The Evolution of Support for Autism: Trials and Tribulations of Public Support
- Lincolnshire Autism Awareness Project
- May 4, 2024
- 3 min read
The history of the public’s perception of autism, as well as their understanding, has evolved significantly over time. While the concept of autism was still in its infancy, many psychologists mistook its traits for schizophrenia – for example, in 1938 children suspected to have had autism were described as having “schizoid psychopathy,” and the term “autistic” was coined to describe their “tendency towards solitude and avoidance of other people.” Others suggested that autism came from “refrigerator mothers,” or as theorized by Leo Kanner in 1949: “cold and detached” parents were the root of the condition.
Nearly eleven years later in the 1960’s, passionate disagreements between scholars ensued, and the field of autism research was marked by a heated debate between two influential figures - Bernard Rimland and Bruno Bettelheim. Rimland’s theory challenged the prevailing beliefs at the time; he believed that autism was a neurological condition that was not the result of any environmental factors. Rimland's work laid the groundwork for a more nuanced understanding of autism, steering the discourse toward a more scientific exploration of the disorder's biological roots.
Rimland’s perspective went head to head with that of Bettelheim, who clung to the belief that the quality of parenting during a child's formative years held the key to managing autism’s behavioral implications. He placed significant emphasis on the role of mothers, much to their resentment and chagrin: The relationship between mothers and psychiatrists soured as mothers believed psychiatrists were making them feel as if they were to blame for their children’s autism.
Until the late 90’s, many believed that forms of therapy and support for children with autism were a means of reaching out to a child from within their “autistic shell” and drawing them out. The ideal result was to change a child with autism into a near-“normal” functioning child and eliminate their autistic traits – and thus, the autism self-advocacy movement was born. Autistic self-advocates opposed early autism interventions with a stated treatment goal to “cure” a child with autism.
Yet misleading publications regarding the cause of autism remained: In 1998 Andrew Wakefield, M.D. published his paper in the Lancet suggesting that the measles-mumps-rubella (MMR) vaccine triggers autism. Despite the report being retracted and Wakefield having his medical license revoked, the impact of the myth is still felt today and plays a critical part in the platform of the anti-vaccine movement.
In the face of these challenges, the autism rights movement, otherwise known as the autistic self-advocacy movement, has expanded to demand tolerance for what they refer to as neurodiversity, garnering support from both neurotypicals and parents of autistic children. But controversy remains. As progress is made in autism research and new data comes out (in 2020 the CDC published that one in 54 children have been identified with having an ASD diagnosis, and research has also been done identifying autism-related genes involved in early brain development) some question the intersectionality of scientific development in the field of autism with autism acceptance – for example, if we were able to detect an embryo with autism, how would the parents react?
All in all, acceptance and providing resources for education about autism should be prioritized above all. As stated by Andrew Solomon in New York Magazine in 2008 neurodiversity activists light the way to such love—a model of social acceptance and self-acceptance that can redeem whole lives.
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