RESUMO
Background: Autism is a developmental disability that affects how individuals experience the world. Each Autistic individual experiences Autism in their own way, meaning that the level and type of assistance in their everyday lives vary widely. A shortage of programs and services tailored to Autistic adults exists worldwide, and the current gap between needs and services is likely to worsen as the growing number of Autistic children being diagnosed reach adulthood. This research sought to determine priorities in terms of health and social service needs of Autistic adults and to examine factors influencing whether or not these services were being received. Methods: Through a multistakeholder approach, researchers and Autistic adults codeveloped the Maritime Provinces Needs Assessment Survey and collected data from August 2017 to February 2018. The research team engaged Autistic adult partners, including one that was project colead, as full partners. We recruited survey respondents from three Maritime Provinces using mainly social media and local Autism networks. We used Poisson regression analyses to identify factors most strongly associated with the number of unmet needs reported by Autistic adults. Results: In total, 260 respondents completed the needs assessment survey: 77 self-reporting Autistic adults (aged 19-55 years), 87 Autistic adults (aged 18-63 years) whose information was provided by a proxy respondent, and 96 professionals working in the field of Autism. Autistic adults reported a mean of 2.1 ± 1.5 (self-reported) and 2.8 ± 2.1 (proxy-reported) services wanted but not received. The number of mental health and neurodevelopmental conditions, unemployment, and perception that government support is insufficient were positively related to unmet needs. Conclusions: Overall, the results of this study highlight considerable gaps among the support needs of Autistic adults. The identification of factors associated with a higher number of unmet needs helps identify potential subgroups requiring more attention. Lay summary: Why was this study done?: There is currently a shortage of programs and services for Autistic adults. Little is known about which services are most important to Autistic adults and which factors are associated with not receiving them.What was the purpose of this study?: Our goals were (1) to determine the service need priorities of Autistic adults and (2) to examine factors associated with unmet needs.What did the researchers do?: The researchers invited health professionals, service providers, policy makers, Autism advocates, as well as Autistic adults and caregivers of Autistic adults to participate as part of the project team. In the early phases of the project, we named an Autistic adult colead of the project. In doing so, we acknowledged that conducting relevant research on the Autistic adult community implies not only hearing their voices and concerns, but also providing an opportunity for equal say on the research itself.We adapted previously used surveys to align them with our objectives of focusing only on Autistic adults. We launched the survey online and promoted it using various media and community channels, many of them direct suggestions from Autistic adult team members. We made paper copies available and provided a phone number for those who needed support filling out the survey.What were the results of the study?: More than 25% of Autistic adults identified 12 different services as priority needs.Autistic adults who (1) reported more mental health and neurodevelopmental conditions, (2) perceived their mental health as poor, or (3) felt that government support was insufficient were at greater risk of having unmet needs.What do these findings add to what was already known?: Similar to previous studies, we found that the service needs of Autistic adults are varied, and that many are not receiving the services they consider a priority. Our study also went one step further by identifying factors that are associated with a higher number of unmet needs.What are potential weaknesses in the study?: Our sample does not necessarily reflect the Autistic adult community as a whole, since we were unable to guarantee that hard-to-reach segments had access to our survey. In addition, we are unable to know how our results may change over time, as our survey was filled out on one occasion only. Finally, we did not measure Autistic traits and therefore are unable to estimate how different types of traits are associated with certain needs.How will these findings help autistic adults now or in the future?: Our results may help bring attention to subgroups of Autistic adults who need more help receiving the services they require.
RESUMO
BACKGROUND: Little research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about the health and well-being of autistic adults as well as their service and support needs. To do so, CONNECT welcomed autistic adults and caregivers of autistic adults as members of the research team, alongside researchers, policy-makers, service providers and health professionals. Autistic adults were involved in every stage of the research project and participated in team meetings held several times a year as well as in numerous email exchanges. METHODS: Two feedback questionnaires were designed for this study: one for the scientific co-researchers and one for the autism community co-researchers (the project's "patient partners"). Although the surveys varied from one another, they probed respondents to provide critical and constructive comments on issues that were central to their engagement in CONNECT. Four scientific co-researchers and four autism community co-researchers filled out the questionnaires. A comparative analysis was carried out on the responses provided to the open- and closed-ended survey questions as well as on complimentary data collected from the team's documents. RESULTS: CONNECT was seen as a positive experience for both groups. Highlights included: helping tailor and design research and its relevant materials to better suit the needs of the autistic community; establishing relationships and creating long-lasting friendships with other autistic adults; gaining a better understanding of the research process; and forging new connections with regional, national and international stakeholders. Areas for improvement include: establishing clear roles, responsibilities and expectations from the start; outlining a strategy to address unforeseen changes in project leadership; and creating a platform allowing for the involvement and participation of a more representative sample of adults on the autism spectrum. CONCLUSIONS: While not without its challenges, CONNECT demonstrates that a collaborative multi-stakeholder approach engaging autistic adults can be an effective model for conducting research on adult autism. Autistic adults and their caregivers can make the research process more open and accessible and make its outputs more relevant, useful and meaningful to the wider autistic adult community.