Autism Awareness Month: A Brief History of the Diagnosis - A NAMI in the Lobby Newsletter Article

For National Autism Awareness Month, we wanted to include a brief article about the history of the diagnosis, but first need to make a brief disclaimer. Autism is complicated, and the way the diagnosis has been handled in our society and by professionals and patients alike is not always clear-cut. As someone who has never been diagnosed with Autism myself, I cannot fully understand what impacts the diagnosis and the relevant conditions have on a person’s life. Further, the spectrum nature of the diagnosis indicates that people living with it likely are impacted in a variety of different ways. In this article, I will lay out the timeline of linguistics and diagnoses referring to what we now know as Autism Spectrum as objectively as I can.

According to the National Institute of Health, the term Autism was first used in 1911 by Eugen Bleuer. If the name sounds familiar, it’s because Eugen Bleuer is recognized in psychology as the psychiatrist who had coined the term Schizophrenia also in 1911 (it’s worth noting that the symptoms of schizophrenia were previously studied but under different labels). Under Bleuer's definition, Autism was used to describe a characteristic of his definition of schizophrenia, where the individual was self-isolating to the extent that there was “detachment from reality, together with the relative and absolute predominance of the inner life” (Bleuer). Bleuer spent most of his time studying and discussing adult

conditions but expressed on occasion that he believed these conditions were apparent in some youths as well.

In1943, Leo Kanner, a child psychiatrist, began to recognize some patterns in the children he was working with as self-sufficient, withdrawn, slow to relate to people, speech disturbances, and high intelligence potential. While the symptoms Kanner analyzed were similar to and even overlapped with Bleuer’s Autism Diagnosis, Kanner believed that the developmental nature and adult expression of Autism were distinct from schizophrenia, and developed the term “Early Infantile Autism” (also known as Kanner Syndrome). Kanner also believed that the diagnosis could be linked to cold, distant parenting, a term that later became known as “refrigerator-mothers.”

At the same time, Hans Asperger, a physician, was making nearly the same observations. There is a lot of controversy surrounding Hans Asperger and Asperger’s, especially because his studies were funded by the Nazi Regime and rooted in eugenics and "race hygiene" politics. Like Kanner, Asperger observed traits including isolation, self-sufficiency, and disconnect. In some of the children he worked with, he also noted a narrow focus of interests, often restricted to unrealistic and highly original (creative) themes, overachievement in specific cognitive domains, and a more sophisticated appearance. What Asperger was observing is now recognized by many professionals to be the more subtle or “high-functioning” Autism (note that there is a lot of controversy surrounding the terms high

and low-functioning).

In the 1970s and 1980s, as research on the genetics of schizophrenia progressed, it became clearer that autism was not a pediatric version of that illness. The terms childhood schizophrenia and childhood psychosis consequently dropped out of use. This is also when the debate surrounding Autism as a Mental Health Condition vs a Developmental Disorder was brought to the forefront. On one side, some doctors believed that the condition developed due to maltreatment and psychological conditions as a child, and on the other that it was a biological developmental condition not to be blamed on anyone. In the 1980s Lorna Wing was among the first to establish autism as a spectrum that could present in

different ways and affect all age groups and people at all levels of intellectual abilities.

Between the 80s and the 2010s, there was a lot of research regarding Autism as a spectrum and biological factors. At the same time, great steps were being taken in terms of advocacy and support. With IDEA (Individuals with Disabilities Education Act), students were able to receive assistance if they needed it. Various non-profit organizations were formed to support both Autistic youths and adults, and many of these organizations make it a priority to raise the voices of individuals with Autism. In fact, the redefining of Autism Spectrum in the DSM V is largely due to the advocacy efforts from the community. The new edition combines four independent diagnoses — autistic disorder, Asperger syndrome, pervasive developmental disorder not otherwise specified (PDD-NOS), and childhood disintegrative disorder — into a single label of autism spectrum disorder. The rationale for this change is that these disorders have the same essential symptoms but at varying degrees of severity.

So... That’s a lot of information, and a bit of it is controversial because that’s what happens in any field, especially when we are trying to label something. If you want to learn more about the Autism Spectrum, let us know and we can pull together some resources for you.