should a child diagnosed with Asperger be told?

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I hope that I'm not too late to join this conversation.

I am a parent of a 6 year old with autism. My personal belief is that it isn't information to be withheld and I don't understand when parents choose not to tell their children that their difference has a name.

I think withholding indicates some degree of shame about it. I think it's best to normalize autism, and embrace it so that the child feels like it's acceptable and workable. It's a good idea to focus on the positive aspects of autism such as the ability to concentrate, the unique view it provides, attention to details, etc... and whatever is unique about your child.

The sooner that the child can accept who they are, the better I say.

And you, the parent, leads the way. If you are still in the grieving stage of learning that your child has autism, and don't know much about it. I would hold off and continue to research and find a place of genuine acceptance before talking to your child about it. Set the tone for embracing autism.

The more you learn, the more you are apt to view autism positively. Read everything by Temple Grandin and Tony Atwood--read anything you can by adult autistics.

It shows a lot that you came onto this site to ask the opinion of people who have autism.

Good luck!

My son was diagnosed at age 6.5, and at that time, he wasn't ready to have that conversation. I tried a few times, but he would say things like, "Yeah, yeah, whatever. Do you remember that Doctor Who episode where the cybermen and the daleks were arguing with each other?"

Finally, when he was 11.5, I was able to tell him. The response was pretty much as before, but at least I was able to mention it fully. At this point in his life, he's too busy thinking about Warcraft map editing and the TARDIS to be brooding over how and why he's different.

Bottom line is, you know your kid best, so let your instinct/intuition be your guide. At 13, I'd expect that it's best to tell him, but each kid is different.

For me, the hard part, aside from keeping his attention, was figuring out how to phrase it in a way that lets him know that he is not defective. He has almost no patience for people waffling on about things other than his special interests, so I knew I'd have to make it concise and to the point, but not inadvertently make it sound like a negative thing.

Good luck!

My parents withholding information of any sort from me only made me trust them less (if that was possible) when the information finally came out. What possible benefit could there be to him NOT knowing?

That's a key distinction though, they do know, and every day they do not disclose is going to fuel the boy's careful Aspie analysis of "WHY NOT?" The only logical answer being: It's because I'm defective and they were trying to protect me from the awful truth. You certainly wouldn't keep it a secret if it were a gift. He already knows he's different, there's no way he couldn't - he's already had to deal with bullying, to the point of being removed from the school system for his own protection.

I do wonder sometimes if knowing at that age would have simply given me an excuse for not trying things that were hard, using AS as an excuse. What I keep coming back to is - what I couldn't do, I couldn't do. No matter how much encouragement or pressure I got, none of that ever gave me the magic power to 'push through'. Even in High School, I remember hating the fact that I'd ever been told that stupid story about The Little Steam Engine and his obnoxious "I think I can, I think I can" mantra, because it was BS. Positive thinking didn't change who I was, or make me less clueless and awkward in any way.




That's a good point - the best time to talk about it for the first time would be at a moment when he's just accomplished something positive, that can be connected to an Aspergian trait. So you can point to that and say "You know that great thing you just did? That's one of the things that people with AS are known to have a better knack for than most people, so in several ways, AS makes you very special." The drawbacks already make themselves felt on their own, talk about them, but don't dwell on them too much at first.

Things to focus on: Autism is a condition, not a disease. It's a type of person, not a defective person. It causes weaknesses in certain areas, but offers specific strengths as well - there are some well-known historical figures suspected of having been Autistic. Everybody has things they're good at and things they suck at - the advantage you have in knowing that you're Autistic, is that you know what your weaker areas are and there are ways to learn to compensate for that, though those weaknesses will likely never completely go away. A lot of people spend their lives not ever having any clue how to improve their weaknesses. Some people never even notice what their weaknesses are.




Difficulties talking about things like that I believe is also part and parcel of our condition, Its very hard to admit to those close to you that you feel especially weak and vulnerable and stupid, so we keep it to ourselves and let it fester into full blown depression and crappy self-esteem. I know a lot of folks here hate Rainman, but one of the first things I noticed about Raymond Babbit's behavior in that film was his avoidance. Every time someone asked him a question about something that made him uncomfortable, his stock reaction was to immediately go into a stim, look at the floor and say simply "I don't know". That really struck home to me, because I'd been doing it all my life. It was one of those eerie things that made me suspect I might have Autism years before I had any idea what AS was. Point being, some accuse us of being unfeeling, but the truth is, we often have a really hard time expressing feelings, especially when it comes to admitting an inadequacy or vulnerability.

Seems the general consensus is: tell him and don't waste a lot of time getting around to it, or it's just going to seem like you've been ashamed to talk about it. While there's some argument to be made for allowing him to feel 'normal' for as long as possible, even reviewing my own teenage years, I have to say that ship had already sailed by adolescence. By the time I was 13-14, I was waaay beyond having any tiny lingering doubt that I was not like everybody else. It was at that age that I began to tell people I felt I was some sort of alien changeling, deposited on the Wrong Planet. Knowing I was Autistic couldn't have made me feel any more alienated. Would it have made those years less depressing? Probably not. Being a teen with poor social skills sucks any way you look at it.

One other thing: Be creative about how you broach the subject. If you just sit him down and unload, it's going to feel like a lecture and he will likely shut down and tune you out. If it sounds boring and stuffy, he's not going to want to focus on it and once he gets a bad taste in his mouth about the subject, he's never going to want to hear about it or admit to it in any way. Spark his curiosity. Make it sound interesting. Talk about Einstein and how some psychologists think he may have had a type of Autism*, then list some of the major traits of AS and say "Hey - that sounds kinda like you". If you get him intrigued, he'll want to know everything there is to know about it, at which point, he'll likely come to you and say "I think I have this." Problem solved.

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one reason I think they're right about Albert - an interviewer once asked him why he wore the same brown suit every day. He told them he didn't - he had six identical suits, so he wouldn't get stuck wasting time every morning trying to decide what to wear. I'm guessing he also picked that particular suit because it was very comfortable. It always looked that way to me. It certainly wasn't beautiful or stylish.

I would.
If it was me I'd want to know because I wouldn't information to be kept from me that was about me. I found out as soon as I was diagnosed when I was 11, I accepted straight away. But I did go through a denial when I was 14-15 but I'm over that.

I would definitely tell a 13 year old. First, he has been evaluated, so he surely has some inclination that something is up. Second, many (if not most) people on this site have found that the diagnosis was helpful. By identifying the problem, they were able to focus on accepting what they can't change and finding solutions for things they can. It's hard to develope coping skills when you don't know what you are coping with.

I haven't yet told my 9 year old son about Asperger's, but we have explained to him that he needs help with social skills, much like some kids in his class need tutoring with subjects such as mathematics. He has spent the past few years in weekly social skills classes--we call it a "friends group" where he learns about how to be a friend.

There are two reasons we haven't told him about the "Asperger's" label yet. First, we are giving him the help he needs for his age. Middle school is likely where HE will start focusing on how and where to fit in. Second, if we tell him now, he will matter-of-factly tell EVERYONE he comes in contact with. Other than his IEP at school, we don't go around labeling him to other kids and adults.

I would definitely tell a 13 year old also.

My son was diagnosed in the 3rd grade. We told him in the 4th grade very simply as this is what he has. We have then built on it explaining to him over the last year that some of his traits are due to the AS such as asking a ton of questions, feeling anxiety, having a hard time falling asleep, not being aware of his surroundings, disorganization, and lately that he waves his hands while talking. He also understands that due to his AS that he has a hard time knowing when some things he says in inappropriate.

He is now in the 5th grade and it has been great that he knows. Everytime he has a new teacher or substitute for school or swimming, we are able to let him help us explain that he as AS and will ask a lot of questions. This helps teachers understand his quirks and cuts down on his anxiety overall.

I don't have time to read the thread right now, but to the OP. YES. For the love of God, a thousand times yes. Had I known as a child what this was all about, I don't think I'd be a suicidal hate-filled creep of a man today.

Hi all
Thanks for all your posts and heartfelt advice. I'm actually the mom of the 13 year old in question, and the (lucky) wife of mjstat. It's been a long road for me in all of this, as my son's dad and I spent the first 9 years of our son's life trying to address what appeared (according to the "experts") to be a sleep disorder. When my son was finally diagnosed with Aspergers it helped in some ways, and hurt in others. Part of my hesitation in telling my son he has Aspergers is my fear that he will obsess about the label, and what it means, and will go into a depression, something we've seen him do more lately. Also, I fairly certain that my ex, although an involved and caring dad, will not support me and my son's stepfather if we do actually inform him of his technical diagnosis. I've been very direct with my son about how his brain is "super smart" and processes things differently than others, but have hesitated giving him the proper terminology because of 1) my ex's refusal to use the term and 2) my son's tendency to internalize and obsess about titles. I am leaning toward telling him, but I worry that it will make him feel even less sure of himself. The level of guilt and pain that I feel for him, for not finding his diagnosis sooner, for not being able to always know what he needs, can be paralyzing. Both my son and I now have the support of my new husband, who is marvelous at getting me to continue on the path that is best for our son.

thanks to all of you for sharing with us, in particular those of you who are AS. I can't tell you how much it helps me to read what you think, to see how you feel, and that my son, and we, are not alone.

Ah, see, when I learned I had Asperger's, I obsessed about the label, became fascinated with psychology, learned a lot of strategies that other people used to work with the Asperger's cognitive style, and learned enough that I was able to return to college after my major burnout... So, being fascinated with autism is not at all uncommon for an autistic person; but there's no particular reason why it would have a more negative effect than any other fascination. Finally learning about myself was such a relief.

The one thing you might consider "negative" about my fascination with autism was that once I learned how useful they were, I let myself do more stereotypically "autistic" things that I had done before, but been shamed into stopping, because they weren't "normal". For example, I deliberately built routines rather than trying to do things on the fly like typical people do; I learned to choose more comfortable clothing, and to wear big dorky sunglasses to keep the sun out of my eyes. I started carrying a pebble to rub; I cut my hair very short so it wouldn't tickle my forehead... I let myself rock or tap my fingers without shame, since these movements helped me think better especially when I was doing my homework. I learned to ask for help, and to prioritize my time, and to accept that I only had so much energy to spend, and that it was okay to say "no". These are new coping skills that can look odd but have increased my effectiveness at school, and I really think that there are so many more important things than not looking odd that it's a worthwhile trade-off.

everyone seems to react differantly when they find out they are diagnosed with anything. however these reactions are only temporary. the effects of not knowing can be permanant.

Yes. I read accounts all the time of people who had a diagnosis as a child but their parents never told them and they admit to being so angry with their parents for not telling them. My moum told me as soon as I was diagnosed at seven or eight but it went over my head but I understood more and more as I grew older. It never phased me and I never wished to be "normal" but then my parents pretty much always embrassed my uniqueness and said that anyone who thought otherwise could basicaly go jump in a lake.

If I found out that my parents knew and didn't tell me I would just lose it. Same if any of my friends suspected and didn't tell me. Things would get real ugly real quick.