Thursday, February 15, 2007

How much to reveal?

The question often comes up regarding what do you say about your child’s autism. To others, the child himself (I am going to use himself instead of him/herself, as my child with autism is a boy), and siblings.

My short answer is that it depends, and do what feels right.

We have the advantage in our family of not only being the parent of a son with autism, but also of being parents thru adoption. So we’ve struggled with a somewhat similar question before.

The question of what to say, to whom, and when, seems to figure prominently in discussions of autism. Kristina Chew originally named her blog “My Son Has Autism”. And MOM-NOS recently gave a great description of what many of us go thru when deciding how much information to impart when our kids are going to someone else's house. And it seems that not a week goes by that I don’t see posts from people wondering how much information to relate to people in various other situations.

Well, for better or for worse, here’s how we approach it.

For our kids, it’s easy. Like adoption, talk about autism is natural. We don’t want our kids to feel that there is anything dirty or shameful about being autistic (or being adopted, for that matter). So our natural conversation contains many references to autism, school services, social skills class, etc. Our kids will be well versed in all aspects of IEP’s, FAPE, LRE, ESY, ABA, etc. In fact they will be so well versed they’ll probably be able to serve as advocates by the time they graduate grammar school. We talk about how all people have something that makes them different, and autism is one way of being different. We also point out how being autistic can give you certain advantages in life. This can sometimes lead to interesting playground exchanges:

“I’m autistic.”
“I’m artistic, too.”
“No, I’m AWWtistic. Not artistic. My brain is different.”
“Uh, OK. See you.”

While the kids still don’t understand that they don’t necessarily have to instantly share all aspects of themselves and their family life when meeting someone new on the playground, I’d rather have that then have them think that there is something “wrong” with them.

Now when it comes to talking to others about autism and how it affects your family, then I’d be inclined to recommend letting your gut guide you.

For acquaintances and schoolmates, it seems that it’s situational. Sometimes we just say that Buddy Boy has some difficulties with social situations. Sometimes we say that he has autism and sometimes this leads to him having problems with certain situations. Sometimes (like a big picnic in a park where we run into people we are acquainted with) we don’t say anything and just wait to see how things play out. My gut tells me that I’d rather have someone get to know Buddy Boy somewhat before telling them he has autism, rather than have to overcome any preconceived notions about autism they may have.

When it comes to work, I’ve never been one to go on and on about my home life with anyone within earshot. Many people are more social than me. You have to find what’s comfortable. I do have some close friends at work that I talk to, and to those people I talk about our family life, including the fact that our son has autism. I try to let them know the good stuff as well as the not so good stuff, so they don’t get a skewed view.

In public, if we’re causing a scene (which thankfully doesn’t happen all that often anymore) it’s sometimes necessary to do just as the good Dr. Chew does, and simply start out with “My son has autism, and …”. At other times a simple “Sorry, we’re just having a little difficulty today” does the trick. I think that personally I sometimes am hypersensitive to what I think others are perceiving. If you look at NT kids in public, a lot of them are exhibiting “behaviors” at any given time. So I’ve been trying to relax more and just go with the flow if we’re really not bothering anyone else. It’s really none of their business.

So that’s it. Honesty and forthrightness in the house, and using our gut instinct and common sense outside.

So what do you do?

Joe is 209 :( too much chocolate!


Daisy said...

My child with Asperger's sticks out because of his white cane. Beyond that -- we are open about his diagnosis. i hope we're modeling this so that he can be open as well.

kristina said...

This is a great post---of an "Autismland 101" sort. I do say a greater variety of things now----anywhere from nothing (with a shrug/smile, depending) to "he's disabled" to just "autism" and occasionally to a good old "MSHA." I used to say "special needs" ocasionally but that phrase has been leaving my vocabulary.