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16 Years After Conor's Autism Diagnosis: Lots of Conor Joy But No Progress in Autism Research

Posted Feb 20 2014 8:46pm
Yesterday was Conor's 18th birthday. Today is exactly 16 years after his autism diagnosis, received the day after his second birthday and after several months of testing and observation. Conor, now a young man, is still the happy boy that brings joy to his Mom and Dad, along with many serious challenges, challenges that restrict his life. Here in New Brunswick, Canada, some progress was made by a commitment to evidence based intervention by a determined parent advocacy movement. In the big picture though there has been no meaningful progress and in fact there has been very substantial regression.

The regression has occurred with the creation of the Autism Spectrum Disorder diagnostic category in the DSM-5, unifying into one disorder several categories at a time when the incredible variety and heterogeneity of the autism disorders, the "autisms" as US NIMH Director Dr. Tom Insel has described these conditions should be crystal clear.  At the same time the masterminds who crafted the new DSM-5 ASD still describe groups of disorders such as "autism" intellectual disability and epileptic seizures as co-morbid conditions implying that they are separate conditions appearing together coincidentally when in fact their frequent appearance together clearly indicates they are part of one disorder, condition or subset of symptoms which most likely share common causal factors.  

Whatever way one looks at it autism research will be set back by creating a different condition to compare to earlier versions. The autism research community really has few successes, since Lovaas and those who confirmed and expanded on his work, and few causal factors have been identified with certainty.  Now the autism research community that has failed so miserably will face an additional hurdle ... comparing apples to oranges ... DSM-5 autism cases to DSM-IV cases and adjusting their results to accommodate the differences.  Good luck with that.
DSM-IV or DSM-5 the autism research community still clings tenaciously to the belief that with respect to the autisms "it's gotta be genetic".  While lip service is paid to the concept that autism results from the interaction of genetic and environmental factors research dollars still flow overwhelmingly to genetic based autism research.  Calls for an environmental autism research strategy by respected authorities  like Grandjean, Landrigan and Birnbaum are largely ignored.

Convenience and the false belief in a "pure" autism also continue to strip autism research of any value.  Autism research subjects tend to be high functioning autistic persons who are easier to work with in conducting studies. The exclusion of more challenging lower functioning participants from autism studies is justified by the non evidence based belief in a pure autism.

The truth is autism research has produced nothing of significant value in the 16 years since my son's autism diagnosis 16 years ago today.  The autism research community failed persons with autism and their parents and families when they twiddled their thumbs while the cold mothers fantasy was allowed to prevail and cause harm to all touched by autism. Since then there has been many dollars spent on autism research with precious few results to show.

I am being realistic about the state of autism research over the last 16 years just as I am being realistic when I describe the great joy that our severely autistic son Conor has added to our lives.  To Conor I say thanks Buddy.  To the autism research community I say get your acts together, start producing some results. 

Conor at age 2 loved his cake and icing and that is still true today.  He was and remains a happy, joyful blessing in our lives despite the many serious challenges that his autism disorder and "co-morbid" intellectual disability and epileptic seizures present. 

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