Thursday, December 18, 2014

"Professor" John Elder Robison's Limited Understanding of Autism and Autism Research

MIT Technology Review:  John Elder Robison is a professor at the 
College of William & Mary and the author of Look Me in the Eye.

John Elder Robison is a former "free ranging "Aspie", a successful businessman, writer and now apparently a professor as indicated in the MIT Technology Review article Fixing Autism Research We need to come to grips with what autism really is.  I met Mr Robison briefly at the IMFAR conference in Toronto a couple of years ago. It is not clear in what sense he suffers from a DSM5 ASD clinically significant  functioning impairment (mandatory criterion D) in relation to his "autism" symptoms so as to qualify for an autism spectrum disorder diagnosis but he has embraced the autism label nonetheless and presents himself as a voice for the "autism' community.  John Elder Robison may well be a voice for the extremely high functioning "autism" community but he certainly does not speak for my adult son who suffers, and I use the word "suffers" intentionally, from his severe autism disorder.  Nor do Robison's comments indicate in any meaningful sense that the understands what autism is in a general sense.

My adult son with severe autism disorder like many with autism disorders also have an Intellectual Disability diagnosis and suffers from seizures.  In recent years the CDC has estimated between 41-44% of persons with autism disorder also have an ID.  The WHO estimated that 50% with an ASD also suffer from ID. Many also suffer from epileptic seizures.  The estimates in that regard  vary widely but 30% is a number often cited with an even higher number of that percentage located among the severely autistic end of the spectrum. 

Like many with ASD, ID and epilepsy my son suffers meltdowns, self injurious behavior, reactive aggression, sensory issues and extreme obsessive behaviors.  Changes of any kind can be very challenging. His health is affected in many negative ways by his limited communication abiliity of any kind and no computers do not reveal an inner intelligence which he can communicate via keyboard.

Professor J E Robison complains that autism is not a disease.  I assume he means that autism is not contagious and I am sure the world appreciates that insight.  It is recognized medically as a neurological DISORDER. More recently well informed autism experts like Lynn Waterhouse have acknowledged that autism is very heterogeneous in nature and may better be viewed from a symptom perspective rather than as a uniform disorder.  Many parents of children with severe autism including me have long complained when extremely high functioning persons like JE Robison present themselves as autism experts and present a view of autism to the world based on their considerable abilities and gifts.

"Professor" Robison's life experience as an extremely high functioning free ranging Aspie gives him no  insight into severe autism disorders and the potential benefit down the road, admittedly far down the road,  for persons with severe autism,   It would be nice if the good professor Robison would wake up some day and realize the harm he is doing to people like my son by his misrepresentations of what autism means,  I am not however holding my breath waiting.  


Bill Wren said...

It sounds as if autism has similar difficulties as epilepsy as far as how it is perceived. Recently, the ILAE (International League Against Epilepsy) and IBE (International Bureau for Epilepsy) developed a new definition of epilepsy:

"In the definition, epilepsy is now called a disease, rather than a disorder. This was a decision of the Executive Committees of the ILAE and the International Bureau for Epilepsy. Even though epilepsy is a heterogeneous condition, so is cancer or heart disease, and those are called diseases. The word 'disease' better connotes the seriousness of epilepsy to the public."

As they say above, the word disorder seems to allow us to dismiss the condition as "just this" or "just that" whereas disease seems to carry a sense of severity to the public.

Anonymous said...

I agree 100%. John and his close friend Jessica Wilson of Newton, MA seem to have made it their mission to speak about the wonders of autism. I can only assume it is easy for them to continue to do this when dealing with the brand of autism they seem to be experiencing. John lives a full life and Wilson's daughter Kendall is very high functioning which the mother makes sure to write about multiple times a day as well as giving passive aggressive digs at anyone who disagrees with her ignorant views. It is sad these ego driven individuals have such a loud voice in the autism world. They do not speak for the majority of kids and families, certianly not the ones I know.

It helps that you call these people out Harold and show the rest of the world what autism truly looks like in the majority of cases.

Roger Kulp said...

There are many different types of autism,but one of the least common seems to be autism with mitochondrial disease,like I have.Mitochondrial autism may be the only type of autism,where you can have all of the negative behaviors,like self abuse,wandering and property destruction,a staggering number of medical issues,including seizures,multiple regressions,be profoundly low functioning,but have intact speech and language.That's why they call it atypical autism.

It really is a shame that there are so few people out there with genuine mitochondrial autism,who are able to express what life is like to be severely disabled in both mind and body.I think if there were,there would be a substantial group of people to counter the "positively autistic" picture presented by the media,by the neurodiversity movement,and by Autism Speaks.

I will say this.John Elder Robison was a great help to me a few months ago,when I was applying for the IACC.I am grateful for that.He admitted to me in an email,that I have a very unique voice that needs to be heard.I only hope I am well enough to attend the meetings if I am approved.

John Elder Robison said...

It's funny that you tell me how much harm I do for what you describe as severely autistic people like your son. Yet I have consistently argued for more and better research to improve the quality of life for that population.

I have never challenged your assertion that your son has medical and cognitive challenges, and I have supported work targeting both.

You write on your blog about your struggles getting services for your son. It's a mystery why you disparage me for arguing for supports and tools to provide better quality of life for the autistic population here.

The suggestion that "high functioning people like me" paint a false picture of humanity is no more real than the suggestion that bright neurotypicals paint a false picture of their less intellectually gifted brethren.

We are all individuals, and each of us advocates for autism in our own way. One day you may realize I am not your opponent or your enemy

H L Doherty said...

JE Robison thank you for your comment but I maintain my position that you don't present the harsh aspects of severe autism. You present high functioning autism to the public and that is the harm. In your recent article you criticize cure oriented research. Many parents seek cures for their children, particularly severely autistic children. You have no background experience or knowledge with severe autism disorders but I have not seen you limit your comments to those in the autism community with your extremely high functioning level. Again I thank you for visiting my site and commenting here and wish you a happy holiday season.

jonathan said...

It's sad that John Robison doesn't seem to understand how stating that autism is not a disease trivializes the very harsh problems that connor Doherty and others who suffer from this condition. Though my challenges are not as great as theirs, I still suffer from this condition also. John Robison wants to give simplistic answers for hard problems without knowing anything about them at least that is my take.

John Elder Robison said...

You seem very sure of my lack of experience with "severe autism disorders." Did you know our school serves high school students with intellectual disability, and our main school serves nonverbal students as well as speaking? Did you know I had several nonverbal cousins, half of whom are now dead from disease, misadventure. And the ones still living, still don't talk

H L Doherty said...

JE Robison, thank you for commenting again but your comments do not reflect what you are saying and have maintained for too long in the mainstream media. In the article referenced and linked in my blog comment you state with respect to making autism research "right" that: "we can put autistic people in charge." Obviously you are arguing for putting very high functioning autistic people in charge of research, including you. Severely autistic people like my son and the 41-44% (CDC) to 50% (WHO) of persons on the autism spectrum with ID would not be competent to determine what kind of "autism" research should be done. So the "autistics" in charge would be those like you extremely high functioning who see autism through their own life experiences and bias. I don not agree with your claim and I think it would be a major setback if extremely high functioning autistics were put in charge of research. As for your experience with severe autism I don't accept what you have said as providing you with expertise in relation to those like my son with severe autism disorders. I have lived and care for him 19 years 24/7. He brings us great joy as you can see from the pictures on the sides of this blog but he also presents challenges that tell us how serious his challenges are and I see no awareness of such challenges in your arguments about whether autism is a disease (it is although not a contagious disease), a disorder which it is by definition or the fact that you are offended by the label #MSSNG. As the parent of a severely autistic young man I see nothing of benefit to my son in your efforts. I have also worked as a lawyer with people with Aspergers charged with assault in school and group homes and a young Aspergers man who spent 4 1/2 years in a psychiatric hospital after being sent there on a minor assault charge. When I was retained and examined the evidence of the Health officials who wished to continue his detention in the Psch Hosp. it was clear to me that their evidence did not justify his continued detention and the Review Board agreed. So I am aware that higher functioning autistics can face serious challenges but they are still MUCH different than those facing severely autistic persons with limited communication or understanding of the world who engage in serious self injury, dangerous wandering in waters and traffic and who studies show will have a shortened life expectancy. Thank you again for visiting my site and please enjoy the holiday season.

Anonymous said...

The problem started with the APA. I am interested in what Robison has to say - however, as Doherty points out, Robison is coming from a whole different time/space continuum from that occupied by my son and his peers. That's ok - but the BIG problem lies in public perception - from The NY Times to the ladies in line at the supermarket - that Robison (and Ari Ne'man, et al.) is representative of Autism. Yes, it's now a "spectrum" - but the nonverbal and often socially isolated (and, yes, seizure-prone) end of the spectrum can't carve a place in the public consciousness the way highly educated, verbal, prominent formery-known-as people with Asberger's can.

Roger Kulp said...

Harold,you know I agreee with most of what you say,but I do believe we need to be able to see the difficulties of those all across the spectrum.This is the first time I have seen Professor Robison say he has siblings who are low functioning who are dead from some of problems those who are lower functioning face.By misadventure,I can assume he means things like being killed by cars,trucks,trains and such while wandering.I have had too many close calls in this area before my cerebral folate deficiency was treated.I think JER may have a better understanding than most people in the neurodiversity movement of the scope of severity autism can have.

At the last IACC meeting,Professor Robison stated that people at his end of the spectrum are most prone to suicide.I know all about this too.My sister has high functioning autism,and epilepsy.She does not have any of the medical issues I do,but she does have bipolar disorder,which is common in people with high functioning autism.She has attempted suicide more than once.I know from my life with my sister,that comorbid mental illness can be far more severe than the autism itself.

It really is a shame Conor was an only child.Autism often appears in multiple siblings in the same family.In these families,one sibling is often more severely disabled than the other.Having two or more children at different places on the spectrum can give you a real perspective on autism,you cannot get with only one child.

That said,I also think that public people who are on the spectrum,and very high functioning,have done a very poor job of admitting the difficulties that can exist all across the spectrum,and seem to be to preoccupied with their own niche of the very high functioning.I would argue since they are very public people,and representatives of autism,they ought to talk more about difficulties across the spectrum.I would like to think we could all learn from one another,but maybe the differences are too great.

Anonymous said...

@ Roger- first of all, I don't think Connor is an only child. I think Harold has mentioned that Connor has a brother who is not on the autism spectrum but I may be wrong. Also FYI, I have several children and only one of them is severely autistic with epilepsy. My other children are completely neurotypical with no medical issues whatsoever so I don't agree that that autism is usually seen in different aspects in multiple family members. I think the autism we have seen in the past 15-20 years has a medical basis and is caused by environmental insults.

John Robison, Jessica Wilson and others like them simply need on line head pats on a daily basis and their egos continually fed. It's pathetic really. They do nothing to promote awareness of what autism truly entails for the majority of people.

Dasa Lessard said...

When my daughter was first diagnosed with autistic disorder 5 years ago, I could not understand what it was and it drove me crazy. A neurologist told me it was a communication disorder. The psychologist told me it was a neurological disorder. A speech therapist told me it was a developmental disorder. And an occupational therapist told me it was a sensory processing disorder. Nobody told me it was a psychological disorder yet it is diagnosed by a psychologist based on a psychologic diagnostic manual. Have they figured it out yet? At it stands now, as far as I can tell, autism is still a theory. And a great source of revenue for the psych profession. My daughter is turning 7 soon, is mostly non-verbal, still obsessed with stims, and has a profound intellectual disability, if I were to believe the IQ tests, which I don't. Yet more and more I meet parents whose children have been diagnosed on the "spectrum" but seem very able -- they are diagnosed purely because of "unmanageable behaviour" and nothing else. Autism is becoming the new AdHD -- a pretty meaningless diagnosis.

Roger Kulp said...

Dasa,autism is all this and more.Autism has certainly been cheapened by overdiagnosis at the higher end of the spectrum,this is why we see so many parents with very high functioning children saying autism is no big deal.I was verbal,and had good language,but I was still low functioning enough,and with enough serious behavior problems,to get a diagnosis in 1971.

Dasa Lessard said...

Roger Kulp, you were diagnosed 2 years before I was born. I can imagine how rare this diagnosis was back then and how difficul it was for your parents to process it. Do you feel less isolated now that autism is so prevalent? I find that, as a parent, the fact that a rare disorder has become the "autism spectrum" affecting 1 in 3 kids does not make it any less lonely or isolating for me, because my child is still the odd one out, whether she in a group of typical kids or kids on the autism spectrum. She, and we, don't fit into the "autism community" as it exists now because the majority are high-functioning and verbal.

ian MacGregor said...

I found this abstract interesting:
Journal of Autism and Developmental Disorders
© Springer Science+Business Media New York 2014
Original Paper
Changes in Prevalence of Autism Spectrum Disorders in 2001–2011: Findings from the Stockholm Youth Cohort
Selma Idring1, 2 , Michael Lundberg1, Harald Sturm2, Christina Dalman1, 3, Clara Gumpert4, Dheeraj Rai1, 5, 6, Brian K. Lee7 and Cecilia Magnusson1, 3
(1)Department of Public Health Sciences, Karolinska Institutet, Widerströmska Huset, Tomtebodavägen 18A, 171 77 Stockholm, Sweden
(2)Neurodevelopmental Psychiatry Unit Southeast, Child and Youth Psychiatry, Stockholm County Council, Stockholm, Sweden
(3)Centre for Epidemiology and Community Medicine, Stockholm County Council, Stockholm, Sweden
(4)Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden
(5)Academic Unit of Psychiatry, School of Social and Community Medicine, University of Bristol, Bristol, UK
(6)Avon and Wiltshire Partnership NHS Mental Health Trust, Bristol, UK
(7)Department of Epidemiology and Biostatistics, A.J. Drexel Autism Institute, Drexel University, Philadelphia, PA, USA

Selma Idring
Published online: 5 December 2014
In a record-linkage study in Stockholm, Sweden, the year 2011 prevalence of diagnosed autism spectrum disorders (ASD) was found to be 0.40, 1.74, 2.46, and 1.76 % among 0–5, 6–12, 13–17, and 18–27 year olds, respectively. The corresponding proportion of cases with a recorded diagnosis of intellectual disability was 17.4, 22.1, 26.1 and 29.4 %. Between 2001 and 2011, ASD prevalence increased almost 3.5 fold among children aged 2–17 years. The increase was mainly accounted for by an eightfold increase of ASD without intellectual disability (from 0.14 to 1.10 %), while the prevalence of ASD with intellectual disability increased only slightly (from 0.28 to 0.34 %). The increase in ASD prevalence is likely contributed to by extrinsic factors such as increased awareness and diagnostics.
If this study can be applied generally, then what autism truly looks like has changed, I would say redefined.

The result of that redefinition is that children whose autism has caused intellectual disability are being marginalized. The children with ID are also more likely to exhibit violent behavior which is very often self-injurious or directed at at inanimate object, but sometimes results in injuries to others.
These are not malicious attacks, but are an almost animalistic lashing out at anything near.

Every time these aspects of autism are covered over in the guise of presenting the disorder in a positive light. The people who suffer from those aspects become forgotten about.

I am lucky in that my daughter has not shown any sigh of epilepsy., another condition associated with
the damage done by autism. I don't have any worries about SUDEP. The damage done to the nervous system by autism can be deadly Speaking highly of autism makes people forget that..

When I say autism causes these things I mean the same damage done in the neural development caused the iD and epilepsy. I find it difficult to believe that the autism, ID, and epilepsy were caused by unrelated developmental problems.