Gender dysphoria and Autism

• Research type

  Research Study

• Full title

  Should health services be adapted to meet the needs of autistic people with gender dysphoria?

• IRAS ID

  262518

• Contact name

  Kate Cooper

• Contact email

  K.cooper@bath.ac.uk

• Sponsor organisation

  University of Bath

• Duration of Study in the UK

  2 years, 0 months, 1 days

• Research summary

  Summary Of Research
  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.

  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.

  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 conduct research to answer the following questions:

  1. What is it like for autistic people to have gender dysphoria?
  2. What are the barriers to autistic young people and adults receiving the right support for gender dysphoria?

  Plan

  1. I will recruit 20-30 autistic adults who have gender dysphoria and ask them to fill out some questionnaires about their gender identity and mental health. I will invite them to be interviewed about what it is like to have autism and gender dysphoria. They will be invited to a further interview of their experiences of accessing services for gender dysphoria.

  2. I will recruit 20-30 autistic young people who have gender dysphoria and their parents or carers. The young people will be asked to fill in questionnaires about their gender identity and mental health. The interviews will be about the experience of gender dysphoria, and the experience of accessing NHS services for gender dysphoria. The parents will be asked to take part in an interview about their experiences of parenting a young person with gender dysphoria.

  Summary of Results
  We aimed to answer two main questions:

  What is the lived experience of gender dysphoria in autistic teenagers and adults?
  How should NHS clinicians adapt their practice to support this group?

  We interviewed 68 people to find out the answers to these questions. These people belonged to five different groups. These were:

  - Autistic adults who had experienced gender dysphoria
  - Autistic young people who had experienced gender dysphoria
  - Parents of the young people
  - Clinicians who work with autistic adults with gender dysphoria
  - Clinicians who work with autistic young people with gender dysphoria

  We analysed the interviews to generate the main themes. Members of the different groups agreed that there was often an interaction between gender dysphoria and features of autism such as sensory sensitivities. There was generally agreement across groups about the need for autism adaptations to be made in gender clinics. Autistic adults were more likely to see autism as an important part of their identity than young people. Both autistic adults and teenagers were clear that autism did not impair their understanding of gender. In contrast, some parents and clinicians working with young people expressed concern that autism did impact self-understanding.

  All groups agreed that some adaptations are needed for this group in healthcare settings. These ranged from changes to clinician communication style, appointment set-up, and clinic environment. Along with a group of autistic and transgender people, we developed:

  - Illustrated accessible research summaries
  - Pre-clinic autism worksheet to help clinicians learn about autism-related needs in their patients
  - Videos about the experience of gender dysphoria in autism
  - Two training videos aimed at NHS clinicians who want to learn about the intersection of autism and gender dysphoria, and how to adapt their practice when supporting this patient group

  These can be found here: https://eur03.safelinks.protection.outlook.com/?url=http%3A%2F%2Furl6570.hra.nhs.uk%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbbaFUx1g-2FNoQzQT4A7KJcBynofgeRkXDLZ73b7VDAhVohfPpygiC5T0Cb5rNFKR7QbcMC54FPV0Eecflr8QSR8svecNipT3ZTePgvn4OUVHaHl6ev-2Fd64Kypy-2FnrNDP1BVg-2FQwuX3rQU4FU-2BsK5x0gs-3DWD_c_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YKTcCWiKdcvmuHtOXt6dppgmAZviA7o-2FxFkH2w0BPXoLT7B-2F0dG7i7NRPE4QCiOrAQjipocHap8-2FLQyOvA-2By9yKn0B4d6F9bJqlC0jP-2FJYgJGLVue3h6P1csPWgB5f5Fdly67PHeSe0T8fc1-2FNsGFEwpYeODFsGSShuM3nuOi3uag-3D-3D&data=04%7C01%7Capprovals%40hra.nhs.uk%7Cb998a759a3994668111e08d9fb8cf252%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637817405037306956%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=GyI7XtwWUMR%2Fa3CBkaTwaUEUhF8eQ4V%2F5pnyJ%2FAY%2Fjg%3D&reserved=0

• REC name

  North East - York Research Ethics Committee

• REC reference

  19/NE/0265

• Date of REC Opinion

  22 Aug 2019

• REC opinion

  Favourable Opinion