Abstract
For young people with autism spectrum disorder (ASD), the transition from childhood to adulthood especially for those with additional mental health problems can be challenging. Increasing numbers of young people attending child and adolescent mental health services (CAMHS) have a recognised diagnosis of ASD. What are the outcomes of these young people when they are discharged from CAMHS and how best can services support their needs? In this editorial we consider the emerging literature on transition for young people with long-term conditions and in particular those with ASD. Longer term studies suggest that the outcomes for individuals with ASD across the ability range is mostly poor and that healthcare transfer has generally not been managed well, with service users often reporting a lack of appropriate types of support. Encouragingly there is an increasing awareness of the need to support young people with long-term conditions as they negotiate the many developmental tasks of transition to adulthood. However, less is known about the experiences and aspirations of autistic individuals of all abilities as they transition to adulthood. This knowledge can inform a more nuanced approach to identifying developmentally appropriate outcomes. Recent studies with cognitively able young people with ASD, highlight some features in common with young people with long-term conditions but also the importance of identifying ways to foster underlying skills and the ability of young people with ASD to develop and maintain relationships. Child-focussed and adult-orientated healthcare services need to work directly with autistic individuals and their support networks to facilitate successful engagement with services and enable adults to manage their mental health needs. There is an urgent need to investigate the implementation and effectiveness of research and clinical guideline recommendations that aim to increase wellbeing, health self-efficacy and improve the mental health outcomes for autistic adults.
Highlights
1% of the population (Williams et al, 2006; Elsabbagh et al, 2012) have a diagnosis of autism spectrum disorder (ASD)
The longitudinal Transition study (Colver et al, 2019) provided an opportunity to compare the experiences of young people with ASD attending child and adolescent mental health services (CAMHS) with those with diabetes and cerebral palsy
Healthcare transfer for 65% of young people with ASD was to primary care compared to over 90% of young people with diabetes who transferred to secondary adult healthcare services
Summary
1% of the population (Williams et al, 2006; Elsabbagh et al, 2012) have a diagnosis of autism spectrum disorder (ASD). The programme included a 3-year longitudinal study of 374 young people with long-term conditions (diabetes, cerebral palsy and ASD with additional mental health problem) using generic outcomes such as subjective wellbeing, participation, satisfaction with services and condition-specific measures of disease control (Colver et al, 2019). 1/3 of young people across all groups experienced appropriate parental involvement; 1/4 of young people with ASD reported experiencing support with health self-efficacy and only a 1/4 had met the adult team (similar findings for young people with cerebral palsy) compared with two-thirds of young people with diabetes The generalisability of these findings is limited as the sample was relatively young (17–21 years at final follow-up) and all were considered by their referring clinicians to be of average intellectual ability. These findings emphasise the need to individualise transition planning for each young person including consideration of their communication needs and skills
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