Autistic voices speak out about “concerning” new research study
We’ve come a long way from the days of unethical experimentation on – and routine institutionalisation of – autistic people, but critics of the Spectrum10K study fear it has murky intentions, with some even calling it “eugenicist” in nature. Tannice Hemming, who was diagnosed with autism in 2018, investigates.
I first became aware of Spectrum10K when browsing Facebook and saw an advert for it, fronted by Chris Packham, one of the handful of “out and proud” autistic celebrities. Others include actors Anthony Hopkins and Dan Ackroyd as well as climate campaigner Greta Thunberg and Tesla entrepreneur Elon Musk.
Spectrum 10K wants to recruit 10,000 autistic individuals, they say, to help “investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families.”
Run by researchers at the University of Cambridge, Wellcome Sanger Institute and University of California Los Angeles (UCLA), they ask participants to complete a survey as well as provide a DNA sample. Indeed, it is this last part that is giving many autistic people cause for concern.
Ethics and eugenics
Harry, who is 31 and works in IT was diagnosed with autism at the age of 31 and said he had spent years struggling with his mental health. He heard about the project through Twitter, where there are many autistic people openly airing their concerns and asking questions about the ethical implications the study has thrown up.
The main concerns Harry has about the study involve data privacy and how sensitive data given by autistic individuals will be handled. He’s concerned that “sensitive data could later be used (weaponised) against [autistic people]. Although the researchers have said that the aim of the study is not to determine causes for autism, Harry is sceptical and says it “reeks of eugenics”. He also said that he felt that the social media channels were “not addressing any concerns” and just “trying to prove they mean well without questioning what they’re doing at all”. Though he agrees that studying autism genetics is an interesting and valid field, he highlighted the fact the small print said they “might potentially try to use data to work on diagnostic criteria”, something he pointed at as a red flag.
Problematic theories
Other critics of the study point to one of the leading researchers, Sir Simon Baron-Cohen, who they see as just one of the problematic figures behind the research. Sir Baron-Cohen, who was knighted in the 2021 New Year Honours for services to autistic people, is a Professor in the Departments of Psychology and Psychiatry University of Cambridge and Fellow at Trinity College, Cambridge. The mission of the research department is to “understand the biomedical causes of autism and to evaluate promising interventions for autistic people”. His “extreme male brain theory” and previous assertions about autistic people’s ability to empathise (Theory of Mind) has previously come under fire by autistic self-advocates, who say his theory is damaging to public perception of autistic people, dehumanising them. Feminist scientists have called his “empathizing-systemising theory” “neurotrash and “neurosexist” and others suggest his theories have contributed to the imbalance of diagnoses – males are far more likely than females to receive a diagnosis when clinicians use his autism-spectrum quotient.
Indeed, Baron-Cohen has addressed the thorny issue of genetics and autism research before. Within a piece for Spectrum News https://www.spectrumnews.org/features/deep-dive/search-truce-autism-wars/ on the “autism wars” – disagreements over neurodiversity, difference and disability – Baron-Cohen is quoted, agreeing that genetics research poses issues, pointing to Nazi eugenics programmes when he says “[t]here’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics”. Indeed, in 2009, he wrote a piece for BBC News discussing how prenatal testing for autism might “inadvertently ‘cure’ not just autism but the associated talents that are not in need of treatment.” http://news.bbc.co.uk/1/hi/health/7736196.stm
Whilst Baron-Cohen has spent time in the past highlighting his concerns over prenatal testing, issues of eugenics and is seemingly against this, the study he is heading up specifically requests, in the consent form, that the DNA taken is used in further studies. You cannot take part in Spectrum10K without agreeing to this.
How can children understand future adult repercussions?
Spectrum10k are looking for children to be involved in the studies, too. Many critics have raised wholly valid concerns about this, asking how children aged 6 and up could possibly understand the potential repercussions and implications of giving their DNA data to researchers now as well as the future use of their data. Spectrum10k have answered this with “easy to read, age appropriate information sheets” and also point to “assent forms” for children. It’s impossible for children to understand this and it seems totally unethical to ask parents to give consent for their children’s data to be used in this way, let alone to be used for future studies.
The aim of the study is cited to help autistic people, improving their health and well-being. However, it’s not entirely clear how investigating the DNA of autistic individuals will achieve this goal. Something that is also lacking from the research panel is any actually autistic individuals – a group of people that would surely be a rich pool from which to draw some conclusions on how to improve the wellbeing and health of autistic individuals? Co-production with a sample of autistic individuals seems to be one way of generating results for a study with this aim seems a pretty easy win.
Looking deeper into the team involved, UCLA’s Daniel Geschwind, who is credited on Spectrum10k’s website as Co-Principal Investigator of Spectrum 10K, previously worked for nonprofit ‘Cure Autism Now’, where he founded the Autism Genetic Resource Exchange (AGRE). Clara Lajonchere, who is Vice President of Clinical Programs at Autism Speaks, says he is a “visionary”, which will strike fear into the hearts of many who know how Autism Speaks, founded in 2005, operates – and how they perpetuate harmful stereotypes and fear monger about autism. Autistic author, John Elder Robison has described Autism Speaks as “the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.” According to many critics, very little money raised by Autism Speaks goes to autistic people and their families. AutisticAdvocacy.org says “Autism Speaks’ fundraising strategies promote fear, stigma and prejudice against autistic people” and say portrayals of autistic people within advertising are “mysterious and frightening”, which “increase[s] stigma” and are “barriers to the inclusion of autistic people in our communities”. Daniel Geschwind’s involvement in Spectrum10k is very worrying indeed, especially as ‘Cure Autism Now’ was made part of Autism Speaks in 2007.
Nothing about us, without us
Dave, another autistic adult I spoke to about the project, shares Harry’s concerns but says “I think the survey part of the study could have some merit as they’re looking for so many actually autistic people and I’m sure a lot of them would speak their minds on what would help us. I know I would certainly do my best to advocate in the survey but the fact that the DNA sample is compulsory means I’m absolutely not going to take the survey.”
In terms of where he thinks studies on autism should focus, Dave says “we need research conducted by fellow autistics to help us get by from day to day rather than what non-autistics either think would help us or want for their own convenience. Things like workplace autism training, sensory guidelines for shops and other public places and definitely more accessibility to diagnosis. There’s a lot that could be improved and it starts with including and listening to us… without an ulterior motive!”
Round-table discussion planned
Sunshine Support, an “award winning Special Education Needs consultancy” who “empower and advocate for parents and professionals who support children and people with SEND” are also concerned about the research. They have set up a free online “round-table” discussion to “open discussion and allow attendees to form an educated decision as to whether they take part in the research”. Planned for the 8th September, it’s an opportunity to clarify confusion. The discussion will by led by “well-informed Autistic Autism experts” to “dispel myths”.
https://www.eventbrite.co.uk/e/spectrum-10k-round-table-discussion-tickets-168568521987What’s clear is that the Spectrum10k team need to listen to the concerns of the Actually Autistic community and actually look to include various autistic adults in their team. Claiming to want to improve autistic individuals’ lives but ignoring their concerns is certainly not going to allay fears of this research contributing to prenatal screening efforts. Autistic people must be consulted and heeded if any research like this is to be successful.
Further reading
Other autistic voices speak out: