2013: The Year Of Autism's Grand Error, The DSM5 Autism Spectrum Disorder

Photo by Harold L Doherty

Edward Ritvo-Susan Swedo Shootout at 

the IMFAR Corral, Sheraton, Toronto, May 18, 2012

The year 2013 will be remembered as the year the simplified DSM-5 Autism Spectrum Disorder definition was imposed on a very complex and diverse group of disorders and/or symptoms.  Catherine Lord, Susan Swedo and other members of the DSM-5 committee responsible for the definition change simply ignored criticisms of their proposals and pushed ahead because, in their minds, they know better than their critics.

It would be one thing if the DSM5 Autism Spectrum Disorder critics were simply parents like me. As mere irrational parents we had no standing, no credibility, no respect in the eyes of the DSM5 committee members and our views did not have to be considered.  What was amazing about the incredible stubbornness of the DSM5 committee members in pushing ahead though was the identity of some of the professional critics and the serious challenges that were dismissed without any serious response by the DSM5 team. Ritvo, Volkmar, Waterhouse,  are only a small sampling of the names of persons with important roles in the development of knowledge of, and thinking about, autism spectrum disorders who offered  criticisms of the DSM5 Autism Spectrum Disorder: 

"Abandoning criteria that have been in worldwide use for decades for new ones that may eliminate from 9% (their data) to 40% (prior reports) of previously diagnosed patients is neither scientifically nor morally justified."

- Commentary on the Application of DSM-5 Criteria for Autism Spectrum DisorderEdward R. Ritvo, M.D.; Riva Ariella Ritvo, Ph.D. Am J Psychiatry 2013;170:444a-445. doi:10.1176/appi.ajp.2013.12101376

Dr. Fred Volkmar created considerable awareness of the DSM5 ASD changes and their likely impacts with a  preliminary study reported on in well known New York Times article in early 2013.  In a May 2013 abstract he also noted that:

"While some of the changes employed in the new DSM-5 approach are praiseworthy, others are much more complicated. There appears to be some significant potential for diagnostic change, essentially as – despite what might conceptually appear to be a broader tent of the autism spectrum – the DSM-5 approach seems likely to result in a narrower concept. This raises some concern about the impact on services for children in need as well as for comparison with previous research. Sadly we are, to a considerable extent, still in the dark on the extent of this change. Although the focus on standardized diagnostic instruments has some important advantages in the real world of clinics and schools, clinicians will not have had the opportunity to undertake extensive training. In some cases the new (but relatively unclear) social communication disorder concept may be invoked, but the lack of research on this putative condition poses other problems and its use might well be taken as an excuse to avoid service provision."

Dr. Lynn Waterhouse worked with Dr. Lorna Wing on the APA DSM-III-R diagnostic criteria for autism and is the author of Rethinking Autism: Variation and Complexity (2012) whose book was reviewed on the Amazon.com website by several learned commentators including Dr. Peter Szatmari who noted that "Waterhouse squarely tackles the "elephant in the room" in autism research; the complex heterogeneity seen at all levels of analysis.  The argument is sustained, learned and comprehensive. We shall all be dealing with this challenge for decades." 

Dr. Waterhouse subsequently commented in an email to DSM-5 critic Dr. Allen Frances which he included in one of his Psychology Today commentaries on the DSM-5. In her email, after reviewing some of the reports and studies crtiquing the DSM-5's New Autism Spectrum Disorder Dr. Waterhouse stated:

"These and other independent research groups have reported that DSM-5 ASD criteria will significantly reduce the number of ASD diagnoses. Their findings counter Dr. Lord's claim that DSM-5 ASD criteria will not change the number of people diagnosed. Because nearly all of those excluded from a DSM-5 diagnosis have serious developmental social interaction impairment, they cannot be correctly diagnosed by any of the other DSM-5 childhood disorders, such as Social Communication Disorder or Intellectual Developmental Disorder. These children will need services that will be more difficult to obtain without a DSM-5 diagnosis. Unfortunately, the DSM-5 group has chosen to simply ignore data that don't conform with its beliefs." (Emphasis added, HLD)

The DSM-5 Autism Spectrum Disorder is a mistake, a huge mistake, supported not by research as was perpetually articulated by DSM-5 spokespersons but solely by the preferences and intellectual biases of of the DSM-5 committee team members who pushed the new definition ahead while ignoring contrary studies, criticisms and perspectives offered by MANY learned autism professionals and academics.

2013 is the Year of Autism's Grand Error - the DSM-5 NEW Autism Spectrum Disorder. 

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DSM5's Most Fundamental Flaw? Combining The Autism Disorders Into One Disorder

Autism Advocate Ari Ne'eman Speaking At the National Press Club

My  son's severe Autistic Disorder is not the same 

autism disorder as Mr. Ne'eman's.

The DSM5  autism do-over, the New Autism Spectrum Disorder, will come into effect in 2013.  There is a further opportunity to offer public comment about the radical changes being forced upon the public but the DSM5 committees who have shaped the New ASD in the image of their own research biases have shown no inclination to acknowledge the merits of any of the many criticisms of their handiwork. It does not matter whether the criticism comes from expert professionals involved with shaping previous editions of the DSM (Fancis, Volkmar)  or a stumbling, ignorant, hysterical father (moi) of a severely autistic son who has lived first hand, 24/7 for 16 years,  with the realities of severe autism and who objects to the targeting of the intellectually disabled for exclusion from the New ASD. No matter the source the  DSM5 team has not flinched and has not deviated from their own research biased views of autism.  (The DSM5 team swears that the New ASD reflects solid autism research. DSM5 autism team member Catherine Lord though  has acknowledged that autism research tends to excluded those with intellectually disability  while also confessing that the real aim of the New ASD is to exclude those same intellectually disabled from autism diagnoses.) The biggest flaw is not the possible exclusion of some at the highest functioning end of the spectrum or the likely exclusion of many with intellectual disabilities.  It is the combining of disparate disorders into one.

The biggest flaw of the new DSM5 is the combining of the many autism disorders into one disorder when even the most ignorant, ill informed and irrational of persons dealing with autism ... parents ... can see that there are huge differences between those who  have fashioned careers as public spokespersons for all persons with autism and those who can not function in daily life.  

Ari Ne'eman is an intelligent, eloquent university graduate comfortable in discussing his vast knowledge of autism before assembled groups from the US to the UK.  This young man can hobnob with the intellectuals at the IACC, state and federal politicians in New Jersey and Washington and mainstream media representatives at the US National Press Club in Washington.  He appears to be very comfortable in front of media cameras. My son at 16 has accomplished much in terms of where he started but he is still working at a Dr. Seuss reading level, working with great effort to make a full sentence, lacks understanding of the world, engages in repetitive behavior that can end with self injurious behavior.

As a father of a low functioning autistic son I can not see the deficits that  resulted in an autism disorder for Mr. Ne'eman.  As an autism advocate who has worked with and met some higher functioning kids with Aspergers whose limitations are still noticeable I can not see those same limitations in Mr. Ne'eman. I do not believe that Mr. Ne'eman's professionally diagnosed autism disorder, or the autism disorders of the members of the corporate board oranized by the very high functioning Mr. Ne'eman have any similarity to my son's diagnosed Autistic Disorder or to those with Asperger's that I have met. Still Mr N. , like his ASAN board members presumably have diagnosed autism disorders. 

What is clear though is that Mr. Ne'eman's disorder is not the same autism disorder that I have seen in my real life, daily,  experiences as a father or as an autism advocate.  In the latter capacity I have met a number of persons with Aspergers whose diagnoses are clear to anyone who speaks with them but they are still different from my sons. They are also different from the severely autistic persons I have met on visits to psychiatric hospital facilities where they reside here in New Brunswick.

I am not suggesting that Ari Ne'eman does not have an "autism' disorder.  I am not qualified to say that and I recognize that and respect his professional diagnosis.  I am qualified, as an observant human being, to say that Mr. Ne'eman's challenges are not the same as my son or many others with Autism and Asperger's that I have met.  To me I see no signs whatsoever of a disorder of any kind in Mr. Ne'eman but again I realize I am not a qualified professional  and I assume that those who provided his diagnosis were capable professionals.  Mr Ne'eman's autism disorder though does not remotely resemble my son's or other persons I have met with autism and Asperger's disorders.

In the opinion of this humble dad the combining of the various autism disorders into one disorder is a fundamental flaw in the New Autism Spectrum Disorder. 

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Volkmar Says Many Intellectually Disabled May Be Excluded from DSM-5 Autism Spectrum Disorder Diagnosis

When I first pointed out that the DSM-5 New Autism Disorder would exclude intellectually disabled I was ignored by most, insulted and mocked by others.  Some were annoyed. When Catherine Lord confessed that the intellectually disabled were the real target for exclusion very few mentioned the exclusion of the intellectually disabled from the DSM-5 autism definition.  Certainly not the New York Times and other prominent Mainstream Media institutions that have wrung their hands over the possible exclusion of the very high functioning Autism ruling class.  

When Fred Volkmar, who kick started the current uproar over the possible exclusion of some with high functioning autism and Aspergers, mentioned in a Yale Daily News interview the possible DSM-5 exclusion of many of the intellectually disabled it did not merit any response from the MSM:

"In its next manual on mental disorders, the American Psychiatric Association plans to issue a single set of diagnostic criteria that will merge the four types of disorders on the autism spectrum, which include autism and Asperger syndrome. Although no current patient will be affected by the new rules, research by Yale Child Study Center Director Fred Volkmar suggests that the revision may disqualify a large number of intellectually disabled patients from receiving a diagnosis of autism spectrum disorder in the future."  [Underlining added for emphasis - HLD]

The autism spectrum is not just a spectrum. It is a caste system with the intellectually disabled occupying the lowest rung unworthy of concern or comment from the mainstream media or feel good, autism is beautiful, Neurodiversity variety autism advocates.

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Discrimination by Any Other Name: Severe Autism Services and Resources Lacking, Severe Autism Research is Sparse

I have not been a big fan of the New York Times coverage of autism issues.  Specifically the NYT has downplayed  the seriousness of autism disorders. It has also downplayed the evidence based effectiveness of Applied Behavior Analysis as an autism intervention while promoting non evidence based interventions like Floortime. It comes as a pleasant surprise to read a recent NYT autism  feature in which experts, Dr. Fred Volkmar of the Yale Child Study Center and Dr. Lisa Wiesner, actually provided some unvarnished, truthful statements about severe, Low Functioning, autism realities even if that information was hidden under the feel good, High Functioning Autism focused title College-Bound and Living With Autism:

"Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.

But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors."

( Underlining added for the benefit of those who like to "Counter" any mention of severe autism realities)

The lack of services and resources for the severely autistic is a particularly offensive form of discrimination which sees those most in need of services receive the least help from society. The exclusion of low functioning autistic persons from autism services and resources stinks whatever the excuse offered.

The exclusion of severely autistic subjects from "autism" research is something I have previously noted.  The spate of recent fMRI studies mapping the alleged "autistic brain" have in fact been restricted to subjects with High Functioning Autism only. 

It is very encouraging to see this frank acknowledgement by two autism experts in the New York Times of the shortchanging of low functioning autistic persons that has been taking place.

It is most encouraging to read that the US federal government has identified severe autism research as a high priority  area in autism work.  

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