Autism 2012: Disaster for the Autism Spectrum's Intellectually Disabled

"Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:"

Autism annual reviews have been published by a number of sources most of  which ignored or mis-characterized the most important autism event of 2012.  The most important event by far and the one with the most negative implications for those who actually suffer from autism symptoms was the APA approval, on  Saturday, December 1, just before the holiday season, of the DSM5 as it is now written including the new Autism Spectrum Disorder.  The new ASD will preclude future autism diagnoses for those most severely affected by autism symptoms: those with moderate to severe intellectual disability. 

I have written many times about the express targeting for exclusion of those with intellectual disabilities.   I have been virtually alone in my criticism of this exclusion but I stand by my objection to that exclusion.  It is reprehensible.  It helps  insurance providers and governments that seek to reduce provision of autism treatment and benefits.  It helps those academics and researchers who are building careers researching every trivial idea they find fascinating without helping or bringing anyone with an autism disorder any closer to treatment or cure of the symptoms which in fact restrict their ability to function in the real world.  They are now free to conduct autism research without the need to include difficult to work with intellectually disabled, severely autistic children and adults among their subjects. It helps those persons with High Functioning Autism and Aspergers, their parents and other loved ones, who feel stigmatized by association with low functioning, intellectually disabled autistic children and adults.

Intellectual opposition to the direction the DSM5 is taking autism did arise in 2012 in Rethinking Autism: Variation and Complexity by Professor Lynn Waterhouse. She has articulated in a very comprehensive analysis, backed by learned authorities on every point, the fundamental problems with the new streamlined, simplified version of autism.  The title summarizes her arguments succinctly: autism is in essence a group of symptoms characterized by variation, heterogeneity and complexity.  The unified, simplified DSM5 ASD ignores that heterogeneity.  Every parent, academic and clinician who has repeated Stephen Shore's caution,  now a cliche, "if you've met one person with autism, you've met one person with autism" knows that autism is heterogenous, varied and complex.  The DSM5 however, contrary to all research and real life experience, pretends otherwise.  The DSM5 ASD is a false step, a road block to the understanding of autism disorders, autism symptoms.  Debates over whether autism is increasing, and what factors are involved with causing autism will be muddied again for another generation by the redefinition of autism.

The moderately and severely intellectually disabled who otherwise display the social communication and restrictive, repetitive criteria of the DSM5's New Autism Spectrum Disorder, will not be included in the new autism diagnostic era. They will be relegated to the Intellectual Disability group which will receive very little research attention or dedication of resources.  After all it will be deemed wiser to concentrate resources, including treatment and cure research resources, on those for whom successful results are more likely .... just as the distinguished, open minded, intellectually conflict free and oh so compassionate members of the DSM5 autism committee have done in their pre-Christmas gift to the intellectually disabled, severely affected members of the pre-DSM5 autism spectrum.  

IMFAR 2010 Autism Research Report by John Elder Robison: It Was a Wonderful, Geeky World With No Talk of Cure

John Elder Robison,  for reasons that are unclear to me,  is both an officer with Autism Speaks AND a critic  of parents who seek cures for their children's autism disorders.  Mr. Robison apparently has an Aspergers diagnosis. He is, according to a biography posted online at Red Room,  an author, very successful businessman, and ... a former rock band member.   He is not a researcher or health care professional and as far as I can tell he has absolutely no personal involvement with Autistic Disorder or those who are severely affected by their Autistic Disorder. 

The life of John Elder Robison has no resemblance to my son's with Autistic Disorder and profound developmental delays or the lives of the 75-80 per cent of persons with Autistic Disorder. and Intellectual Disability.  Like Alex Plank, Amanda Baggs, Michelle Dawson, Ari Ne'eman , and the entire corporate board of ASAN,  JE Robison is a person with very High Functioning Autism or Aspergers who purports to tell parents of severely autistic children, and the world, what they need to know about all points on the autism "spectrum".  John Elder Robison has been to IMFAR the annual mega autism research update and he is  back to tell us that all is cool, all is geeky.

IMFAR has divulged,  amongst other autism research breakthroughs that will help improve the lives of severely autistic children and their families, that having an autistic child does not increase the likelihood a couple will be divorced. Great stuff, there is  hope indeed that autistic children will live better lives with that kind of groundbreaking scientific scrutiny taking place.  Of course  if we can improve the sensitivity and communication skills of PARENTS their autistic children will live better lives. No more talk of mercury, aluminum and other ingredients injected into children, or of the toxic materials that ooze from plastic toys and jewelry,  or are inhaled from nearby smokestacks, or the ultrasound pounding of the brains of unborn children because environmental insults can not possibly cause neurological damage. And hey Andrew Wakefield was found to be unprofessional and therefore vaccines and toxic vaccine ingredients and vaccines contaminated with pig viruses should never, ever be questioned.

For Mr. Robison's part he informs us that IMFAR was a pretty cool place to be because, well, because there were lots of geeks there,  and geeks are cool. They are "endearing and appealing" and of course there is the familiar JE Robison refrain that talk of curing autism is nonsense.  You can help improve the debilitating aspects of autism disorders but you can not outright cure autism or autism(s):

 "That summary pretty much describes all these folks on a professional level. These are not nine to five workers. There lives do indeed revolve around the unraveling of their individual bit of the autism puzzle. There is no talk of "cure" here. ... Many are married to geeks, or have kids on the spectrum, or seek to marry a geek or geekette. I have seen that particular scenario play itself out time and again these past few evenings in the after hours get-togethers. ... In closing, I will offer you this essential truth derived from my careful observation of my own Cubby, Alex Plank, and other young spectrumites in attendance here: If you are a female entering this world, be forewarned that it is a one-way trip. For once you Go Geek, there is no turning back. It only takes one date with an eccentric scientist or engineer – after that, an ordinary banker or business person will never do . . ."

John Elder Robison: A World of Geeks - IMFAR 2010

What is the difference between a treatment which ameliorates and a total cure other than the extent to which the autism disorder is "ameliorated"?  John Elder Robison does not explain nor does he provide any basis for his declaration that autism disorders CAN NOT be CURED and WILL NOT be CURED.  None at all.  We, including those of us who have severely autistic children, are to take his word for it because, well because John Elder Robison is slightly autistic.  

Although Robison is a very successful businessman, a father, a former rock band member, published author and a person who does not shun the media glare he knows better than me as a father who has cared for a severely autistic, intellectually disabled son for 14 years what it truly means for my son  to be autistic.

For John Elder Robison autism is not about an inability to communicate, self injurious behavior or living your life in a residential care facility. And it is certainly not about the intellectual disability that is just coincidentally associated with 75-80 of those with Autistic Disorder.  For John Elder Robison autism is  about being a geek and not talking about finding cures for autism disorders.  

Apparently IMFAR was a great place to be geeky and no one fouled the air with talk of curing autism

Hip, Hip, Hurrah.

Discrimination Against Persons with Low Functioning Autism

"My identity is attached to being on the autism spectrum"

-  Ari Ne'eman, Founding President, Autistic Self Advocacy Network, Obama Administration Disability Appointee, New York Times, Nov 3, 2009

I am typically the only one on ASAN's board to interject the issues of the LFA, because my son is one. Whenever I do this, I am attacked by a few, including Clay Adams. Clay doesn't like it when I discuss the LFAs on ASAN's board. Neither do a lot of people. I wouldn't be surprised if I was eventually kicked off that board at some point. I'm the only one that I know of that has ever been put into moderation mode there. The fact is, that Clay Adams has no interest in the LFA and never has.

There are others though that do think LFA needs more representation and advocacy on that board and in the online autism community. However, most don't want to really expose themselves for fear of being attacked like I have. They see what has happened to me and they don't want any of that to happen to themselves.

- Kent Adams, ASAN Board Member, Father of Son with Low Functioning Autism, quoted on  Autism's Gadfly Comment Section,  February 3, 2010

Any mention of Low Functioning Autism, autism and intellectual disability,  or autism and cognitive impairment is often met by hostility from some  persons with HFA/Asperger's.  Many of these persons identify with being on the "autism spectrum" as does Ari Ne'eman, the very high functioning university student  with Asperger's.  

Videos that portray the harsher realities of life for lower functioning autsitic persons are met with very high profile, media seeking protests by Ari Ne'eman and others who like to identify with the autism spectrum. ASAN which claims to be an autism "self" advocacy organization has no actual low functioning autistic persons,  on their Board of Directors, for the obvious reason that such a role would probably be beyond the ability level of persons with low functioning autism disorders.  As the comment by Kent Adams, a father of a low functioning autistic boy, indicates he is pressured to refrain from raising LFA as a topic for discussion by the ASAN Board.

The ASAN Board is comprised almost entirely of very high functioning persons "on the spectrum", lawyers, technicians, writers and university students.  ASAN has a very broad definition of autism going beyond persons with an autism diagnosis to include those who simply identify with  autism :

The terms "Autistic" and "autism spectrum" often are used to refer inclusively to people who have a diagnosis in any of the official categories (see Diagnosing Autism) or who self-identify with the Autistic community.

ASAN's broad definition of autism helps extinguish the concept of autism as a medical disorder or diagnosis and helps include higher functioning persons with no actual autism diagnosis.  At the same time the ASAN autism definition mentions intellectual disability only in a limited sense of difficulty with communication and describes such difficulty as a "different way of thinking" suggesting that it is usually accompanied by being gifted in other areas:

2. Non-standard ways of learning and approaching problem solving. For example, learning "difficult" tasks (e.g. calculus) before "simple" tasks (e.g. addition), difficulty with "executive functions," or being simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.

For persons who like to identify with "autism", whatever that means to them, it is easy to accept the unsubstantiated allegations that Mozart, Einstein, Van Gogh and other historical geniuses were autistic. When credible sources such as the CDC and CPA are cited to back up the claim that large numbers of persons with Autistic Disorder diagnoses are also intellectually disabled some bloggers with HFA and Asperger's, and even some autism researchers, react by dismissing or ignoring the information.  Kent Adams, noted above, has described receiving hostile reactions when he attempted to raise Low Functioning Autism issues on the ASAN board. 

The denial of the existence of Low Functioning Autistic persons, persons with Intellectual Disabilities  and cognitive impairment,  is discrimination. The reason why some persons with HFA and Asperger's  refuse to recognize the realities of large numbers of low functioning autistic persons while embracing undiagnosed higher functioning persons  is clear:

Identifying with "autism" is cool, it can make the person identifying with autism feel better in some way.  Who wouldn't want to identify with a Mozart or an Einstein? 

Identifying with those who are intellectually disabled is not cool. Identifying with those who live their lives dependent on the care of others, some in very secure institutions ... that's not so cool.

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ASAN Board of Directors Excludes Autistic Persons with Intellectual Disabilities

Approximately 75-80% of persons with Autistic Disorder also have Intellectual Disabilities or cognitive impairment. Yet ASAN, the "Autistic" Self Advocacy Network Board of Directors has no members who represent that large segment of the Autistic Disorder community. The ASAN site profiles its directors all of whom are, by the descriptions on that site, very intelligent and do not have an intellectual disability. It is not clear if persons with Autistic Disorder are represented at all since the Directors are all described as being "on the spectrum":

"Ari Ne'eman ... is currently studying political science in the Sondheim Public Affairs Scholars Program at the University of Maryland-Baltimore County and expects to graduate in May 2010.

Scott Michael Robertson ... has a bachelor's degree in computer science from Rensselaer Polytechnic Institute and a master's degree in human-computer interaction from Carnegie Mellon University. He is currently a Ph.D. Candidate in information sciences and technology at Penn State University's University Park campus.

Dora Raymaker, MS, Systems Science ... currently works on a number of research projects on topics related to healthcare and well-being (through OHSU, http://ohsu.edu), alternative and augmentative communication

Paula Durbin-Westby, B.A.(BA degree info obtained here) .... has testified at numerous IACC meetings

Meg Evans is currently employed in the legal publishing industry. She is a licensed attorney in the State of Ohio and received her law degree from Case Western Reserve University in Cleveland, Ohio. 

Elesia Ashkenazy  ...   possesses a B.A. degree in Speech & Hearing Sciences from Portland State University. She is a licensed Speech-Language Pathology Assistant (SLPA) (BA degee and SLPA license info obtained here)

Melanie Yergeau is a Ph.D. candidate in Rhetoric, Composition, and Literacy at The Ohio State University, where she also teaches courses in writing, digital media, and disability studies."

The ASAN purports to be an Autistic Self Advocacy organization yet it excludes from membership on its Board of Directors persons with Autistic Disorder and Intellectual Disability even though 75-80% of persons with Autistic Disorder are also cognitively impaired.  This is the same organization that rages and rants against Autism Speaks because it claims that its Board is not representative of the autism spectrum.   

None of the specific "autism spectrum" diagnoses of the Directors are disclosed so it is impossible to determine whether some of the Directors are persons with Autistic Disorder diagnoses.  In the case of Melanie Yergeau the ASAN site does not indicate whether she has an "autism spectrum" diagnosis at all.  In the case of Paula Durbin Westby the site indicates that she learned about being on the autism spectrum but there is no indication that she has an actual autism disorder diagnosis.  Meg Evans "was identified as autistic in early childhood". The site bio information does not indicate that she was actually diagnosed as having an autism   disorder. 

The lack of representation of persons with Autistic Disorder and Intellectual Disability on the ASAN Board is important in light of their claim to be an autistic self advocacy network working on behalf of all persons "on the spectrum".  ASAN has organized protests of awareness campaigns that portray the harsher realities of autism disorders and describes autism not as a disability in the medical sense but only in the social sense that a person with an autism disorder is someone who is simply different. It is only society's intolerance that creates the disability.

As the parent of a child with Autistic Disorder with cognitive impairment I can not see this falsehood being perpetrated without speaking out against it.  When I am dead or infirm my son will require the assistance of society in order to live and prosper. He can not survive on his own.  His reality is shared to a greater or lesser extent by the 75-80% of persons with Autistic Disorder who are also intellectually disabled. The brilliant directors of ASAN who are "on the spectrum" do not know him and do not share his challenges. They have absolutely no right to claim to represent persons with Autistic Disorder and intellectual disability to the extent that they do so in the guise of being "self advocates".

ASAN directors oppose curing autism. They declare that "WE" do not want to be cured.  Well and good.  If my son had their intellectual AND social skills I would not want a cure for him either. But he does not  have their abilities and many persons actually diagnosed with Autistic Disorder do not.

ASAN is wrong to oppose research aimed at curing autism. ASAN is an elitist group of high functioning individuals, some of whom may not even have an autism diagnosis, some of whom are known to have Aspergers diagnoses.  They all demonstrate social, behavioral, intellectual and communication abilities not typical of most persons with Autistic Disorder.

ASAN misrepresents itself when it claims to being a "self advocacy"  network for persons on the "autism spectrum".  It is a claim that should be dropped.

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Autism Reality On The Last Day of the Decade:The Autism Spectrum Concept Has Been Harmful, Part I

On this last day of this decade, as we prepare for 2010, and all that the next decade will bring,  it has become apparent that a major autism development of the last decade has been the growth of the Autism Spectrum concept.

The growth of  the Autism Spectrum concept has caused considerable harm to the interests of many persons severely affected by  Autistic Disorder, especially the 75-80% of persons with Autistic Disorder who are intellectually disabled or cognitively impaired. For these severely autistic their life realities are obscured and even hidden by the Autism Spectrum and by some high functioning, high profile media attractive persons who define autism in the public mind.

The Autism Spectrum concept has created confusion  about what constitutes "autism".  Some members of the public, talk show hosts, and  comics, joke about autistic persons as spoiled children who would have been given a good spanking back when they were kids. These people obviously do not see the children with Autistic Disorder who bite themselves, chew the insides of their cheeks, bang their heads until they cause injury, starve themselves out of aversion to food tastes and textures or wander away from their homes, some to be lost forever.  They see some very high functioning persons with no readily apparent disabilities who are "on the autism spectrum".

Yes, the mainstream media publishes reports when an autistic child or severely impaired adult goes missing. When an autistic Nove Scotia boy disappeared before a snow storm, and died of hypothermia, the media and Canadians reacted with genuine compassion and feeling for the poor boy and his family. But even then there was little in depth coverage of how many autistic children, and adults, go missing or the steps that have to be taken to ensure that others do not. Even the tragic death of  the young Nova Scotia boy did not prompt the mainstream media to thoroughly explore the harsher realities of autism disorders.

By contrast the media has been obsessed with promoting images of very intelligent, high functioning persons "on the spectrum" as the expression is used today.  CBC has many times featured Michelle Dawson, a person with "autism",  who excelled in the  challenging work environment of Canada Post and is now an autism researcher. CNN on several occasions featured  Amanda Baggs, a  very intelligent person who did not have an autism diagnosis earlier in life and who attended a school for intelligent,  gifted youth.

Today Alex Plank and Ari Ne'eman are the newer faces of  the "autism spectrum", two very intelligent young University students with Aspergers Disorder who tell the world what it is like to be Autistic, who take it upon themselves to tell the world that Autistic People do not want to be cured.   Mr. Ne'eman is an obviously intelligent gentleman with very highly developed communication and organizational skills.  He functions and operates very well in the complex world of Washington politics  and communicates regularly with the most influential media institutions in the world.  To the general public, and to the mainstream media,  Dawson, Baggs, Plank and Ne'eman are what they see when they close their eyes and visualize what it is like to be  "autistic".

It is no wonder that sufficient funds are not made available to support autism research, to find causes of, and cures for,  autism disorders.  The public  does not see the harsher realities of autism. They do not see lengthy, repetitive  features about the life of individual autistic persons with Intellectual Disability or autistic adults living in institutional care. The public sees a very positive image of autism, the one at the very highest end of the "autism spectrum".  As a general rule that is all that they see.

It is not an image that would necessarily generate much funding to find cures for autism disorders.  Especially when the media savvy persons at the high functioning end of the "autism spectrum",  tell the world that WE, referring to people "on the autism spectrum", including those with Autistic Disorder and  cognitive impairment, including those autistic adults living in the care of others,  do not want to be cured.

Without the "autism spectrum" concept, widely used today, a person with mild Aspergers would not be able, with a straight face,  to claim to speak on behalf of the severely disabled autistic persons whose harsher impairments, he or she,  does not share, and whose lives bear little resemblance to their own. The "autism spectrum" concept may have some useful diagnostic purposes, but it has also caused harm. It has helped keep the realities of the severely autistic, the 75-80% of persons with Autistic Disorder who are also intellectually disabled, the autistic children who hurt themselves, the adults living in institutional care, out of sight and mind.

There is a natural media, and human, tendency to want to see things in a positive light.  The media loves the high functioning end of the "autism spectrum" and ignores the harsher realities at the low functioning end of that same spectrum.  The autism spectrum concept itself allows them to do so with a clear journalistic conscience.

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Has Autism Speaks Abandoned Severely Autistic Persons and Their Families?

I am not an Autism Speaks basher.

I have criticized specific decisions it has made such as the funding of research by Dr. Laurent Mottron who believes that the idea of curing autism is nonsense. I am appreciative though of the great work Autism Speaks has have done in raising awareness of autism around the globe including its work, in conjunction with the State of Qatar, in creating World Autism Awareness Day. A couple of days ago I thanked Autism Speaks on this blog site for the I Am Autism video which speaks some of the harsher truths about autism, particularly the severe ... and original ... autism.

But Jonathan Mitchell, at Autism's Gadfly, and Roger Kulp, who commented on this site, are correct. Autism Speaks has "kowtowed" to the Neurodiversity movement led by a gentleman with Aspergers and some Aspergers and High Functioning Autism followers. Autism Speaks has removed the I Am Autism Video from their main web site pages.

The barely autistic have once again succeeded in suppressing free expression about the harsher truths of autism, the harsher realities confronting those who would be classified as autistic BEFORE the DSM definition was expanded to include those with good or excellent intelligence, good command of language and who can have good social skills. These are the people who rise up in protest and condemn parents such as those who actually created the "I Am Autism Video" ... because they dared speak the truth. They are the people who do not want the world to know about the original, now barely visible, autistics with severe autism challenges.

Autism Speaks did not stand behind the parents who created the Autism Speaks video. By "kowtowing", as Autism's Gadfly put it, Autism Speaks has taken a huge step toward abandoning the severely autistic and their families. I have been a supporter of Autism Speaks but that support is beginning to fade as this once helpful organization aligns itself with those who do harm to the interests of the severely autistic that Autism Speaks once helped.

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ABA, the Autism Spectrum and Conor's Schoolwork

There are some who forget that "autism" as that term is now used refers to a spectrum of disorders that reflect deficits in social, communication, behavioral ... and intellectual skills. Not everyone with an autism spectrum disorder will attend Simon's Rock College for gifted youth, collaborate with neuroscientists or appear on CNN and CBC to promote an agenda for all "autistics". But success is relative.

Conor has autistic disorder assessed with profound developmental delays. He did not receive 40 hours per week of ABA from ages 2 to 5. He has received ABA intervention in school for the past 4 years and he has an excellent aide trained at the UNB-CEL Autism Intervention Training program. Unlike some who appear in the media regularly and bash ABA Conor has actual first hand exposure to ABA. Conor enjoys ABA intervention, looks forward to school where he receives ABA and to visits from his therapist. And Conor has learned a great deal via ABA methods.

The pictures above are pages from Conor's school work that came home recently in his lunch bag. As you can see he has been doing a lot of work on subtraction. Today he is scheduled to be in the school kitchen making nachos.

We appreciate all of Conor's support at Nashwaaksis Middle School, especially his excellent aide and resource and methods team, and from School District 18.

We commend the government of New Brunswick which is making our small province one of the best places in North America for an autistic child to attend school.

Most of all we are proud of Conor and the progress he has made. Conor is happy when he attends school and for that we are very, very happy.

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