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!

Friday, September 4, 2009

Babies are SO smart!

Don't you love it when some important person comes out with a book or theory that says just what you've been thinking for a long time (or maybe even talking about, but no one seemed to be listening)?

Recently I have heard two different discussions on Public Radio about the surprising intelligence of babies. It isn't just me and it isn't just grandmas everywhere - Babies really ARE getting smarter! Why didn't they listen to us?
I have also been reading about the relatively new idea of neuroplasticity. (See: "The Brain that Changes Itself" by Norman Doidge). It isn't just babies - we all have a lot more ability to learn and change than we've ever been given credit for.

I won't bore you with stories about my amazingly smart grandkids and all the cute, clever things they say and do. Suffice it to say, they amaze all of us on a regular basis - and we love it!

But what does this mean to all of us? For one thing, it underscores the importance of early stimulation and ongoing challenge to further intellectual growth and development. It also means schools that prepare teachers for our classrooms have to be on top of all ongoing research so that teachers are up to speed when they enter the classroom, and not simply doing things the old way - or the way they were taught.

It means we can never truly measure a child's intelligence, should never, ever give up on a person's potential, and should do away completely with the long-standing practice of labeling a child in order to provide some extra services in our public school systems.

Thinking about the many kids I have known in special education programs, and especially those who never quite qualified for such programs (it is embarrassing to say we considered them not "educable") and putting the reality of their early lives up against the early experiences of, for instance, my own grandkids, we have done these kids with "special needs" a terrible injustice. Because we vastly underestimated their intelligence and were stuck in our old ways of thinking about the brain, we did all the wrong things. In some cases, we removed those who were the most severely impacted by a disabling condition such as autism or Down syndrome from their homes and communities, placing them in sterile institutions where their basic needs were met, but not much of anything else was provided - during those critical early years, and possibly even for the rest of their lives!

Or maybe we told their parents to take them home and love them. Don't have unrealistic expectations for them, because they might never talk, walk, read, write, ride a bike or whatever. Hoping for more, or allowing yourself to think there might be an intelligent person locked inside, would only lead to disappointment and frustration.

At more than one point in my teaching career, I was accused of building false hopes in parents of kids like this. But the truth is that our system is set up to build false despair. We don't give the kids or their families enough credit for what might be possible. Sure it takes love - lots of it - and of course patience. (How often have I heard "You must have so much patience to work with kids like that!")?
But unless we combine that with sincere belief in a child's potential to learn - if we just find the right way to "teach" - we are failing that child and their family.

All the exciting new research says babies are soaking up information all the time, and if something tragic happens to damage a particular area of the brain there are many, many ways around that impasse - and the brain will do all it can to find one of those ways. We can't ignore this. It's a huge paradigm shift and means so much for all kids, but especially those who carry labels that might indicate learning challenges.