Monday, July 21, 2008

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.


Maddy said...

I certainly think it's essential that whilst we cope day to day, we also keep an eye on the future, where we are heading, what facilities will be available. [and do our part to make it happen]

rickismom said...

I wish that the Down syndrome community was as supportive of adults as you seem to think. We in the world of DS, also have a lot to do in this area.
-mothwer of Ricki, age 13, with DS and ADHD

Steve D said...

Hi Rickismom -
Thanks for commenting. I have formed my opinion based on second-hand information of the Down Syndrome community. I have heard tremendously positive things about the support structure and general positive outlook that is embraced by the community at large.
Here in the autism community, there are extremely deep divisions, political power struggles, and lots of rancor over many issues. So perhaps the difference is in the comparison of the two.
Would you like to expand on some of the problems you see occurring in the DS community as relates to transitions into early adulthood or adulthood (or anything else, for that matter?).
Your opinions and input are welcome here.

Club 166 said...

I had a cousin with DS (unfortunately she died about two years ago), so am somewhat familiar with some of the differences and similarities between the two communities.

There are problems in the DS community (which like most communities, is really hundreds of different communities somewhat united by a common situation, and not one monolithic community) which are similar to some in the Autism community. People that run programs have certain requirements for clients, and sometimes (often?) aren't flexible in getting programs to serve the unique needs of individuals in the DS community, rather than just doing the same thing for everyone. Also, parents of DS kids fight many of the same IEP battles that we do in the Autism community.

One thing that I don't think has an opposite similar number in the DS community is the "controversy" over what causes the condition, and the subsequent "controversy" over how to (and whether we should) "cure" the condition. I don't think there's anything as fractious in the DS community, that I am aware of. Admittedly, this was my cousin, and not in my immediate family, so I could be wrong about this. But I have seen nothing in the popular press or online that suggests the bitter divides between parent factions and members of the community, as there are in the Autism community.

Finally, the DS community as a whole have done much more work in advocating for respectful acceptance and inclusion of DS adults. I think they are WAY ahead of the Autism community in this regard.


Angela said...

YES!!!!! I completely agree.

Anonymous said...

Although Ms. Bauer eloquently states the question of the needed support within the autism community, she neglects to take the steps to build up that community or identify possible roadmaps to building a more supportive autism community. In fact she makes a deliberate effort to state that the "grass is greener" by twice stating how she is envious of the family down the street.

The DS community didn't always have the needed support and in many cases the DS community still doesn't. So the fact that Ms. Bauer envies a community based on the false belief that the DS community has it so much better than the austim community is a dangerous slippery slope.

The needs of the DS adult children and the needs of the adult children with autism are different, the support can be shared and the over arching solutions can be found.

I'd tell her to knock on her neighbor's door and ask them and learn what they did. What she would find is that it is HARD WORK, PATIENCE, COMPROMISE, LAUGHTER, TEARS, FORGIVENESS, DETERMINATION, LOVE and all the typical mechanisms of family. There isn't a quick easy solution which she seems to imply that she is looking for within her article. Does she want her adult child with autism living his whole life with her? (which appears to be the case of the neighbor) OR Does this adult child even want to live with her? In my opinion her article was more self-serving, "whoa is me" tale and takes us all down that grass is greener mentality of which community has it better. Aren't we all trying to do what is best for our adult children? So, shouldn't the focus be on uniting ALL the communities together instead of creating a segregation?