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

Parents Forum
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<p>I never told DS, now a hs senior, that he was diagnosed with Asperger's as a young child (3 yrs). He received a wide array of services through our school district (OT for fine and gross motor delays, speech therapy, social skills therapy) from 3-7 years old and then he "graduated," having benefitted so greatly that he no longer met the autism criteria. He was a brilliant young boy, with a collegiate vocabulary, an encyclopedic memory, a very advanced comprehension and almost no ability to connect with peers. </p>

<p>He's still advanced in his intellectual ability (IQ above 150, though I know these things are imprecise) and still has some difficulty connecting with friends. Boys are ok, it seems, and he has 5-6 friends with whom he eats lunch each day. Girls are light years ahead of him socially, and he can't seem to make any casual friendships in this realm. </p>

<p>He's been admitted to his first-choice college, a small, prestigious LAC, to which he applied ED. Now he's looking around him after three and half years of a very intensive hs grind and realizing that he is "way, way behind socially." His words to me last night.</p>

<p>His friends have given up on inviting him to social events because he's always been too busy academically. He says most of their parties involve alcohol and underage drinking anyway, and he's not comfortable with these, for which I'm grateful. But there are also movie nights, bowling, etc. to which he does not get invited. His teachers love him, feel he's destined to cure cancer, etc. and I would say his closest hs connections are to these wonderful mentors. But now I'm afraid he's heading off to college without an appropriate support system.</p>

<p>I wonder if I ought to have told him about the Asperger's earlier. He remembers all that early intervention as simply "speech therapy." I feel as though the diagnosis is the elephant in the room, and yet, he's a fairly prideful young man (in matters concerning his intellect, competence, and ability to help others) at this point, and I don't want to undermine his confidence with a label.</p>

<p>He's a wonderful person, KIND, generous, brilliant, thoughtful, just very awkward socially. (I was sick last week and he was texting me from school asking whether he could bring me some chicken soup and Advil after classes let out. He delights in offering academic help to other students and he is often asked to do this.) Despite all my best efforts over these eighteen years, encouraging sports and plays and student government (all of which he has participated in to a limited degree), I feel I have failed in nurturing the social skills he will need to thrive over the next four years and beyond.</p>

<p>How can I help my wonderful lonely guy? Thank you in advance for any insights and ideas! I love the wisdom of the parents on CC and have been trying to gather my courage to post here for quite some time!</p>

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<p>He’s so intelligent, that I think he would only benefit from you just coming out and telling him. It might be the wrong comparison, but my mind went immediately to that movie (and true story) “A Beautiful Mind.” The guy was so intelligent that he was able to work around his schizophrenia. I think your DS would be able to do the same with his Asperger’s. He’s going to understand now why he feels he might be socially behind, and then work around it. It’s like finally knowing what the problem is, and figure out a solution.</p>

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<p>My son sounds very similar, however he received services until 8th grade. But we never shared a diagnosis of “Aspergers” with him. Instead we focused on his actual differences. We explained that everyone matures at different rates, has different specialities and quirks, and that if he wanted to make friends then we would help. Fortunately, we found a summer program that specializes in social skills which helped a lot. But we did a lot of role playing at home - how to read body language, how to initiate conversation, how to fake being interested in other people, etc.</p>

<p>One of the hardest things for our son is to ask questions. He’s just not that interested in other people. So we practiced a lot - made him take the initiative in calling friends and arranging outings. It was quite a milestone when he finally called someone to say “Hey, do you want to go to a movie?” He’s still very self-centered and self-absorbed, but he’s doing better. </p>

<p>In my opinion, telling your son about an old diagnosis, that may or may not still be valid, isn’t helpful. Perhaps just work on brainstorming ways that he can break back into the social circle. And, forget about the girls for now, that will come in time. After all, our therapists always told us that Asperger kids are always 3-4 years behind socially. It will all come in time.</p>

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<p>Thanks, mom0809. I loved “A Beautiful Mind” too, and I could see that the revelation could help him immensely. I just can’t decide whether the knowledge would be the necessary “aha!” or else shatter his sense of identity.</p>

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<p>You can’t change the past. You did what you thought best at the time- a mantra for all parents. It sounds like a good idea to tell him about his early diagnosis and help throughout his childhood now. You and he can then decide how he can optimize his social life from now on. He may choose to read up on things. Telling him now- and it’s the weekend- gives him time to practice any social skills during the final months of his HS career. Spring semester HS seniors are the most mature of their childhoods. I remember how much nicer everyone was when it was too late to cultivate friendships back in my time. His friends can help him, especially now that everyone is old enough to handle this. Mistakes made now will help him not repeat them in college. Sounds like a good project to round out his HS years. Go for it.</p>

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<p>I don’t understand keeping the diagnosis secret. Personally, I think it’s unfair to him to keep it secret. My friend’s asperger son was relieved when the diagnosis was finally made. He knew something was different (especially the social aspect), but didn’t understand what it was until the diagnosis. Then, it all made sense to him. Having the diagnosis opened him up to understanding what and why he needed to work on certain skills.</p>

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<p>I would tell him. He’s smart enough to know he’s different and will be able to give a name to his difficulties. He will have an ah-ha! moment and start researching ways to accommodate and grow. I told our son with moderate autism when he was about 12 (he is now 23) using a workbook provided by our autism impaired school consultant. We got through about 1/2 of it and then he went through a period of: I have autism, I have no friends. When he hit HS, we signed him up for cross country to have a peer group and that phrase disappeared, but he never really had friends. He doesn’t read faces and doesn’t understand emotions.</p>

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<p>I might strike up a conversation about his hopes, fears, and expectations about getting along socially in college.</p>

<p>Given the opportunity, I would say something like, “You know, when you were younger, you did have some issues with this, enough that the doctors even told us you qualified for a diagnosis on the autism spectrum, but with the help you got back in elementary school, you licked a lot of those problems. But sometimes, kids with that type of a brain encounter new problems in college, and there are some tips and tricks that can help. I’ve seen some workbooks and self-help books, aimed at young adults with problems on the very mild end of the autism spectrum, and I think some of those might be helpful. Should we check them out?”</p>

<p>I say that’s what I’d say/do because that is what I said to my daughter, minus the part where she’d been diagnosed and treated early on, because she wasn’t. She did not, in the end, meet criteria for a diagnosis but she has issues that are similar to those with an AS diagnosis, and the workbooks/self-help books did seem useful to her.</p>

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<p>I think what happened in the past is a moot point. It sounds like you’ve done beautifully, and so has he. I think lots of HS seniors could stand a fresh look before they go to college - where it’s around medical diagnoses, LDs, social issues, emotional challenges, etc. Why not make an appointment with someone who could evaluate where is now, help him understand what might or might not be an appropriate definition of what his concerns might be, and work through some approaches that he can take with him into his next step? It sounds like it’s time for him to work maturely and independently on this part of his life, and building a relationship with a therapist, coach or other professional might be a very helpful step.</p>

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<p>The Aspergers diagnosis may be changing anyway:</p>

<p><a href=“New Definition of Autism May Exclude Many, Study Suggests - The New York Times”>New Definition of Autism May Exclude Many, Study Suggests - The New York Times;

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<p>In my opinion, you should definitely tell him. In my experience, people generally experience a profound feeling of relief when they finally learn that a disorder may be part of what’s making their life difficult - be it a mood disorder, or anxiety, or something on the autism spectrum. It sounds like your son is a very rational person, and regardless of how he takes the news, you’ll be there to help and support him as you have been his entire life. But IMHO, he deserves to know.</p>

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<p>He’s about to be a leagal adult - he should know, as he’s going to become responsible for his own care pretty soon.</p>

<p>What does he mean by “way behind socially?” Not dating, no girlfriend, or whatever the currency to be “cool” is? Is he lonley by his defintion or yours? Do not to sweat it - he’s already discounted whatever behaviors are considered “cool”. It does not sound like he is terrified of the idea of going to the LAC next year; so it may be more of a case of encouraging him to find his own way out of his shell. Take advantage of the admitted students day, orientation, and other people and events to find out what groups are at his school - he may find something he likes, is already doing (tutoring at a nearby school?), or wants to learn more about. He just needs one or 2 mentors. Make sure he knows (he probably does) he can always rely on you for advice, but let him make his decisions. I think he’ll be fine.</p>

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<p>The women outnumber the men at most LACs, so the odds of him finding a compatible girlfriend will be in his favor.</p>

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<p>@EmmyBet, thanks for your kind thoughts. Yes, I would love to find a coach or therapist for him. Someone knowledgeable about Asperger’s and teens/young adults.</p>

<p>@deskpotato, this is a great idea as well. Which books did you find most helpful? I would love to seek them out.</p>

<p>@alynor, I saw this article. While DS would absolutely have qualified under the new definition, I feel regret that many Asperger’s children will be excluded. Early intervention made a miraculous difference for DS. A very educated preschool teacher, an enlightened school district and a myriad of special-needs professionals deserve the credit for bringing him so far in those early formative years. </p>

<p>Does anyone feel that it might make sense to find a therapist in next year’s college town? Someone he could speak to over the phone until he actually arrives in the fall, and then touch base with regularly?</p>

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<p>I wouldn’t recommend A Beautiful Mind because John Forbes Nash didn’t just have aspergers, he had schizophrenia and I think that is the disturbing thing that comes out in the movie and book. I agree with those who think that giving his social differences a label doesn’t seem necessary. I think it would make sense just to listen to your son about his concerns regarding his social life and then look at what is offered at his new school and help him think through how he could spend his time there so that he could make friends. Going to a new place is not easy for any introvert - with aspergers or otherwise. Having a caring parent who can help you think through how to get to know people, settle in and find your place, could really help. I wish you both all the best in this transition.</p>

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<p>^^ I think the therapist near college is a wonderful idea. </p>

<p>Whether you decide to divulge the diagnosis or not is really a very personal matter and only you would have an idea of how he might react. For some people having a ‘label’ may be a relief, for others a burden. I wish you and your son the best. It is great that he has found a school that you both love.</p>

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<p>We never talked about it until college. I’m so glad we finally did. People need to know they are not alone and that there are things they can do to help. Then I sent him this link: [Asperger</a> Syndrome - Asperger’s Syndrome - Aspergers Syndrome - Symptoms of Asperger Syndrome](<a href=“http://autism.about.com/od/aspergerssyndrome/a/adultsaspergers.htm]Asperger”>Mild Autism in Adults and Children: Symptoms & Support)
and he thought it might be possible that he had it, being low on the spectrum. </p>

<p>Later, he took the Meyers-Briggs personality test, and decided he didn’t have asperger’s, but was the INTJ personality type, which have some similar charachteristics. And getting out of the small high school environment, having the social freedom and personal responsibility, so many choices…has been absolutely wonderful for him.</p>

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<p>I was diagnosed at age 20, and the knowledge of my diagnosis was absolutely life changing in the most positive ways imaginable. My social skills have improved by LIGHTYEARS in the last two years. Your S can’t learn to compensate for something when he doesn’t know what it is. I didn’t realize what I was doing wrong, or learn to catch myself at it without help, until I knew. I don’t know if I believe your S CAN improve without this knowledge, you cannot fix a problem you cannot identify. Not without making it a lot harder than it has to be, at least.</p>

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<p>I believe that one can change “behaviors” without labeling it a “syndrome” or mental illness. For our son, his behaviors were - lack of eye contact, difficulty making conversation, not reading social cues or emotions, repetitive/obsessive behavior, etc. Each of those differences were addressed and, to some extent, overcome - and we never labeled him with Aspergers. As he has grown older, and has friends with Aspergers, he sees the similarities but does not seem to be held back by a label or use it as an excuse. Behavior is behavior - with or without a label. </p>

<p>I agree that it is a personal family decision whether or not to tell. It may help to have a medical history when he starts a family just so he can be on the lookout for similar patterns. But, honestly, both my H and his father probably have Aspergers too - but have gone on to become successful college professors with no label or diagnosis.</p>

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<p>Please don’t beat yourself up about not telling him earlier–after all, he “graduated, as you said;” his treatment was effective; there was no need to say anything until now as you look to the future.</p>

<p>Please also know that many intelligent boys who have never been diagnosed with anything on the autism spectrum, nor would they ever be, aren’t terribly active socially in high school. I know several boys who never went on a date until college. One very smart boy I know did a few things with girls as friends or in a group, but didn’t have a real date until he went to college last year, when he found a girlfriend within the first several weeks. Your son has several male friends at school, so clearly he is capable of making friends.</p>

<p>I commend you for looking to the future and trying to help your son prepare for college. Every parent should help his or her children get ready. </p>

<p>I don’t have additional advice, unfortunately. My niece who is autistic is much further on the spectrum.</p>