Gifted Issues Discussion homepage Forums Twice Exceptional Telling family about a diagnosis

DH is uncomfortable telling people, especially his family, about DS's ASD diagnosis. I think it's important we do (D'uh, but especially because I think it might give us an excuse to make some firm rules about stuff like not changing plans 12 times or comparing certain behaviors to other kids').

I'm looking for some Useful Things To Say to make him feel better. I suggested he read some of Temple Grandin's stuff, because he seems really focused the "d" word, and I think having a sense that people with ASD don't always see themselves as broken would help. I'd happily point him at some online reading if anyone has suggestions. Good ways to present the information might make him feel better too. My tendency is to drop it like a nuke, and sort the mess out later, which is not his style, and probably for good reason.

(He actually has mild ASD himself, but I don't think he's really digested that little detail. So do I, for that matter, but I "pass" well, I think he thinks I'm an exception too, but DS's symptoms are significantly less than mine at similar ages. Sigh.)

We don't have much family around so telling family is not an issue but we would tell them if they were closer. The closest family knows but they are overseas so it doesn't affect them or us in any way. As for friends, I volunteer DS3.2's Autism diagnosis freely. I noticed that those friends who know about it stopped looking at him with the "what is wrong with him? He's acting really weird!" question on their faces and instead, now they just enjoy him the way he is. So for me it has definitely made my life easier.

This is not something you have to tackle all at once.

In our early days of dx, we felt that it should be kept private; it was DS's medical information, and I wanted him to be able to be private about it later. We simply didn't share it for quite a while, except with my parents (who understood and who are the first-line caregivers if something ever suddenly happens to DH and me). That gave me time to read and read, and adjust my thinking, and also to fight with school and put something workable into place.

We are still selective with distant family. My sister is in the know; most others (great-grandparents, cousins...) know that DS is wicked smart and immature, and that we're working on it.

I wonder if John Elder Robison's book "Be Different" would be helpful reading for your DH. Robison's very articulate about what skills need mastering, and how to have a really nice life with AS. He also has a good blog. (Personally I find Temple Grandin a difficult model; she has a very rigid idea of what autism is, that doesn't really fit our deal. YMMV.)

The bloggy writing of Emily Willingham and Landon Bryce is also helpful in cultivating a positive attitude. We are not rah-rah "neurodiversity" activists; but we have adopted some of that language about disability and difference into our household. Autism is a disability to the extent that it is holding you back; but if it's not holding you back, it's a difference. Our goal is to help you master the skills you need, so it's not holding you back. And so on.

Over time, we have found that more and more people in our community need to know.

In 3rd grade, it emerged that peers were scared of DS; they needed to learn about his disability. This was handled skilfully by a trusted teacher; it's not perfect, but overall it has been far better for DS to be "out" to peers than not.

DS10 is just back from his first Boy Scout camping trip without one of his own parents in attendance. This absolutely required-- for DS's safety-- that the scout leaders understand his deal. Telling others what they need to know helps them understand and forgive atypical behavior, and to be supportive instead of punitive when they see a kid struggling. Anyone who's in charge of our DS without us present gets some amount of information, not the full picture, but what they need.


Which means you both probably need to give yourselves a little extra time and space to think through this major change in plan. Your DS is going to need you to have a positive attitude and a well-worked-out way of talking about autism. You can't get there overnight, however. Takes practice.

I'd highly recommend making it part of the family conversation-- so that "autism" is not a bad word, it's a word that describes certain challenges, and not uncomfortable for your DS to hear and use that word. In time, that will enable your DS to be an advocate for himself-- "this is hard for me because of my autism, so I'll try it another way, or try harder, or get permission to revise the task."

HTH, hang in there,
DeeDee

Michaela, I don't have personal experience with ASD in our family, but with other differences. My first thought when I read your post is that it's not been that long since your ds received his diagnosis - you've had suspicions for awhile but if I remember correctly, the actual diagnosis just came this spring. Maybe your dh needs a little more time to become comfortable with having the diagnosis before he'll be ready to really know what and how he wants to share with the rest of your family. I think DeeDee's suggestions are spot-on - it doesn't need to be an all-at-once reveal, and who needs to know is going to change as time goes by.

I also wanted to let you know that we didn't tell our family about our ds' challenge at first, but we weren't purposely not telling. We happened to mention it in a response to a question from a relative at some point in time and the most wonderful thing happened... We found out ds has a cousin with the very same challenge! I can't tell you what a relief it was for our ds to find out that he wasn't the only kid in the family with his set of challenges -up until that time he had been feeling very very different and possibly felt that his challenges were really somehow "his fault". We don't live anywhere near his cousin and we rarely see them, but just knowing helped my ds in such a huge way. Your ds will of course have you and your dh to help him understand how ASD impacts him, but you might find you're not the only family members, and you might find some understanding.

Best wishes,

polarbear

Interrrrrrresting...

Yes, I've been pretty sure for a while, and the Dx really feels like a formality to me. After the fact, anyway, when we were in the process, I was very nervous that there was some other thing going on that I'd never really heard of.

I guess I feel like having the piece of paper is the permission I've been waiting for to explain why we do things differently than people sometimes think we should. And why we need to have a freakin' PLAN.

I agree that Grandin can be a bit rigid... but that's part of the package, no? And her experience is fairly close to mine.

Off to think.... back later

That's why it's so useful that so many perspectives are now available. You can take what's useful and ignore the rest.

Grandin's emphasis on "we are all visual thinkers" doesn't really work here (DS learns in many ways, and the visual cue cards people use with autistic kids drive him nuts). But if she happens to provide useful help for you, use it!!! Her mother also has a book out, I believe; I haven't read it yet.

DeeDee

I should add to my earlier post that while with DS3.2 we have shared the diagnosis with quite a lot of people around us, though we always emphasize that it is not a final diagnosis yet, we haven't really shared our DS4.9's PDD-NOS diagnosis with anyone but a very few close friends and family. A lot of our friends' kids are so out of control that DS4.9 seems to be the well behaved well spoken child. So there really is no need to share that info. I still wish I hadn't even shared the info with the school but it was our only way to get him into special ed preschool so we had no other choice at that point but now it's more of a road block than anything else. But the younger one is just too different in many ways and with our friends knowing more about his needs, they coach their children a little as to how to interact with DS so he doesn't feel overwhelmed and feels more comfortable (not getting into his face to check out his toys and things like that)

I don't know if this helps, but at one point when we were considering the possibility of ASD for DS8, DH said "Whatever. It doesn't change who he is."

It was such an off handed, yet succinct statement that really resonated with me.

In terms if resources I really recommend listening to/watching the talks by Karla Fischer that are available on line, they're more about adults and teens than children - but are very much from the perspective of some who is highly intelligent, which both you and your DH might find very relatable.

She also has a Facebook page (Karla's asd page), which provides a steady steam of articles etc. I find her talks more useful than her info graphics.

If you google Karla asd, you'll get a bunch of relevant links on telhe first page. Search for Karla on YouTube for some videos.

DS had a "diagnosis" of mild to moderate autism by the school psychologist (in quotes because I don't know that she was actually qualified to make such a diagnosis). I regret telling my close friends and family about this, especially as a few months later a private psychiatrist told us that yes, DS has some quirks, but she couldn't even call it Aspergers, let alone autism.

I wish I had waited, or held off entirely, as some reactions were not particularly positive. But because having a 2e kid is so isolating, I feel compelled to tell my family a lot of stuff just to get it off my chest, iykwim.

And while it's true that a diagnosis or a label doesn't change who DS is, it can change how people interact with him, and not always for the better. Once you release information to the world, there's no bringing it back.