When should a child be told about their diagnosis?

Post Reply New Topic

If your child is old enough to be aware that he is different from other children, then you are not protecting him from pain by keeping him in the dark about his disability. You are in fact, increasing his sense of isolation and poor self-esteem by negating his feelings and not acknowledging his difficulties.
That's my belief.... We told our son when he was 8 years old and he has embraced himself (and all his quirks!) ever since.

Good luck!
Joanne

As soon as possible, I say.

I just always keep it in dialogue. My children are very young, 6 and 4, so they don't really understand what the diagnosis is or means. But the important thing is that it is talked about, just as matter of factly as anything else. Hiding it, waiting to tell them, sort of implies that it is a negative thing. I decided immediately that I would never treat the topic in that manner.

I waited a whole week after receiving the dx before telling my son, also 8 yrs old.
He was having just the worst time in school. No friends. Confused. Couldn't do the work. His skills were/are just backsliding tremendously and he was obviously hurting.

So I knew that he had to know. Because otherwise, he was going to just think he was a badly behaved, unlikeable, stupid kid.

Funny story. I told him he was a purple person. I drew pictures and outlines the characteristics of purple people.(Aspie)
I told him most people are blue (NT), and labelled their characteristics.
I told him some people are pink (Autie).." "
Then I told him some people are kind of in between, they're purple..." "

He, actually, was very happy and RELIEVED. Some of that stress and anxiety just melted off his face.
He was like "ohhhh, that's why - - - "

Then I told him he wasn't the only one, there were lots of purple kids out there. They just weren't in his class.
Haha, and he wanted to meet them right away!

And I'm working on that.

But now he has an internal knowledge "buffer", when he goes to school and a kid calls him weird or says they hate him, or a teacher gets mad because he isn't "getting" the work. He knows that it's because they're blue, and he's purple, and they don't "speak purple" and he doesn't "speak blue" - so things get mixed up.

He also knows that I KNOW he's not trying to be difficult, but that he's being honest - he really doesn't "get" it. So he knows I'm on his side, and that he can explain what went wrong during that school day and I won't get mad at him for "being wrong", instead I'll do my best to explain to him what happened.

And yes, I told him the real names for the colours, but he can't remember them as well as he can the colours.

So yeah, tell him. Do it easy and clearly, you're not telling him that he's got cancer or anything, you're only explaining that you and the Dr. have found the reason why he's had trouble with x and y and z.

It's called Asperger's Syndrome and if we switch a few things up, and work together, life can become easier for you now.

Vivienne - I love your analogy to the purple, blue and pink people! Thanks for sharing.

When? I don't remember when I told my son it just came out one day. 10? He said something and I said to him it's "your Autism" and we went from there.

I am really glad to hear this discussion because I have wondered the same thing. My daughter is 7 and was diagnosed two years ago by the school district neurologist. However, her IEP focuses mainly on her ADHD which they felt was more of an issue. I actually am meeting with them this week to discuss this because she has been bullied a lot this year, and I feel like they were missing the point... a lot of the time ADHD symptoms are actually misdiagnosed manifestations of AS, which I want them to address more specifically.

I have no question that she (and I, too, although undiagnosed as of now) do have AS, even though she is extremely social (many Aspie girls are from what I've read). In fact she is really obsessed with making friends, she hates to be alone and will do anything to please others, she has no social boundaries. And for the most part, MOST of the time, she is pretty high functioning and able to blend in. Her quirks are subtle, but definite and as she gets older they are more visible. You can write off a younger kid's quirks more easily as just naiveté or immaturity, but at age 7, kids start judging each other more and developing a social pecking order.

I have never told her about either of her diagnoses. I talked to a lot of people about this, and everyone told me "it's not necessary for her at that age to know" because it would make her feel weird, or different, or cause her to use it as an excuse to misbehave, etc. Now that she is getting older I feel she really needs to know. I have, though, told her that she learns things differently but never really gone into specifics. I really want to avoid her labeling herself, or using her diagnosis as a crutch. Also, her dad does not even accept the diagnosis (or even understand what autism is... BTW, I am not with him and he doesn't have much to do with her, but still is very vocal about his feelings on the subject).

Now that she is getting bullied for being "weird" and a "baby" at school and even her friends are starting to dissociate from her socially, I feel like I really need to explain to her that she is NOT weird but has this thing that I have too called Aspergers (I am so positive of that! She was diagnosed for the same things that I have... like wanting to read encyclopedia type books as bedtime stories, memorizing maps and nutrition info labels obsessively, has no sense of social context, etc). We are really like two peas in a pod (or aliens from the same planet). I want her to be able to stand up for herself and also educate other kids about neurodiversity but my greatest fear is that this will further cripple her or cause her to be labeled as different. Honestly, not all kids think she is weird, but as she gets older, more definitely do.

I guess, hearing others here, maybe I should indeed tell her.