Transcending Neurotribalism: Rescuing Autism Advocacy from Identity Politics

by Sarah Dillingham | New English Review

Autism Spectrum Disorder, or ASD, is a complex array of developmental disabilities varying in severity, characterized by impairments to communication and interaction, executive functioning, motor skills, and sensory processing. First identified as a distinct psychiatric disorder in 1943 by Leo Kanner, autism has skyrocketed in recent decades from the sole 11 cases initially identified to a rate of about 2 to 4 cases per 10,000 throughout the mid-20th century, to the CDC’s most recent estimate of 1 in 59 counted among 8-year-olds and the NCHS’s reported rate of 1 in 36 among children aged 3 to 17 years—or 1.7-2.8% of the U.S. population, with prevalence four times higher among boys (1 in 28 boys aged 3 to 17). There is no longer a single extended family, school district, or community in America so remote as to be untouched by this pervasive and ubiquitous condition: everyone knows someone diagnosed with ASD in this new era which authors Mark Blaxill and Dan Olmsted have christened “The Age of Autism.” Indeed, moving into the 21st century, autism prevalence—or at least the prevalence of ASD diagnoses—increased by 290%, as the incidence of all developmental disabilities increased by 17% between 1997 and 2008. By 2008, one in six American children was diagnosed with a developmental disability. While autism prevalence remained fairly constant throughout the early to mid-20th century, autism rates sharply curved upward in the 1990s and increased 21-fold over the next decade—reaching 7 cases per 1,000 by the year 2000, when the CDC first began tracking rates of ASD.  Since that time, reported prevalence has increased 11% per year on average in the U.S. As rates of autism diagnosis began exploding in the 1990s, so did competing theories of causation and interpretations of the disorder itself.  Autism was first defined and treated within the context of Freudian psychoanalytic theory which prevailed in the early 20th century; Kanner and his contemporaries defined autism as a strictly psychological condition resulting from aloof and deficient parenting, or “refrigerator mother syndrome.” Most children diagnosed with autism during that period were institutionalized and their parents blamed for their condition, resulting in misery and tragic outcomes for many patients and their families. In 1964, Bernard Rimland, a developmental psychologist and parent of an autistic child, published an alternative biological theory of causation which sparked a pivot in the perception and treatment of autism.Applied Behavioral Analysis (ABA) emerged in the 1960’s as the preferred treatment protocol for autism, and in 1980 autism was added to the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). Subsequent editions further honed the diagnostic criteria, and the DSM IV, released in 1994, expanded the criteria to include Asperger’s Syndrome within the broad umbrella of what are now defined as autism spectrum disorders.

The steep rise in reported prevalence beginning in the 1990s seemed to correlate neatly with the expansion and refinement of diagnostic criteria, which begged the question: do the ever-improving diagnostic criteria and treatment protocols cause increasingly accurate measurement of a constant background rate of autism in the population? Or are they the natural result of a burgeoning environmental epidemic, developed in response to the emerging reality of new cases? Are autism rates really rising, or have better diagnostic tools and increasing awareness driven the double-digit year-over-year increase in prevalence, for four decades following the inclusion of initial diagnostic criteria in the DSM? The answer to this question informs a more fundamental one: if “refrigerator parenting” doesn’t cause the symptoms of ASD, what does? Is it environmental or innate and inherited, or some combination of both?

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