Tuesday, May 27, 2014

More Words of Wisdom on Autistic Unemployment

I was interested in reading yet another article giving easy and simplistic solutions on the problems of unemployment among autistic people entitled How the Hiring Process Marginalizes Candidates on The Autism Spectrum.  The article starts out claiming that half a million persons with autism are educated and hirable.  I'm not sure where this half a million figure comes from and the article does not explain it.

The article starts out misrepresenting the 1 in 68 number, as do so many people who write about autism.  It claims that many of these autistic go on to higher education and are employable, but are unemployed because societal constraints on the hiring process.

The article quotes Marcia Scheiner, president and founder of the organization ASTEP (Asperger Syndrome Training and Employment Program) who discusses how important doing well on an interview is to the hiring process and how persons on the spectrum are at a disadvantage because they don't interview well.  I've written about ASTEPpreviously if the interested reader is curious about this organization.

I question how many persons on the spectrum (regardless of whether they have asperger's or autism) really have qualifications right out of college which would enable them to do a variety of jobs.  Jobs requiring no paid experience are few and far between, particularly in a bad economy.

If a person has the skill set, I believe they can be hired for a lot of different jobs, despite lack of interviewing skills.  I worked sporadically as a medical transcriptionist between 1986 and 2007.  To get my foot in the door I had to do piecework as an independent contractor at less than minimum wage.  Once I garnered some experience, I was able to get other transcription gigs.  No one did extensive interviewing of me for these positions.  They were easily able to administer tests to gauge my ability to do the job by giving me a report to transcribe.  If you can pass tests like these, you have the job, in spite of a poor ability to interview.

When I was trying to get into the computer field, lack of education and experience led me to fail a test in one company I applied for, that did not get me the job.

I know of one individual on the spectrum who has a math degree and has tried to become an insurance actuary but has failed the preliminary exam which can get you hired.  What difference does it make whether he can interview or not?

I know of another individual on the spectrum who stammers when he speaks and probably would not be counted as someone who could do well at job interviews, yet he has had a number of jobs, albeit menial ones.  Apparently lack of interviewing skills did not stop him.

One of the main problems I have with this piece, it only addresses autistics who graduate from college (or possibly a vocational school) and not others who will never do that.  The majority of person on the spectrum probably have disabilities that would prevent them for acquiring a skill set, regardless of any alleged societal constraints.  

What about when someone with autism is hired, presuming they have the skill set?  Do they have an ability to get along with coworkers?  Do they have overly loud voices which would be unpleasant for others and prompt their dismissal from the job?  Would they have executive functioning problems which might preclude good hygiene and result in their being fired?  Neither the author of this piece nor Marcia Scheiner address this issue.

I believe the best possible way for a person on the spectrum, assuming they can achieve the higher education and the skill set, is to become as skilled as possible in a profession by practice and possibly doing an unpaid internship.  This is far more sensible than the ridiculous notion of changing society and getting them to overlook an interview process which probably would not even be relevant in hiring if the person had the skill set.

Again, there are no simplistic or easy answers to this. 

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.

Thursday, May 22, 2014

Barack Obama, you sure do have your nerve

On reading Manuel Casanova's Cortical Chauvinism blog today, I see that Barack Obama has written a letter concerning autism. Here's the letter, addressed to attendees of the International Meeting for Autism Research, in full:  

The White House Washington May 7, 2014 

I send greeting to all those attending the International Meeting for Autism Research (IMFAR). Millions around the world live on the autism spectrum, including 1 out of every 68 American children. Those affected are our family members and friends, colleagues and neighbors. We all can play a roe in supporting those living on the autism spectrum and their loved ones. Occasions like the IMFAR provide a special opportunity to share the latest findings in the science of autism, which have the potential to improve the quality of life for those with autism. By uniting researchers from across the globe, events like this pave the way for breakthroughs in detection, intervention, and education that can help those affected better prepare for their bright future. I thank the scientists and medical professionals advancing our understanding of the autism spectrum. I am deeply grateful to all those who dedicate themselves to promoting the health and well-being of others, and I wish everyone gathered all the best for a productive, rewarding event. 

Barack Obama

All I can say to the POTUS in response to this letter is that he sure does have his nerve writing this.

First off, the 1 out of 68 of every American children is an inaccurate statement.  That number only refers to the year 2002 birth cohort that the CDC's prevalence reports recently published.  Even in this cohort, it is highly unlikely that every one of those kids was autistic.  They did not have to have a formal diagnosis to be counted in this survey.  A variety of records were reviewed, including school records.  If there was anything that suggested the child had autism, they were counted in the survey.  They did not enlist clinicians to confirm the child had autism.

The really nervy thing about this letter is the fact that Mr. Obama has appointed so many members of the neurodiversity movement to various government posts and the funding of their research.  He appointed someone 21 years old who has said a cure for autism would be morally reprehensible.  This individual has never worked a day in his life and he stated that one of the solutions for reducing unemployment in autistics is to eliminate social pleasantry as a criteria for hiring and evaluating a person's job performance.  He appointed a high school dropout to both serve on the IACC as well as review scientific grants for the NIMH.  This person has said that to a large extent the disability of autism is just a social construct.  He also stated that he believes the 4:1 male to female ratio of autistics is the result of parents having sons as their first borns and daughters not having a chance to catch up.  He's also appointed an individual who has compared parents who want a cure for autism to the Ku Klux Klan.
He funds the research of rogue scientist Morton Gernsbacher who has opposed a cure for autism and has stated that rhetoric such as 'suffering from autism' is offensive

Barack Obama, I realize you'll never read this, but I just want to say to anyone who may happen to read this you sure do have a lot of nerve writing this letter.  You don't care that  many persons on the spectrum such as myself and members of their families suffer tremendously from this affliction.

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.