Wednesday, September 30, 2009

Autcom impressions

I just returned from the annual get-together of the Autism National Committee - - and am filled with awe and inspiration.

What sets this particular group apart from the rest is that it's run by and for people with autism, with a strong focus on all that is good and positive about being somewhere on the autism spectrum. I have been attending their conferences for several years now and have never been disappointed in any way.

Rather than go on for far longer than anyone would want to read, I will try to summarize, and of course that means I am running the risk of missing something important. My best advice: visit the web site; make plans to attend the next conference, October 15 and 16, 2010 in Milwaukee, Wisconsin. (Practically in my backyard - can't wait!)

Three very strong audio-visual presentations included (1) "The Power of Words" - a stirring reminder that how we talk about people, ourselves and others, means a LOT. Mayer Shevin wrote the original ("The Language of Us and Them"), and Judy Endow put together this powerful PowerPoint presentation, with music composed and played by her son Daniel. (2) An impressive and amusing travel documentary in the works featuring two long-time FC users, Larry Bissonnette and Tracy Thresher, who recently traveled with a camera crew to such far-away places as Sri Lanka, Japan and Finland. Both of these amazing men have been typing for a long time now, currently needing little or no physical support - and both are starting to talk by reading what they have typed. It's amazing! (3) Another documentary in progress, the joint project of Rob Rooy and DJ Savarese. The segment we viewed showed a Readers Theater presentation, written and directed by DJ, telling his life story, and put on by his friends and peers at Grinnell High School in Iowa. That young man has talent, and quite a story to tell!

Exciting news from the research field includes a study from MIT showing the high (but often hidden) levels of stress and anxiety that people with autism often experience. Matt Goodwin shared a new way to monitor these varying states of arousal using just a simple wristband to transmit the information. The costs are still far out of reach, but the potential is there for us to have a much better understanding of what might be going on inside.

Along similar lines, Dr. Margaret Baumann talked about exciting new developments at Massachusetts General Hospital, where she has been a pediatric neurologist working with people on the ASD spectrum so long that most of her patients are now adults. There's a large grant now available to improve medical services for these adults, along with a new understanding that many of the behaviors we associate with autism just might have a medical origin. Such issues as mitochondrial disorders, gastric reflux and other G-I problems are getting looked at much more closely.

Jessica Butler reported on the use of restraints and seclusion with kids in the schools, preaching to the choir here, but reminding all of us that we might have come a long way toward inclusion, understanding and acceptance - but we have a very long way to go!

Allen Kurtz reminded us not to worry about the words "science" and "evidence-based" practices, but rather worry about those who use such terminology to promote their own self-interests. When new evidence is presented, those who are "stuck" in their own ideology often can't change their theories to fit the evidence. Instead they tend to dismiss what is happening before them. It's time for a paradigm shift with regard to those who type to communicate.

Many individuals gave presentations during the breakout sessions, telling their individual stories. It's impossible to attend all of these sessions, and just as impossible to adequately tell their stories here. But I think it's safe to say in summary that people on the autism spectrum are taking charge of their own lives, and changing the minds and hearts of those around them. There is a unity among all of them (and those of us who love and support them) that has the power to change the world.

Sure wish you could have been there to experience it first-hand. Maybe next fall in Milwaukee!


  1. I am reluctantly rejecting a comment that was submitted to this posting because a specific person was mentioned by name, with comments that might be hurtful.
    Please do understand - looks can be VERY deceiving. Part of what we are hoping to change here is the way all of us tend to judge a person by their appearance. Most of the young people I work with find themselves inside bodies that don't work the way they want them to. And I am guessing most of us would have many things we find undesirable about the way our bodies LOOK!

  2. Hello. I am the person whose post was 'reluctantly rejected.' I apologize most profusely for making comments about an individual that many would consider hurtful and/or defamatory.

    My remarks were prejudicial and unwarranted, and for this I cannot apologize enough.

    Everyone is a child of God, Mother Nature, etc. and has been put on this Earth for a reason. Thank you for reading.

  3. You are a beautiful person. I hope you continue to follow some of the discussions. Thank you for your sincerity and humility!