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

ABSTRACT

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.