Information, Advocacy and Signposting as a Low-Level Support for Adults with High-Functioning Autism Spectrum Disorder: An Example from the UK

Abstract

‘Low-level’ support is championed to support adults with high functioning autism spectrum disorder (HFASD) to achieve good quality health and social care, yet research in the area is sparse. Drawing on semi-structured interview data, this paper considers the efficacy of an intervention to provide low-level support to adults with HFASD with little or no funded support. The intervention led to a number of perceived positive outcomes for adults with HFASD, their families, and service providers in the city, including increased access to education, volunteering, support and information, socialising, improved health and wellbeing, and managing day-to-day. Although many of life’s difficulties still persisted, the intervention helped service users overcome barriers to availing further support, possibly leading to beneficial outcomes down the line.

Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study

“…At the same time, it is important to note that SAT staff regarded such groups/communities as an important contributor to providing long-term, low-intensity support to autistic adults without LDs (see Chapter 4). This accords with other research, 79,[83][84][85] and the NICE guideline recommends SATs work in partnership with such organisations. To our knowledge, however, there have been no studies of their effectiveness, neither could we find any literature on reach and take-up of such provision.…”

A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults

“…towards services the autistic person needs) has been reported to improve access to a range of services (i.e. education and support) and overall well-being in a non-funded community group (Southby and Robinson 2018). This does suggest that directing autistic people to appropriate services does not entail extra costs, and the result could improve effective access to care for autistic people.…”

Experience of transfer from child to adult mental health services of young people with autism spectrum disorder

“…27 Access to local community expertise around interpersonal support, advice and information, especially if the expertise includes working with young adults with ASD and their families to identify the young people's particular strengths, goals, skills and needs, could help increase participation and reduce this unmet need. 28 Understanding the broader contexts of the young person, possibly beyond the scope of the appointment they are (or are not) attending and the factors that may be making engagement in medication, treatment and clinic appointments more challenging may highlight ways in which they need more support, or areas of priority for the young person at that time.…”

“…It is a secondary analysis of data collected during the Transition Longitudinal study. 28 Although we were not able to undertake in-depth interviews with this relatively large number of young people and parents, we were able to collate accounts from all participants (young people and parents) over a 3-year period using clinical notes and systematically collected information from the annual face-to-face follow-up visits. The comprehensive and consistently collected data has allowed an opportunity to gain some insight into these young people's lived experience of transition.…”