Community Perspective: Hidden Rates of Autistic and Transgender Young People at Risk of Psychiatric Inpatient Admission

Abstract

Research demonstrates that transgender people are more likely to have poorer mental health. In this short report, Dr. Laura Coulthard reflects on her observations whilst working in the National Health Service (NHS) developing the Keyworking service. This service supports young people on the Dynamic Support Register who are autistic and/or have a learning disability and at risk of an inpatient admission. Whilst developing the service, an increasing number of openly transgender young people were identified on the Dynamic Support Register (9.7%). Transgender is a term to describe a person whose gender identity is in some way different from the gender they were assigned at birth and that generally includes anyone who broadly identifies as transgender, gender questioning or non-binary. This short report highlights the extremely limited data on autism and transgender young people at risk of inpatient admissions, and the need for an increased clinical and research focus with this population.

Lay Abstract

What Is Already Known About the Topic?

There is increasing awareness of the intersection between autism, transgender identity and mental health. However, there is extremely limited research that highlights how these three experiences intersect.

What This Paper Adds?

This short report reflects the author's observations while working within the National Health Service (NHS) on the development of the Keyworking service. This service, which is still relatively new, supports young people who are autistic and/or have a learning disability, with a particular focus on those who are at risk of being admitted or currently receiving inpatient care.

Observations suggest that transgender and autistic young people are disproportionately at risk of inpatient admission as recorded on our Dynamic Support Registers, which are an NHS mechanism for preventing avoidable admissions.

This article highlights the absence of prevalence data on this particular group of young people in the UK.

Implications for Practice, Research or Policy

We know that transgender individuals are at increased risk of health inequalities, experience poorer mental health and are more likely to die by suicide. This article calls for improved monitoring of autistic and transgender people across our Dynamic Support Registers and inpatient populations across all ages. By improving the data we collect, health services will be able to better understand and support this group, which would lead to improved training and service provision. These findings highlight the need for targeted support for this vulnerable group, ensuring that both neurodivergence and transgender identity are carefully and sensitively considered in care and treatment plans and in wider service provision.

Over the past decade, the UK has had a significant focus on avoiding psychiatric hospital admissions for people who have a learning disability and/or are autistic. Following the Winterborne Hospital's Serious Case Review (2012), the UK government set out a series of specific actions to transform services to provide more appropriate and higher quality care for children, young people and adults with learning disabilities and/or autism (Department of Health, 2012). A resultant action was for local authority areas to develop Dynamic Support Registers (DSRs) to identify individuals with a diagnosis of a learning disability and/or autism who are at risk of admission to mental health inpatient services. The purpose of the DSR is to ensure the most appropriate community support is offered from statutory services to prevent avoidable admissions and to ensure admissions are not unnecessarily prolonged.

Shortly after this, Dame Lenehen reviewed the systemic failure to deliver appropriate care and support to children and young people with the most complex needs (2017) and proposed practical ways of supporting individuals with multiple intersectional and marginalised needs, including learning disability, autism, mental health and behaviour that challenges others. However, connections with LGBTQ+ were not considered.

Since then, the NHS published the Long Term Plan, which recognised that LGBTQ+ issues do impact upon young people's mental health (NHS England, 2019) (3.28). However, I believe that in our efforts to avoid mental health crises and inpatient admissions for our most vulnerable children, we are continuing to overlook the needs of those who are LGBTQ+, particularly for those who are transgender (a term to describe a person whose gender identity is in some way different to the sex they were assigned at birth and that generally includes anyone who broadly identifies as transgender, gender questioning or non-binary).

What Do We Know About the Needs of These Young People?

In 2022, I worked to strategically support the development of the Keyworker service across the North East and North Cumbia (as proposed by Dame Lenehen) for children and young people under 18 and wanted to ensure our service fully understood the needs of the population we were serving. This role offered an interesting overview of a variety of organisational contexts, as the geographical footprint covered the largest NHS Integrated Commissioning System (ICS) that included 14 different local authority areas and two large NHS Mental Health Trusts.

Once I started scoping the needs of the children and young people being referred to the Keyworker service from the Dynamic Support Registers, I identified what seemed to me, to be a high proportion of young people who openly identified as transgender. Given the increased need for improved LGBTQ+ training for our health staff (Donisi et al., 2020; Zeeman et al., 2019), we needed to know if this was a key service development priority.

Estimated Prevalence of Transgender Young People Across the DSR

During March 2023, I posed three questions to the DSRs across the North East and North Cumbria: (1) how many young people were known to their DSR, (2) were data collected on gender and transgender status, and if so (3) how many young people were openly transgender.

The 14 local authority areas were covered by 8 DSRs. Of these, only 2 DSRs (6 local authority areas) collected data on transgender status, recording preferred pronouns (including they/them), and whether their current gender was different than the sex assigned at birth. Non-binary status was not officially collected but was identified by they/them pronouns. Aggregated data found that across the six areas, of all the young people known who were known to the dynamic support register, (n = 72), 7 (9.7%) were openly transgender, all had received formal diagnoses of autism and none had a diagnosed learning disability.

Estimated Prevalence of Transgender Young People

The World Professional Association for Transgender Health (WPATH) estimates that between 2.5% and 8.4% of children and adolescents are transgender (Coleman et al., 2022), a prevalence lower than in our DSR population.

Despite the relatively small numbers involved in this brief snapshot, these findings suggest that we may well have a disproportionately high number of transgender young people on the DSRs, who are at increased risk of a mental health in-patient admission. It wouldn't be at all surprising if this were the case, given that extensive research findings suggest that transgender youths have significantly higher rates of suicidal ideation and mental distress than cisgender populations (defined as a person whose gender identity correspoonds to that assigned at birth) (Eisenberg et al., 2017; Jadva et al., 2023; Johns et al., 2019; O’Leary et al., 2024; O'Shea et al., 2024; Peterson et al., 2017; Reisner et al., 2015; Testa et al., 2017; Trivedi et al., 2024; Veale et al., 2017).

How Does This Number Compare With Other Inpatient Prevalence Data?

It is difficult to compare these numbers with national averages because national data is virtually non-existent, and we are reliant on limited international prevalence data.

To date, only one study has reviewed the proportion of psychiatric inpatient admissions for transgender youths compared to cisgender youths, examining the psychiatric admission records of adolescents from 2018 to 2021 (Martin et al., 2022). During COVID-19, 10.1% of inpatient adolescents identified as transgender, rising to 11.6% post-quarantine, similar to the numbers on our DSR, again disproportionately higher than the prevalence in the general population. Compared to cisgender adolescents, transgender patients are more likely to be given a diagnosis of depression (46.3% vs. 67.5%) and to have a history of self-injurious behaviour (54.2% vs. 82.5%). During the month of October 2020, transgender inpatients rose to a staggering 20.7%, suggesting that their mental health was disproportionately impacted during the COVID-19 lockdown. Again, this fits with a wealth of research evidence suggesting that LGBTQ+ youths were disproportionately impacted by COVID-19 (Griffin et al., 2023; Kneale & Becares, 2021).

Interviews with young transgender inpatients suggest these figures might under-estimate the true prevalence and identified barriers to ‘coming out about their trans status’ such as inconsistent support from staff, lack of staff training, inconsistency in identifying a patient's transgender identity and organisational issues with data recording (Acosta et al., 2019), barriers that are also present in UK health systems (Watkinson et al., 2024).

Intersectionality of Autism, transgender and Mental Health: A Research Omission

A critical omission in research that examines transgender adolescents and adults is the lack of focus on neuro-developmental diagnoses, particularly autism (Strang et al., 2020) but we are now seeing an increasing number of larger systemic literature reviews highlighting the intersection between autism and transgender identity, at least within the adult population (Bouzy et al., 2023; Mittertreiner et al., 2024). However, there continues to be a dearth of peer-reviewed research between autism, transgender identity and mental health, despite the many published books that focus on these intersectionalities (LGBTQIA + – The Autism Books by Autistic Authors Project).

A large cross-sectional study has identified a statistical overlap between autism, mental health and transgender adults (Warrier et al., 2020), which found that transgender individuals were between 3 and 6 times more likely to be autistic than cisgender individuals and were more likely to self-report undiagnosed autism. Transgender individuals also had higher rates of multiple other neurodevelopmental and psychiatric diagnoses.

Research focusing on children and adolescents has similarly demonstrated increased autism prevalence within gender identity clinics (Skagerberg et al., 2015; Mahfouda et al., 2019; Strauss et al., 2021). In an Australian gender clinic, 22% of adolescents had a formal diagnosis of autism but due to the barriers of professionals identifying neurodivergence within transgender young people, this is likely to be underestimated (Strang et al., 2021) When autistic features were assessed within an adolescent gender-clinic population using the Social Responsiveness Scale (SRS), 50% of youths scored at a level suggestive of an autism diagnosis (Mahfouda et al., 2019). Another study using the SRS within a gender-diverse UK population of adolescents found that 55% of young people expressed autistic traits but only 24% had received a formal diagnosis (Skagerberg et al., 2015). However, many transgender adolescents do not necessarily want to access specialist gender clinics, which might further underestimate figures. Greatly increased numbers of transgender individuals have similarly been identified within general autistic and clinical-autistic populations (Janssen et al., 2016; van der Miesen et al. 2018). Given the limited access to autism assessments in the UK, with people facing waiting lists of up to several years, it seems likely that the true prevalence of autism within gender-diverse populations well may be considerably higher than currently reported.

So Why the Elevated Rates of Severe Mental Health in Our Transgender Young People?

Minority stress theory helps explain the specific mental health inequalities facing LGB+ people, and more recently, this has been adapted to include gender-minority stress (Frost & Meyer, 2023). This provides a framework to understand the layers of stresses and excessive burdens, which result from direct stigma, trauma and discrimination by people, systems and institutions within society (distal stressors) and internalised stigma and discrimination where people reject themselves due to prevailing social norms and expectations and hide identities (proximal stressors). Some specific gender minority stressors have been related to suicidal ideation, such as rejection, non-affirmation, victimization, and discrimination, internalized transphobia, negative expectations, and nondisclosure, thwarted belongingness and perceived burdensomeness (Testa et al., 2017). For autistic young people, these stressors will be further impacted by the additional layers of stigma, discrimination and health inequalities widely identified within neurodivergent populations (Botha & Frost, 2018). For example, compared to autistic-cisgender and non-autistic-transgender groups, autistic-transgender youths had higher stigma-related associations with mental health and autism-related neurodevelopmental factors were associated with worse mental health and greater suicidality (Strang et al., 2023; White et al., 2024).

Why Should We Care?

To date, no one has researched the prevalence of autistic/neurodivergent and transgender inpatients admitted to adolescent mental health services. Given the increased focus on inpatient avoidance, alongside greater knowledge of how these intersect to worsen life-long health inequalities, this seems to be a critical gap in our understanding. The NHS estimates that between 2023 and 2024, the number of bed days for those aged under 18 known to have mental health, learning disabilities, or autism services was 261,688 (NHS England Digital, 2024), at £1500 per night within an NHS low secure unit (NHS National Schedule, 2023/2024). Aside from the ethical imperative of improving outcomes for these vulnerable young people, if many of these admissions are preventable by offering sensitive and inclusive good quality provision and care, the financial savings will certainly be considerable.

The results from my rudimentary service evaluation cannot be easily overlooked. One might be tempted to dismiss these conclusions on the basis that the data are so weak. However, the weakness of the data is itself a key finding that reveals the lack of focus this issue has been given. Available data suggests significantly elevated mental health distress for autistic and transgender youths who are at greater risk of inpatient admissions and suicidal ideation. Sadly, we also know that they are at increased risk of dying by suicide.

Improved data, understanding and knowledge within this area, would lead to better training, support and service provision. It is essential that we avoid any young person taking their own life because of our failure to see them and thus to know how to help.