Transition to adult services and adulthood for young people with autistic spectrum conditions

SPRU research team

• Professor Bryony Beresford (Principal Investigator)
• Wendy Mitchell
• Gemma Spiers

External collaborators

• Nicola Moran
• Patricia Sloper
• Linda Cusworth
• Katharine Weston
• Jennifer Beecham, PSSRU, Kent

Project summary

There is some evidence from research that for many young people with autistic spectrum conditions (ASC) the process of transition from child to adult services is problematic. Policy developments and the growth of multi-agency working may lead to improvements in this situation. However, there was little research which could identify the components of models of good practice in transition services or the costs of such services.  Further, there was little detailed research specifically on the transition experiences of young people with ASC and their families, or on the specific practices of transition services for such young people. This study provided in-depth qualitative data on the support provided for young people with ASC and their families in five case study areas. This included support provided by the multi-agency transition services and the support provided for any young people with ASC who do not meet eligibility criteria for such services. It explored managers', staff, parents' and young people's views on the processes and outcomes of transition planning and support. Quantitative data on parents' and young people's satisfaction with service support; met and unmet needs; services used; and perceptions of receiving coordinated support, also enabled comparison between different services and different groups of young people with ASC.

Aims

The aims of the project were to:

• investigate the roles of multi-agency transition services in relation to young people with ASC, and the arrangements that are in place for coordinating services for young people with and without learning disabilities
• explore young people's and parents' experiences of planning for transition and making the transition from children's to adults' services
• explore the costs and outcomes for young people of the transition process
• identify aspects of good practice in this area of work – what works, how does it work?
• investigate sources of funding and costs of different models of transition services.

Methods

The study built on our previous study of multi-agency transition services for disabled young people in five case study areas and information from another small study we carried out in 2008 on arrangements for transition for young people in out of area residential placements. The main sites for the study were three of the case study areas from the previous study, all of which have multi-agency transition teams/workers, and two additional areas that have also set up a multi-agency transition service encompassing young people with ASC.  The case studies examined in depth the differing models of transition services in the five areas, assessing their costs, evaluating their effectiveness in meeting the needs of young people with ASC and their families, and identifying factors within the models contributing to greater or lesser effectiveness.

In these case study areas, interviews were undertaken with managers and staff to explore the organisation and operation of transition services. The views of staff on the effectiveness of the services in supporting young people with ASC through transition were also explored.

The effectiveness of the services in providing co-ordinated care and in meeting young people’s and parents’ needs were investigated through questionnaires to all young people with ASC and their parents who are receiving, or have received, transition services, focusing on amount of service use, satisfaction with the services, processes of care and met and unmet needs.

In order to explore views of the services in more depth, interviews were carried out with a sub-sample of young people with ASC and their parents who were going through or who had been through the transition process.

Cost-related analyses provided descriptive results on costs of such services.

Policy and practice aims

There was little research which explores transition for young people with ASC to identify the components of good practice that are associated with more positive experiences for young people and their parents. The research addressed these issues in order to inform standards of good practice in services for young people with ASC and their families at transition.

Final report

Abstract

The study focused specifically on young people with ASC on the cusp of leavingschool and in the early post-school/college years. This is a period of significant change, and for that reason, presents particular challenges for young people with ASC which are over and above the challenges of transition experienced by other groups of young people. There have been concerns that young people with a diagnosis of autism but with no learning difficulties (that is, those with 'high functioning autism' (HFA) or Asperger's syndrome (AS))whilst not eligible for support from adult social care, do have significant support needs to enable them to successfully transition into adulthood.

Suggested citation

Beresford, B., Moran, N., Sloper, P., Cusworth, L., Mitchell, W., Spiers, G., Weston, K. and Beecham, J. (2013) Transition to Adult Services and Adulthood for Young People with Autistic Spectrum Conditions, Working Paper, no: DH 2525, Social Policy Research Unit, University of York, York.

Additional information