When the term “social model of disability” was coined by British sociologist Mike Oliver in 1983, it helped form the premise of the incapacity rights movement.
To mark the birth of that movement, in addition to the thirtieth anniversary of the autistic rights movement, our latest report reflects on why it’s important that autistic persons are at all times on the centre of autism research.
During the Nineteen Eighties, the term “social model of disability” challenged how society largely regarded disability as a private tragedy. Disablement was seen as something that belonged to individual disabled people, with heavily medicalised personal “impairments”.
But Oliver argued that disablement got here from how society treated disabled people and from the systemic lack of equitable access. The social model of disability ultimately informed disability awareness and equality training.
Not long after, within the early Nineties, as people began accessing the web, autistic people began finding each other on chat boards and email lists.
Around the identical time, autobiographical texts written by autistic people began to be published online. They helped introduce the voices of autistic people to neurotypical people for the primary time. However, reflecting the attitude of that period, much of the tone of the writing conveyed the message that autism was a “tragedy” that needed to be mourned.
It was against this backdrop that the American autistic rights activist Jim Sinclair gave a seminal speech on the 1993 International Conference on Autism in Toronto, Canada. Addressing parents of autistic children, his “Don’t Mourn For Us” speech called for a move away from a parental perspective that “grieves” the disabled child. Instead, Sinclair advocated for an empowered, autistic perspective. The speech helped spur the autistic rights movement.
Autism research
Historically, autism research has been conducted by non-autistic researchers. The consequence of this has been a pathologising and sometimes dehumanising take on autism.
For example, in a single 2019 study, autistic people were found to be more generous. But as an alternative of seeing this as something that’s advantageous to society, the researchers interpreted the findings for example of how autistic people struggle to inform the difference between themselves and other people.
Likewise, despite the progress that has come from a shift towards a social model of disability, funding for research into autism still tends to be given to non-autistic researchers. This is commonly for research that doesn’t address the needs of autistic people or tackle our significant health and wellbeing inequities.
Even when the stated goals of research seem like about cultivating autistic wellbeing, there are sometimes glaring concerns. One example of this was the Spectrum 10K projectwhich was launched in 2021 by researchers on the University of Cambridge, the Wellcome Sanger Institute and the University of California Los Angeles.
The project planned to generate a big autism DNA database, which was something that alarmed many autistic people. It provoked protests over the potential for it to steer to eugenicswhere gene pools are altered in response to which persons are deemed to be superior or inferior. The study is currently pausedwith a long-awaited consultation report overdue.
In recent years, there was an increasing call for research that meaningfully involves autistic people in all stages of research, from design, through delivery to dissemination.
Collaboration
Building on this, our latest report describes how we’re working together as a mutually supportive, fully autistic team on the Autism: From Menstruation to Menopause project. This project was arrange to handle the knowledge gap about autistic reproductive experiences.
Our first task was to recruit an autistic community council. We desired to be certain that it included individuals who were often underrepresented in research. Once it had been established, the following step was for tutorial researchers and community council members to work together to develop accessible recruitment materials for our study’s 100 autistic participants.
Although it’s early days, we anticipate that our community council can have a vital role in helping us interpret our findings and in preparing our reports.
We aren’t suggesting that good autism research can’t be done by non-autistic researchers. But autistic people should at all times be involved in research in a meaningful way and ought to be listened to at every stage of a project. By doing that, researchers can avoid inadvertently doing research that’s either harmful to autistic people, or which misinterprets the findings.
