Saturday, January 28, 2012

Autism: A Day with the Experts

We are so lucky to live in Madison.  Not only for quality of life here (yes, even in the winter), but also it is a wonderful place on the cutting edge of Autism research, outreach and information.  And not but 15 minutes from our house is the Waisman Center, UW-Madison.  They do so much for children with disabilities as well as Autism.  This is where Jonathan received his official, medical diagnosis. We also participated in a research study there for language.  Today they, and the Autism Society of Greater Madison, hosted their Eighth Annual "Autism: A Day with the Experts".  And I seized the opportunity to go.  (I mean, 15 minutes from my house, for crying out loud!)

The event was billed "Participants will learn about some of the latest advances in autism research, and will hear firsthand from a panel of experts - individuals diagnosed with ASD and their families."
Here is my quick rundown (and you can check out the event's link above for more info)

- Andrew Alexander, PhD spoke about the brain and reading MRIs, and the research in the differences between typical people and those with ASD.  It looks like there may be some true differences, with high success rates in reading their research of these differences.  There is the potential to use this (the MRI / brain scanning) as a way to assist diagnosing ASD.  However, it seems like much more research needs to be done.

- Leann Smith, PhD, a family researcher, spoke about transitioning together as a family when your child reaches the age of adolescence.  While this scares the living bejeezus out of me (Jonathan in high school?!  Jonathan as a teen?!)  it was very interesting to hear about the levels of stress parents have when parenting children with ASD (higher levels than those with children with any other disability!)  And, how not only does the child need to be serviced, but the whole family is affected and could use support. Also, I learned how little support there is for those who leave the school-system and enter adulthood. 

- Linda Tuchman-Ginsberg, PhD spoke about evidence-based practices, and how they best work with your child.  This means a whole team effort, as well as a full understanding, support and follow-up with teachers following IEPs, clear IEP goals, etc.

- Lastly, there was a panel, which included 2 people with ASD (one a recent high school grad with Asperger's, and the other a 54 year old man, who was diagnosed in his 30s), 2 siblings (one a fifth grader with an older brother with ASD, and a 20 year old with younger brothers with ASD), a Grandmother and a Father.  Lots of great insight, especially coming from those with ASD, who so eloquently spoke from their first person perspective.

Personally, one of the most interesting things about today was looking around the room and seeing what a diverse crowd had attended this event.  And that was more evident at lunch in the interesting people I had the privilege of sharing a table with.  I met an Occupational Therapist who works with many kids with ASD.  A young twenty-something who has a 6 year old brother with ASD, who wanted to learn more so he could better help his sibling, as his parents were doing nothing.  A couple, that lives 2-plus hours away, that have two sons on the spectrum and were just searching for support and research information.  And a gentleman who I think works in nutrition (we discussed food and the gluten-free diet).  In the seminar, I sat next to a woman who is a social worker, servicing more and more children with ASD.  All of us have people with ASD in our lives.  All of us wanted to learn more.  And really, there is still SO MUCH MORE to learn, and discuss.

I'm really glad I took the efforts to go today.  Another example that we really are not alone.  We all share similar journeys.

When I got home, Jonathan had a make-up therapy session.  Since this is not typical in his weekend routine and usually I am not home during therapy time, he really wanted me to be with him.  He would yell, "Mommy, downstairs!"  So I was able to join him and his therapist in the 2 1/2 hours of ABA therapy today.  And while I had plenty of other things to do, I was so glad I was able to be with my boy and watch how much he has improved. I had a blast with him and his therapist.  It was a good refresher for me in my appreciation of all of those that are helping our boy.

Feeling much gratitude for today.  (but I am beat.  ha!)

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