The last two weeks have been challenging and emotionally draining for the autistic community since the announcement of Spectrum 10K. There has been an intense backlash, and last night the lead researcher, Simon Baron-Cohen, released a statement claiming to address our concerns. So I’ve read through the statement, and here are my thoughts as one actually autistic person.
“We benefitted enormously during the design phase of the study from consultation with an advisory panel of autistic people and their families. We now want to co-design a wider consultation process with autistic people and their families to make sure that the views of the whole autistic community are gathered.”
My main critique here is why the focus is on autistic people and their families? If the study’s primary aim is to help autistic people, is the panel primarily comprised of autistic people? And if family members of autistic people are on the panel? Then what is their purpose? As autistic people’s views may differ from their caregivers and family members. So the real question is, whose priorities are being addressed in Spectrum 10K?
“We now want to co-design a wider consultation process with autistic people and their families to make sure that the views of the whole autistic community are gathered.”
It should have been standard from the beginning. Participatory autism research has been done before, with several guides on adopting participatory methods in future studies. There was no excuse for not having a wider consultation period to start with and using Participatory methods from the outset. Below are some examples.
- A critical reflection on the development of the Participatory Autism Research Collective (PARC)
- Making the future together: Shaping autism research through meaningful participation
- Improving research about us, with us: a draft framework for inclusive autism research
- Beyond tokenism: the participation of autistic people in autism research
- The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants
“In response to some of the concerns raised about genetics in autism research, we would like to clarify our values as a research team. We see autism itself as an example of neurodiversity in the population. However, many autistic people have co-occurring severe health conditions such as epilepsy and severe gastrointestinal pain that may need treatment. And many have co-occurring disabilities such as dyslexia, speaking few or no words, and learning difficulties that need support.”
Personal view here, but often a company values only serve PR purposes and are generally meaningless. So claiming to be advocating for neurodiversity is pointless if your research is not achieving this also. Especially when you considered that one of the researchers, Daniel Geschwind was part of Cure Autism Now. This seems to conflict with Spectrum 10k’s values…
As I said in my previous post, Why aren’t the researchers focusing on finding cures and treatments for the co-existing conditions rather than autism? As non-autistic people have these conditions too and I’m sure they would like treatments/cures., Why is autism being brought into it? Indeed, if you focus on curing epilepsy/gastrointestinal pain, these won’t be an issue for autistic people with these co-existing conditions anymore? The research aims still do not align with their desired outcomes.
I have several co-occurring disabilities, but I don’t see how studying my DNA will help with my dyslexia and ADHD? Simon raises this point but is not clearly stating why this is relevant, but I feel that it’s implied he wants treatments or cure for these conditions, considering how the sentence before is worded. Is Simon saying that only my dyslexia and ADHD needs to be cured and people with these conditions need to be prevented? That’s still eugenics. The vagueness of this point needs to be addressed.
“To reiterate, Spectrum 10K is not looking for a cure or eradication of autism. Spectrum 10K is anti-eugenics. To be precise, we do not work towards or advocate for termination of pregnancy in relation to a foetus who may later be diagnosed as autistic.”
If this comment is genuine, why is Daniel Geschwind still listed as the Co-Principal Investigator of Spectrum 10K? (who used to be part of Cure Autism Now) And also, why is Matthew Hurles still Head of Human Genetics who has stated online:
“Together we are investigating the genetic causes of developmental anomalies that are identified during prenatal ultrasound screening, with the aim of improving the prognostic information that can be provided to parents.”
Matthew’s professional goals seem clear to me.
Also, a question for Simon specifically, you claim that Spectrum 10K does not aim to develop prenatal screening. Then can you please explain why you made the comments below back in 2009 and how your position has changed?
“We are aware of and abhor the awful history of eugenics, including how science has been used to justify many atrocities globally.”
Then why is Spectrum 10K researching the genetic causes of autism, when the lead researcher has already acknowledge
When speaking about genetic and autism research. If spectrum 10K is anti eugenics, they wouldn’t be collecting 10,000 autistic people’s DNA, as they can’t guarantee that the data won’t be exploited in the future. To be anti-eugenics, you cannot enable future eugenists in any way, shape or form, even if it’s perceived as a low-risk today. History and Nazi Germany informs us of the consequences of eugenics. It is not ethical to collect our DNA in this way that future eugenists could use.
“Some of the genes linked to autism can also cause chronic physical health conditions such as severe gastrointestinal pain, epilepsy, extreme hypermobility leading to limb dislocation, and extreme painful sensory overload.
So, the key aim of Spectrum 10K is to understand the genetics of both autism and co-occurring chronic health conditions. This can help future research identify targeted treatments for and management of these co-occurring conditions in autistic people. Reducing physical pain and emotional distress associated with these conditions can improve wellbeing.”
Where is the evidence to back up this claim regarding the genes linked to autism and other conditions (as it’s a bold one)? Is this what autistic people with these conditions have told you they want? I would really like some more transparency around this point. Like I said before, Why aren’t the researchers focusing on finding cures and treatments for the co-existing conditions rather than autism? As non-autistic people have these conditions too and I’m sure they would like treatments/cures., Why is autism being brought into it? Indeed, if you focus on curing epilepsy/gastrointestinal pain, these won’t be an issue for autistic people with these co-existing conditions anymore?
The statement ends with
“Thank you to the many autistic people and their families who have already signed up to be part of this study. And thank you to the many autistic people who have voiced their concerns and provided feedback. We will continue to listen to and engage with the autistic community and we will provide more updates over the coming weeks.”
I’d like to know the statistics for autistic people who have signed up for Spectrum 10K compared to autistic people whose parents or carers have signed them up. Is it something autistic people want or not? The issues around informed consent have not been addressed, and I’m wondering how many people have consented to participate in Spectrum 10K?
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