Monday, May 19, 2014

John Elder Robison's take on 1 in 68

I see that one of my favorite autism authors John Elder Robison is at it again with his latest foray into insights on autism, giving his take on the 1 in 68 number. Robison writes that this means that autistic people are now more numerous than native americans, Jews, and Japanese immigrants and makes a comparison between the struggles of those groups and people with autism.

This statement might be factually correct if the 1 in 68 number applied to all people living today or let's say people born between 1933, the year when first people diagnosed with autism were born, and 2010,when a child's autistic symptoms might manifest themselves at the age of approximately 36 months

Robison conveniently omits the fact the 1 in 68 figure comes from a prevalence study done by the CDC applying to one birth cohort, people born in the year 2002.  The figures from previous birth years are less.   Also the 1 in 68 figure is an average of a variety of different sites where data was taken from various parts of the country.  There are huge differences in prevalence in Utah and New Jersey as compared to Alabama for instance. 

In fairness to JER though, I will concede he is not the only individual who makes this statement.  The number is repeatedly misrepresented in the popular media and among autism advocates.  He's not the only one who flippantly quotes this figure to play fast and fancy with the facts.  However, I feel Robison is in a different class as he is one of the few select representatives on the IACC who advises the federal government on autism policy.  He has also been appointed to review grants for the NIMH.  I could also give his, at one time, being on the scientific advisory board of Autism Speaks, but fortunately he's already tendered his resignation from that position.

He goes on to state that Studies (emphasis on plural added) show that the same numbers are present in adult populations of those on the spectrum.  As is par for the course from him, he neglects to cite any specific examples.  As far as I know, the only study on adults coming close to that is Terry Bruga's study in the UK which suggested a 1 in 100 prevalence number.  The study had a questionable methodology and was based on only about 19 people who allegedly had a formerly diagnosed spectrum disorder.  Robison uses the plural Studies, not study, so I presume there is at least one other study that he's aware of and I'm not, but fails to mention in the piece.  I'm very curious as to what other study, if any, showed a 1 in 100 prevalence in adults if any.  Since Bruga's study only applied to the UK and not to the USA, there is still not a single study that I know of showing adult prevalence in this country where the 1 in 68 figure for children born in 2002 comes from so, the comparison of the British and American figures may be apples and oranges.

Robison also goes on to write:

 We used to think most autistic people were intellectually disabled.  That narrow view was based on a limited understanding of what autism really is.  As our knowledge grows we recognize more people whose intelligence is in the normal range, and some whose IQ is exceptional.  The more autistics we identify, the closer our community’s distribution of intelligence comes to that of the general population.

This statement is not technically completely false, but leads one to believe that the majority of autistics diagnosed nowadays are of average or higher intelligence as measured by IQ tests.   Lets look at the CDC data compiled on six different birth cohorts in the last fourteen years.  In the 1 in 68 study that Robison cites, 31% of the children had IQ's below 70.  In the six birth cohorts in the CDC's ADDM data, in previous years the percentage of children with IQ lower than 70 were 43, 44.6, 44, 41, 38, and 31%.  So severe intellectual disability in autistics was relatively stable up until the 2002 birth cohort when it significantly dropped but not by a really huge amount. 

The first birth cohort for which figures are available for IQs above 85 there is a range of  40-62% in the first birth cohort, 33-59% in the second, 38-63% in the third 29-51% in the fourth,  38% in the fifth.  In the latest birth cohort, there was a significant jump to 46%, but still not a huge increase.  These numbers merely represent an average of the large range between the various sites in the ADDM studies and not a uniform number for all sites.  This does not include percentages of autistics with IQs in the 70-84 range.  I'm not sure what the figures are of people in the 85-99 range which would still be lower than average intelligence since the median IQ of the general population is 100, which means that 50% of all people have an IQ >100.  So, though the autistic's intelligence has come somewhat closer to that of the general NT population the increase was not much greater than negligible.

After this point, Robison's piece becomes much more interesting.  He compares autistic people with minorities.

Robison again uses the "royal we" that Harold Doherty has frequently written about:

As we form a community identity we are beginning to take control of our destiny.  Some of us are assertive; others are angry.  Some are meek but that’s changing.  We’re speaking out.  We’re getting a better handle on the broad range of supports and services we need to live in this society.  We’re finally recognizing the needs of adults and older autistics.  More and more, we’re speaking up and expressing our needs in education, medicine, workplace accommodation, and public policy.

 Robison neglects to explain what reasonable accommodations autistics could receive in the workplace under ADA that would help.

Starting with the next sentence, the article becomes much better as Robison takes a page out of Ari Ne'eman's book if not outright plagarizing him:

 we’re realizing that a lot of our presumed disability is a construct of modern society.

Apparently Robison is becoming even more extreme in his neurodiverse philosophy.  At one time, he apparently believed in doing research to "remediate the disabling aspects of autism" though he was opposed to a cure.  Now he's claiming to a great degree that autism is not really a disability in itself, but to a large degree only society makes it so.  Does this mean that the remedies he's proposing are similar to ASAN's?

The answer is yes.  Robison, in the most interesting part of the article yet, goes on to state that the reason autistics weren't identified previously was that 100 years ago or so, society was completely different.  Autistics got along just fine in society and blended in and worked just the same way neurotypical people did.  Robison, steals more of Ari Ne'eman's and ASAN's thunder by claiming that if society could only change, our educational system and apprenticing people for work they way they did in less modern times autistics could get along just fine and work and marry just like everyone else and now it is up to society to change and not autistics themselves.

Aside from the fact, this argument does not give an explanation of the 4/10,000 number that existed for the 1980s there are other things about this argument that make little sense (but perhaps make dollars for Robison on his speaking engagements and book sales).

Robison's arguments might be logical if he were discussing dyslexics who lived in a hunting and gathering society hundreds of years ago or in the present day in the African congo or aboriginal Australia.  They probably would not need to know how to read to survive in such a society, but would have been less successful in a 20th century society where reading is mandatory.  However, how logical is this argument for autism? 

I don't know if the prevalence of autism in the nineteenth century and earlier was the same as it is now.  I do know that society would have been the same socially.  That outbursts and behavioral issues would not have been more leniently tolerated.  That autistics would still have had the same problems learning to do things as non-handicapped people.  I wonder how people who were completely nonverbal could have managed prior to the twentieth century.  They would have clearly been impaired. They would not have fit in any better.  They would not have been able to be blacksmiths or hunters or gatherers.

Social unpleasantry would have been just as much a problem in those days as in the present time.  Employers would have fired autistic people because they did not like their behavior just the same.

Robison has been quite vague as to how autistic people could be accommodated under ADA (which bars unreasonable accommodations, including putting up with social unpleasantry).  The motor problems and meltdowns would have been just as bad if someone were trying to be a whip and buggy manufacturer in the days prior to automobiles.

He goes on to say the rest of the 98% need us because someone with autism invented calculus, apparently implying that Isaac Newton and anyone else who may have invented calculus was autistic.   He also states the person who invented pokemon was autistic, but I find that hard to believe also. 

Since he's resigned from the science board of autism speaks, Robison's views seem to have shifted radically to someone far more neurodiverse.  At one time, he acknowledged that autism was a disability that needed remediating through scientific research.  Now he's stated that disability is largely a social construct that can be remedied by societal accommodations.  I wonder if he always felt this way and now that being on the board of autism speaks did not work out for him that he no longer has to make politically correct statements to appease a certain subset of persons interested in autism.  Of course, I don't know the answer to that.   

Once again, I thank John Robison for writing such an interesting article.  At the end of the piece he states:  A new day is dawning for our community 

Yes, it already has, neurodiversity has taken over and has complete credibility and pro-cure people, particularly pro-cure autistics are scoffed and ridiculed.  





9 comments:

H L Doherty said...

Interesting article Jonathan. Whenever I read one of JER's discourses about autism I always wonder when he is going to describe how he meets the mandatory functional limitation requirement of the DSM-5 ASD:

"B. The deficits result in functional limitations in effective communication, social participation, social relationships, academic achievement, or occupational performance, individually or in combination."

I realize that JER was a diagnosed free ranging Aspergian from the DSM-IV and will not lose his Dx for not meeting DSM-5 criteria but how can he talk about people with functional limitations that he does not appear to have as a family man, a successful businessman and a participant in high profile government and charitable organizations and meetings conducted by the IACC and Autism Speaks? How does he even have a right to call himself autistic?

jonathan said...

Yes, Harold, I agree. I don't understand how he merits a diagnosis of autism when he's stated he has no disability of any sort. He says a psychologist friend diagnosed him as autistic. I read his "look me in the eye" quite some time ago and I don't remember if he explained it or not. In a tweet to him on twitter I asked him, and he claimed that he had fulfilled the ADOS criteria from somewhere which I am rather skeptical about. Maybe there is some explanation as to how he can merit an autism diagnosis, but I don't understand what it is.

......I'm Anonymous said...

Spending a single day with Harold's son or my son would be life changing for JER. I'm sure he'd see just how silly his "We" is.

Roger Kulp said...

I really take issue with what Robinson and the rest of neurodiversity says about autism always being around.This is just a variant on the "Einstein was autistic" claptrap.

I think my own family is a pretty good yardstick.My aunt was born in 1930,and had very obvious Asperger's or HFA.She also had a lot of folate/methylation related medical issues no one could identify.There was no one in her family like her going back generations.She was about the same age as the first children Kanner studied.

I don't think autism goes back much further than this.Autism probably began around the start of the 20th Century,was slowly increasing,and then exploded in the early 1990s.I have come to see than a previously unknown autoimmune syndrome triggered by too many vaccines might well be a real possibility.

Anne Dachel has a point,older autistics like myself with lifelong medical issues are few and far between.There really must be a reason why.I never "blended in".I never was able to have a job,or go to college.I lived with my mother until she died.I was often picked up for wandering and had serious meltdowns into my late 40s when a neurometabolic cause was found for me.Had it not,I would be in a residential treatment center right now.

Robinson pretends lower functioning autistics do not exist.

There are a lot of conflicting studies out there about how many autistics do or do not have intellectual disability.

jonathan said...

Robinson pretends lower functioning autistics do not exist.
I absolutely agree with you there, Roger.

There are a lot of conflicting studies out there about how many autistics do or do not have intellectual disability.

I don't believe the other studies are really relevant to the post or topic. Robison was referring to the 1 in 68 figure cited by the CDC's study of the 2002 birth cohort, trying to apply it to every autistic person born in every year without citing any specific statistics. I partially filled in the gap for him by citing what was actually said in that particularly survey of persons born in 2002 with the percentage of persons with intellectual disabilities.

Anonymous said...

The autistic elite, as such as they are, do whatever they can to inflate the numbers to as high as they can. & remember as well, that 1 in 68 number is actually based on the DSM-4, replaced last year by the DSM 5,which narrows the criteria on who can be considered autistic. But don't worry, i'm sure the ND movement will try to find ways to somehow increase the number of 'autistics' out there. I sometimes suspect whether the 'autistic rights' leaders are really a self-serving group, sometimes using those of non-verbal low functioning retarded, but happy autistics https://www.youtube.com/watch?v=I1UvGL3O8pI as propaganda to justify their ideology, like this guy in the above video purporting to speak for low functioning autistics,but just as self-identified 'aspies' get mad @ the folks of Autism Speaks or other 'cure' groups claiming to speak for them. Double standards abound. But to what I've seen in regards to the likes of ASAN offering any kind of help to autistic people, it more often than not serves those on the highest, most intelligent of the spectrum, while neglecting the needs of the vast majority of those on the spectrum whom aren't so intelligent & gifted as Ari ne'eman, JER, Alex Plank & company, including myself. How could & would they be willing to help people like me,Jon,Roger & so many others out there? What could they offer, be willing to offer? But 1 thing's for sure. Human nature never changes, even if it can be nasty, cruel & in your face. No amount of social engineering can ever change that.

Anonymous said...

"Robison's arguments might be logical if he were discussing dyslexics who lived in a hunting and gathering society hundreds of years ago or in the present day in the African congo or aboriginal Australia. They probably would not need to know how to read to survive in such a society, but would have been less successful in a 20th century society where reading is mandatory. However, how logical is this argument for autism?"

In some cases, it's logical.

Take a look at the anti-black bigotry from an autistic commenter at http://autistscorner.blogspot.com/2013/03/autistic-people-are-human.html?showComment=1375916818609#c987856269242485479

Back in the 1900s U.S. it was easier for someone with that attitude to get away with acting on it.

Now in the 2010s U.S. it's harder for someone with that attitude to get away with acting on it.

Sure the rest of us *can* accommodate that by treating them as superior and the rest of us as inferior, but *should* we? Of course we shouldn't!

Anonymous said...

"I do know that society would have been the same socially. That outbursts and behavioral issues would not have been more leniently tolerated."

Outbursts and behavioral issues were in fact more leniently tolerated in the cases where they were violent people beating their wives, sons, daughters, servants, etc.

Yuval said...

I just saw this. This is really funny how he thinks that Autistics prospered back before modern industrial advancements, even though most autistics depend on those advancements. He then says that Autistics created those advancements, contradicting himself.

I'm surprised that he has any legitimacy in discussing Autism.