Thursday, March 5, 2015

A View from the Middle

I'm just sitting here wondering if the two sides of the autism camp are ever going to get along.

I know this is a hot-button issue. And I know most of you are aware of what I'm referring to -- the great rift, the Us vs. Them that's developed in recent years over those who see autism as a tragedy to be cured and those who feel as if people on the spectrum are fine, thank you, just the way they are.

This is such a hard one for me, because I see both sides. I've lived both sides. I truly believe you can make arguments either way, and I see the way espousing aspects of either point of view could end up hurting people with autism (or autistic people, as some prefer).

Here's the thing: there are times I tire of Autism Speaks' rhetoric and yeah, I'll say it, fear-mongering. The worst of it all is that I get the sense they feel the best way to get attention, the way to get funding, the way to make an impact, is to paint autism with the most cruel, dramatic brush as possible. To trot out scary stats and make the most of them. To me Autism Speaks...it's time to listen, (one of their "taglines"), really means, "we're going to tell you what autism is, so listen to our frightful picture and help us do something to eradicate this thing."

I'm no expert on this for sure, but my understanding is the vast majority of Autism Speaks' research goes not towards the people already here needing help and better options, but on research into the root causes and early detection and treatment -- this includes the possibility of prenatal testing.

This scares me more than any of their statistics. This scares me, because I think of the burden they portray autism to be, and about that running through an expectant mother's mind as she goes for prenatal autism testing at some point who-knows when in the future. I think of that, and then I think of my incredibly awesome joy of a son, the one who has an actual, definite autism diagnosis. The one who has looked at me and told me how much he loves me. The one who loves numbers and repeating scripts from commercials and music and playing with his sisters and sports and all things on a screen.

My son is not something to eradicate.

And yet there are parts, there are some areas of the autism spectrum that are truly horrific. When you have a person who lives paralyzed and anxious because of the assault on their senses and their different way of taking the world in...a person completely nonverbal or close to it who has no good way to communicate their needs and as a result acts out in all sorts of destructive ways to express their frustration...a person who regularly participates in self-injurious behaviors -- how is that something we can just open our arms to and accept as being okay?

Again, I feel pretty unqualified to even be writing about this because there are so many things I don't know, and so much I haven't researched. But, as someone who grew up with the most severely autistic individual I've ever met, and who parents a son with a form of autism the average person on the street cannot even see -- I find myself at times growing frustrated with both sides.

I guess looking back over it all I would say two things:

We have to do more about services for teens and adults with autism, particularly in the areas of assimilating in college, and finding employment and living arrangements. Several years ago my mom was with me at an Autism Speaks Walk (I've since given these up) and she kept looking around at the informational booths and shaking her head. "Where are all of the services for older people? These are all for kids," she commented. It's as if the pervading mindset is (or maybe it's just human nature) that we'll throw everything possible at these kids to help them now. Only, autism is not something that just "clears up." As much as we want help for today, we HAVE to think about tomorrow, because tomorrow will surely come for today's kids on the spectrum. And there's so much more we could be doing.

The other is, and here I agree with well-known autism blogger Jess Wilson at A Diary of a Mom (which is not always the case). Autism Speaks can't have it both ways. You can't quote alarming statistics and paint devastating scenarios using numbers that include a vast number of people who are getting by just fine, who are different but happy, who in the past may not have even received an autism diagnosis, who just have a different way of perceiving the world and need understanding. There is a very real group of people like my brother. They desperately need help and yes, I dare to say I don't open my arms and accept this type of autism as just fine. I love my brother, but I don't think this is his best kind of life.

But we can't paint with such a broad brush. There are people out there still not vaccinating because they are terrified that autism is exploding in our country. We can't forget this is a spectrum that can't be put into a neat little box, and probably can't be addressed in the typical way we'd fight say, cancer or work to find a cure for cystic fibrosis.

And the more I listen, the more I realize the arguments about autism and what to do about it run as broadly as the spectrum itself. And so we must approach them in the same way...with understanding, with patience, and with the openness to being inventive, creative, and thoughtful about not just today, but about how today's actions will impact tomorrow.

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