Epidemiology and Psychiatric How should we support young people with ASD

Sciences
and mental health problems as they navigate
cambridge.org/eps the transition to adult life including access to
adult healthcare services
Editorial Christopher King1, Hannah Merrick2 and Ann Le Couteur2
Cite this article: King C, Merrick H, Le Couteur 1
Tees, Esk and Wear Valleys, NHS Foundation Trust, Tees, Esk and Wear Valleys, UK and 2Population Health
A (2020). How should we support young
Sciences Institute, Newcastle University, Newcastle upon Tyne, UK
people with ASD and mental health problems
as they navigate the transition to adult life
including access to adult healthcare services. Abstract
Epidemiology and Psychiatric Sciences 29, e90,
1–5. https://doi.org/10.1017/
For young people with autism spectrum disorder (ASD), the transition from childhood to
S2045796019000830 adulthood especially for those with additional mental health problems can be challenging.
Increasing numbers of young people attending child and adolescent mental health services
Received: 18 November 2019 (CAMHS) have a recognised diagnosis of ASD. What are the outcomes of these young people
Accepted: 30 November 2019
when they are discharged from CAMHS and how best can services support their needs? In
Key words: this editorial we consider the emerging literature on transition for young people with long-
Autism spectrum disorder; developmentally term conditions and in particular those with ASD. Longer term studies suggest that the out-
appropriate; transition; wellbeing comes for individuals with ASD across the ability range is mostly poor and that healthcare
Author for correspondence:
transfer has generally not been managed well, with service users often reporting a lack of
Ann Le Couteur, E-mail: a.s.le-couteur@ appropriate types of support. Encouragingly there is an increasing awareness of the need to
newcastle.ac.uk 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 com-
mon 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.

Introduction
Approximately 1% of the population (Williams et al., 2006; Elsabbagh et al., 2012) have a diag-
nosis of autism spectrum disorder (ASD). ASD in both childhood and adulthood is charac-
terised by a spectrum of skills and needs, including impairments in social communication,
and the presence of restricted and repetitive behaviours and interests (American Psychiatric
Association, 2013). In addition, many individuals also meet criteria for co-occurring psychi-
atric conditions at a significantly higher rate compared to non-autistic populations
(Simonoff et al., 2013). The conditions include attention deficit hyperactivity disorder
(ADHD), anxiety and emotional disorders, and oppositional defiant disorder (Billstedt
et al., 2005; Leyfer et al., 2006; Simonoff et al., 2013; Lever and Geurts, 2016). Not all indivi-
duals with ASD are diagnosed in childhood. Some individuals present to adult mental health
services (AMHS) for an ASD diagnostic assessment, often with co-occurring physical and
mental health needs (Brugha et al., 2012). There is an increasing recognition that primary
health care (family practitioner) and community mental health services require the relevant
© The Author(s) 2020. This is an Open Access expertise and resources to provide diagnostic assessment and intervention services appropriate
article, distributed under the terms of the for individuals of all ages presenting with a definite or suspected ASD diagnosis (Department
Creative Commons Attribution licence (http://
creativecommons.org/licenses/by/4.0/), which
of Health, 2015).
permits unrestricted re-use, distribution, and
reproduction in any medium, provided the
original work is properly cited. Transition
Transition from childhood to adulthood is a period of development characterised by signifi-
cant change of both the brain and behaviour (Colver and Longwell, 2013). The developmental
tasks include leaving school, moving to post-secondary education or employment, gaining
autonomy and independent living skills, and developing adult friendships and intimate
2 Christopher King et al.

relationships. The timescales vary, but the implication for services careful co-ordination within and between services – a definite
is that transition extends from approximately 16–24 years (Colver challenge for existing funding organisations and service providers.
et al., 2018, 2019). The programme also included an exploration with young people
of their attitudes to transition. Four broad approaches were iden-
tified: ‘laid-back’, ‘anxious’, ‘wanting to be in control’ and
Definitions for healthcare services
‘socially-oriented’. These findings emphasise the need to indi-
‘Transition’ refers to the purposeful, planned process that vidualise transition planning for each young person including
addresses the needs of young people in a holistic way as they consideration of their communication needs and skills.
move from child-centred to adult-oriented health care systems
(Blum et al., 1993). In contrast, a ‘transfer’ is the singular event
What are the transition experiences of young people who
when medical care of a young person is moved from children’s
attend CAMHS?
to adults’ services. For example, the transfer from child and ado-
lescent mental health services (CAMHS) to AMHS in the UK Most young people with mental health problems in England
occurs at the age of 18 years (range 16–18 years). and Wales attending CAMHS are discharged to primary care
services rather than being referred to AMHS (Singh et al.,
2010). For some, transfer of healthcare to primary care will be
Transition experiences for young people with long-term
a positive and appropriate experience. For others, their mental
conditions
health problems do not suddenly change, they cannot access
Unfortunately, for many young people with long-term conditions an ongoing mental health service and experience a discontinu-
during transition their health may deteriorate and social partici- ity of care provision (NICE, 2016). Accessing AMHS requires
pation reduce. Studies of young adults with a range of disorders the young person to have an ‘enduring mental health problem’
have demonstrated delays in autonomy, psychosexual and social (Singh et al., 2008). There is evidence from the UK Transition
development (Pinquart, 2014). These problems have been recog- of Care from CAMHS to AMHS (TRACK) study that some
nised internationally (NICE, 2016; Mazur et al., 2017; White et al., young people with a range of mental health problems, including
2018). Publications highlight the importance of early planning, ASD, ADHD, emotional disorders and emerging personality
continuity of care and the need to consider developmental disorders, have limited access to AMHS (Singh et al., 2010;
needs rather than simply defining an age cut-off healthcare trans- Paul et al., 2013).
fer. The UK National Institute for Health and Care Excellence In a secondary analysis of the TRACK data, Islam et al. (2016)
(NICE) guidelines recommend that: transition support must be studied a subsample of 64 young people with ongoing mental
developmentally appropriate and person-centred; young people health needs ( just over a third of the original cohort) who were
should have a named worker and meet the adult team before not transferred to AMHS. Twenty-three percent of this sample
transfer; support for building independence and appropriate had a neurodevelopmental disorder. Whilst 11% were unsuccess-
involvement of parents/carers (NICE, 2016). fully referred, the majority had NOT been referred. A small pro-
The evidence base supporting recommendations has been lim- portion of cases were referred to other services, usually together
ited. A recently completed 5-year programme of applied health with a referral to primary care. Over half of those who were not
research on transition has attempted to address this knowledge transferred to AMHS remained open to CAMHS services beyond
gap. The programme included a 3-year longitudinal study of the age for transition. The most common reason for non-referral
374 young people with long-term conditions (diabetes, cerebral was refusal by the young people/carer or resolution of the clinical
palsy and ASD with additional mental health problem) using gen- need. Other reasons included disengagement from CAMHS; an
eric outcomes such as subjective wellbeing, participation, satisfac- assumption that the young people’s mental health needs would
tion with services and condition-specific measures of disease not meet AMHS criteria; AMHS perceived to not have the
control (Colver et al., 2019). Three features of transitional health- required expertise; or transfer was delayed because of unknown
care were associated with improved outcomes: appropriate parent/ immigration status. This study highlights the risk that young peo-
carer involvement (defined jointly by the young person and par- ple with ASD, and others, may fail to access secondary mental
ent); promotion of health self-efficacy and meeting the adult team health services and/or other relevant support at a time of
before transfer. Only 1/3 of young people across all groups experi- increased uncertainty and risk.
enced appropriate parental involvement; 1/4 of young people with The longitudinal Transition study (Colver et al., 2019) pro-
ASD reported experiencing support with health self-efficacy and vided an opportunity to compare the experiences of young people
only a 1/4 had met the adult team (similar findings for young with ASD attending CAMHS with those with diabetes and cere-
people with cerebral palsy) compared with two-thirds of young bral palsy. Healthcare transfer for 65% of young people with
people with diabetes. The generalisability of these findings is lim- ASD was to primary care compared to over 90% of young people
ited as the sample was relatively young (17–21 years at final with diabetes who transferred to secondary adult healthcare ser-
follow-up) and all were considered by their referring clinicians vices. At the beginning of the study young people and their par-
to be of average intellectual ability. However, the findings do pro- ents (across all groups) were relatively satisfied with the services
vide sufficient evidence to support the urgent need to investigate they were receiving. Over the course of the study the young people
how best to implement these relatively straightforward features of with cerebral palsy and with ASD became increasingly dissatisfied
transitional healthcare. Other findings highlight the importance with services. Across all groups parents were usually more dissat-
of organisation-wide training in ‘developmentally appropriate isfied than young people (Colver et al., 2018). Despite this, the
healthcare’; and the need for transitional healthcare to be funded wellbeing of young people with diabetes (measured by the
and organised across child and adult healthcare providers, work- Warwick-Edinburgh mental well-being scale; Clarke et al., 2011)
ing in close partnership with primary care and community ser- was within the average range for the general population. The
vices. Implementation of these recommendations requires scores for young people with cerebral palsy and ASD showed
Epidemiology and Psychiatric Sciences 3

significantly poorer wellbeing, which persisted throughout the who have mental health problems (Cappadocia et al., 2012).
follow-up period. The young people with ASD had the lowest Following on from school, many face difficulties with low rates
wellbeing scores by the end of the study. of post-secondary education and employment (Shattuck et al.,
The condition specific outcome measure for the ASD sample 2012). Indeed, young adults aged 19–26 with ASD without intel-
was the Hospital Anxiety and Depression Scale (HADS) – a 14 lectual disability (ID) are more likely than those with ID to have
item self-report questionnaire designed to measure mental health no daytime activities (Taylor and Seltzer, 2011; Taylor et al.,
symptoms in the week prior to the research visit (Zigmond and 2015). Young people with ASD are reported to be less likely to
Snaith, 1983). An initial validation study of older adolescents be living independently (Howlin and Moss, 2012; Lake et al.,
and young adults with ASD has shown excellent psychometric 2014), are socially isolated (Lounds Taylor et al., 2017) and
properties (Uljarević et al., 2018). At each visit over the 3-years experience difficulties forming friendships and long-term rela-
nearly 60% of young people had abnormal or borderline abnor- tionships, including those who achieve a relatively high educa-
mal HADS anxiety scores. tional level (Hofvander et al., 2009). Autistic adults self-report
A subsequent secondary analysis of outcome measures, high rates of loneliness (Hedley et al., 2018) and the experience
follow-up visits and clinical notes was undertaken to investigate of social disconnectedness and feeling a burden on others
predictors of transfer to AMHS, and explore young peoples’ (Pelton and Cassidy, 2017). All these factors are likely to contrib-
experiences of transition (Colver et al., 2019). A diagnosis of ute to the high rates of comorbid psychiatric diagnoses (Taylor
ADHD and taking medication were the best predictors of transfer and Seltzer, 2011).
to AMHS. A thematic analysis identified seven categories: con- However, the broader social and economic context for young
cerns about ASD/developmental and adolescent issues; engage- adults is changing, especially in developed economies, with
ment; family involvement; access to support services, more instability and uncertainty (Arnett, 2007; Wyn, 2014).
educational and post-schooling opportunities; impact of mental These factors may also contribute to the anxiety expressed by par-
health and crisis including self-harm. Using the young person’s ents (Sosnowy et al., 2018) and teachers (Elias et al., 2019) about
HADS scores three mental health trajectories were identified: the futures for autistic adults. Recent studies reporting the direct
doing well; continuing moderate difficulty and not doing well. experiences of cognitively able autistic young people and adults
A number of features were identified amongst the young provide new insights into their ambitions and transitional experi-
people with the most positive outcomes including successful ences (Cribb et al., 2019; Lambe et al., 2019). In the Sosnowy et al.
engagement by the young person (and their family) with services (2018) study, although young people with ASD had some similar/
(school counsellors, social services and mental health services). equivalent long-term goals (e.g. finding post-secondary education
Compared with those who had poorer outcomes, the young or employment and/or leaving home), they focussed more on the
people in the ‘doing well’ group had experienced relative stabil- steps towards achieving an outcome and/or gaining developmen-
ity in educational provision and family life. There was also evi- tal precursor skills (e.g. understanding about how to make deci-
dence that the young people were gaining skills in social sions for themselves). Cribb et al.’s (2019) qualitative study
participation, learning to manage their mental health concerns, identified a group of young people seen in childhood and inter-
developing an awareness of the impact of their ASD and learn- viewed 12 years later. The thematic analysis identified that the
ing to negotiate, with support, some of the developmentally young people (at age 16–20 years) felt more in control of their
appropriate aspects of transition. However, the young people own lives, needed to take one step at a time and valued their
who had successfully moved on to university did not meet cri- ‘social connections with others’. These studies highlight the
teria for the ‘doing well’ trajectory. They reported struggling to importance of the wider context for the young person and that
adjust to the challenging academic and social educational acknowledging the pace of change is likely to promote wellbeing
environments. and a sense of self-identity. Minimising the impact of disruption
For some young people the discharge to primary care was not of mental health provision or loss of support also appeared to
successful with crisis team involvement and time-limited support promote continuation of underlying skills development and the
from AMHS before being discharged again. A common concern ability of young people with ASD to make and maintain
raised by families and young people was their perceived lack of relationships.
support and ‘unmet need’ – much more common in the poorer In a mixed methods study Beresford et al. (2013) explored
outcome groups. These findings are in keeping with other young people’s and parents’ experiences of transition planning
research where young people of average ability are unable to and healthcare transfer. The lack of post-school options, espe-
access community learning disability, or other community spe- cially amongst the cognitively able students ineligible for adult
cialist and mental health support. For all groups the importance social care, and the lack of support caused greatest concern for
of positive parent support was clear, with parents taking on parents and practitioners. For the authors, loss/interruption of
roles co-ordinating support and in some cases providing employ- mental health support at a time of change in so many areas of
ment opportunities. The poorer outcome groups were charac- the young person’s life appeared counter-intuitive. Cognitive abil-
terised by poor attendance and compliance with treatment, ity was not an indicator of the degree in which the young person
more significant impact of their ASD on progress, negative experi- was able or willing to engage in planning and take on responsibil-
ences with services leading to longer term disengagement, and ity for moving forward towards adulthood. For many, involve-
young people not able to access services offered. ment in planning was stressful and challenging. Further, the
lack of daytime activities had a negative impact on wellbeing.
Recommendations included the need for a ‘coordinator’ role to
Difficulties faced by young people with ASD
provide emotional support, anticipate preparatory skills and
Prior to transition some young people with ASD experience bully- co-ordinate decision-making. Parents, not professionals, emerged
ing in school, especially those with more severe impairments in as the most significant and valued source of support (Mitchell and
social skills, additional mental health problems and parents/carers Beresford, 2014).
4 Christopher King et al.

How can we better support young people with ASD through about ASD, mental health problems and a sense that their needs are
transition? unmet, the risk is that they have a negative experience of transition,
disengage with services, present in crisis and are unable to access
Young people with ASD have a wide range of skills and needs but as
any services and support offered to them. Perhaps the use of a
a group they can face multiple difficulties through childhood and
tool such as the HADS might help identify those individuals espe-
into adulthood. These problems inevitably impact on achieving
cially at risk of negative outcomes and crisis presentations. With the
social independence. For autistic young people, individual func-
pressure on CAMHS resources, identifying and prioritising the
tioning (including cognition, communication, independence and
needs of those young people at greatest risk of poor outcomes
severity of ASD) is a strong predictor of outcome (Kirby et al.,
might be of benefit if it allows clinicians to support these young peo-
2016). However, new evidence supports the need to appreciate
ple to identify their own transition goals for participation and future
skill differences as well as deficits. Differences in cognitive function-
social relationships before they disengage with services and/or are
ing might include social processing strengths and constructing per-
discharged from CAMHS.
sonally significant narrative constructs, through to gender
differences in mentalising all factors relevant to social outcomes. Acknowledgement. None.
Further, it is important to appreciate what a ‘good outcome’
Financial support. None.
means for each young person and whether traditional outcomes
of transition are developmentally appropriate, especially when the Conflict of interest. None expressed by the authors. CK was a Specialty
pressure of striving to achieve such social outcomes in the absence Registrar in Child and Adolescent Psychiatry, Northern Regional Child &
of support from adult services may be detrimental to wellbeing. Adolescent Psychiatry training scheme, HM was a full time research associate
Intervention programmes for autistic adults that focus on an indi- and ALC a co-applicant on the Transition research programme grant funded
vidual’s ability to develop social networks and friendships, and by the National Institute for Health Research (NIHR) under the Programme
Grants for Applied Research (RP-PG-0620-10112). The views in this editorial
their underlying skills including planning and decision making,
are those of the authors and not necessarily those of the NHS, NIHR or the
have been reported to lead to greater confidence in accessing social Department of Health.
support (Oswald et al., 2018). These types of approaches may assist
young people to manage their own health needs and learn how to
navigate available service provision (health self-efficacy). References
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