Trigger warning – This article discusses eugenics in relation to finding a “cure” for ableism.
This week, we saw the launch of Spectrum 10K – a project aiming to gain DNA samples from 10,000 autistic people and their families to examine our genetics, to see how our experiences “shape our wellbeing”. It aims to be the largest study done, but after its launch by celebrities such as Paddy McGuiness in the media completely uncriticised, it has quickly raised alarm bells across the autistic community.
Heading up the team of Spectrum 10K is Simon Baron-Cohen, who suggested the “male brain” theory of autism, now thought to have damaged the way that many academics and doctors view autism in girls.
It is aiming to look at genetic and environmental factors to see the impact on the wellbeing of autistic individuals, and is supposedly not at all looking for a cure, with the Autism Research Centre (ARC) “ethically opposed to any form of eugenics”. The study wants to look at comorbidities with autism, including anxiety, depression, and gastrointestinal conditions.
The research around gastrointestinal pain alone has been questioned, with it seeming to bring back the notion of Andrew Wakefield’s idea of “autistic enterocolitis” – the same academic who linked autism to the Measles, Mumps, and Rubella (MMR) vaccine, later retracted, though not before the damage had been done which we as a community still face today.
In his study on autistic enterocolitis, it was found that 8 of 11 children had “normal pathology” or non-specific colitis, not a specific inflammation associated with autism.
Similarly, it is difficult not to be skeptical about the need to look at genetic links of anxiety and depression with autism. Whilst there will be, of course, some who are pre-disposed to mental illness – as there would be amongst the allistic (non-autistic) community – it is also clear that when autistic people go undiagnosed and/or unsupported, they are more likely to experience mental health issues.
A huge amount of autistic people have spoken up since the launch on Tuesday, including the beginning of the hashtag “#StopSpectrum10K”. For many, including myself, we don’t believe our DNA is needed to look at our wellbeing – instead, we need to refocus research priorities away from genetics and look at genuine ways to support autistic people, and in turn their wellbeing.
There are plenty of issues that autistic people are constantly shouting about that need support – for example, the lack of funding for occupational therapy, or respite care for autistic people and their families.
Not only that, but we need support with things like employment, with just 22% of autistic people in paid work. We also desperately need to see the eradication of ableism within the education system, where so many end up in severe burnout, or aren’t supported to gain qualifications at all.
The autistic community has long been discussing the issues behind “functioning labels”. The idea of being “high functioning” completely ignores the needs of autistic people who may be able to work or talk, whilst “low functioning” is often used to write off those who need more support.
To many, this seems to be based on capitalism due to its basis in who can and can’t work. Whilst Spectrum 10K appears to not be using functioning labels, autistic people have been particularly concerned by one element of the introductory explainer video, which says “some may have learning difficulties whilst some… have talents” – making for an implication that those with learning difficulties cannot possibly be talented.
The issue has to be raised that even if this particular study is against eugenics if genes causing autism are discovered, there is nothing stopping future projects from taking part in such activities. Those who want to partake in those sorts of things will surely be able to find the research, even though Spectrum 10K says that groups will have to gain ethical approval to access data.
This is particularly concerning when the team admits that the committee to do this is yet to even be set up, and there is little notion of how many autistic people will sit on it. A primarily autistic-led committee seems unlikely, when their advisory panel is only made up of four autistic people out of eleven (assuming that the parents and clinicians aren’t autistic, which is heavily implied). It is also significantly concerning to see that co-leader Daniel Geschwind has been associated with a nonprofit called “Cure Autism Now”.
For many of us, this is not what we want. We don’t want to know the causes, nor do we want data available to get rid of our autism. There is nothing inherently wrong with being autistic, and with proper support and the breaking down of barriers, many more would be able to thrive.
It is an ableist society holding our wellbeing back, not our DNA. We need an increase in social care and education funding, we need post-diagnostic support, and we need doctors to actually understand autism as a condition when considering our other healthcare.
Autistic people need to be involved in this research properly, from the beginning and with our interests truly understood and at the heart.
I can imagine that there are plenty of families who will sign up for this because they don’t understand that autism isn’t the problem, the lack of support is.
When I was waiting to be diagnosed, I was placed on anti-depressants and ended up unnecessarily on a mental health unit. When I received my diagnosis, that was that, with a piece of paper signed off and little other help for me or my family.
There is nothing about that, that will be fixed with my saliva – instead, all I can imagine is instead companies trying to eradicate the condition that makes me who I am.
Ultimately, we desperately need research that will fix society, not autistic people. I won’t be participating in Spectrum 10K, and I would implore others to consider their involvement, too.
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