Monday, May 7, 2012

Autism Is Every Day

I wanted to write a really big show stopping finale piece to end Autism Awareness month but instead I found myself with total and complete writer’s block.  Or at least finale writer’s block because I had a dozen other ideas to blog about but I couldn’t write that closing piece. I’ve been thinking about it a lot the last week or so and have finally come to the realization that you can’t conclude something that isn’t stopping or that is nowhere near over.  Autism Awareness, like any other awareness, can’t be over until there is a known cause or at least effective treatment and acceptance. 

I’m pretty sure based on personal experience we aren’t anywhere near any of those things. In the last two weeks alone I have read that autism is being linked to the age of the father at conception, the weight of the mother during pregnancy, and a random and isolated gene.  I’ve also read that there might be multiple types of autism so maybe multiple causes. Long story short the answer is nope on a known cause. 

What about effective treatment? States are continuing to pass autism mandates that require insurance to cover scientifically proven evidence based therapies for a specified amount of time usually based upon the child’s age.  Unfortunately evidence based therapies eliminates just about everything that isn’t ABA or maybe some basic speech, occupational or physical therapies.  It doesn’t do anything for equipment like weighted blankets, compression vests, special beds, home safety systems, sensory swings, biomedical interventions, horse therapy, service dogs, or diet; all things that some people have claimed helped their child. Interesting that we are randomly picking which therapies to cover given that we are talking about the possibility of multiple causes or forms of autism which should translate into multiple therapies but given that we can’t get speech therapy covered at the moment I can’t even begin to argue that we have made tremendous gains in this arena either. 

So what about acceptance? I loved seeing all of the light it up blue on facebook and always get excited to see an autism bumper sticker when I’m out and about but we aren’t anywhere near acceptance. Let me give you a sampling of comments that we have personally received this past year from total and complete strangers:

  •  Oh that’s an autism service dog? That is such a waste of money and a beautiful dog since kids with autism aren’t really in there.

  • Obviously he’s just manipulative and needs firmer discipline. Some parenting classes might help too.

  • The entire alphabet? Really you want the goal to be for him to learn the entirealphabet?

  • Seriously you are old enough to answer me when I talk and get that thing out of your mouth. Don’t you know better?

  • He doesn’t need numbed for this procedure; kids with autism don’t feel pain.

  •  Don’t worry about him; I saw that Temple movie and he’ll probably end up an academic nerd.

  • You think he has autism? Wow I don’t think so because those are the coldest people ever and I’ve seen him smile.

I could refute each one of these but that doesn’t change the fact that someone or someones believed the statements enough to say them to a total stranger.  Some of these were really well educated individuals either in the school system or the medical system as well as just random on the street kind of people. 

In fairness I have to say that we also know a lot of really supportive people who want to give children with autism and other disabilities every chance at success possible. This is evidenced by the fact that a lot of total strangers came together to help us raise $13,000 for 4 Paws For Ability so that we could get Elf, the fact that strangers spend their lives training service dogs for children whose futures are unknown, by teachers who stay up at night trying to figure out another way to help Caden understand a concept or skill that he is struggling with, by therapists who are helping us design our do-it-yourself therapies because they understand our financial and insurance woes, by communities who build Miracle League Baseball fields so that our kids can just be kids every once in a while, and by the total and complete strangers who smile instead condemning when we are struggling in public. 

We are winning battles every day but we are far away from winning the war. Maybe that’s why I couldn’t come up with a good finale for last month. I had some awesome opportunities to talk with community groups and children about autism and maybe somewhere along the way those efforts made a difference. But I do have to work harder to make sure the public knows that every day is an autism day for us and the other 1 in 88 children’s families who are affected by this disorder. While you may know that a new diagnosis is made every 20 minutes, it is equally important to know that someone struggles or their family struggles every second of every minute of every hour of every day with this disorder and its complexities. 

I don’t have a great end to the month so instead I will share a picture of a birthday present I recently received because maybe it summarizes autism better than I will ever be able to.