Tuesday, July 21, 2009

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.


Jake Crosby said...

I find it rather ironic that Mr. Robinson submits to the ND view of not wanting to be cured, because last year he underwent transcranial magnetic stimulation, an experimental treatment for autism, at Harvard University and it seemed to have helped him.

John Robison said...


I have put a link to this post in the comments of my own blog. I’d like to answer a few of the questions you raise here.

You quote page five of Look Me in the Eye. This is the whole passage you refer to:

Asperger’s is not a disease. It’s a way of being. There is no cure, nor is there a need for one. There is, however, a need for knowledge and adaptation on the part of Aspergian kids and their families and friends. I hope readers – especially those who are struggling to grow up or live with Asperger’s– will see that the twists and turns and unconventional life choices I made led to a pretty good life, and will learn from my story.

I do not believe that passage pushes my view that no one like me “needs a cure,” as you say. It’s simply a statement of my reality. Asperger’s is a way of being, not an illness, and as manifested in me, it’s livable.

When I wrote that passage I had very limited experience with others on the spectrum. If I were to write it today, I’d probably qualify it in some way. I recognize that you see it differently.

You say that I offered only a superficial perspective on your own views. I agree – my story was meant to be a short pointed blog post, not a chapter of a book. But I direct people to your blog for more.

You ask if my parents took me to be evaluated at an early age. The answer is, they did. However, pediatricians in rural Georgia were not too interested in what my mother had to say. They said, “He’ll grow out of it.”

Later on, when we moved to Amherst, MA, my parents took me to one psychologist after another and they enrolled me in a special ed group program run by the School of Education at UMass. At no time was autism discussed. It was always laziness, defiance, sopciopathy, etc. I was in various forms of therapy or special ed programming right into high school, until I dropped out.

You also ask if I have received an Asperger diagnosis from a clinician since learning of it from my therapist friend. First of all, a therapist friend is still a therapist, and a diagnosis from him is no less valid because we knew one another at the time. Since then, I have received several diagnoses from doctors at University hospitals. So the short answer to that question is, Yes.

You note that special ed is not a part of Look Me in the Eye. Why did I leave that out? I guess it just didn’t make the grade in my mind when I composed the book. After all, a 90,000 word book can only contain a tiny fraction of the life experience of a person my age.

It’s clear to me that your life experience – as depicted by your writing – is quite different from my own. That’s why I wrote today’s post – to illustrate that diversity.

Best wishes

John Robison said...

To respond to Jake . . .

When I say I don't want to be cures, I mean that Asperger's is an essential part of me, and it has good and bad parts. I would not want the whole thing summarily yanked away with a "cure," if such a thing were possible.

That said, I recognize some real limitations that result from my AS, and if a therapy like TMS can remediate one of them, I'm all for that.

So nothing is black and white, is it?

Heather Babes said...

Jon and John R... and Jake...

The reason he underwent that study might not be because he wants a cure but perhaps a better way of understanding what is and isn't Asperger's. I do not consider myself pro-neurodiversity in that I do desire a cure ultimately.

But I can see someone who does not want a cure that would submit to testing to help understand and thusly accept brain differences. I do not think it's a contradiction necessarily.

Thanks Jon, once again, for an enlightening post on gadfly :)

Anonymous said...

Roger Kulp - I am in my 30s and recently realised that I might have mild Asperger's. I have not sought official diagnosis - I would like to know for myself, but I don't want the label. I have mitochondrial problems, possibly immune too.
I would like to be better at reading social situations, I would like to be good at small talk, I would like my brain to filter sounds properly.
I wouldn't force a cure on anyone, but I would like there to be a cure available to me. If there ever is, then I'll consider going for a formal diagnosis in order to access the cure.
I find it hard to understand why people would choose to remain disabled.


Stephanie said...

I can't get along with "Aspies" because they refuse to take personal responsibility for themselves and get help. They like to complain about how "society" doesn't accept them and expects "society" to accept their disruptive behavior rather than seeking help from qualified professionals and taking responsibility for their behavior. ND only helps "Aspies" revel in their diagnosis since it is only a "difference" that needs no "cure." And yet they can never figure out why they can't hold down a job...it must be because of society, not because of their refusal to get help for their medical disorder.

Ender said...

Steph, that was quite possibly the most bigoted comment I have ever seen on here. I am sure I have had less supports throughout my life then any of you (if you think I don't have asperger's fine, but I at least have ADD, ODD, SID, General Anixity Disorder (GAD doesn't sound right), NVLD, dyslexia/ hyperlexia, and a few others that aren't coming to my mind, I would think with 6 disorders I should get more supports then someone with 1, don't you think :).)

I am now teaching at a job where if someone found out any of that (especcially the last two) I could get sacked at any moment. I have found myself talking to myself more lately and showing many outword signs of stress. Still I leave it to myself to survive or parish.

I could go on and on here, but the point is, not all of us expect the world to change for us. Now would we appreciate it if the world was friendly to us, DUH! Would we appreciate it if the world would actually give us a chance and not be repulsed by us, see above. In many ways we are the perfect employees, but people don't give us a chance.

Now I will admit, that whatever the **** I have, it is milder then most. I have been able, with proper training, to get over many of the problems that used to plague me. Not everyone can do this, but I still have a hard to near impossible time making lasting friendships, an impossible time finding a date, etc. Still would I give who I am away for anything, not on your life. Nothing about us without us, thats all I ask for.

P.S. To paraphrase Foreman, one diagnosis is always the simplist explanation. When six disorders can be explained away with one, its probably a good idea, to see if it fits, don't ya think? SID, ODD, ADD, NVLD, GAD (maybe it does work), and dyslexia, are all comorbid with Asperger's. Heck, most books about Asperger's at least talk about the first 4, maybe 5.

Stephanie said...

I didn't base that "opinion" without interacting with plenty of "Aspies" first.

And I am sure I had less support than you. Good job putting yourself up on a pedestal: "I had less support than any of you and I have six different diagnoses yet I STILL have a job, unlike any of you!"

But than you state that your disorder is milder than most, so why even make the statement: "I've had less support than any of you and have at least six diagnoses" if it is milder than most.

Some people actually need intense medical help for a medical disorder and need to pretty much completely "recover" from their disorder to function, obviously unlike you.

I have more than one diagnosis, I just don't tell the world what they are.

By the way, if you get "sacked" because of a disability you can sue because that is illegal. So I don't know what you are worried about. But, an employer can also force an employee to get treatment for a disorder if a behavior is disruptive.

The world gives "Aspies" plenty of chances, "Aspies" just decide not to take it because no one will "accept" them for who they are rather than taking personal responsibility for their own "difference."

Ender said...

I didn't say that none of you ever had a job. I wasn't even entirely sure. I also said I am sure I didn't have it near as bad as any of you.

As for supports, the only support I ever received was being allowed to type my tests... in college (before that nothing). So I didn't come to that conclusion without adequate basis either. 0 supports in elementry school (other then an psycatrist who I sometimes saw, by choice), no supports in middle school, and less then no supports in high school. Beyond that some teachers actively went against me throughout school, and they tried to stick me into the ED/BD room in elementry school (but still no supports... don't ask me to explain it). So, yea, next to no supports.

Beyond that, I just said I had 6 disorders to show that its most likely I do have asperger's, Jonny tried to claime I didn't before, and he said he would now.

Now moving on, I just think, in the case of any HFA or aspie person, they should be able to choose their own treatment plan. This goes for any age. I hate it when parents think its their right to change their kid. Of course, thats just me.

I am in South Korea, not much with disability rights here. Teaching English, with dyslexia, yea I could easily get fired if they found that out. I don't have any disruptive behaviors when working (the worst I have done is told a kid to shut up once, everyone has done worse here, we are half babysitters so the kids can get annoying).

And once again you are stereotyping, not all of us would rather spend all day posting on blogs then get a job :). Maybe you guys should take advantage of some of the chances that your given, before you start critizing some aspies that don't have them. Most leaders have a job or are just completing college, I mean look at Robison for crying out loud.

Stephanie said...

If you don't have an official diagnosis of AS than *I* can't even argue whether or not you do have it: you don't. I only argue the AS/Autism diagnosis in people who have been given an official diagnosis, usually by a doctor they saw once.

Well, since you seem pretty fine now I guess you didn't need any supports then, did you?

Severely disabled autistic people CAN'T choose their own treatment plan. I think if a kid is severely injuring themselves, incontinent, can't communicate and smears feces he/she needs treatment of any kind.

You are living in South Korea teaching English and yet still claim to have an ASD and that "Aspies" don't have any opportunities?

Before I can take advantage of anything I have to get treatment for my medical disorder. Duh.

Pretty much everyone has the same opportunities. But some people are more disabled than others and need treatment. And some people refuse to get treatment and can't figure out why they can never get anywhere in life.

I know most "leaders" have a job and/or are completing college. But, believe it or not, many people with an ASD cannot do those things AT ALL unless they get intensive treatment. Duh.

Stephanie said...

I refer almost everything I say to "Aspies," not to you Roger.

I thought you knew that already. Sorry.

Stephanie said...

Oh, and I agree that "autism" *is* an excuse in many cases. I see people who aren't really disabled in any way and yet blame everything on autism.

I am NOT referring to people who truly are disabled, just people who are very high-functioning and like to blame society for their problems and never take any personal responsibility, those who never bother to get appropriate treatment.

I thought you were getting treatment, Roger? "Aspies" like to blame society and keep their symptoms; I'm sure you want to get rid of yours.

Anonymous said...

"I am NOT referring to people who truly are disabled, just people who are very high-functioning and like to blame society for their problems and never take any personal responsibility, those who never bother to get appropriate treatment."

That sounds right out of the ND playbook for what is said about Jonathan. Can't hold down a job and blames everything on autism.

Anonymous said...

I believe Jonathan tried for years to have a job; I believe Jonathan tried his best and didn't simply say it was society's fault and give up. He knows it is due to his autism but he didn't blame anything on society. I believe Jonathan doesn't have Asperger's but High Functioning Autism.

Anonymous said...

Hyperlexia and dyslexia are neurological opposites; The ND crowd claims all with ASD are superior visual learners, yet this trait should contradict co-mormid NVLD

Ender said...

Hyperlexia and dyslexia going together is interesting, to be sure. I suppose I should state how each effects me. First dyslexia, well simply put no phonics skills whatsoever (test on the 4th grade level, my Freshman year of college). Every word I read I memorize. This makes it very hard for me to spell anything as well as learn to speak/read a foreign language (brand new phonics skills to learn).

Now onto hyperlexia, admittedly this is self-diagnosed, but please do allow me to continue. I was able to read at about the age of 3 or 4. I read everything in sight (most of the time quite a few times) all throughout my childhood, and even on to today. I have always been obsessed with numbers (I have heard this is inter-related). I was always able to read at several (generally 3-5)years above my grade level, and I could go on and on.

Beyond that NVLD is almost always comorbid with asperger's, I am not sure how they contridict with each other. You are aware the v stands for verbal right. Nonverbal, sounds a lot like aspies to me, and the traits are almost always similiar.

Anonymous said...

Blaming everyone else for all one's problems is not restricted to "Aspies" - when I have seen such posts on WP, I have wondered what age the poster is, because this attitude is present among the young in general in the UK. There's a lot of blaming everything on racism or sexism etc, but it's not always true, sometimes it's just an excuse.

I do see that the perfectionist and justice-loving tendencies of the Aspie might make inequality tougher to bear.

Roger Kulp - AFAIK it's not a true mitochondrial disease which would be more severe, but the function is somehow disrupted.


Anonymous said...

John R,

You ask: Why can't we all get along?

That's easy to answer. Because when people are struggling to get through life with a severe disability, they can't understand, and neither can their caregivers, how anyone can crow about the advantages of having it. For them, there are no "good parts", because unlike your mild Aspergian autism which you say is "livable", theirs isn't.

There is nothing advantageous about not being able to communicate, interact, and socialize with fellow human beings. That is what autism is.

You and other Aspies, mostly self-diagnosed, with high IQs, special talents, college degrees and jobs who are capable of writing books and blogging about autism represent the very tip of a huge autism iceberg, the only part that ND wants the public to be shown. The message portrayed is that autism isn't so bad. After all, no one could look at Einstein, Glenn Gould, Stephen Spielberg, Vernon Smith or Tyler Cowan and say, "These people need(ed) a cure", or read your book and say, "John Elder Robison sure needs to be cured".

The reality is that beneath the tip of the autism iceberg, and underneath this portrayal of autism as eccentricity, difference, and giftedness lies the hidden 94% of people with an ASD who are either unemployed because they are unemployable, or only work part-time. ND does not want the public to see autism as the Raymond Babbitts, Linda Freemans, or Charlie Mollisons of this world or hear about them.

Not only are you among the 12% of people with Asperger's Syndrome who have full-time employment, and who are able to pass for normal, you are among the select few who are able to make real friends (which I seem to recall from your book you have been able to do since you were around 6), you are able to have relationships with the opposite sex, find yourself a lifetime partner, and raise a child of your own. So I am not at all surprised to hear you say that you find your life livable, and that you are not seeking a cure. It is the other 9/10ths of the iceberg that is sunk beneath the guise of ND ideology that wrecks lives.


What is a mystery to me is how in good conscience psychologists can diagnose adults with "Autistic Disorder", "Asperger's Syndrome", or "Mild Aspergers" who are living normal lives when DSM Criteria C clearly states, "The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning". Quite obviously I don't understand the meaning of the words "clinically significant".

I think that psychologists should come up with another Diagnostic and Statistical Manual, not of "Mental Disorders", but "States of Being" where eccentric geniuses, academics, creative types, and anyone who "feels different", or has an Aspie personality type can be diagnosed as Aspergian Mutants.

I was going to link to Edan's site here but I see, just like Klein's site, Aspergia has disappeared. Perhaps they both feel that their mission has been accomplished, and it's time for them to forget about autism and get back to their lives. Here's a section from Aspergia on this forum:


~ Watson

Anonymous said...

Like ASD, individuals with NLD have difficulty with non-verbal aspects of communication such as eye contact, reading facial expressions etc., as well as sensory issues; BUT those with NLD also have problems with visual-spatial organization, this affects math, and visual memory, contradicting the idea that all ASD individuals are superior visual learners with photographic memory, as the ND crowd touts

Jake Crosby said...

"I refer almost everything I say to "Aspies," not to you Roger."

As if that's any better, throwing us under the bus because of what some internet-squatting NDs say.

Anonymous said...

Hey Mr. Robinson,

It's great to hear from you! :)
I came across your book at a Barnes and Nobles recently, and I thought it was quite interesting.

Anyway, my name is Adam and I suffer from expressive-receptive language, concentration and processing problems due to my autism (I don't have AS). I see a speech-language pathologist to learn coping strategies and minimize my symptoms for my autism and other disabilities like pragmatics, executive functioning skills, and social and communication skills so I can live a much easier life and be more confident. I may even consider neurofeedback training like Jonathan mentioned in his lastest post, yet my pathologist would rather have me stick with her for now because her therapy would contradict with the neurofeedback, causing both treatments to give me harm. Therefore, I'll likely wait a while after I stop seeing the speech therapist. I have strong ambitions to overcome and fight through my autism even further than when I was a child enrolled in speech and occupational therapy by my parents.

Anyway, congratulations for your successful book and for everything you've been able to accomplish! :)
I sure hope we can meet up at a conference one day.

Take care,
Adam (AKA- JediKnight2)

Anonymous said...

Do you consider yourself an "Aspie" Jake or a person with Asperger's? "Aspie" is has become an insult to me: it means a ND person who was probably self-diagnosed and not disabled in any way.

Anonymous said...


That's exactly what the word means to me.

"Aspie" was invented by Dr Liane Holliday Willey (Ed.D), author of 'Pretending to be Normal: Living with Asperger's Syndrome'. She was self-diagnosed when she wrote the book.

~ Watson