At the end of October, the Neurodiversity Centre shared a call for participation in an autism study on their Facebook page. “Please note that the study is not run by the Neurodiversity Centre,” they added, “we are serving in an awareness raising capacity.” The study was from Kidslab, a research laboratory at the University of Cape Town led by Dr. Colleen O’Ryan. Several people commented that the communiqué had some parallels to the Spectrum 10K messaging, albeit not aimed at such a wide audience.
As an autistic academic and advocate working at the same university, Richard Higgs undertook to contact the study leader for clarification on some of the concerns. A few hours later, he shared the following follow-up letter, which he wrote to Dr. O’Ryan. We share his letter here with his permission.
Dear Dr O’Ryan
I am approaching you as a colleague, a fellow researcher and educator, a member of the Humanities Faculty Research Ethics Committee, and an autistic adult.
The autistic community in Cape Town noted with interest your laboratory’s call for participation in an Autism Study that is requesting participation from boys aged 7-17 with an ASD diagnosis. There has been a fair amount of discussion on social media about this study in autism groups, and many of us have questions.
As the “FAQ sheet” mentioned is not linked anywhere, I joined the Lab’s Facebook group and posted some of the autistic community’s questions there. I also highlighted some concerns that we have about the study, particularly in relation to the Spectrum 10K study in the UK that faced considerable backlash from the autistic community for ethical reasons. I additionally highlighted the problematic relationship that your laboratory has with Autism $peaks, an organisation that is reviled by autistic people, and justifiably so.
I discovered that, no doubt as a result of raising these ethical issues and asking questions about the study, I have been banned from the Facebook group.
I wish to express my disgust at the unprofessional and uncollegial behaviour of whoever in your team is responsible for social media. If your research team refuses to engage with the genuine concerns of autistic people and silences us when we raise concerns, that is not only unbecoming of the academic ethics of challenging the foundations of knowledge, but is also against general research ethics as well as UCT’s commitment to inclusivity and diversity. A clear and motivated response to the questions and concerns I raised would have been much more constructive than an outright deletion. The continued reluctance (read: refusal) of autism researchers in this country to engage with autistic adults about research priorities and ethical concerns is regressive and ableist. Autistic people are not there to be exploited for researchers’ glory or by unscrupulous charities. We have a voice; we are tired of being silenced and spoken over, and we are angry. I believe that we have a right to demand compassion for ourselves and for our fellow autistics who are more vulnerable than we are.
Nihil de nobis, sine nobis.
This is not the first time that Kidslab have deliberately blocked communications with autistic people for asking questions. It comes at a time that clear science communication and research transparency are more important than ever.