Measuring Person Centred Outcomes for Autistic Adults in Receipt of Social Care – Lessons and Results from a Nationwide Study.

Background: Many autistic adults receive social care (human services). This care is often publicly funded. Autistic adults and their families have a right to expect the care to lead to positive outcomes. The evidence base for how most effectively to provide this support is poor. Hence suitable outcome measures are needed. Previous attempts at measuring outcomes for autistic people have largely been based on the subjective views of researchers, or lengthy questionnaires which many autistic people have difficulty completing. Barriers to establishing outcome measures include: the costs and burdens which measurement processes impose on services and the people they support; the varying priorities of autistic people, and the importance of not imposing social norms on them; the varying levels of intellectual disability among autistic people and the forms of communication which they employ; and the range of stakeholders’ expectations (autistic people, their families, commissioners of services, regulatory bodies, policy makers, service staff).

Objectives: This study was conducted by a leading nationwide charity for autistic people and their families. The study’s objectives were (1) To consult each stakeholder group on the outcomes most of interest (2) To review existing approaches and their suitability for adults in receipt of social care (3) To test existing and new approaches in a cross-section of service settings.

Methods: The study comprised an international literature review of outcomes for autistic people; a nationwide review of existing approaches within the charity and among other autism charities and social care providers; focus groups and interviews with autistic people, families, social care staff and managers; a nationwide survey of 6,000 autistic people and their families; pilot fieldwork in a cross-section of service settings using questionnaires and observational methods; testing of recording systems; use of independent researchers; and analysis of administrative data held by the charity. The study received approval from the research ethics committee of an external publicly funded body.

Results: No single outcome measure was found that addresses all stakeholders’ expectations. Safety, quality of family life, achievement of meaningful goals, reduced support needs, and societal benefits collectively go some way to meeting their evidence needs. No existing instruments or approaches were found that proved workable on a large scale in a social care setting. In particular multi-dimensional Quality of Life measures, even if adapted for people with an intellectual disability, have some use in goal setting but are too broad and abstract for use with many autistic people. Autistic people may also find them patronising or intrusive.

Conclusions: An effective outcomes framework for adult social care for autistic people should comprise a range of measures, primarily tailored to the individual and also if possible addressing other stakeholders’ priorities. Although goal setting should be person centred, standard outcome measures which can be aggregated are preferable for benchmarking and evaluation. A mixture of observation, administrative data and fieldwork is needed. Outcome measures should not only be reliable and valid but also fulfil more practical and autism specific criteria such as being low burden, person centred, and flexible.