Transition to Adult Services and Adulthood for Young People with Autistic Spectrum Conditions (Working paper no: DH 2525, Department of Health Policy Research Programme Project reference no. 016 0108, Final Report)
Year: 2013
Type: other
Abstract: vi interviews with parents/carers of young people with autistic spectrum conditions (aged 16 -24 years); and an analysis of the costs of providing transition support in each of the research sites.The survey of parents and young people yielded very low responses rates and was extremely variable between research sites.This severely compromised the way the data could be analysed and hence the achievement of some research objectives.Specifically, we could not explore and compare families' 'post-transition' outcomes against the different models of transition planning and support in place in the research sites.In addition, not all research sites provided adequate financial data.This lack of data, coupled with the low response to the family survey, significantly restricted the work we could do on costs. Key findings The transition pathways and planning for leaving schoolSome research sites had systems and structures in place which sought to ensure all young people with a diagnosis of ASC were receiving some sort of support during transition.However, in other sites it was evident that young people with HFA and AS were not eligible for support from transition teams and thus were vulnerable to planning and preparing for leaving school with no ASC-specific input or support.Experiences of planning for leaving school were mixed -both for those families who had experienced transition planning within statutory SEN/transition planning processes and those who had not.The lack of post-school options and, for those ineligible for adult social care, the lack of support was the issue of greatest concern to parents and practitioners.Parents and practitioners noted that level of cognitive ability per se, did not necessarily act as an indicator of the degree to which a young person was able or willing to engage in planning around leaving school and taking responsibility for moving towards adulthood.They also noted that, for young people with ASC, involvement in planning could be stressful and challenging in itself.involvement in their lives were not, typically, unwanted.However, this was not a role parents typically wanted to assume. Implications for policy and practice Transition planning, strategies and processesYoung people ineligible for support from children's services and without a SEN, including young people with HFA and Asperger's syndrome, are at risk of being invisible to strategic groups and commissioners of adult statutory services.Undergoing transition in the absence of appropriate support can affect young people's outcomes in adulthood and thus needs to be addressed.Transition planning practices, for example person-centred planning, need to take account and be responsive to ASC-specific issues which may interfere with transition planning, for example, social anxiety, aversion to change.Practitioners need to be knowledgeable and skilled in working with young people with ASC, including HFA and AS.The move from further education Support and advice in planning for the move from further education into employment or other settings was largely absent and needs to be addressed. Continuity of mental health support at a time of changeThe loss of, or interruption in, mental health support at a time of, potentially, considerable change in other areas of a young person's life, appears counter-intuitive.Work to identify service models which ensure continuity of mental health support (and thus also removing the need to develop new therapeutic relationships) over late teenage and early adulthood is recommended. Services and support for young adultsThis and other research call for 'low intensity', early intervention/preventative holistic support for young people with HFA and AS, and believe that this can be cost effective (National Audit Office, 2009).Crucially, any study of effectiveness needs to take a crossagency view on costs and cost-effectiveness.The lack of meaningful daytime activities for young adults with ASC placed considerable organisational, time and financial burdens on parents as they sought to 'create' a meaningful life for their child.Some third sector organisations were providing day services and peer support opportunities for those with ASC, particularly those with HFA or AS.Whilst some might baulk at specialist, non-inclusive provision, some of the young people we interviewed were very clear that they preferred spending time in such settings which they saw as 'normalising' them.It is important that these are investigated and evaluated.Overall, experiences of employment were disappointingly low and, where achieved, there was a sense of fragility.Access to specialist employment support did not appear adequate, and experiences of mainstream job support by young people with HFA and AS suggested a lack of expertise and understanding of HFA and AS among frontline staff.Voluntary work placements in settings where ASC was understood and accommodated were consistently viewed very positively by the young people interviewed.Further consideration of the strategic and planned use of such placements, and their impact on longer-term outcomes, may be productive.1 Chapter 1 IntroductionThe research described in this report compliments an earlier project commissioned by the Department on Health on transition to adult services for disabled young people and those with complex health needs (Sloper et al., 2010) (referred to subsequently as the 'Disability and complex health needs transition project').Whilst young people with autistic spectrum conditions, and particularly those with learning difficulties, were included in that project, the Department of Health was keen to commission a further project specifically looking into transitions for young people with autistic spectrum conditions.The Department of Health wanted this new project to cover young people across the entire autistic spectrum including those with high functioning autism and Asperger's syndrome.In order to facilitate comparisons of research findings, the research design, methods and research instruments used in the Sloper et al. (2010) study were adopted, with some adaptations, for this new study. Terminology and abbreviationsWe use the term autistic spectrum conditions (ASC) when referring to the entire autistic spectrum.We explicitly make it clear when distinguishing between those with ASC and learning difficulties and those with higher levels of cognitive ability and functioning using the diagnostic terms used for this end of the spectrum, namely: high functioning autism (HFA) and Asperger's syndrome (AS).Throughout this report, we use the term 'transition team' to refer to the statutory team tasked with transition planning for young disabled people.The term 'transition service' is used to describe the work undertaken by the transition team, including transition planning and support into adulthood.Finally, we use the term 'transition support' is used to describe support to young people/young adults with ASC during the transition period (~14-25 years) that is provided by statutory and non-statutory services, agencies and organisations other than the transition team
Authors: Bryony Beresford, Nicola Moran, Patricia Sloper, Linda Cusworth, Wendy Mitchell, Gemma Spiers, Kath Weston, Jennifer Beecham
Language: English
Subfield: Education
Field: Social Sciences
Domain: Social Sciences
Open Access status: green
OpenAlex ID: W2808053608