Title: How should health services adapt to meet the needs of autistic people with gender dysphoria?
Funder: Health Education England

Abstract: Background Gender dysphoria (GD), is distress relating to a discrepancy between one's gender identity and sex assigned at birth, and is associated with suicidality and poor mental health. A disproportionate number of attendees at gender clinics (13.3%) have an Autism Spectrum Disorder (ASD), a neurodevelopmental condition present in 1% of the population and defined by deficits in social communication and repetitive behaviours and interests. The NHS has been found to be providing inadequate care to both autistic people and to adults with GD, and there is little research on ASD and GD to guide service improvements for this group.Aim To develop guidelines for NHS services to adapt to meet the needs of this group, by answering the following questions: How does autism affect the presentation and phenomenology of GD? What are the barriers to autistic young people and adults receiving the right support for GD? How could the NHS better meet the needs of those with autism and GD? Methods Qualitative methods will be employed due to the exploratory nature and experiential focus of the research questions. Semi-structured interviews adapted for autistic participants will be analysed using a contextualist thematic approach. Study 1 will be a systematic review of qualitative studies investigating the phenomenology of gender dysphoria in non-autistic people. The search strategy will be pre-determined and studies selected based on inclusion and exclusion criteria. Data regarding the phenomenology of GD in non-autistic people will be extracted using a standardised table. Study 2 will be a qualitative investigation of the phenomenology of GD in autism. Purposive sampling will be used to recruit 20-30 autistic adults with GD for 60 minute interviews. Recruitment will end when data saturation is achieved. The themes will be compared with Study 1 to assess how the phenomenology of GD is different in autism compared to non-autistic individuals. Study 3 will investigate the experiences of autistic people accessing NHS services for GD, with a focus on barriers. Three groups will be recruited, autistic 12-18 year olds (n=20-30), their carers (n=10), and autistic adults (n=20-30). Two qualitative analyses will be conducted, one for young people and carers and the other for adults.Study 4 will qualitatively investigate the views of NHS clinicians on the topics of Studies 2-3. At least three focus groups will be held with clinicians (n=15-24) who work in child and adult gender clinics and CAMHS services. The results will be used to co-produce guidelines with the PPI group which will inform NHS clinicians how GD presents differently in autistic people, key risk issues, and barriers to this group receiving adequate healthcare. Impact and Dissemination The research will be published in high impact journals and at international conferences. The PPI group will produce a dissemination plan for the ASD and GD communities. The guidelines will be disseminated to relevant NHS services in partnership with the PPI group. The research will lead to the improved identification, quality of care and risk management provided to young people and adults with these conditions.

Lay abstract: Background Transgender is a term used to describe people with gender identities which are different to their birth sex. Gender dysphoria is a term which describes a subset of transgender people who experience distress in relation to their gender identity. The NHS provides Gender Identity Clinics which offer treatment to this group. At least 13.3% of people accessing gender clinics have autism, a life-long developmental condition defined by impaired social communication and repetitive behaviours, interests or activities. As the rate of autism in the general population is 1%, autistic people are significantly over-represented in gender clinics. However, there is little research about what it is like to be transgender and have autism. There is evidence that the NHS is letting down autistic people and transgender adults. Furthermore, autistic people have more complex health needs and die on average 16 years younger than non-autistic people. However, autistic people often fall between the gaps of services and do not get the support they need. This study will ensure that autistic people with gender dysphoria get the right support. It will help NHS clinicians to better understand the needs of this group. Aim To develop guidelines for NHS services to adapt to meet the needs autistic people with gender dysphoria, by answering the following questions: What is it like for autistic people to have gender dysphoria? What are the barriers to autistic young people and adults receiving the right support for gender dysphoria? How could the NHS better meet the needs of this group? Plan 1. I will systematically review the existing research about the experience of gender dysphoria in non-autistic people. 2. I will interview 20-30 autistic adults who have gender dysphoria. The interviews will be about what it is like to have autism and gender dysphoria. I will compare the results with those from study 1 to show how gender dysphoria is different for autistic people, demonstrating what autism adaptations are needed to NHS services.3. I will interview 20-30 autistic young people, 8-10 carers and 20-30 autistic adults who have gender dysphoria. The interviews will identify barriers to autistic people accessing NHS services for gender dysphoria. 4. I will investigate the opinions of NHS clinicians who work with autistic people with gender dysphoria to see what barriers they have experienced in working with this group and what they need to know to do their jobs better. 5. I will present the research findings to a group of transgender autistic people who will help to design guidelines on autism and gender dysphoria. The guidelines will be for clinicians working with autistic people with gender dysphoria of all ages. The guidelines will highlight the issues unique to this group, raise awareness of barriers to services, and improve the quality of care provided to this group in the NHS. Patient and Public Involvement (PPI) I will meet regularly with a group of transgender autistic people to keep them informed of the research as it develops, to develop interview questions and to share the results with the wider community. Sharing the results Members of the PPI group will be invited to co-deliver training on the guidelines to NHS services. Additionally, the PPI group will help to develop a plan to share the results with autistic people and those with gender dysphoria in the most accessible formats. I will publish the results in journals and present them at academic conferences. I will offer training on the guidelines to NHS gender and autism services. This will improve the quality of care provided to young people and adults with gender dysphoria and autism.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH