Sunday, June 03, 2007

Is it the 'Haves vs Have Nots'?

Even though I am not a member of the exclusive group known as the Autism Hub, I still feel I have a place commenting about it. Being a biased outsider, a parent of two on the spectrum, with radically moderate biomed tendencies, all I can offer is perhaps a woods view of the trees being talked about.

If I could be permitted some gross generalities into the mindset of autistic, it appears to me that many autistics I read on the internet are seeking order. One of the traits of autism is the need to have an order to life. Some may seek order in their universe by keeping things the same. Others, I think, might have a need to 'fix' the universe around them; seeing the world as it should be and seeking to go in that direction. I'm not sure if it's a trait of autism or of certain types of individuals, but many seek perfection in their worlds. Whether it is attacking the wrongs of society; exposing quackery; or creating, to a certain degree, a level of controversy within the inner circle of 'their' society; it's that seeking of perfection that drives us in the sometimes divergent directions we choose. Since no one knows what perfection is nor what is the best path to get there, disagreements will arise.

I guess we all, NT's and ND's, are seeking some sort of perfection in our lives. I say that with a bit of trepidation though, thinking of the possibility that I may have autistic tendencies myself (trying to put it into a cohesive blog for the future). I'm not sure whether I am part of that group called neurotypical, neurodiverse or some no-man's land in between. It's at once a revelation and an uncomfortable thought that I may not think like a 'typical' person. But I think that's more about a universal fear that everyone is an island; that despite our similarities, we are all alone in our shells with our own unique thinking patterns. Perfection may be a little more of an obsession in autism, but it is innate in humans themselves.

It comes down to autism being a specific, perhaps the first, neurological disorder that has tried to step back and say, "Hey, maybe we don't NEED fixing". I'll be funny and say the schizophrenics were too busy arguing with themselves; the ADHD people couldn't concentrate long enough to get a movement going; the manic depressives were either too busy or too bummed out; and the OCD's couldn't quite get it just right. But, even with the obvious disadvantages of autism, they can rightfully point out the neurological advantages as well. The bias against autistics can easily be compared to any bias against disabilities in general. The way will be plowed by the autistic adults today if my daughters are to have a fighting chance in the future. So, I have a vested interest in their success.

I was going to talk this one through to say that the disagreement between the autistic adults and the parents of autistic children is about who gets the funding and who gets left out in the cold. With all the focus on the autistic influx of children into the governmental system, it leaves the autistic adults scrambling for the scraps of funding. I doubt this plays a role in the current disagreement on the Hub, but it has to be on the subconscious of everyone's mind. My kneejerk reaction will always be to take care of my own first, the educational aspects of autism and getting school systems to recognize the need and the advantages of catering to those younger autistics. But parents must be equally as vigilant at fighting those issues affecting autistic adults as well. Discrimination; funding for proper medical care and housing for those in need; job training and retention; these will all become our children's issues in a heartbeat.

In this sense we are inexorably linked to a single cause. There are certainly areas where we do not overlap, but there are more than enough common bonds that can and should unite us to a common goal- the right to exist; the freedom from discrimination and the goal of a happy future for all peoples on the spectrum. I kinda stole that last thing from the Declaration of Independence, but I feel that what is being argued here...independence.


Mom26children said...

Hi Bill,
As a parent of several autistic children...and one nearly adult autistic, it is my responsibility to make sure their future has purpose.
I have accepted a job, to be announced later, as the head of Adult Autism Services.
We are going to change the way secondary educators teach our children with autism so they will be more capable of being adults and their future employers or colleges will be more capable of accepting our children.
Makes sense to me...
We get started this month with our focus groups and our curriculum to present.
Any imput you have will be much appreciated.
We are going to be a National organization, like Autism Speaks, just without all the negativity and crying (whining).....


We'll see as this 'Autism Generation', as I'll call it, comes of age, we'll need something more than just early intervention. That'll dovetail into what you will be doing. But I am grossly UNDERQUALIFIED to speak to the needs of older children, preteens and teenagers. That is where we are required to seek the advice, no make that the leadership of the autistic adults to get the input needed so that the children of today are put in a position not just to survive, but to excel.