Having the diagnosis conversation with your child

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Have you talked with your child about his/her diagnosis? If so, how old was s/he? What made you decide to do it then? What did you say? How did it go? Do you wish you would have done anything differently?

If you haven't, why? (other than s/he is too young to understand)

And, as always, I would love feedback/ideas from adults on the spectrum who have lived through this scenario. I did post a couple of weeks ago on the general autism discussion board but if you didn't see it there and you are here now I would love to hear from you too.

My little guy is 5 and is very self-aware, but VERY sensitive when it comes to not being "right" (whatever he has decided is right in his mind) about anything. (lol! As I am writing this he is trying to re-fold a plastic playmat that came with a dinosaur set and is VERY concerned whether or not he has done it exactly as it was originally done in the box, just to paint the picture clearly) Therefore, I am afraid to put the "most people think this way, but some people think this way and you are part of the some people" spin on it. No matter how positive I try to make it I already know he'll immediately see himself as flawed and get depressed. The other night he spend a great deal of time crying because, "I like dinosaurs too much. Nobody else likes them as much as I do, but they are all I can think about and I can not stop."

Any ideas will be extremely helpful and I thank you in advance for taking the time to share them!

Smelena's son likes dinosaurs, plenty of people do.

My son was diagnosed when he was 7 and, at the time, old enough to hear the results. He also knew why he was in the diagnosis process. He wouldn't have cooperated if he hadn't.

For him, it was a relief to know. He already saw that he was different, and now he had an explanation. When you can tell a child that Bill Gates is suspected to also be AS, well, your child quickly feels he is in pretty good company. He now has a new standard for "normal," which is, what is normal for kids like him? Riding a bike? Age 9 or 10 is "normal." Can't tie a shoe? Totally "normal" as well. And so on. While it may be difficult in real life to find kids that are just like him, he knows that I find them on the internet every day, and he doesn't feel as far out there because of that.

My son was diagnosed at age 7 as well, and we told him matter of factly. That's just the kind of kid he is-factual. He has another medical condition he's had since he was 1 year old, and has always know about it, so this was just one of those things that we told him was just the way he was, and that's why he has a hard time in some areas, and in others he excels. It was also a relief for him to know why he was so unlike other children, because by then, he had realized it, at age 5 he was still clueless.

We have not told my 8 year old son about his AS diagnosis, but we have explained to him how he is different.

We talked with him about how everyone is different. We talked about how some kids are really good at sports, or good at talking, or really funny, or keep getting in trouble, or really good at video games, or know a lot about certain subjects.

We explained how (just like everyone else) he is really smart at certain things and needs to put more effort into learning others things - no one knows everything. We explained that his mother is really good at socializing but that he is like me. We talked about how some people go to college to learn about how other people think (psychology) or act in groups (sociology). We told him that there was a class like that for kids (ie social skills classes). We asked him to try it out and now he insists on going every week.

My son was 11 and was pretty aware of the whole process. The diagnosis came as a relief to him (and me) and when he asked me after we left the paediatricians office if it was a bad thing I said that actually I thought it was a pretty good thing given his gifts. As soon as I got home I went on the Tony Atwood website where he says to a child he's jsut diagnosed. " Congratulations, you,ve got Aspergers" I loved that! We then bought a book for him by Luke Jackson that the Paediatrician had recommended and its been a great resource for all of us. My son was really relieved as he'd felt for ages that he'd been living on a different planet and now he knows he's not the only one.

Our son is nearing age 13, and like GuyTypingOnComputer, we have not told our son about his diagnosis yet. That has turned out to be a good decision. He is NOT a factual-type kid on the spectrum. He has friends, although most of the friends at school are either diagnosed, or COULD BE diagnosed. His brother could have been diagnosed had the diagnosis been available when he was a kid (he is now married and in college). He has two grandfathers who very likely would have been diagnosed. We have a tendency as a family to value academics over athletics, and we often point out that our whole family is a little odd and don't really fit the "norm." We also point out that we like it that way.

I wonder all of the time when this will become an issue -- when should I tell him? Well, I think that it will come about naturally, as did the talk about "sex." So far, I don't really think he views himself as very different. We are lucky, in that the "cool" older kids at church tend to include him. He has some other church friends, and enough at school. We are probably going to tell him just as he is finishing high school, as we think that is when he will have experienced enough that he will see the differences in others, and not feel like he is radically different from others. We are also in a good position to be able to say that his brother most probably was on the spectrum, and he didn't know until high school age, and knowing really didn't make much of a difference. It explains some things, but he's just in good company with a good chunk of the rest of the family!

I have gone back and forth about this, and I have gotten advice in both directions. I think I am going to wait until he asks. He will be going through an evaluation process again in the next few months, and if he asks anything then I will tell him what he needs to know. He is also a perfectionist, and he is very sensitive and I don't want him to think he is different or there is something wrong with him, and I am afraid he will interpret it that way. He also doesn't have the language to have concepts like this explained verbally. I think he is perfectly capable of understanding, and I may feel differently if he had enough language to talk about it. At this time he doesn't. He's 7 by the way.

OK i'm not a parent but my mum told me when I was 11, just a few weeks after the DX.
I didn't actually know what the evaluations were about, I just thought it was a normal checkup thing.
I didn't mind too much as my mum mentioned people like bill gates and einstin and it made me feel better about myself.
so when you do tell him mention some famous people with it, it shouldn't seem as bad then.

we told both our kids their dxes after receiving the information ourselves, and after we'd had a chance to digest the information....i'd say maybe at the most, a week after finding out..........our son was 13 at age of dx, and our daughter was 8

I will add that we didn't really dwell on the term, "Asperger's." The focus was on how our son's brain works different, and that there is a name for this (although we also told him the name wasn't very important), that there are many others like him in the world, that this is how he was meant to be, etc. We emphasized the gifts and didn't gloss over the challenges. I also pointed out that many people are rather like a straight line on a graph; their level of skill at things may be rather even. But he is a jagged line, with things he can do very very well - much better than others - and things he has trouble with. It all averages out, it's just different.

Lol, it's been so many years now that I barely remember!

Main point being, he knew he was different already and seemed relieved to finally understand why and what that meant to his life. He totally bought into the explanation and was happy to hear it.

Have you talked with your child about his/her diagnosis? Not yet.

If so, how old was s/he? He is 9. We will do it soon.
What made you decide to do it then? He seems ready to know why he's a little different.
What did you say? How did it go? Do you wish you would have done anything differently? I'll let you know. :p

I do know that won't be telling him the diagnosis, just that his brain work a little differently than others. I don't want him walking around telling his friends that he has PDD-NOS. I do think it's a good thing to understand how he operates, to be self-aware, and to know that he isn't broken.

I would think the phrase "your brain works a bit differently" would be scary to some kids. I think it would have freaked me out as a child. But, maybe not.

I haven't gone into specifics and my son knows about Aspergers due to my reading, talking about it here and there, but I don't reinforce the idea because I don't know what purpose it would serve. If he said to me "Mom, what do I have? What's wrong with me? Or, why do I feel different?" Then, I might discuss it with him. I've brought it up when it's relevant like when we went for the reevlatuion a month or so ago, and I explained how important it was for me to support him, and get the proper diagnosis so teachers would understand how he learns. He didn't question it or want to know more beyond that, so that was that.

When he wanted to publish a book of his writings, I told him about Kenneth Hall (his published book) and he said "Only kids with Aspergers can do this" and I disagreed, explaining that wasn't true. I don't want him to think he's some kind of anomoly or put too much pressure on him, or believe that his gifts and aspirations are because of a diagnosis. He was who he is before the diagnosis. He was born with gifts just like anyone else.

my .02 cents.

Oh, I def. agree with that. I should have mentioned that my son is already aware that he is different and is having self esteem issues.

I was diagnosed first and so they already new about autism spectrum as I had been open about my thoughts on what was going on with all of us.

My 11 year old daughter was next and had a diagnosis of autism and she was ok about that and helped her to understand why she is a bit different to me and my other daughter, where as before she felt more bad about being different from us.

My youngest who is 7 got her diagnosis last a couple of months ago but she already identified with having aspergers so that was straight forward.

Some people have been funny with my eldest when she disclosed to them her diagnosis so she has learned already to be careful about that, as have I, these are all life lessons we have to learn.

The kids have been more sad about me having AS than they have about themselves as some people dont want to mix with us since they found out, I guess they are worried about their kids safety people can be very funny with how they view autism spectrum stuff.

Have you talked with your child about his/her diagnosis? Yes, he was dx about a month ago which is replacing a previous dx of ADHD. He knows that he gets overstimulated and we have both really struggled with it and I think he deserved to understand why.


If so, how old was s/he? 11


What made you decide to do it then? I never really questioned if I should tell him or not, just how. It's just the kid and me so we are a bit closer than we might be in a traditional family. I just try to make sure that what I tell him is age appropriate and not a burden.

Talk 1- The day after the initial dx.
What did you say? I told him that he thinks about things in a different way.
How did it go? I thought it went just fine.


Talk 2- About a week later after the therapist asked us to consider medication for his fidgeting.
What did you say? I asked him what he thought about the medication. He thought it was a great idea and wanted to try it. I asked him why and he said because it would make him normal. Yeah, so the first talk failed and we had another one. He thought he had a disease that needed to be cure, so way to go Mom. So I explained it again and made sure this time that he understood it better and that it is part of him like his hair color. He doesn't have a disease. There isn't anything to catch or to cure per say.
'How did it go? Much better. I checked for understanding this time (something I realize I have to do with new information).



Do you wish you would have done anything differently? I wish I would have made sure he understood it completely the first time.

I asked my son what he thought and he said, explain what it is but that it isn't a disease, but a part of you.