The Australian Longitudinal Study of Adults with Autism (ALSAA): Inclusive Research Protocol Development and Baseline Sample Characteristics

Background:

There is a reported disconnect between autism researchers’ aims and opinions, and those of adults on the autism spectrum. Including people on the spectrum in the execution of research is ethically important, and ensures findings are relevant to the autism community. Despite a growing body of literature on inclusive research with people on the spectrum, there are few protocols or guidelines, with none regarding longitudinal studies. Further, most autism research is focused on children. There is a need for longitudinal studies to understand changing needs and causality among adults.

Objectives:

The Australian Longitudinal Study of Adults with Autism (ALSAA) aims to contribute to a broad, rigorous understanding of adulthood, guided by adults on the spectrum. We describe the inclusive research protocol developed through consultation with a network of autistic advisors, that is used to guide on-going design, interpretation and dissemination of ALSAA research. We also describe the current baseline sample, and how participant feedback and other consultation processes were incorporated into subsequent data gathering.

Methods:

The ALSAA is a questionnaire based study incorporating a wide array of primarily standardised measures. Autistic advisors were recruited via advertisement and targeted invitation, such as members of the Autism CRC Research Academy, which focuses on training peer researchers. Topic areas were selected in consultation with autistic advisors, who also reviewed and piloted content to ensure comprehension for an autistic audience. Autistic advisors were tasked with identifying any ambiguous or inappropriate language, formatting issues, or potential for misinterpretation.

A voluntary sample of autistic adults and non-autistic controls living in Australia and aged 25+ were then gathered via targeted advertising with various autism organisations, other service or support providers, and online autism communities. Three versions of the questionnaire were developed: self-report, informant and carer/family member, to allow greater accessibility for people who are unable or do not wish to self-report. All specific findings are reviewed by autistic advisors, who are provided with a condensed, lay summary of findings and suggested interpretations and implications.

Results:

The ALSAA Inclusive Research Protocol has been reviewed by autistic advisors and operationalised. Autistic advisors have enhanced design and outputs from ALSAA, including: rejecting some potential scales, improved usage of literal language, advice on clearer, less visually overloading layouts, and providing additional, insightful interpretations and implications of specific findings.

As at October 2017, 267 autistic adults have participated in the ALSAA baseline, with 50 meeting criteria for intellectual disability. 129 neurotypical control participants and 102 carers participated to date. There is an over-representation of autistic females (50.2%), in common with other online autism research. The majority of autistic participants (63%) are satisfied or very satisfied with the questionnaire.

Conclusions:

Autism is a life-long condition with more focus needed on adulthood. Including people with autism in autism research ensures more relevant and valid findings. The ALSAA Inclusive Research Protocol could be applied to other studies striving to conduct inclusive research with adults on the autism spectrum.