should a child diagnosed with Asperger be told?

Post Reply New Topic

should a 13-year old be told he/she has AS? I'm new to this site and I'm new to dealing with Aspergers so I'm trying to learn as much as I can.

I think yes. They're old enough to know. It could give them some relief. I wish I knew at 13. I left school, refused to be home schooled and then at 15 had to somehow get my life back on track. Fortunately I have got my high school certificate and have a job.

I think you should hold off and let your kid figure it out on his own. When he starts questioning why he's so different from anyone else then you should tell him. I have autism and I denied it most of my life. I was told my whole life by my family that I'm perfectly normal and there's nothing wrong. I started putting 2 and 2 together and I realized something wasn't right. I started questioning why I didn't have as many friends as normal people and why I spent most Friday and Saturday nights at home sitting in front of the computer rather than hanging out with people or going to parties. That being said, in many ways, I'm glad my parents did what they did. It's how I got as far in life as I've gotten. If I thought I was autistic, I wouldn't have had that confidence to do things. There is still a part of me that wishes I found out sooner. It took me until recently to come to terms with my autism. I was diagnosed at age 3 and am now 18 years old. If you have questions, feel free to ask, and I'll answer them to the best of my ability. Thanks and good luck.

Thanks. It seems to me that this is something he should know but it's difficult to know how he'd respond - and if it is the wrong thing to do, the damage will have been done and can't be undone.

I wish that I had known at age 13. Of course the diagnosis wasn't available until after I was out of college.

At 13 I knew I was somehow "different" from the others, but it wasn't something I could put my finger on. I knew I was bullied; I didn't know why. I knew that I wasn't comfortable in social situations like everyone else; I didn't know why. When I finally found out about Asperger's at age 41, I literally cried - finally understanding "who" I was.

So, yes, based on my experience, I would say that knowing is a good idea. It will help give a label, a sense of self-identification, etc. Just be cautious as to how you talk about this. It shouldn't be presented as being a "problem". Asperger's is part of the overall spectrum of personality types. Emphasize the positives and learn what sort of support that you can provide.

They'll have to know eventually. A lot of people regret not knowing when they're young. A lot changes when someone with AS becomes a teenager too.
Some find out their autistic or have AS and prove to themselves and others they can achieve great things. There was a photographer who found out he has AS and he said 'I'll show them, I'll win an art award." And he did.

Question: how does someone that age not know? Was he officially diagnosed? I can't understand how someone wouldn't know if they were diagnosed. 'Mum why did I do that extremely long test?'

Eh, just see how much he struggles. Just make sure no one puts stuff in his head about anything negative to do about AS. Kids can be pretty cruel about it.

Mom told me at age 12 when I was diagnosed. I wish I didn't know then because I wanted to be normal so much. Knowing about it didn't really change anything until my mid teens. I didn't want to accept I had it.

Yes. Children should not be lied to in most situations. It doesn't "save them" from anything. Kids are not as dumb or as delicate as adults seem to think they are. If you tell them stuff in a matter-of-fact, polite way they often listen and are not as likely to freak over something. JMO, but I did work with kids (ages 4-14) for about 10 years so I think I know something.

My tendency is to say tell them. If they don't want to tell everyone in the world they don't have to. If they never find out until much later, they won't know how to advocate for their own needs. They'll miss out on a ton of self understanding that will help them start working on their weaknesses. They'll always know they are different. My experience was that to accept myself, I had to understand myself. Its not that I didn't know some of the ways I was different, its that I couldn't put a name on them and think about them in a coherent whole. Now not a day goes by without me understanding that large parts of what happen to me are shaped by my AS traits. Knowing that now I can deal with it. Before I'd just angrily wonder why certain things in life just never worked out for me the way they did for other people.

Tell him. If you don't, he'll probably just keep quiet about it, and on his own, develop excuses for why he's different, deny he's different at all, or try very hard to be normal, and inevitably fail. If he knows, he'll be able to more firmly establish his identity without all that pittius wondering.

PS: My spell checker is broken.

Yes. At age 15 my psychologist never suspected my AS. I think if she had told me I would have been more accepting of myself as she would (had she known ANYTHING) have told me it's OK, etc.

Yes

Sorry this is such a long reply, but my feelings are strong, and hey, we aspies tend to be a bit verbose...

My initial gut response was to shout! But I'll try to be more polite than that, especially because everyone's experience is different.

Sadly, for me I was not only undiagnosed, but I also came from a broken home with neglectful parents. (In the words of three of my previous psychologists, my parents were "severely neglectful.") You clearly are supportive and loving. You show a great deal of love for your son simply by asking this question. When I see parents of kids on the spectrum learning and fighting for what's right for their kids, I feel warm and hopeful inside, and I thank you for that! Regardless of your decision, your boy is very lucky to have a parent like you who's willing to put so much thought into this.

Still, my answer is emphatic. Tell him! I'm trying hard not to project myself on your son, but my experience in school and among kids my age (as well as the teachers) was horrible. Autism and Asperger's make it extremely difficult to function among peers, and a thirteen year-old boy is entering a time when social function is critical. I was a social failure. And how could I explain that? I tried like hell to fit in. I tried to emulate the popular kids, but that only made me look more pathetic. Eventually I became convinced that the problem was me. I was a fundamentally screwed-up and loathsome creature. Even kids who were seen by others talking to me would later get picked on for being friendly with me. It was HORRIBLE!

Finally we moved, and I changed schools. Finally I'd have a whole new set of classmates who didn't already loathe me. But before long, it started all over again. It continued through high school, and on into the workplace. I was convinced. I was worse than unworthy, and who did I have to blame but my loathsome self? I was not only unworthy of friendship (forget about love!), I was "anti-worthy."

And it was all my fault until last September, when I was assessed and learned about Asperger's. It was possibly the most joyous event of my life! I suddenly made sense! I wasn't loathsome; I was a typical person with an autistic spectrum disorder! Just knowing that there's a name for it and that it makes sense means my life-long self-loathing could stop. (It hasn't stopped suddenly; it's a process.) I can't express in words what that's meant to me.

My story of self-loathing might be a bit on the extreme side, but self-loathing is fairly common among those of us on the spectrum who haven't been diagnosed. And it's so unnecessary!

My only other piece of unsolicited advice: Focus on how his brain is wired differently, not incorrectly. A lot of us here wouldn't trade being autistic for the world. It comes with plenty of advantages, such as outside-the-box thinking, and often special skill areas that are well above average.

You love and support your son very much, and I truly believe that your deeply personal and well thought-out choice in this matter, whatever it is, will work just fine for him. With you in his corner, he's got very little to worry about!

I think that you should tell him, as soon as possible. If you don't, he might think that there's something terribly wrong with him.

The facts are kind, and the denial of the facts
can be very unkind indeed