Politics to making a diagnosis of Autism and/or Intellectual Dsability? Yes!!
Times have changed. In the last 5+ years, a diagnosis of Autism is sought after as a diagnosis particularly if the other diagnosis to rule in or out is Intellectual Disability formerly Mental Retardation.
See the post below wherein the MD is haunted by a diagnosis of mild Autism which she made 20 years ago. Perhaps if that MD had suggested what treatments could be offered for mild Autism and typical progress made through social skills training, then perhaps the parents might have returned on their own for follow up appointments.
Twenty years ago we did not have internet. Now, it’s possible to get e-mails and immediately set up a connection with parents so as to address their concerns.
Recently, I diagnosed a 13 year old boy with Intellectual Disability, Unspecified. My guess is that he has Moderate ID, i.e., an I.Q around 40-50. When the parents were interviewed they said that they wanted a diagnosis of Autism. Later, at another meeting they entirely rejected a diagnosis of Intellectual Disability. Because Intellectual Disability affects all areas of general functioning whereas Autism is more limited it will not take 20 years to see which diagnosis is more accurate. The politics of this diagnosis still reverberates. Parents want any mention of Intellectual Disability stricken from our records. Politics involved? Yes!!
Haunted by an autism diagnosis: A sense of closure after 20 years
It was my first parent conference ever. I had watched an experienced social worker give a series of diagnoses to a family and now—following the “see one, do one” model—it would be my turn. Things started off well. When I reviewed the cognitive and language data, the parents were attentive and the mother’s nods indicated that the information was consistent with her own thoughts about her son. When I moved on to discuss the constellation of behaviors that included poor eye contact, conversational weaknesses and restricted interests and suggested that they might be manifestations of mild autism, the mother vehemently stated her disagreement. She said that she “had seen autism and this was not it.”
The family never returned for the scheduled follow-up appointments. I had no information about what had become of the boy. But I thought of him over the years; he haunted me. I went on to develop a clinical and research passion for autism and to head the RELATE program for early diagnosis and treatment of autism here at Einstein. The field of autism changed in the background, with the concept of the spectrum of autism becoming widely accepted. But I wondered through the years if, in my clinical debut, I had jumped the diagnostic gun. Had I given these parents an incorrect diagnosis for their son—one with lifelong implications? The case haunted me as I wondered whatever became of the boy and his family.
I looked back at the old chart and the release of records form and found that there was another sticky note affixed to the record. It said that the patient was currently being seen on the adult unit, and those recent records were also attached. I excitedly flipped through the pages to find the new report. The record began: “The client is a 29-year-old male who reports that he was diagnosed with mild autism as a child, that he completed high school, went on to college but could not manage it and dropped out and has been unable to hold a job since due to social difficulties. He comes seeking treatment.” The report goes on to describe his poor eye contact, trouble with topic maintenance and trouble understanding the examiner’s perspective. It was clear, based on the recent evaluation and current attitudes and criteria, that the patient has an autism spectrum disorder.
From a selfish perspective, this follow-up—more than 20 years later—gave me a sense of closure. The long-ago diagnosis had been accepted, at least by the young man himself, and he continues to show signs of this generally lifelong diagnosis. But I ached to know the course his family had taken in accepting the diagnosis and what help he had received along the way. Could he have done better and succeeded in his education and work activities if he had received more specialized help, such as social skills training—readily available these days but hard to find in the 90s? I don’t think the case will haunt me in the same way it had. Maybe in some new ways, though, it will.
Lisa Shulman is a neurodevelopmental pediatrician and director, infant and toddler services, Children’s Evaluation and Rehabilitation Center (CERC), Albert Einstein College of Medicine. She blogs at The Doctor’s Tablet.