Defining Autism: A History of Exclusion and Erasure

Grunya Sukhareva, Hans Asperger, and Autism Speaks

Photo by Todd Quackenbush on Unsplash

Please be aware this article discusses difficult topics such as eugenics, abuse of disabled individuals, genocide, behaviourism, and mental illness.

If any of the listed warnings may negatively affect your well-being, you are free to not read this article, or if you start reading and find it difficult to continue, you can stop and close the article.

Grunya Sukhareva

Grunya Sukhareva, a Jewish woman, first described what we now know as Autism Spectrum Disorder, nearly two decades prior to Hans Asperger.

Sukhareva published “more than 150 papers, six monographs, and several textbooks on topics as diverse as intellectual disability, schizophrenia, and multiple personality disorder, among other conditions.”

During World War II, Sukhareva was evacuated to Tomsk, alongside the staff of Moscow’s Institute of Psychiatry where she continued her work and published several studies on “post-traumatic disorders and other psychiatric implications of warfare.” One such paper was titled Psychologic Disturbances in Children during War published in English in 1947.

Sukhareva on Autism

Sukhareva worked, at first, with six boys, and published a paper in Russian in 1925 (and then in German in 1926) on their shared features. However, she didn’t call it autism. Sukhareva, at the time, labelled it ‘schizoid psychopathy.’

It was characterized by a…

• Lack of facial expressiveness

• Isolation and lack of social interaction

• Odd and socially inappropriate behaviour

She also described a ‘tendency towards automatism’:

• Stereotypic behaviours and speech

• Obsessive interests

• Disliking interruptions

• Routine and predictability

She also noted some children were “of normal or superior intelligence, were sensitive to noise and smell, and were sometimes musically gifted.”

The observation of sensory sensitivities is quite impressive considering no such criteria entered the diagnostic manual until 2013. This is, in part, because of Temple Grandin who helped bring more awareness to that aspect of the autistic experience.

Sukhareva on Autism in Girls

In a paper titled G. E. Sukhareva's Place in The History of Autism Research: Context, Reception, Translation (2019), Charlotte Simmonds recognizes that “Sukhareva seems to have been the only person to give a detailed description of the syndrome’s presentation in girls and its sex differences.” Indeed, the paper offers a translation of Sukhareva’s reports of multiple female patients.

An excerpt from the first case of a 15-year-old girl reads as follows:

The girl developed normally. Strong-willed, stubborn, markedly “individualistic” from an early age. Over the years, her idiosyncrasies have become increasingly prominent: on the one hand—her tendency towards autistic responses: introversion, reticence, and little sociability; on the other hand—the contrastive nature of her emotional personality. Despite the emotional coldness and inertia of the affective responses, there is great sensitivity and tactfulness in understanding others’ experiences. Heightened impressionability when assessing the behaviour of those around her in relation to herself. Her awareness of her own inferiority with her high self-consciousness often affects a fearful underlying emotional tone.

I’d like to highlight some key points from this paragraph. Firstly, there is her description of a tendency towards “introversion, reticence, and little sociability; on the other hand— the contrastive nature of her emotional personality.”

Long before Asperger, or anyone else for that matter, Sukhareva describes the typical introversion present in many autistics, but takes it one step further and notes her patient’s emotional personality. The case also shares a quote from the mother and how the patient cared deeply for her when she was ill, like no other member of the family.

Sukhareva continues, “There is great sensitivity and tactfulness in understanding others’ experiences.” Again, by studying how autism presents itself in girls, specifically, Sukhareva was able to observe and report on the differences in presentation between the sexes. One of the key differences that autistic women recognize about themselves today, is how they are more sensitive to others' emotions and needs. This is partly due to the gendered socialization of girls versus boys, but may also have an answer in autism.

Hans Asperger

Hans Asperger is more often credited with defining and characterizing autism, specifically Asperger’s Syndrome, which until 2013 remained a separate diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM). Medical professionals saw little reason to continue to separate the diagnosis from an autistic one.

The basis of Asperger’s Syndrome divided autistic individuals into two categories, low-functioning and high-functioning. High-functioning autistic’s were deemed more acceptable to society. If the premise of these categories is not abhorrent enough, Herwig Czech published a paper in 2018 after researching Asperger’s clinical records and found “a Nazi Party file that vouched for Asperger’s loyalty even though he was not a member.”

For years, many upheld the assumption that Asperger was not at all associated with the Nazi party in Germany. Czech was quick to discover this was not the case. In his paper, he continues with, “Asperger joined several organizations affiliated with the NSDAP, publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child ‘euthanasia’ program.”

This ‘euthanasia’ program took place at Am Spiegelgrund, which was a children's clinic in Vienna during World War II, where 789 patients were murdered under child euthanasia in Nazi Germany. In 1942, Asperger was tasked with screening over 200 children with mental disabilities and the commission’s mandate was to “categorize the children according to their intellectual abilities and prognoses and to define a residual group of ‘uneducable’ children.” Thirty-five were placed in this group and later died at this facility.

With respect to those diagnosed with Asperger’s (who have a right to use whatever label they identify the most with) it has become clear that moving forward, Hans Asperger should not continue to be applauded for his contributions to autism. He was greatly associated with the Nazi regime and complicit in its actions.

Instead of defending his patients and seeking to diversify his research as Sukhareva did, Asperger doubled down and used far more negative terms to describe his patients, sending them to ‘euthanasia’ facilities and other institutions where they were treated harshly.

Photo by Sumner Mahaffey on Unsplash

Behaviourism and ABA Therapy

Given Asperger’s high and low-functioning labels, and what happened to the children he diagnosed as low-functioning, it is safe to label such practices as eugenics. What does this have to do with ABA therapy?

Well, Applied Behaviour Analysis therapy, or ABA, is rooted in behaviourism, “Dr. John B. Watson, a pioneering psychologist, popularized the theory of behaviourism in 1913.”

But, what is behaviourism?

Behaviourism is a systematic approach to understanding the behaviour of humans and other animals. It assumes that behaviour is either a reflex elicited by the pairing of certain stimuli in the environment, or a consequence of that individual's history, including reinforcement and punishment contingencies, together with the individual's current motivational state and controlling stimuli. Although behaviourists generally accept the important role of heredity in determining behaviour, they focus primarily on environmental events. The cognitive revolution of the late 20th century largely replaced behaviorism as an explanatory theory with cognitive psychology, which unlike behaviorism views internal mental states as explanations for observable behavior.

I think of early behaviourism as a step up from eugenics, as in, when it became too controversial to outright kill “unwanted” individuals from the gene pool, people turned to behavioural therapies to force them to assimilate into society.

While behaviourism is not intrinsically harmful—especially now as it has been largely replaced with cognitive psychology—in practice, it can have costly consequences, often to the most vulnerable populations like high-support-needs autistic children.*

*I do not intend to speak for or over high-support-needs (HSN) autistics, no matter their age. Throughout my research for this article, I did find many instances in which parents and caregivers of HSN autistic children, as young as three years old and sometimes nonverbal, placed them in ABA therapy.

Behavioural therapy can be helpful, I will not negate that. Helping autistic children learn basic developmental skills is absolutely necessary. Autism is a developmental disability and many autistic children develop at a slower rate than their peers. The issue, for me, arises when the therapy moves beyond developmental skills and into controlling behaviour. This includes forcing eye contact, punishing stimming, and generally disregarding the autonomy of the patient.

In the medical community, ABA is still considered the ‘golden standard.’ Despite knowing its origins in behaviourism and the idea that the behaviour of someone is more important and worth studying than their thoughts and feelings.

Autism is primarily an internal, invisible disability, but the diagnostic criteria focus mainly on the outward behaviours and “how much of a problem they are” for others. It’s characterized by deficits in social-emotional reciprocity and restricted, repetitive patterns of behaviour. Autism is characterized by its observable traits, which seems odd given its neurological origins.

Our brains are wired differently than is considered ‘typical,’ and the wiring of our brains impacts how we perceive, interpret, and experience the world. Our observable behaviours are merely external reactions to that world. If you happen to be high-masking, like myself, those same reactions are held back in an effort to appear “normal.”

My point is that for a disability where the primary therapy is rooted in behaviourism and focuses on changing behaviours, it seems contradictory that it is, in fact, a much more internal experience influenced by our thoughts and feelings.

The Problem with ABA Therapy

In all honesty, I had a difficult time finding research that took an opposing view of ABA therapy. While the therapy itself is not “bad,” it can be misused by individual professionals and organizations in practice. I found this article on red flags to watch out for in ABA providers.

Then, I turned to primary sources. I sought out personal stories and lived experiences of actually autistic people and their parents/caregivers/etc.

One autistic person had a positive experience with ABA and thought it really helped them as a child. Mitchell shares in this positive experience.

I want to make it clear that I am not against ABA specifically, but the therapy has gained a negative connotation within the autistic community and not without reason. While other therapies exist, ABA is still the first one suggested by doctors and medical professionals, it is the one parents and caregivers recommend to each other. I wonder, and worry, if this is happening without being properly informed that some ABA therapists will do more harm than good.

Below I share some self-reported, anonymous, stories from a blog post published in 2019. These stories are from parents, therapists, family members, and autistic individuals.

“ABA was presented to me as “parent training” and I was several sessions in before I realized it was ABA, we were working specifically on toileting, and the method was so bizarre to me, that there was a timetable that increased demand to be seated on the toilet more and more frequently until she used it, they tried to tell me she couldn’t have m&ms anymore unless she successfully toilets (m&ms were her favourite thing in the world, so we did not comply with that for long) in the end it left her terrified of the process of toilet training and put us further behind. Not to mention that it only punished and rewarded, it did not take into account that sensory deficits are to blame for her delayed toileting, not stubborn behaviour.”

“When our child was diagnosed at age 3 (more than a decade ago), we were told that the optimal outcome would be ‘indistinguishable from their peers.’ For 2 years leading up to the start of school, and for a good portion of our child’s elementary/primary school experience, they were subjected to ABA therapy or behavioural management based on ABA principles. Our child is now a young teen with a range of mental health challenges, and they feel very strongly that ABA sent them messages of ‘you are less than.’”

“I was an ABA therapist for a short time and it was definitely abusive. When my bosses found out I was autistic they said the company never had an autistic employee, and played an autism speaks video at the next staff meeting about how horrible it is to have autistic children. It felt like they were trying to get me to quit between that and refusing my reasonable accommodation.”

“Simply put, ABA was structured to destroy my self-confidence and agency for not following arbitrary cultural rules. Had I been allowed to interact on my own terms, I would simply have been able to learn, and I still hold that I was never truly disrespectful, just not obsequious, but unfortunately the people around me growing up felt that they could enact any harm on me to try to change this, regardless of where I actually stood.”

“Experienced torture and shutdown due to ABA can not understand my own needs and am unable to ask for basic things to survive from being taught my needs won’t matter. I cannot communicate effectively and have not learnt any skills to live independently. I don’t know who I am as I was always taught that whatever I might be was wrong. It’s a struggle to try and learn who I am at 40.”

Autism Speaks

On January 31st, 2025, Autism Speaks announced it would end its Canadian operations according to this CBC article. The article continues stating that despite being the largest autism organization in the United States, it has faced years of criticism for focusing on “curing” autism and “eliminating behaviours” associated with it.

CBC also cites the MSSNG Project where several organizations, including Autism Speaks, “collected DNA from more than 12,000 children with autism for use in a shared database to create a genome sequencing database on autism.” Autistic Canadians were obviously worried and expressed concern that the goal was to “identify, and ultimately eliminate an ‘autism gene,’ saying the research was driven by eugenic ideas.”

The movement against Autism Speaks began in 2009 with the release of the "I Am Autism," ad. The Autistic Self-Advocacy Network (ASAN) shares the video’s transcript in full. While the organization has since apologized the damage may have already been done.

ASAN also shares important information on the Autism Speaks 2020 budget in this PDF flyer, noting that, “Only 1% of Autism Speaks’ budget goes towards the ‘Family Service’ grants that are the organization’s means of funding services.” Along with its support of ABA therapy, Autism Speaks has remained a controversial organization and is generally considered a hate group within the autistic community.

I knew this going into my autism assessment, almost four years ago now, and I had to politely let the psychologist know that Autism Speaks is widely considered a hate group and it’s best not to recommend their services to present and future clients.

Final Thoughts

First, I want to thank anyone who made it to the end of this article, I know it was a long one. Second, while comments are appreciated, I think taking a moment to properly digest all the information I shared is a good idea. Lastly, if there are any facts presented in this article that are wrong or misinformed, please let me know and provide sources so that I may learn and correct the mistake. I spent days researching and writing this article, but I am human and I cannot possibly get everything right on the first try.