Teens & Preteens with High Functioning Autism

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• How/When to tell Teen she has Aspergers
• Driving school for Asperger/ADD Teen?
• Help for special needs teen with aspergers syndrome
• Disclose Aspergers diagnosis to peers in high school?
• 10-yo's social difficulties; he doesn't know he has Asperger's
• 14-year-old headed for high school, worried about loneliness

How/When to tell Teen she has Aspergers

March 2013

''Sally'' was diagnosed with aspergers 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

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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

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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.... ++++

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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

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Driving school for Asperger/ADD Teen/SF Peninsula?

June 2012

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

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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.

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Help for special needs teen with aspergers syndrome

Jan 2012

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.

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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

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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

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Disclose Aspergers diagnosis to peers in high school?

April 2010

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

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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'')

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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

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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

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10-yo's social difficulties; he doesn't know he has Asperger's

Jan 2010

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

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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

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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!

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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

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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

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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.

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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

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14-year-old headed for high school, worried about loneliness

June 2006

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

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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

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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

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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

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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