What supports do autistic adolescents and adults need? Perspectives of self-reporting adults and caregivers.

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.

Co-Design and Co-Production of a Goal Setting Tool for Autistic Adolescents and Adults.

Background: A review of existing tools suggested a need for a goal setting tool for autistic people that (1) addresses the heterogeneity of autistic people to the greatest degree possible; (2) addresses a broad range of goals in areas including self-care and home living, and social, community, educational, and employment participation; (3) incorporates autism-specific adaptations such as visual supports; (4) facilitates the initial identification of goals; and (5) enables the prioritization of goals. Aim: This project aimed to develop a picture-based card-sort goal setting tool with relevant and comprehensible goal cards using a co-design and co-production process. Methods: The first three of four phases of participatory action research (PAR) used to develop the tool are presented, including (1) initial design by autistic people and professional practitioners, and co-production with an autistic graphic designer; (2) survey of 15 autistic people and 11 family members to evaluate and refine the goals, pictures, and wording; (3) second survey of 23 autistic people and 19 family members to re-evaluate and re-refine the goals, pictures, and wording. Results: Responses to open-ended survey questions recommended changing many of the pictures and some of the words on the goal cards. As the majority of respondents rated each of the 72 goals as important, they were all retained. The mean percentage approval of the pictures improved from 78% for survey 1 to 86% for survey 2. The mean percentage approval of the wording improved from 87% for survey 1 to 97% for survey 2. Conclusions: The use of a co-design and co-production methodology over three phases of PAR involving autistic people and their families resulted in many refinements to the goal cards. These iterations in the design process maximized the extent to which the goal cards are easily understood and relevant to the needs of autistic people.

Why is this an important issue?: Autistic adolescents and adults are often asked to identify their goals during planning meetings about their support services. However, the goal setting tools that exist often do not provide enough support to autistic people to come up with goals that are important to them and to explain them to others. We developed the Adolescent Adult Goal Setting Tool (AAGST) with, and for autistic people to help them set goals that are meaningful and important. What was the purpose of this study?: We developed a set of cards with pictures that autistic people could sort into piles including a "Yes­now" pile for goals they want to work on, a "No" pile for goals they do not want to work on, or a "Maybe" for goals they are not sure about. The autistic person then chooses between one and six of the most important goals from the "Yes­now" pile and places them in order from most to least important. They are then supported to put their goals into their own words and develop a plan for achieving their goals. The purpose of this study was to gather the opinions of autistic people and their family members on the goals, and the words and pictures on the cards. What did the researchers do?: We wanted to develop a set of goals that are relevant to autistic people, and goal cards with pictures and words that autistic people with a range of ages, skills, and interests can easily understand. Autistic people helped us develop the first set of the cards. We then used a survey to ask 15 autistic people and 11 family members for feedback on the cards. We modified the cards based on their feedback. We used a second survey to gather feedback from a further 23 autistic people and 19 family members. We modified the cards again according to their feedback. What were the results of the study?: Most of the autistic people and their family members rated the 72 goals as important. Based on their feedback, we modified 43 pictures, developed 8 new pictures, and changed the wording on 4 cards. On average, 97% of people who completed the second survey thought that the wording was clear and 86% thought that the pictures were clear. What do these findings add to what was already known?: Extensive feedback from autistic people and their families helped us to develop a goal setting tool to suit autistic people with a range of ages, skills, and interests. What are potential weaknesses in the study?: We do not know if the goal cards are suitable for autistic people who use methods to communicate other than speech (e.g., sign language or symbols) or autistic people from other countries or cultures. Future studies should include these people. How will these findings help autistic adults now or in the future?: The Adolescent Adult Goal Setting Tool supports autistic people to express their wishes during planning meetings, giving them more choice and control over their futures.