Communication and Interaction in Autism Research - Perspectives from Volunteers and Scientists

Background:

Recent years have seen an increased awareness of the cultural and ethical challenges in autism research and the unease within the autism community with regard to the perceived attitudes of scientists conducting research into ASC (Pellicano & Stears, 2011). A large-scale study on the landscape of autism research pointed out that the autism community is not satisfied with the distribution of funding for different areas of research and furthermore that there is a discrepancy between researchers’ perceived engagement with the autism community and the experience of autistic people themselves (Pellicano et al., 2014).

Objectives:

This study aims to achieve a better understanding of the dynamics that underlie the apparent ‘rift’ between autism researchers and individuals with ASC with a particular focus on the communication and interaction between researchers and study volunteers.

Methods:

Individuals with ASC and autism researchers were invited to fill in a mixed-methods survey covering the following topics: involvement in autism research, ethical concerns about autism research, relevance & impact of autism research, communication of research results, media representation of autism, misconceptions in autism research, community engagement in autism research and the idea of neurodiversity.

The questionnaire was piloted with a small sample of ASC participants (N=16) in 2011 and feedback about the issues covered and the format of the survey was obtained.

To date, 100 individuals with ASC and 65 autism researchers have completed the survey; data collection is on-going until mid-2016.

Quantitative data is analysed with the appropriate chi-square and regression analyses whilst a grounded theory approach is used to elaborate on data trends and code the answers to open-ended comments.  

Results:

The level of concern about ethics in autism research was similar in both groups (χ²=1.56, p=0.21), but the areas of concern differed between the groups with the exception of the search for a cure which was mentioned by both groups. In addition to these concerns, individuals with autism were on average less optimistic about the potential of research to improve the lives of people with autism (χ²=12.20, p=0.0005) and the majority (58%) was not satisfied with the way research was communicated to them. However most respondents would still like to be more involved in research (84%). At the same time researchers stressed that they would like to see more translational goals in research and improved communication between participants and scientists, but notably significantly more ASD participants felt that there is a divide between the scientific and the autism community (χ²=8.898, p=0.003).

Conclusions:

The survey illustrates that while researchers and individuals with autism agree about certain aspects concerning the quality, purpose and ethical challenges of research, there are also still areas of disconnect and dissatisfaction. While one has to recognise a certain diversity of opinion, the emerging themes of this survey suggest that culturally sensitive research approaches and meaningful community involvement could improve the relevance of the research that is conducted. It remains to be seen what format best supports a mutual transfer of expertise between researchers and research participants to address these disparities.