When and how to tell

Is there any research out there concerning when and how to tell a child about their diagnosis? I'm thinking that even if this hasn't been researched specifically in connection with ASDs, there might be something concerning other serious disorders that could shed some light on the matter. The reason I ask is that we recently shared that information with our 5th grade son. He's been struggling quite a bit socially, and I thought that knowing that there's a reason for his difficulties might help him cope. Instead, he promptly told his teacher that he couldn't do his classwork because he has Asperger's. We shut that down. I told him that it is *not* OK to use his diagnosis as an excuse for not doing things he's perfectly capable of doing. Now, though, I'm wondering whether perhaps he's simply too young to understand. Our 17yo (who also has Asperger's) is just now beginning to understand what that means for him. However, he's more on the autism side of the Asperger's spectrum if you know what I mean. I've noticed that IAN research isn't solely focused on medical issues, and I was wondering if something like this might not be something that could be investigated--both from the perspective of parents and that of adults with ASDs.

Sue, this is a fascinating topic, and an important one. I will definitely convey to the research team that it is of great interest to families. I do think older individuals with ASD, as well as parents, would have a lot to contribute to our understanding of this.

Recently, my son with Asperger's appeared on a panel with several other teens on the spectrum at an Autism Society of America event. Parents of younger children came to ask the teens questions, and one of the big questions was: "When did your parents tell you you had autism/Asperger's? How did you feel? Did you wish they'd done it sooner or later? Do you wish they'd done it a different way?"

Which is to say: you are definitely not alone in this concern. I think this question lead to the most vigorous debate and interaction of the whole evening. Some parents had shared the diagnosis when there was a crisis - and the child did find it a relief. I remember one boy who said it changed his whole life. He embraced this new identity and stopped worrying about "not fitting in." He had been nearly suicidal before. Others were surprised at the diagnosis - my son said he had no idea he was different until I told him so in late elementary school at a crisis point. The topic of "using it as an excuse" also came up! The parents did struggle with that somewhat, trying to decide when the ASD was presenting a real barrier and when it was being used just to get out of whatever.

Another big question put to the teens was whether they reveal their diagnosis to others, or how they decide when to share it.

I just wanted to share some advice I found (courtesy of another mom on a support group) that I find useful. It's from Dr. Tony Atwood (I hope I spelled his name properly). I've found a lot of information in his books about Asperger's Syndrome too. Anyway, here's the link to the article about when and how to share a diagnosis with a child:

http://www.ahany.org/ShouldYouExplainTheDiagnosis.htm

Sue

I have been struggling for years to get someone to listen to me about how I thought my son had Aspergers. Just as of Monday we OFFICIALY received our diagnoses. My son, now 8, is thrilled. He feels validated.
Aspergers is a very open topic in my family. My 18 year old brother and 8 year old neice also have the same diagnoses. Jackson, my son, told the Dr. the other day. "I know I have Aspergers b/c I am just like my Uncle Sean."
I can't even imagine having the diagnoses and not letting him in on the information. Not saying that it was wrong for you. Every situation is different. For example, My Mom knew for years that my brother was Autistic. They, the Dr.s, had been medicating him for years for Bipolar disorder. After almost 10 years of mood swings, changes in meds, and distructive behavior she had the Dr.s take him off of all his meds. He now hardly takes any. Why? Because he is not Bipolar is has Aspergers. A light shined on my brother that day. All those years in termoil and now he feels like a new person and he is doing great!
My son knows he is different. I think if I kept him in the dark even for a year it would hinder his development.
We too have already heard the excuse "I can't do that, I have Aspergers" We quickly corrected that.
I am at the piont where I am rambling.
I hope you get the answers you need and that your son is doing well.

~Anilise

Hi Anilise, and welcome to IAN.

It is good to hear that your son has received the Asperger's diagnosis, and is so comfortable with it thanks to his family's experience!

And, Suetois - thank you for the excellent link to Tony Attwood's advice on when and how to tell a child about the diagnosis. He is considered a world expert on Asperger's. Have you seen his article on IAN about high functioning autism and romance?

http://www.iancommunity.org/cs/articles/relationships

Hi, Connie. Yes, I did read the Attwood article about the difficulties older children/adults have with romantic relationships. Our version of that problem right now is that our recently-turned-18-year-old is dealing with sloshing hormones. At the same time, he 'feels' like a much younger child. By 'feels' I mean both to himself and to us. It's a confusing situation for all of us. Probably the most obvious problem is that he has discovered Internet web sites. That wouldn't be a problem since I think that's developmentally appropriate (I would expect most teenaged boys to explore that), except I worry about the fact that his interest has exposed my grade schooler to some pretty nasty stuff. I'm also concerned because our older son really doesn't have the social/emotional skills to process what he sees appropriately. I worry that he'll think what he sees is "normal" and appropriate, and it will affect his behavior.

On top of all that, ever since he was diagnosed as a child, I've worried about how he would achieve some sort of long-term emotionally satisfying relationship. I think most people need that and want it, but people with autism have a much harder time finding it. It's the area of life that demands the most of our social skills. What if it never works for my son, and he's stuck on the outside, looking in? That's a heart-breaking thought for a parent. I know that I'm borrowing trouble since it's not an immediate concern, but I also think it's a realistic thing to be concerned about. And then there's the whole question of when my involvement and support for some aspects of his life becomes inappropriate. Every parent has to cut the apron strings someday, but it's a lot harder if you're not pretty sure your child is going to be OK without you.

Sue, I think many parents have the same concerns...and some individuals with autism, too. I was recently at the Autism Society of America conference, and there were many books at the various publishers' booths there on the topics of dating, romance, or marriage for people on the spectrum - so there are clearly many people tackling these issues, or writing about their experiences.

I know what you mean about the internet issues, as well. I recently spoke with the facilitator of an "adults with autism" support group. She said they had to ban discussion of internet porn, because a couple of the guys were so obsessed with it, and a couple of the others were so upset by it.

It's a bit of a danger since many teens with autism spend so much time online - and, as you said, may not be able to judge how much is too much, or that what they are seeing is not really the norm for human sexuality.

One thing I have heard from several adults is that they like to have the guidance and feedback of a therapist, especially if they are high functioning enough to be able to self-reflect. Whether it's a romantic relationship or how to manage in the work place, they have told me they benefit from extra, explicit feedback about what they said/did or plan to do/say. What did they want to happen? How will people respond, and it is the response they wanted? Etc.