October 18, 2003: Andy Scott Called for a Strong National Autism Strategy; Will October 19, 2015 Deliver A Government That Will Make It Happen?

Andy Scott called for a REAL National Autism Strategy that would ensure treatment for autism 12 years ago,  Munson, Thibeault, and Stoffer have continued the fight tirelessy. Will October 19 bring Canadians a government prepared to make it happen?

Some good work has been done during this current election campaign in drawing politicians attention to the need for a REAL National Autism Strategy.  The Medicare for Autism Now's 1 in 58 campaign has produced considerable discussion in a number of selected ridings.  In Saskatchewan Shannon Hill and the PAAT group have engaged federal and political politicians.  Hopefully the government elected October 19 will do more than shell out money for a do nothing committee with no serious mandate like the Harper Party did during the past year.  The Green, NDP and Liberal Parties have all expressed some support for a National Autism Strategy that includes efforts to ensure that evidence based ABA treatment for autism will be covered by Medicare across Canada as Andy Scott called for 12 years ago. 

Following is text from a commentary I posted in 2010  which records  Andy Scott's call as reported by Tali Folkins in the Telegraph Journal and also acknowledges the tireless efforts of Senator Jim Munson, Nova Scotia NDP MP Peter Stoffer and former NDP MP Glenn Thibeault as reported by MetroNews.ca. 

WEDNESDAY, MARCH 31, 2010

Renewed Calls for a Real National Autism Strategy

Canada does not have a real national autism strategy but it is not for lack of trying by some dedicated federal politicians  including  Liberal  Senator Jim Munson and  NDP MPs Glenn Thibeault and Peter Stoffer who     have renewed calls for a real National Autism Strategy for Canada.

The struggle for a National Autism Strategy began many years ago including here in New Brunswick where Andy Scott issued a public call for a National Autism Strategy on October 18 2003:

""Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "

Tali Folkins, Telegraph Journal, October 20, 2003

Mr. Scott was successful in getting a commitment by the federal government to a National Autism Strategy recognized in principle but the strategy at that time did not commit to the hard action necessary to provide assistance to all parts of Canada in providing early autism intervention programs.  Even the National Autism Symposium which came out of that commitment was a sham, pure and simple, a sham.  Public autism advocates, including me were excluded from the Symposium.  Those in attendance were all screened by federal health agency involved with organizing the event to ensure that they would go along with the government's do nothing to help autistic children agenda.

Senator Munson has been literally crossing the country for several years fighting for a real national autism strategy  and he has not given up on his efforts.  He organized and  spoke in Ottawa yesterday at an event to mark World Autism Awareness Day this Friday, April 2, 2010:

“There’s no reason why we cannot treat autism within our own communities equitably across the nation,” said event organizer Senator Jim Munson. “There is a crisis and I know that we can come up with a plan to deal with the issue that is so important to all of us.”

MetroNews.ca, Ottawa, March 31, 2010

The event was also co-hosted by  NDP MP's Glenn Thibeault and Peter Stoffer who spoke at the event.  Mr. Thibeault also  introduced a private member's bill, seconded by tireless autism advocate Peter Stoffer,  to create a real national autism strategy, one that would actually help autistic children and their families by having the federal government work with the provinces:

"“Autism doesn’t discriminate based on geography.  It’s time for federal leadership to ensure that no matter where a child is born with autism, they receive equal treatment and services of the highest caliber.”

Glenn Thibeault,  March 30 2010

“I’m very pleased that my colleague has done this.  We’ve been asking for many years for the federal government to work with the provinces to develop a national autism strategy. I hope this will become a reality in the near future.”

Peter Stoffer, March 30 2010

Would My Son With Severe Autism Disorder Be Happier If I Had Listened to Robison, Ne'eman, Silberman & Other Strangers?

The picture above was taken a few days ago.  I believe anyone can look at the picture and see the happiness on my 19 year old severely autistic son Conor's face.   What is truly remarkable is that his happiness has been a constant feature of his life despite the very severe challenges that he faces with severe autism, intellectual disability (like 50% of persons with autism), epileptic seizures, life threatening adverse reactions to some seizure meds and self injurious behaviors.  What is perhaps even more remarkable is that Conor's happiness has been a constant in his life even without his parents listening to or giving any weight whatsoever to the opinions of self annointed autism experts like John Elder Robison, Ari Ne'eman, Shannon Des Roches Rosa, Jim Sinclair, Michelle Dawson, Steve Silberman or any of the other persons who attack parents for speaking honestly about their child's severe autism disorders and who actually support efforts to find cures and treatment for their autism disorders. 

The following are pictures of my happy son Conor thoughout his life although not in chronological order. We didn't follow or need the advice of the army of neurodiversity activists who are actually arrogant enough to believe that they know better than parents how to raise, care for and love their own children.  I have never hidden my disdain for their attempts to impose their so called self advocacy on other people's children. When I see my son who struggles with far more severe challenges than the self advocates who want to rule the autism world and yet is still happy and loved by those who know him I am very glad that I do not subscribe to their ideology. 

Fredericton Liberal Matt DeCourcey: Liberal Party Committed to A National Autism Strategy Addressing Access to ABA/IBI

Fredericton Liberal Candidate Matt DeCourcey

Email received October 2, 2015 from Fredericton Liberal Candidate Matt DeCourcey stating Liberal Party supports creation of a National Autism Strategy addressing ABA and IBI access and coverage under Medicare:

Hi Harold,

Thank you for the email. I apologize for the delay in my response. I want to let you know that the Liberal Party and I fully support the creation of a national autism strategy. Our party recognizes that in certain provinces, autism treatments, including ABA and IBI are covered under provincial Medicare programs and are more readily available in other provinces. Health care access challenges like these are something that the Liberal Party is committed to addressing.

First and foremost, we need a conversation that goes beyond simply mirroring previously made commitments. We need a partner in the federal government that is committed to innovation and collaboration with the provinces and territories to achieve a modern, efficient, equitable system of universal health care. The Liberal Party is committed to that collaboration.

A Liberal government will re-engage the provinces after 10 years of Stephen Harper neglect. We will meet on Canadian health care and negotiate a new Health Accord with the provinces and territories, including an agreement on long-term funding. Furthermore, our party is committed to pan-Canadian collaboration on health innovation. We will work with provincial jurisdictions to overcome obstacles to innovation in health care delivery and access.

Thank you again for your email. I hope that I’ve helped to clarify the Liberal Party’s position on support for those living with autism. If you have any further questions please reach out.

Best,

Matt

Research Review: Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?

My son Conor, now 19 1/2 years old, stimming, a recognized feature 

of autism spectrum disorder, in this older picture.

Conor, a couple of years ago, at the Chalmers Hospital 

intensive care unit, where he was being treated for  rhabdomyolisis, 

a serious adverse  reaction to his epilepsy seizure meds at that time. 

As the father of a son with autism spectrum disorder, intellectuall disability and epilepsy I have asked myself if these conditions are in fact related. It has been my non evidence based belief, based solely on observing, caring for and loving my son for almost 20 years that he has one condtion that affects him and causes his deficits.

I have attached a copy of the abstract of the reseach review Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?  I  hope to obtain a copy of the study itself and more importantly I hope that the study encourages more study and discussion by neurological researchers and professionals of this subject.

Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?

Abstract

Autism spectrum disorders and epilepsy commonly co-occur. In this review, we consider some unresolved questions regarding the temporal relationship, causal mechanisms, and clinical stratification of this comorbidity, highlighting throughout the interplay between autism spectrum disorder, epilepsy, and intellectual disability. We present data on the clinical characterization of children with autism spectrum disorder and epilepsy, discussing distinctive phenotypes in children with this comorbidity. Although some distinctive clinical features emerge, this comorbidity also informs convergent pathways in genetic variants that cause synaptic dysfunction. We then move beyond diagnostic categorization and consider the extent to which electrophysiology as a quantitative biomarker may help guide efforts in clinical stratification and outcome prediction. Epilepsy, and atypical electrophysiological patterns, in autism spectrum disorder may inform the definition of biologically meaningful subgroups within the spectrum that, in turn, can shed light on potential targets for intervention.
© The Author(s) 2015.

KEYWORDS:
autism spectrum disorder; biomarkers; electroencephalography; epilepsy; intellectual disability

http://www.ncbi.nlm.nih.gov/pubmed/26374786

Jeste SS1, Tuchman R2. J Child Neurol. 2015 Sep 14. pii: 0883073815601501. [Epub ahead of print]

Surprise! A Meaningful Autism Disorder Study Provides Evidence of Autism's Harsh Realities

Autism is a disorder which, far beyond its core diagnostic criteria, brings with it higher than average medical conditions and psychiatric illnesses.   The health status of adults on the autism spectrum study confirms the harsh realities of autism disorders and should not be ignored or lightly dismissed by academics, mainstream media or professional "self" advocates who, despite their very high functioning levels, insist on burying the harsh realities of the severely autistic, like my son, in the mounds of autism ignorance they dump on the public landscape. As the study indicates autism disorders mean significantly higher than average psychiatric illnesses and medical conditions.  Not much joy to be found in those realities.This study though should be helpful in bringing a much needed dose of autism realities to the  public understanding of autism disorders and the harsh realities that accompany them.

The health status of adults on the autism spectrum

1. Lisa A Croen1
2. Ousseny Zerbo1
3. Yinge Qian1
4. Maria L Massolo1
5. Steve Rich2
6. Stephen Sidney1
7. Clarissa Kripke3

1. ¹Kaiser Permanente Northern California—Oakland, USA
2. ²Kaiser Permanente Northern California—Santa Rosa, USA
3. ³University of California, San Francisco, USA

1. Lisa A Croen, Division of Research, Kaiser Permanente Northern California—Oakland, 2000 Broadway, Oakland, CA 94612, USA. Email: Lisa.A.Croen@kp.org

Abstract

Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive–compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson’s disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations.

Conor After Another Seizure

. 

Conor has been on  a good run for the previous 7-10 days and today was pretty much the same until 6:15 this evening when we heard a loud thump uupstairs.  His mom ran upstairs and screamed for help when she saw him convulsing on the floor with thick fluids oozing out of his mouth.  We had to keep him on his side with his head away from any corners or hard objects.   This was Conor's 4th grand mal seizure since Christmas. Conor's convulsions did not appear to last too long compared to some previous seizures ..  approximately 2 minutes.  Stilll 2 minutes of your son in convulsions is enough to scare you all over again. Conor also recovered quite well. The picture above was taken 45 minutes after the seizure and while he was still a bit groggy he was regaining alertness, speech and walking ability.  He is now sleeping soundly exhausted from another seizure.  I just checked and his head was on the side on his pillow  and he was breathing loudly but clearly.  Dad is starting to relax ... a little bit.

Medicare for Autism NOW! Campaign Kick Off Today!

Vancouver, BC – Today, the Medicare for autism Now! Society (“MFAN”), a non-partisan, not-for-profit, all volunteer organization, announced the launch of its nation-wide One in 68 campaign. “We will be holding a Campaign Kick-off this Saturday, June 27^th, at Douglas College, New Westminster, between 10:00 am and 2:00 pm,” said MFAN director and campaign manager, Dr. Sherri Brown, “It will outline the rationale for our initiative and lay-out our action and advocacy agenda leading to the federal election on October 19^th, less than four months away.”

The MFAN campaign takes its name from the fact that, currently in North America, one in 68 children are being diagnosed with Autism Spectrum Disorder (ASD). “There is a national epidemic of staggering proportion happening in Canada,” said MFAN director, Jean Lewis, “And, unlike the situation in the United States, our federal government has to date failed miserably to demonstrate long overdue leadership in addressing this major and growing national health care challenge.”

The One in 68 campaign will seek firm commitments from those who wish to hold elected office in Ottawa to vote in favour of necessary changes to the Canada Health Act so that persons living with ASD across our country will have science-based treatment for their core health need covered by Medicare. MFAN intends to focus its efforts on  a limited number of highly competitive electoral districts in various parts of Canada. In Metro Vancouver, these include: Burnaby North-Seymour, Coquitlam-Port Coquitlam, Delta, Surrey Centre, Surrey-Newton, Vancouver Centre and Vancouver Quadra.

  

For further information, contact Jean Lewis at 604-290-5737 or at jean.lewis@telus.net.

May Institute National Autism Center Review: Applied Behavior Analysis The One Intervention Determined To Be Effective For Adults With Autism

National Autism Center Completes Most Comprehensive Review of Autism Interventions Identifies Established Interventions for Children, Adolescents, and Adults on the Autism Spectrum 

National Autism Center Press Release 0.1 

Randolph, Mass. – Researchers at the National Autism Center at May Institute today released the results of the largest systematic review to date of interventions for autism spectrum disorder (ASD). Their findings identify 14 “Established Interventions” for children and adolescents that have the most research support, produce beneficial outcomes, and are known to be effective, and one Established Intervention for adults on the autism spectrum.

“The National Standards Project is an ongoing effort designed to give educators, families, practitioners, and organizations the information and resources they need to make informed choices about effective interventions that will offer individuals with ASD the greatest hope for their futures,” said Hanna C. Rue, Ph.D., BCBA-D. Dr. Rue serves as Executive Director of the National Autism Center, May Institute’s Center for the Promotion of Evidence-based Practice.

Leading the way in the field of adult intervention, this latest iteration of the National Standards Project also included an analysis of intervention outcome studies for adults (ages 22 and older) that have never been systematically evaluated before now.

The one intervention determined to be effective for adults, and nearly all of those classified as effective for children and adolescents, are behaviorally based, meaning they are grounded in the methodologies of applied behavior analysis, behavioral psychology, and positive behavior support.

In spite of the burgeoning population of adults with ASD, there is little empirical research to guide intervention for this population. The overwhelming majority of research studies to date focus on interventions for children and adolescents.

“Because of the dearth of research on adult interventions, only 27 studies focused on adults with ASD met our inclusion criteria,” said Dr. Rue. “Although we are pleased to be able to identify one Established Intervention, these results draw attention to the dire need for further research in this area.

“Children with autism grow up to be adults with autism; they will require effective interventions throughout their lifetimes to ensure they reach and maintain their maximum potential,” Dr. Rue added.

The National Standards Project is the only systematic review of ASD interventions for individuals across the lifespan based on behavioral and educational studies. Through a rigorous process utilizing tools and strategies designed and vetted by a team of national experts, the Project’s goal was to analyze the research that was conducted and the impact on participants, and to determine the strength and scientific rigor of that research. The results will help to inform decisions about interventions, or treatments, for ASD.

The report released today, Findings and Conclusions: National Standards Project, Phase 2, updated the Center’s first summary of the ASD intervention literature for children and youth under age 22. Phase 1 of the project was published in 2009. The combined the results of Phases 1 and 2 have produced the largest compilation of studies ever reviewed.

Nationally recognized experts in autism, as well as other leaders representing diverse fields of study, were involved in both phases of the National Standards Project and guided the process of evaluation. Dozens of article reviewers analyzed 1,165 studies related to interventions for ASD throughout both phases of the project. The interventions were subsequently categorized as 1) Established, and producing beneficial outcomes known to be effective; 2) Emerging, with some evidence of effectiveness, but still requiring more research, and 3) Unestablished, and having little or no evidence of effectiveness.

This new report identifies three interventions for individuals under age 22 that were identified as Emerging in 2009 and have now garnered enough scientific evidence of effectiveness to be moved into the Established category.

During the past five years, the National Autism Center has disseminated the results of the first phase of the National Standards Project to hundreds of thousands of individuals throughout the country and around the world through the publication of the National Standards Report.

 The new free report download:  http://www.nationalautismcenter.org/category/press-release/.

About the National Autism Center

The National Autism Center is May Institute’s Center for the Promotion of Evidence-based Practice. It is a nonprofit organization dedicated to serving children and adolescents with autism spectrum disorder (ASD) by providing reliable information, promoting best practices, and offering comprehensive resources for families, practitioners, and communities. For more information about the National Autism Center, please visit www.nationalautismcenter.org.

About May Institute

May Institute is an award-winning nonprofit organization with 60 years of experience in serving children and adults with autism spectrum disorder and other developmental disabilities, brain injury, mental illness, and behavioral health needs. The organization provides educational, rehabilitative, and behavioral healthcare services to individuals, as well as training and consultation services to professionals, organizations, and public school systems. At more than 160 service locations across the country, highly trained staff work to create new and more effective ways to meet the special needs of individuals and families across the lifespan. Learn more at www.mayinstitute.org.

Larry's Gulch Inclusive Education Review June 21, 22, 2012

Meeting of Senior Department of Education Officials With Gordon Porter And Other Advocates of Extreme Everyone In the Mainstream Classroom Inclusion June 20, 21, 2012
Information from CANADALAND web site.

L: Yude  M. Henteleff, C.M., Q.C., L.L.D. (Hon.)     R: Harold L. Doherty 
at the Atlantic Human Rights Centre Inclusion Conference Crowne Plaza Fredericton-Lord Beaverbrook, June 14, 15, 2012 Mr. Henteleff presented, a paper advocating for a range of learning placement optionsin order to ensure meaningful inclusion:  MEANINGFUL ACCESS, INCLUDING THE PROVISION OF A WIDE RANGE OF PLACEMENTS, AS AN INTEGRAL PART OF INCLUSIVITY IN EDUCATION

It was a privilege, on June 14, 15, 2012  to attend the Atlantic Human Rights Centre Inclusion Conference at the Crown Plaza in Fredericton and to meet the very distinguished lawyer and disability advocate Yude Henteleff above. I personally have tried for many years to advocate for a rational evidence based inclusive education policy that provides a range of learning environments to accommodate the diverse challenges and needs of persons with disabilities particularly students with autism spectrum disorders.  Unfortunately anything that was discussed at that conference was not likely to have been considered by the NB government and department of Education officials when they met with Gordon Porter, and other "all students in the mainstream classroom inclusion philosophy " one week later at Larry's Gulch.

Autism Spectrum Disorder has been increasingly recognized for its heterogeneity particularly with respect to cognitive deficits, sensory challenges, self injurious behaviors,  and learning disabilities.  In NB the fight for an education policy that allows for alternative learning environments to accommodate those students, like my son, who do not function well in the regular classroom, and can even be harmed by that location,  has largely been undone by Gordon Porter and the NBACL including various members of the influential Carr family and their NBACL associate Danny Soucy.  At the June 14 2012 conference above Mr Henteleff and I were  voices advocating for evidence based accommodation of the needs of students with disabilities.  Gordon Porter was there presenting individuals with anecdotal horror stories about segregation. 

The conference appeared to have been a waste of time and money.  One week later,  at Larry's Gulch,  senior education officials and government officials met with Gordon Porter, Canada's most  obsessive advocate for reducing learning options for all students to the mainstream classroom.  Neither I, a former ASNB president and long time critic of NB's extreme mainstream only inclusion policy, nor the distinguished lawyer and disability advocate Yude Henteleff were present.

I  met Mr Porter,  NBACL/CACL icon,  on several occasions during the MacKay and Ministerial Committee inclusive education reviews. During a breakout session in a room at the MacKay review Gordon Porter grew visibly annoyed with me and another ASNB parent advocate when we advocated a range of learning settings to accommodate some students with autism disorders who would have difficulty functioning in the mainstream classroom.  He dismissed our comments by telling us that "you people should be thankful" for what we had.  I  have no doubt that when he attended Larry's Gulch with fellow NBACL official,  and co-author of the last of several inclusive education reviews, Angela Aucoin, Krista Carr of the NBACL and her husband Jody Carr, then the Minister of Education, and Danny Soucy MLA and NBACL official at various times,  that he pushed his obsessive,  extreme inclusion philosophy and made no positive mention of the need for a range of learning environments to accommodate those with severe autism and other disorders.

I wasn't present at the Larry's Gulch inclusive education review but I am sure that it likely topped the  Wayne MacKay and Ministerial Committee reviews and any views that did not support the Gordon Porter extreme, all students in the mainstream classroom, inclusion philosophy.

Self Injurious Behavior, Seizures, Reduced Life Expectancy Are My Son's Severe Autism Disorder Challenges Not Concern Over The Expression #MSSNG

Self Injurious Behavior, a  common occurrence  in some with severe autism, can appear in  a flash and transform a happy, fun filled moment into pain and suffering as it does above with my son Conor.  The very high functioning autistics who do not share my son's disorder and challenges have no right to dictate what autism research will or will  not be conducted,  research that may someday help my son and others with severe autism disorders. 

The world has recently seen the very talented, successful  Jerry Seinfeld "identify"  with autism before retracting his statements. More recently John Elder Robinson and other high functioning autistics got very upset over the use of the expression #MSSNG coined for the Autism Speaks research campaign and demanded that autistics must  dictate the course of autism research.  My son Conor with his severe autism disorder, intellectual disability and epilepsy has no understanding of this high functioning autism outrage.  His problems are more in the nature of the serious self injury engaged in often as set out in the pictures above. 

Today, with the holidays disrupting his routines, Conor engaged in one of his most serious meltdowns in some time hurting himself and the walls and when Dad intervened I felt some of it too. I honestly can't relate to the concern that #MSSNG is somehow an insult and travesty to those with autism disorders not when I am trying to restrain my powerful, 210 lb  6'1" son without hurting him and at the same time protect myself in the middle of a serious meltdown. 

Statements below from the AAP.

American Academy of Pediatrics 

Management of Children with Autism Spectrum Disorders,  (2007)

Statement of reaffirmation  126 (6): e1622. (2010)

Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 

are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.

"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.  

DSM5 ASD Criterion D: No Clinically Signifcant Impairment in Current Functioning = No Autism

The DSM5 is certainly open to criticism; particularly in its combining of the pervasive developmental disorders into one Autism Spectrum Disorder ignoring the very large numbers of persons with DSM-IV Autistic Disorder who also suffer from Intellectual Disability.  One point which did make sense in the Autism Spectrum Disorder diagnostic criteria though is the one that is routinely ignored by those who glorify autism disorders ... Criterion D (underlining added):

Diagnostic Criteria for 299.00 Autism Spectrum Disorder

D.Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

The subscribers to the irrational view that autism disorder, a mental health disorder diagnosis, is not really a disorder after all are able to maintain their beliefs by ignoring reality particularly the realities faced by those with severe autism disorders.  They routinely claim every historical genius or artistic talent as an "autistic".  They argue for the purity of the autism spectrumm "condition" by pretending there intellectual disability is just a coincidence and has nothing to do with autism.  In that regard of course they are on the same page as the professionals who separate ID and ASD and call them comorbid conditions.  They fall off that page though and put distance between themselves and the autism health care professionals by ignoring the plain wording of the DSM5 ASD Criterion D.  

Unfortunately a Jerry Seinfeld has only to speak and his words are heard and debated around the world. JS "migh be autistic" and that is good enough for those who want to put distance between themselves, or their family members, and the intellectually disabled and impaired in their everyday life activities at the severe end of the spectrum were autism is exactly what it has always been ...  a disorder.

Very high functioning persons claiming to be autistic must be able to demonstrate, as stated in DSM5 299.00 Autism Spectrum Disorder  that the DSM5  autism symptoms cause  .... . clinically significant impairment in current functioning.  Otherwise they should not receive an ASD Autism Spectrum Disorder diagnosis and should not claim to be autistic. 

The Seinfeld-Descartes Autism Diagnostic Tool: "I think I am Autistic therefore I am Autistic"

The Seinfeld-Descartes Autism Diagnostic Tool: I Think I Am Autistic Therefore I Am Autistic

Many, especially many with very, very high functioning autism diagnoses have embraced Jerry Seinfeld's new test for autism "conditions" one that the great comic borrowed from philosopher Rene Descartes:  "I think I am autistic, therefore I am autistic".

With the Seinfeld-Descartes diagnostic tool it is no longer necessary for those who want to join the truly amazing autism club to obtain one of those pesky medical diagnoses.  Nor will it be necessary to demonstrate the presence of that nasty Criterion D in the DSM5 Autism Spectrum Disorder:

D. Symptoms together limit and impair everyday functioning. 

I am not aware of what limits or impairments that the extremely rich successful comic and family man Jerry Seinfeld has in everyday functioning. For that matter it is not clear what impaired everyday functioning has ever been exhibited by many claiming to be autistic, including former free ranging Aspergians but it doesn't matter in today's world.  Jerry Seinfeld's speculation about being autistic is enough for him to receive a warm embrace from the very high functioning autism self advocacy world and the mainstream media.

Seinfeld-Descartes Autism Diagnostic Tool - I think I am autistic therefore I am autistic.  JE Robison and Ari Ne'eman couldn't have asked for a better Christmas present.

My Son With Autism Disorder And Jerry Seinfeld Have Nothing In Common; Not Even An Autism Disorder Diagnosis

(Grainy) Composite Photo 0f Jerry Seinfeld by Harold L Doherty, 

Moncton Coliseum,  February 2012, 2 Years Before His Revelation That 

He "Might" Be "On "The Autism Spectrum"

Picture by Harold L Doherty of My Son Conor Doherty On His 2nd Birthday, The Day Before His Autism Disorder Diagnosis Was Received After Six Months Of Tests And Pediatric Observation

Jerry Seinfeld has revealed, at age 60,  that he thinks he might be "on the autism spectrum".  He may be right, I don't know and won't know unless he seeks a professional assessment and makes the result of that assessment known to the public.  Jerry Seinfeld is one of the great comic geniuses of our times, IMHO, and I and am a huge fan, which is why I travelled with Conor's older brother, Brandon, to see Jerry Seinfeld perform at the Moncton Coliseum 2 years ago.  (Thanks also to Charlotte and Luigi for their hospitality that evening).

 We were not disappointed and I am reminded of his amazing social observation based jokes everytime I "have a coffee".  I am, and am sure I always will be, a Seinfeld fan but I do not think for a moment, regardless of whether Jerry Seinfeld receives an autism disorder diagnosis that his condition or disorder resembles my younger son's in any meaningful way. My son like many "on the spectrum" suffers from intellectual disability, seizures, self injurious behavior, obsessive, persistent behaviors, sensory issues and  limited verbal communication. There is no way he could possibly put on a command performance and entertain an audience as Mr Seinfeld does.

Many high functioning autism "self" advocates and parents of high functioning children speak up for Mr Seinfeld's right to speculate about being "on the spectrum".  They don't really have to because to my knowledge no one challenges Mr. Seinfeld's  right to do so but they do anyway, a courtesy seldom extended to those with severe autism who can not speak for themselves and whose parents, family members and other caregivers,  THEIR ONLY REAL SELF ADVOCATES, must speak for them.  

My son was diagnosed at age 2 plus 1 day after several months of testing and observation because we, his parents, sought medical attention for his developmental delays and behavioral issues at an early age before we had even heard of autism.   Mr Seinfeld who has been a very generous supporter of autism causes thinks he "might be" "on the spectrum" at age 60.  The gap between those two realities is huge and says all that needs be said about the "unified" autism spectrum disorder. It also says much about the media which will jump for every adult who "comes out autistic" with an alternative way of thinking they call autism while ignoring the severe challenges facing those with severe autism disorders and their families and caregivers. 

Time for me to "have a coffee".  And thank you for sharing with us all your incredible gift for humor if you happen across this humble blog Mr Seinfeld.