Gene-Environment Autism Disorder Research CHARGEs Ahead With New Air Pollution Study

The belief that autism is 100% genetics has always seemed to me to be nothing more than that ... a belief ... a non-evidence based ... unscientific belief. But what do I know? I'm not a scientist, just a parent with a keen interest in autism disorders.  I was privileged to attend, courtesy of an invitation from Autism Speaks Canada, the IMFAR 2012 conference in Toronto but was disappointed, with respect to autism cause research,  that most of the environment oriented autism research was consigned to the "boards" posted outside of the main presentation rooms.  Very little that I could find was actually featured about environmental autism research.  To the best of my knowledge genetics autism research continues to receive the overwhelming share of autism research dollars and media attention. I am happy to see that a new gene-environment interaction autism study has been completed,  and is gathering some attention, a study  by first author Heather E. Volk, Ph.D., M.P.H., assistant professor of research in preventive medicine and pediatrics at the Keck School of Medicine of USC and principal investigator at The Saban Research Institute of Children's Hospital Los Angeles and senior author Daniel B. Campbell, Ph.D., assistant professor of psychiatry and the behavioral sciences at the Keck School of Medicine of USC :

"Autism spectrum disorder: Interaction of air pollution with the MET receptor tyrosine kinase gene," online ahead of the January 2014 edition of Epidemiology.

The abstract concludes that "MET rs1858830 CC genotype and air pollutant exposure may interact to increase the risk of autism spectrum disorder." On the Science Codex site the article Air pollution and genetics combine to increase risk for autism provides a report and summary I can digest and highlights the significance of the study:

"Although gene-environment interactions are widely believed to contribute to autism risk, this is the first demonstration of a specific interaction between a well-established genetic risk factor and an environmental factor that independently contribute to autism risk," said Daniel B. Campbell, Ph.D., assistant professor of psychiatry and the behavioral sciences at the Keck School of Medicine of USC and the study's senior author. "The MET gene variant has been associated with autism in multiple studies, controls expression of MET protein in both the brain and the immune system, and predicts altered brain structure and function. It will be important to replicate this finding and to determine the mechanisms by which these genetic and environmental factors interact to increase the risk for autism."

The Science Code article points out that the Campbell/Volk team studied 408 children between 2 and 5 years of age from the Childhood Autism Risks From Genetics and the Environment Study which is described at its home page on the UCDavis web site:

"CHARGE (Childhood Autism Risks from Genetics and the Environment) was launched in 2003 as the first comprehensive study of environmental causes and risk factors for autism and developmental delay. The CHARGE study recognizes that no single factor accounts for all autism cases, nor is there one event or exposure that can be responsible for the rapid increase in diagnoses over the last few decades. Instead, each child’s path to altered brain development may be different."

With all the recent, angry, irrational attacks on Autism Speaks by Neurodiversity cultists it is worth pointing out that Autism Speaks is one of the sponsors of the CHARGE study which the Campbell/Volk study team used for its research data.

The study authors point to the need for more studies replicating their results.  Hopefully more such gene-environment autism research can be conducted.

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An Excellent Week For Autism Advocacy! Suzanne Wright Speaks Out and John Elder Robison Resigns

Thank You Suzanne Wright!

It was a good week for reality based autism advocacy for two reasons. First, I was very encouraged by Suzanne Wright's very honest description of the many challenges facing persons with autism disorders and their families in Autism Speaks to Washington - A Call for Action. Second I was very pleased to see John Elder Robison, an extremely high functioning and very successful, free ranging Aspie, who refuses to acknowledge that autism is a disorder that should be cured, resign all his positions with Autism Speaks.  It appears that Autism Speaks may be abandoning its attempts to mollify the Neurodiversity ideologues that have caused so much harm to those with severe autism disorders. Hopefully its fund raising expertise can now be used to encourage the research necessary to help all persons with autism disorders and to develop national autism strategies to implement evidence based autism interventions in the US ... and in Canada.

I encourage everyone who actually cares about helping persons with autism disorders to read Suzanne Wrights powerful article in full.  I am very impressed with her courage in speaking so openly and honestly about the realities faced by many with autism disorders, their families and caregivers:

"Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse. 

These families are not living. 

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7. 

This is autism. 

 Life is lived moment-to-moment. 

In anticipation of the child’s next move. In despair. In fear of the future. 

This is autism. 

On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally. 

Maybe they have been up all night caring for their teenage child who’s having a seizure. 

Maybe they are up yet again changing the sheets because there’s been another bed wetting accident. 

Maybe their child has been trying to bite them or themselves. 

Maybe they can’t afford the trip to a doctor specializing in autism. 

Maybe there is a waiting-list for ABA, speech and OT. 

Maybe their insurance won’t pay. 

Maybe they don’t have the money to pay a special lawyer to fight for school services. 

This is autism.

If any of this sounds familiar, you know autism. And if you know autism, you know we are looking at a monumental health crisis. And, we have no national plan."

I have a 17 year old son who suffers from severe autism disorder who has hit himself in the head repeatedly, bitten his hands repeatedly day in and day out until he was removed from the mainstream classroom and received his ABA based instruction (for which I and other parents had to fight) in a separate learning environment.  He has put his hand through glass windows.  He suffers from seizures and almost died in an adverse reaction to his previous seizure medication (as determined by the ICU team that saved his life at our local hospital).  He has suffered serious meltdowns as a result of obsessive behaviors. Disruptions of routines can also be extremely difficult.  He once left our home unnoticed and wandered across a very busy street oblivious to car traffic dangers until a good citizen of Fredericton stopped and took him to a nearby Ultramar service station/convenience store, called 911 and waited until I arrived to bring my son home.  The consequences could have been much different and I have never lost sight of what might have been.  24/7 care is absolutely the rule in our house. 

I am all too familiar with Suzanne Wright's list. I know autism.  I believe fervently that researchers should be focusing on finding cures and treatments for all autism disorders not the meaningless "remediation" advocated by the very high functioning J E Robison who opposes the very concept of curing autism.  I am very happy to see that Mr. Robison has abandoned his attempt to persuade Autism Speaks to stop seeking  real understanding of autism, to stop seeking treatments and cures for autism.  Above all Mr Robison's departure may help Autism Speaks find its way to once again speaking honestly about the challenges facing all persons with autism disorders including the 50% on the autism spectrum identified by the World Health Organization as also suffering from an intellectual disability.

Thank You Suzanne Wright!

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High Functioning Autism Speaks Continues Betrayal of 50% of Autism Spectrum With Intellectual Disability

Autism Speaks continues its betrayal of the 50% of persons on the autism spectrum, those with intellectual disability, those for whom  autism is a disorder not a superior way of thinking or the possible subject of a new TV comedy series or a career as a well paid "autism" advocate with "Autism" Speaks. 

In the October 11 2013 blog "An Emphasis on Strength: Finding Fulfilling Employment" Sarah Andrews, Autism Speaks Coordinator of Adult Services, and mother of two sons with autism, talks about the interests of her two sons "on the spectrum".  Ms. Andrews offers the current feel good drivel that is circulated widely now and which simply pushes aside, as the DSM5 does, those with severe autism disorders, specifically those with serious intellectual disabilities ... global developmental delay:

"Focus on your child's strengths and interests and hopefully he 

or she will find a career that is fulfilling and rewarding." 

This may come as a shock to Ms Andrews and the rest of the Very High Functioning Autism Speaks organization but most children receive an autism disorder diagnosis because of their deficits, not because of their strengths or interests.   Many families are literally trying to live each day with their severely autistic, intellectually disabled child, usually a son, to the best of the PARENTS ability. Some lose the battle when an autistic child goes missing and is found in the worst of circumstances.  Some deal with noise levels, and chaotic conditions, that can result in threats of eviction from apartments and condominiums as is now occurring in Ottawa. Some see self injurious behavior in their child on a regular basis. Some struggle to communicate with their child.  

The corporate officers at High Functioning Autism Speaks are reportedly well paid.  They should offer more than feel good platitudes and meaningless tripe as advice to parents dealing with their child’s harsh realities.  The corporate officers at High Functioning Autism Speaks should at least PRETEND they care about the 50% of the autism spectrum with intellectual disabilities. At the very least they should not engage in the misrepresentation of autism challenges to the world at large. 

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Autism Speaks Enters Into "PURE" Autism Research PACT; Excludes Autism With Intellectual Disability

Autism Speaks has entered into a Research PACT to continue its focus on "pure autism"  (referred to in the PACT as core symptom autism),   while ignoring 50% of the autism spectrum, those with intellectual disability (WHO, September 2013):

"Working together, the PACT team is developing a platform of preclinical tests to evaluate and compare new medications for the core symptoms of autism."

Vivanti and his colleagues offered the term "pure autism" to refer to the tendency of autism studies to intentionally exclude subjects with autism AND intellectual disability:

"the question of the nature of the association between ID and ASD has received little attention. One common view in the current conceptualization of ASD is that ID is a comorbid condition that occurs over and above ASD symptomatology in some individuals with ASD (Nordin and Gillberg, 1998; Cashin et al., 2009; Matson and Worley, 2013). The term “comorbidity” is used in medicine to denote clinical entities “unrelated in etiology or causality to the principal diagnosis” (e.g., cancer diagnosed after a stroke), and therefore conceptually distinct from complications or sequelae of the principal diagnosis (Greenfield, 1989; Iezzoni, 1994, p. 52; see also Lilienfeld et al., 1994). Other authors suggest that ID and ASD are related in terms of their etiology (i.e., that which causes ID also causes ASD) but they are not themselves causally related (e.g., Waterhouse, 2013). The perspective according to which ID is a distinct additional entity to ASD is reflected in many aspects of ASD research. For example, many studies report that participants with “comorbid ID” were excluded, to allow for the study of “pure autism”; that is, autism not confounded by ID."

The need to study the existence of intellectual disabilities and autism disorders was highlighted in 2004 by La Malfa:

"There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. ... The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID."

Autism Speaks has routinely obscured the existence of "autism's vast majority" (CDC medical epidemiologist Dr. Marshalyn Yeargin-Allsopp, CMAJ, 2010) who also have intellectual disability. Apparently it is not helpful for fundraising to point out the harsh realities of of autism disorders suffered by those with intellectual disability, many of whom, like my son, also suffer from epileptic seizures. This latest research venture accentuates Autism Speaks refusal to deal with the harsh realities of the disorder. Far easier to talk about blue lights and parade "autism" representatives with no apparent daily functioning impairment like John Elder Robison in front of the world than to face the autism reality faced by many with autism and intellectual disabilities and their families.

I hope the Autism Speaks PACT helps those with "Pure Autism" who do not suffer from the aggravated challenges of intellectual disabilities and epileptic seizures. Hopefully too "PACTS" will be formed by organizations that are willing, unlike Autism Speaks, to deal with the harsher realities of the intellectually impaired end of the "autism spectrum". 

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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 Breakthrough? Autism Speaks Recognizes Autism Heterogeneity!

Rethinking Autism Variation and Complexity by Lynn Waterhouse is a recent work which provides a thorough, expert and extremely well researched picture of the variation and complexity of  autism spectrum disorders.

Hopefully the rest of the professional and academic autism community will read Rethinking Autism and come to grips with autism variation, complexity and heterogeneity. The highly influential autism advocacy corporation Autism Speaks has typically done a poor job of representing the heterogeneity of the autism spectrum of disorders. AS has aggressively promoted the careers of John E Robison and Alex Plank two very, very high functioning persons with Aspergers/Autism Spectrum Disorders.  At the same time Autism Speaks has also obscured the existence of the 40% of persons estimated to have autism and an intellectual disability and the large number of persons with autism who also suffer from epileptic seizures.


In what may be a major breakthrough for Autism Speaks, in the post Geraldine Dawson era, and a possible step forward in public understanding of autism disorders a high ranking Autism Speaks official, Michael Rosanoff, Autism Speaks associate director for public health research and scientific review, has acknowledged the heterogeneity of autism spectrum disorders in clear, unambiguous terms, in  a Detroit Free Press article Brain changes of autism may begin in the womb:

"Rather than one disease, autism is now regarded as a collection of conditions with similar traits but different causes, Rosanoff says. People on the autism spectrum are extremely diverse. Some are non-verbal and profoundly disabled; others have successful careers, particularly in science and technology, describing themselves as different, rather than disabled. "Autism is so heterogeneous," Rosanoff says. "We're never going to get to the one cause.""

For anyone else, including other Autism Speaks officials who want to catch up to Mr. Rosanoff in understanding autism disorders, autism researchers and major media columnists interested in a thorough, scholarly view of autism spectrum disorders I strongly recommend Rethinking Autism: Variation and Complexity by Lynn Waterhouse. 

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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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Severe Autism Breakthrough: J. Cole Offers Sincere Apology And Acknowledges Existence of Severe Autism

Rapper J. Cole has offered what appears to this observer to be a very sincere apology, one offered without qualifications and one which actually offers a breakthrough for those who, like my son, suffer from severe autism. Unlike most prominent autism advocates rapper J. Cole actually acknowledged the existence of, and included in his apology, those at the severe end of the autism spectrum.  

Many autism advocacy organizations and "self" advocates routinely denigrate anyone who mentions severe autism disorders. Television series, movies and feel good mainstream media rarely acknowledge the severe, low functioning end of the autism spectrum. Rapper J. Cole's apology, however,  set out on his blog, DREAMVILLAIN, extended to all persons with autism disorders including those with severe autism and their families. 

I hope Autism Speaks, in particular, takes note of Cole's references to those with Aspergers AND those with severe autism and their families. If Rapper J. Cole can acknowledge the existence of severe autism surely Autism Speaks can do the same and start addressing the challenges facing the 40% on the autism spectrum who also suffer from intellectual disability and the many spectrum members who suffer from serious "comorbid" conditions like epileptic seizures. Cole's apology is set out hereafter in full, as stated on his blog, with my underlining added. 

Autism Speaks

Recently there’s been a trend that includes rappers saying something
offensive, only to be attacked for it in the media and pressured to
apologize. I have to be completely honest and say there’s a part of me
that resents that. I view rap similar to how I view comedy. It’s going
to ruffle feathers at times. It’s going to go “too far”. I do not
believe that an apology is needed every time someone is offended,
especially when that apology is really only for the sake of saving an
endorsement or cleaning up bad press.

With that said, this is not the case today. This letter is sincere.
This apology IS necessary.

In a recent verse on the song “Jodeci Freestyle”, I said something
highly offensive to people with Autism. Last week, when I first saw a
comment from someone outraged about the lyric, I realized right away
that what I said was wrong. I was instantly embarrassed that I would
be ignorant enough say something so hurtful. What makes the crime
worse is that I should have known better.

To the entire Autism community who expressed outrage, I’m moved and
inspired by your passion, and I’m amazed at how strong you are as a
unit. I have now read stories online from parents about their
struggles and triumphs with raising an Autistic child and I admire how
incredibly strong you have to be to do so. It’s touching. It also
makes what I said even more embarrassing for me. I feel real shame.
You have every right to be angry.

To anyone suffering from Autism, either mildly or severely, I am
sorry. I’m bound to make mistakes in my life, but in my heart I just
want to spread Love.

I want to educate myself more on Autism, and I’ll gladly own my
mistake and serve as an example to today’s generation that there’s
nothing cool about mean-spirited comments about someone with Autism.
People with this disorder and their loved ones have to go through so
much already, the last thing they need is to hear something as
ignorant as what I said. I understand.

To the parents who are fighting through the frustrations that must
come with raising a child with severe autism, finding strength and
patience that they never knew they had; to the college student with
Asperger’s Syndrome; to all those overcoming Autism. You deserve
medals, not disrespect. I hope you accept my sincere apology.

Much Love

-Cole

Well said Cole, well done. 

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Sound Advice for Autism Speaks

In yesterday's commentary  Autism Speaks Joins Drake And J.Cole In Insulting 40% With Autism AND Intellectual Disability I criticized Autism Speaks for stigmatizing persons with Intellectual Disability, particularly the 40% of persons on the autism spectrum with ID, the 40% that Autism Speaks seldom acknowledges in its promotions and literature.  

I received the comment, posted above, from BLOOM - Parenting Kids With Disabilities editor Louise Kinross that expresses my issue with Autism Speaks' approach to intellectually disabled members of the autism spectrum better than I did. It would do Autism Speaks and the autism community it purports to represent  a great service to give serious consideration to Louise's comment. 

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Autism Speaks Joins Drake And J.Cole In Insulting 40% With Autism AND Intellectual Disability

Autism Speaks has joined rappers Drake and J. Cole in insulting persons with Intellectual Disability particularly the 40% of the autism spectrum with intellectual disability.  The rappers had published song lyrics referring in an insulting manner to persons who are "autistic, retarded".  Autism Speaks did not simply criticize the rappers for denigrating persons who were autistic or intellectually disabled. Autism Speaks criticized the rappers for perpetuating negative stereotypes and for failing to recognized the many persons with autism and "other" disabilities who have enjoyed great success and talents.  

Presumably it would have been OK in the view of Autism Speaks if the rappers had mocked only the 40% with intellectual disabilities or those who were not successful or did not display exceptional talents.   It is not clear to this father of a severely autistic son with profound developmental delays, who lacks an exceptional talent, who Autism Speaks for but it clearly does not speak for my son. 

There are no doubt many in the high functioning end of the autism spectrum community who would  be insulted by the rappers lyrics ... my son who would not understand the lyrics is not one of them. I love my son and I take insult at the smarmy lyrics of Drake and Cole simply because they intended to insult persons like my son who are autistic and/or intellectually disabled not because they failed to recognized the talents and intellects of higher functioning persons with autism disorders. I am also ticked off, but not surprised, by Autism Speaks for essentially endorsing the rappers mocking of intellectually disabled a term which does not even appear in the Autism Speaks criticism.   Nowhere are autism's 40% intellectually disabled more invisible than within the Autism Speaks agenda:

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."

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Mother Of An Autistic Son Asks Autism Speaks for Some Actual Autism Awareness

The following commentary  is from the blog Muslimah Next Door  written by Dishad Ali. It addresses an issue that I have raised several times - the lack of real autism awareness created by autism awareness events. The author's comments at Muslimah Next Door under the title When an Autism Awareness Event is Anything But are followed by a letter from  Harshita Mahajan the mother of a teenage autistic son addressed to Autism Speaks.  I sincerely hope that Autism Speaks takes the mother's concerns, and the contents of her letter, seriously and begins to provide during autism awareness events awareness of the realities of autism disorders including some of the challenges presented by autism mild and severe. 

"We’ve hit the middle of April, and while there was a flurry of focus on autism at the start of the month, it still is very much “Autism Awareness Month.” Awareness events sponsored by local and national organizations continue to occur across the United States, but sometimes I wonder how much real “awareness” is actually happening? How many of these events just serve as fundraisers for the organizations sponsoring it?

Fundraising is not bad, and of course autism organizations must capitalize on the attention garnered in this month. But, if you’re going to frame event as “autism awareness,” then there be some education happening to make people “aware” of what autism is, what it entails, how it can be manifested. (Unless it is a closed event just for the autism community) There better be autism ambassadors at these events making sure things go as smooth as possible for those with autism (and without) who attend said events.

My friend Harshita Mahajan took her autistic teenage son Sahil to an autism awareness event recently sponsored by Autism Speaks, at which her son had a lapse of self-control. What happened after that was upsetting and resulted with Harshita leaving with her son. For this to happen at an autism awareness event – well the irony is not lost on me. Read her story. Share it. Let’s make sure events advertised as being about ”autism awareness” educate people, not just fundraise."

I encourage anyone interested in autism disorders to read the letter by Harshita Mahajan as posted on the Muslimah Next Door blog under the commentary When an Autism Awareness Event is Anything But.

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Autism Speaks Reluctantly Confesses: 40% Of Persons On Autism Spectrum Have Intellectual Disability

Intellectual Disability remains the Elephant in the Autism 

Living Room;no one wants to admit it's there or to talk about it

It is politically incorrect in today's autism world to acknowledge the existence of the invisible autistics, the one's unlike Ari Ne'eman, John Elder Robison, Alex Plank and  Michelle Dawson all of who whom have enjoyed great success and demonstrate considerable intelligence and most of whom have never met a television camera or gathering of journalists that offends them. Some of the extremely high functioning superstars of autism "self" advocacy have literally built careers telling the world what it means to be "autistic".   Meanwhile those with intellectual disability who constituted autism's "vast majority" prior to the DSM-IV expansion of the pervasive developmental disorder category to include Aspergers remain invisible and unmentionable in polite, successful autism circles:

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.

Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp 

Against that background I must give some slight praise to Autism Speaks for daring to mention, albeit hidden deep in  the FAQ section, carefully book ended by reference to autistic savant skills and those with normal to above average intelligence, that, Oh My Gosh,  40% of persons on the autism spectrum have an intellectual disability:

What Does it Mean to Be “On the Spectrum”? 

 Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have intellectual disability (IQ less than 70), and many have normal to above average intelligence. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently.

Autism Speaks, like the APA committee that drafted the DSM5 autism criteria to exclude the most severely intellectually disabled from an autism diagonosis even if they meet all the specific criteria for an autism spectrum disorder, does not wish to openly speak the truth: intellectual disability is not just a co-morbid or coincidental disorder that just happens to be present in the vast majority  of cases of classic autistic disorder. It is for the original vast majority a description of their  developmental deficits, while those with Aspergers do not have intellectual or language deficits most of those with Autistic Disorder do.  The intellectual disability is a feature of their autism disorder whether extremely high functioning Aspergers self advocates, fund raising entities like Autism Speaks or even the APA wish to acknowledge it.  

There is no reason to artificially separate the intellectual disability from the "autism" symptoms.  There is no scientific basis for doing so and it is morally and ethically wrong to do so.   

It is scientifically unsound to hide the reality that intellectual disability is an integral part of autistic disorder.  It is just as immoral and unethical to hide that reality, to pretend that intellectually disabled are not truly autistic as it would be to pretend that persons of different racial, gender characteristics or sexual orientations do not count as full human beings. 

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Wright Is Right: Autism Has Become An Epidemic

Bob Wright co-founder of Autism Speaks testified before ta US National Congress  committee and made a number of important points including what is obvious to those who are actually paying attention to autism realities: autism has become an epidemic.  The usual suspects, those autism researchers who study whatever suits them, whatever narrow issue they find interesting or can build a career around, remain in denial. The deniers have no solid evidence to support their position.  It is really quite simple. They are wrong.  Autism is an epidemic. Wright is right.

Parents and other family members with 24/7 responsibility for caring for the autistic children we love can not ignore autism realities. Many of us can see the autism epidemic and we can not redefine our children's challenges out of existence by amending the DSM every few years. (Yesterday the APA voted to accept the new DSM5 including the New Autism Spectrum Disorder that will expel many with autism and intellectual disability and complete the reshaping of Asperger's as Autism.) We can not pretend autism is not a disorder or that gee whiz autism always existed.  We are not comforted by the idle speculation that all of history's  scientific, literary and artistic geniuses are all examples of "the autism advantage".

We must deal with reality, autism reality, in all its manifestations.  Many  parents, grandparents and other family members caring for autistic loved ones can not and do not ignore the reality that autism numbers are increasing. When Bob Wright addressed a US Congressional committee and spoke about the autism epidemic he spoke a truth that is obvious to many parents, grandparents and family members: there is an autism epidemic. Autism researchers and others who do not see the autism epidemic have simply chosen not to see it. Those who deny the existence of the autism epidemic look only at one of the elephant's toes. They do not step back and see the whole elephant.

Those who deny the autism epidemic, who blame their own periodic diagnostic definition changes, diagnostic substitution, increased awareness and those imaginary autism services that make autism a must have diagnosis see only what they want to see.  They want to see a genetic explanation for autism and they refuse to consider environmental factors.  "It's gotta be genetic" and that means there is no real increase because genes don't change that quickly.

The failed premise on which the deniers excuse their repeated failure to find a gene or genes that truly cause autism symptoms or disorders is that autism is purely genetic and that the air, water, food, we consume, the toxic chemicals used in toys, clothing, jewelry, furniture and injected into pregnant women can not really have any effect on the neurological development of our children.  That reckless assumption is the kool-aid of those who deny the existence of the autism epidemic. Many parents refuse to drink that kool-aid.

The IACC pie chart above shows that genetic autism risk research receives by far the greatest share of autism risk research funding.  "Pure" genetic research receives 63% compared to 5% for environmental risk research funding.  "Epigenetic" autism risk research receives an additional 7% of autism risk research funding for a total of 70% of genetic research compared to 5% for environmental.  Gene-environment interaction research accounts for 25% of autism risk funding.   I am a humble small town lawyer and father of a severely autistic, cognitively challenged 16+ year old son.  I can not possibly be as smart as all those clever autism researchers who manipulate statistical data and call it autism research but those numbers tell me that genetic autism risk research outweighs environmental autism risk research 12 to 1.  The autism research community has produced no substantial results in its genetic autism research despite owning the autism research funding bread basket in recent decades.  No wonder many autism researchers dig in their heels and say there is no autism epidemic. An epidemic requires environmental factors and would push funding toward a more equal balance with more dollars for autism risk factor research funding and fewer dollars for their genetic studies. The negative impact that redistribution could have on their careers is obvious.

A prime example of the career influence and "its gotta be genetic" mandate on the autism research community is the example of Dr. Peter Szatmari's reaction to the CATS, California Autism Twins Study.  Dr. Joachim Hallmayer,  who was involved with the CATS study, indicated that CATS demonstrated the importance of an environmental role in autism causation with both genetic and environmental research playing significant roles.  Prominent genetic autism risk researcher Dr. Peter Szatmari, offered a different interpretation, one that I found bizarre in light of the previously existing autism emphasis on genetics alone as explaining autism:

Dr. Joachim Hallmayer:

"“I think we now understand that both genetic and environmental factors have to be taken seriously,” said Dr. Joachim Hallmayer, an associate professor of psychiatry and behavioral sciences at Stanford and the lead author of the new study, which is to be published in the November issue of Archives of General Psychiatry. ....... surprisingly, mathematical modeling suggested that only 38 percent of the cases could be attributed to genetic factors, compared with the 90 percent suggested by previous studies .... And more surprising still, shared environmental factors appeared to be at work in 58 percent of the cases" 

Dr. Peter Szatmari:

“This is a very significant study because it confirms that genetic factors are involved in the cause of the disorder but it shifts the focus to the possibility that environmental factors could also be really important."

Dr. Szatmari has it backwards. His quote indicates a desperate effort to continue the funding emphasis on genetic autism research. He clearly reverses the importance of the CATS study by indicating that it confirms a genetic role in autism causation which, to my knowledge, is not in dispute.  In reality the CATS study,  as indicated by its lead author, Dr. Hallmayer, indicates that study points out the importance of environmental factors within the context of a shared gene environment interaction model of autism causation.

The significance of the autism research genetic obsession is substantial.  As long as the cult like belief that autism is 100% genetic persists it is easy to deny the existence of the autism epidemic.  When it is acknowledge that environmental factors are involved simple denial is no longer an option.

Dr. Jon Poling is a neurologist and father of Hannah Poling, an autistic child. He   and his wife, a registered nurse and lawyer, could not be written off as  irrational, hysterical parents when they sought compensation for his child's autism symptoms under the legislated process in the US.   His comments in a March 13, 2009 opinion column of the Atlanta Journal Constitution must be heeded by government decision makers and autism researchers in the US and Canada:

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda."

We are long overdue in developing a A Research Strategy to Discover the Environmental Causes of Autism and Neurodevelopmental Disabilities as advocated by Philip J. Landrigan, Luca Lambertini and Linda S. Birnbaum in April 2012.   Such a strategy will require a redressing of the imbalance in genetic and environmental autism risk funding as advocated by Dr. Irva Hertz-Picciotto.  

The denial of an autism epidemic arises directly from, and is supported by, the   "it's gotta be genetic" belief that has dominated autism research and autism risk research funding.  

We are living in an autism epidemic and it is time to find and address the causes of that epidemic.  The time is now! 

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More Confirmation of Targeted Exclusion of Intellectually Disabled from DSM5 Autism Spectrum Disorder: But NO ONE CARES

Emily Singer has published an article at SFARI, Proposed guidelines won't miss autism cases, study says, which appears to suggest that persons who would meet DSM-IV PDD-NOS and Asperger's will "only" be reduced by approximately 10% under DSM5 criteria. The focus, as always, is on the HF end of the spectrum with no mention made of the intellectually disabled who will be excluded under the wording of mandatory criterion A of the DSM5. "We didn't see any evidence that there would be dramatically lower diagnosis of people with Asperger's or PDD-NOS," says Lord."

Catherine Lord has previously confessed that the real targets for exclusion from the DSM5's New Autism Spectrum Disorder are the intellectually disabled:

-"Catherine Lord, the director of the Institute for Brain Development at NewYork-Presbyterian Hospital, and a member of the committee overseeing the [DSM-5 autism] revisions, said that the goal was to ensure that autism was not used as a “fallback diagnosis” for children whose primary trait might be, for instance, an intellectual disability or aggression." [Bracketed terms added for context - HLD]

- Dr. Catherine Lord, as reported by NYT reporter, Amy Harmon, A Specialists’ Debate on Autism Has Many Worried Observers, New York Times, January 20, 2012

Persons with ID represented "the vast majority" of persons with autistic disorder according to CDC autism expert Dr. Yeargin-Allsopp. The DSM-IV addition of PDD-NOS and Aspergers reduced that figure to 41-44% according to recent CDC surveys.  The DSM5 exclusion under Criteria A for social communication even where  EVEN if all Critera A categories are otherwise exhibited will result in a further significant reduction in numbers of person with autism and ID. And that is the real aim of the DSM5 as Catherine Lord again confesses as reported in the Singer/SFARI article:

"Lord and her colleagues found that the DSM-5 is as sensitive as the DSM-IV, meaning it accurately identifies those who have autism. The DSM-5 criteria also have better specificity than those in the DSM-IV, meaning they can better distinguish between people who have autism and those who have other developmental disorders, the study found."

As set out above the real targets for exclusion from the autism spectrum under the DSM5 autism do-over are the intellectually disabled who are targeted by the addition of the "not accounted for by general developmental delay" disqualifying criterion in mandatory criterion A. Studies by J Matson have confirmed that substantial numbers, as many as 35.5%, of intellectually disabled who would meet DSM-IV autism criteria, will be excluded under the DSM5 criteria. 

In the DSM5 the evolution of autism into Aspergers continues with the targeting for exclusion of the intellectually disabled. But no one cares. Not Dr. Lord,  not Dr. Geraldine Dawson of Autism Speaks whose organisation has expressed concern over the possible impact of the DSM autism do-over on those at the HF end of the spectrum but not on the intellectually disabled. Not the New York Times and other major media who have worried over the possible HF exclusions.   The exclusion of some HF is possible, the exclusion of many LF intellectually disabled is certain but apparently no one cares about the intellectually disabled and the impact this exclusion will have on them.

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ABA Treatment for Autism: America Leads, Lets Catch Up Canada, Lets Get Moving Again!!

At one time the argument might have been made that Canada led North America in terms of provision of evidence based treatment for autism.  Strong parent advocacy had made gains in encouraging provincial governments in British Columbia, Alberta and New Brunswick to provide Applied Behavior Analysis treatment. Our federal government, however, refused to get involved in any meaningful way and the Harper government played politics with the National Autism Strategy. The pitiful National Autism Symposium was postponed to allow the deck to be stacked with anti-ABA advocates and to weed out ABA advocates including me.  Here in New Brunswick our successful provincial program for early intervention based on the recognized (Eric Larsson, David Celiberti) UNB-CEL Autism Intervention Training program has  been abandoned at both the early intervention and school levels in favor of  in house autism intervention "training". In New Brunswick gains made are being abandoned, in Canada federally they never started.  In the Courts our Supreme Court of Canada, apart from a human rights and statutory analysis,  opined in Auton that ABA was an "emergent" therapy, notwithstanding earlier findings by the US Surgeon General, among other prominent authorities, that ABA effectiveness as an autism treatment was backed by 30 years and hundreds of studies.

Our good neighbors to the south, however, are taking autism disorders more seriously with more states requiring insurance providers to include ABA treatment and a 2012 federal judge ruling ordered that Medicaid cover ABA treatment in Florida.  Now Autism Votes, an Autism Speaks initiative, reports that the US federal government has concluded that ABA is primarily a medical, not just educational, therapy with the result that autistic persons among the 8,000,000 US federal employees will be eligible for ABA treatment under their medical coverage: 

Autism Speaks Hails Landmark Federal Decision Calling Key Autism Therapy a ‘Medical’ Service Eligible for Insurance

NEW YORK, NY -- Autism Speaks hailed today’s announcement by the federal government, the nation’s largest employer, that Applied Behavior Analysis (ABA), the most widely used behavioral intervention used to treat autism, is a “medical” therapy that qualifies for health insurance coverage, rather than an “educational” service.

The decision by the U.S. Office of Personnel Management (OPM) involves health insurance coverage provided to the nation’s eight million federal employees, retirees, and dependents, under the Federal Employees Health Benefits (FEHB) Program. It could have even more far-reaching implications on the health insurance benefits provided all Americans living with autism, as it will be much harder for insurance companies to continue denying coverage for ABA treatment.

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“The OPM decision directly contradicts a long-standing insurance industry claim that ABA therapy is not ‘medical,’ but rather ‘educational’ - provided by the schools at taxpayer expense,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now, tens of thousands of families will have better access to more affordable, critical ABA treatment.” 

The decision was rendered in the form of guidance to insurers who participate in the FEHB Program for policies that will be renewed or issued starting in 2013. The OPM decision does not require the insurers to cover ABA, but rather allows them to offer the coverage as it does many other medical treatments. The guidance reads: “The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”

Autism Speaks has fought to provide families insurance coverage for ABA therapy through state-regulated plans, self-funded group plans that are regulated under federal law, the FEHB Program, and TRICARE for military families. In each instance, opposition to covering ABA treatment has been based in large part on the claim that ABA is educational, rather than medical."

In Canada our provincial government health care providers defined autism intervention as a social service rather than a medical necessity helping it avoid responsibility for autism coverage in the Courts. Canada still has an autism advocacy movement at work trying to right the Canadian autism ship which has floundered on the rocks of indifference.  Medicare for Autism Now! has been fighting hard to encourage our disinterested federal government to take autism seriously, meet with the provinces and get effective ABA treatment covered for autism under all provincial health care legislation.  

Wake up Canada! We are not falling behind in autism treatment we have already fallen way, way behind.  Get behind Medicare for Autism Now! and provide your support, get involved.  When we wave the Canadian flag this July 1st lets remember our autistic children in need of effective ABA treatment. If our American friends can wake up and address the autism crisis that confronts us all surely we Canadians can do so too,  EH?

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"Thinking" Persons Guide to Autism Issues Proclamation Declaring Autism Speaks Does Not Benefit Autistic People

Some of the people referenced in this post are affiliated with Autism Speaks. TPGA does not consider Autism Speaks an organization that benefits autistic people. -SR

I am not sure what constitutes "Thinking"  at the "Thinking" Persons Guide to Autism. The above quote from "SR", Shannon Des Roches Rosa, precedes a blog comment by Carol Greenburg, a TPGA sponsored blogger at the recent IMFAR 2012 conference in Toronto. I attended IMFAR courtesy of Autism Speaks and found the conference to be an amazing experience. (Although attending courtesy of Autism Speaks my attendance still cost me considerably as I lost 3 days out of my legal practice and time I could have spent with my son Conor). 


I am not totally surprised that SR would make a statement of that nature about Autism Speaks. This is after all the same individual who used tragedy to promote TPGA ideology and products: 

"Vanquish the Forces of Autism Evil! Declare Your #AutismPride!

 When I hear about yet another dangerously misinformed autism parent killing their child because of  autism fears, I literally fall to my knees with grief. What kind of world do we live in, if people can't bear. ........ I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.

It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics. ........this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week)."

I notice that Autism Speaks wasn't mentioned on SR's "blame" list when she wrote the above comment in response to the tragedy of a mother taking her autistic child's life. Prosecutor's in that case declined to prosecute the woman because they doubted they could prove her sanity at the time she killed her child.  But that didn't stop the self referenced "squidalicious" Shannon DRR from launching her bizarre rant against parents and others who view their child's autism disorder as a ......... disorder.

Autism Speaks deserves to be criticized, like everyone else, on occasion. My oldest non-autistic son finds ample, and I mean ample, reason to criticize me and I actually get a kick out of it when he does.  As the father of a severely autistic son with profound developmental delays I am not sure at times whether all those "thinkers" at the TPGA actually realize that, notwithstanding all their feel good buzzing about autism as an alternative way of thinking etc.,  autism is still a ..... disorder.   I am a bit surprised that SR would identify Autism Speaks as one of the forces of evil and I am not sure why but I assume it is because AS helps fund cause oriented research which may some day result in treatments and cures for autism disorders.

My own frustrations with Autism Speaks arise from their attempts to be all things to all people and in the process downplaying some of the harsher realities of those most severely affected by autism disorders.   In particular I believe that Autism Speaks glosses over the strong connections between Autistic Disorder and intellectual disability.   Autism Speaks has, however, been a key factor in the research area in particular; both genetics and environmental autism research, although I would like to see more emphasis on the environmental research. While I disagree with some of their decisions and directions overall I believe Autism Speaks is a positive force that does benefit autistic people, particularly in raising funds for autism research. Of course as a parent of a son with severe challenges arising from his autistic disorder, and as an unthinking person, my opinion probably doesn't count for much as a guide to autism issues.


I guess it is just par for the course that if you try to please everyone you risk pleasing no one and certainly not someone who identifies so many parents and parent driven organizations as "forces of evil".    I will have to start reading TPGA more closely now, not in hopes of learning anything constructive about autism disorders, but for the amusement value of seeing from day to day who SR and the TPGA have proclaimed to be not acting for the benefit of autistic people.   

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