Originally published on theconversation.com
Research has tremendous potential to help the estimated 93,000 autistic New Zealanders live the lives they want to live. The trouble is, funding for autism research is currently skewed away from the areas autistic people themselves say would be most useful.
When asked what future autism research should be prioritised, autistic people and autism communities often point to the need for support and services in education, health and well-being across all ages.
Yet we found a staggering two-thirds of funding for autism research awarded in Aotearoa New Zealand has been invested in projects that seek to understand biological differences associated with autism.
By contrast, 32% of total funding was invested in research into support for autistic people. There was no investment in research aimed at maximising the quality of life of autistic people by addressing the accessibility and quality of services, or into the needs of autistic people as they age.
Within Aotearoa there are multiple perspectives on autism. According to a Western viewpoint, it’s a neuro-developmental condition characterised by differences in the way people think, how they perceive the world and how they process social information, including communication and interaction with others. Indigenous understandings emphasise the valuing of such differences within the community.
A medicalised view that sees autism as a deficit may have contributed to a dominance of biological research. But looking through the window of biology gives us only one perspective on the vulnerabilities autistic people may face.
This is out of step with the preferences autistic people actually describe, yet the pattern is largely similar across Western countries.
In 2019, the International Autism Coordinating Committee published a report looking at autism research funding in the UK, Canada, US and Australia. Across all countries, the largest proportion of funding was allocated to basic science research, with 36% invested in biological research and 23% invested in causes and risk factors such as genetics and epigenetics. Only 16% was invested in supports, and 5% in services.
Support in daily life
For autism research to be more relevant to the autistic community, it must realign with their own priorities. To that end, an international movement toward genuine partnership in autism research has evolved. Autistic people are being included in the research process, from generating ideas through to carrying out the research and sharing the findings.
In the UK and Australia, researchers and autistic people have co-produced autism research priorities driven by community perspectives. The highest-rated priorities included more applied research, which seeks to find solutions to practical challenges autistic people face.
For example, research can address problems in education and the workplace, and how more inclusive spaces and practices might enable autistic people to be accepted and valued.
Research that aims to find ways of improving public knowledge and acceptance of autism could help address discrimination and stigma. Such a neurodiversity perspective frames neurological differences not as deficits but as natural variations of human experience.
Away from tokenism
To establish the research priorities of the autistic community in Aotearoa New Zealand, the Health Research Council has funded a project I’ve been leading throughout 2021, involving a team of autistic and non-autistic researchers.
From a series of community focus groups (including parents and whānau, Māori, healthcare and education practitioners, Pacific peoples and other researchers) we designed an online survey that is now open to the autism community.
We are also interviewing autistic young people to find out what they think. We plan to share all findings with the community, researchers and funders next year.
My hope is that this partnership project can inform the future direction of autism research in Aotearoa New Zealand – both in terms of the questions we ask and the way we try to answer them.
By listening to the preferences and priorities of the autistic community we hope to go beyond the tokenistic towards a genuine inclusiveness in research. Autistic partnership in the research moves us away from “research on” to “research with”, and can directly tackle the problems created by the present lack of balance in autism research.
Lisa Marie Emerson receives funding from the Health Research Council, Cure Kids and A Better Start.