john elder robison gives his take on gadfly's views

I am somewhat gratified to see that a best selling author, John Elder Robison, who wrote a memoir about his Asperger's syndrome, Look Me in the Eye, has taken an interest in my blog. He has taken an interest in the fact that I long for a cure for autism (admittedly something not likely to happen in my lifetime). Perhaps having a writer of a best selling memoir taking an interest in your blog means you are making an impact, maybe not.

He discusses why I would not regard my autism as any sort of gift and would long for a cure as opposed to his view that though having an ASD has caused him some problems in his life, he does not wish for a cure but to be accepted as he is. He also feels his AS has given him some great gifts. He states that he has been a subject in research studies showing that he has similar neurologic abnormalities to people with much more severe autism, but admits he does not have the problems they have and concedes that is one reason why two people on the spectrum could have such differing viewpoints. In light of these facts, he states that he finds my desire for a cure reasonable, but hopes that I can agree that his desire to live as he is and seek acceptance rather than a cure is reasonable.

Yes, I can agree John's take is reasonable for him. I have no desire to force a cure on him if he does not desire one. I see nothing wrong with him seeking acceptance. The problem is this contradicts what he said in his book, where in fact he goes much further than this. On page 5 of his book he states:
Asperger's is not a disease there is no cure and there is no need for one

I also wonder since he does not seem to regard his AS as any sort of pathology why would he be a subject in a transmagnetic cranial stimulation experiment. After all, it seems that part of his motivation in being a research subject was there were some facets of his AS that he found disabling and he wanted to participate in the research that Dr. Lindsay Oberman and others are doing along these lines to help correct these deficits.

Though I don't have Asperger's per se, I have a high functioning autism condition that is similar to it. Though, unlike person's with Asperger's I had a speech delay, I am physically clumsy and have a poor score on the performance part of the WAIS IQ test and a relatively high verbal score. So basically, he in the book is pushing his view on others that not only does he not need a cure but no one else with Asperger's or a disorder like it does either. So basically John is saying I should not tell him how to live his life, but others who have Asperger's who may be so gravely disabled by the condition (unlike John) that they can't work or find a mate are not diseased and should not be cured if there were an opportunity for a cure.

However, John goes on to admit that not all persons with autism spectrum disorders (myself included naturally) will do as well as he does and others. He states that he wishes this issue were not as divisive and polarizing as it is and hopes that people can all get along. I do give him credit and applaud him for saying this. I do agree with this.

I do feel that John did a rather superficial perspective on why perhaps I (or someone else whose autism has impacted their lives more than John's has) might have a different view than he does. He is married and has a kid. I have never been married and will likely never be married. He was able to make a good living in various businesses. I have only been able to barely eek out a living sporadically during an approximately 28 year period of my life and had to retire relatively young. John and I are about the same age 51 and 53 respectively. Yet he apparently did not decide that he had Asperger's until he was about 40, where apparently he had a friend who was a psychologist discussed it with him. Though I was not diagnosed with autism until my teens, my mother did ask the person who was my therapist in the 1960s if she thought I was autistic and she said no; so even in those days the possibility was explored. Of course, in 1958, when my parents first noticed something was very wrong with me, I was taken to a pediatric neurologist, who did not know what I had as very few persons had heard of autism in those days. I wonder if John's parents took him to be evaluated for something when he was 3 years old or even 8.

I also was a veteran of special education schools for 8 years. I am rather vague on exactly what John's experiences were in special ed. I first got John's attention when I wrote a post stating my distaste for the fact that he and fellow anti-cure autist Stephen Shore were allowed to review research grants for autism funded with public taxpayer money when the official policy of the U.S.A. based on the Combating Autism Act was that research would be funded for the specific intent of curing and preventing autism. I questioned what qualifications he and Steve had for reviewing the research. I received some polite responses from him, both in the comments section of my blog and in one pleasant private email exchange he and I had.

He stated that he had also had some experiences in some special ed after school programs in his youth. I will admit that I have not read John's book in its entirety, only parts of it. I sort of feel that I have no use for books where the person who is married and has kids and has a good job and then decides he is autistic well into adulthood. Another example of this is Michael John Carley who not only rejects a cure for himself but states that most autistics don't want a cure in his book Asperger's from the Inside Out. They have not likely shared my life's experiences, so they can't possibly know how rough I have had it due to my disability. So, I don't know what if anything John said in his book about his after school special ed experiences. One reader of gadfly emailed me privately that he had read John's book and he could not recall John ever mentioning anything about his special ed experiences in Look Me in The Eye and felt he would have mentioned this in the book if he in fact had any special ed experiences. I agreed with this. Of course, not having read the entire book, I don't think I can fairly comment on this any further.

Also, it is unclear whether or not John was ever officially diagnosed with AS by a clinician before his book was published. My memory of the parts I did read was that he was diagnosed by the psychologist friend of his when he was about 40. However on his website he quotes what some reviewers say about his book. One interesting quote comes up from a library journal review of his book:

First-time writer Robison diagnosed himself with Asperger's syndrome after receiving Tony Attwood’s groundbreaking work on the subject from a therapist friend ten years ago.....

So it is unclear to this blog writer whether or not Robison has a legitimate diagnosis of AS from a clinician. I certainly have been diagnosed as autistic by at least a few different clinicians. It is the basis for my being on my parent's medical plan as a disabled dependent and the basis for my persual of eligibility for social security disability insurance, which my lawyer is currently handling on a contingency basis.

So, in sum my life experiences have been far different, I believe than that of persons like John and Michael Carley. This condition has indeed made my life difficult and this does form my opinion for a need for cure. Again, I will say, I am not trying to impose my view on adults like John who are of the age of consent.

I am glad that John has called for civilized discourse in the cure debate. I am also very glad that he has been very polite to me in all of our exchanges over the internet so far and that what I had to write influenced a best selling author enough to make me a subject of one of his blog posts on his psychology today blog.

I believe that though John is not a party that it is the neurodiversity, anti-cure people with their sharp rhetoric, constant abuse over the internet of autistics who don't share their viewpoint who have created the polarization of this issue or at least most of it. I hope that at least some of them will read John's post and take what he has to say to heart.