My Cold Spring Harbor autism workshop experience

I pulled up in front of the house around four in the afternoon after being gone for a week in Cold Spring Harbor and I saw at once that the huge plumbing disaster which had occurred right before I left, had not only wiped out our bank account but had destroyed our front yard as well. The lawn was now a stretch of yellow straw and the two trees, which stood near the disaster area, were traumatized, their leaves shriveled and branches drooping. I could relate.

​I knew Miriam would not be home. She was away on a trip to Paris (!) with her grandmother Marciarose. This was Miriam’s grandparent’s gift to her for her Bat Mitzvah. Gabriel rushed to open the front door and gave me a big hug. His hair seemed longer than ever, covering half his face as he offered to lug my suitcase up the stairs for five dollars. I could hear Dov in the bathroom off the front hall, making some complaining sounds; maybe Karen (Dov’s aide) wouldn’t let him play in the water with his beads, or maybe she insisted he go to the bathroom when he didn’t feel like it.

​Gabriel started chatting from the minute I entered the house, telling me about all the things that had happened while I was gone. With his help I lugged the suitcase upstairs. I flopped on the bed and put my feet up, it had been a long day; Gabe kept chatting. Dov had been barfing, he told me, Dov was sick for two days, but he was feeling better now and he ate a whole bunch of French toast for dinner. Thanks for the report.

​While I was away it was hard to get messages because you couldn’t get a phone signal at Cold Spring Harbor. The Banbury conference center where the workshop was held was quite remote, but beautiful. I’d found a spot where if you leaned over the railing of the wheel chair ramp to the house, you could sometimes get a signal for a few minutes. I picked up a message from Dov one night – he’d typed it out on his LightWriter device and my sister Sarah played it over the phone to my voicemail:
​"Hi Mom. Its Dov. I just wish you were here. I really miss being with you. Do you miss me? I want you to email me soon. Goodbye. I love you." I played it back twice because I enjoyed it so much.

​I was too tired to even think about unpacking. Later, when I needed my toothbrush, I might reconsider - or not. Gabe was showing me the artwork he'd made at his summer art class when Dov appeared in the doorway, smiling. He joined us on the bed and listened to Gabe continue on about his week. After a while I sat up and scooted next to Dov with his LightWriter. This was our conversation:

​Portia: I really missed you! What’s been going on? Anything you want to tell me?
​Dov: I am glad you are home.
​Portia: Thanks, I’m glad to be home too. How were you while I was gone? Did you have a good week at school?
​Dov: Pure work.
​Portia: Oh yes, I heard you were taking tests at school. Anything else?
​Dov: You love your Dov.
​Portia: Yes I do! (hug, hug)

​How much work it was for Dov, compared to Gabriel, to get a few sentences out. And yet how wonderful it was to be able to hear what Dov was thinking at all. For every sentence Dov laboriously typed out, Gabriel spoke dozens, maybe hundreds of sentences effortlessly. How precious those few words of Dov’s were, and all the more so knowing that we might never have been able to experience any of his words at all if we had not found Soma, and through her a way to help Dov begin to communicate at the age of nine.

​The workshop I attended at Cold Spring Harbor was their first one on autism:
​Click Here

​The course was organized and taught by Pat Levitt, Sarah Spence and Dan Geshwind. There were several fascinating lectures, among them one from Carlos Pardo who taught us about neuroimmunology and shared his research in which he and colleague Andrew Zimmerman, describe chronic cell activation (inflammation) in post-mortem brain tissue from autistic individuals at all ages. We also heard from Isaac Pessah from the MIND Institute who has been studying environmental toxins and their effects on the developing brain. A number of pesticides as well as flame-retardants effect neurotransmitter receptors in the human brain. It was a sobering talk that left us all pondering the terrible possibilities of the many toxins which could be contributing to autism.

​We also heard from Jonathan Sabat, a genetics researcher who in 2004 discovered a new and very important genetic mechanism that can lead to disease, called ‘copy number variant’ (CNV) in the general population. This year he published results of a study that shows an increased CNV in children with autism from singleton families (one autistic child). In a nutshell this means these children are more susceptible to genetic disorders. I am still reading paper about CNV to try to understand it better, i.e. how do you get increased CNV?

​The good news is that of the three kinds of autism for which we know the cause: Fragile X, Rett Syndrome and Angelman Syndrome, all have made major leaps forward in research toward treatment. Researchers found the gene for Rett Syndrome in 2005, created a mouse model in which they recently reversed the neurological symptoms and they are now working toward applying this work in humans. The gene for Angelman Syndrome was discovered in 1997 and this year the mouse model of AS was rescued from neurological defects by gene therapy - human clinical trials will no doubt follow. Fragile X is the most impressive – the gene was identified in 1997, then the animal model was developed and in the past couple years the molecular basis for a treatment was developed, tried in the mouse model and human clinical trials will begin in 2008! Now we just need to figure out the “other autisms” and move even faster through the stages toward treatment...

​One thing that was really neat about the CSH autism workshop was to be able to work with a group of students just entering the field of autism research. I gave a talk and showed a video of Dov from ages 4 months to 13 years old where you can see his intact typical early social behavior, then the loss of this, then the many therapies we tried and finally Dov communicating again. I also gave the students a copy of my book. I believe I had an impact on the way they see autism. Here are some photos from the workshop: ​Click Here

​All in all I was glad I went to the workshop.

​Best wishes, -Portia

Posted on 06/25/2007 at 02:14:21

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