Eugenics and Systematic Abuse
How the world hasn’t moved on for Autistics
Trigger warning. This blog contains references to the Holocaust, abuse, infanticide, suicide, hate speech and DNAR policies.
This has been a hard blog entry to write, but the content is relevant when considering the acceptance of autism and autistic individuals. This post has required research which has proven to be disturbing, as will become clear as you read through.
Hans Asperger
In the latest versions of both DSM and ICD, the diagnosis of “Asperger’s Syndrome” has been removed. There are two main reasons for this, firstly our understanding of the clinical description of “Autism” has been changed from a number of stand-alone disorders to an all-encompassing “spectrum”. Secondly, is the difficulty in separating the actions and beliefs of the man himself from his excellent contributions to our understanding of autism.
This history offers a dark underbelly of autism and one which we, unbelievably, still have to contend with in 2023. Eugenics.
Hans Asperger was an Austrian paediatrician and medical educator who is best known for his work on autism spectrum disorders. Born on February 18, 1906, he studied medicine at the University of Vienna and completed his doctoral thesis in 1931. Asperger was a pioneer in his field and was the first to describe the syndrome that previously carried his name.
Asperger’s work on autism spectrum disorders was ground-breaking, and it had a significant impact on the way autism is understood and treated today. His research was based on his observations of children with what he called “autistic psychopathy” or “autistic personality disorder” who exhibited unique traits, such as social isolation, impaired communication, and restricted interests. He published several articles and delivered lectures on the subject, and his work was highly regarded by his peers.
Later, this condition was renamed “Asperger’s syndrome” in his honour. Asperger’s work has also proved to be highly controversial, though.
In the early 1940s, Asperger was a member of the Nazi party and worked at the University of Vienna, which was known for its Nazi sympathies. He was also a member of several organizations that were affiliated with the Nazi party, including the Hitler Youth. Asperger was also, sadly, involved in the Nazi eugenics program, which saw people with disabilities as a burden on society, and believed that they threatened the purity of the Aryan race. The regime implemented a program called “Aktion T4” in 1939, which involved the mass killing of people with disabilities, including those with autism, initially through carbon monoxide poisoning and ultimately in gas chambers.
It is clear that Asperger’s work was influenced by the prevailing eugenic ideas of the time, and his legacy has been called into question as a result.
I’d like to say that indications of the use of eugenics stopped when the Nazis were defeated, sadly this isn’t the case.
Autism “Advocacy” Charities
Some people believe that the best way to address the challenges that come with autism, is to eliminate the condition altogether through genetic testing, including in pregnancy, and finding a “cure”. For me, this is a misguided approach that ignores the complex realities of autism and the lived experiences of autistic people.
One of the worst aspects of this, currently, are some of the autism “advocacy” charities. There are two specifically — Autism Speaks (USA) and Autistica (UK) — who are highly controversial amongst the autistic community.
Firstly, Autism Speaks. They are a US based charity originally built off the idea that vaccines cause autism (Spoiler: they don’t). The ongoing controversy stems from the organization’s approach to autism, which many individuals and other advocacy groups view as misguided and harmful.
One of the main criticisms of Autism Speaks is their focus on finding a cure for autism and their funding of genome projects. This approach is seen as problematic because autistic individuals often state that they do not see their autism as a disease or an illness that needs to be cured or eradicated. Additionally, Autism Speaks use of fear-mongering tactics in its advertising campaigns. These paint a negative picture of autism and perpetuate harmful stereotypes.
Example here: Trigger Warning, contains extreme ableist hate towards autistic individuals: “I am Autism”
At one point Autism Speaks had a UK arm — now known as Autistica — but Autistica distanced themselves in 2010. One of the main areas of controversy surrounding Autistica is the same as Autism Speaks — their approach to research. The charity has been accused of focusing too heavily on finding a cure for autism, rather than on understanding and supporting those who have the condition.
Another area of concern for some is the way that Autistica has been funded in the past. The charity has received significant donations from pharmaceutical companies, and worryingly, from a charitable foundation whose founder (and the original founder of Autistica) has previously claimed that their lives were “poisoned by autism for 35 years” and has publicly revealed, in their 2014 autobiography, a fantasy of murdering their own autistic child.
Despite these criticisms, both charities also provide some support to many families and individuals affected by autism. However, it is clear that they both need to address the concerns that have been raised if they want to maintain the trust and support of the wider autism community.
Covid-19 Pandemic
The parliamentary Health and Social Care and Science and Technology Committee “Coronavirus: lessons learned to date” report and the Care Quality Commission “Review of Do Not Attempt Cardiopulmonary Resuscitation decisions during the COVID-19 pandemic” both raised concerns that there had been use of blanket Do Not Attempt Resuscitation (DNAR) policies during the second Covid wave. The parliamentary committee also found that people with disabilities (including autism) also suffered “disproportionately high mortality rates” and that these policies had “had caused potentially avoidable deaths last year”.
It is worth bearing in mind that such blanket policies were against national guidance and that the Department of Health and Social Care have said: “It is completely unacceptable for ‘do not attempt CPR’ decisions to be applied in a blanket fashion to any group of people”.
However, evidence from the Office of National Statistics and Public Health England also showed that five weeks into the third lockdown, Covid-accounted for 65% of deaths of people with learning disabilities whilst the rate for the general population was 39%, and that younger people with learning disabilities aged 18 to 34 were 30 times more likely to die of Covid than others the same age. Research carried out by the University of Bristol also found that 14% of Covid deaths (in their sample) were autistic individuals, noting that between 1–2% of the population is believed to be autistic.
Addendum
I draft these blog entries well in advance of when I plan to post. That way I can edit and revise to my heart’s content. This time though it has allowed me to include something topical.
Last Friday saw a heart-breaking Dispatches programme on Channel 4 which revealed a system of poor treatment and abuse of autistics in mental health inpatient facilities. The programme showed that their autism was often ignored and sometimes intentionally used as a way of punishing them.
Friday’s programme prompted this statement from the National Autistic Society. Worryingly, whilst searching for that statement, I also found this one from less than six months ago regarding a similar Dispatches programme.
I’d like to say I was shocked, but it’s depressingly consistent.
Autistic people face significant barriers to inclusion and acceptance in society already, from stigma and discrimination to inadequate support and services. There has been a long history of abuse and neglect, sadly there are numerous other examples that I could have used including the issues leading up to the investigation of care provided at Winterbourne View Hospital.
Many autistic individuals would rather that effort and funding was now put into building a world where autistic people are valued, included, and accepted in all aspects of life.
