Need help for son who doesn't know he has Asperger's.

<p>UC Santa Barbara has a support program for Aspberger kids, which I toured when I was at family camp there. It was very impressive. They mentioned that a lot of Aspberger kids have a difficult time in college away from family support. Suddenly, they are isolated. In addition to lots of other services, like role playing, the program employs students who serve as social facilitators. They do things like set up study groups, eat lunch with the student, etc. Perhaps they can refer you to similar services elsewhere.</p>

<p>I’m not a dr, but may I ask rhetorical questions that I hope aren’t just silly to those that live it…
If he was diagnosed at 3, and had intensive therapy, and now he’s brilliant, could it just be he’s been misdiagnosed?
Could it truly have been he was just a bit slow, but now he has not only caught up, but has flourished? All shyness doesn’t rise to the level of a disability. Girls are typically light years ahead of high school boys. Heck, we read in this forum about college age boys that still play so many video games that they don’t seek a girlfriend.
my thoughts are similar to post 19</p>

<p>Almost every adult I have heard of who received a diagnosis was greatly relieved to understand why they were different. When my son was 9 years old and just diagnosed I gave him a pamphlet from Ascend that gave highlight characteristics of Aspergers. He read the list and got extremely excited when he noticed it was a description of him. He was proud to have the diagnosis:-) I think just knowing that there is a valid reason for their differences is enough to reduce some of the stress (even if he doesn’t meet all of the criteria anymore). He can also seek out a support group at college which will probably help him feel more comfortable with a group he will probably connect with instantly. My son seems to only connect with other Aspies.</p>

<p>My son had a friend that was like that, a small LAC helped him a lot and he luckily found a girlfriend similar to him…“the quirky couple” they are affectionately called by some. He never had a difinitive diagnosis but sounds a lot like your son.
My son had ADHD and seems to have spectrum traits with touch and food, but not bad enough for his doctor to think he needed any help. He never went out to parties or bars,unless it was dinner, a movie/game, not wanting to drink and thought of himself as having a more developed conscience and mature beyond his peers. He did slowly catch up but it was more to me like they caught up with him. : )</p>

<p>My son is also a senior, and has known for a few years - he sounds very much like your son. He has embraced the “Aspie” label and it has helped him make sense of the way he sees and interacts with the world.</p>

<p>In the course of looking at college options, I found that a LOT of schools have good support options. Some specifically for kids “on the spectrum,” some for kids with a variety of issues. I’ve found so many I’m setting up a website to organize them all (pm me if you want info).</p>

<p>If it is that important to put a name on it, you might want to get him tested again. Aspergers is not an exact diagnosis. Also, you might want to seek a professional opinion on if, how and when to tell him.</p>

<p>@younghoss</p>

<p>I doubt it was a misdiagnosis. I think you dont quite realize what Asperger’s does to you: while you are lacking in social and sometimes oral skill, Autistic children have wonderful, brilliant minds and are much more capable of focusing for uber long periods of time than other people (like me), which is why we have so many autistic children who are brilliant in academics, especially math and science.</p>

<p>To OP: since Asperger’s no longer heavily effects your son’s life, I think it would be beneficial for him to hear what his past was like, and perhaps he might have some “so THAT’s why” aha moments. Wish him the best of luck in college! I wouldn’t worry about girlfriends: LACs have a lot if girls, and sometimes they find boys that don’t talk to them enigmatic and intriguing ;)</p>

<p>A just a curious question (bit unrelated but please don’t attack me for it). My younger brother (I worry about him a LOT… I’m like his mom all the time lol) is in ninth grade, and for as long as I can remember he has always hung out with boys. Sometimes I see girls huddled in their group at school, but they usually are gfs of other boys. Brother has also had a hard time learning to speak: at the age of two he couls only say “sis”, “mama” and “baba” (chinese for father). At preschool he played by himself and had trouble following directions because he would always be focused on one activity. He is brilliant at math and science: my dad has enlisted him as a programmer for dad’s company (unofficial tho lol).</p>

<p>My question about Asperger’s is: does my brother have it? Ever since I learned about it in health (freshman year of high school), I’ve had my suspicions, especially since many boys have very faint symptoms. My parents have never percieved my brother’s reluctance to communicate a liability, but I worry because to this day, my brother refuses to talk to sales associates (unless we are in fry’s and he is the only one understanding what is going on XD) and cringes at the idea of having to go up to other strangers and ask for help. Even at school he refuses to say hi to my friends (and said friends end up feeling apologetic that they might have offended him in some way lol). If Asperger’s is truly the case, should I convince my parents to take him for diagnosis and possible therapy assistance, or should I stop my yapper and hope my brother will overcome this phase by himself?</p>

<p>One thing to mull over if you decide to never tell him: what if he has a child on the spectrum? If, God willing, you are alive to enjoy your grandchidren, will you tell him when you start noticing Aspie traits in your grandchild? If, heaven forbid, you are not around, might it take longer for his child to be diagnosed - because your son won’t see that anything is different about his child - and miss out on some of the early intervention?</p>

<p>Another consideration is whether he will ever need the diagnosis. I am thinking about the ADA and employment. There are people who are quirky who get fired and there are people who are quirky and keep their jobs due to the protections of the ADA.</p>

<p>I agree with the suggestion to bring it up in a conversation, as naturally as possible. I would not make an announcement, would be very matter of fact, and try to steer a conversation about early childhood, perhaps reminiscing with him, so that it can be mentioned that early on in school some of the therapy was not just for speech, but for possible Asperger’s.</p>

<p>I would also discuss labels, and how they are vague and sometimes don’t mean as much as we think, that they provide a convenient way for professionals to categorize but that every individual is different, and labels change (as the autism spectrum definition is changing). Mention that some people like to finally have a label for a difference they feel, and others don’t.</p>

<p>Finally, maybe discuss that at college, people with certain labels get extra supports. More care in choosing a roommate, or the option of a single, for instance. Some people pursue evaluations again before college anyway, just to make sure things go smoothly. It can be for “learning style” or anything else that has accommodated the current school situation but might need time for adjusting at college. Ask him if he feels everything is fine, and tell him that if he has any worries you are willing to provide whatever he needs in terms of preparation and evaluation and so on, but again, convey skepticism of labels.</p>

<p>Just my two cents. I was a little concerned at the idea you expressed that early therapy has taken care of things for life. I mean, early intervention is great, but I would think that the person still has Asperger’s, for what the label is worth, and I would think problems would crop up in new developmental stages and situations throughout life. </p>

<p>One other thing, for anyone reading this and thinking their kid may be on the spectrum. You might want to google “prosopagnosia”, or facial blindness. It can cause trouble reading emotions and other social cues, even for those who are quite socially competent in all other ways. This disorder seems to be getting a lot more attention and research these days.</p>

<p>Yuhiko Jay - I’m no dr. but it sounds more like a social anxiety disorder. There may also be a touch of something else going on since he was late in some things when he was younger, but the social anxiety seems to be what you’re most concerned about now.</p>

<p>If you would like to talk to your son about his social issues and don’t want to use labels, draw a bell curve. On one end is the severely autistic person who will never speak, make eye contact or communicate in any way. On the other end is the most social, outgoing person you know. Place yourselves and others on the curve. Talk about the implications of being on one side vs. the other.</p>

<p>Do the same thing with other traits - intelligence, athletic ability, kindness, curiosity, bravery, generosity, pain tolerance, organization…whatever.</p>

<p>The purpose of the exercise is to demonstrate to him that he may be on the low side of the curve with respect to social skills, but on the high side of many others. If you do the exercise for others you know, a picture of all people being strong in some areas and weak in others will emerge.</p>

<p>Asperger syndrome cannot be cured. Treatments from 15 years ago have changed. Since he talks about problems associated with it, have him evaluated so you will know what services he needs before and during college to make him successful.</p>

<p>YushikoJay: Have you heard of Selective Mutism? I know a child with it, and he rarely speaks to anyone other than family members.</p>

<p>The information you have regarding his diagnosis is 15 years old. Personally, I would get updated information…then discuss the current presenting issues, if any.</p>

<p>Perhaps some here see a reason for using that old diagnosis now, as is, and prefer not to have student re-examined?</p>

<p>It wouldn’t matter what the diagnosis is…the reality is that anything done 15 years ago should be updated if you want current information AND suggestions about current protocols which have changed significantly in 15 years.</p>

<p>To OP: Don’t you feel that your son has a right to know about his diagnosis? </p>

<p>As others have suggested, you should seriously consider getting a new updated evaluation/diagnosis well before he enrolls in college. He will need the updated/recent paperwork in order to get any assistance/help while away at college. The minute he enrolls in the college, he will have to advocate for himself–seek out help for himself (tutors, counseling, accommodations, etc.). Having the updated evaluation/diagnosis on file in his college disabilities office will be a help to him. </p>

<p>IMO–Keeping the diagnosis secret from him is not a good idea. He needs to know about and understand the reality of his condition. It’s not something you can keep sweeping under the rug. He is an adult and should be made aware of everything. The key is in how you present the information to him.</p>

<p>Thank you, everyone, for your thoughts on this dilemma! In thinking about your feedback, I’m feeling DS needs to know about the challenges he had as a young child so he can make the best choices for himself going forward. I don’t know that I would be able to get him to sign on with a counselor in his new college town without a specific explanation, for example. Your insights have helped to make this clear for me! I might start off by focusing on the social challenges and see how the conversation goes.</p>

<p>I’m going to call the UCSB program and see if there might be parallel resources at DS’s LAC – perhaps less likely because they are so small, but there may be resources of some kind in the surrounding area as well.</p>

<p>@YukihoJay – If you have worries about your brother’s ability to connect socially, I would encourage you to seek further evaluation. We’re all social creatures – we need friendship to feel recognized and valued for our unique contributions throughout life. It sounds as though he is coping, while perhaps he could be thriving.</p>

<p>From what I have been told, Asperger’s kids often have increased difficulty (over and above the usual difficulty!) connecting with peers during adolescence, when there is a marked surge in social development among all the teens. To offer a biking analogy, it’s as if they’ve been pedaling hard at the back of the peleton for years, and then the pack pulls away from them at a certain point and they’re mystified by the separation.</p>

<p>@missypie, yes, i see your point about the grandchildren! My brother definitely has Asperger’s, though never diagnosed. He was admitted to HYP at the age of 15 and has always struggled socially. I’ve always thought that he would gladly have given up some of his intellectual gifts in exchange for a sense of belonging! That said, he’s had, and is having, a very successful career. And we love him dearly.</p>

<p>Remember posters that here is a difference in introversion and Aspergers. Read up on the extroversion/introversion differences for which you can draw a “Bell curve” and place all “normal” people on. Then read up on Aspergers and note differences from normal introversion as well as autism. By now it doesn’t matter if the old diagnosis was or wasn’t accurate- he got the help then. It will help him now to understand himself and learn how to better relate to others based on strategies that work for Aspergers. The reason to put people into categories is to figure out the best strategies to help them function optimally- labels are a shorthand for describing the problem. </p>

<p>btw- it can be hard for teachers of young children to differentiate between giftedness and attention deficit based on behavior, especially since the young gifted may have similar behaviors because they are bored (they can also have both traits). The solutions to problems are radically different. Normal introversion (which is NOT shyness- despite the misleading TIME magazine cover versus article this issue) is also different than Aspergers and solutions are different for getting along in society. </p>

<p>I like the stories of the “aha” moments. When I learned about introversion/extroversion it helped me understand how my son operates and why we’ll never be on the same page personality wise (could have avoided a lot of misery if I knew his needs were different than mine). Likewise knowing about his diagnosis of Aspergers will help this young man, especially since he is smart enough to make use of the knowledge.</p>

<p>OP, just in case you hadn’t seen it, this poignant opinion piece made me think of your situation.</p>

<p><a href=“Opinion | I Had Asperger Syndrome. Briefly. - The New York Times”>Opinion | I Had Asperger Syndrome. Briefly. - The New York Times;

<p>The related piece about historical over-diagnosis is interesting as well. I hope the pre-college re-evaluation will be enlightening for your son and your family. Best wishes.</p>