Waterhouse & Gillberg: Why Autism Must be Taken Apart

The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. - Waterhouse and Gillberg, Why Autism Must Be Taken Apart

I am not going to offer too much comment on the article by Lynn Waterhouse and Christopher Gillberg itself  which, as the title indicates, argues that autism must be taken apart, at least for research purposes.  I have not yet purchased or read the article. The abstract speaks very clearly and even I, as an ignorant, hysterical, misguided parent of a son WITH severe autism disorder, intellectual disability and epileptic seizures can understand. Waterhouse and Gillberg address themselves to the important needs of studying individual variation and finding specific treatments which are difficult to achieve in the artificially combined "autism spectrum disorder". 

The authors' views are important in and of themselves as autism experts.  They are also important because parents concerns on such subjects as the characterization, the artificial, non evidence based,  unification of autism disorder(s) are automatically dismissed.  The lumping of Aspergers in with autistic disorder under the pervasive developmental category of the DSM-IV created a whole new generation of extremely high functioning, adult diagnosed"autistics" and "free ranging Aspies" who declared that THEY speak for all persons with autism. Michelle Dawson even appeared as an "autistic" before the Supreme Court of Canada in the Auton Case to oppose government funded early ABA intervention for autistic children ... other people's autistic children. 

My son can not speak for himself.  As his father I speak for him and I know him best in doing so.   As a parent I reject absolutely the right, or the knowledge base, of Michelle Dawon, JE Robison, Ari Ne'eman or anyone else to speak on behalf of my son.  To those parents who think that the insights of some high functioning autism celebrities can offer assistance to their children I hope that, in their cases, they are right and I wish them well.   

Personally I hope that the autism research community follows the direction offered by Waterhouse, Gillberg, Insel who wrote about autisms and the lack of validity of the DSM generally, and Giacomo Vivanti who has commented on the need for researchers to look beyond the "pure autism" model of autism research.  Autism heterogeneity ... it is obvious to those who live in the real world of autism disorders ... it should be obvious and should be embraced by the autism research community.

Journal of Autism and Developmental Disorders

January 2014

Why Autism Must be Taken Apart

• Lynn Waterhouse, 
• Christopher Gillberg

Abstract

Although accumulated evidence has demonstrated that autism is found with many varied brain dysfunctions, researchers have tried to find a single brain dysfunction that would provide neurobiological validity for autism. However, unitary models of autism brain dysfunction have not adequately addressed conflicting evidence, and efforts to find a single unifying brain dysfunction have led the field away from research to explore individual variation and micro-subgroups. Autism must be taken apart in order to find neurobiological treatment targets. Three research changes are needed. The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. The noise caused by the thorny brain-symptom inference problem must be reduced. Researchers must explore individual variation in brain measures within autism.

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SFARI Continues Misrepresenting High Functioning Autism Only Research As "Autism" Research

The Simon Foundation Autism Research Initiative, SFARI, continues to represent studies involving only high functioning autistic participants to the public as "autism" studies.  In the Children with autism have trouble recalling memories article posted January 3, 2014 SFARI reports as an "autism" study a study which excluded as participants the 50% of those with an Autism Spectrum Disorder who also have an intell5ectual disability (World Health Organization estimate, September 2013):

"Children with autism have trouble recalling memories

Laura Geggel

3 January 2014

Children with autism struggle to remember details of events from their own lives, reports a study published 27 November in Development and Psychopathology. .... The researchers looked at 63 children with autism who have intelligence quotients of 70 or higher, and 63 controls, all aged 8 to 16."

The SFARI article/opinion piece makes no mention of the large numbers of persons with autism SPECTRUM disorder who also have an intellectual disability.  It did not caution members of the public that the study results may apply only to the higher functioning 50% of persons with autism disorder.  It is repeating the misrepresentation of high functioning autism only research as "autism" research as it did just just over a week ago in the article Autism brains are overly connected, studies find. 

Dr. Catherine Lord stated several years ago that autism research was marked by an under representation of subjects with intellectual disabilities:

"Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]

Autism research has continued to exclude persons with severe to profound intellectual disabilities, a practice questioned by Giacomo Vivanti and his colleagues in a recent article. It is now also widely recognized, at least outside of SFARI organization circles, that "autism" is very heterogeneous in nature. 

Intellectual disability is one of the  most numerically significant and important elements in the heterogeneous autism spectrum. Maybe someone could send a memo to the SFARI commentators. 

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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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Autism Media Rarity: Pittsburgh Post-Gazette Autism Series Includes Severe Autism And Family Impact

Julia Rendleman/Post-Gazette

Jeffrey Maloney, 19, is comforted by his mother, Lisa, 

during a family outing at the Pittsburgh Zoo & PPG Aquarium.

In a rarity in the mainstream media the Pittsburgh Post-Gazette published an honest, informed article by Mark Roth and Julia Rendleman on the challenges faced by a family with two children on the autism spectrum, one diagnosed as PDD and the other an adult son with severe autism disorder and the impact on the family, the Maloney family,  of caring for them.  The article was the first in a 4 part series on autism disorders run by the Pittsburgh Post-Gazette   called Mysteries of the Mind. The article talks about autism from two sides including the severe autism side and does not shy away from mentioning subjects well known to parents of severely autistic children such as disruptions in routine, metldowns and self injurious behaviors including pinching, head hitting and head banging against walls. The article presents the impact on the family of caring for the two autistic siblings including the impact on the other siblings.  As pointed out in the article there is much public attention paid to very high functioning persons with autism spectrum disorders but very little attention to severe autism disorders or the impact on the families of children with severe autism.  The Post-Gazette feature tries to address this very harmful lack of autism disorder awareness.  

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Neurodiversity Cultists Take Note: My Son Is A Joy; His Autism Is A DISORDER

Conor walking the North Riverfront Trail along the St John River, Fredericton

Many in the Neurodiversity cult, which irrationally embraces and worships the autism segment of the autism disorder diagnosis they sought for themselves, or their children, while discarding the DISORDER component of that label have, once again, attacked parents and other family members who dare to counter their perverse, ill informed ideology with honest depictions of their own kids autism disorders. Suzanne Wright's recent, honest, accurate, depiction of the challenges faced by so many with autism disorders and their families, has sent the autism cultists into what Autism Jabberwocky has called a collective conniption. Among the usual hate filled, knee jerk reactions is the allegation that family members, including parents, who talk honestly about the autism disorders they experience are describing the ND cultists' kids as monsters.  In truth it is only the ND cultists, those who praise autism as an Einstein like gift, who use the term monster in describing their autistic children.  

On this comment I am posting two sets of pictures (1) showing the joy we call Conor and (2) showing some of the harm inflicted by his autism DISORDER .  I have posted most of these pictures before and I don't expect the ND cult mongers who praise and misrepresent autism as a gift to actually pay attention to such evidence. They presume to know more about my son than I do.  For those, however, whose minds have not been frozen and locked forever in the Neurodiversity cult that worships here are these two sets of pictures which showns the realities of life with out son, the joy of Conor and the harm he suffers from his autism DISORDER. I believe the joy pictures speak for themselves.  The harm pictures will include a brief explanatory description.

(1) The Joy  of  Conor 

(2) The Harm of Conor's Autism Disorder

Conor engages in Self Injurious Behavior,

 including biting his hands and wrists. 

Conor has put his hands through glass windows and has to be 

watched closely when he is upset to ensure he does not do so again.

Conor's Self Injurious Behaviors include hitting himself in the head when frustrated/having a meltdown.  The picture above resulted from an incident at 3 am when Conor was hitting himself in the head with considerable force. I tried diversion strategies unsuccessfully and tried to grab his arms to prevent him from injuring himself.  He is much quicker than his old Dad and lunged forward and bit me on the bicep, biting through the skin and into the muscle resulting in the bruise above and calcium buildup. NO he was not trying to injure me, it was an example of what Dr. Sanjay Gupta called Reactive Aggression. 

Conor is very sensitive to noises usually the type of noise rather than the volume.  Some telephones ringing and some cars and motorcycle noises will set him off.  We use mobile phones in our home almost exclusively now because Conor has ripped the cords of our land lines out of the walls so many times. 

Conor, like a substantial number of the 50% of the autism spectrum who also have an intellectual disability also suffers from epileptic seizures. He suffered two grand mal seizures requiring attendance by ambulance at the Emergency room.  He ALSO suffered an adverse reaction to his medication which almost took his life and resulted in 2 weeks in hospital including 6 days in the ICU.  (Thanks again to the wonderful ICU Team at the Chalmers Hospital!)

10 years ago when we lived on Hillcourt Dr. above, just behind the parking lot of the Red Lantern pub marked above on the Google earth map, Conor wandered out of the house unnoticed.  Heather was in Nova Scotia and I answered the phone on a business call.  When the call ended Conor was nowhere to be seen.  After a frantic 911 call I recovered him from the Ultrasound gas station/convenience store on the corner of Main and Fulton above. Conor had crossed the busy parking lot of the Red Lantern Pub and also crossed a busy Saturday afternoon Main St.  Traffic was stopping to avoid hitting him and a good Frederictonian stopped his truck to take him to the Ultramar and alert 911.

I love my son dearly and I owe it to him to speak honestly about the autism disorder which limits his ability to function in this world and limits his life prospects. I will not misrepresent the nature of his autism disorder to make myself feel good.  I will fight all those who do misrepresent autism disorders as gifts. That is a promise I make to all including those at ASAN, TPGA and others who misrepresent autism to the world.  

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Autism Speaks Betrays Children, Adults With Severe Autism Disorders: Autism Speaks Blogger Calls Autism A Blessing

UPDATE NOTICE: Since this comment was published Autism Speaks has changed the title of the article I complained of from "Autism Diagnosis Is A Blessing In Disguise"     to   "Autism Diagnosis: An Unexpected Journey". Apparently the mother of a boy with autism who authored the blog comment in question also objected to the original title which was a creation of an Autism Speaks officer and done without her participation.  Nice to see that Autism Speaks will listen to some parents of autistic children even if they do still ignore persons with autism and intellectual disability,, their parents and family members, and the challenges they face together. (Thank you to Dasa Lessard for the UPDATE  Information)

Since my 17 year old son was diagnosed with autistic disorder and profound developmental delays (and more recently, like many who share those conditions, with epileptic seizures) little has been done to advance our knowledge of causes, to find treatments or cures for autism disorders.  In terms of our understanding of autism we have largely regressed in public understanding of autism disorders. 

There are some who talk about autism realistically but there are many who have adopted the perspective of some with very high functioning autism that autism is not a disorder after all.  It is very disheartening to see that Autism Speaks which has been dancing a long slow dance with the autism is a blessing Neurodiversity ideology has now fully consummated the relationship. You can read it for yourself on the Autism Speaks blog page under the title:  Autism Diagnosis Is A Blessing In Disguise written by a mother of a boy with high functioning autism. 

Autism Speaks has betrayed those with severe autism disorders and their families. 

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Autism Action Network: It Started: DSM5 Used To Revoke Autism Diagnosis

The Autism Action Network reports, in It started: DSM5 used to revoke autism diagnosis,  that the revoking of autism diagnoses under the DSM5 regime and the resulting denial of services and educational placements for people with autism disorders has begun.   Here in Canada the Childrens' Hospital of Eastern Ontario, CHEO, has excluded from its autism early intervention program a child it described as having global developmental delay, the express exclusionary phrase used in the DSM5 Autism Spectrum Disorder diagnostic definition.  Swedo, Lord and company were warned this would happen and stubbornly insisted that their vision of autism be imposed on the lives of children who would have otherwise received DSM-IV autism diagnoses.  Presumably they are happy to see the results of their efforts.

It started: DSM5 used to revoke autism diagnosis 

Share your story to stop the DSM5 

As many of us expected, the new definition of “autism” laid out in the Diagnostic and Statistical Manual, Fifth Edition (DSM5) is being used to deny services and educational placements to people with autism. We are receiving more and more reports from around the US (Buffalo, Dallas, Utica, etc.) of schools, Medicaid providers, insurance companies and local government service providers using the DSM5 to deny services to people who have an autism spectrum disorder. 

If you are facing difficulties or the loss of services as a result of the DSM5 please let us know. Please contact us atjgilmore@autismactionnetwork.org with your stories. Your stories will be a crucial component in stopping the DSM5. 

All the studies on how the DSM5 will affect people with autism have shown huge numbers will lose their diagnosis, their services, Medicaid and educational placement along with it. One study from the Child Study Center at Yale University showed a 55% reduction, including 30% of those categorized as low-functioning.

We have had bills introduced in several states including New York, New Jersey and Connecticut to require the continued use of the DSM4 and other diagnostic tools such as the ICD. We are working on getting bills introduced in other states. Illinois has already passed legislation prohibiting the use of the DSM5 to deny services. And we are working to prevent the federal government from using the DSM5. 

The DSM5 discards the labels of “Asperger syndrome” and “pervasive developmental disorder not otherwise specified (PDD-NOS)” Schools and insurance companies and Medicaid providers are using these changes to tell people who have an Asperger’s or PDD-NOS diagnosis that they no longer have “autism” and are losing insurance coverage, placements in special education and other services. 

The DSM5 is wrapped in controversy. The federal National Institute of Mental Health considers the DSM5 so flawed that they will not spend any research dollars on studies that use it. We do not have to put up with this. 

Please share this message with friends and family and please post to Facebook and other social networks.

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50% Some WHO Autism Awareness: Autism and Intellectual Disability 50%

Questions and answers about autism spectrum disorders (ASD)

Online Q&A
September 2013

Q: Do persons with autism always suffer from intellectual disability?

A: The level of intellectual functioning is extremely variable in persons with ASD, ranging from profound impairment to superior non-verbal cognitive skills. It is estimated that around 50% of persons with ASD also suffer from an intellectual disability.

The above information is taken from the World Health Organization website page providing Q and A about autism spectrum disorders.  Some will always choose to believe that autism and intellectual disability are totally unrelated concepts.  It is easier to do when autism studies routinely exclude participants with intellectual disability.  The research exclusion of participants with intellectual disability, as admitted by Catherine Lord,  is nothing more than a convenience for researchers and reflects the researchers own subjective biases about the nature and causes of autism disorders.  The DSM5 committee that excludes persons with global developmental delay from an autism diagnosis have also done so based on their own subjective biases and prejudices, nothing more.  They had no data or evidence or coherent rationale to support their decision.  

Parents with children in the 50% spectrum with autism and intellectual disability can't just walk away from our children.  We must do what we can for them and live in fear of what happens to them when we grow too old to care for them or when we ultimately pass on.  These are not realities faced by the DSM5 team who have now given a green light to early autism intervention providers like the CHEO to exclude children with autism and profound intellectual disability by expressly excluding those with global developmental delay from an autism diagnosis.  

"Autism" research will be easier, autism intervention programs will be less strapped thanks to the DSM5 team that, contrary to their claims, have expressly excluded many with severe autism AND intellectual disability.  The basis for the exclusion is nothing more than their own subjective belief in a "pure autism" as that belief was described by Giacomo Vivanti. 

I recommend that every parent of a child in the 50% of those with autism who also have an intellectual disability speak up and provide the world with some reality based autism awareness, make the world aware of the 50% not favored by network television series, movies, major news publications, autism researchers and the DSM5 committee members who arbitrarily decided to expressly excluded many with intellectual disability from the autism spectrum of disorders.

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#autism gene AUTS2 tied to dyslexia ADHD epilepsy ID motor delay microcephaly MORE SYMPTOMS should be part of ASD DX

"Dr. Lynn Waterhouse @autismideasfail 6 Sep http://bit.ly/17WbZVi   #autism gene AUTS2 tied to dyslexia ADHD epilepsy ID motor delay microcephaly MORE SYMPTOMS should be part of ASD DX"

The above Tweet by Dr. Lynn Waterhouse, author of Rethinking Autism: Variation and Complexity,  who also worked with Dr. Lorna Wing on the APA DSM-III-R diagnostic criteria for autism,  should be read by any existing DSM5 committee members charged with developing modifications to DSM-5 diagnostic criteria. The DSM-5 has doubled down on the failed approach of simplifying autism contrary to solid evidence and research. 

Dr  Waterhouse's tweet comment on the study Function and Regulation of AUTS2, a Gene Implicated in Autism and Human Evolution suggests to this humble father of a son who suffers from  severe Autistic Disorder (DSM-IV), profound Intellectual Disability and epileptic seizures, including two recent Grand Mal seizures, suggests as does her thorough, well researched Rethinking Autism text that the DSM-5 is taking autism disorders down the wrong path, a path that will cause serious harm to autistic children and adults and to the research necessary to develop successful evidence based interventions for autism symptoms and disorders.

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Alex Spourdalakis Killing Exploited by Neurodiversity Extremist Emily J. Willingham

Parents who speak honestly about the realities of autism disorders and the few journalists who dare challenge established views of autism causation are under attack .... again ... by Forbes Columnist Emily J. Willingham, formerly known, a few years before her Forbes career, as blogger Daisy May Fatty Pants.  Not content to express her legal opinions about the outcome of the criminal charges that have been brought against the accused killers of Alex Spourdalakis, his mother and a woman described by Willingham as Alex's "godmother",  Willingham launches into a tirade against parents who describe the harsher realities affecting those with severe autism disorders, parents of children with severe autism, children who do not sit as corporate trustees on organizations like the ironically named "Autism Self Advocacy Network" corporation:

"It’s become typical, again and again, for parents who murder their autistic children to get some kind of a “pass” from the commentariat and the news media because, well, autism is “such a challenge.” That’s in part because some autism organizations and members of the news media have successfully presented autism as a “monster” and a “ kidnapper” instead of as the developmental condition that it is. So in the public mind, an allegedly overwhelmed mother with “ no supports” should certainly be pitied and not judged harshly for killing the “monster.”"

I am a Canadian, not an American, lawyer.  Whether in Canada or in the US though I would not presume to know the outcome of a judicial proceeding.  Since there does not appear to be any question about WHO killed Alex Spourdalakis,  or that his killing was intentional, and if those appearances are confirmed in court,  I assume all relevant evidence will be considered in determining what sentences will be handed out to the accused.  That evidence will probably include the stresses on those involved including the mother's mental health at the time of the relevant actions and the mother's views on why she killed her son.

As the father of a 17 year old son with severe autistic disorder, profound developmental delays and epileptic seizures I know that once I have passed on my son's life prospects will almost certainly diminish.  Now at home and school he is living a happy life by the measure of anyone who knows my son including those who know him best ... his mother and father.  My son is cherished and I would not and could not do what the mother of Alex Spourdalakis did but I can not stand in the shoes of Alex's  mother,  I have not lived the stresses and challenges she has faced.  

The realities of life with a severely autistic child can be very, very stressful and it has been often in our household.    Some people break under pressures.  To date neither I, nor my wife have broken.  As a lawyer I have some advocacy skills and I have been active in advocating for early intervention and school services for children with autism in our province.  Some people have also flattered me as being of strong character .... others have simply pointed out, probably more accurately,  that I am just stubborn. 

I am continuing to advocate for early intervention and school autism  services and for adult autism residential care services.  My autism advocacy efforts have received some modest recognition as a New Brunswick recipient of the Queen Elizabeth II Diamond Jubilee Medal:

I do not mention my modest accomplishments for the purpose of self aggrandizement.  I mention them because despite the challenges faced in our home arising from caring for the severely autistic son  we love I also have some advantages, as a lawyer with an advocacy career,  in coping with those challenges. Not all parents enjoy similar advantages in dealing with the stresses and pressures of raising a child with severe autism disorders. 

 While attending a law school class reunion brunch several years ago I brought my son Conor with me.  I didn't know if, or for how long, he would be able to manage the event.  As it turned out he loved it. The ball room in which the brunch was held, my classmates and families present were quite orderly and the food was excellent.  Conor was quiet and enjoying the view when a waitress at the event approached our table and asked if he was autistic.  I answered yes but asked her how she knew since he had been sitting very quietly, happy and I thought unnoticed.  She replied that she had 3 children of her own.  I have never forgotten that encounter or the realization that for her as a waitress, without a professional advocacy background,  and with the challenges of raising not 1 but 3 autistic children she probably faced greater challenges than I could imagine.  I have tried not to judge other parents of autistic children the way Willingham and other business sponsored "autism is a condition .... not a disorder" Neuordiversity ideologues do.   

Whether Willingham and other business publication writers,  vaccine industry sponsored writers and Neurodiversity extremists like to admit it or not when people receive an autism diagnosis, which is a medical diagnosis,  they do so because autism is a disorder not a "condition".  The term is now formally known as Autism SPECTRUM DISORDER with three levels of severity with respect to the varying levels of support in daily living required: support, substantial support or very substantial support.  My son requires very substantial support as it appears Alex Spourdalakis did. 

It would be better, instead of using his death as a launching pad for attacks on parents who do not share her Neurodiversity "autism is a beautiful, alternate way of thinking" ideology  if Willingham would actually use her bully pulpit at Forbes to explore the harsh realities confronting those with severe autism and their families and actually advocate for services for them.  But no I won't hold my breath waiting for such a great awakening.  

A US court will determine the fate of the mother of Alex  Spourdalakis.  I suspect, despite pressure from Forbes' columnist Willingham and other business sponsored writers and Neurodiversity ideologues the harsh realities of the life of Alex Spourdalakis, his severe autism disorder and the impacts of that disorder on his family will become known to the public. 

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Autism`s 40% With Intellectual Disability? Auti$m $peak$ Doesn't See YOU, Doesn't Speak For YOU!

Autism Speaks has done much to create publicity around the word autism, the color blue, puzzle pieces and ... some very talented, high functioning individuals with autism diagnoses like Alex Plank and J. E. Robison.  In terms of its public statements and presentations though it does little to nothing to  raise awareness about one very basic fact: autism has a very close relationship with intellectual disability to the extent that 40% of persons with autism spectrum diagnoses (DSM-IV) also have intellectual disability. 

Prior to the DSM-IV and prior to the addition of PDD-NOS and Aspergers persons with intellectual disability constituted the vast majority of persons with autistic disorder.  Autism Speaks has reluctantly acknowledged that 40% of persons with autism have intellectual disability but does not reflect their existence in their press releases.  Autism Speaks conflicted attitude toward those with autism and intellectual disability was illustrated vividly in the recent Drake and J. Cole lyrics uproar when Autism Speaks defended persons with autism but not those with autism and intellectual disability. Instead of criticizing the rappers for their derogatory reference  to persons as “autistic, retarded." Autism Speaks went further and argued that in fact persons with autism are very successful and talented. No mention was made in the Autism Speaks press release of the 40% of the autism spectrum who are intellectually disabled even though the words "mentally retarded." have been replaced by the words intellectually disabled.  

Autism Speaks chose not to stand up for the intellectually disabled members of the "àutism community" even though they were  expressly  maligned in the original lyrics:

Hip Hop Lyric Insults Autism Community

"Lyrics from the recently released song “Jodeci Freestyle” from hip hop artists Drake and J.Cole have many in the autism community up in arms. The song, which was released last month and is now getting airplay, contains the following lyric by J. Cole: “I’m artistic, you n----s is autistic, retarded." 

These lyrics are offensive and perpetuate negative stereotypes. There are many inspiring individuals with autism and other disabilities who have achieved great success across a variety of artforms, including music. We encourage J. Cole to recognize their talents and learn from the positive example they have set for all of us."

This is not the first time Autism Speaks has chosen to ignore the intellectually disabled 40% while promoting the very, very, very high functioning elite members of the autism spectrum like J. E. Robison and Alex Plank.  There is almost never any mention of the intellectually disabled in promotions and news releases by Autism Speaks or on their web site.  I have previously noted that Autism Speaks has only reluctantly acknowledged the existence of intellectual disability on the About Autism section of its web site burying mention of 40% with ID in the middle of the page, book ended by references to those with high IQs and abilities.

In the "rapper incident" AS went further than just ignoring those with autism and intellectual disability.  They implied that persons with autism, all persons with autism, are in fact talented, successful people.  They were ashamed to mention and defend the 40% with autism and Intellectual Disability.  The rappers have offered sincere apologies and taken steps to address the issue by changing the lyrics.  Rapper J.  Cole even acknowledged the existence of those with severe autism and their families.  By their actions Drake and J. Cole have shown themselves to be ahead, light years ahead of Autism Speaks in caring about ALL persons on the autism spectrum including the 40%  intellectually disabled.  

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Dear Anna Kennedy: Please Stop Misrepresenting Autism, Autism Is A Health DISORDER NOT a Gift

Anyone  described as "having autism" or "being autistic" 

would have received an autism disorder diagnosis 

pursuant, in all likelihood, to either the DSM or the ICD 

Dear Anna Kennedy

My 17 year old son Conor who was diagnosed 15+ years ago with "autistic disorder" (now autism spectrum disorder) and profound developmental delays ( a euphemism for intellectual disability) is truly a gift. Conor brings great joy to our lives as shown on the sample pictures that follow.  While Conor is a joy, however, his autism disorder is not.  Nor is his autism disorder a GIFT or a SUPER ABILITY.

Conor's autism is a disability and a disorder and that is WHY he received a medical diagnosis of autism (autistic disorder).  While there may be some autistic individuals with special gifts he is not one of them.  Conor is one of the 40% of persons with autism and intellectual disability.  As you probably know that combination also makes him more likely to suffer from epileptic seizures and indeed Conor has suffered two grand mal seizures in six months.  He also suffered a life threatening reaction to his anti-seizure medication at the time. Other challenges brought by his autism disorder are wandering, self injurious behavior (self biting and head banging) and obsessive behaviors.  There is abundant literature indicating that those with autism, ID and epilepsy are at particular risk of shortened life expectancy.

Drake and Cole deserve to be admonished for their denigration of persons with autism AND for their denigration of persons with intellectual disabilities.  The solution, however, is not to circulate a petition which claims that autism is a gift or a super ability. In doing so you mislead the public about serious, challenges faced by the vast majority of persons with autism DISORDERS.  If you continue to misrepresent autism to the world you will probably cause harm to people like my son who in fact suffer from their autism disorders.  

I have been advocating publicly in my home province of New Brunswick, Canada for 15 years with other parents and we have achieved some success in ensuring that NB children with autism receive evidence based early intervention and that autistic students receive assistance from autism trained education assistants and resource teachers.  I have visited two psychiatric hospital facilities and met severely autistic adults living out their lives in those institutions and I continue to advocate for modern residential care and treatment options for adults with autism.

Any successes we have achieved, or hope to achieve, are based on presenting accurate, informed, evidence based portrayals of the realities of autism disorders to government decision makers and to the public at large.  Portraying autism as a gift misleads everyone about the real challenges faced by many with these very serious disorders.

Please reconsider your misleading public characterization of autism as a gift and super ability and acknowledge clearly that autism disorders are exactly that ... disorders.  My son is a gift, his autistic disorder is not. 

Respectfully,

Harold L Doherty

Fredericton, New Brunswick

Canada

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DSM-5 Autism Emperors' Ridiculous Assumption

"The fifth edition of the diagnostic and statistical manual of mental disorders (DSM-5) (APA in diagnostic and statistical manual of mental disorders, Author, Washington, 2013) has decided to merge the subtypes of pervasive developmental disorders into a single category of autism spectrum disorder (ASD) on the assumption that they cannot be reliably differentiated from one another."

LY Tsai, M. Ghaziuddin (JADD 2013) DSM-5 ASD Moves Forward into the Past

I agree with the observations of Tsai, Ghazuiddin and Dr. Waterhouse.  I have none of their outstanding academic and research  qualifications.  I am a humble Canadian labour lawyer, the father of a severely autistic 17 year old son, with "profound developmental delays" who has, like 25% of those with severe autism and intellectual disability also suffered from serious grand mal seizures.  My 17  year old son, who I love dearly, whose joyful visage adorns the sides of this blog,  reads at a Dr. Seuss level.  He is not autistic in the manner of a Michelle Dawson who appeared at the Supreme Court of Canada to argue as an "autistic" against the parents from British Columbia who were seeking Medicare coverage for evidence based ABA treatment for their autistic children.  My son is not autistic in the manner of an Ari Ne'eman who graduated from university, founded a corporate entity called ASAN, participates as a member of the IACC and lectures journalists on what it means to be autistic in a meeting of the Washington press corps.

I don't have the academic autism credentials of the distinguished names mentioned above.  I do have credentials as an autism father who has loved and cared for a severely autistic son for 17+ years. I have credentials as an autism advocate who, in my home Canadian province of New Brunswick, has advocated with other parents with success for early evidence based intervention for autistic children, autism trained Teacher Assistants and for the continuation of a tertiary care autism center for NB children and youth when threatened with closure by bureaucratic decree.  In my continuing advocacy for autistic adults I have visited psychiatric hospitals where they have lived in the absence of a residential care system to meet their needs. I have conducted many meetings with other autism parents as the Autism Society New Brunswick and met many autistic children and adults from my son's severe end of the spectrum to the very high functioning "Aspergers" end. 

What my experience, what my daily life for 17+ years has always told me, is that there are vastly different realities facing those on the autism spectrum. There is no evidence justifying the lumping together of these hugely different realities under the label Autism Spectrum Disorder.  To borrow the words of Dr. Waterhouse autism to any reasonably informed observer is marked by heterogeneity and complexity.

As Tsai and Ghazuddin have said the DSM-5 ASD is counter to evidence and is based on the assumption that "they cannot be reliably differentiated from one another."  

That assumption is not just wrong. It is in the humble opinion of this informed autism father a ridiculously false assumption.

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40% Intellectual Disability In Autism Disorders: Coincidence or Consequence?

I have never subscribed to the assumption that Intellectual Disability is a co-morbidity as described by the authors of a new study examining Intellectual  Disability in Autism: (unrelated in etiology and causality from the ASD itself)  I have been frustrated by the historical tendency of  "autism" researchers to exclude intellectually disabled autistic subjects from their research studies.  I am very disappointed with Dr. Lord, Dr. Swedo, Dr. King and other APA members for their efforts to further the artificial disassociation of Intellectual Disability from Autism Spectrum Disorder (s) in the DSM5.  I have always believed, as the father of a severely autistic son with "profound developmental delay", and contrary to the "autism as strength" ideology of Dr. Laurent Mottron and Michelle Dawson, that autism and intellectual disability are inseparable components of my son's condition. I am very pleased to see reports of a new study, as set out in this brief online paper by the authors of that study, which begins to examine the ID and ASD relationship front on and with complete intellectual honesty.  

I hope that the proof of principle resulting from the study  that "ASD symptom severity contributes to the extent to which the environmental input required to support “typical” brain development can be processed by the individual, so that the risk of developing ID increases as the number and severity of ASD social-communicative impairments increase"  is pursued further and that additional research on this topic is not squelched by the political correctness of those who control autism research funding dollars.

I also hope that researchers study the ID in ASD issue from  different perspectives:  that the ID increases the severity of the ASD symptoms and that ID and ASD are simply different aspects of one condition.   This humble father  does not believe that my son's severe autism symptoms and ID are separate coincidental or "comorbid" conditions.  I am pleased to see these "down under" Austalian researchers joining the ranks of the few with the intellectual honesty and curiousity to study the Intellectual Disability component of autism symptoms and disorders.

Intellectual development in autism spectrum disorders: new insights from longitudinal studies

Giacomo Vivanti^1,2*, Josephine Barbaro¹, Kristelle Hudry¹, Cheryl Dissanayake¹ and Margot Prior^1,3

•   ¹Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University, Melbourne, VIC, Australia
•  ²Victorian Autism Specific Early Learning and Care Centre, La Trobe University, Melbourne, VIC, Australia³
• ³ Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, VIC, Australia

The presence/absence of Intellectual Disability (ID) is considered to be the most critical factor affecting outcomes in individuals with Autism Spectrum Disorders (ASD). However, the question of the specific nature of ID in ASD has received little attention, with the current view being that ID is a comorbid condition (i.e., one that is unrelated in etiology and causality from the ASD itself). Recent advances in developmental neuroscience, highlighting the importance of early exposure to social experiences for cognitive development, support an alternative view; that ID in ASD might emerge as a consequence of severe social-communication deficits on the experience-dependent mechanisms underlying neurocognitive development. We tested this prediction in two independent samples of young children with ASD (Ns = 23 and 60), finding that children with greater ASD severity at an initial assessment were more likely to present with poorer cognitive outcomes at a later assessment, irrespective of initial cognitive level. The results of this proof of principle study suggest that ASD symptom severity contributes to the extent to which the environmental input required to support “typical” brain development can be processed by the individual, so that the risk of developing ID increases as the number and severity of ASD social-communicative impairments increase.

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