Creating Autistic suffering: Failures in identification
This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning: This article contains discussion of systemic abuse and trauma inflicted by professionals. Some of the research cited contains person-first language and other problematic or ableist language. There is also discussion of sexism and racism.
The first part of this series looked at the trauma that Autistic people experience on a daily basis from birth, perhaps even before birth. We did this so we could start to paint a picture of why so many Autistic people experience what would be considered “poor outcomes”. In this next part of the series, we intend to dive into the issues around the identification of Autistic people.
Criticisms of “autism theory” and how it relates to identification
Let’s set the clock back just short of 100 years. In 1939 a man called Sigmund Freud died. This man, considered the father of psychoanalysis, had come to the end of a life focused on “emotional disturbances” and “unhealthy developments of the human mind” which he attributed to negative experiences in early childhood (Adkin, T.; 2021). While it’s true that childhood experiences can shape our adult lives, what we need to look at is how we define “unhealthy developments of the human mind” and, more specifically, how we define “unhealthy”. We need to bear in mind that “disordered” is defined by society.
“A mental disorder is a syndrome characterized by clinically significant disturbance in an individual’s cognition, emotion regulation, or behavior that reflects a dysfunction in the psychological, biological, or developmental processes underlying mental functioning.”APA. Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (2013)
The problem with Freud’s theories was that they implied that any deviation from the neurotypical mind was an “emotional disturbance” or an “unhealthy development”. He did this before autism had even been conceptualised, setting the stage for a great deal of the ableism that Autistic people now experience. From there it just gets worse.
Now let us look at the work of Leo Kanner. Kanner conceptualised autism and gave birth to autism theory in 1943. As expected, his theories on the development of autism were wildly problematic. Kanner believed that autism was related to the mother and child relationship; to be specific, he believed that the “refrigerator mother” was what led to Autistic children.
In 1944 we also had the extraordinarily controversial work of Hans Asperger and his “little professors”, but because Kanner got there first, the accolade of identifying autism went to him. Asperger’s work wasn’t really popularised until Lorna Wing revisited it in the 1970’s. Lorna Wing introduced the the work of Asperger back into the narrative towards the end of the 1970’s (Silberman, S. 2015).
From that foundation research into autism got worse and worse, with Bettelheim claiming that autism was the result of psychological harm, inflicted on children by their mothers. We also have Ivar Lovaas who is well known for comparing Autistics to animals, or blank slates who are not completely human. One thing that’s not well known about Lovaas is that he believed that behaviour was imprinted onto children by parent-child interactions. Therefore implying parental fault and building on existing theory, giving him a green light to develop abusive “therapies”.
Jumping forward, we have the massively (un)helpful theories of Simon Baron-Cohen et al. This particular individual has more or less shaped the modern understanding of autism, and he did this while getting pretty much everything about the Autistic experience wrong. According to Baron-Cohen, we lack theory of mind, an ability that (in his opinion) makes us human.
“A theory of mind remains one of the quintessential abilities that makes us human.”Baron-Cohen, S. (2001)
It doesn’t exactly take any mental gymnastics to see the implication that Autistic people are not human. Baron-Cohen also brought us other hits like extreme male brain theory (Baron-Cohen, S.; 2002).
Baron-Cohen’s work led to highly problematic rhetoric in autism theory, especially sexism.
“Some of us also struggle with understanding our gender, or lack of gender, and there aren’t always words to express our feelings. Add this with alexithymia, an inability to articulate or understand our own feelings, and we are in for one rocky ride! No wonder so many of us sit in these two closets for so long.”Munday, K. (2021)
Thanks to the historical work of so called “autism researchers”, we have entered into a world where autism is seen as a condition of young, white, males. Thompson et al (2003) concluded that:
“most of what we believe we know about autism is actually about males with autism”Thompson, T. et al (2003)
What we are seeing here is not a “different” kind of autism, it’s sexism. It is a failure to take account of the different societal influences that impact people on opposite sides of not just the well known binary of genders, but the entire spectrum of gender diversity. It also completely disregards autistic masking. It also does a huge disservice to people who were assigned male at birth, but do not fit the expectations of societal norms; completely ignoring the fact that regardless of whatever gender we identify with, we are all neuroqueer by our very existence (Walker, N. and Raymaker, D. M.; 2021).
“Just as the prevailing culture entrains and pushes people into the embodied performance of heteronormative gender roles, it also entrains and pushes us into the embodied performance of neurotypicality—the performance of what the dominant culture considers a “normal” bodymind.”Walker, N and Raymaker, D. M. (2021)
The sexism in autism theory is obvious, but what is often left out of the conversation is that, yes, researchers are often talking about boys, but more so, it’s always about white boys.
People of colour are typically diagnosed later, if at all, and face a harder time accessing services, as a result experiencing poorer outcomes (Broder-Fingert, S. et al; 2020).
“Empirical data on the mechanisms of inequities are generally lacking, although traditional contributors (structural racism, prejudice, education, income) are certainly at play.”Broder-Fingert et al (2020)
“When I—as a black person, as a woman, as an autistic adult, as the mother of black autistic children, as an advocate—think about the world of autism research and practice, the words of Doughboy come to mind. In a poignant ending scene from the late African American director John Singleton’s iconic debut film, Boyz n the Hood, Doughboy sadly remarks, “Either they don’t know, don’t show…or don’t care about what’s going on in the hood.” Similarly, when it comes to autism, either they—or should I say you all—do not know, do not show, or do not care about black, indigenous, people of color (BIPoC) very much.”Giwa Onaiwu, M. (2020)
What does this lead to?
Unfortunately all of these issues in autism theory lead to a lack of identification, which in itself is a passport to support. Without our needs being met by that support, we enter a world where Autistics are so traumatised that it is difficult to identify what an untraumatised Autistic person may look like. The diagnostic criteria itself is based on Autistic people in distress (Gray-Hammond, D. and Adkin, T.; 2021).
Formal diagnosis is indeed a privilege, in America it’s common for individuals to spend thousands on diagnosis. In the UK waiting lists for NHS diagnosis are often up to 4 years+ long, forcing many to take the private route to diagnosis. Which we will cover in more detail in the next part of the series by looking at systemic failures in accessibility to services.
All of the above separates us from our sense of self, our peer support, and our community. Three things that hugely contribute to good mental health and wellbeing in Autistic people, along with a sense of belonging (Botha, M. et al; 2021). It is vital that the Autistic community continue it’s work to change these problematic narratives.
“The multifaceted community which includes elements of belongingness, social connectedness, and political connectedness is a vibrant, and welcoming space for autistic people”Botha, M. et al (2021)
Adkin, T. (2021) Parent Blame. Where does it come from? tanyaadkin.co.uk
American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders (5th Edition).
Baron-Cohen, S. (2001). Theory of mind in normal development and autism. Prisme, 34(1), 74-183.
Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in cognitive sciences, 6(6), 248-254.
Botha, M., Dibb, B., & Frost, D. (2021). “It’s being a part of a grand tradition, a grand counter-culture which involves communities”: A qualitative investigation of autistic community connectedness.
Broder-Fingert, S., Mateo, C. M., & Zuckerman, K. E. (2020). Structural racism and autism. Pediatrics, 146(3).
Giwa Onaiwu, M. (2020). “They Don’t Know, Don’t Show, or Don’t Care”: Autism’s White Privilege Problem.
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: In the beginning there was trauma. Emergentdivergence.com
Munday, K (2021) Teenage, Queer and Autistic: Living in Two Closets. AIM for the Rainbow. Rainbowaim.com
Silberman, S. (2015) The forgotten history of autism. Ted Talk. Ted.com
Thompson, T., Caruso, M., & Ellerbeck, K. (2003). Sex matters in autism and other developmental disabilities. Journal of Learning Disabilities, 7(4), 345-362.
Walker, N., & Raymaker, D. M. (2021). Toward a Neuroqueer Future: An Interview with Nick Walker. Autism in Adulthood, 3(1), 5-10.
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