Putting People on the Spectrum in the Driver’s Seat of Their Own Lives: The Clinical Utility of a Goal-Setting Tool That Enables Genuine Self-Determination

Background: Adolescent and adults on the spectrum often encounter barriers to genuine participation in person-centred planning, including difficulties communicating their aspirations due to social and communication challenges, and low expectations of self-determined behaviour on the part of professional staff and family members. With the aim of overcoming these barriers, we developed a picture-based card-sort goal-setting tool for people on the spectrum. A card-sorting process is inherently suitable for people on the spectrum, as it accommodates their preferences for information presented in a concrete pictorial format with minimal written text.

Objectives: The aim of this project was to (a) develop the Adolescent/Adult Goal Setting Tool (AAGST) using participatory action research, and (b) examine the clinical utility of using this tool to enable people on the spectrum to prioritise their goals.

Methods: Three cycles of action research were used to refine the goal items and the pictures and words on the cards. The cards were adjusted in response to feedback provided by over 100 adolescents and adults on the spectrum, and family members through a purpose-designed survey. The adaptive function of the participants on the spectrum was assessed using The Adaptive Behaviour Assessment System, Third Edition to ensure that the sample included participants on the spectrum with a wide range of abilities. A generic qualitative methodology was then used to explore the experiences of people on the spectrum, their families, and professional staff when they used the tool to set their goals. Participants on the spectrum were assessed using The Kaufman Brief Intelligence Test, Second Edition to examine the applicability of the AAGST to a range of individuals across the spectrum. The level of support required to support people with an intellectual disability to participate in the card-sort process was documented. Information on the benefits of using the AAGST and areas for potential improvement was gathered using semi-structured interviews of persons on the spectrum and family members, and a focus group for professional staff. The qualitative data was analysed using content analysis by two coders working independently.

Results: Seventy-two cards with pictures and minimal text were generated and refined through input from people on the spectrum, family members and professional staff. They are grouped into the following categories: (a) social relationships, (b) self-care/home living, (c) study/training, (d) work/employment, (e) health/fitness, (f) community participation, (g) communication, (h) managing finances, and (i) emotional wellbeing. The user sorts the cards into three piles including “Yes – now”, “Maybe” and “No – not now”, and then further prioritises goals within the “Yes – now” pile. People on the spectrum, their families and professional staff reported that card-sorting simplified the goal setting process. Participants on the spectrum reported feeling empowered and having greater ownership of the outcomes.

Conclusions: The AAGST has excellent clinical utility and is highly valued by people on the spectrum, their families and professional staff. As it enables people on the spectrum to prioritise goals that are meaningful and relevant to their lives, the AAGST enhances feelings of autonomy and engagement.