On Support

I just read a great column in the Washington Post by Ann Bauer, and I wanted to share it with you.

Please read the article in its entirety here. You will need to register (free) in order to access the page.

One of my main goals in keeping this blog and participating in online and real-life advocacy efforts is to try to promote the concept of supporting autistic people. I remain immensely dismayed by the overwhelming occupancy of cause and cure issues in the national rhetoric on the topic of autism. It is far too often that autistic adults and those who are transitioning into adulthood are ignored - they are victims of the autism community's unnerving inability to move beyond the vaccine and mercury causation belief systems. These belief systems pigeonhole the range of discussion and seemingly override most other concerns within the community. These belief systems result in a worldview that narrows the definition of "support" to a set of medical interventions sold to parents with still-young children. To put it in a different way, one a friend recently mentioned, the broader autism discussion has been "framed" - the narrative has been set in the public's mind - to imply that all autistics are young children who are the victims of their toxic environment.
One unintended result of this misappropriation of ongoing focus and energy on the vaccine issue is that it inevitable draws resources from known areas of shortfalls. One such area is aiding young adults with their transition into adulthood.

Let me give you a quote from Ms. Bauer's piece:

"My grown son has autism. And while I wouldn't trade him -- the person to whom I gave birth -- for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we're flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance. In all these areas, family members of those with Down syndrome have figured out a cohesive, workable system of support."

I think Ms. Bauer hit the proverbial nail on the head. I think she has voiced the concerns that parents of adult autistics have been asserting for a long time now. Is this situation improving? I certainly hope so, but obviously not at a pace that has helped Ms. Bauer's son.

Another quote:

"Third -- and most important -- they have carved out a place in society for
their children. It's a hackneyed myth that people with Down syndrome are
uniformly happy, but it is true that they have the capacity for joy and that
their community has ensured they have a breadth of options -- career,
marriage, dignity.

This is what we who love people with autism must do"
Thank you for that, Ms. Bauer.
You see, I have long wondered what happens when the last biomedical treatment
has been tried, and the resignation sets in that autism truly is a lifelong disability.
Or when a child who has been held out in public as being an example of a "cured",
or "recovered", by his or her parents has problems as life's stages unfold.  Problems
that he or she is not "supposed" to be having.
Well, hopefully those of us who have been working towards societal acceptance,
who have been shooting holes in the "autism is worse than cancer" mindset, who
have decided that respect and dignity freight more effectively in autistics' lives
than panic and pity, hopefully we will have made enough of a difference in
society that those kids, too, can pursue their individuality in a way that preserves
their happiness and sense of fulfillment. 

So how do we go about that?  How do we improve services and life transitions for
autistic people?  In an interesting parallel, a really good post hit the Autism Hub today
by Joel Smith on that very subject.  In it, Joel - an autistic adult himself who has the strength
of experience behind his words - spells out specific areas on which supporters and
educators of autistics can focus for the most positive impact.  Please give it a read. 

Ann Bauer and her son.  Joel Smith and the Autism Hub.  My son J.  Let's keep writing our
own narrative.

Note:  Apologies for the formatting problems with this, and other, posts.  Blogger's software is
just abysmal when it comes to basic formatting.