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. 


Unknown said...

Excellent post. I hope you get some other speaking engagements.

jonathan said...

thanks, hopefully i will

Shanti said...

I'm glad you got to get your side of things out - and it seems you did so amicably. the 'have your cake and eat it too," idea is interesting. I often hear parents say they don't want a cure, but at the same time don't want the autistic symptoms. I think they are just trying to say that they love their kids even if there is no cure.

John Robison said...

You continue to speculate on how someone like me could possibly have an autism diagnosis. While I don't disagree that I have done things you say you wish you could do, that does not mean my life is free from disability. You just don't see it, particularly as you focus on my accomplishments not failures. Yet in your own life you dwell so much on failure. Why is that? Might there perhaps be a better outcome for you with a different state of mind? You say in this post that you accept to some degree the reality of how you are (just as I am how I am) and that is not likely to change in your lifetime.

Here is another interesting point to ponder. I was first informally diagnosed with Asperger's by a therapist friend, and that was followed by a more conventional diagnosis from a local psychologist. Later, I was re-evaluated using the ADOS at Harvard, Beth Israel Hospital, and the University of Pittsburgh autism center. Interestingly those ADOS evaluations spanned 8 years and my scores did not change materially, even as my social skills improved markedly.

It's also noteworthy that I've taken part in many biomarker studies that put me in the autistic group, even as within that group we cannot separate a person like me from a person who is non verbal. But it's that way with other cognitive tests, with the general population. It's long been said that there is no discernible difference between Einstein's brain and yours or mine.

Nobody is asking you to love or even like being autistic. I don't like many aspects of being autistic, but I recognize it's reality and I make the best of it I can.

jonathan said...

John Robison you say: While I don't disagree that I have done things you say you wish you could do, that does not mean my life is free from disability.

In this interview: you state:

Even though I’m not a disabled person by any means today, I would say that the social challenge is a characteristic of disability that I have not been able to overcome. I’ve only been able to circumvent it a bit and do my best with it. That’s OK, but if you ask me what the hardest thing for me is about autism, that’s absolutely it.

Which is it? Are you disabled or not? You can't have it both ways. I'm going not by the statement you made in the comment to me just now, but your statement in your interview with Steve Silberman where you state that at present you're not a disabled person. It would seem to me in order to qualify for an autism diagnosis you have to be disabled. Perhaps there's an explanation for it, but I don't know where it is.

Yes, I dwell on failure, because I've had so much of it in my life. My life has been quite different from yours as has 99.9% of everyone else diagnosed as autistic. You're not the first person to claim I'm disabled due to a self-fulfilling prophecy and I doubt you'll be the last. That's the real problem I have with you and others in the neurodiversity movement, that acceptance, accommodation and, and different attitudes will solve everything. As even you've acknowledged on occasion, autism is a debilitating condition in those who have it, we need more research to find treatments and even a cure someday. Attitudes won't change anything. As the old saw goes confidence comes from competence. It's usually the people on the mildest end of the spectrum (or people self-diagnosed) who make these statements about people such as myself and others far more severely on the spectrum than I am and I don't like it. I guess you talk more about those biomarkers in Switched On. In spite of the differences we've had in the past, I did order that book and I look forward to reading it.

John Robison said...

Jonathan, I do not say your disability is a self fulfilling property. I understand you were always autistic, and always disabled by autism. What I suggest is something different. From that reality, you can say "Woe is me, I hate this and I hope for a cure" which is what I see you doing. Or you can say, "OK, I've got this major disability, and it sucks, but I am going to push that aside to the extent I am able and go as far in life as I can anyway."

A positive attitude will never take away your disability but it may open new doors for you, and make you a happier person.

You seem to fixate on statements like the one you cite in the Silberman interview, even as I speak widely about ways I am disabled today. For example, in that same interview I said:

Some traits that cripple me in one way have been a gift to me in another way.
* and *
The social disability is the most challenging. As a middle-aged adult, the biggest danger to me is falling into a serious depression. That happens to me more or less exclusively as a result of my social disability. That’s the hardest thing for me. I can only go so far in remediating that.

Those are two examples. My writing has plenty more, there and elsewhere. The thing is, I can be disabled in specific ways and in certain circumstances, but not be disabled all the time, everywhere. I suggest the same is true for you. For example, you do not seem disabled conversing with me here.

My full statement in that interview sums it up. I'm not a disabled person even though I have specific disabilities. I guess you could say that's a mind set. I have a bad knee too, and I could just as well say I'm a disabled person because of that. Yet I don't, because I organize my life so that particular disability does not hold me back much. But if I were in a burning airplane, I might very well die because of my disability, and it would not be so easy to dismiss it then.

You may say "My disability is worse" or "My disability is more real." Maybe it is. To you. All I'm suggesting is that you may get farther and be happier with a more positive attitude, given we can't change how we are.

John Robison said...

I'd like to address this comment of yours: It would seem to me in order to qualify for an autism diagnosis you have to be disabled. Perhaps there's an explanation for it, but I don't know where it is.

Here is the explanation. When you are screened with the ADOS you are asked to do many different things. You solve puzzles, interpret what people mean, interpret and explain things yourself . . . the degree to which you do (or don't do) those things is scored by the ADOS screener. If your scores fall below a certain level of capability, you are said to be autistic.

Whether you say "But I'm crippled" or "But I'm exceptional" does not enter into it. You can feel you have great social skills or none at all, but ADOS assigns a score and the diagnosis is based on that.

To get an ADOS evaluation, a person has to discuss a problem with a psychologist, and the psychologist has to believe an autism screening is warranted for the insight it might provide. That problem might be something obvious like one job loss after another or even stealing trains just to take them for a ride. Or it might be something invisible, like trouble in a marriage.

This isn't a contest. I am scored above the ASD threshold on ADOS and so it seems are you. Maybe you are more disabled than me in some things. Maybe you are more gifted in others. That speculation is pointless. What we should focus on is what I've suggested before - encouraging the development of therapies and tools to relieve the ways in which we suffer, and work for societal acceptance and accommodation to have the best quality of life as we are now.