Who takes part in autism research and whose voices are being heard?

Supervisor: Dr Umar Toseeb

A) Rationale for the project

Autism spectrum conditions are characterized by social and communication difficulties, repetitive behaviours, and high sensitivity to sensory stimulus (APA, 2013). In the UK, the prevalence of ASC is estimated at ~1 (Baird et al., 2006). The condition has a number of mental health correlates, which reduce the quality of life of those affected (Matson & Nebel-Schwalm, 2007).

There has been a great push towards involving the autistic community in research. For research to be conducted with autistic people rather than on autistic people. Funders expect the autistic community to have been involved in the planning of research. Some academic journals now require explicit statements about how the autistic community were involved in the reported research. This can include autistic people helping to identify areas of need, co-designing research questions, helping to interpret findings, or autistic people leading research projects. But the autistic community is so diverse - are everyone’s voices being heard?

A common criticism of psychological research is that the participants are not representative of society at large. A large proportion of existing published autism research has been conducted by White middle class academics on/with White middle class autistic individuals. Those who are struggling the most might not have time to spare to consult on the co-production of research that is unlikely to affect them directly. Some communities might be skeptical of the researchers and therefore not engage. It may well be that a vocal minority of autistic individuals are dominating the discourse. Those who shout the loudest have their needs met. But if we are serious about ensuring that the voices of the entire spectrum of autistic community are heard, we need to know who is currently being heard and who is not.

B) References that should be read

Pickard, H., Pellicano, E., den Houting, J., & Crane, L. (2021). Participatory autism research: Early career and established researchers’ views and experiences. Autism. https://doi.org/10.1177/13623613211019594

C) Research aims and questions

The proposed project aims to address this gap in knowledge. Applicants might want to consider some of the following research questions:

What is the ability and demographic profile of autistic participants who take part in quantitative and/or qualitative autism research?
What are the ethnoracial and profiles of authors of autism research? E.g., ethnoracial, lived experience of autism
What requirements do funders/academic journals have for reporting the involvement of the autistic community?
What, if any, recommendations can be made to improve the representativeness of the autistic community within research?

D) Methods

The project is likely to involve a combination of primary data collection and secondary analysis of existing data. A systematic review (or a few) are likely to address some of the research questions. Semi-structured interviews might also be needed with editors of academic journals, funders, research organisations (e.g., Autistica). There is lots of scope for the successful candidate to personalise the research questions and approach as long as the broad title of the project is maintained.