The Autism Spectrum: Human Rights Perspectives.

Abstract

In the next decade, approximately half a million teenagers on the autism spectrum will transition to adulthood. Unlike earlier generations, who were institutionalized as children in state psychiatric hospitals or hidden by their families, many of today’s young adults with autism spectrum disorders grew up at home and attended school in their communities. This was a major accomplishment of strong and tireless advocacy on the part of families who challenged powerful governmental and bureaucratic forces. Whether teenagers will succeed as adults in their communities depends in part on the strength and tirelessness of their families and the responses of our society. We are at the beginning of a massive social experiment. Much of the outcome hinges on the attitudes of the over 70 million “neurotypical” (nonautistic) millennials, many of whom had opportunities to meet neurodiverse classmates in inclusive programs at school and may be more accepting of neurodiversity than are their parents. But now that the autism community is “aging out” of school, they will need to interact with the broader community, including older generations of neurotypical doctors, who had never seen peers with autism and who may be uncomfortable. This will come as a surprise. To pediatricians, the emergence of an adult population on the spectrum is no surprise. They have watched for decades the rapid expansion of the diagnostic criteria and the rapid evolution of therapeutic approaches. Pediatricians have been learning about autism for decades from experts and, perhaps mostly, from their patients. In contrast, their physician colleagues in adult medicine and other fields, such as urology, typically have limited exposure to adults diagnosed with autism. Because parents (or whoever is responsible for care) realize this, many still cling to their adult children’s pediatricians, begging them to continue providing care long after their children reach age 18. But … Address correspondence to Linda L. Demer, MD, PhD, Departments of Medicine, Physiology, and Bioengineering, CHS A2-237, UCLA, Los Angeles, CA 90095-1679. E-mail: ldemer{at}mednet.ucla.edu