Redefining Autism: Should the Autism "Spectrum" Concept be Abandoned?
Posted Sep 28 2009 10:04pm
Should the concept of an autism " spectrum" of disorders be abandoned?
The DSM III originally included strict criteria for Kanner's infantile autism. These strict criteria were relaxed in the DSM III-R which " broadened the concept of autism to include children who, although socially impaired, are not pervasively unresponsive to others( 1 )". Another huge expansion took place with the DSM IV inclusion of Asperger Disorder in the Pervasive Development Disorders catego ry: " Asperger Disorder is characterized by the same types of social impairments seen in autism plus the development of very bizarre intense interests such as bus timetables, insects, meteorology, cartography, etc. It is distinguished from autism by the presence of normal cognitive development and the absence of clinically significant language delay. In other words, children with Asperger Disorder have normal IQ and usually are speaking in phrases by three years of age.( 2 )"
The PDD's have in common usage become referred to as Autism Spectrum Disorders and from there it has become common to refer to all forms of PDD's as "Autism". The expansion of the autism "spectrum" has been cited each time an increase in rates of autism diagnoses is reported. When my son was initially diagnosed in 1998 the figure of 1 in 500 persons having "autism" was commonly cited, then 1 in 250, 1 in 166, then 1 in 150 and soon the CDC is expected to fall in line with the UK figure of 1 in 100. Each time the estimate changes the expansion of the criteria for defining "autism" is trotted out to argue against the existence of a real increase in autism.
The expansion of the diagnostic criteria of "autism" disorders have become a useful tool for public health officials who wish to maintain the position that autism is entirely genetic, that there are no environmental causes and especially that autism can not be triggered by vaccines. It helps in justifying the enormous disparity in funding genetic autism research compared to environmental autism research. In 1999 Teresa Binstock reported the " it's gotta be genetic" paradigm of autism research funding. Ten years la ter Irva Hertz-Picciotto states that the discrepancy is still between 10 or 20 to 1 in favor of genetic over environmental autism research funding. The expanded definition explanation has been used, used again, and again in justifying the argument that there is no real increase in autism increase, that autism is entirely genetic.
The expanded definition of autism to include High Functioning Autism cases and Asperger Disorder creates confusion in the public mind over what constitutes autism and leads to conflict amongst persons affected by "autism". To many members of the public an autistic person is someone like Michelle Dawson, a former Canada Post postal worker who excelled in a very complex work environment, went on to become a researcher, appear before the highest court in Canada, before Human Rights Tribunals and in countless media interviews. They do not see the autistic person who can not speak OR communicate with assistive technology. The public does not see the persons with Autistic Disorder living their lives in institutional care.
Persons with Asperger and HFA often react to what they call negative depictions of autism which they no longer consider to be a medical disorder, equating autism with left handedness or homosexuality as differences not disorders. The recent anger amongst persons with HFA and Asperger Disorder over the "I Am Autism" video is directed at the depiction of some of the harsh realities that often accompany Autistic Disorder. These people do not want to be associated with intellectual deficits, serious behavioral issues or serious family or societal expense. It hurts and offends some with HFA and Aspergers to be compared to people with severe Autistic Disorder, people like my son.
The "spectrum" concept that helps create confusion also helps create some confusion in autism research. Researcher Dr. Laurent Mottron works almost exclusively with HFA/Asperger subjects and his research often been aimed at demonstrating the innate abilities of persons with HFA/Asperger Disorder. Historically Dr. Mottron was conscientious about pointing out that his subjects were persons with HFA/Asperger Disorder as opposed to persons with Low Functioning severe Autistic Disorder. Some recent studies have not made that distinction clear and his studies are also interpreted by many as applying to "autism" generally. It is difficult to compare autism studies or data over extended periods of time because of the different ways in which autism is referred to in the research literature with some making clear distinctions between low functioning Autistic Disorder and those with HFA or Aspergers while others simply refer to Autism.
One of the most bizarre consequences of the expanded definition of autism in the DSM-III R and DSM-IV is the attempt by some persons with Asperger Disorder to extinguish the right and responsibility of parents to speak on behalf of their autistic children or to seek treatment and cure for their children. The " Autism" Self Advocacy Network is led by Ari Ne'eman a very high functioning person with Asperger Disorder whose disorder would not have been included in the "autism" spectrum in the DSM-III or the DSM-III-R.
Why Mr. Ne'eman and his followers are not content to call themselves the Asperger Self Advocacy Network is not clear. Why this very high functioning person with Asperger Disorder feels that it is legitimate for him to speak on behalf of all persons with Autism Disorders of any type and declare that they do not want to be cured is not clear. Why he, and his followers, feel it necessary to lobby against any negative depiction of autism is not clear. Why he, and his followers, feel that they have the right to dictate to parents that they should not seek to treat or cure their own children of a severe neurological disorder is not clear.
What is clear is that the Pervasive Development Disorder category of the DSM has morphed into the Autism Spectrum and from there to "autism" and this has not been helpful.
Maybe it is time to abandon the Autism "Spectrum" and establish two separate categories with Autistic Disorder comprising classic autism while HFA and Aspergers Disorder are placed together in one category .... Aspergers Disorder.
Or perhaps a better solution to the Autism Spectrum confusion would be to abandon the spectrum concept altogether by removing HFA and Asperger Disorder from the DSM leaving only Autistic Disorder as a category for those with severe or low functioning autism. Many persons with HFA and Aspergers argue that they do not have a medical disorder at all. Maybe it is time to acknowledge their arguments, remove Asperger Disorder from the DSM, and go back to the DSM III criteria for Infantile Autism or Autistic Disorder.