Saturday, March 5, 2016
My panel participation at Stanford
"Life's like a box of chocolates, you never know what you're going to get" were the famous words of wisdom pontificated by Forrest Gump. That's been true in my case also. Though I'm now sixty (a sexagenarian without the sex) my life in the autism world continues with interesting adventures. My latest one was an invitation a couple of months ago to participate in a panel discussion on autism at Stanford University sponsored by their chapter of Autism Speaks U, the university clubs that Autism Speaks sponsors.
I was nervous and apprehensive about the trip as I don't do well in travel situations and I wanted to save money by taking the train from San Jose airport to Palo Alto, but ended up biting the bullet and taking a taxi. Also, nervous about getting to the hotel at night, and not knowing what to do with nearly an entire day to kill in beautiful downtown Palo Alto. I did manage to kill some time walking around the area near where Stanford university is and explored it.
Another reason I wanted to take the trip is I have cousins who live in nearby Berkeley and I could spend an additional night and day with them after I finished my business at Stanford. They were also interested in coming to hear me speak on the panel. They were very happy to make the nearly 40 mile commute from Berkeley to PA and take me back to their apartment with them, so I wouldn't have to spend the second night in a motel.
The person organizing the event asked me for recommendations for other panelists and I gave them Roger Kulp's name, but there was no way they could afford to pay his travel expenses and I'm not sure he wanted to do it, so he declined.
They also invited well-known superstar Steven Shore who also expressed an interest in doing it. Steve is well known on the conference circuit and is able to command high speaking fees, but he's willing to waive them for the right cause. However, his travel expenses were also prohibitively high for this student group who only has limited funds.
So, there were three panelists, myself included. The other two panelists included Melissa Collins-Porter who has an interesting documentary in the works, called Aging Out which deals with the bleak prospects that autistic individuals over the age of 21 face when they age out of the special education system and have to face the cruel world. Melissa's autistic son is 16, so she's someone who has a loved one who is imminently facing this scenario. You can see her on my right in the above photo. She sat at the end so she could access her computer more easily when it was her turn to show a trailer from her documentary in progress. You can see it from the link.
The third panelist was Nate Majors, a young (24 years) man with autism who engages in self-advocacy. He's local to the Palo Alto area. His mom accompanied him to the panel. Nate is currently in an accounting internship at PG&E in San Francisco. He seemed to have a slight speech impediment, but is overall a pretty functional autistic. He's sitting on my left, a bit further away from me and Melissa.
They served some good pizza and bagels and I helped myself to a piece of pizza. It was a pretty good turnout, about 30 people showed up, mostly Stanford undergraduate students.
They asked some interesting questions, including some stuff about the cure debate. Nate did not want a cure for himself. Melissa did not want a cure for her son, though she seemed to want to end his OCD symptomatology and some other problems, so she seemed to want to have it both ways. Wanting to have your cake and eat it too as my former psychoanalyst used to say. I gave my more nuanced view as of late, stating that though I longed for a cure for autism, I realized it was not a realistic goal in my lifetime and repeated what Andrew Solomon stated in "Far From the Tree" that it was sort of like a debate about intergalactic space travel.
They also asked about what we felt people should know about autism and I stated I felt the media should know we are not all savants and we don't have these superior abilities that make us great with computers and will translate into a lucrative career and that we could not all multiply four digit numbers in our heads or knew whether a one-hundred digit number was prime or composite. That got a few guffaws from the audience. I also stated people should try to fix us up with dates and friends and this struck an amusing cord with the college students. Overall I seemed to elicit more reactions from the audience than the other two panelists.
Amusingly enough, one of the questions was from a quote of one of my favorite autism writers, John Elder Robison about how autism was both a gift and a disability and it was the fire that stoked creativity and also burned us and whether or not we agreed with him. A wry smile came to my face as the moderator asked this question. She had read Autism's Gadfly from time to time and that was how she had heard of me and wanted to invite me to be a panelist. I couldn't help wondering about the possibility that she had seen some of the scathing remarks I've leveled at Robison here from time to time and was trying to bait me. I tried to show some restraint, as I could easily get a bit carried away in any discussion about Mr. R or even a quote he had made. I stated that I did not agree with his quote and that autism was not a gift in most people but a horrible disability and 99.9% of us could not learn engineering without a college degree, start our own car repair business, get married three times, and write a best selling memoir. I again expressed skepticism of how Robison could possibly merit an autism diagnosis when he's stated that he no longer has any disability.
Overall, a good time was had by all. Though I did not completely agree with Melissa and Nate about a cure and neurodiversity, we established a rapport that evening and Nate expressed a desire to keep in touch with me.
I really detest traveling and flying on airplanes (particularly with the creation of the TSA in recent years) and that is one of the upsides of my lack of success as a writer and autism individual. However, success is a double edged sword. In order to get the word out, sell books, or whatever endeavor you want to do in the autism world, you have to travel, possibly all over the country or world, to become well-known. Temple Grandin, John Robison, and Steve Shore travel constantly to get their views out. So, I hope I will be afforded other opportunities like this in the future so I can get the word out about what a terrible movement neurodiversity is and that we need to do research to do things to help autistic people and eventually try to find a cure although that is not a realistic short term goal.
I guess I can't count on too many opportunities like this in the foreseeable future, but I guess I'll have to wait and see what mysterious candy flavor comes up in Gump's metaphorical box.