Transition to adult services and autism

The transition from children’s to adults’ social care can be particularly difficult for people with autism. In 2010 it was reported that 70 per cent of children with autism identified in the special educational needs (SEN) system were entitled to transition planning due to statements of special educational need.[21] Since then there has been a year-on-year increase in the number of children and young people with autism receiving help at school, and autism is the most common reason for a child to receive a statement of special educational needs.[61] The Children and Families Act 2014 introduced education, health and care (EHC) plans for children and young people from 0–25 years, replacing statements of special educational need. Such plans are intended to be more person-centred and to prepare young people for adulthood, with the focus on transition remaining from year 9 (age 14).[19]

A recent study found that support for young people leaving school remained variable,[62] with some places providing transition support to all students identified as autistic, while others provided support only to young people with greater support needs. Post-education support was less accessible, particularly for autistic young people who were not entitled to adult social care. Guidance for ‘Think autism’ suggests that even where young people with autism are not entitled to adult social care services, under the Care Act 2014 they should be signposted to other sources of guidance and support in the community.[20]

Young autistic people face the same problems as other groups during transition,[13] namely:

difficulties maintaining consistent staffing over the transition period
lack of communication between professionals in different services
different services switching to adult services at different ages
fewer, less well-resourced services in adulthood
paying for services that were free as a child
carers feeling excluded from consultations about their now-adult family member.

Autism-specific barriers

Some aspects of autism can make transition particularly difficult:

School provides a structure that many people with autism like, and feel the lack of when they leave.
Coping with change can be problematic.
Conceiving of a range of new options can be hard.
There is a chance of falling through the gaps in adult services for people with high-functioning autism and Asperger syndrome. [63]
Adult life and expectations, including the world of personal relationships, can carry new challenges. [10, 64]
There is limited provision of further education options, especially for those who display challenging behaviour. [13, 62]

Furthermore, if transition goes badly, people with autism can be stuck in poor-quality services, and have lives that are not as independent as they ought to be.[23]

Improving transition

During transition, services should aim for:[62]

full involvement of young people with autism and their families in multi-agency transition planning
respect given to the preferences of young people with autism. Research has found that adaptations to the person-centred approach to consultation were particularly helpful in transition [65]
better information given to families as young people approach transition
better communication between adults’ and children’s services. Under the Care Act 2014, local authorities have a duty to assess young people who are likely to need adult services regardless of whether they have been receiving services prior to transition [19]
an opportunity for people placed out of area to return home, should they wish
autism training for transition staff, including staff working in child and adolescent mental health services
attention paid to the needs of young people with autism who display challenging behaviour [62]
autism training for workers in employment and training services such as Connexions and the National Careers Service
differentiation in assessments between support needs and education needs, so that people are not put on academically limited courses due to their communication difficulties
awareness that, for those who go on to college or university, support needs may need consideration alongside educational needs [66]
an underlying assumption that young people with autism can lead full lives of their own choosing.

Approaches to transition

In England, transition planning is addressed within a young person’s education, health and care plan [67] covering social care, education, health and support into employment, which runs until a person is 25 (for those in education or training – excepting university study). There is also a strong emphasis on professionals having much higher aspirations for children with disabilities, building on the messages of the previous government’s ‘Aiming high for disabled children’.[68]

In Northern Ireland, transition planning is guided by the Education (Northern Ireland) Order 1996 as amended by the Special Educational Needs and Disability (Northern Ireland) Order 2005. Further guidance is contained in the ‘Code of practice’ [69] and a supplement to this issued in 2005.[70] A priority for action within the autism strategy 2013–2020 and action plan 2013–2016 is the development of multi-disciplinary, multi-agency approaches to transition.[28]

A government interdepartmental group was set up to take forward strategic developments in the transition process for young people with special educational needs, which includes the needs of young people with autism. The group’s report highlights deficits in transition planning and provides a wide range of actions to make improvements in moving across the spectrum of service provision.[71]