does not have ''eye contact'' issues but does have social deficiencies. She currently get's two days a week at Stanford and is making great progress. Get ready to shell out some cash for the services required as most insurance companies will not pay. If you are 89, have a stroke and need speach therapy - insurance will pay but.... if you are 6 and need speach they say it is a developmental thing and until it effects accademics they are not required to cover anything. Ultimately her lack of social skills will effect her academically - we will revisit the insurance issue at that time.
please note there are a lot of new therapies including a system called RDI and we have found out through an alergist that she is allergic to mold, citric acid and eggs. when ingested we notice obvious behavioir issues. so keep that in mind. your friend might want to have her child tested for allergies.
Please tell your friend that the child she loves still exists, nothing will change that feeling.
we adore our AS girl and would not change one cell of her even with her quirks. I look at it like this. getting this diagnosis has given us an explanatiion and plan for her behavior. this is not something that she will die from but live with. and i can live with that
i will happy to talk to you or your friend - anytime as i know upon first learning about AS - we, as a family were devasted but now we see the light and it is a 6 year old named Claire who lives in our house!!
mom of a wonderful and inspiring Aspergers child. elaine
When our son was diagnosed with PDD-n.o.s. (Pervasive developmental Disorder- not otherwise specified) which is an autistic spectrum disorder that shares some of the traits of autism and Asperger's, we found an enormous amount of information on the internet; just do a Google search on Asperger's. In the course of things we also have found a number of good books on this and related subjects. One is ''Asperger Syndrome & Your Child: A Parent's Guide'' by Michael Powers and Janet Poland (ISBN 0-06-620943-9). Since the line between Asperger's and PDD is very fuzzy, I will also recommend another book, (Pervasive Developmental Disorders: Finding a Diagnosis and Getting Help) by Mitzi Waltz (ISBN 1-56592-530-0). Regarding your question about the difference between shyness and Asperger's, the impression that I have from all of the sources (books, internet, & Psych professionals)is that there is a spectrum from normal to advanced forms of all of these neuropyschological disorders. Some shyness is truly just shyness inother cases it has a neurological component and is an expression of Asperger's or other condition. If your friend has health care through Kaiser, I recommend the child psychiatry group at Oakland. They have some wonderful professionals there who will also help with getting appropriate educational assistance for the child. Patrick
Asperger's is characterized by flat, monotone affect, limited (or none) ability to read social cues, attaching to adults more readily than peers, often obsessional interest in a particular area--e.g. butterflies, trains, limited eye contact, math/science giftedness, largely; more occurent in boys. There are wonderful social skills groups available that work with kids/adults with Asperger's. There is a boy in my daughter's grade with Asperger's who has made vast strides socially since he has joined a social skills group. I wish your friend and daughter good luck. Seen a lot of it
What I would take from the pediatrician's referral, at this point, is that there are reasons to be concerned about the child's development and that it is important to obtain a thorough assessement. The pediatrician may or may not be correct about the specific diagnosis that was suggested. There are so many subtleties and the state of the art is changing so rapidly, that pediatricians, psychologists, and teachers can easily guess wrong. The wait for an evaluation can be very long, but it will be worth it in the end. Our child has a diagnosis of PDD-NOS (pervasive developmental disorder-not otherwise specified) and has a lot in common with children with Asperger's and another syndrome, NLD. Here are two books that explain things in the parent-to-parent way you mentioned. Both are first-person accounts by a parent; they describe the situations leading to their child's diagnosis and how they used the diagnosis to support the child's development. Rondalyn Varney Whitney, who wrote Bridging the Gap: Raising a Child with a Nonverbal Learning Disorder (ISBN 0399527559), is an occupational therapist who writes from both a personal and professional perspective. The other book is by Echo Fling, Eating an Artichoke: A Mother's Perspective on Asperger Syndrome (ISBN 1853027111). One book about social skills is Helping the Child Who Doesn't Fit in by Stephen Nowicki and Marshall P. Duke (ISBN 1561450251). It's clear and practical, not too clinical.
My advice is to continue to talking to different people with different expertise. My 10 year old has had a couple of ''diagnoses'' including ODD, ADD, possible lead-poisoning, etc. Each time we got a new one, we were relieved that there was a ''thing'' to work on and we felt like better parents. But what I have found over a 6 year journey is that I concentrate less on the ''diagnosis'' and more on helping my daughter with social skills and helping her in finding those things at which she excels. She is becoming more and more excited about life and about becoming a young woman who ''doesn't fit in any one box''. Good luck! Inga
Our wonderful 8-yr-old son has Asperger's syndrome, and after about three years of assessments and treatment attempts, we have found a way to really help him that is working. I would be glad to offer you info: about reading, local professionals, and/or about the approach we're using. There's alot of misguided info out there - I guess you have to pick and choose what feels the most grounded and relevant to your child yourself.
First of all, Tony Attwood has written a pretty clear description of Asperger's, called Asperger's Syndrome. If you can't get it through the usual channels, let me know and I'll give you ordering info. Besides that, you (and others) are welcome to e-mail me about particular questions you have. This is scary stuff, but there is REAL HOPE, REAL POSSIBILITIES for these kids to get help and to develop further and live fuller lives. mwk
After seeing a lot of discussion about Asperger's challenges, we are pleased to announce our plans to open The Keystone School, a middle school designed to focus on the academic and social learning styles of those diagnosed with neurocognitive disorders such as Asperger's and Non-Verbal Learning Disability. We have begun work in anticipation of opening in Fall 2003. If you know of anyone who would be interested in attending The Keystone School or learning more about it, please contact us at (510) 466-5405. there will be an OPEN HOUSE for parents and professionals on Thursday, Feb. 13th. Gretchen Loughran
I am just finishing a book called ''A Mind at a Time'' by Mel Levine, M.D. He is a pediatrician specializing in neurodevelopment of children. He descibes his view of the various systems, inputs, outputs, etc. involved in the neurodevelopment of children. He does not like to 'lump' developmental problems into diagnoses, but, rather is a 'splitter'. He divides the mind into eight systems, including social; each system has multiple divisions; etc. It's written for parents and emphasizes each child's uniqueness. I have found it helpful and think you, and most parents, would too. ellen
My sister's oldest child, who will be four in April, has been exhibiting patterning behavior, or repetitive activities, since she was a toddler. In her case, this has included flapping her arms vigorously, running back and forth, or getting stuck on a thought that she won't drop. The running and flapping usually occurs when when she is excited, switching to a new activity or relating a story or singing. She is a bright child, ahead of her peers in language and number skills, and she has a good sense of humor. Over the years, they have consulted with their pediatrician, who has taken a wait and see approach, at least until her language skills are more developed (age 4? age 5?). However, my sister's mother-in-law, who teaches at a school where they are tuned in to developmental problems, does not agree with the doctor, and has been sending my sister information on Asperger's Syndrome, which apparently is something like a mild form of autism. Also, my sister says more and more adults are commenting on the behavior, including her daughter's pre-school teacher, who says that at age three the children are pretty oblivious to what might be considered odd behavior in other children, but by age 4 they start noticing. My sister is worried about what effect this will have on their daughter. To date, they have tried not to make an issue of the flapping, etc., because they don't want to complicate things for their daughter by making her self-conscious. Has anyone had experience with this? Advice?
I would urge your sister strongly to have her child evaluated by a good child psychologist. Early diagnosis and treatment is tremendously important to a child with neurological, psychiatric or psychological problems. I wouldn't dream of 'diagnosing' from this distance, even if I were competent to do so. But my personal experience with such problems leads me to encourage your sister to be aggressive in pursuing an evaluation. The secondary effects of an untreated disablity or other problem can be very damaging to the child and to the family, sometimes even more so than the primary problem. (Two good, short and very readable books on this are The Social Side of Learning Disabilities and Learning Disabilities, A Family Affair, both by Betty Osman.)
The point I want to stress is that a parent really is in a better position to sense that a problem *may* exist than anyone else. We can't diagnose our children but we spend so much time with them that we have a much fuller picture of their behavior than any professional can hope to have. Thus, a parent's persistent feeling that there may be a problem, or that their child is off somehow, should be taken seriously. Parents who are concerned about behaviors like you describe should have their child checked out, especially when the issue or behavior has persisted for a year or more and they are getting the kind of feedbackfrom others that you describe.
I also want to caution against the impulse to defer to the pediatrician who says wait and see later. There are a few pediatricians who specialize in neuropsychiatric evaluation and the like, but by and large this is simply not a part of the mainstream pediatrician's active skill-set. I would not refrain from pursuing a concern on the basis of a pediatrician's wait and see advice, although I would take very seriously a positive recommendation for further testing from that source.
Last, I want to emphasize that the decision to get an evaluation is not a big deal. Competently handled it will not trouble the child or make her self-conscious. While I wouldn't embark on (or advocate) a course of *treatment* without a professional recommendation that I trusted, some parental aggressiveness about testing and diagnosis is not a bad thing. We have to be advocates for our little children. The worst that happens is your sister would pay for an hour or two of a psychologist's time and then be able to rest easy whatever the resulting advice.
Evaluation & Diagnosis
My son needs to have an updated psychological assessment done for his Asperger's and AdHD diagnoses. The last one was done when he was 8; he is now 20 and are considering applying for SSI based on feedback from his current speech therapist and others. Recommended neuropsychologists have fees of upwards of $5,000, which is too much for me. When it was done for him at age 8, it was by a psychologist with special training and interest in Asperger's (but in the city in OH from which we moved). It seems there should be a similar middle-of-the-road solution here. Other recommendations are for Regional Center or other non-profit to do the assessment, but it seems to me that given the declination of services rate from some of these organizations, that would not be the best solution. Thanks.
I recommend you speak with Dr. Kristin Gross, PhD in Berkeley on Solano Ave. (510)530-1676 East Bay Mom
Here are some resources you could explore.
- UC Psychology Clinic: (510) 642-2055, http://psychology.berkeley.edu/clinic/psychology-clinic. Sliding scale assessments; waits can be long.
- Wright Institute Assessment Center, 510-841-9230, x159, Sumana Kaipa, Co-Director. Sliding scale assessments.
- Clearwater Counseling & Assessment, 510.596.8137, sliding scale available.
- Mary Cunningham at Raskob Learning Institute (510) 436-1275.
A day in Davis:
- Dr. Jennifer Grimes, Davis, CA. Significantly lower cost assessments, as she conducts them in one day in Davis. 530.758.3114, 707.435.01467, jengrimes [at] jennifergrimes.com anon
Hi, I believe my son has Asperger's Syndrome, but he has never been diagnosed. Does anyone know what kind of doctor does testing for Asperger's Syndrome? Thank You anon
If you suspect your son has Asperger's, I recommend a comprehensive assessment by a neuropsychologist. Christine Duis, PhD at 925-256-4400 and Caroline Johnson, PhD at 510-843-2005 are both neuropsychologist and highly respected in the field. Nancy C.
Our family has recently changed our medical coverage to Kaiser, Oakland, and we are looking for someone there--a psychiatrist, developmental pediatrician, or other, to evaluate our 10 year old son for Asperger's syndrome, and hopefully, to begin a treatment plan. He has many of the classic symptoms and we're hoping an evaluation will start him on the help he needs. anon
My son was diagnosed by Dr. Russell Rieff at SF Kaiser, but that was 11 years ago and their procedure may be different now. Also, unless things have changed, Kaiser will diagnose but not provide a treatment plan. If you plan to receive special education services through your school district, they may require an evaluation by their own staff. anon
You might try one of the neurologists such as Dr. Jean Hayward or developmental pediatrician Dr. Mangravite. Both out of Oakland. However, I would suggest self- referring to the Regional Center of the East Bay. 383-1200 and ask to have your child assessed. Regional Center provides services for the Developmentally delayed population. They can assess him and it is no cost to you. However, the assessment period does take awhile. Children's Hospital can also diagnose. Try Dr. Watchel or any of the other developmental pediatricians. Good luck. (PS: My preference would be to go to a private developmental pediatrician or Regional Center). Go to the Regional Center Website - rceb.org for more information about their services anonymous
I would recommend checking out Autism Treatment Center of America and the Son-Rise program, regardless of what pediatrician you choose. ABA is the therapy of choice lately, but its effects (in my opinion) aren't often maintained for very long, and the program can be abrasive. Son-Rise, on the other hand, is completely catered to your child's needs, and incorporates the parents as the child's most important resources. Best of luck. Website:http://www.autismtreatmentcenter.org/ - Seen Son-Rise work!
I've read the previous recommendations on the website, but they are several years old and we're hoping for an update. We're looking for a really excellent neuropsychologist to do testing for possible Asperger's in our 4 y.o. Prefer Contra Costa but will go as far as SF. Hoping to find someone who gives concrete and constructive ideas for assisting the child and family with coping and maximizing quality of life. Preferably someone gentle and good with small children. Thanks in advance. anon
M. Alex Peterson at Children's Hospital has a great reputation. 428-3000. anon
We used Clare Ames-Klein in Lafayette and found her very thorough and helpful. My daughter looked forward to her visits with her which was great. Barbara
I recommend the Children's Hospital Oakland Neuropsych Assessment Service, where my son was tested (another diagnosis). Kristin Gross did the eval and was excellent. I also know the work of Alex Peterson and Corina Grandison, and would recommend them highly as well. Anon
Treatment & Resources
My four year old child was recently diagnosed with Asperger Syndrome. He currently receives weekly one on one sessions with a child therapist as well as weekly structured play sessions. We are considering additional speech and OT therapy.
I heard that intense ABA therapy works well for moderate to severely autistic children. However I want to hear from parents and professional who works with high functioning/Asperger kids. How beneficial is ABA therapy for improving social skills in Asperger kids?
If it is beneficial, what's the typical number of hours per week of therapy to really make an impact? (I've heard of moderately autistic kids receiving 25-40 hours/week). I know every child is different as is mine. Would really appreciate your honest feedback. Thank you. Chris
ABA can be a tricky thing with a child who is mildly on the spectrum because it can be very rigid and repetitive. However, ABA is not your only option and there are several other methods that would put more emphasis on social skills. (Floortime is the only one I can think of right now). Whichever way you go, though, the success of the program is going to depend on the skills of the service provider. You can learn to do it yourself or you can hire an agency to do it for you. My son has high functioning autism, not Aspergers, and we used BIA (www.bia4autism.org) They are ABA-based but are very flexible with their approach; they called it ''the whatever works method,'' and the flexibility of their program was hugely successful for my child. Our program started when my son was 3 1/2 and ended 2 years later when he started Kindergarten. It was 15 hours/week and there was never a break; no vacations, no days off more than one or two in a row. He was almost completely nonverbal when they started and the results were instantaneous. Hope that helps! Feel free to contact me directly if you'd like more info. Jill H
Instead of ABA, I would look at RDI (Relationship Development Intervention), which mirrors typical child development. You can get more info at RdiConnect.com Are you under the care of a developmental pediatrician or a psychologist who can give you guidance based on your child's individual needs? It's good to have a ''big picture'' health provider who can point you in the right direction. I'm planning on taking my son to Susan Johnson, a developmental ped in Colfax (youandyourchildshealth.org). We currently see a well-respected developmental ped, but I need a new perspective. Hope this helps!
Does anyone have good resources for a 5 year old child with Asperger's Syndrome? After difficult baby, toddler and pre-school years, we finally have found out the reason our son doesn't respond to regular parenting strategies like other kids do. We've gotten a couple of great books but are looking for more books about parenting strategies and general approaches we can take with a 5 year old. We also are looking for resources about how to balance the attention and care we give with raising our two younger children. Lastly, in your experience, are AS kids usually the product of an AS parent? AS Mama
My son has an Asperger's diagnosis. I have found social/pragmatic language classes (i.e. social skills classes/play groups) extremely helpful. We started when he was five and was not interacting much with other kids, and it made a huge difference. Two really good places are Communication Works http://www.cwtherapy.com/ in Oakland near Keller Ave, and Speech Pathology Group is another http://www.speechpathologygroup.com/ - they have one location in Berkeley at Ashby and Telegraph and another out in Walnut Creek. (Although they call these language groups, my son does not have any language or speech deficit - social language refers to both the spoken and the unspoken language of social interaction. I should note as well that these are pretty expensive.) We have recently been looking into therapists for our son as well to deal with anxiety type issues. I've learned that the therapists who work with Asperger's kids do a lot of coaching with the parents as well - some of them even focus more on the parent coaching side than the kids. Two names are Peter August (510) 220-5152 and Ellen Singer 525-1975. Ellen's focus is very much on parent coaching - my impression is that she has what you might call a behaviorist approach. Peter's focus seems to be on understanding the underlying causes of the behaviors. These impressions are based on interviews with them but not having worked with them yet. There is an Asperger's parents support group as well that meets monthly at Communication Works; much of the discussion there is centered around getting services from the public schools . Best wishes to you. Anon
We have a 13 yr old Asperger's son who was diagnosed at 5. We relied heavily on the advise of the medical professionals we worked with (developmental pediatrician, speech pathologist, psychologist) to guide us in our parenting. It's also really important to connect with parents of kids on the Autism spectrum. There are various support groups and resources at http://www.aspergersresource.org.
In our case, there's a definite genetic propensity for Autism. My dad and his siblings are all undiagnosed but very much on the Autism spectrum. Luckily, most of them developed the skills they needed to be happy and productive.
Hope this helps! Parent of an Aspie son
My highschooler has Asperger's and is in need of therapy (finally agreed to go) as well as educational therapy/help. Linda Lawton and Anastasia Kim were recommended in past posts but I can not locate either one. I would greatly appreciate any recommendations for therapists. Thank you all... mom
Anastasia Kim is on the faculty at the Wright Institute in Berkeley. I believe she also worked at the Orion Academy in Orinda, which serves kids with Aspergers' and autistic spectrum disorders. I am not sure if she does therapy. Ilene
Hi, Anastasia Kim can be reached through the Wright Institute in Berkeley at 510.841.9230 x 139, M-F, 9-5. Her specialization is working with children with Asperger's and she is currently available for new clients. Good luck with your search.
Contact Communication Works -- 510-639-2929. We had a great experience in a group for our teen. Recommending Communication Works
Try checking out Nancy Chin at www.stepbystep4success.com. She tutors students needing educational/organization needs. JC
Try Communication Works in Oakland. Their website is www.cwtherapy.com My teenage daughter went there for social groups, which were wonderful, and they also were able to recommend counselors to work with her seperately. Good luck!! Aspie Mom
For your teen, I highly recommend Communication Works Speech & Language Pathologists (cwtherapy.com). My HFA teen was reluctant at first, too..his uncertainty was eased by CW professionals' sensitive manner and expertise. They have comprehensive understanding & experience w/serving spectrum youth. My son attends a small group/dyad at CW & is making strides-in confidence & communication-thanks to their resourcefulness. Good luck! lize
Someone I love dearly has a child who has an Asperger's Syndrome diagnosis. The boy is extremely high-functioning and characterized as a ''prodigy, a genius'' in the medical and scholastic literature on him (I know, I've seen it). But he is suffering and has serious social skills issues despite having worked with a local therapist over time. Looking for someone who is an expert in the field of Asperger's Syndrome, preferably in Berkeley or nearby. Thanks for assistance.
I would highly recommend Dr. Annette Blackman, a psychologist who works with children and young adults on the autism spectrum, especially those with Asperger's Syndrome. She is excellent! 1-925-323-8814.
You or your friend should give Nancy Chin at Step By Step a call. Nancy has extensive experience working with gifted children with learning disabilities, especially those on the autistic spectrum. Her contact # is 510-384-1909. Stu S
Can anyone recommend a therapist or psychiatrist in the Berkeley area who is skilled in talk therapy for an older teen with Asperger's or Asperger-like challenges? Teen's Mom
I have just stumbled upon the probable Aspergers diagnosis for my 19 year old. I too am trying to find any local resources- support groups for families, programs for young adults. Please let me know if you have any leads. I will also be happy to share a possible solid lead re therapists. Please email me. Thank you and best wishes.
I recommend that you contact Dr. Fortunee Kayra-Stuart as a possible therapist for your teen age son who has Asperger's. She is highly experienced with working with teens on the autistic spectrum, and formerly served as chief psychologist at Children's Hospital. She can be reached at 510.526.9506 Kathy Sinsheimer, MFT
Anatasia Kim is an outstanding psychotherapist who has worked with many young people with Aspergers. She worked at the Orion Academy with students. She now has a practice at the Wright Institute in Berkeley. My son has had real success in working with Dr. Kim. Patti
My 5 year old son who is a kindergartener in the Oakland School District just got diagnosed with Asperger's Disorder. The pscyhologist explained that the school is required by law to provide an aide, ''pragmatic speech'' through the speech therapy dept, ''group social skills group'' and occupational therapy. Has anyone else there been through the process of getting these resources for their Asperger's child in the Oakland school district??? Help! Thanks in advance!
I suggest you join the Special Needs Network at Yahoo groups: http://groups.yahoo.com/group/specialneedsnetwork/ They have members who are dealing with these issues and can offer you support and advice. I don't have any information about the Oakland School District, but I can tell you that my 16-year old with Asperger's is now full-time at Alameda High and doing very well. We will be visiting 4-year colleges very soon and planning his future education. Nancy
The school district is not required to specifically give your child things like ''pragmatic speech'' or an aide. They are required to provide your child with a free and appropriate education in the least restrictive environment, according to the IDEA. What that looks like is determined differently for each child. If you haven't done so already, the first thing you need to do is have your child assessed by the school district--they are required to do this free of charge. I'd make sure you get a psych eval, a sensory integration evaluation from an occupational therapist, a speech eval and an educational eval so you have a full picture. Once that's done, if the district agrees with the diagnosis, you will get an IEP--an Individualized Education Plan, that will be the contract that guides what services and accomodations your child gets in public school. Children with Aspergers usually do need pragmatic speech and/or social skills, but the district may not offer them-- you may have to ask for them and argue for them. Same goes for all other services--most children on the autistic spectrum have sensory issues and need occupational therapy, but again, the district may or may not offer it. Remember, they are trying to keep their costs down, so they're not going to leap to offer you services. You need to educate yourself about your child's needs and then ask for what you think he needs. In this sense, it is helpful to have a private psychologist to work with, someone who doesn't have a vested interest in keeping services to a minimum, to help guide you about services. There are a number of websites that can help you too--one of the best is tacanow.org. TACA is Talk About Curing Autism and has any number of resources for navigating the world you've entered. It is particularly focused in California. Finally, getting an aide is one of the hardest things to accomplish in public school, so I wouldn't count on it. And, speaking from experience, I can tell you that there are just as many cons to an aide as pros. If your child can function without one it is really better not to have one. At any rate, you have much to figure out and learn, but I promise you that there are many other parents out there ready to help you, and children with Aspergers are challenging and frustrating, and also an amazing blessing. Susan
We are looking for a therapist for our 11 year old son. He would like to see a man if possible, but is also open to seeing a woman. Would like someone warm and caring and insightful, who is familiar with Asperger's-like qualities and issues (social issues, anxiety, trouble with transition). Is anyone familiar with Dr. Richard Bloom, Jonathan Gross, John Sprinson? Thanks! Any referrals are greatly appreciated anon
We had a child see John Sprinson for testing and evaluation and for play therapy. He is warm, thoughtful, honest, and always calm and respectful. However, I cannot recommend his strongly psychodynamic approach for a child with Asperger-like issues. His initial evaluation missed the mark. While it presents the same raw data that later led a neuropsychologist to a helpful and accurate autism spectrum diagnosis, Dr. Sprinson interpreted the child's deficits in social understanding and expressive language as an emotionally-based ''reluctance'' to engage with others. We have a child with issues about clothing and food that improved later when we learned about sensory integration, but Dr. Sprinson saw control issues and power struggles and mostly wanted to know how my partner and I reacted when our child refused to eat. Other behaviors, which he saw rooted in control issues, were not effectively addressed in therapy with him , but they improved later after we understood them as a reaction to anxiety. I know nothing about the other therapists you mentioned -- good luck with your search anonymous
I can highly recommend John Sprinson. He is very caring and pleasant and very smart. I believe he does see many kids with the kind of issues you describe. He is very down-to-earth, doesn't engage in a lot of psycho-babble, and reallly saw our child as an individual, with strengths and challenges, and not just as a ''diagnosis.'' He's been doing this forever, and I felt him to be a really wonderful calming presence for our child, and for my husband and me anon
Questions about Adults
My husband's behavior seems to be explained by AS. He's not diagnosed not likely interested in a diagnosis-which he thinks is a way to point him out as ''flawed.'' But I need coping strategies if not marital counseling. I don't think I can push for a diagnosis, but could back him into it gently with the right professional. He doesn't outwardly appear unusual, and his case may be mild, but I've been reading up on AS, finding him well-described in most of the books, and my reactions well described. He's not too physically awkward, but avoids eye contact, admits a lack of empathy (w/no interest in it, even in my or our child's issues). Other haracteristics that fit include tantrums if his plans can't work out his way, stilted or lack of communications, rigid thinking, and huge aversion to change, conversation, and anything w emotional contact or communication. I've been lonely forever. I'm trying to make the best of the bright side (e.g., emotion-free tasks don't usually bother him, and I can make plans w/ our child w/o him since he doens't feel like he's missing out w/o us). But I suffer a lack of intimacy & emotional connection-which may be a permanent-which also affects our sex life. I'm on my own when I'm down or ill. I can't talk to him about anything w/ emotional content. It's not much of a relationship left. We do have fun together sometimes, but I cannot make any progress on intimacy or emotional understanding. His view is that he's made all the changes, and he doesn't perceive me as suffering so much as demanding. Which leaves a void of nothing between us--from my perspective, anyway. I'm pretty sure he just sees me as this roller-coaster of confusing emotions and demands, and he can't understand why I want him to respond to questions and statements (''Was a response required?'' is a response I can barely stand to hear anymore). When he is particularly self-absorbed and I get aggravated, the only solution for me now is to void him my mind until I can let it go. Meanwhile, he doesn't think he is callous, and the lack of family feeling means nothing to him (although any attempt at change or conversation is viewed as criticism). He may see me as cold for the few days it takes me to recover. But each incident erodes my hope. It's also not as simple as just leaving him. Not best for our child (who equally adores & detests him)& not necessarily best for me. I want to be compassionate and careful about my options, but clear-sighted. Unfortunately, communications and emotional connection are fundamental to me. Divorce is not an immediate option (I would prefer not to go that route at any rate). Anybdody in a similar boat?
Asperger's Syndrome is a subject I know something about: Our 24-year old son, a senior at CSU East Bay and an amazing success in life, is ''on the autism spectrum''. He attended Orion Academy, a college-prep high school for A.S. youth, where I came to know dozens of fine young people with diagnoses of Asperger's, NLD, PDD-NOS, and other categories.
Rumor has it that the doctors who are re-writing the DSM-V will be throwing out all those sub- categories and just calling it ''autism''. If this is the case, the unintended consequences will cause havoc in the health insurance and public benefits sectors for years to come.
Based on your description of your husband, I very seriously doubt that he could be diagnosed with Asperger's Syndrome. He's just too highly functioning. That said, there is a very broad spectrum of normal / neurotypical people who have some Aspie traits. I, myself, when confronted with drama queen - type people, react by channeling Mr. Spock from Star Trek. It never fails to drive them up the wall! Your husband sounds like a member in good standing of the Silicon Valley crowd of engineers and accountants. (Full disclosure -- my degree is electrical engineering,)
1. Appreciate the good aspects of Aspie-like guys. They are usually loyal and reliable. A female co-worker of my husband had a crush on him and was coming on to him for years, and he never had a clue!
2. Train your husband to do the things you need to feel loved and appreciated. Give him a short list. Yes - putting it in writing may help him absorb the information. For example: a) ''When you come home from work, it will make me very happy if you will give me a good hug and kiss.'' b) ''I expect you to give me a present on my birthday and Mothers' Day. If you don't, I will be upset.''
One of the earliest and best guidebooks for parents of NLD children is titled; _I Shouldn't Have to Tell You That!_
People on the spectrum genuinely don't know what society expects from them. You have to tell them with the ''heart of a teacher''. They often will appreciate being clued in, if it is done with kindness. Snarkiness will defeat your purpose.
Finally, there is an online Asperger's test: http://www.aspergerstestsite.com/ Amelia, not really Ms. Spock
The interpersonal dynamic you are describing is exactly the one I have with my child's father. (And, as far as I've been able to ascertain, the dynamic he has had with his other partners as well.) Important exceptions to the overall similarity (which nonetheless highlight the parallels between his general personality and your husband's) are that my child's father has not bonded with our young child at all, despite having numerous opportunities to do so, and despite the fact that he has maintained a (consistent, though non-conventional) relationship with me. He is not at all antagonistic or cruel to our child; just utterly disinterested and indifferent. I've known this man for over ten years and been in a relationship with him for five, so I've known him long enough, and through enough life changes, to be sure that this is just how he's ''wired,'' and that his behaviors are not specific to his interactions with me. One concept you might want to look into, and which I feel fits my child's father better than an AS or other autism spectrum diagnosis (though I still debate myself about this, and of course he is not interested in seeing a psych professional), is Schizoid Personality Disorder (DSM IV definition) or ''the schizoid position,'' in psychoanalytic terminology. (Note that there is much overlap between these ideas, but they are not identical.) However, diagnostic constructs are fluid, and having participated in an online community of schizoid individuals and their partners for over a year now, I'll tell you that anecdotally, there appears to be A LOT of crossover between varying AS/high-functioning autism diagnoses and schizoid personality. As far as coping strategies for you, I'll tell you that the consensus seems to be that schizoid individuals are *extremely* unlikely to change. In my case, I'm fairly solitary by nature, and have learned to be even more comfortable with emotional distance, since my child's father is not going to change and I don't want to end the relationship yet. The major difference that ''discovering'' SPD has made in my thinking is that I no longer feel personally insulted by his inexpressiveness and lack of consideration for others. (Not a very heartwarming coping strategy, I know.) However, if Asperger Syndrome is a better fit for your husband, I've both witnessed and read about AS individuals making major progress and being fairly motivated to learn behaviors that make life easier for them and their families. The Journal of Best Practices might be a good read. Hopefully that will give you more solutions than I've been able to. You're not alone but I don't have many answers; only ideas about framing the question. anonymous
I divorced my first husband because of a lack of emotional connection and he quite was ''normal'', not Aspergers. I was young and didn't have kids so it was easier. He was a nice guy but kept things on a superficial level. It feels very lonely, empty if you can't connect on a deep level. It was amazing when I finally found someone who I connected with on an emotional and spiritual level. He wrote me poetry, talked about his insecurities and was interested in mine, wanted to know how I was feeling. It's worth finding. If you truly feel you can't get a divorce now, then maybe you should discuss having an open relationship. This is Berkeley after all. I have a friend who has a husband exactly like yours and she didn't want to divorce either. She now has a boyfriend and is happy. Since her husband isn't too emotional, he could handle an open relationship without the jealousy many partners might have. Let your husband know that your emotional needs aren't being met so you want to get them met elsewhere. -you never know until you ask
I feel your pain! I read your post with interest as I feel I am in a similar situation. My significant other also gives the ''was a response required?'' non-response e.g. when I talk about feeling sad about a friend's illness, he does not empathically feel anything, he just is blank, until I hint that he could say something, and he will ask with puzzlement ''was I supposed to say something?'' Or ''tell me what I am supposed to say''. Any emotional topic is uninteresting to him. He says a person can never know another person's situation. When I happily describe something to him, he responds with a fact or says he is uninterested in the topic. For example, when I proudly said my friend was the smartest student in French, he asked ''how can you prove that? Until you prove it, I don't believe that''. He says conversation is a means of exchanging information. I get frustrated as I would like him to follow my train of thought or empathize but he just talks about what's on his mind. He has trouble thinking about the same thing at the same time another person is; it is impossible for him to take on another person's perspective. He does not socialize and our social life would be nonexistent if I did not make an effort to see my friends. In group gatherings, he spaces out and is uncomfortable despite my attempts to facilitate conversation between him and others. He likes routine e.g. he insisted on only seeing me certain days and times of the week for years and he is totally thrown off by a change in plans, becoming confused and angry. Our difficulties increased over time and as our social life stagnated due to his antisocial ways. Otherwise, he is a wonderful, thoughtful, conscientious, hard-working, and loving partner and we have lots of fun together doing activities around shared interests. I do not think his lack of social and communication skills is severe enough for an Asperger's diagnosis but it is annoying and he is not like any other man I have been with! I deal with him by teaching him when he is being inappropriate and telling him point blank what I need, otherwise he would not intuitively know these things. But sometimes I am tired of teaching and coping, and I end up yelling or crying because I do not get my needs met and am not heard and understood. Good luck and I hope that in your case, getting an experienced professional to mediate would decrease both of your frustrations and improve your relationship. Anonymous
I'm sorry, I had to laugh when I read your post. From what you describe, it seems you have a pretty 'normal' husband, the Aspergers thing I found hilarious for some reason. No offense, really, I can totally hear the pain in your post... and that is definitely not funny I'm also a decade into my marriage and have struggled with some of the same dynamic you describe. I also have two very close friends who are in or have been in a similar boat. The first thing I would do is really look closely at yourself. How are you contributing to the negative dynamic with your husband? What issues in your past are being triggered? When a relationship becomes as disconnected as you describe, it is not just one person's fault. There's a dialog happening. I highly recommend that you seek therapy with a therapist specializing in EFT (emotionally focused therapy). I also highly recommend you check out the book ''Hold Me Tight''. It did WONDERS in helping my husband and I recognize our own patterns that shoved us into a downward spiral. More than anything, it returned the sense of hope I had lost in my relationship. Things can get better (but you won't be going anywhere if you simply blame your husband for what's happening). It's no ones' fault, it sounds like you both have pain. Check out the book, it's good, it will help... and stop reading about aspergers, lol Good luck!! Anon (had to laugh)
To the Mindful Poster that responded to ''Marriage on the Rocks'', or ''Marriage -- When to Give Up'', I want to give you a HUGE THANK YOU from the bottom of my heart!
I checked out the Podcast link you suggested regarding a husband and wife that suddenly discover that the husband suffers from Asperger's Syndrome. Like the wife on the Podcast, I have been at my wits end and have felt so completely alone and ready to throw in the towel. My husband lacks empathy, has very little or no compassion. He is awkward in social situations. He often insults people without knowing it and then wonders why people are upset. OMG. This Podcast and the quiz were eye opening on so many levels. I now no longer hate my spouse.he just has Asperger's!
So here's the deal. What now? I am reaching out to you, wonderful BPN Community to tell me what to do next. Even though my husband took the quiz on the link from the Podcast (and was almost 100% Aspberger's) we clearly feel he needs to get tested by a professional. So where do we go from here? Check in with our Primary Doc? Sidestep that and head straight to a Therapist that specializes in Asperger's? My guess is that my husband has a lot of work to do on his own, but yet I feel like we have work to do as a couple as well. Not to mention, I feel like I would love to explore a support group of mates that have Spouse's with this Syndrome and the trials and tribulations we deal with on a day-to-day basis. It's no picnic I assure you and I have been flirting with the idea of divorce for a very long time. Net net; we need help.
Luckily my husband is on-board with treatment. Like the Podcast husband, he is almost relieved at the diagnosis. He has been feeling alone and mis- understood his entire life. Thank you again BPN Community. You rock.
That was me who posted about the podcast on Aspberger's (actually there were two of us). Thank you for thanking me. I am thrilled my This American Life addiction has been good for someone. Good luck with the next step. It seems like you guys have a lot of figure out, but knowing what you know about him now will really help. Mariana
http://www.aascend.org/ This organization will offer great support to both you and your husband. Social skills can be learned! Aascend Fan
I really need to find a support group for those of us in committed relationships with adults with Aspergers. Please share your suggestions with me! anonymous
I asked a friend who's a spouse of a person with Aspergers, and here's what she wrote back: The person can write to aspiepartners [at] aol.com to find out when the next meeting will be. So far, the first and last one I attended was in May, and they have not held another for the entire summer. As far as I can tell, it is just a handful of people (all women), who are supposed to meet once a month, but so far have met once in the last four. It seems to currently be the responsibility of one person from the South Bay, and the meetings tend to be held in South San Francisco. A friend
My three year old has recently been diagnosed with high- functioning Autism. As I was reading up on challenges he might face as an adult, I looked up ''adult aspergers symptoms'' and almost fell over when it described my husband to a tee. The realization was a bit much to cope with at the time, but now that my head has stopped spinning about my son and his supports are in place, it feels like time to explore what might be Aspergers in my husband. But how to go about doing this for an adult? Who is the qualified person to see? Has anyone themselves or a spouse gotten a later-in-life diagnosis? Was it helpful? Also, do adult evals and services cost a bundle, and is it ever covered by insurance? (Our resources are stretched.)
When I realized that my husband probably has Aspergers, so many of his qualities, quirks and personal challenges -- along with some issues we have in our marriage suddenly made sense. His father and his family's dynamic suddenly made more sense too. (I think his dad definitely has Aspergers.) My husband is struggling right now at work with some organizational issues and he becomes obsessed with the details when it's not what's always required. Are there people who offer career/personal coaching or advice or therapy to adults on the spectrum? I also think he's struggling with bottled up anxiety and I don't know how to help him.
There may be a lot of healing and understanding that could happen in his own family as a result of uncovering and sharing this, but is that opening a can of worms (aka unintended consequences)?
I'd appreciate any insight, resources, groups, stories. I'm in very uncharted waters right now and I want to help my guys be happy, fulfilled and connected. -Anon
Our bright, quirky 15 yo. son was dxd with Aspergers at 8 yo. by a wonderful developemental psychiatrist in Los Altos who helped us place the right supports in place (with great results). Please check out www.teachsocial.com, its an incredible wealth of information for families of kids & adults with developmental disorders.The social thinking guru behind it is Michelle Garcia Winner, she has a ton of resources- books, a blog, workshops are amazing! It's tough living with our guy but he makes life so interesting..to say the least! Good luck BTDT AS Mom
A friend of mine knows the people who put this site together and she says they are amazing people. Hope this is helpful. http://www.asperger-marriage.info/ Lisa in Oakland
My brother was diagnosed with Asperger's as an adult, and it was an Aha moment when my mom told me. My mom and I speculated that my dad has Asperger's too, though he has not been diagnosed. Well of course! So much makes sense with a name. But that is so for my mom and me--not for my brother.
Note that I said when my mom told me, not my brother. He still will not talk about it, feeling deep shame (he's always had a terrible time with shame). He and I both had learning disabilities as kids and had to go to the tutor together. So mow I connect with him through that shared experience, not through his diagnosis.
Check out the book, Neurodiversity, by Thomas Armstrong. Very interesting reading. I gave my bro the magazine synopsis, and try to talk to him about the value of some of his peculiarities--but without pathologizing them at all. But I don't think he'll ever turn around and talk to me about this. It's just not his way. But that's fine with me.
Your husband might well have a very different feeling about it since your son has been diagnosed. And maybe that is a way the two of them can grow as father/son, by working together. But tread carefully, lovingly, and respectfully. Not same boat but same river
My adult brother has just been diagnosed with mild Asperger's Syndrome. This is something I have long suspected. But it is a surprise to him, and what's worse, it's an embarrassment. I would like to help him find some relief and comfort in knowing more about himself, and also advice on how to interact better more mainstream people. I keep thinking that if he was a kid, there'd be playgroups and all kinds of ways to help him overcome his awkward social abilities. I am wondering if anyone out there can help me find books and webesites about how to deal with such a diagnosis as an adult, and good ideas about how to move ahead and live a more integrated life. Thank you. anonomous
Two websites I know about are http://www.wrongplanet.net/ and http://www.asperger.net/index.htm The first is run by people with Asperger's and the second is run by the Autism Asperger Publishing Company. Nancy
asperger's is difficult regardless of the age. as much of a shock it is to your brother, it's good that he was diagnosed. he can better understand why certain things are so very difficult for him (and that it's NOT his fault) and get the help he needs. have you ever read ''born on a blue day'' by daniel tammet? if not, read it and if you like the book have your brother read it. i've read a lot of books on asperger's and found daniel's book very inspiring. good luck nancy
This isn't exactly what you're asking for, but I was really inspired by the autobiography Born on a Blue Day, by a young man with Asberger's, Daniel Tammet. He is also a savant, which is something totally else, so it may not be interesting in that respect to your brother. But it may help you, if not him, in understanding something about how another person with this way of thinking thinks. It's also inspiring in what a man can do to work with the challenges.