It’s a debate that has been going on for decades, more or less since autism has been described as a spectrum. This debate has recently come up again since a recent article was posted about the Autism Europe conference earlier this month ‘It’s time to embrace ‘profound autism’
However, subgrouping can lead down a dangerous path, and why I’m ultimately against subgrouping of autistic people.
But why is subgrouping dangerous?
We will have to go back to a dark place in history to reveal the dangers of subgrouping autistic people. In 1940s Vienna, some disabled children with high support needs were sent to ‘Spiegelgrund’ and died. Children who were disabled, but could have some form of use for the Nazi state at the time were allowed to survive.
So fundamentally disabled children were separated into two groups ‘useful’ and ‘not useful’ which is comparable to the terms often used today ‘High functioning’ and ‘low functioning’, except 80 years ago, labels like these determined if you lived or died.
When I was in Poland a few weeks ago for the Autism Europe conference, I also visited Auschwitz, which was a grim reminder of what the Nazis did to disabled people. In the Auschwitz museum, they had one room full of thousands of walking sticks, false legs, and other mobility aids that were taken off disabled people, before they were gassed to death on arrival at Auschwitz as they were deemed unable to work.
Conversations about subgrouping of autistic and disabled people hits differently after visiting Auschwitz. I was aware of the history of functioning labels being used to determine which disabled people were seen as “useful”, but seeing how it was used in the holocaust in the place it took place certainly affects your perspective on this matter.
Links for more information about this history
https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0208-6
https://amp.theguardian.com/world/2018/apr/19/hans-asperger-aided-and-supported-nazi-programme-study-says
https://www.hmd.org.uk/learn-about-the-holocaust-and-genocides/nazi-persecution/disabled-people/
Other common critiques of subgrouping or functioning labels include; people labeled as ‘high functioning’ not getting their needs met as they are viewed as needing no support. Whereas many people labeled as ‘low functioning’ or more recently ‘profoundly autistic’ can receive horrific treatment or are underestimated in their strengths. Furthermore, some autistic people experience fluctuating capacity meaning that a person’s ability or capacity to do certain tasks will change frequently, meaning functioning labels will not describe their reality.
What are the alternatives?
With more people starting to recognise the need to move away from functioning labels, many don’t know what we should move towards. Increasingly people are talking about support needs. People’s needs can vary throughout their life (and even change daily), but ultimately the most important thing is that people’s needs are being met, respected, and that they have every opportunity to thrive. Identifying needs often looks at
- A person’s strengths.
- What makes them happy.
- Challenges they may experience
- Areas of support they may need.
Ann Memmot talks about this more in her recent blog post linked below, and what this can look like in practice.
https://annsautism.blogspot.com/2022/10/i-am-not-fan-of-creating-profound.html
I know my stance on subgrouping will piss some people off, but too bad. In online debates about this topic we often forget and need to be reminded of the sinister history behind functioning labels and subgrouping.
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