I do not think the DSM-5 committee responsible for the New Autism Spectrum Disorder will yield to pressure to revisit the new autism diagnostic criteria. I attended IMFAR 2012 in Toronto and specifically attended two presentations by Dr. Susan Swedo of the committee responsible for the new autism definition. She was visibly upset over the criticisms received from those concerned with the possible exclusion of very high functioning persons from the autism spectrum but she dug in her heels. She did confirm, in response to my questions after the second presentation, that some intellectually disabled will not be diagnosed with autism under the DSM-5 definition who might have received an autism diagnosis under the DSM-IV. If there is any change it will come on the high functioning end and will tend to include more high functioning autistic persons, the subjects of much interest by NYT reporter Amy Harmon and others in the Mainstream Media. At the same time there is no significant pressure on the DSM-5 committee members to reconsider the express exclusion of the intellectually disabled in mandatory criterion A of the DSM-5 Autism Spectrum Disorder.
CDC autism expert Dr. Marshalynn Yeargin-Allsopp stated in an interview with the Canadian Medical Association Journal that the vast majority of persons with classic autism, approximately 80%, also had intellectual disabilities prior to the DSM-IV addition of Aspergers which effectively watered that figure down to approximately 40%:
"Prior to the 1980s, only those exhibiting autism’s classic symptoms (communication and behavioural difficulties and a lack of social interaction) were considered affected. Those symptoms remain the foundation of “classic” autism. But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the Centers for Disease Control and Prevention.
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."
The DSM-IV effectively expanded the definition of what constituted autism and, in the process, reduced the presence of the intellectually disabled on the autism spectrum from vast majority status to minority status. Since then the Mainstream Media regularly does a feature on the accomplishments of Dr. Temple Grandin and other very talented high functioning persons with autism/Aspergers. Michelle Dawson and Ari Ne'eman who function very well in complex and challenging legal, political and media proceedings command attention and help redefine autism from a disorder with significant daily living impairments to a different, superior way of thinking. Meanwhile those most severely affected by classic autism disorders, particularly the vast majority with intellectual disability, remain largely invisible, marginalized by Neurodiversity identity ideology which disowns their presence on the autism spectrum and by media obsession with feel good stories including movies and television shows featuring brilliant characters with Aspergers.
The primary agent in the final push to remove those with intellectual disability from the autism spectrum is the bias of autism researchers. Bias is certainly a factor in autism research as noted by High Functioning Autism expert and anti-ABA activist Dr. Laurent Mottron in his Nature commentary in which he paid lip service to the quaint notion of autism as a disability affecting some but then displayed his own bias by redefining autism in terms of the autistic researchers who work with him
"I am a researcher, clinician and lab director concentrating on the cognitive neuroscience of autism. Eight autistic people have been associated with my group: four research assistants, three students and one researcher. Their roles have not been limited to sharing their life experiences or performing mindless data entry. They are there because of their intellectual and personal qualities. I believe that they contribute to science because of their autism, not in spite of it. Everyone knows stories of autistics with extraordinary savant abilities, such as Stephen Wiltshire. None of my lab members is a savant. They are ‘ordinary’ autistics, many of whom, on average, outperform non-autistics in a range of tasks, including measures of intelligence." (Underlining and bold highlighting added - HLD)
Mottron also noted autism researcher bias in his Nature commentary:
"Even researchers who study autism can display a negative bias against people with the condition. For instance, researchers performing fMRI scans systematically report changes in the activation of some brain regions during a task as indicative of a deficit in the autistic group, rather than of their alternative, yet sometimes successful, brain organization."
Dr. Mottron's own bias is on ironic display in the above quote when he references fMRI scan result interpretation as indicative of autism researcher bias. He fails to mention that such scan studies routinely exclude low functioning, severely autistic subjects because of the difficulties in managing the behaviors of such subjects during the examination process. This bias against the low functioning, severely autistic would include the vast majority of persons with classic autism and intellectual disability. Mottron, who has written many published journal articles on persons with High Functioning Autism and Aspergers, has demonstrated his own bias against those with autism and intellectual disability by arguing with flimsy, if any, evidence that intellectual disability does not exist in autism.
A recent autism study employed lower functioning autistic subjects. In A stable pattern of EEG spectral coherence d istinguishes children with autism from neuro-typical controls – a large case control study , Frank H. Duffy and Heidelise Als used classic autism subjects because of the tendency of autism studies to exclude them as reported in the study press release:
"Duffy and Als focused on children with "classic" autism who had been referred for EEGs by neurologists, psychiatrists or developmental pediatricians to rule out seizure disorders. Those with diagnosed seizure disorders were excluded, as were children with Asperger's syndrome and "high functioning" autism, who tend to dominate (and skew) the existing literature because they are relatively easy to study. The researchers also excluded children with genetic syndromes linked to autism (such as Fragile X or Rett syndrome), children being treated for other major illnesses, those with sensory disorders like blindness and deafness and those taking medications.
"We studied the typical autistic child seeing a behavioral specialist – children who typically don't cooperate well with EEGs and are very hard to study," says Duffy. "No one has extensively studied large samples of these children with EEGs, in part because of the difficulty of getting reliable EEG recordings from them."
Autism research has generally tended to exclude low functioning autistic participants as was acknowledged by an article in the Financial Times about the DSM-5's new autism spectrum diagnostic criteria Dr Craig Erickson, chief, Christian Sarkine Autism Treatment Center, Indiana University School of Medicine noted the presence of a high functioning autism bias in autism research:
"Erickson noted that there is often a bias in clinical trials, where high-functioning patients are typically enrolled as they are more readily able to tolerate routine procedures such as blood tests part of clinical trials. Further, it is easier to make improvements in less-impaired children, Elliott said, noting the Phase II Kuvan in autism trial included children with IQs in the 50-60 range as well as Asberger patients."
Dr. Catherine Lord of the DSM5 committee that has crafted the New Autism Spectrum Disorder has also noted the tendency of autism research to exclude those with multiple disabilities and moderate and severe intellectual disability in Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families :
""However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]
The APA has stated in its form letter reply to those who submitted concerns to them about the new Autism Spectrum Disorder criteria that the new definition is based on existing research:
"The [DSM-5 Autism Spectrum Disorder] proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders."
As the father of a severely autistic 16 year old son with "profound developmental delays" I do not have the luxury of excluding my son from the realities of haircuts in busy hair salons, dental and other medical procedures and countless other challenges of daily life. I have to deal with and face those realities in my son's best interests.
The conduct of autism researchers in excluding low functioning autistic participants with intellectual disabilities from autism research and, inevitably from the DSM-5 era of autism diagnoses, is not justified by their own professional requirements either. An Italian study, instead of trying to cleave meatloaf at the joints by removing the intellectually disabled from the autism spectrum, took the opposite approach and having found a close connection between ID and autism disorders recommended future research into that connection. In Autism and intellectual disability: a study of prevalence on a sample of the Italian population. La Malfa G , et al concluded that their 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."
The DSM-5 team, like so many autism researchers on whose work they based their new Autism Spectrum Disorder, have chosen to ignore the recommendation from the Italian study and pretend that no relationship exists between ID and autism disorders. They have betrayed the most severely affected by autism disorders those with autism and intellectual disability.