Monday, November 17, 2008

When you think that someone is autistic…

Ever since my children were diagnosed with autism--both at a very young age--I did what all good parents would do and read everything that I could get my hands on about autism. Actually, I studied autism, aspergers, PDD and MR; I knew that I needed to become an “expert” in the field so that I could, not only, advocate for my kids, but also understand how their brain worked and how I could help them better.

One day, many years ago, we went to visit family for Thanksgiving in another state—like an in-law family reunion (holy hell, but I survived). It was also about a year or so after my kids were diagnosed and I was still reading whatever new book there was about autism. On the drive back and while we were approaching the NJ turnpike’s tollbooth (I remember that exact location—freaky) it just hit me like a ton of bricks--really. I turned to my husband and said “I think (so and so) has Asperger’s syndrome.” I was so sure of it.

His eyes blew open (he, too, was reading and learning about autism) and he agreed.

The most interesting part of this discovery was that this boy in question was 4 years older than my oldest child and quirky was only one way to describe him. In the previous years, and before I knew about autism, we had probably seen him a half dozen times or so, so we knew that he had some obsessions and quirky-like behavior, but we all thought nothing more about it. He was very intelligent and just seemed to know things so we could just so easy overlook everything else.

Conversely, my kids were so easily singled out by these family members because they “weren’t” keeping up intellectually. It’s interesting how this is the only marker people use for signs of problems.

So now comes in the in-law who is studying disorders—um, that would be me.

What does one do with information like this? Really? I told my husband to tell his sisters and see what they thought. The unfortunate part to this path to discovery was that I did not find it my place to tell my husband’s family what I had thought about a member of their own; even if it was just my caring and “educated” opinion that he should be evaluated by doctors.

The real sticky problem here is that this boy’s parents would never, ever, entertain the fact that their son has a disorder. They were perfectionists. Type A personality over achievers who “clearly” would either ignore my thoughts or deem them as ridiculous and insulting; be shunned from the family and their house; or be accused of needing to put “blame” on their side of the family for having autistic children of my own—and deeming me the angry mom.

To understand this better was to know that the very first words out of my mother-in-law’s mouth when Meghan was first diagnosed were “Well there isn’t anyone with autism in our side of the family AND WE HAVE SUCH BIG FAMILIES,” so with a raised eyebrow and a smirk--she blamed me. Oh, I could just feel the warmth, love and support permeating!!

So I left it up to my husband to say whatever he wanted to say and left it at that.

To this day not one word was spoken about this boy possibly having a disorder, at least not to me. But one day when I saw this boy’s mom a few years ago, she told me that she believed that he has some kind of “disorder”—she put it in her own safe and quick way. And I said with a definitive bounce in my words “Like Aperger's syndrome” and left it at that.

Not another word was spoken, but I think we were both relieved that we had the conversation and I think she was relieved that I hinted on it even if it never went any further.


Tanya @ Teenautism said...

It is hard when you see it and you recognize it. My policy (for myself) is if they come to me, I will have open arms ready to discuss their concerns. Once I did approach a family member about another family member who I thought had Asperger's. And after a fiasco and hurt feelings, I had to decide in the future not to say anything unless someone approaches me first.

Holly Nappi Collins said...

It is hard and a tough call. But I also knew that this boy was going to be okay w/o a real diagnosis. But if he was low functioning and I thought that he needed therapies right away, then I would have said something and took the chance--for the sake of the boy. Then at least the "thinking process" would (hopefully) be started.

Christina Shaver said...

My perspective on life is to get diagnosed (whatever it is) as early as possible and meet it head-on.

I have a difficult time understanding why a parent would ignore symptoms of anything. I see it happen, and don't understand it. But, at the same time, you have to respect people's privacy.

It's a tough call as to whether you should say something or not. And then another tough call as to how to go about it.

Holly Nappi Collins said...

Sometimes I think it’s denial—people who just don’t want there to be anything wrong with their child so much that they think it will just go away if they don’t admit it.

And the other reason, in my opinion, is sibling or friendship rivalry. People who are so concerned with one-upping each other, like money, house size, perfect children, etc.

babs m said...

Very interesting piece. I notice this often--both my husband and myself pick it up with other kids and even adults. Oddly, I think our pediatric neurologist who dXed our two autistics is Asperger's--he has ALL the mannerisms. But I've never asked him. I'll be back to read some more!