Effects of PACT on autistic adults

Researchers now aim to assess the long-term effects 15 years later, focusing on service use, unpaid care, costs, and cost-effectiveness. This work supports informed policy decisions, aligning with SSCR objectives to enhance social care services and address unmet needs.

Find out more about PACT

• Aims

  Research questions

  1. What are the long-term personal and economic consequences of PACT in supporting autistic people and their parents? 

  •  What social care and other services are used, and unpaid support received, by autistic people in early adulthood who participated in PACT as pre-school children?
  • What are the private and public costs of care/support and wider impacts (e.g., lost employment/productivity)?

  2. What care/support is not accessed, and what do autistic people and families see as barriers to access?
  3. How do patterns of service use, service gaps and costs vary across the sample, by reference to characteristics (autistic people and families) in childhood and early adulthood? 

• Methods

  The study explores the long-term impact of the PACT intervention 15 years after delivery, focusing on autistic young adults and their families. Researchers will conduct online interviews with participants from both intervention and control groups.

  Key areas of data collection include quality of life, social care service use, unpaid care, and family costs. Economic evaluation will analyse resource use, outcomes, and costs, comparing intervention and control groups, while adjusting for childhood characteristics. Statistical analyses will identify patterns and associations in service use and gaps. Data will be anonymised, stored securely, and used to inform policy and practice decisions.

• Planned outputs

  Evidence on long-term impacts of early intervention for autistic children remains limited.9 This study offers a unique opportunity to analyse resource impacts in early adulthood (public sector and individuals’ own resources) of a well-regarded pre-school intervention to support evidence-based decisions. We will generate evidence on what autistic people and families see as gaps in support and explore their perceptions of barriers at this key life-stage. We will produce evidence on whether investment in PACT could reduce reliance on social care 15 years later. We will report resource impacts across public and private budgets: for whom are service gaps largest and/or costs highest? 

  These findings can inform decisions about support for autistic people and families in childhood and into early adulthood, and potentially the need for cross-agency collaboration to support better outcomes. This can support strategies to improve social inclusion, helping autistic individuals play fuller roles in their communities and the economy.

  We will share findings through a report to SSCR, lay summary (probably also an easy-read version, depending on advice from involvement partners) and one or more journal papers. We will build on strong links established through recent work, including with the Autism Alliance (and constituent charities), National Autism Team at NHS England, officials at DHSC to explore ways to disseminate findings.