99% of adults diagnosed with autistic disorder as children are incapable of living independently.
With few exceptions, adults with autistic disorder lacked capacity to work or live independently. (Stock photo)
By Jill Escher
Forget all the hype about autism as a superpower. A new study out of South Carolina following 187 people diagnosed with autistic disorder found their long-term outcomes to be overwhelmingly negative. A team under Roger Stevenson of the Greenwood Genetic Center published the paper, “Autistic Disorder: A 20 Year Chronicle,” in the Journal of Autism and Developmental Disorders in June.
The subjects were followed over a course of 20 years. They had been enrolled in the study during a three-year period from early 1995 to early 1998, and were between the ages of 1 and 21 at that starting point. All were receiving services for autism from the South Carolina Department of Disabilities and Special Needs. The subjects included 153 males and 34 females, representing a 4.5:1 male–female ratio. Sixty-six percent had white ancestry, 32% black ancestry and 2% other ancestry, numbers that parallel the population in South Carolina. Of the enrollees, 84% had co-occuring intellectual disability. The average IQ in the cohort was 49. Twenty years later, at the average age of 27, the investigators ascertained their outcomes.
The outcome data was grim, showing pervasive inability to live independently, hold a job, or manage money. Few became independent, with 99% unable to live independently. Of those, 70% lived at home with relatives, 21% lived in disability homes in the community, and 8% in residential facilities.
A mere 3.7% attained postsecondary education, about half of those representing certificates from college disability programs. While the majority were considered incapable of holding a job in the competitive workspace, some worked in disability workshops or other sheltered positions. Most participants were incapable of handling money, even with caretaker assistance, with only 9.5% considered capable.
The study also probed questionnaires and biological samples for patterns and causes. It found, for example, that 12% of siblings had autistic, mental health, or other behavioral manifestations, a figure that is in the ballpark of findings from similar studies, if somewhat lower. A review of genetic data revealed that 29 participants (about 15%) had genetic or genomic alterations considered to be pathogenic, but the genetic findings did not correlate with IQ. This rate is slightly higher than the 10% rate commonly seen in other studies, but since this cohort was limited to more severe forms of autism (autistic disorder under the DSM-IV is a segment more narrow than “ASD” under the DSM-5), and therefore possibly more likely to be suffering from genetic disease, this finding is not altogether surprising. In addition, 20 participants were born at or before 32 weeks gestation or had other possible prenatal or perinatal complications. No consistent or diagnostic facial dysmorphology was identified. Structural brain malformations were distinctly rare.
The study findings also underscored enormous unpopularity of the neurodiversity philosophy: fully 95% of parents or caretakers who responded to a study question relating to treatment overwhelmingly desired a cure if one were available.
Overall, the study provided a needed reality check about the long-term outcomes of children diagnosed with autistic disorder. Advocates might hype the idea of autism as a superpower or autistic adults becoming independent and capable of competitive integrated employment, but the data tell another, altogether more devastating story.
Jill Escher is the President of the National Council on Severe Autism.