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At what age did you tell your child their diagnosis?

post #1 of 10
Thread Starter 

My DD, who will be 7 next month, was diagnosed with Aspergers almost two years ago. She is a very happy child (aside from the inevitable tantrums) and I don't think she knows that she is different. She is in a special ed class but integrated into regular ed for a couple subjects, and seems to make friends wherever she goes. We have a blended family and a son who is the same age. It wouldn't surprise me if she thought HE was the one who is not normal because he talks non-stop and drives us nuts sometimes.

 

I'm wondering when we should tell her about Aspergers, how it makes her better than most people at some things, and awkward at others. Our son knows that she prefers to play by herself sometimes and has trouble expressing her thoughts, but that's it. At what age was "Asperger's" first described and discussed in your home?

post #2 of 10

My son is 8 1/2 and he has known about his Asperger's since right after he was diagnosed at 5. I wanted it to be something we could discuss openly and without any shame (sort of like adoption, I think), so once we had processed it, we told him. We told him that the psychologist we worked with had told us that his brain works differently than some other people's brains and it makes some things easier (he has a great memory for facts) and some things harder (social relationships). We have a couple of children's books on Asperger's (none great, I am afraid) and we discuss it as a matter of fact (although not super frequently-- he is high functioning enough that it doesn't come up a lot - fully mainstreamed, never qualified for an IEP, etc).

 

My older daughter worked as a peer playmate for a little boy who was more affected by his autism and my kids say that that child has "spicy autism" and DS has "mild autism." I thought that was cute -- and hopefully reflective of how it was handled in our family.

 

Good luck with whatever you decide to do.

post #3 of 10

My DS was only diagnosed with ASD (Asperger's type) this year.  Before, he had a Dx of NVLD with Tourette's spectrum disorder and anxiety (still has anxiety and OCD as separate diagnoses).  I actually did explain diagnoses as best we knew starting from about age 9.  We only used basics at age 7 (like "you have a lot of trouble with handwriting so this person is helping you with it) because that was where he was at.  Generally, telling him about his diagnoses at his level has been helpful, and for him, at age 11, he's completely involved as a partner in his own therapy, right down to getting him any answers about medications or finding him research articles if he asks.

post #4 of 10

My DS was diagnosed with autism a week after he turned 3.  We have never kept this diagnosis from him.  Once we got the official diagnosis, we became very involved in the autism community, attending special events, playgroups, support groups, etc.  DS has Hyperlexia (early reading combined with difficulties processing verbal language) as a feature of his autism, so he started reading at age 2, before he could even talk.  We had books and articles about autism all over our house as DH and I tried to understand this new diagnosis.  So DS has always been exposed to the word “autism” and known that it is something that applies to him.  I don’t think we could have hidden the word from him if we had tried.  As DS grows, we explain more and more about what it means.  In reality, the hard thing hasn’t been telling DS that he has autism; it has been explaining to him that other people do not have autism.  DS is 7 (almost 8) and knows that autism means his brain works differently from other kids.  He knows that it makes some things (like reading and math) easier for him and other things (like conversations and games) harder for him.  Still, it’s a gradual process of him learning what autism is.  Now he is at an age where his differences from typical kids are becoming more obvious, both to him and to other children.  So we’ve been doing a lot of work helping him understand these differences.

 

DS also has albinism, a pigment disorder that always involves some degree of vision impairment.  DS’s vision impairment is relatively mild for someone with this condition, but it does have significant impact on his life, both in and out of school.  DS is aware of this condition too.  He knows that albinism is why he needs to protect his skin and eyes from the sun and why he had difficulty seeing some things, even with his glasses. 

 

There are several reasons why we never shielded DS from his diagnosis.  One is that it simply wasn’t practical, since we attend special needs events and have books/articles in our home.  Another was that by introducing the terms for his disorders early on we could avoid the shock of discover later.  We feel that it is better for him to come to full knowledge and understanding gradually over time.  In a way, this isn’t much different than teaching DS about our religion.  He knows that he is Catholic and enjoys being a part of the Catholic community.  He understands that not everyone is Catholic.  But he doesn’t understand everything about being Catholic. Instead he learns the faith gradually.

 

Another reason we are open with DS about his disorders is that we work with him on self-advocacy.  Part of DS being able to advocate for himself is him understanding his own needs and how these needs differ from those of other kids.  Even at his young age we have seen him do basic but powerful acts of advocating for himself.  He was even able to get the school to make changes that I had spent months arguing for with no success.  I was so proud of him.

 

(Sorry for the length.)

post #5 of 10

We told our kids about the dx once we processed it ourselves. It's an open discussion in our house and accepted as part of who we are. 

 

 

post #6 of 10

When I realized that DD (now 9 years old) was almost certainly an Aspie (this was last summer) I shared that information with her. I actually showed her the book I'd read (Tony Attwood's Complete Guide to Asperger's Syndrome) and the part that listed all the "pluses and minuses" that people with AS tend to have. DD's eyes just lit up - she seemed so...excited? happy? amazed? I can't really describe it except that it seemed to give her a huge amount of validation for all the struggles she'd experienced. She proudly tells people she is an Aspie, even though we have yet to get her evaluated (she's on the list, though I'm not sure she will "pass" as she has some good coping skills). I think it answered a lot of questions she had that *I* didn't know she had. It was a relief. 

 

With DS, he is only 7 and has less comprehension than his older sister does. He had already figured out that he was "different" from other kids in certain ways, and when we got him evaluated we explained it to him in that context. He now knows he has autism, though it's not something that seems to register on his radar much, so I honestly don't know how he feels about it. 

 

But I was adopted and always knew about it for as long as I can remember. So I felt that this sort of policy was a good one. Honesty and openness. 

 

Oh, and ensuring that it's not talked about like a "bad" thing. I'm proud of who my kids are, and there are some definite joys and positives with autistic kids. I think that attitude helps a lot.

post #7 of 10
Quote:
Originally Posted by Piglet68 View Post

Oh, and ensuring that it's not talked about like a "bad" thing. I'm proud of who my kids are, and there are some definite joys and positives with autistic kids. I think that attitude helps a lot.



I think that's really important.  You don't want to talk about autism as if you are expecting your child to feel bad about it.  You really need to hold yourself together and let your love shine through. 

post #8 of 10

I told my oldest daughter right away but she was in 5th grade when we finally got the dx she is now in the 7th grade.

post #9 of 10

Monday night.  Which was the night before he received his diagnosis of Aspie.  I wanted to explain to him what was happening the next day, the fact that we were wondering if he had autism, and a bit about why.  I wasn't sure he was listening or understood when I explained, but the next morning when Grandpa showed up to watch younger brother he said "I'm having an evaluation today.  There's nothing wrong with me, I'm not sick.  My brain works different than some other people's.  The doctor might help with things that bother me, like MOM WASHING MY FACE!"  :lol  So I guess he was paying attention when I explained it.  This from a kid who often can't put more than a 5 or 6 word sentence together without stumbling.  We had a honeymoon period of 2 days where dh and I were super patient with the loud nonverbal sounds, the touching of other's faces to get a big reaction, and the huge anxiety over stuff.  And although he was still himself, he really seemed happier and more content.  But today we're kinda back to the normal daily life and frustrations, which is why I realize that the dx only confirms what we experience, but doesn't actually give us any tools until we follow up on the referrals for help.

post #10 of 10

It was always being discussed around my son- his doctors, therapists etc mentioned it all the time... plus he was reading before his dx and started aba somewhere with a big sign that said "Autism Treatment Center" so we told him at four. I just told him "Some kids have blue eyes and some kids don't. Some kids are short and some kids are tall. Some kids have autism and others don't. It is not good or bad, it's just part of who you are like your hair and your eyes and your smile." He was newly four at the time. 

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