On Being an Autistic Autism Researcher

The first thing that strikes me about being an Autistic Autism researcher is how emotionally intense it can be. Despite each of us being uniquely individual, and living very different lives, the experiences of research participants often resonate with my own. Sometimes what we have in common relates to bullying, exploitation, and abuse, which can stir up anger, sorrow, and trauma. The connection between us can also be through Autistic joy, intense interests, sensory satisfaction, or particular ways of seeing the world. And sometimes it is about solidarity and a shared commitment to social justice and human rights, the desire to make things better for Autistic people, including those not born yet, whose existence is threatened as gene-editing programmes threaten to root out Autism.

For me involvement in Autism research is a form of activism. It can be a hazardous enterprise, given how many toxic studies are being done on (not by, with, or for) Autistic people. Whenever I research a new topic, I have to review the literature, which takes me into some murky territory. What some non-autistic researchers say about us can be incredibly damaging. Perhaps they assume we’re not part of their audience, or maybe they don’t care what impact their words have. When I was seven years old, I read a book about a child who was granted a wish. She wanted to know what other people thought of her. As soon as she found out she tried to reverse her wish, but she couldn’t. It is difficult to unknow the damaging things we read about ourselves as Autistic people, without feeling diminished by them. We have to expose ourselves to some toxic research in order to appraise it, and it’s difficult not to be overwhelmed and upset by misinformation.

A substantial proportion of Autism research is quite shoddy. Instead of properly investigating the ways in which autistic people experience the world, some non-autistic researchers simply impose their own frameworks and interpretations. All too often poorly produced research findings go unchallenged and get cemented into the mythology surrounding Autism and Autistic people. Our intolerance of inaccuracy, dishonesty, and dissembling can make this particularly painful. The misattribution of negative characteristics stigmatises us and undermines our identity by portraying us as flawed and ‘other’. Co-production should be standard if Autistic-led research isn’t possible and Autistic people should always be involved in setting the research agenda, and contributing to everything that follows.

Research findings should translate into policy and practice and improve Autistic people’s lives, but the extent to which this happens is extremely limited. Most Autism research has no useful real-world applications because we don’t get to determine funding allocations, or design studies. I lived most of my life pre-Autism assessment as an ‘undercover Autistic’, in places where it was assumed I was ‘neurotypical’. People’s guards were down, and their views were not censored like they would have been if they’d known I was Autistic. During my social work training, and in subsequent health and social care roles, Autism was barely mentioned. It got merged with mental health or learning disability, skipped in workshops, or tagged on as an afterthought. Practitioners generally adopted the premise that autistic people were damaged, defective, and difficult individuals. There was rarely any consideration of what it meant to be Autistic in a world so woefully un-adapted to our needs. Discourse was littered with cliches and platitudes, veering between inspiration and pity porn. The few services on offer tended towards patronising paternalism, ignoring autistic agency, self-determination, and human rights. We were mostly out of sight and out of mind. We still are.

Academic research is only one avenue for bringing about change. Our collective Autistic voice on social media has started shifting the balance of power in Autism research, policy, and practice. This is happening in Main Stream Media too. Autistic-authored narratives such as Holly Smale’s ‘Geek Girls’, and Elle McNicholl’s ‘A Kind of Spark’, with authentic portrayals of lived experience by Autistic actors, are leapfrogging traditional research-based evidence and taking concepts such as monotropism, double empathy, minority stress, epistemic injustice, and intersectionality straight to the mainstream. Newspaper articles and documentaries featuring investigative journalism are playing a part too, exposing the terrible harm being inflicted on Autistic people in institutional and community settings through abuse, neglect, and misdiagnosis. Change can’t come quickly enough given the scale of the suffering. As an Autistic activist and researcher I want to be part of a radical, revolutionary, ground-breaking transformation, which addresses diversity as well as inclusion.