The Associations Between Clinical, Social, Financial Factors and Unmet Needs of Autistic Adults: Results from an Observational Study

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Jose, C., George-Zwicker, P., Bouma, A., Tardif, L., Pugsley, D., Bélanger, M., Robichaud, M., & Gaudet, J. (2021). The Associations Between Clinical, Social, Financial Factors and Unmet Needs of Autistic Adults: Results from an Observational Study. Autism in Adulthood, 3(3), 266-274. https://doi.org/10.1089/aut.2020.0027

Publication date: 1 Mar 2021 Added to AutiHub: 9 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
8
Publication authors identified as autistic
1 / 8 (12.5%)
  1. Caroline Jose
  2. Patricia George-Zwicker
  3. Aaron Bouma *
  4. Louise Tardif
  1. Darlene Pugsley
  2. Mathieu Bélanger
  3. Marc Robichaud
  4. Jeffrey Gaudet

Abstract

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. 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. Our goals were (1) to determine the service need priorities of Autistic adults and (2) to examine factors associated with unmet needs. 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. 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. 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. 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. Our results may help bring attention to subgroups of Autistic adults who need more help receiving the services they require.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 17:55.

Cited references
52
With a DOI
47
Without a DOI, from raw bibliography text
4
2 / 52 (3.8%) cited references include at least one author identified as autistic.
References with data to complete
0 / 52 (0.0%)
References with detected author names
52 / 52 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
3
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
264
From DOI or external metadata
264
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
76 / 264 (28.8%) names are linked to an author already present in AutiHub. 188 / 264 (71.2%) names are not yet linked.
Names linked to a person identified as autistic
6 / 264 (2.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 6 / 76 (7.9%). Distinct people identified as autistic: 5 / 226 (2.2%).
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