Ugh – clearing out the cobwebs, someone keeps telling me to write the book. OK already… here’s the blog version.
I’ve been spending a lot of time recently, that means over the past year….immersed in autism, dealing with autism, taking it out and examining the autism crystal. Let’s be more specific – my friend Mary’s son is autistic, my new young friend Rick is autistic, my son is autistic. One great big word and 3 very different faces. Early intervention unlocks the door and that doesn’t mean letting the schools, the educators “take care” of or handle the problem. When they do, the outcome is very poor, painful to witness a 16 or 26 year old manchild who is overcome by fear, debilitating paranoia, whose autism becomes the lens through which life is experienced.
Contrast that with a 25 year young man who was been successfully habilitated since the age of 2….sure schools and educators were involved. But the mom, that’s me, took care of the situation. Every step of the way; every challenging, frustrating, uncertain step of the way towards a great victory. Does a general know the outcome of the battle as the first salvo is launched? She only has an expectation of victory and begs, borrows, or steals the tools to make that dream a reality.
Back in 1985, we in America didn’t have much knowledge about autism. The research had not come out of Europe yet. Our kids were diagnosed with “pervasive developmental delay” or some other catch-all disorder. Autism was for head bangers, vacuum huggers. Now we know that autism is for doctors, lawyers, indian chiefs….all quite succesful and very special.
I read something last month about anxiety, about the effects on making changes (like removing a kid from their computer obsessed world) with its potential to increase anxiety and exacerbate autistic behavior. I misplaced the article and lost my train of thought…..not at all uncommon….and so, this blog. While this new article is in my hands, the thought is on my mind.
The article is “Training the Troops” by Tracey Quinlan Dougherty and it discusses the “resilience training program which helps soldiers and their families weather the financial, emotional, and psychological stresses of repeated deployment. It uses principles of cognitive-behavioral therapy, which involves challenging one’s inaccurate thinking, to help participants make better decisions, communicate more effectively, and deal with difficult situations.”
It’s been a very successful program, first with Philadelphia middle-schoolers and now with military folks. So why not with autism? It takes a very concerted, 24/7/365 effort to counteract the negative thoughts, to disrupt the seemingly logical thought process. It is not easy to help these young people find the flip side, the positive thoughts and then hold them firmly in place. There have been days when I wanted to scream in frustration, days I constantly, deliberately, and painfully played “little Mary sunshine” just to get these kids to the other side….only to see them slip away so quickly without that constant positive reinforcement. The journey of a thousand miles begins with that single step….yes.
What I’ve seen recently, as an autistic child ages, the propensity for dark, perserverative thoughts can become an obsession, a paranoia. They are older, able to understand homelessness, bag ladies, being on welfare, never graduating from school, not having a girl friend….all those things that maybe they can or cannot ever do. Those dark scary things which, given the wrong circumstances, may become their reality. Honestly, it’s frightening and it’s possible.
And worse yet, there are no resources out there to help them anymore…not once they’re grown up. If the schools push them through, out the door, they are not ready to deal with our world….so, where do they end up….on our doorsteps, in our shelters, under our expressways. These bright lights, these visionary yet singular minds silenced. Can we do no better than this?
