Improving mental health in autistic young adults: a qualitative study exploring help-seeking barriers in UK primary care

Abstract

BackgroundAutistic people are at increased risk of developing mental health problems. To reduce the negative impact of living with autism in a non-autistic world, efforts to improve take-up and access to care, and support in early years, which will typically start with a GP appointment, must be grounded in the accounts of autistic young adults.AimTo explore how autistic young adults understand and manage mental health problems; and to consider help seeking as a focus.Design and settingA cross-sectional, qualitative study. Autistic participants were purposively selected to represent a range of mental health conditions including anxiety and depression. A subsample were recruited from a population cohort screened for autism in childhood. The study concerns access to primary care.MethodNineteen autistic young adults without learning disabilities, aged 23 or 24 years, were recruited. In-depth, semi-structured interviews explored how they understood and managed mental health problems. Data were analysed thematically.ResultsYoung adults preferred self-management strategies. Multiple factors contributed to a focus on self-management, including: beliefs about the aetiology of mental health difficulties and increased vulnerability with the context of a diagnosis of autism, knowledge of self-management, and a view that formal support was unavailable or inadequate. Families had limited awareness of professional support.ConclusionYoung autistic adults without learning disabilities, and their families, may hold erroneous beliefs about autism and mental health. This may affect help seeking and contribute to an exacerbation of symptoms. GPs need to be alert to the fact that autistic young adults in their care may be experiencing mental health difficulties but may not recognise them as such.

Lower help-seeking intentions and subsequent depressive symptoms among adolescents with high autistic traits: A population-based cohort study

“…Our findings were consistent with self-reports of difficulty or reluctancy towards seeking help for mental health problems among adults with autism. (7, 8) We confirmed that, in the community setting, this lack of help-seeking intention was already present in early adolescence (i.e., by age 12) among adolescents with high autistic traits.…”

“…Previous qualitative studies reported that autistic adults had difficulties expressing their emotional distress to others, negative views on help-seeking based on their past experiences, and concerns over stigma attached to mental illness. (7, 8) Investigating into these possible mechanisms was beyond the scope of our study; however, these factors could have played a role in forming attitudes toward help-seeking among adolescents with high autistic traits. Clarifying the pathway to decreased help-seeking intentions among adolescents with high autistic traits will offer additional implications as to when and how tailored interventions can be implemented to promote help-seeking in this population.…”

“…(6) However, qualitative studies have shown that even in countries with good access to health care, autistic individuals report a reluctance towards seeking help for their mental health problems, partly due to their difficulties in recognising the need for help and increased self-reliance. (7, 8) Furthermore, most previous studies on help-seeking and mental health problems were cross-sectional, (9, 10) and there is limited evidence as to whether help-seeking intentions influence subsequent mental health problems, within or outside of the context of autism. Therefore, improving our understanding of help-seeking intentions and their role in preventing subsequent depressive symptoms among individuals with high levels of autistic traits, including those who are undiagnosed, can help develop preventive interventions in this population.…”

The Role of Informal Sources of Help In Young People’s Access To, Engagement With, And Maintenance In Professional Mental Health Care—A Scoping Review

“…The most common country of research was Australia (n = 11) (Burns & Rapee, 2006;Gilchrist & Sullivan, 2006;Jorm et al 2007;DeAnstiss & Ziaian, 2010;Hernan et al 2010;Medlow et al 2010;Yap et al 2013;Lubman et al 2017;Valibhoy et al 2017;Maiuolo et al 2019;Pearson & Hyde, 2021) followed by the United States of America (n = 6) (Draucker, 2005;Freedenthal & Stiffman, 2007;Ellis et al 2010;Schmeelk-Cone et al 2012;Damian et al 2018;Wang et al 2020). The remaining studies included five from the United Kingdom (Fox & Butler, 2007;Quinn et al 2009;Klineberg et al 2011;Coleman-Fountain et al 2020;Breslin et al 2022)…”

“…Research from Australia by Pearson & Hyde (2021) suggests that the preference to seek help from family and friends for a mental health problem might be due to barriers such as poor mental health literacy. However, other research would suggest that since young people have genuine fears about the unknown processes of mental health help-seeking with unfamiliar professionals in a service, this preference for help-seeking to family and friends might be due to the nature of informal relationships which often provide easy and immediate access to familiar, trusting, and predictable support (Lindsey & Kalafat, 1998;Freedenthal & Stiffman, 2007;Coleman-Fountain et al 2020;Lynch et al 2021). Furthermore, not all young people have access to professional services and so families and friends are often essential helpers for youth in rural communities (Hernan et al 2010), youth experiencing marginalisation, or those who live in communities with differing conceptualisations of mental health living within a majority western culture (Freedenthal and Stiffman, 2007;De Anstiss & Ziaian, 2010;Ellis et al 2010;Valibhoy et al 2017).…”