Wednesday, March 31, 2010

Autism Awareness... A Month of Disputes

With Autism Awareness Month beginning, so are the annual debates on various online forums and within the media. For the next month, expect stories on the debates, the controversies, etc. involving autism.

On LiveJournal yesterday there were more than 50 posts within a few hours on the puzzle piece icons / logos used by various autism-related organizations. The vast majority of posts were from people with ASDs who view the puzzle quite negatively. One reason for the depth of distaste is the association of the puzzle with Autism Speaks.

If you really want to get people arguing, mention Autism Speaks, Generation Rescue, Autism Society of America, and Autism Self-Advocacy Network within any forum. The views of these organizations are often not grounded so much in logic as faith. Some people really, really dislike one or more of these groups. The groups themselves fight for funding and public attention, plus there is local-level animosity in some places.

I am a member of the Autism Society of Minnesota, which in turn is a regional chapter of the Autism Society of America. I've had supporters of other groups complain to me about ASA, but I have found ASA is generally less "single-purpose" than other organizations. I'm only loosely involved in ASA, mainly presenting at some events. My theory is that you should speak where people might hear.

But, I'm not passionate about ASA. By nature, I don't care for large groups -- even large charities. Any large organization starts to focus on maintaining its own funding and growth. Service becomes secondary to the group's existence.

It's a shame parents, providers, educators, and researchers waste energy yelling at each other and questioning each other's motives. I don't care for most autism-related organizations, mainly because I think they play on the fear and misunderstanding of science within society. But, I also know that the parents joining these groups are not evil. I don't question their motives -- they are searching for answers and explanations.

This is a long month. April will be spent with factions calling each other names and making accusations about being "bought off" by special interest. The best approach to "Autism Awareness Month" might be to ignoring it.

Wednesday, March 24, 2010

Computers and Conferences

The ASA has said they want presenters to upload files as PowerPoint slides, asking that their laptops and equipment be used at the Dallas conference this summer.

Am I the only person most comfortable using my computer, with my keyboard quick keys and usability settings? (I see 20/400, so I magnify the Mac screen and have shortcuts for routine tasks coded in AppleScript and Automator.)

My computer has a name. I know, it's silly, but my computers are named for specific cartoon characters. The server and printers are also named. I think of tasks in these terms.

In a public space, I rely on the security of the familiar. Even when I speak to hundreds of people at a conference, I drag Wakko along. He's tweaked for my use. Maybe it's too weird. I can even tell the difference between Mac keyboards, since keys "travel" and "bounce" differently.

I like my computer. I don't like using other systems. I hate it. I also write on a specific type of paper, with a specific brand of mechanical pencil.

Oh, well.

Monday, March 15, 2010

Autism Genes: Better Test May Help Screen Causes - ABC News

Autism Genes: Better Test May Help Screen Causes - ABC News

I always find myself torn with stories like this. The part of me that embraces science would prefer scientific ways to diagnose individuals and count autism rates. Yet, I also wonder what becomes of such scientific abilities. The issues that immediately come to mind include:

  • Would parents eventually use genetic screening to avoid raising children with autism disorders?
  • Would insurance companies cover these tests, possibly including this with other genetic screening?
  • Would the government, which must pay for accommodations, use this test for less than ideal purposes?

These are things I ponder. I don't have answers, but we are getting closer and closer to having to address serious ethical and social issues associated with genetic screening. We have already witnessed what happens with Down Syndrome screening.

Wednesday, March 10, 2010

Neurodiversity Movement

The notion of "neurodiversity" (ND) seems deceptively simple: we should accept that brains are "wired" differently and embrace these differences.

Unfortunately, what seems logical and reasonable is far more complex in practice.

I know my mind is different. I have a high IQ, which is a positive difference. I have the "characteristics" of high-functioning autism. I have migraines and was treated for seizures. In other words, I'm certainly an example of neurological difference and diversity. So I am not about to advocate for not tolerating / accepting / embracing the differences my own brain represents.

Of course, "tolerating" implies putting up with an inconvenience. This is what my wife does on the bad days -- tolerates me. Trust me, there are plenty of days when tolerance alone is a big request.

But I cannot, not with any conviction, write that we should not be seeking the causes and treatments for many neurological conditions. I have seen Rett Syndrome and childhood degenerative disorder. Both conditions were horrible. I don't think that any other word can describe these conditions. While Rett can be mild, and some girls "recover" partially with age, the pre-teen I observed affected me emotionally. I realize that is me passing judgment on another's quality of life, but I can appreciate why the parents of such children would want a cure.

I know tests for Down Syndrome have reduced the number of people born with the condition. Isn't that a form of euthanasia? Would it be better to prevent or repair the chromosomal damage? Honestly, these are issues that do trouble me.

If a test for "autistic traits" existed, that would concern me. My differences are valuable. My mind might be different, but those differences give me insights others might not have. Eliminating forms of what we call autism would remove individuals with special insights from our society. I'm convinced there is a reason autistic traits exist.

Yet, I cannot tell a parent that he or she is wrong to want the worst aspects of developmental disorders eliminated. I do understand how horrible it must be to watch a child lose motor control, communication abilities, and so much more. But, then I consider brilliant minds in less than perfect bodies. A body is a shell, a tool for interacting with the world. It doesn't have to be perfect.

I wish I could embrace the ND movement completely, but somehow it seems too simplistic at times.

I'd change some aspects of my mind and body if I didn't have to sacrifice my unique abilities. That doesn't mean I suffer self-loathing, as some ND "radicals" have suggested. No, I simply do not see positives to migraines and seizures. What's wrong with wanting to know how and why these conditions exist? What's wrong with not wanting seizures?

This is a tough issue for me. There are no easy answers, but it's hard to see the positives to some conditions.

The most radical of the ND movement do not want any research into causations, treatments, or cures for various neurological conditions. They want to avoid any potential for euthanasia or genetic therapies that might eliminate differences. They seem to celebrate autism spectrum disorders. I'm not sure I'd celebrate autism -- as I've written before. I accept that I'm different, but I don't take pride in it or want to celebrate it. I'm simply different. Everyone is. I wouldn't mind knowing what makes me the way I am.

Neurologists are always going to search for clues to brain development. That's what they do. Should we stop science because of what it might discover? Should all funding be shifted to other projects, away from science? Sorry, but I definitely don't want that outcome.

I'm all for funding science. The more, the better. It's what we do with what we learn that I worry about.

What I want to see happen is more individuals with neurological differences included on advisory boards, institutional review boards, and research committees. Those of us who are different must be included in the research planning and implementation. I think the ND movement is a reaction to not being heard. With a voice, a "seat at the table," maybe the tensions between parent-advocates and self-advocates would abate. Such tensions will always exist, but reducing them would be a nice change.

Tuesday, March 9, 2010

Junk Mail

I am somehow on a "Generation Rescue" mailing list. I have no idea how this happened, but it means I am learning just want the snake oil industry is pitching to parents:
Children's Liver Restorative Kit
The foundation for any detox program is the body's hardest working organ - the liver.
The Kid's Liver Restorative Kit opens detox pathways.
Benefits include a decrease in aggressive, explosive anger and more appropriate social interactions.
2 month supply for average child.
$99 with Discount for Generation Rescue parents (Savings of $28)
Wow, you save $28 on a magical cure for aggressive behavior. Improved social interaction, too! What a deal!

I'm receiving offers like this once or twice a week, now. One offered a hyperbaric chamber for only $5000. Another great bargain. Sorry, but for half that price I can get the hot tub I've always wanted.
Yes, I find this all quite disturbing. Then again, I do like nice heavy comforters in the winter and Generation Rescue has a great deal on something called a weighted quilt. I saw weighted teddy bears at a conference and loved how adorable they were. But, I don't think they'd "cure" me of being me.

Can't wait for next week's special online offers. Some definitely make me laugh, others make me want to cry. At least I'm learning what it out there.

Monday, March 8, 2010

Traditional Gatherings

I had a student this week who mentioned her 10-year reunion was approaching. Was asked if I went to mine. Nope. No reunions, no proms, no formal dances. No grad party. "Did you do college commencement at least?" Nope. Not USC, not CSUF, and not UMN. "Wow. Don't you have any friends?" Not sure the two are connected… I'm just not into traditions, I suppose.

I guess I should feel left out or something. But, I have a wonderful wife, my cats, and a good life. Not having to please anyone, I've found that the friends I do have are pretty amazing.

No, I never did (or will) fit in with social events. People who know me understand.

Sunday, March 7, 2010

Hope vs. Action

I was watching a television spot that included the line, "She still has hope an employer will call."

Hope is passive. It should never be the only approach to a problem. Hope is not a strategy.

I understand the role of hope and optimism. Every time I send a portfolio to a potential employer, I hope it is read. I hope the institution contacts me for an interview. You do need hope to keep on the job market. You also have to believe, or better yet know, that you are the ideal candidate for a company or organization.

But, planning and effort are necessary, too. Not merely on the job market, but in any pursuit.

I sent out two portfolios this week. That's in addition to three dozen previous packets, some with 50 pages of content. And there will be more sent over the coming months.

The same is true of writing. You send dozens of manuscripts out and know that you can never stop submitting works. Yes, you hope to be published, but if you aren't sending out works there's no way to take advantage of opportunities.

Sitting around thinking you're good enough or even gifted enough to "deserve" success is pointless. Do something. Prove through effort that you will make the most of circumstances.

I am not going to sit around waiting to be discovered. I'll make sure employers and publishers know I'm serious about success.