Tuesday, February 14, 2012

The Great Rift

Ethan, Dan and Anna at last year's Autism Speaks Walk

We've started getting materials on this year's Autism Speaks Walk in the mail, and I'm not sure if I want to go.

Almost everyone has heard a little something about the great rift in the autism world, about the division between the vaccines vs. no vaccines camps, the "cure autism" vs. celebrate autism (or neurodiversity) groups, about the arguments and disputes over semantics like high vs. low functioning autism or even using the word "autistic" vs. "has autism." This isn't one big united family by any means, in the way I imagine parents of say, people with Down syndrome.

What bothers me is that I know I'm part of the problem.

Last year we attended our first Autism Speaks Walk in East Hartford. In the back of my head I guess I was thinking the experience would be not unlike the first time I visited Boston Higashi School, the residential school for kids with autism that my brother attended. Within a few minutes of walking through the doors, I was nearly in tears, because wherever I looked there were kids covering their ears or flapping their hands, kids walking with a different kind of gait or talking a little too loudly. I was simultaneously awed and comforted, having never met an autistic person besides my own brother.

At the Autism Speaks Walk last June, I kept looking for the people with autism. I'm not kidding. I'm pretty sure there were thousands of people there. Not one child except my own melted down about having to wait in a long line for the bounce house. I saw a total of one kid, a boy about 12, who was sitting with his legs crossed and hands over his ears in the corner, most likely to escape the noise. I heard another mom in the bathroom talk about her daughter loving to play with soap bubbles in the sink all the time. Other than that, we could have been at a sporting event or a fundraiser for, well, just about anything.

I know, I know, I know. I know how people will gently remind me. Autism is a spectrum. Autism doesn't always have to be seen. A person can still be high-functioning and struggle mightily with social interaction and leading a regular life. I know. And this is why I chide myself even while I write...because here I am contributing to the problem. I think of my brother and his severe disabilities and wonder how anyone could even dare complain because their child is a little socially awkward, all the while knowing someone could be thinking the very same thing about me complaining about Ethan while their child still struggles so mightily. This is not a fair way to fight or live. But it has become part of the story of autism, this disorder that drifts across such a wide and sweeping spectrum.

There has been a lot of talk lately about the recent revisions to the diagnostic guidelines for autism. A lot of people are really upset. A lot of people are frightened that under the new guidelines, their child may no longer qualify for services. I'm going to say something here, and it's a good thing this blog does not have a huge readership because I'd probably be destroyed by the end of the day:

I'm happy about the new guidelines. I think too many people who 25 years ago would have been classified as "quirky" are now qualifying for services under the autism umbrella. And that stretches resources incredibly thin for people like my brother, who did not speak until he was 12 years old, who was not potty trained until he was 7.

Think about Ethan, I remind myself. What if he no longer qualified for services? Then how would you feel?

I think about that, and I've thought about this a lot, and this is what always stays with me. Ethan is learning how to be independent. Ethan could get by if he had to. Yes, I prefer he has services, but if him having services means someone else who desperately needs them does not get what they need from a system that is lacking, then let the other child have them, or have more. I wonder sometimes: are we using more of our resources to help make children just a "little off" become as close to typical as possible, because they have the best chance of getting along in the world, when maybe we should be allocating a greater portion of those resources to help those more severely impaired? What does this say about our values, about how we perceive one's value to society?

I hate how even as I write, I carry out that "us vs. them" mentality. I know we are all in this thing together. Yet I have to admit when I hear certain people referring to their kids' challenges with autism, I still sometimes see just a child in a mainstream class who is socially awkward...because always in the forefront is the autism I knew for my first 34 years -- the biting and raiding food and poop on walls and very, very limited communication.

And so, I don't know if I will go and walk this year. I'm still not quite sure why I was so bothered. Maybe because I was hoping to make a connection. Maybe I have misconceptions about what it takes to make a connection, that one's experiences must be very similar, that one's child has to reside somewhere near the same spot on the spectrum. Maybe I'm expecting too much.

All I know is, right now I'm part of the problem, not part of the solution.

And I don't like that at all.


Crystal Senzig said...

I hear you. I fight the same kinds of thoughts, and I know other ASD moms (online, honestly I don't know that many in person) who have encountered the same problem. And, come to think of it, my Ryan was the only one melting down at the only walk we've attended, but at the same time I was crying with relief that there had to be people here who got it. You have given me food for thought... and I can bet you the hubster and I will toss this one around. Thanks for being honest!

Anonymous said...

My son is on the severe end of the spectrum, so when I first heard this news my thought was "well, at least that won't affect us." I wonder how I would have reacted if he had been on the mild end- I hope I would be willing to give the resources to those who need them the most. I hope I would be a generous person with that, but I'm not sure I actually would.

It's funny what you said about the walk with not seeing anyone with autism there! We were at the autism specialist doctor last week, and my son was making quite a scene in the waiting room. All of the other kids were sitting quietly, waiting patiently, and my mom kept asking where the kids with autism were!

Carolin Newmeyer said...

People must understand how children with autism behave, and they must do so without forming any judgment in their minds. This walk will remind everyone how people should unite to love and take care of kids with autism. They may do their activities differently, but they also go to school just like any children.