Thursday, March 10, 2016

Will neurodiversity protest and war against the Simons Foundation genetic database?

Going back to the days of Cure Autism Now in the late 90's and early 2000's, neurodiversity proponents have protested research into the genetics of autism, claiming that it would result in a prenatal test that would lead to mass abortions of autistic fetuses, such as what takes place with Down's syndrome, spina bifida, and perhaps other conditions that are far easier to detect in utero.

Amanda Baggs and Laura Tisoncik, proprietors of, had on the main page of their website a cartoon depicting a trashcan with the letters CAN written on it with an abortion clinic building in the background with a crude drawing supposed to represent an aborted autistic fetus with the caption "the real meaning of autism prevention".  Ari Ne'eman has stated that he fears genetic research because it could lead to genetic testing.  John Robison in a speech to IMFAR expressed concern that so many autistics he knew worried about these tests, though he acknowledged the possibility that it was the furthest thing from the genetic researchers mind.  Meg Evans (writing under the pseudonym Bonnie Ventura) predicted in 2005 that in ten years' time there would be a prenatal test for autism.  She proved to be a poor prophet.

Years later, Autism Speaks in collaboration with Google initiated the Mssng project to find missing autism genes and developed a database of autism genes which all researchers would access.  This resulted in a flurry of protest on twitter and perhaps other social media.  #notmissing hashtags popped up on neurodiversity tweets and John Elder Robison joined in the fray.  Neurodiversity took offense to the notion that they could be missing and that Autism Speaks was somehow insulting them.

What's interesting is in that all of the years that Neurodiversity has been ranting and raving against CAN and then Autism Speaks, I've never heard a peep out of them about the Simons Foundation or the Simons Foundation Autism Research Initiative.

James Simons is a mathematician who applied his research findings to the stock market and created an extremely lucrative hedge fund that averaged more than thirty-five percent annual returns.  This, at least in part, resulted in him accumulating a net worth of around 17 billion dollars, making him the 88th richest man in the United States according to the latest Forbes 400 listing.  He has an autistic daughter named Audrey who I think is in her twenties now and is at the milder end of the spectrum (anyone is welcome to correct me in the comments section if I'm wrong about this).

With his huge wealth he created a foundation in his name to do research in education, health and other matters.  This included something called the Simons Foundation Autism Research Initiative (abbreviated SFARI).  Though Autism Speaks is a far more prominent and well-known organization than SFARI, Simons is a larger funder of research than AS is.

What is noteworthy is this story about SFARI's introducing the new genetic database which is certainly not dissimilar to the one that Autism Speaks created with Google's help and from neurodiversity's point of view could just as easily result in a prenatal test and abortion of autistic fetuses.

As can be seen  from this ten year old article in the wall street journal Jim Simons gave geneticist Michael Wigler a nearly 14 million dollar research grant to find genetic causes of autism.  They were also friendly, vacationing off the coast of Greenland together.

Wigler's (as well as colleague Jonathan Sebat's) research is interesting in that it seems to find that a fair amount of autism is caused not by genes that are adaptive and stay in the population, but in spontaneous mutations that are not inherited.  This provides some evidence against the neurodiversity dictum that autistic genes stayed in the population because they offered some sort of advantage and that autism is a natural variation that has always stayed in the population, or that elimination of autism would result in a sort of genocide.

So, one has to ponder why neurodiversity is not at war with the Simons Foundation.  Why aren't they calling out Jim Simons as a greedy tycoon who takes money away from autism communities, so that services, research on AAC, and other pet projects of ASAN aren't being done?  This is a complaint that ASAN has lodged repeatedly against autism speaks.

Gadfly must concede that one of the differences between Autism Speaks and the Simons Foundation is that in order to obtain revenue, autism speaks must engage in advertising.  Some of this advertising has been offensive to those in the ND movement.  They were angry about Allison Singer's dumb remarks about driving herself and her daughter off a bridge, they were angry at Suzanne Wright's statements that autism families were not really living (resulting in Robison's resignation from their science advisory board), and they were horrified at the I am Autism video.  The Simons Foundation is independently wealthy thanks to all of Jim's billions and they don't need to engage in this sort of publicity so they won't provoke the ire of ASAN, GRASP, and the rest of ND.

One of the problems with this line of thought though, is that genetic research, particularly databases which all scientists will have access to, regardless of whether it is funded by Autism Speaks, the Simons Foundation or anyone else will have the same result.  If Autism Speaks research could result in prenatal testing, so could Simons'.  If Autism Speaks are a bunch of ogres who are ripping off the autism community, then Mr. Simons is just as culpable.

Or perhaps the real answer is that neurodiversity doesn't really care about the issues of genetics or prenatal selection.  Perhaps they just have low self-esteem due to mental problems or this is just the type of people they are.  Perhaps Autism Speaks' advertising only reminds them of what they hate in themselves.    

Tuesday, March 8, 2016

Silberman ASA conference keynoter: autism society of america sells out to neurodiversity again

The Autism Society of America is the oldest autism organization in the United States.  They go back to 1965 when Bernard Rimland and Ruth Christ Sullivan decided that an advocacy organization was needed.

I joined up with them in the early nineties, well before neurodiversity was invented or before almost anyone in the united states had even heard of Hans Asperger and there was such as thing as "Asperger's Syndrome".  I went to one of their picnics and a couple of their board meetings that were open to the general public.  I spoke on a panel in the very early nineties right around the time operation desert storm started in Iraq.  There was a good thing about being involved in this organization and being able to go to some autism related meetings.  I met my friend Jerry Newport shortly after that, after he'd seen Rainman and decided he was similar to a real life Raymond Babbit with his mathematical savant skills.  In those days, autism organizations were dominated by parents and Jerry and I would be the only ones on the spectrum who attended the meetings.  This made me feel a bit awkward, but the parents were always interested in my perspective.

Not long after this, Jerry, some other people, and myself formed AGUA (Adult Gathering United Autistic) in 1993, an organization for autistic people to meet monthly and socialize--probably the first group of its kind ever.  This organization would provide the inspiration for the group RASCAL in my novel, the Mu Rhythm Bluff.  More significantly, the group provided the inspiration for the movie Mozart and the Whale.  I went to some of ASA's conferences and met some nice people and had a few good times there.  I would read their newsletter, The Advocate, when it came out.  So to this day, I have some nice memories of ASA.

Another good thing about ASA was they included autistic voices in their perspectives.  Temple Grandin served on the board of directors.  She was followed by old school advocate Tom Mckean who disagreed with neurodiversity and favored a cure for autism.  Some years later, when Stephen Shore arrived on the scene and began his ascent as conference mega superstar, he became a board member also.  This made them immune to neurodiversity's hate mongering complaint that they've repeatedly leveled against autism speaks about there being no autistic board members prior to Robison's appointment to their science committee and Steve Shore and Valerie Paradiz's appointment to the board of directors.  

As neurodiversity's tentacles and influence began to get a footing in the autism world, all that would begin to change.  Red flags waved as the Autism Society of America endorsed Ari Ne'eman's appointment to the National Council on Disabilities, despite protests from The Age of Autism folks, Jon Shestack, and others like myself who loathed neurodiversity.

Next they had Alex Plank as a keynote speaker at their annual conference.  This is an individual who has stated that autism is a good thing.  He bans anyone who disagrees with neurodiversity or levels any sort of criticism of him from his website,  Even worse, when one of the members of Wrongplanet, William Freund, threatened to murder people, Plank did not report this to the authorities.  Freund carried out his threat and murdered two innocent people before committing suicide.  Another member of wrongplanet, Hans Petersen, murdered his dermatologist.  Even though the relatives of the people Freund killed sued Plank, another member of wrongplanet threatened to go out and murder people with a gun and Plank did not delete the post and this person remains a member of WP in good standing.  When I emailed Plank asking him to report this person to the authorities, my query was unanswered.  I contacted the FBI and only then did Wrong Planet delete this person's post.

As you can see from the above screenshot photo, they're having their 2016 annual conference in New Orleans this summer and their keynote speaker is none other than the great Steve Silberman.  The individual who stated that an autistic brain compared to a non-autistic brain was no more broken or different than a computer that had linux as its operating system rather than Windows.  The man who stated that disability is part of the human experience and that we all became diaper wearers, so it was no big deal that some severely autistic children are incontinent.

Silberman is to be accompanied by a panel of autistic people for a discussion accompanied by his keynote speech.  I wonder what sort of autistics these people will be.  Will they be people like Landon Bryce who admit they are self-diagnosed yet say autism should not be cured and that people who support autism speaks and a cure are eugenicists?  Will they be people like Nick Walker who states the same thing but is completely functional and is able to work and get married and support a wife and a child?  Or will they be people like Roger Kulp, who's intelligence is intact and verbal, yet who have suffered tremendously from their autism and want to let the world know so that we can pursue treatments and maybe *gasp* even a cure?  My guess it will be more likely the former rather than the latter.

Apparently it is about the bottom line and almighty $$$$.  Silberman's book made the NY Times Bestseller list and he's still widely known in the autism world and they apparently want money in their organization rather than doing the right thing.   

I believe an autism society should not support neurodiversity.  They should say  someday we hope we can have a cure and treatments for this disease and it will be a thing of the past.  Someday we hope there won't be a need for conferences like this.  That autism will no longer exist and defenseless children will no longer be crippled and sick.

I suggest people boycott the conference this year or boycott ASA until they get their act together and stop supporting neurodiversity.  Or, at the very least, walk out of the auditorium as Silberman and his merry band of mischief makers who claim to be autistic start giving their spiel. 

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.