You might take a look at a book called "Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence" by Luke Jackson. I have a review of it on my site at http://specialchildren.about.com/od/developmentalissues/gr/freaksgeeks.htm . The author is a 13-year-old with Asperger's who explains things both for parents and for other kids like himself. It might be something you could read with your son that would help him understand his differences in a positive way.

What I try to tell my kids (one with learning disabilities, one with fetal alcohol effects) is that everybody is different. Everyone has things they're strong in and things they're weak in. Everyone has preferences and phobias and unique wiring of one sort or other. A diagnosis just helps us guess better where our kids' particular strengths and weaknesses will most likely fall, and gives us clues for helping them along.

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Yes, we told our son about his diagnosis. We told him he was going for testing when he went (and that was when everyone suspected Asperger's). He was 7 at the time; 8 now. We told him that the school psychologist and the doctor suspected that there might be something different with the wiring in his brain and that if he was tested and we figured it out, we could help him to "learn better".

When we got the ADD diagnosis, we were shocked. We were prepared for Asperger's, not ADD. But we told him what the testing showed, we checked out about a dozen library books (written just for kids), and we talked and talked and talked. We always let him know that it's not his fault and it's also not an excuse to misbehave.

When we finally decided on medication as an option (nearly a year after the diagnosis, and after all other avenues had been tried), we made sure he understood and was part of the treatment. We don't force him to take it. If he doesn't want it one day, he doesn't have to have it.

He knows he's different, but he knows that EVERYONE is different; we all have strengths and weaknesses and that's OK. As he says, "The world would be really boring if we were all the same."

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I appreciate Terri's point that we need to approach a differnce as a differnce and not as a negative. She is right, everyone is different. Often times it is the ability to look at a thing differently than most others do that we as a civilization progress.
I also appreciate hearing about the book she mentions.
The are a number of resources to use with children of different ages - there is a workbook called Asperger's: What Does It Mean to Me? http://www.amazon.com/exec/obidos/tg/detail/-/1885477597/102-6026398-5895355?v=glance

I think it is important to also, if the child is willing and able and it is appropriate to allow them ownership of the dx, whatever it is and to let go of it as the parent.

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I wish I knew more about Asberger's. I do know that Elcie's C. P. has left her with some of the same problems you describe, especially with her schooling.

I don't know the right answer. We have almost always included her in the meetings with her doctors, counselors, therapists, etc. That could have been the wrong thing to do. I felt that her cerebral palsy belonged to her, for better or worse, and she should understand what was happening.

I do know Tourette's and Asberger's are not cerebral palsy and your child is not Elcie. I guess each family has to decide the best thing for their child for themselves.

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Hi - a friend of mine gave me this link and thought I could beof some assistance.
I have a 13 yr old Aspie, who was diagnosed in the third grade.
Let me just say what I am sure you already know.
These AS kids are bright and sensitive in their own right. And they are also their worse critics. (Aren't we all?)
There is a VERY strong chance that your son already feels 'different' than the other kids - at this age, I know my son did.
We were so glad to finally get the dx, that we shared it immediately with him, so that he would know he wasn't 'alone' in this - that there were other kids who thought, felt and lived with the exact same things that he did - every day of their lives.
We have never allowed him to use his dx as a handicap - but have ALWAYS worked with his educators and school resource staff, to make provisions, where the school Policies and Procedures were just NOT Aspie friendly.
He does not get timed testing, he has a one on one SECA aid, who accompanies him to 5 out of 7 classes.
Our goal being to get him gradually weaned off her assistance, by the eime he is a junior in high school - or sooner.
She helps him stay focused, keeps him 'in line' task wise and 'translates' what the teachers are saying, into basic, unflourished english, so that he doesn't struggle with social nuances and innuendo - that most middle school teachers incorporate into their classrooms, to 'be cool'. He is extremely literal.
He is solely responsible for doing his own work and is very capable, when presented in a way that is understandable to him.
He is handsome, bright and popular - but very shy and not real outgoing.
He has a great sense of humor and has come a VERY long way, compared to when he was in 3rd grade.
He is living proof, that school can be a wonderful experience and very rewarding to even a textbook Aspie - with the right accomodations, directness and support.

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I happened to stumble upon your entry on a Yahoo Search for Asperger's and I'm glad I did. As a teen with Asperger's, I strongly suggest you tell your son as soon as possible. The fact is he is different. What's more, this is not a bad thing. Any individual who accomplishes anything is different. It's his right and his requirement to know who he is, and what makes him different from those around him. Furthermore, Asperger's Syndrome is hardly what one would think of as a disability. I recommend you take a look at Norm Ledgin's "Diagnosing Jefferson", a wonderful book that suggests that one of the founders of our nation had Asperger's. As I and the book can attest, it is not in spite of but because of the characteristics that set us apart from others that "Aspies", as the popular nickname goes, have the ability to do great things.

The day will come when Asperger's will be recognized for what it truly is: a difference, not a disability, and in many ways an advantage. I think you owe it to your son to talk to him about who he is and help him succeed as that person, not pretend (or worse yet, force him to pretend) to be someone else. I'm somewhat notably successful for my age and as a result I've occasionally been asked to speak to newly diagnosed "Aspies" and at a few conferences about Asperger's and special education in general. One of the things I've always tried to stress is the vital importance of recognizing the advantages of difference and not falling into the trap so many do that different is defective.

I urge you to teach your son this when you tell him, talk to him about the notable people who share his neurology and make sure that while he must gain the necessary skills to succeed in a world populated mostly by 'normal' people, he not be forced to lose his unique perspective as a result. If you find yourself in need of any further advice, please respond through e-mail. I can be reached at aspergianneocon(a)gmail.com

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My son is now 12. He was diagnosed with Tourette's Syndrome at age 4. In some respects we were lucky because at age 4, they are very accepting. We have always spoken openly about his Tourette's - it's just like Mom's eczema, and his brother's asthsma, and Dad's troublesome back. Everyone has something that bugs them healthwise. He accepts that, but sometimes wishes he had the asthma.

For years he would not speak about his Tourette's, he chose to ignore it. Two years ago, I heard him telling his friends about Tourette's and last year he went public - he did a speech on tourette's telling everyone in his school that he picked that subject because he had this condition. He won that public speaking competition and is now working with me and a hundred other volunteers on a large scale volunteer project to raise money for Tourette's research.

It took a few years of patience but he has turned into a wonderful spokesperson for those who are different. My biggest advice is to approach your son pragmatically - it's no big deal, it is what it is. Too much attention will turn it into a boogie man. Don't push too much on him too fast. They need alot of time to absorb things. It takes time, and there were many moments when I wondered if I had approached it correctly, but it sure worked in the end.

I am so very proud of my son and I know that pride stems partly from the fact that he is different.

Lynda

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Oh, thank you all SO MUCH for your comments and support (and please, continue to weigh in!).

My son's best friend has Tourette's and he thinks that is cool, so I don't know why I ever thought Asperger's would bother him. It doesn't bother me. Christian is one of the most interesting, funniest, most wonderful people I have ever ever met, and I wouldn't change him for the world.

I will tell him right away-- he is with his Dad until bedtime, but I will either tell him tonight, or tomorrow.

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I hate to just repeat what others are saying, but I think it is worth repeating: Treat differences as just that, differences. Not a disabilitity. Not a problem. Just a difference. Everyone is different.

We've told our teenage autistic about his diagnosis, what it means, etc. Unfortunately, he is not verbal or communicative enough for us to know if he really understands. I think he does, but truth be told I don't think he really cares. (One benefit of not feeling peer pressure.)

I also must recommend Freaks, Geeks, and Asperger's syndrome (which I wrote about briefly at http://29marbles.blogspot.com/2005/03/freaks-geeks-and-aspergers-syndrome.html. I gave a copy to my son's teachers to help them as well.

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We have a pre-diagnostic interview coming up next week for Asperger's. I'm nervous, because he's already been diagnosed with ADHD and ODD. Perhaps wrongly. I don't know. He knows about that, and he knows why he takes medication and he understands why we go to the "talking doctor" so much. Now with this, I'm just kind of... doing the wait and see thing. I will tell him, of course. There's not much I don't tell him. I just want to make sure that he doesn't think that all these labels and such mean that something is *wrong* with him. I want him to know that it's just one of those things that makes him different. We all have lots of those.

I'm really nervous though, even so. More about the other diagnosis being wrong, than this one being right.

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Another great book is "Quirky Kids". I highly recommend it.

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A message board I belong to about Aspergers Syndrom recently discussed this same topic. Here is a link to the discussion. Maybe you can get some insight from what some other parents have tried.
http://www.xmission.com/~winter/ubb/ultimatebb.php?/topic/1/3242.html

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We told Emma (now 8, diagnosed shortly before her 6th b-day) right off, talked about it (not to say I think a lot got through), and about the meds, and everything. She understands more now, as she's older and she can process it on the meds and generate, and ask, questions about it.

I take meds for asthma. We don't have a meds = bad attitude, so there was no worry about her feeling set apart or odd - Momma's lungs don't work as they should, so she takes meds; Emma's brain doesn't always act as it should, so Em needs meds to help her brain think and learn, and make it so Em can sit down and concentrate on cool things.

She describes not being on meds as "My brain is just..WILD!" (complete with crazy look on her face and hand gestures)

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I am appreciating this discussion, and want to add my own two cents' worth. Sorry, but I have the feeling this is going to turn long...
Our son had always seemed just a little "odd" - he was a hypersensitive but loving baby and toddler, and obviously extremely bright. Anyone professional we asked about it though, just told us he was "within normal range", and essentially implied we worry too much. Nonetheless, by first grade, it became obvious that something was very different, as he became more fidgety and active (including walking in circles constantly, esp when reading), more easily angered, and less able to deal with frustration, not more competent in socio-emotional fields. We still thank God that his first grade teacher had the courage to tell us that she was concerned, and that his continued propensity towards tantrums (worsening), and growing signs of depression were a big deal (not typical for a first grader - he was our first child, so we suspected, but did not "know"), and not something to be pooh-poohed.
We got all the wrong diagnoses first: ADD, ADHD, ODD (Oppositional Defiant Disorder), simple but chronic depression, etc. I remain grateful to our family doctor who suggested we take him to a pediatric neurologist when a psychologist insisted that he was "obviously" ADHD, and we should tell our doctor to give him Ritalin (yes, he said "tell her to give him a prescription for Ritalin"). The neurologist interviewed my husband and me for most of an hour, and after only about twenty minutes, he first brought up Asperger Syndrome. I was so relieved: I had wondered about it myself for some time, but was told "he doesn't have any speech problems, so it can't be autism".
The four years since then have been tricky and complicated, but he is doing much better than he would be without a diagnosis, and much better than I think he would be if we had not told him. We brought it to his attention almost immediately, by reading a fictional chapter book called Blue Bottle Mystery: An Asperger Adventure (by Kathy Hoopman, who later also wrote Of Mice and Aliens: An Asperger Adventure), from Jessica Kingsley Publishers (www.jkp.com).
The main character was older than Griffin was at the time (about eleven, I believe), but it worked very very well. Griffin got more and more excited as we were reading it, and the boy's similarities with him became more and more obvious. In the end, "Ben" was diagnosed with Asperger Syndrome. There was a palpable sense of relief in the book and for Griffin, as people in the book realized that Ben was not being naughty or obnoxious on purpose, nor was he in any way dense or "mean" when he accidentally said things out loud that he probably shouldn't have said (a big concern for our son). Griffin actually asked me when we were finished with the book, if he had Asperger's. He felt so much better knowing that there was a REASON he saw things the way he did, he had gifts and strengths he would not otherwise have had because of this condition, and there were ways to start compensating for some of his challenges as well.
We also started going through the workbook mentioned earlier (Asperger Syndrome: What does it mean to me? from REACHH in North Carolina). He enjoyed that too, and it worked especially well for him because he was quite young (almost seven), but more than smart enough to realize long before that he was very different, and anxious about what was 'wrong' with him. The book helped explain a lot of his triggers and suggest ways to approach discussing it with teachers and sympathetic peers. It is a little too simple for him now (at ten), but very helpful for him at the time.
We have run into teachers and others who have actually accused us of telling him too much (that he knows "too much" about his autism), because they think he is going to use it as an excuse for poor behavior, but we persist and he has teachers now who agree completely that knowing what is going on and why, and what he can and CANNOT do about it, is a huge advantage for him by now.
He has associated anxiety issues, and a possible bipolar mood disorder as well, but knowing about the AS has made it all much easier to deal with. He knows everyone is good at different things, and that most people have areas where they struggle as well -- he considers himself blessed to know where his struggles lie, and to have people around him who can support him in dealing with those challenges. He could not have made the progress he has without all this knowledge.
This also brings me to the "difference is not disability" track. He has remarkable strengths that come from his hyperfocus on certain areas, his sensory sensitivities, and so on. But they also make trouble for him at times in school. If he had not been "labelled" in first grade and eligible for an IEP because of it, he would be in trouble all the time, be considered merely a troublemaker, and probably suspended many times for tantrums beyond his control, and apparently disrespectful arguing with adults. How sad that it is necessary for him to be considered "disabled" to have understanding and flexibility offered at times in his education. I still struggle with this lack of patience for individuality that a general education system suffers under.

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you may tell him that no matter how 'normal' he wants to be; he will always be extra-ordinary, and that his gifts, however they manifest themselves, will continue to develop over the course of what will be for him, a wonderous lifetime.

i envy him his opportunity to flourish in an age of acceptance

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My son is currently 14 and in the 9th grade. He was diagnosed with Asperger's in the 5th grade.
After years of what we felt like was every diagnosis under the sun, and none of them really fitting him, the day they told us he had AS, was a day of great relief.
We still have things that we struggle with but his knowing and understanding has made the last 3 and 1/2 years so much easier and less stressful for all of us.
We finally had something that we believed really fit our son, and we had a way to work with our son. We told him from the beginning. He did not like the name and called it "Weird" for a long time. Last summer he was with my sister in a microbiology lab and a sweet lady was showing him how to use a electronmicroscope and he told her about AS and called it by name. My sister was surprised because she knew that he did not talk about it much. That was the break through. This past summer when he got a job washing dishes at a local resturant, he asked if I would discuss AS with his boss.
He has learned to adapt to some of the social issues that are important to him, and with work he plans to attend college in four years.
Start slow, as with anything else tell him only what he wants to know, point out his strong points that may be strong because of AS, as time goes on tell him more and help him understand.
My son is now comfortable enough with AS that he helps explain it to his teachers each year at the beginning of the school year and helps me to educate them.
Don't hold your child back, encourage them to excel in areas they can.
My son earned his Eagle Scout, in boy scouts in April, because he was driven by the drive that those with AS are driven by.

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