Intellectual Dishonesty: Autism Disorders Misrepresentation Via High Functioning Autism Only Research

In the picture above SFARI presents news of two "autism" studies which purport to find that brains of persons with "autism" are overly connected as compared to those in control groups. In fact both studies intentionally and expressly excluded persons with autism and intellectual disability, approximately 50% of those with autism spectrum disorders according to the World Health Organization, from their studies. Both the studies and the SFARI news commentary describe the results as descriptive of "autism" brains rather than "high functioning autism" brains.  The studies, and the SFARI news commentary, continue the misrepresentation of high functioning autism as being representative of  all autism disorders.

In a 2008 posting on this site, Autism's Outcasts, I commented on and questioned the exclusion of low functioning autistics, those with intellectual disabilities, from media representations of autism disorders and from "autism" research. Unfortunately, these trends have continued unabated.  While the mainstream media is driven in this direction by both ignorance and profit generating high functioning representations of autism in shows such as the Big Bang Theory it is frightening to see researchers, and autism research organizations like SFARI, cling routinely to the premise that "autism research" should focus on high functioning autism exclusive of intellectual disability, pure autism,  as questioned by Giacomo Vivanti and his colleagues in Intellectual Development in Autism Spectrum Disorders: New Insights from Longitudinal Studies:

"we argue that the practice of excluding children with ID in ASD research to study “pure autism unconfounded by ID” is ill considered, just as studying the risk of cardiovascular events in individuals who are slightly overweight, or who have mild presentation of hypertension, would not be informative on the most relevant aspects affecting the outcomes of individuals with those conditions."

In the SFARI article linked above,  Autism brains are overly connected, studies find, Emily Anthes refers to two recent autism studies which she argues support the belief in the article title that "autism brains" are overly connected:

"Two of the new studies looked at resting brains and controlled for head movement. Both found that the brains of children and teens with autism show overconnectivity. In the first, published 14 November in Cell Reports, Müller and his colleagues used resting-state functional magnetic resonance imaging (fMRI) to assess short-range brain connectivity in 29 high-functioning children and adolescents with autism and 29 controls. All participants were between the ages of 8 and 18, with intelligence quotients (IQs) above 70. .......... A second study, published in the same issue of Cell Reports, turned up even more extensive evidence of overconnectivity in young children, who are typically neglected in connectivity research2. The researchers assembled three independent groups of children: 40 in California, 40 in Washington, D.C. and 30 in New York, all between the ages of 7 and 13. Each group had equal numbers of children with autism — all with IQs above 70 — and typically developing controls.”

These two studies are presented by the SFARI commentary as representative of autism generally even though persons with autism and intellectual disability were intentionally excluded from both studies.  The studies, and SFARI, also believe without any foundation that there is such as thing as "an  autism brain" and that such "autism brains" are characterized by overconnectivity.  It is, in my humble opinion, intellectually dishonest to state that there is one model of autism brain representative of all persons with autism disorders and that such brains can be described and understood by excluding from studies the 50% of persons with autism disorders, as estimated by the World Health Organization, who also suffer from  an intellectual disability.

There are consequences to the exclusion of persons with autism and intellectual disability from "autism" studies as noted by Vivanti and his colleagues:

"As the poor outcomes associated with the presence of ID in ASD result in large human and societal costs, it is important that future research systematically investigate the risk and protective factors associated with the development of ID in ASD. Indeed, excluding individuals with ID from research in ASD only renders more difficult the ultimate goal of fostering positive outcomes for individuals with ASD. "

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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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Autism Research Progress To Date In Two Words: Lovaas, ABA

Research to date benefiting persons suffering from autism disorders can be summed up in two words: Lovaas, ABA. The work done by Dr. Ivar Lovaas has been applied successfully for decades as reported by the US Surgeon General's office (1999) and by the American Academy of Pediatrics (2007), reaffirmed (2010):

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

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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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Senator Jim Munson Says Ottawa Has Done Little to Address Canada's Autism Crisis

Laverne Stewart of Fredericton's Daily Gleaner reports (September 24, 2013) that National autism advocate Senator  Jim Munson, shown left in his Parliament of Canada photo,  is frustrated, that after years of working to secure a national autism disorder spectrum strategy, Munson said the federal government has done little to address Canada's national autism crisis:

"In a phone interview with The Daily Gleaner, he said the federal government has started to look at what approach each province is taking to address autism.

“They’re different all across the county,” he said.

Munson said people across Canada need to keep pushing the federal and provincial governments for a better approach to addressing the needs of autistic individuals and their families.

“Autism has no borders. It doesn’t. Not in this country or any other country in the world. We live in this world where we say it is a provincial responsibility. It is not. It’s Canada’s responsibility … It is scandalous. We’re in crisis.”"

Senator Munson, is widely respect for his work on behalf of autism disorders  and he has done much over the past 10 years to keep autism on the national agenda, a major challenge since most of that time has seen the Harper government act in opposition to any effective National Autism Strategy.  Even with an Edmonton MP, Mike Lake,  who is clearly a  dedicated father to his own son with an autism disorder the government of  Harper and Lake have taken absolutely NO action to help autistic Canadians in need of effective early intervention, effective learning intervention for school or modern residential care , with autism trained staff, for the many adult Canadians with severe autism disorders who will require such care.

Senator Munson is very diplomatic.   With respect,  I do not agree that Ottawa has done little to address Canada's autism crisis.  The Harper government has in fact worsened that crisis with it's official opposition to a National Autism Strategy, an opposition so ferocious that even Edmonton MP and dedicated Autism Dad Mike Lake voted against Shawn Murphy's private member's motion that would have ensured access to effective, evidence based intervention for autistic children under our national health care plan.   The Harper government's opposition to an effective national autism strategy is so intense that it even cancelled a scheduled national autism strategy conference scheduled for Ottawa several years ago at which community autism representatives were expected to attend.  The event was rescheduled and the "community" autism representatives were hand picked to exclude any prominent autism advocates for a National Autism Strategy.  

Senator Munson has had the interests of autistic children and adults at heart for many years. Unfortunately for autistic children and adults, like my son, the Senator's  frustration is doomed to continue as long as Stephen Harper rules in Ottawa. 

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October is Autism Awareness Month in Canada, Canadian Government Still Doing Nothing Eh Mike Lake?

October is Autism Awareness Month in Canada.  You would never know it based on the contribution made by Canada's federal government which has taken a strict, division of constitutional jurisdiction, approach to autism disorders in Canada.  In other words it has said that addressing Canada's growing National Autism Crisis is not a concern of the federal government. 


Harper Conservative MP Mike Lake, who I have met in person and spoken with by phone, and who seems like a genuinely nice guy, speaks lovingly of his autistic son in Parliament with a few words recognizing  World Autism Awareness Day on April 2nd and that's pretty well it.  On Wednesday, February 21, 2007 Mr. Lake himself voted against Bill C-304, the private member's motion brought by Charlottetown Liberal MP Shawn Murphy,  an Act that would have amended the Canada Health Act and provided for the development of a national strategy for the treatment of autism.  

If non Canadians want an idea of how little is done by our federal government to help Canadians and their families suffering from autism disorders they need only refer to the October 2011 statement of former federal Minister of Health Leona Aglukkaq:

Autism Awareness Month

October, 2011

Autistic disorders are heart-breaking conditions because they can cause developmental disabilities in very young children that may affect them for the rest of their lives. These disorders are typically diagnosed in children before they reach their fifth birthday. 

Autistic disorders have a broad range of symptoms. They can be mild to severe and tend to result in problems with social interaction, communication and behaviour. In Canada, it is estimated that Autism Spectrum Disorders (ASD) affect as many as 1 in every 150 children, as well as the lives of their families, friends and caregivers.

Important advances have been made in the way we care for and educate Canadians living with ASDs. Yet more research is needed to learn what causes these disorders and to help develop better treatments and interventions so that those afflicted with ASDs can live more normal lives.

As Minister of Health, I am pleased that the Government of Canada, in cooperation with our colleagues in the provinces and territories, is setting up a national surveillance system to establish reliable data to:  

• determine how common ASDs are and how rates differ across Canada;
• describe the population of Canadians living with ASDs; and
• understand changes in the number of children being diagnosed over time.

This information will help in developing programs to serve the needs of Canadians living with ASDs and their families and caregivers. In addition, the Government has invested approximately $40 million on autism-related research since 2000.

In closing, I want to congratulate the Canadian Autism Spectrum Disorders Alliance and Autism Speaks Canada for their dedicated work in this area.

Leona Aglukkaq

Minister of Health

Government of Canada

Prevalence data, clearly based on existing US information of that time,  is about the extent of the federal government's contribution to autism awareness in Canada. Interestingly neither former Minister Aglukkaq, nor autism dad Mike Lake, mention the parents who advocated with determination in provinces across Canada for early evidence based intervention for autistic children.  Nor do they mention federal political figures who have in the past made great efforts to bring a real National Autism Strategy to Canada including Fredericton New Brunswick's recently deceased Andy Scott, Peter Stoffer of Nova Scotia, Shawn Murphy of PEI, and Senator Jim Munson.

Canada has a national health care plan which does provide basic health care for Canadians.  It is not perfect. Anyone can legitimately cite personal grievances with the system but it is a system that does not exist in the neighboring US.  For that national health care plan developed a half century ago this Canadian father is very thankful.  It would not exist if the  Harper government's constitutional excuses had prevailed during that era. It does  not exist today for the purpose of addressing the  autism specific needs of Canadians suffering from autism spectrum disorders.

During Autism Awareness Month the Harper government, and presumably Mike Lake, will make a statement or two about autism and earn some political brownie points.  If past practice holds firm they will announce no significant federal government efforts to help address Canada's National Autism Crisis.  

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My Reply to Non Autism Expert Dr. David H. Gorski Also Known as ORAC

Dr. David H. Gorski, who is NOT an autism expert, somewhat ironically,

  attacks parents, professionals and journalists who disagree with

his autism disorders opinions as "quacks"

Dear Dr. David H. Gorski.

Thank you for acknowledging your total lack of autism expertise.  For the benefit of  readers unfamiliar with your "style:" I did not make the statements set out in quotation marks by you,  the learned Dr. Gorski which you altered to suit your (silly) purposes.  The statements in quotation marks are silly distortions, falsifications, of what I actually said in my blog comment on the Alex Spourdalakis case:

1. Orac

September 7, 2013

Shorter Harold (from that link):

“I’m awesome and know autism. I even have a Queen Elizabeth II Diamond Jubilee Medal to prove it! Emily Willingham doesn’t and is exploiting the Alex Spourdalakis murder for evil intent. Oh, and it will be decided by the court, not bloggers.”

That last statement is what I refer to as a “Well, duh!” statement and an attack on a straw man. No one is claiming that the Spourdalakis case won’t be decided by the courts.

Add to that in the comments here:

“You can’t comment on the Alex Spourdalakis case unless you’re an expert in autism or have personal experience with autism. If you do comment your are proclaiming yourself falsely to be such an expert.!

Seriously, though, I share Kreboizen’s curiosity about Mr. Doherty’s stance towards autism biomed.

BTW, I added a couple of fresh quotes about the Spourdalakis case to this post, one from John Stone and one from Kim Stagliano. They are doozies, so much so that I wanted to feature them somewhere. I didn’t think they deserved their own post, however.

2.     In comment #50 on your Respectful Insolence blog rant Is Sharyl Attkisson feeling the heat over her irresponsible reporting of the Alex Spourdalakis case?   I asked a simple question in respect of the trial of Alex Spourdalakis case:

Anyone here know if Dr. David H. Gorski will be appearing in the Court proceedings to give testimony as an autism disorder expert?

You moderated (changed)  my comment to change the name in my question from Dr. David H. Gorski, your actual name, to  Orac, the name  under which you attack and denigrate autism parents, professionals,  journalists and anyone else who questions your opinions.

Harold L Doherty

Canada

September 7, 2013

Anyone here know if Orac will be appearing in the Court proceedings to give testimony as an autism disorder expert

Why you ran away from this simple truth is not clear since everyone knows that the Disrespectful AND Insolent blogger Orac is actually Dr. Davd H. Gorski.

As for my blog reference to my QE II Diamond Jubilee medal it  is simply a recognition that my involvement with autism, apart from my son's own severe autism disorder has also included 15 years of successful advocacy for all children and students with autism in New Brunswick, Canada to receive evidence based  (as determined by real autism experts like those at the office of the US Surgeon General, the American Academy of Pediatrics and the Association for Science in Autism Treatment) early intervention and school instruction and support services.   At all times in any autism advocacy in which I was involved I have tried to follow such expertise and the expertise and guidance of local academics and clinicians, who unlike you Dr. Gorski, have considerable expertise in autism disorder issues.

Neither Ms. Emily Willingham nor Dr. David H. Gorski have published any references to indicate they have done any advocacy for children and students with autism disorders or that they have any academic or real life involvement with severe autism disorders and the impacts they have on parents and family members.  Instead they choose to attack parents of children with severe autism disorders about whose challenges both Willingham and Gorski are totally ignorant and ill informed.  

To address Dr. Gorski’s perpetual issue, and mode of dismissing any autism parent on any issue with which he disagrees, I support public vaccination programs and my family, including myself,  receive all vaccinations recommended by our family doctor. This fall I will receive a flu vaccine as recommended by my treating respiratory specialist after I was hospitalized this past spring with a respiratory infection coupled with an aggravated asthma attack. I follow my doctors' recommendations.   

Although I am not convinced of the role of vaccines (in causing autism in some cases) I do recognize that vaccines, like any medical treatment, can have adverse side effects.  This summer my younger son who also suffers from epileptic seizures suffered an adverse reaction to his anti-seizure medication of that time Lamictal/Lamotrogine.  ( For Dr. Gorski's benefit a high percentage of persons with autism also suffer from epileptic seizures, particularly when, like my son, they also have an intellectual disability). The conclusion that my son’s life threatening adverse reaction was caused by his medication rather than an infection was reached, after direct observation, testing and successful treatment  by the ICU team that saved his life, not by me.

Even the US Vaccine Court has recognized that vaccines can have harmful side effects some of which appear to relate to autism symptoms. (Dr. Gorski can challenge Dr. Jon Poling to a public debate  on that issue if he wishes to show off his all consuming  knowledge of science, vaccines and autism disorders.  No I won’t hold my breath waiting for a Gorski-Poling match  I don't  think Dr. Gorski has the parts for that).   What Dr. Gorski who is NOT an autism expert may not understand is that autism as a singular disorder is losing standing the community of autism experts who view autism more as a grouping of autism disorders or symptoms.  Arguably this paradigm shift will call into question some of the concessions made by the US in the Vaccine Court cases where autism like symptoms were acknowledged but not “autism”.

Dr. Gorski's venomous attacks on parents, professionals and journalists who do not share his views have not resulted, as far as I am aware, in an increase in public vaccination rates in the US. Given that fact it is difficult to see why he engages in such childish, unprofessional behavior other than one reason:  he enjoys making, he takes pleasure in making,  such attacks. There is only one person who has degraded Gorski's credibility to speak on autism issues and that person is "Dr" David H. Gorski himself. 

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2 Harmful Acts: Autism Hate Letter And CHEO Removing Autistic Child With GDD From Early Intervention Program

The notorious autism hate letter that targeted an Ontario family and their autistic child has sparked horror and outrage around the world.  As the father of a 17 year old son with severe autistic disorder, profound developmental delays and tonic-clonic (grand mal) seizures I recoiled when I heard the news of this hateful act and I believe I have some understanding of  how the family felt and hope they are handling it as well as possible.  I suspect that the person or persons responsible for this act are now fearful that they may become publicly identified. Why the person felt it necessary to commit such an act is a mystery to me. I am happy to see that people around the world have responded with condemnation of the letter.

At the same time I am disappointed with the lack of reaction to the decision by the Children's Hospital of Eastern Ontario to write off an autistic child with "global developmental delay" by removing him from an early intervention program.  Call it what you want, justify it as you please, but the decision of the CHEO will have a real impact on the child with severe challenges by removing him at a critically important point in his life from the only solidly evidence based intervention for persons with autism and intellectual disability, "global" or not.  

Many have speculated about the mental health status of the author of the notorious autism hate letter. The harmful CHEO decision though was made by people whose mental health status is not in doubt, people who know what harm they have done to a child very much in need of their help, people who obviously lack compassion and concern for the well being of the autistic child with "global developmental delay" that they do not want darkening the "outcomes" profile, or assessments,  of the services they offer. 

A hate letter and a refusal to help.  Both are harmful. Neither can be justified.

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Children's Hospital of Eastern Ontario (CHEO) Writes Off Child With Autism AND Global Developmental Delay (Intellectual Disability)

CHEO: No Teddy Bears & No Autism Program 

for Severely Challenged Children 

The Children's Hospital of Eastern Ontario has been added as a respondent in a human rights proceeding, and accused of discrimination, after it kicked an autistic child with global developmental delay, severe intellectual disability, out of an early intervention program.

In an Ottawa Citizen article Don Butler reported:

"CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability. “Our clinicians have to make difficult decisions about the appropriate care for each child, and they always strive to base their decisions on the child’s unique needs and best interests.” The only reason a child would be discharged from the intensive behavioural intervention program, the hospital said, “is if the treatment were not working for him or her.”

The CHEO did not indicate what "the appropriate care" would be for a child with autism and global developmental delay OTHER THAN early intervention behavioural intervention.  It would be nice if the health "care" providers of the CHEO could indicate what other care was "appropriate" for this or any other child with autism and severe intellectual disability.

In the absence of any indication as to what other care would be of assistance to a child with autism and GDD, in lieu of early intervention,  the only reasonable conclusion is that the alleged health care providers of the CHEO have simply written such children off as unworthy of assistance.  

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Autism Severity: Verbal Communication Doesn't Count? Crows Say Otherwise!

Photos by Harold L Doherty

One of the more irrational features in some autism discussions is the claim that being non verbal is not a significant indicator of autism severity.  Anyone who thinks that  verbal communication is not a significant factor in daily functioning is fooling themselves.   Communication is important for humans as it is for birds.  Crows are often reputed to be the smartest bird species and YouTube abounds with clever activities of crows. Anyone who has walked in areas populated by these very smart birds has heard the loud oral communication that goes on between these marvelous, high functioning creatures.  

As with crows, so too with people, oral communication is important in daily functioning and the absence of oral communication abilities is a serious deficit in daily functioning.  My son has severe autistic disorder and limited communication.  His lack of communication ability seriously limits his everyday life.

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The Damaging Impact Of Seizures On Individuals With Autism

Seizures and epilepsy are serious issues for persons with autism and their families as we learned first hand in our home on November 17, 2012 when Conor suffered a very serious seizure. Following is a publicity release issued in respect of Silently Seizing and author Caren Haines, RN (Haines also received input from Nancy Minshew MD) which I am pleased to publish on this site.  I encourage everyone to read this release and consider using any media or social media you can to further its distribution and awareness of seizure issues for persons with autism disorders.

The Damaging Impact Of Seizures On Individuals With Autism

Newark Valley, NY, February 15, 2013 – Many of us know someone whose family is dealing with autism; once considered rare, now 1 in 88 children in this country are diagnosed with an Autism Spectrum Disorder (ASD).

Silently Seizing:  Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders (AAPC Publishing) by Caren Haines, RN, and valuable input by Nancy Minshew, MD, deals with the overwhelming challenge for those living with silent seizures. Many are confronted by anger and falsely accused of disorderly conduct, indecent exposure and drug abuse; while some are even unfairly arrested because the bizarre actions exhibited during a seizure have led to frequent misdiagnosis, medical mismanagement and, in the worst case, commitment to a mental institution.

Because they are difficult to diagnose, or due to a lack of awareness and understanding, as many as 30% of all children and young adults with ASD may have undiagnosed seizure disorders. Silently Seizing is a breakthrough book that explores what most doctors won't tell you – that often the symptoms of autism are caused by seizures, undetectable with standard diagnostic tools.

At age 2, the author’s son was diagnosed with autism. By the time he was 12, his diagnosis didn't account for his uncontrollable aggression, the acrid smells that lingered in his mind and the odd voices that screamed at him from inside his head. By the time he was 18, his out-of-control behavior mirrored a mood disorder with psychotic features. Silently Seizing begins with a close-up look at this family's journey and examines a disorder that cannot always be identified in a clinical setting.

As a registered nurse, Caren Haines relied on her training to help her decipher her now 24-year-old autistic son’s perplexing behaviors. Based on knowledge gained from years of intensive research and information from top researchers in the field of autism, she is helping families become free from the debilitating symptoms of silent seizures and psychosis.

Haines’ says, “Intersecting at two medical subspecialties, neurology and psychiatry, the child who has autism and partial seizures is at a serious disadvantage. By inadvertently allowing children's brains to “silently seize,” we are robbing them of their ability to function normally. Untreated, these seizures can predispose children to develop behavioral disturbances, such as self-injury, aggression and psychosis, which are seen in many cases of autism. If they are treated early with anti-seizure medications, many children show amazing gains in expressive language and comprehension. More importantly, many children lose their diagnosis of autism.”

Backed by up-to-the-minute research, Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders is a must-read book that includes sections describing autism, the seizure-autism connection, tips for diagnosing and treating seizures, as well as how to better understand children's behavior. It acts as a virtual guide to help parents navigate through this complex and mystifying disease. For more information, please visit: www.bit.ly/Rb2WBW.

Caren Haines is also co-author of Georgia, The Flying Dog, a children’s book that explores the concept of unconditional love and acceptance of our differences.

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Established in 1999, the mission of AAPC Publishing is to be the first source for practical solutions related to autism spectrum and related disorders. AAPC Publishing is an independent publisher, targeting professionals and parents alike. AAPC Publishing strives to offer publications at affordable prices so that important resources are available to anyone with an interest in the autism spectrum.

MEDIA APPEARANCE:

Caren Haines, AAS Nursing, R.N. - Presentation and Book Signing Event at the 2013 Southeastern “Across the Spectrum” Conference - Autism/Asperger Conference and Expo

When:  February 28th, 2013 - Ms. Haines' presentation is from 11:00 am – 12:15 pm; immediately following she will be at the AAPC booth signing books.

Where: Gwinnett Convention Center - www.gwinnettcenter.com
               6400 Sugarloaf Parkway

               Duluth, Georgia   30097

ADDITIONAL INFORMATION: Hosted by: Georgia Autism Conferences and Exceptional Ed Events.  Georgia Autism Conferences strives to meet the needs of the Georgia Autism community by providing quality seminars and conferences throughout the state on topics related to Autism Spectrum Disorders.

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Questioning Answers - An Excellent Autism Research Blog

My favorite blog dedicated to autism research is Questioning Answers, by researcher Paul Whiteley,  and I  recommend it for anyone interested in the subject.   Whiteley  presents autism research information in a manner that can be digested by this humble autism dad and is not condescending.  The content is broad, balanced and clear in its coverage of autism research subjects.  Whiteley displays no obvious bias,  (not obvious to me anyway),  in his comments which are always informative.  The QA blog regularly focuses on subjects that will be of interest to parents such as yesterday's Antipsychotics, autism and core symptoms. 

Whiteley describes his blog and his interest in autism and other research on his blog site profile:

"I have been involved in autism research for more years than I care to remember. The Questioning Answers blog is a place to describe and discuss various research into autism spectrum and related conditions. My Gutness Gracious Me blog is for discussions on various gastrointestinal research. I make no recommendations, I am not giving any medical advice, I am not formulating any specific opinions and do not want to get into any ethical, political or religious debates. I am not trying to change anyone's opinions, views, beliefs or anything else. These are purely blogs about science and research in autism and a few other interesting things. Any posts I make are my own opinions and not reflective of any organisation I am affiliated to. Keep in mind that science deals with probabilities not absolutes."

I follow Questioning Answers, read it regularly, and follow Whiteley's Twitter updates @QuestAnswers as well.  In my opinion Whiteley's blog profile self description is accurate and honest.  On Blogger and on Twitter Questioning Answers is a valuable  resource and I highly recommend it for anyone interested in autism disorder research.

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FDA Approved Stem Cell Autism Treatment Preliminary Study

I was surprised to see that a preliminary study of stem cell treatment of autism disorders is proceeding with FDA approval in the United States.  Stem Cells as possible treatments for autism have been mentioned for some time but have been subjected to disparaging commentary for several reasons including the usual anti cure attacks from Neurodiversity self interest groups. To see a preliminary study actually examining a possible source of treatment and cure for autism disorders is startling.  To see such a preliminary study receive FDA approval and thereby receive some protection from the anti cure autism extremists and self anointed protectors of the one true science at Respectful Insolence and similar sites is almost shocking.

Philly.com carries a HealthDay article by Mary Brophy Marcus, Could Stem Cells Treat Autism? Newly Approved Study May Tell  which indicates that: 

"Thirty children with the disorder, aged 2 to 7, will receive injections of their own stem cells from umbilical cord blood banked by their parents after their births. All of the cord blood comes from the Cord Blood Registry, the world's largest stem cell bank. Scientists at Sutter Neuroscience Institute, in Sacramento, Calif., said the placebo-controlled study will evaluate whether the stem cell therapy helps improve language and behavior in the youngsters."

The article  is careful not to over hype the study emphasizing that although it is a well designed study it is still a preliminary study which will in effect help decide whether further such studies concerning stem cell treatment of autism are warranted and that it is very early in this process.  The article also points out that there are mixed views  with some researchers being skeptical about the value of stem cells in treating autism. 

The cautions expressed are  helpful to my mind.  Those who oppose research that might lead to knowledge of autism causation, or to treatments and cures will seize on any excuse to attack and derail such research.  The disciplined, professional approach will help ward off such attacks.  In the end we should ALL want proper procedures, proper protocols to be followed to ensure that ANY results, positive, negative or neutral to anyone's perspective can be relied upon.

Personally, I am very happy that there is actual  research being done, in proper fashion, by credible professionals, under appropriate authorization aimed at finding treatments and cures for autism disorders. After years of  pointless, meandering,  autism research it is encouraging to see researchers who still live in the real world, who do not view parents as the enemy, and who realize that despite the protests of a few very high functioning persons  autism disorders are very debilitating, limiting and even dangerous for many who suffer from them.  Autism disorders require treatment as advocated by parents seeking treatment and cure for their children and for those who suffer from them and want treatment and cure for themselves.  Let the research be done and be done properly. 

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All Autism Meltdowns Are Not Panic Attacks

On Twitter in the past 24 hours the questionably named Thinking Persons Guide to Autism does what it often does: distributing unproven, non evidence based, opinions as representing all there is to know about autism.

On this occasion the TPGA Re-Tweeted one person's opinion about meltdowns; offering the less than carefully thought out over simplification that autistic meltdown are panic attacks not tantrums. The problem with this statement is that it oversimplifies what is often, at least for my severely autistic son, a very complex behavior. With the concluding remark the "Thinking" Persons Guide To Autism then encourages others to RT this oversimplified, incorrect notion that all meltdowns are  panic attacks:

"TP Guide to Autism ‏@thinkingautism

RT .....  Autistic meltdowns are panic attacks, not tantrums. Pass it on. http://tmblr.co/ZufSAyU29DkK #autism"

My 16 year old son is severely autistic. He is also assessed with profound developmental delays. His meltdown behaviors are complex at any time. His meltdowns are not all triggered by the same events. Some appear to be frustration based in terms of the inability to do ... or to stop doing something when he obsesses with something like a Little Einstein video. Some times his meltdowns appear to be triggered by internal physical discomfort of various sorts. Some times they appear to be related to seizure activity. 

I am talking at this point only about my own severely autistic son not about other persons with autism disorders whether they be severely autistic with limited communication skills or whether they are High Functioning Neurodiversity activists promoting their perception of their autism condition as the universal reality for all persons with autism disorders.

I can not, and do not,  say that ALL persons with autism disorders experience meltdowns in the same way or for the same reasons as my son.  What I do say is that the person involved with the original tweet and the Thinking Persons Guide To Autism can not say that my son's meltdowns are always panic attacks.  

My son's  complex meltdown behaviors are just not that simple..... pass THAT on please!

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Adults with Autism Disorders Not on the Political Agenda In Nova Scotia or New Brunswick

Conor at Black Rock on the Minas Basin, the eastern extremity of the Bay of Fundy, shared by New Brunswick and Nova Scotia, and home of the highest tides in the world.  NB and NS also share a lack of commitment to helping autistic, particularly severely autistic,  youth and adults.

Nova Scotia is receiving some recognition for improvement in services for children with autism disorders on the one hand but is also criticized for leaving adults and older children with autism behind.  The situation is not unique to Nova Scotia.  

New Brunswick made significant gains in provision of preschool and school services for autistic children during the Lord and Graham administrations although those services are now slipping away under the Alward-Carr-Porter administration. Autistic youth and adults, however, have not made any substantial gains at all during the Lord, Graham or Alward terms. No progress has been made in developing a modern facility with professionally trained staff for the most severely affected by autism disorders.  The group homes are staffed with personnel who lack training in autism.  

The story is similar in Nova Scotia where adults with autism, like those in New Brunswick, are simply dumped in psychiatric facilities with populations with a variety of mental health disorders:

""I'm happy that the people coming up have the resources I didn't have," said Barbara Gillis, whose 21-year-old son, Paul, is currently institutionalized with people suffering from a range of problems that don't include autism. Gillis, a single mother from Halifax, said she's been fighting to get her son into a properly supported environment to no avail. "What about the young adults that have already come up and didn't have these resources? There's a whole population out there with nothing."

Cynthia Carroll, executive director of Autism Nova Scotia, said there is currently no transition support for young adults leaving high school and there is a "crisis level" lack of residential support for adults as they get older. "They really need to start looking at services and supports for adults right across all government departments," said Carroll.

Health Minister David Wilson said with current budget restraints the province feels it can do more by targeting autistic children at an earlier age. However, he conceded more has to be done to improve support programs for older children and adults living with autism. "There's still work to be done," Wilson said. "We've got to continue to look at ways to support individuals young and old who have autism.

The only promises from politicians that count however are firm and clear  commitments to take specific actions within an identified time frame.  The Nova Scotia Health Minister's rhetoric about adult autism support amounts to "not today but maybe tomorrow".   You don't have to be a political scientist  to know the value of such promises. 

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