The Cure! I've Found It!

Let me just get this out of the way and say "Yes, that is meant to be tongue in cheek."  

Autism has been a part of Brandon's life, and by extension mine, for 7 &1/2 years now.  This also means that first NAAR and later Autism Speaks have been part of my life for around 7 years now.  I will admit that, in the beginning, I wanted a cure.  I haven't met a parent yet that didn't start out in that place.  Eventually I got around to defining what I personally meant by the word "cure".  What I wanted was the keys to my son's kingdom, as it were.  I wanted to understand what things made his ears hurt.  I wanted to know what type of classroom he would learn best in.  I wanted to know what caused anxiety for him.  What made him frustrated, angry, and why.  I wanted to have a "real" conversation him.  I wanted appropriate supports and services, so he could succeed.  In the end, what I wanted wasn't really a cure at all.  I wanted a way to ensure a good quality of life for him, which is not even close to the same thing.  

Like most parents of an ASD kid, I've seen Brandon show all sorts of behaviors I didn't understand.  I've been *that* parent, at the other end of a phone from my son's school, trying to figure out why he hit, or bit, or overturned a desk, wondering how if the professionals didn't have an answer I was supposed to find one.  I was determined to try though.

In the trying, I discovered the adult self-advocate community.  I learned that "cure" is very much a four letter epithet for many of them.  I also learned how very much they had to say and to share with NT parents, and how many of them are willing if we would just listen.  I didn't learn what things hurt Brandon's ears, but I learned not to be embarrassed by carrying noise canceling headphones around (heck, I've even used them myself once or twice.)  I learned he got frustrated and angry because the world looks so very different to him than it does to me, and that if I just take a few minutes to help bridge the gap, there is a lot less frustration and anger.  I learned that what I thought of as appropriate supports and what an autistic thinks of as appropriate supports could be miles apart.  I learned that a lazy Saturday at home every once in a while, in pajamas, in his room with his computer, books, and stuffed animals with the door closed allows him to reset himself and ensures smoother days ahead.  Best of all, I learned how to talk with him.   You see, "real" is a matter of perspective.  The things Brandon wants to talk about are very real to him, and important.  When I finally stopped to dignify that, he did, in fact, start talking about the things that were real to me.  I've always loved my son, but now I get to enjoy him too.  He's whole, as is.  I've found the cure.  It's not Brandon that needed to be fixed - it was me.  

I'm not going to claim that every day is a picnic.  We still have plenty of tough times together, when my NT perspective and context get in the way of understanding his autistic perspective and context.  I'm also a parent, and he's a kid, and he does plenty of things every kid does that invoke the wrath of parenthood.  

I'm also not going to claim that autism is always a blessing.  I'm not Pollyana, and some days it's a right pain in the ass.  I don't enjoy seeing my son struggle.  I don't enjoy the constant need to focus on Brandon's deficits in order to justify his services.  There are some days where I fail miserably at bridging the gap between us, and one of both of us ends up in tears.  But none of these things ARE my son, and they are my problems, not his.  

If you're familiar with Autism Speaks at all, then you also know this growth comes at a price.  You see, I no longer like the word "cure" either.  My son is not a tragedy, and he doesn't need to be cured.  What he needs is to come of age in a world that is ready to accept him.  It's a tall order.  You see, if the "nation's leading science and advocacy organization" can't accept him as is, how can we ask anyone else to?

I've been asked why I still volunteer for them.  I still believe in the research, because I believe that for some of the symptoms of autism, we can find ways of making it better.  I believe in the advocacy work that goes on in the national arena.  I believe that in the next few years you will see them focus much more on adult research and adult quality of life issues.  I believe that if people like me say it enough times, and say it loudly enough, that they will understand that in so many ways the cure they're looking for is right in front of them, if only they would listen to the adult self-advocates.  It doesn't matter if what they has to say comes from their mouth, their computer, their iPad, or their Dynavox.  

Self-advocates speak.  It's long past time to listen.