Today, 29 October 2021, autistic activists, including autistic researchers, are holding a protest in at Cambridge University, the home turf of Prof. Simon Baron-Cohen and the Spectrum 10K genomics project. The leaders of Spectrum 10K include the equally notorious Daniel Geschwind, who to this day promotes ABA, an abusive behaviourist intervention introduced decades ago at his university, and now the subject of a worldwide banning campaign by human rights activists.
Mary Doherty is an autistic doctor who describes herself as “periphperipherally associated with the biomedical autism research community, as a member of the AIMS-2-Trials Autism Representatives Steering Committee, and ECRAN, the associated early career researcher network”. The following extracts are from her article in Thinking Person’s Guide to Autism, published two days before the protest.
“The approach of setting a research agenda, then including autistic people in a tokenistic manner—as with AIMS-2-Trials A-Reps—is no longer sufficient,” writes Dr. Doherty. “The autistic community, including autistic researchers and scientists, must be involved at the highest levels when decisions are made regarding the autism research agenda. We cannot be kept busy with token consultations while the real decisions are made elsewhere.”
“The gulf between the biomedical research and the autistic communities is far deeper than realised by the research community. An apology is needed for past harms to our community by biomedical research, but perhaps this needs to start with exploring what those harms have been. As we see in non-pharmacological autism interventions, the harms may not be obvious to non-autistic people. For example, alongside financial costs, mental health issues for autistic people are often suggested as a target of biomedical autism research, without any appreciation that the current intervention and research agenda may in fact be exacerbating mental ill-health.”
“As a community, autistic people have documented our research priorities, and causes of autism or “cures” do not feature prominently. We want research that will directly and positively affect our lives. We recognise that biomedical researchers generally do not have the skills to conduct the type of research we want, but the skills they do have can potentially be used for our benefit. Genomics offers enormous potential for improving human health. Knowledge in this area is accelerating at an astonishing rate, with debates raging around the ethics of genome editing, and regulation urgently required to avoid discrimination against vulnerable groups.”
“Autistic people are a vulnerable community, and as stakeholders in this debate, we deserve full and transparent engagement. We cannot allow the scientific process to continue in a direction that results in elimination of other autistic people, only for researchers to express regret when the inevitable outcomes occur. Scientists may claim that regulation is the role of society, not science. Yet who guides society on such matters, if not scientists with knowledge of the field?”
Dr. Doherty’s critique of the Spectrum 10K project reiterates the problems raised by the Autistic Strategies Network over many years in respect of autism research in South Africa and the rest of the world, and more recently in respect of Spectrum 10K and its violation of the UN Convention on the Rights of People with Disabilities.
…the only way forward is absolute transparency, open debate, and a truly participatory approach to future research.Mary Doherty: Spectrum 10K and Cognitive Dissonance in Autism Research