Diagnosis of Aspergers for my son - now what?

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My son and I just got back from the psychologist. His diagnosis is Mild Aspergers. We will get the written report in 10 days. While this isn't a surprise, I'm surprised anyway. I'm not sure what to do... do I do anything?! Who needs to know?

I'm telling his teacher - she pointed out her suspicions during the parent-teacher conference. (Every teacher has pointed out my son's "differences" since pre-school! I've known there was something different since his birth....)

I'm not sure if I should tell his gymnastics coach - my son is on a gymnastics team and doing extraordinarily well, although he does get in trouble a lot due to behavior issues. My son is VERY good, best in his team for his age-group, wins awards and trophies... I hate to throw a "disability" into an area in which he excels.

As for the extended families - I dread telling them. Should I even bother? I think there is a lot of denial due to a lot of undiagnosed Aspies - my unverified opinion; my father, my sister, my nephew, my brother in-law, my husband, his father, all 3 of his brothers....
And yes, I've considered myself - but frankly I seem to be the odd NT.
Anyone with experience on who they told and what reaction they got? What does this diagnosis buy me - in terms of support/help for my son at school?

hello quick presentation, i'm AS myself, mother to a 9 y old boy (AS) and a 18 months old girl ( undefined yet) . i can't tell you what you're entitled to , legally, in regards to the school etc, since i live in france. i can tell you what happened when i told some members of our family though. First i told my mother, about myself and my son ( i was diagnosed late) and her reaction was : "ohhhh now i understand your reactions..... " but she thought about it for a few days, and told me a friend of hers ( child psychiatrist) told her about his suspitions about me when i was 8, and she brushed it off, and had been in denial ever since. so when i told her about my son, she told me i was so brave for facing it like i did (?) and that i was a great mother, i suppose she felt sort of guilty about the way she had reacted 20 years prior.
i had to tell my sister also, and she was very curious about it, she did some research herself and her reaction was mostly very intelligent.
Now. Two weeks ago, my grandparents came to visit. My son was on the computer, he did get up to say hi when i told him to, but quickly went back to his stuff. there were some looks exchanged, some weird sentences also, that i didn't like very much. "apparently we are bothering him when we visit.." or " A, are you on the computer the whole day long? don't you ever do anything else? " ( mean and confusing questions) i was getting more angry by the minute, when my grandfather just started calling his name and saying "why doesn't he ever answer when people talk to him?? "
so i told them. i just wanted to shut them up i guess. their reaction was weird. a mix of "poor kid" and "poor you", making full sentences like "i feel so sad for this kid, he was such a beautiful boy, and now look at him" so i snapped again. i told him :
" he's right there, he's still alive, and you do realise he can hear you mourning him right??" he shrugged and said "i am not certain he hears anything at all." i resisted the urge to throw them out or have a screaming fit, i waited until they were gone and explained to my son that they were very old and not very smart. as they were leaving, my son popped his head out of the window , and told them they were invited for his birthday. he doesn't realise how horrible they are lol...that made me sad.
Moral of the story, if someone seems close minded, or is too old, it's sometimes best to not tell. Some people will never get it.

IMHO, a diagnosis is a tool that you can use to help educate yourself, and to obtain support services, accomodations, and other extra help for your child in school. You can also use the diagnosis as a tool to obtain medication if necessary. If the student doesn't need support services, accomodations, or medication, then the diagnosis may not be all that helpful except to educate yourself and family. Frankly, once we had a name for my son's challenges, it opened up a whole world of information that we didn't know existed before his diagnosis. But if there is a need for help, accomodations, or medication later in life, then you've got the tool you need ready to go. Other than that, I think the golden rule applies: who does your child want to know about the diagnosis? Probably nobody. In my case, my son is very aware of and embarrased by his differences, and I respect his privacy, so I don't tell anyone without first checking with him or unless its on an absolutely-need-to-know basis. We have told some of his teachers about my son's diagnosis because it can help them to be better teachers. We have told his grandparents about my son's diagnosis because he spends time with them over the holidays, and we want them to know how to help him when I'm not around. Bottom line is, a diagnosis is a very personal and private thing and it should be up to the individual who they tell about it. As parents, of course, we sometimes need to step in and make that judgment call on behalf of our children.

ediself and DenvrDave, thank you for your responses. They've been very helpful. For the time being, I think I'm keeping this information private. I will confirm it to his teacher - she's noticed already and was very encouraging about us getting a diagnosis. It has been helpful for her.

My extended family is in such extreme denial about the problem, that I don't want to say anything. They all claim there is nothing different or "abnormal" about my son. To acknowledge he is different, is to acknowledge they are also different..... they don't want to do that.

How did you tell your son he has Aspergers? Did you tell him? Did he understand what it means? I've tried to tell my son - he doesn't seem to care. It's a boring topic for him....LOL

How old is your son?

If the teacher was bringing it up, they may be hoping to encourage you to get some extra support at school. I'd definitely talk to the teacher to see if they have anything in mind. My son who is only 4 gets help in areas of pragmatic language (social language) and social interaction as well as some occupational therapy at school. As he gets older, I imagine that some of this will go by the wayside and we'll change it up based on his needs. So far, the extra support has given him a LOT more confidence and has made preschool much more fun. We have not received an official diagnosis at all. He's just had school assessments that have identified specific needs. And, he happens to have the needs of a child with asperger's. So, here we are... and we expect he'll end up with a mild asperger's diagnosis at some point.

What you do with the family depends a lot on what you think you'll get out of it. I've kept all the grandparents informed every step of the way, because I want understanding and support from them. For the most part, they've been good about it. There's been some, "but he seems normal to me" types of conversations... and at the same time some hurt feelings for how he acts toward them (sometimes unemotional or seemingly rude)... so, I think it's helping them understand him more. I also think we have a great deal of undiagnosed aspies on my husband's side.... and I've wondered about my father as well.

I probably wouldn't notify the gymnastics coach unless the behavior is becoming really problematic. Even then, you might just be able to figure out some ways to keep behavior under control and then talk just about THAT with the coach. Dealing with the specific behaviors is something a school based professional could help you with as well. So, there's another reason to potentially get the school involved.

Good luck to you and whatever you decide to do!

I'm an Aspie mom with a normal hubby, two Aspie children, (male, age 18 and daughter, age 11), two "normal" kids (male, age 16 and female, age 15, both are step-kids although I don't view them as such), and one normal nephew (age 15). Hopefully, what I've done since the diagnoses were made will help you a bit.

First, understand that Aspergers isn't a "disease" or an "imperfection". It's a set of behaviors/traits which are outside of what normal people experience, and neurological differences in the brain cause many of the things which are considered abnormal in Aspies (aversion to overstimulation, flapping, OCD tendencies, antisocial behaviors, inability to read body language/voice cues, inability to understand social etiquette, narrow fields of interest, hyperfocusing, ADD/ADHD/OCD complications, etc.).

A younger child can feel overwhelmed and frightened when they hear their own diagnosis. It sets them even further apart in a world where they already feel estranged. Of course, your son could just have the same reaction my son did..."Ah, THAT'S why I never fit in!" and keep on doing what he's doing. It isn't indifference so much as it is acceptance of fact. However, I will point out that after diagnosis, my son's computer history showed that he was exploring the diagnosis on his own in a quest for understanding himself.

Educating yourself on Aspergers is paramount when attempting to understand the many aspects of it. I'm dealing with several subtypes of it here...My son is logical Aspie with ADD, my daughter is emotional/anxiety Aspie with ADHD, and I'm logical/anxiety Aspie. What I do to cope in a situation may not necessarily work with my kids. My son and I both internalize problems, while my daughter verbalizes everything. Pity my poor hubby...He's walking on a minefield no matter where he goes with us three. I've had to do quite a bit of educating with him, too, so he understands the why's and how's of responses which often baffle and/or anger and/or discourage him. However, once you have a good understanding of Aspergers, it's easier to describe to others those traits.

I use the diagnosis as an opportunity to show what "normal" people feel, see and experience to my kids, so that they understand that while "who they are" is different, there are many inherent similarities. For my own experience, I was sucked into the diagnosis process when my son's diagnosis was made. As the psychologist described the behaviors, my son (then 14) sat in silence. When she stopped speaking, my son looked at me in complete trust and said, "Mom, how is this bad? All she's saying is that I'm exactly like you." *cue "Psycho" music here* I was diagnosed two months after my son, and two years before my youngest child.

The diagnosis is indeed personal, and difficult to describe to those unfamiliar with Aspergers. I divorced the father of my Aspie kids nine years ago. When I told him about our son's diagnosis, he was okay with it...Unfamiliar, but okay. When the diagnosis for our daughter came around a few years later, the response was remarkably different and painful. I was told that the child wasn't like her brother, there was nothing wrong with her, she just needed her rear end beaten because I had spoiled her rotten, she was hateful and needed to be taught the "right way to be", the psychologist (who is a formal regional head of the state office of Health and Hospitals) is a quack and has no clue what's wrong with the kid, etc. You see any denial in that reaction? *wry laugh* My daughter, perhaps understandably, does not like going to her father's house because of the tension and constant conflict over there because she's treated "normally", and she's constantly screwing up somehow (according to her father). It's a sad situation, and one I cannot help except to teach my kid how to keep herself occupied and out of trouble until she comes home. The rest of my family was very supportive of the diagnosis, once I explained to them what the diagnosis was in the first place. They understood that I was different, too. I guess in their mind, it was natural that the "strange" kid beget more strange kids.

Teachers/school administrators/school counselors have to know, because the sociological aspects explain why a child may get in trouble a lot with peers. Schools can make accommodations for the disorder, including offering counseling and educational resources. My son has several opportunities open to him in college, including scholarships, which may not have been made available had he been "normal". However, since my son is an honors student, the grades help to make him more attractive to higher education facilities. Your son may experience some of the same things due to his prowess in gymnastics. In your situation, I would also let that coach know about the diagnosis, and give him some literature on the social limitations aspect. It will go a long way to explain why he's so good at parallel competition but perhaps sucky when it comes to teamwork and team-building skills.

I engage my daughter in simple, somewhat humorous explanations when she messes up right now. Her diagnosis is relatively new, and she's only been in therapy since October 2010. Human behavior baffles her, and because she's going pubescent, her hormones are going out of whack, too. She knows she has Aspergers. She knows she is different. My explanation to her was to the point, as was my describing where we go from here...Lots of therapy appointments, lots of explanations, and yes, lots of opportunities to mess up. We just work through them and try to teach coping skills which will carry her through the next time she experiences the situation.

There is a great thread on this board regarding books which will help you work with your kid. I'm currently reading, "Parenting your Asperger Child", which has a lot of in-depth information on long-term strategies for helping the child cope and navigate the world.

Sorry about the missive

Hi Thorny Rose, I thought your reply was very insightful and helpful, and I very much appreciate you posting it I particularly liked the common theme of "education" as in, educating oneself, family members, teachers, etc. as I think this is the single most effective thing we all can do to improve tolerance and make the world a better place for our children, understanding it is a slow process with barely any perceptible immediate results. Anyway, thank you so much for sharing.

I do have a question about your reference to subtypes:

Hi , i am 44 with AS(late diagnosis) and also excelled at gymnastics from age 5-16. I did the solo jump at a school gymnastics exhibition and could concentrate more than the others due to my AS.

IS he extremely flexible?? I still am, but know it could lead to arthritic problems.

Thanks.

I have nothing to add, but that's SWEET he's doing gymnastics. Try to encourage him to stay in it as much as possible, as when he grows up he'll be strong as all hell from it. I've heard of 130lb gymnasts deadlifting like 400lbs their first try and stuff. I really wish I could have done gymnastics as a kid looking back, as it makes you super strong and athletic. It has the stigma of being "gay" or whatever, but screw it. Any experience he gets there would easily carry over to any other sport he does. Also, too, gymnastics is a really hard sport to break into when you're older, so it's better to accomplish what he can accomplish while young. But DO encourage that, it might be basically a lifesaver for him, and especially being around the other females, it'll be good for him to build up the social skills in that arena. It's gonna be harder to keep him in it as a teen, but I'd try seriously to encourage him to not quit.

I'm saying this from the experience of a guy who started an equally stigmatized sport, figure skating, at age 20. I'd have been so thankful if I could have started younger, I'm making progress now, but still, if I could have started younger, wow, my life would have been so much better.

As for the coach, maybe explain it, yeah, explain it. Don't say "Aspergers" as Aspergers is getting to be a bit of a "in vogue" kinda diagnosis, and it's losing it's meaning, say "high functioning autistic" instead, and don't do it in a like "pity my poor son" kinda way, just do it in a "just trying to give you some info" kinda way. Not that private coaching is probably monetarily feasible, but generally the smaller the groups and more individual coaching is, and most importantly, the more questions he can ask, the better. But I know monetarily that's expensive.

Your son, depending on his age, might like Greenturtle74's Cartoon Guide to Asperger's in Wrongplanet's general autism discussion forum. My son loved this. I sent it to my siblings - not recommended for you. My son also liked a book called All Cats have Aspergers b/c he loves cute pictures. He had very low self esteem at that point so we had to discuss it little by little, not all at once. He now is okay with it but I think eventually he will be proud of it b/c his IQ and functioning are so high. He does like to use high vocabulary as a "weapon" against kids who put him down.

Your son sounds different from my son, so I'm not sure what words you'd use but I used words in general terms for people who are causual relationships or who wouldn't take the term Aspergers well. Mostly I used the term highly-sensitive. Other words might be perfectionistic, emotionally immature, nervous... other posters might have better ideas.

As I gradually accepted the diagnosis, it became easier to know what to say to whom. The % of kids diagnosed w/ Aspergers is still climbing. Your use of the term will only make it easier for others to understand ASD and to accept him and others.

While I am not a Parent I do know its important to decide who you tell about the diagnoses and who to keep it from. I would consult with your son before you tell anyone about his diagnoses.

You see there are some people who are quite defensive when people go about telling someone else about their diagnoses even if its to help them. You don't go to a party and say "Hi my name is Dave and I'm Autistic" Allow people to see how smart your son is, his sweet demeanor etc. We all have quirks Autistic or not and we just learn to cope with them.

I was at a party yesterday and I noticed that some of the attendees could have Aspergers and of course I did not mention it. I just went along with their quirks and had great conversations with them.

If you want the services for your son then yes by all means tell the people at your son's school. The school is bound to keep the diagnoses private and you should decide whether you tell your son't gymnastics coach about it or not.

I don't like the people who deny that a person has a disability. If they do not accept the person for who they are then can they accept themselves?

I can see your son's potential and again if you think mentioning his diagnoses to people who can help him then ask your son first and go together to any meetings, testing etc. You are all part of the team but its your son who can learn how do advocate for himself to get the support he needs.

Its like if you have an allergy to nuts you would be able to learn how to ask if the foods have nuts in it and you try to avoid all contact with the foods you are allergic to.

Have your son make a list of his strengths and weaknesses and see how you can turn his weaknesses into strengths. If he has an IEP or if he will have one you can possibly use these as goals for him.

I wish you both much success on this journey(:

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