Table 1

The ALSAA inclusive research protocol

StepDescription of step and considerations
Step 1: recruitment of advisors/peer-researchersEnsure recruitment is inclusive of all potential autistic individuals including adults with intellectual disability*, consider using multiple channels of recruitment (eg, Autism associations, self-advocacy networks, carer networks, adult networks, local radio, social media and word of mouth). In Australia, seek support from the Autism CRC Research Academy.†
Step 2: building rapportIf an established relationship does not already exist between the autistic individual and researcher, the researcher should offer to meet the individual (either face to face, over video conference or phone call). Be mindful that some autistic individuals may prefer to communicate via text or email and not to meet in person and should not be required to.
Step 3: clarify what will be expected from the advisorOutline tasks autistic advisors or peer researchers will be asked to complete. Specify the frequency and timing of when they are likely to be contacted. For specific tasks clearly provide step-by-step instructions, flexible lead-time, timeframes for feedback, area of investigation and broad aim of the study. Make information available in Easy English or plain language as appropriate. Specify the type and nature of advice sought. Clearly describe how and where their input will be used and why their input is being sought.
Step 4: ethics, confidentiality and acknowledgementDescribe ethics of the project and expected confidentiality. As required, specify on individual documents that the document is confidential and not to be distributed without discussion with the researcher. Can the autistic individual opt out if they would like? Outline what will happen if they choose to withdraw, for example, this will not affect their relationship with the research team, university or any other associated organisations. It is a voluntary process.
Negotiate and make explicit how the autistic advisor or peer-researcher will be acknowledged. Consider how the autistic individual may be recognised in a manuscript or research output. This may include as a coauthor, in the acknowledgements section and/or in discussing methodology and findings.
Step 5: identify preferred communication styleAsk the autistic individual their preferred communication style for providing feedback (eg, face to face, phone call, email, video or a variety of techniques). Also, in what medium they would like to receive the results/findings, for example, academic writing style, easy English writing style, mostly graphs/pictures, mostly dot points, described in person, video, PowerPoint presentation. Although not all mediums may be practical, it is important to identify the autistic advisor’s preferred style and then work together to identify a medium of communication which will be understood and accessible by both the autistic advisor and the researcher.
Step 6: the sensory environmentThe researcher must provide an ‘autism-friendly’ environment on any occasion where the autistic advisor and the researcher may be meeting in person, see p. 12–15 in the Autism CRC Inclusive Research Practice Guides and Checklists for Autism Research56 regarding creating autism-friendly environments.
Step 7: involvement in methodological design/results/findingsAutistic advisors input is sought in regard to areas of investigation, questionnaire design and interpretation of results. The researcher will need to consider that ranking of priority areas may be a difficult task for some advisors and employ other consensus decision-making strategies. The researcher will need to present questionnaire design questions or quantitative or qualitative results in an understandable format, developing design issue summaries or results summaries in the medium preferred by the autistic advisor or peer-researcher. This means the researcher may need to make a number of decisions around data analysis and interpretation. Where possible, outline each of these decisions so the process is transparent and the autistic advisor can reflect on the decisions made by the researcher and whether these were appropriate in their view. Provide clear guidance on what advice is being sought, provide lead time, and the time frame and process to follow for providing advice. How long should the advice be? In what format? Who will be reading it, who do they send the advice to? What are the researchers specifically looking for, what should the advice focus on?
Step 8: feedbackOnce the researcher receives the advice from the autistic advisor, the researcher should provide a time frame in which the autistic advisor will receive an update on what aspects of the advice was incorporated and the effect it had/did not have on the methodology, findings and/or interpretation.
Step 9: final checksOnce the manuscript or research output has been further developed, the autistic advisor should receive a copy of the manuscript prior to submission. If the autistic advisor has limited experience with academic writing, the researcher should offer to describe/provide a lay summary of the overall article for the advisor.
Step 10: acknowledgementAutistic advisor or peer-researcher to be acknowledged in the agreed on manner (eg, coauthor, thanked in the acknowledgement section, acknowledged during a presentation, etc).
  • *Although inclusive consultation occurred at time 1, the ALSAA RAN does not currently have an active member on the autism spectrum with an intellectual disability. Renewed efforts to recruit an advisor will be instigated when autism and intellectual disability focused outputs are commenced. We consult as needed with an advisor with intellectual disability not on the autism spectrum currently.

  • †The Autism CRC Research Academy (https://www.autismcrc.com.au/research-academy) provides training for peer researchers.

  • ALSAA, Australian Longitudinal Study of Adults with Autism; CRC, Cooperative Research Centre for Living with Autism.