How to Recruit Participants for Autism Studies
02 December 2020
Individuals diagnosed with Autism Spectrum Disorder demonstrate difficulties in social communication and interaction and demonstrate repetitive patterns of behaviour or interests.
Recruiting participants for autism research studies could contribute to difficulties in research recruitment due to the unique profile of autistic individuals. Some autistic individuals may be reluctant to participate in new experiences or meet new people, which could influence their willingness to participate in autism research. Here we discuss four strategies to improve research participations in autistic individuals.
Tip #1 Be clear on the benefits of the research study
Over 70% of autistic people with or without intellectual disability and their family members identify that they are more likely to participate in a research study that is going to benefit the lives of the autism community. The autism community prioritise research studies that can improve the opportunities for autistic people to successfully participate in all areas of life, recognise their abilities and contributions, and promote increase acceptance of autism in the community.
One way to increase participant perceptions of the benefits of the research study is to engage them as study partners at all stages of the research process. This includes involving autistic people and their family members in planning, designing, implementing research projects, analysing results, and disseminating results. Research studies involving autistic people as study partners are more likely to increase participant perceptions that the research findings will benefit the larger autism community.
Recruitment information flyers for autism studies should also clearly communicate the research aims and the potential benefits of the research study when recruiting participants.
Tip #2 Maximise choice and flexibility
Providing choices and flexibility ensures that the research study can cater for the variety of preferences and needs of autistic people. For example, participating in face-to-face research studies may not be suitable for autistic people with mental health difficulties. Some may feel anxious to travel to new environments and prefer the option to participate in video or phone calls or online study. Research projects could offer study participants to choose the mode of participation to increase their comfort levels to participate in research.
Other examples could include offering the choice to accept or decline research incentives (e.g. gift, voucher, cash), project communication (e.g. newsletters, reports, reminders) or event invitations.
Tip #3 Provide easy access to communicate with the researchers
The majority of people in the autism community stated that they are more likely to participate if they can easily contact the research team. Autistic people may want to contact the researchers to ask for clarification or explain their responses to a survey question. For caregivers or family members of autistic people, they may like to discuss practical arrangements to encourage their child's participation in the research study.
It is essential for research advertisements to clearly state the contact information of the researchers of the research project, including the phone number or email of the research coordinator. Setting up a social media account or website for the autism study can be a helpful recruitment strategy as study participants can easily access the information of the research study.
Tip #4 Increase accessibility to participate
One strategy to increase research participation is to increase the accessibility for autistic people to participate in the research study. To address this, it is essential to carefully consider the aspects of the research project that can potentially deter some individuals from participating. These barriers could include transportation costs, length of the research study, the complexity of the research questions, and environment. By taking the time and effort to address these barriers, this can increase the research recruitment in autism studies.
Some suggestions to increase the accessibility for autistic people to participate include:
- providing reimbursement for travel costs,
- lowering the time commitment or breaking the research study into smaller sections,
- offering examples or clarifications to research questions,
- providing visual aids during data collection,
- give the option for a carer or a companion to present,
- choosing venues that accommodate the sensory needs of autistic people (e.g., adjusting the lighting and sound of the room)