Saturday, September 3, 2011

having an interest in science but not the ability

In the better late than never department so typical of your humble gadfly, I’ve decided to comment on something John Robison said in his interview with Steve Silberman which caught my eye.
John Robison has been chosen as a member of the scientific advisory board of autism speaks as well as a reviewer for government research grants. When Silberman asked him if others with autism should be included in these roles Robison responded:

Yes. I have argued for having more autistic people on the boards, but it’s not obvious to me who those people would be. I don’t have a lot of personal knowledge of autistic people with an interest in science. Most of the people in the autism community who are critical of the policies of these various groups are not people with any real interest in science, or at least they don’t express the interest in their writing that I can see. Without an interest in science, they don’t have an obvious fit with the boards.

In the comments section, Michelle Dawson seemed to take umbrage at Robison’s remarks. She is an individual with autism who has published journal articles and has obviously taken a great interest in science of autism. In fact she has taken such a strong interest in science, we have seen that she is not above accepting charity from persons who she says "make her sick" and from an organization she claims ideally wishes a short future for autistic persons in order to carry out her scientific endeavors.

I was struck by this because I think of my own interest in the science of autism.

I have on occasion written posts dealing with scientific issues and I know Robison reads this blog. However, I have not written on these issues frequently. One of the reasons is that though I have an interest in scientific issues in autism, my disability has impaired me from pursuing them as vigorously as I could and obtaining the needed expertise to write decent blog posts on the subject.

I did not realize that I had an organic impairment in my brain until adolescence when the individual who was my psychologist at the time discussed these issues with me.

Not long after this, while in community college in the mid 1970s, I took an interest in this and I took a course in physiological psychology as well. After this, I tried to read whatever I could about the brain and later about autism. I read some more physiological psychology textbooks and purchased A.R. Luria’s The working brain. I wanted to major in psychobiology after I transferred to UCLA but had to settle for an undergraduate psychology degree due to getting C minuses in a couple of science courses. There was also the question of whether doing stereotactic surgery on animals would be too difficult for me. I had no idea at the time that MRI scans would be invented. I was crushed when one of the psychiatrists who evaluated me for autism noted that at age 21 I had essentially never had a job (or at least no job where taxes and social security were withhold). He took it upon himself to give me some vocational counseling. He asked me what I wanted to be. When I told him I wanted to be a brain researcher he stated, "You’re going to have to settle for something less than what you want to be." He suggested "manual labor" as an alternative career whatever that means. I never dreamed the irony that would take place more than three decades later when I would read Morton Gernsbacher’s extremely offensive piece with the multiple factual errors which I wrote about previously where she talks about autistics participating as researchers and the cavalier attitude she takes towards individuals such as myself who are too impaired to be scientists.

After college I continued to try to read about the brain and science in order to figure out what the defect was that had made my life so difficult. I read articles in various journals, such as the autopsy studies done by Williams et. al. that found problems in the cerebella of autistics, as well as postmortem reports done by Edward Ritvo and Margaret Bauman and Tom Kemper. It was very hard for me to concentrate and learn much more. My constant desire for twiddling (self-stimulation) coupled by my executive functioning problems made this a formidable task and I was unable to achieve the expertise in science and autism which I coveted.

A few years later, I read the study that Eric Courchesne had published in the New England journal of medicine on the smaller size of lobules VI-VII of the cerebellar vermis. I wanted to be his research subject. I got my wish and talked shop with him. I asked him a variety of questions and he seemed somewhat impressed with my limited knowledge. I wrote about this elsewhere as well.

All of this had been consummated by the spring of 1989, still some years before either Michelle Dawson or John Robison would take any interest in autism or receive their respective diagnoses.

In addition to having my autism and the constant desire to twiddle (self-stimulate) be disorganized and have a hard time applying myself, I was sidetracked in other ways as well. There were various times that I worked 40 hours or more a week. I also took an interest in learning computer programming. I became interested in fiction reading and writing and wanted to be a novelist. I succeeded in writing two (albeit non-publishable) novels. This, exacerbated by my disability, made it difficult to pursue my interest in science that Robison does not seem to think I have. He apparently has never read my essay which I linked to above. I also took an interest in more leisurely pursuits including poker, horse race wagering, tennis and skiing. I wanted to have a happy life with good times in spite of my disability.

Other things took place as well, the amount of research done on autism skyrocketed. It was hard to keep up. An ugly cult of vicious hatemongers called neurodiversity came to the fore. These despicable people appear to believe that persons with autism are better off being crippled and sick than being a healthy individual. I felt that I had to do research and work in order to outwit these people. The results are my article urging people to reject this philosophy as well as multiple posts on this blog. I will let readers judge how much I have succeeded in opposing these people.

Over the years, I have never forgotten my interest in the science of autism and the brain that could have the potential to find out what causes these problems and how they could be mitigated or cured. I hope to one day read more books and study more journal articles, but in sum, my disability and other things in my life have made that pursuit difficult if not impossible. Even though I lack abilities because of my disability, I still have the interest.

Does Robison believe I would be a poor fit on a scientific advisory board? I am not sure of the answer to that.

Is Robison himself a good fit? He is a high school dropout serving on the autism speaks advisory board where everyone else has an M.D. or Ph.D. He has made questionable statements on what has caused a rise in prevalence. He has suggested geek success as a legitimate scientific endeavor, which I took him to task on. He has shown ignorance rather than erudition in these statements.

The reason Robison gives for certain autistics not being a good fit is their dearth of writing on scientific subjects. What of Robison himself? How much has he written about the science of autism anywhere? In his books or in his blog posts?

As far as I can discern, with the exception of writing about his experiences in some TMS studies that Lindsay Oberman was doing and the post where he suggested geek success and one other thing as scientific endeavors, Robison has never written any commentary on the science of autism, how science could be advanced to help autistic people or suggestions how research could be pursued or funded. It seemed he was more interested in making money for himself and helping out his son through autism speaks’ largess than he was in using that money to help others much less fortunate than himself or ways in which science could help mitigate the hardships of autism. If someone can point me to where Robison has contributed to or written anything about the science of autism other than the aforementioned examples, I would be gratified if they would comment on this blog post or send me an email.

Perhaps most germane of all is the question of whether the person who wants to influence the direction of research is a legitimate stakeholder of any sort. Is he a person who himself is afflicted with autism or is he the parent of one? Though Robison has a son who he says is on the spectrum, it would appear his son is minimally affected if at all. On his own autism another statement he makes in the interview particularly stands out:

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.

We seem to have a tacit admission on Robison’s part that he has no disability whatsoever. Claiming he has social challenges that he was able to circumvent a bit seems a stretch for a man able to marry now three times, have a son, start all those successful businesses and write a best selling memoir. If Robison is not disabled by his ASD then why does he merit a diagnosis at all, let alone presenting himself as a stakeholder at government expense as well as the expense to those who donated time and money to autism speaks?

As far as being a good fit for scientific advisory boards it would seem that Robison is the squarest of pegs trying to be placed into the roundest holes by any standards.

I hope that perhaps someday, if I continue to blog, that I can write more frequently on scientific issues in autism as well as a higher quality of posts that I have written in the past. However, my disability, (but not lack of interest), may preclude me from doing so.

Why can’t we have pro-cure autistics who are actually affected by this disability as stakeholders in both governmental funding (given that the government has declared curation and prevention as public policy decisions vis-a-vis the combating autism act) as well as organizations such as autism speaks who claim that their goal is the curation and prevention of autism?
Would I be a better fit on a scientific advisory board than Robison? I don’t know the answer to that question. However, I don’t think I would be any worse and don’t see how I could be.
 
 

13 comments:

Socrates said...

Robison's appointment was nothing but a pr job.

If he doesn't have functional disabilities then he doesn't have autism (if we are going to use the scientific/medical definition of autism).

“Autism as a difference” is the biggest crock sh t ever invented - probably a put-up job by UNUM, to turn-down insurance claims.

Autism Reality NB said...

We seem to have a tacit admission on Robison’s part that he has no disability whatsoever. Claiming he has social challenges that he was able to circumvent a bit seems a stretch for a man able to marry now three times, have a son, start all those successful business and write a best selling memoir. If Robison is not disabled by his ASD then why does he merit a diagnosis at all, let alone presenting himself as a stakeholder at government expense as well as the expense to those who donated time and money to autism speaks?

Good question Jonathan. Also fascinating to read of your challenges.

The Fauxtist said...

Jonathan, I'm surprised that Robinson didn't mention you as Robinson frequently comments on your blog. No, I take that back. I'm not surprised as there is a chasm in autism. There are those that think along the politically correct way (ND) and the others, like you, like me, like Harry and or like Droopy. No, we are locked out. Not to mention those of our "cousins" that can't type or talk or even interview for a fu*cking job at all.

All you, me and others can do is continue to beat the drum of reality, to call out the hypocrisy, to continue to dig our "fingernails" into the "flesh" of the hypocrites. They read your blog we know . They are aware, but at present, have made the anti-autistic choice to ignore those looking in from the outside. That's ok. The casual "autistic" like Robinson and others will fade away. We'll still be here when they are gone.

MJ said...

Well said.

jonathan said...

@fauxtist

Mention me where? In his interview with Silberman? Actually, he was not mentioning anyone, talking about the general case. He used to comment on my blog sometimes and occasionally wrote about me in an essay or blog post or two. However, after I wrote a variety of unfavorable things about him, he stopped commenting here, except on one occasion, and did not write anything about me as far as I know.

The Fauxtist said...

Mention you as an autistic person interested in science to the person interviewing him.

JediKnight2 said...

Every day, I feel like I have an interest in wanting to partake in keeping myself occupied with all sorts of activities and socializing with people, but I feel like I'm "stuck".

When I was a toddler, all I did was wonder around the house, follow my mother around while she'd vacuum the carpets, and get absorbed into the same daily routines as if I was a changeling.

As I grew up, I've suffered a lot as a result of my lack of developmental milestones. All of my grade school years was spent being a perfectionist so I could move on from one grade level to the next, and if it wasn't for IEP's and the disabilities office at college, I wouldn't have a high school diploma and bachelor's degree. Worst of all, not only do I have a hard time applying myself, I don't feel I have the executive functioning and maturity level to get married and have kids. Having a girlfriend would be too much on my plate.

JediKnight2 said...

Out of everything I've learned about what it takes to have relationships with people from my last speech therapist, I don't think I'm high functioning enough to have a real social life.

JediKnight2 said...

I'm pretty much an intelligent person who happens to be incompetent with no real skills and talent except for being able to long snap a football. Hopefully I'll develop into a complete football player. Even if I don't ever make it to a higher level of football, at least I'm participating in a sport that's not in the Special Olympics.

the Fauxtist said...

"Even if I don't ever make it to a higher level of football, at least I'm participating in a sport that's not in the Special Olympics."

Yeah, you wouldn't want to be confused with those 'tards would you? Another data point that makes me dislike the online AS crowd.

Bullet said...

That's ok Jedi. You feel proud about your game and I'll feel proud for all the contestants in the Special Olympics being able to do figure skating, kayaking, artistic gymnastics, cricket, sailing, tennis and all the other sports they do that also require concentration, timing, precision and talent. I'd be very proud of my children if they got into the Special Olympics as adults.

JediKnight2 said...

Fauxtist and Bullet,

This isn't to say I'm against the Special Olympics. I just don't feel the need to participate in it as I'm far higher functioning than the average athlete who partakes in those events. Most of those athletes are physically handicapped to an extent, but the ones that are poorly coordinated are impaired from a mild-moderate to severe degree.

As a child I was poorly coordinated due to mild hypotonia (low muscle tone) and other factors relating to my pervasive developmental disorder, but since I hit my adolescent years and began weight lifting, I'm decently coordinated, have good reflexes, and I'm very, very strong. I now play semi-pro football (adult amateur football) for the Florida Kings as the long snapper (I joined in Jan., a month before the season started and saw action in 4 of 10 regular season games, starting in one of them as the extra point/field goal snapper, yet I have some ways to go to snap for punts). I'm also going to try out for offensive and defensive line this upcoming season.

Bullet, no matter what sport or level of sport your children play, you should definitely be proud. If they don't ever grow up to care about sports, that's perfectly ok, too. Not many autistics can reach that goal.

The Fauxtist said...

"I just don't feel the need to participate in it as I'm far higher functioning than the average athlete who partakes in those events."

Which makes their accomplishments even more remarkable and difficult than your own.