Sunday, May 25, 2014

point by point rebuttal to John Robison's IMFAR speech

In the better late than never department, I've decided to give a point by point rebuttal to a speech given at IMFAR by one of neurodiversity's most prominent proponents, John Elder Robison.

Again, Robison uses the 1 in 68 figure for autism prevalence so frequently misrepresented by autism advocates and media pundits.  He claims to have served on the NIH and CDC committees that discussed the formulation of research at how those numbers were arrived at, yet is woefully ignorant of what those numbers actually mean (assuming he's not outright dishonest).  He writes that this means there are more persons with autism than Jews, Japanese Americans and that these numbers show that there are more autistic people than anyone every realized.  As I've mentioned in a previous post.  The 1 in 68 number was based on just one survey the CDC did in various select parts of the United States.  There was a huge range of numbers in various parts of the United States with Alabama being by far the lowest and New Jersey and Utah being much higher.  The number only applied to persons born in the year 2002.  Anyone who reads the CDC report itself will see the 1 in 68 kids were not formally assessed.  If there was something in a school record suggesting the child had autism they were counted in the survey without a diagnosis.

Robison makes the apples and hurricanes comparison between who should advocate for Jewish people or native Americans with who should advocate for autistics, stating autistics themselves.  Yet autism is a disease/disability of childhood and though there are autistic adults many autistic people are still children so in the meantime their parents advocate for them.  To date, five individuals purported to be on the spectrum have served on the IACC.  All of them have opposed curing autism.  Not one person on the spectrum who is in favor of a cure or finding treatments to alleviate autism has been appointed, in spite of the fact that Roger Kulp has expressed an interest in the position.  At one time, Robison claimed to be in favor of research to "remediate" the debilitating aspects of autism (whatever that means).  Since he's left the science advisory board of autism speaks, his views have become far more radically neurodiverse (I don't know if this is coincidence or not) and he now states that the disabling aspects of autism are largely a construct of society and if the correct accommodations were made autism would not be a disability.  He claims that 1 in 68 persons had autism in the 19th century and before, but somehow they escaped detection as society was so different, yet fails to explain, how someone who could not speak, threw a temper tantrum and was totally impaired from self-stimulation would have been able to hold a job as a blacksmith for example. 

Let me make an analogy to counter Robison's.  As far as I know, we don't have a public citizen member board of the federal government for cancer, diabetes, schizophrenia or any other disease you could name.  We certainly don't have someone who did not complete the tenth grade in school serve on any of those boards.  Steven Jobs was a highly talented individual who contributed great innovations to society.  He was afflicted with pancreatic cancer yet did not serve on any scientific advisory boards to find treatments for cancer.  People with infections don't serve on boards to treat antibiotics.  If Robison can name me any Ph.D. scientist on the spectrum who is capable of doing research to help autism, then maybe i'll buy at least part of his argument and I would support that person in their endeavors if it would help find a cure.

Robison states that people saying they want a cure for autism is a slap in the face for everyone who celebrates the gifts autism gives us, but fails to mention any.  I feel Robison's speech and his anti-cure rhetoric are a slap in the face to me and any other individual who wishes their autism or loved one's autism could be cured including me. 

He states that everyone who has autism suffers.  Well, John, I have news for you.  Every human being, autistic and non-autistic, handicapped and non-handicapped has suffered.  It would be an anomolous human being who has not suffered.  He cites some of the health problems that autistics have including suicide or depression and claims he's at risk for them every day.  For him to imply he has any of the problems a typical person with autism has is ludicrous.  It is highly unlikely someone of his functioning level would be at risk for the same types of health problems others on the spectrum are.  That is assuming Robison is on the spectrum at all. I'm still trying to understand how someone who has stated they have no disability at all merits a diagnosis. 

Robison admits that he has never experienced what it is like for a person not to be able to speak.  Well, I experienced it, though I don't specifically remember what it is like.  I did not recover my speech until close to age five, but I was still nonverbal. 

Robison defends individuals on the spectrum who claim the word cure equates with getting rid of autistic people and says we should not take that attitude because they would be offended by it.  Well, I'm offended by Robison's attitude and their attitude.  If someone is so irrational they actually believe that curing a neurologic condition means getting rid of people that is their problem and I hope no scientist will take what Robison says on that matter seriously. 

It is indeed unfortunate that IMFAR, an organization that should be devoted to research on how to mitigate and ultimately cure autism would give this individual a platform on which to speak.


Anonymous said...

I don't know about the 1-68 numbers. But I suspect however autism, along with various other types of ailments such as cancers,diabetes, hypertension(high blood pressure),obesity & various other ills have been skyrocketing since the 1980s,both in absolute numbers & percentage of population, THX to various stuff they put into factory farmed animals,such as antibiotics, hormone injections,etc. Also not to forget putting various stuff such as fluoride into our water supply. & last, but definitely not least, the pollution from coal plants in the american Southeast & China that goes all the way to the Northeast(NJ,NY,New England) in the former case, & all the way to the West coast in the latter case. 1 must wonder whether all the stuff that coal contains must be affecting human health in some way. I suspect Uncle Sam knows a whole lot more than it lets the public on, concerning how disabilities & diseases get to happen. As for ELR's assertion of the 1 in 68 people with people being on the spectrum, he just mine's as well be playing with numbers to justify the neurodiversity movement. The people you include, the more appealing the ideology becomes. personally though, I think Mr. JER is just plain old erractric, or maybe with extremely small amount of asperger level of autism, @ worst. Just another member of
Harold L Doherty's 'royal' we

Roger Kulp said...

Hi Johnathan,

I'm still giddy that I have finally gotten a real diagnosis in the last week,a very new and rare type of mitochondrial disease unique to autism.My six years of working full time since my last major regression finally paid off.That's pretty much all I can think about right now.

If neurodiversity types like Robinson had their way,the research that got me this diagnosis would never have been done in the first place.Apples and hurricanes is just as good a comparison for they type of autism I have lived with,and the type of autism Robinson has.That the two conditions should be considered the same thing is utter madness.

It really is a joke that that Robinson or Ari Ne'eman should claim to speak for all autistics,rather than just the high functioning or Aspergers end of the spectrum.It only shows their complete ignorance of what autism is.

With mito,you have all of the worst medical,neurological,and behavioral disabilities of the worst of autism,except there is no intellectual disability.One reason why they call it atypical autism.You might want to look at this list.I have everything here.It's a very good description.

Maybe I could work with one of the mito foundations that works so much wit autism,like MitoAction.

Lenny Schafer said...

Robison speaks for the sociopathic sub-cult of Asperger Syndrome victims, imo. His apology to the world for the Adam Lanzas and Elliot Rodgers amongst us is that they are just innocent maladaptive victims of social oppression by the normal majority. Casting aspie victims as a cultural minority group is a cruel joke to those minorities amongst us that truly suffer injustice and discrimination. The neurodiverse aspie cult represent a dangerous continuum of misanthropy and sociopathy. They slip through the cracks of mental health and gun control laws. Coming soon to a mall or a theatre near you.

Shanti said...

Very well said. These are my favorite quotes. "I feel Robison's speech and his anti-cure rhetoric are a slap in the face to me and any other individual who wishes their autism or loved one's autism could be cured including me."
"I'm still trying to understand how someone who has stated they have no disability at all merits a diagnosis." I find so many people with autism and their parents get indignant when you say they have a disability. Just this week a mom on the internet was saying she had to educate her son's teachers during an IEP meeting and inform them that he is not "disabled." Well why the hell does he need an IEP meeting if he has no disability? By definition, IEPs are for children with learning disabilities! There are no IEPs for those that are simply unique!

jonathan said...

Though I don't like the neurodiversity movement, I don't think it's fair to lump them in with Adam Lanza and Elliot Rodgers. I'm not sure Rodgers was on the autism spectrum, though it seems likely Lanza was. I don't believe very many persons with autism (including those in the ND movement) are going to go out and murder people.

Casting aspie victims as a cultural minority group is a cruel joke to those minorities amongst us that truly suffer injustice and discrimination.

I do agree wholeheartedly with this above statement though. Robison's comparison of people on the spectrum to minority groups, such as Jews and blacks, who have been victims of discrimination in the past is very insulting and trivializes the horrible disability that autism indeed is.

Roger Kulp said...

I think everybody needs to know about this study that was done at Harvard last year.It is the best attempt so far to "take autism apart".

Look at Subgroup 3.This is where those like Adam Lanza would fit in.

Subgroup 2 would include mitochondrial disease,CFD,PANDAS etc.

Subgroup 1 would be someone like Conor Doherty.

These are not the same conditions,even though they are under the broad umbrella of autism.

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