Sunday, January 11, 2009

NIMBY

If anyone doubts the need to expand positive awareness of autism in particular (are you listening, Harold Doherty?), and of disability in general, please read this article from my local newspaper.

It is heart-wrenching to hear quotes from potential neighbors such as:
"We have no guarantee as to who is going to live there and with what degree of mental illness," said Diana Grogan, who lives a few doors down [from a proposed group home in a suburban neighborhood].

Perhaps Diana Grogan should examine precisely what type of guarantee she wants, and what misconceptions about "mental illness" she harbors that make her feel a guarantee is necessary. Perhaps Diana Grogan should consider that her life, too, may be touched by "mental illness", and exercise the same degree of understanding and compassion that she would someday expect others to exercise in her or her loved ones' favor.

There are some encouraging aspects to the article as well. TERI, the organization cited in the article, has been around North County for a long time. I've heard good things about them, and I certainly appreciate the progressive approach they are taking towards promoting independence for those who are involved with their program.

12 comments:

MJ said...

I think you are correct in that more positive awareness of autism is a good thing. However, I think that often this positive awareness goes too far and denies the reality of what it is.

When this happens you get some rather out there ideas such as "Recovery from autism is neither possible, nor desirable" or claims that the obsessive side of autism is a good thing.

And I think that does more harm that good to people on the spectrum.

So I think we have to find a middle ground between positive awareness and talking about the realities.

Steve D said...

Hi MJ -
Thanks for commenting.
I read your links, and I think I understand your opinion on the "cure" issue.
Having said that, I think your approach with Lisa at about.com was telling. You seem to hold the view (or at least prefer to argue from the view) that we need look no further than the DSM-IV's "language" to prove that autism is "bad".
I, for one, choose not to view the DSM-IV as the be-all, end-all of how I view either of my autistic sons. They are SO MUCH MORE than their diagnoses. And, since the DSM-IV authors specifically set out to describe the "disordered" or "disabling" aspects of autism, what exactly do you expect to find there?
You see, it is up to us - the people who love the autistics in our lives and the autistics who are able to effectively express themselves - to generate a broader understanding of autism and help people to understand that it is not "all bad".
It is, in my opinion, the "all bad" angle that causes parents to try desperate measures to cure their kids, and causes potential neighbors to dread the existence of autism in their backyard.

MJ said...

Steve,

What I was trying to get across in the particular conversion was that autism, as is strictly defined is worth looking to cure. Having read many posts that used that approach to "prove" something one way or the other (Kev from LBRB using that approach to "prove" Hannah Polling does not have autism comes to mind) I though it would be a useful way to point out the absurdity of the recovery statement.

Since that is the definition of the condition of autism saying that you do not want your child to recover from those conditions is a problem for me.

Having said that I was not trying to imply that a person with autism is limited to being just what the DSM-IV describes. I think the distinction here is the difference between the person and the disorder.

A person with autism is a person like everyone else and deserves to be accepted. The condition know as autism is not something that should just be accepted.

I think we are saying the same thing but from different angles. I just believe that the person's strengths are their own and not derived from autism. You seem to believe that autism is a fundamental part of who they are.

MJ said...

Sorry to keep commenting, but I ran across this video which I believe is a good example of extreme "positive awareness":

http://www.youtube.com/watch?v=R4z7d-LVIoo

Things like this do not help.

Autism Reality NB said...

Steve D

I have been reading, and listening for the 12 years since my son was diagnosed. If you look on my blog site you will see many pictures of a happy boy living loving life and those who are fortunate to share his life.

It may not have occurred to you that many parents, those advocating for ABA or seeking cure, love their autistic children and try to do their best for them.

Many of us do not subscribe to the view that a disorder which is severely debilitating for so many is something to be celebrated. We do not choose the Steve D/Autism Hub Head In the Sand approach to helping our children.

I have, with other caring parents, fought in my home province, successfully, for government funded pre-school autism therapy and for autism trained teacher assistants and resource teachers to work with autistic children like my son in our schools, to ensure a tertiary care treatment team for those autistic children whose existence you are unaware of, the ones who injure themselves to the point of brain injury, gnaw on their fingers,or starve themselves because of their aversion to color, taste and texture of so many foods. I have provided pro bono legal services to higher functioning autistic youths and I have been advocating for a decent residential care system for autistic adults.

You, of course, have also been busy attending conferences to celebrate, and blogging about, the joy of autism, a neurological disorder.

Keep up the good work Steve D.

Steve D said...

Hello, Harold (Autism Reality NB) -
First of all, I'm glad that you are able to enjoy the luxury of having a discussion like this on my blog as, unlike you, I do not censor alternative viewpoints or critical comments.
Second, your summary of my advocacy efforts certainly shows some gaps in knowledge.
But perhaps, for once, you can squelch your seemingly endless appetite for hurling insults and speak to the topic.
I asserted in this post that increased positive awareness of autism may serve to benefit autistics in cases like this, where negative stereotypy and a "Not In My BackYard" attitude diminish residential opportunities. As one who has legally advocated for residential care, do you have an opinion on this?
Would you like to, to use one of your favorite phrases, "contribute to the discussion"? Or will you be satisfied with insulting me and my readers without even an attempt at substantive commentary?

Steve D said...

MJ -
And here, as a counterpoint, is an example of what occurs at the extreme side of the cure mentality. Which, of course, does not help either.
http://neurodiversity.com/weblog/article/181/

Phil Schwarz said...

Many parents/family members of young autistic children, and of profoundly disabled older autistic people, see only the profoundly disabling factors, and those factors flood everything else out.

An analogy:

When we say "autism isn't all bad, isn't just disability", these parents say: "You're telling me the sky isn't blue?! Autism is as surely a 100% bad thing, as surely as the sky is blue!"

The truth is — the sky is really black and starry. It only looks blue during the day, because the sun floods everything else out. But when the sun is gone from the sky, the stars become visible, and a whole 'nother universe opens up before us...

As outcomes improve and profoundly disabling factors are mitigated, these parents begin to notice the differences that aren't intrinsically disabling. And they stop wanting to eradicate all traces of them from their children. And *that* is what is meant by "recovery from autism is neither possible, nor desirable". Mitigating the truly handicapping aspects of autism, but letting be the aspects of autism that are just *difference* that society really has a moral obligation to accommodate, is what we should really be after.

The DSM is *never* the final word on the potential of real, live autistic kids and adults. They are so much more than that. And that "so much more" is ALSO autism.

The history and public discourse about autism are littered with false dichotomies. And those false dichotomies are what has done harm to people on the spectrum -- not positive awareness.

You don't have to choose between positive awareness and awareness of the handicaps and obstacles autistic people struggle with. There is room for both. One AND the other. Take time to learn the power of the little three-letter conjunction "and": it compels whatever is on either side of it to coexist in harmony.

BTW, MJ, I couldn't find anything in Lisa Jo Rudy's post that you linked to about "the obsessive side of autism".

And I think Kristina and Dora are doing a great deal of good, over at http://autism.change.org -- go read some more.

Phil Schwarz said...

A non-NIMBY story from (a much tonier town than mine, in :-)) our neck of the woods (if you read far enough):

http://www.boston.com/news/local/massachusetts/articles/2009/01/04/in_lincoln_debate_persists_as_group_home_prepares_to_open?mode=PF

Phil Schwarz said...

Argh, URL didn't work.
Try this one instead:
http://tinyurl.com/8fw4dw

Autism Reality NB said...

"Or will you be satisfied with insulting me and my readers without even an attempt at substantive commentary?"

Steve D,

I did not intend to, and did not, insult your readers. I did respond to your latest silly shot at me in your opening comment.

Have a good day and may all of your "autism is a blessing" conferences be pleasant for you and the other team players.

Steve D said...

Thanks for the link and comments, Phil. And to MJ for contributing to the discussion.

Harold, referring to the Autism Hub's "head in the sand" approach to helping children is, indeed, insulting.
And my "silly shot" was not a shot at all, it was simply identifying you as one person who denounces the need for any type of positive awareness of autism. You have been very clear in your writings over time that the only suitable characterization of autistics is to label them as neurologically disabled.
Its nice to know you're reading, though, Harold :)
Oh, and I guess contributing to the discussion proved a bit much for you this time.