Utah Study Misrepresents Autism Disorders, Report Includes Only Top 10% Highest Functioning Autistic Study Subjects

Wow, talk about your blatant misrepresentation of autism disorders.  A Utah study has followed the lives of 400 persons with autism since the 1980's in an effort to understand their quality of life as adults.  Except that well ... the study only reported on the top 40, or top 10% highest functioning members of the study group:

"Last year’s study – written by researchers at the U., Carmen B. Pingree Center for Children with Autism in Salt Lake City, McGill University in Canada, Los Angeles Medical School and Yale University School of Medicine – offered a rare glimpse into the lives of adults with autism, an understudied population. But it was limited in scope to 41 of the higher functioning participants from the original 1980s study."

Apart from ignoring those autistic subjects who were lower functioning the study only mentions that 20 of the subjects are now dead.  20 seems to me to be a fairly signficant number and a full study of the causes of their deaths as they relate to their autism disorders might be a subject worth elaborating on.  Of course those 20 might have been lower functioning persons with actual, honest to goodness Autistic Disorder and Intellectual Disability not the "good" autistics featured in movies and major media interviews.

Sadly there is nothing unique about the Utah based study.  When it comes to the autism "spectrum" academics often join hands with the mainstream media, and with Hollywood,  to portray the so called spectrum as composed entirely of higher functioning persons with autism.

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What Will the Public Know About Autism After the 2011 Ride Across Canada for Autism Spectrum Disorder?

The Ride Across Canada For Autism Spectrum Disorder, 2011  has elicited support from a number of prominent autism organizations in Canada and the United States including, as listed by web site info on the Ride Across Canada Facebook page,  autismcanada.org, autismsocietycanada.ca, autismontario.com, racing4autism.ca, autism-society.org and generationrescue.org.  It is also endorsed by some very strong and credible autism advocates that I have either met personally or via the internet, people whom I genuinely respect and appreciate for their hard work and commitment to helping  people with autism disorders in Canada and around the world.  This looks like an outstanding project being undertaken to raise autism awareness and I wish every success for it but, because we are talking about autism,  imbued as it is with so many controversies, I ask what kind of awareness will be raised and what specific goals will be targeted with this effort? 

One of the Facebook supporters for the Ride Across Canada for Autism Spectrum Disorders is Jonathan Howard who knows a thing or two about crossing Canada for autism having done exactly that when he ran across Canada.  I met Jonathan when he stopped in Fredericton and he is an outstanding young gentleman who has given much for others and will undoubtedly continue to be a major contributor, helping other people, for many years to come.   I have no doubt that the forthcoming Ride for ASD's will make more people hear of autism as they did with Jonathan's run but what exactly will they learn about autism and what needs of persons with autism disorders will be brought closer to completion anywhere in Canada by this project?

 

My comments are not meant in anyway as a criticism. I commend organizer Scott Carpenter and I genuinely have a good feeling about this effort which has attracted strong support out of the gate.  My comments are meant to ask what specifically will be said about autism disorders with this great effort? What will Canadians learn about autism realities beyond the feel good tripe routinely circulated in the mainstream media about autistic savants and autism successes stories exemplified by the incredible Temple Grandin?

 

The title of the project is a good start.  I no longer believe that there is one single autism disorder.  I believe that there are many different autism disorders.  Still for the public to learn that autism is a disorder, or a number of disorders,  is a very good start and will help break through the feel good nonsense of those who would tell us that autism is a joy and a blessing that we should embrace. 

It will be important for the public to hear the whole truth about autism spectrum disorders.   While there are indeed some very high functioning autistic persons who have been very successful and contributed much to society there are many  persons with low functioning autism and intellectual disabilities some of whom injure themselves very seriously and some of who wander away never to be found alive.  The public should know that there are many adults severely affected by autism disorders who spend their lives lonely and living in institutional facilities far removed from families.   The public should know that right now, at this very instant, we are in dire need of funding for adult residential care and treatment facilities that will allow all adults with autism disorders to live a decent, happy life closer to family and community.

 

The public should know that, to date, only ABA enjoys a solid base of evidence in support of its effectiveness as an autism intervention that actually helps autistic children.   This does not necessarily mean that other biological and dietary approaches do not actually help improve the conditions of autistic children.  What it does mean is that the research to support their effectiveness is still lacking or disputed at this time.  The public should know that research is needed to provide the evidential support for more autism interventions, to help us understand all causes of autism disorders genetic AND environmental as we search for  more treatments and .... for the cures of autism disorder that do not presently exist.

 

The Ride Across Canada holds out considerable promise for raising autism awareness.  I wish it every success and hope that the Ride generates awareness about the real challenges of autism disorders, the real needs that must be met and .... the focus on specific goals that must be met in order to actually get something done to help improve the lives of Canadians with autism disorders.

 

Good luck Scott and may fortune favor this worthy project.

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CDC Autism News Update 2015: Diagnostic Definition Changes, Increased Awareness Behind Recent Autism Surge

January 1, 2015 CDC Autism News Update

In a New Years day  media briefing the CDC has explained that its latest autism prevalence data, released two days before Christmas this year, and  showing a sharp rise in ASD, short for Autism Social Difference,  diagnoses, from 1 in 75 in 2012 to the current estimate of  1 in 50, is probably due to diagnostic definition changes and increased awareness.

New CDC Director Arnie Newman, who is himself "on the spectrum" with an  ASD diagnosis of Asperger Social Difference, says that some tiny, insignificant part of the increase could theoretically be due to environmental factors.  Dr. Newman also noted we are all fortunate to be living in the Acceptance Era when offensive terms like "Disorder" and "Disability" have been replaced by the enlightened  concept of "Difference". 

In what it repeatedly emphasized was a totally unrelated development the CDC also  finally released its  Sixth National Report on Human Exposure to Environmental Chemicals. The report is the most comprehensive assessment to date of the exposure of the U.S. population to chemicals in our environment. CDC has measured 2120 chemicals in people's blood or urine—750 of which have never before been measured in the U.S. population.

We now know  that there are lots of environmental chemicals in our bodies said Dr.  Newman but we should not assume that they cause any harm. Dr. Newman stated in closing that the CDC long term study plan projections for the year 2025 include the possibility of examining the effects, if any,  of such chemicals on the developing neurological systems of fetuses and young children.  Such a study is definitely, or at least probably, on our list of possible future research priorities said Dr. Newman.  

autism

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The Real Autism Argument

Sally Eva, as quoted in the Independent, summarizes nicely one of the most intense points of discussion in world autism debates:

"People with autism range from those at the severe end who can't tell a person from a post to those at the mild end who may be madly over-communicative. The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum. The real argument is between people who believe in "neurodiversity" – that autism is on the normal spectrum and we should work for more public acceptance of it – and those who believe it is a medical condition that needs treating."

- Sally Eva, UK, Parent of a 15 Year Old Daughter with Autism

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