Autism’s curious history in the Diagnostic and Statistical Manual, the American Psychiatric Association’s diagnostic bible, reveals how dramatically the diagnosis has evolved over the past half-century or more. The term “autism” has become much more common in the DSM, replacing childhood schizophrenia and childhood psychosis. Its clinical characteristics and criteria have also changed and expanded. This matters not only because the DSM has guided diagnostic decisions but because those decisions have also governed eligibility for educational services and health insurance coverage.
In the first edition of the DSM, published in 1952, the word autism appeared only once, in connection with schizophrenic reactions in young children, much like what was meant when the term was first coined in 1911 by Eugen Bleuler, the same person who introduced “schizophrenia.” In the first DSM, it was only because of their “immaturity” and “plasticity” that children presented a different clinical picture than older individuals with severe mental illness.
By 1968, in DSM-II, “autistic, atypical, and withdrawn behavior” was still associated with the presentation of schizophrenia in childhood. The fact that it could also result in mental retardation was added, however. Not until the DSM-III in 1980 would Infantile Autism appear as a diagnosis that was separate from schizophrenia. Six diagnostic criteria were required, including appearance before 30 months of age, gross distortions or deficits in language development, and peculiar, sometimes rigid attachments to objects. The DSM-IIIR (1987) changed the title of the diagnosis to Autistic Disorder and described autism as “pervasive lack of responsiveness to other people.”
When DSM-IV was published in 1994, the number of possible diagnostic criteria had increased to sixteen and four subcategories were listed under Autistic Disorder: Asperger’s Disorder, Pervasive Developmental Disorder, NOS (not otherwise specified), Rett’s Disorder, and Childhood Disintegrative Disorder. Asperger’s became the best known. Named after Hans Asperger, the Viennese pediatrician who first described “autistic psychopathy” in 1944, Asperger’s was understood as “high-functioning” autism. Associated with fictional characters like Spock on “Star Trek” and “The Big Bang Theory’s” Sheldon Cooper, Asperger’s was a diagnosis given to people with considerable skill, especially in technical, scientific, or musical fields, who nevertheless lacked social awareness and savvy. Rett’s Disorder and Childhood Disintegrative Disorder were applied to children whose development was typical initially but who lost significant skills and regressed toward autism early in life. PPD-NOS was a category reserved for children who do not meet all the criteria for Autistic Disorder and presented atypical symptom profiles. Children with PPD may not have conformed to the age of onset required for autism or displayed the requisite number of behavioral symptoms common to children with the diagnosis: mutism or speech impairments, repetitive behaviors and restricted interests, failure to engage with others or develop imaginative play, fixation on objects.
In 2013, when the DSM-V appeared, the diagnostic terminology changed yet again. All four subcategories were swept under one new heading: Autism Spectrum Disorder or ASD. This revision was intensely controversial. The removal of Asperger’s generated particularly heated debate within psychiatric, research, and advocacy communities, where there was disagreement about the need for greater precision in drawing diagnostic boundaries. Important questions were raised about whether eliminating previous diagnoses would result in the denial of needed services to many children and families. Autism Spectrum Disorder was a compromise. It offered the appearance of a more bounded syndrome while still allowing for enormous internal variation. The official definition of ASD allowed autism with or without intellectual disability, with or without language impairment, and with severity levels ranging from “requiring support” to “requiring very substantial support.”
Like earlier episodes in the history of autism as a diagnosis, Autism Spectrum Disorder combined the quest for scientific rigor with purposeful vagueness. Autism’s appearance and treatment in the DSM since 1952 illustrates that autism’s rise to prominence had a great deal to do with heightened awareness of the term, more expansive diagnostic criteria, and greater willingness to label autistic children than in the past. Autism itself—whether it is one syndrome or many—remains elusive and uncertain.