Transition to adulthood: Support for autistic young people in the UK
Research type
Research Study
Full title
Transition to adulthood: Support for autistic people without intellectual disability in the UK
IRAS ID
322160
Contact name
Hannah Bowman
Contact email
Sponsor organisation
Canterbury Christ Church University
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
1 years, 2 months, 14 days
Research summary
Adult services for those with Autism Spectrum Disorder without co-occurring intellectual diasability are not routinely provided (Colver et al., 2019) in the UK. Support is available for autistic young people with a Special Educational Need until the age of 25 years with an Education, Health and Care Plan (NHS England, 2015). However, the standard of EHCPs is variable (Castro et al., 2019) with poor outcomes recorded for autistic young people in mental health (Crane et al., 2019; Griffiths et al., 2019), education (Gurbuz et al., 2019; Cage & Howes, 2020), employment (Office for National Statistics, 2022), independent living and parenthood (Helles et al., 2017; Roy et al., 2015) compared to their peers. This discrepancy is unacceptable and needs to be addressed in the context of the neurodiversity paradigm (Strand, 2017; Kapp, 2020); This suggests diversity across brains/minds is natural and the difficulties experienced by some are often due to societal structures which exacerbate neurological difference.
Whilst there is research outlining barriers to accessing support from services and evidence that the quality of transition between services is poor, there is little research outlining factors for 'successful' transition to adulthood; especially those that are agreed on across stakeholder groups. This research aims to identify factors for good quality transition support by accessing the views of autistic young adults who feel they had a successful experience of transition, as well as the parents/carers and professionals that care for autistic young people (stakeholders). We aim to understand what protocols for transition currently exist, which measures usefully inform transition planning, to what extent transition planning occurs consistently and how best to support autistic young people. We will use the Delphi method to explore consensus among stakeholders regarding these aims. The research is funded by Canterbury Christ Church University with recruitment primarily through Great Ormond Street Hospital.
Lay summary of study results: This study was an academic research project sponsored by Canterbury Christ Church University. It aimed to explore the experiences of key stakeholders to understand:
A. What are the key factors for ‘successful’ transition to adulthood that are agreed across stakeholders?
B. What support do stakeholders agree is helpful from systems (i.e. services, schools or charities) to achieve a successful transition to adulthood?
C. What resources (e.g. planning, measures/tools and protocols) do stakeholders agree are most important to achieve successful transition to adulthood?Participants answered up to three online questionnaires. 42 stakeholders participated in this study. Stakeholders were either autistic young adults without a learning disability, caregivers of autistic young people and healthcare professionals working with autistic young people.
The three expert stakeholder groups in this study reached a high overall level of consensus (agreement) on 40/52 statements regarding the transition to adulthood for autistic young people without a learning disability.
Overall, participants indicated that understanding oneself and needs is an important factor for a successful transition, that helping autistic young people to know when and how to seek support for themselves is an important form of support, and a directory of local services would be an important tool to support families.
It is hoped this information will help services to improve the support autistic young people and their families receive during the transition to adulthood. Ideas for future research are shared in the full report but there are no plans for further research at present.
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
23/SC/0079
Date of REC Opinion
26 Apr 2023
REC opinion
Further Information Favourable Opinion