What supports do autistic adolescents and adults need? Perspectives of self‐reporting adults and caregivers
Authors: Hill Jessica , Copley Jodie , Donovan Sophie , Ashburner Jill , Taylor Jennifer , Bobir Natasha 
Published: July 2024

Introduction

Increasingly, autistic adolescents and adults are accessing occupational therapy. However, limited evidence exists on the type of supports that are important to them. Examining the patterns of supports valued by autistic adolescents and adults will inform the design of occupational therapy services. Therefore, this study aimed to identify what supports autistic adolescents and adults believed to be the most important.

Methods

This study involved two anonymous online surveys. Survey one involved 54 items and was distributed to caregivers of autistic adolescents and/or adults. Survey two included 41 items and was distributed to self‐reporting autistic adults. Surveys sought closed and open‐ended responses about the support needs of autistic individuals living in Australia. Quantitative data were analysed as counts and frequencies of responses, whereas short‐answer responses were analysed through content analysis.

Community and consumer involvement

There was no consumer or community involvement in the completion of this project.

Results

A total of 68 caregivers of autistic adolescents or adults and 59 self‐reporting adults completed the survey resulting in 127 responses. Quantitative data from both autistic adolescents' and adults' closed‐answer responses showed that the highest support needs were for supporting participation in employment and supporting health and wellbeing. Content analysis of open‐ended responses, performed separately for each participant group, revealed six categories: employment, promoting independence, supporting positive social and communication experiences, supporting health and wellbeing, caregiver support, and promoting autism acceptance.

Conclusion

Results highlight that autistic individuals and their caregivers have a diverse range of priorities, all of which align with the scope of occupational therapy practice. Differences between the priorities of autistic individuals and their caregivers highlight the importance of therapists providing person and family‐centred approaches tailored towards both the autistic person's and their caregiver's needs.

Plain language summary

Increasingly, autistic adolescents and adults are accessing occupational therapy services. However, limited information exists regarding the type of supports that are important to them. Understanding what supports are valued by autistic adolescents and adults will support occupational therapists deliver effective and individualised services. Therefore, this study aimed to identify what supports autistic adolescents and adults believed to be the most important to them. This study involved two anonymous online surveys. Survey one was completed by caregivers of autistic adolescents and/or adults. Survey two was completed by self‐reporting autistic adults. Surveys included both open‐ended and closed‐answer responses to better understand the support needs of autistic individuals living in Australia. A total of 68 caregivers of autistic adolescents or adults and 59 self‐reporting adults completed the survey resulting in 127 responses. Closed‐answer response questions from both the caregivers and self‐reporting autistic adolescents and adults showed that the highest support needs were for supporting participation in employment and supporting health and wellbeing. Open‐ended response questions revealed six main priorities including, employment, promoting independence, supporting positive social and communication experiences, supporting health and wellbeing, caregiver support, and promoting autism acceptance. This study found that autistic individuals and their caregivers have a diverse range of priorities, all of which align with the scope of occupational therapy. Further, participant responses highlight the importance of therapists providing person and family‐centred approaches tailored towards both the autistic person's and their caregiver's needs.