Research priorities of the autism community: A systematic review of key stakeholder perspectives

Abstract

In recent years, a shift in focus has seen researchers seek to identify the priorities and preferences of key stakeholders to shape the direction of future research for those on the autism spectrum. The process of synthesising the views, knowledge and expertise of key stakeholders with either a lived or shared experience of autism is invaluable and can inform future research to ensure that it is meaningful and has the greatest impact. A number of studies have reported on the research priorities of groups within the autism community, but to date, these studies stand alone and priorities have not been considered collectively. This systematic review identified seven studies that reported on key stakeholders’ priorities for autism research. Studies were synthesised according to (a) the target participant group and method of recruitment, (b) the methodology used to elucidate the viewpoint of stakeholders, (c) the country of stakeholders and (d) commonly identified priorities. Common features across studies note the importance of prioritising initiatives that will result in real-world changes in the lives of the autism community and more research across the lifespan. There is an identified need for more diverse stakeholder voices to influence the identification of priorities for future research foci. Continued inclusion of the autistic and autism communities in priority-setting research is imperative for achieving significant outcomes in autism research and to progress the field in an effective and socio-ethical way. Lay abstract It has become very important in autism research to ask the autistic community about what kinds of research they think should be done in order to improve the lives of people with autism. Many studies have reported on research goals from people within the autism community, such as parents of people on the autism spectrum, and practitioners and clinicians who support people on the autism spectrum. So far, the research goals from all of these studies have not been considered together, which is important so that all autism research can be working towards the same goals. We reviewed seven studies that looked at the priorities for autism research from key people within the autism community. Each of the reviewed studies are described according to (a) the types of people involved in the study, (b) the way the research goals from each group of people were identified, (c) the country where they were from and (d) the most common research goals from across all of the studies. Within these seven studies, research that will lead to real-world changes in the daily lives of the autism community and a greater focus on skill training for people with autism across their lives were found to be very important. From this review, we found that it is also very important to include a range of different people from the autism community when deciding what autism research goals should be focused on so that future research can be more helpful for the autism community.

Is social camouflaging associated with anxiety and depression in autistic adults?

“…Despite this, the evidence base on how to treat mental health problems in autism is meagre, and most autistic people with mental health problems report receiving inadequate help for these difficulties [22]. Reflecting this, research into mental health problems has been identified as a key priority for research across a variety of stakeholder groups [23,24].…”

Short report: Patterns of US federal autism research funding during 2017–2019

“…The IACC recommended increased funding for research on lifespan issues, and autistic individuals have also expressed a desire for increased research in this area (Frazier et al, 2018;Roche et al, 2021). However, research on lifespan issues only comprised 2.51% of the autism research funding during 2017-2019.…”

Global perspectives on autism acceptance, camouflaging behaviours and mental health in autism spectrum disorder: A registered report protocol

“…In order to support autistic people in achieving positive long-term outcomes, it is important to further understand the presentation of mental ill-health in autism and to determine why autistic individuals are at higher risk of mental health difficulties. This is crucial since the mental health of autistic individuals has been identified as a key priority for research across multiple stakeholder groups [ 26 , 27 ].…”