Mental Illness, Neurodivergence and Distress Study: Understanding the experiences of mental health problems in autistic adults, adults with ADHD, or both (AuDHD)

PI Title: Hannah Bowers

Lead member: Southampton

Background: Autistic people often have ADHD, and vice-versa. It is common for autistic/ADHD people to experience mental health challenges, like depression and emotional distress. Mental health problems are more common in people who are diagnosed autistic/ADHD later and people who ‘mask’ or hide their traits.
In primary care, doctors are responsible for recognising and helping people with these challenges. Some signs of depression or distress can look a lot like features of ADHD or autism (like trouble concentrating, low motivation, and feeling restless).
Being autistic, ADHD, or both (sometimes called ‘AuDHD’) can also cause people to feel distressed. This overlap can make it difficult for doctors to know when someone has a mental health issue that needs treatment, or if the difficulties are due to ADHD or autism.

Aim: To understand experiences of mental health problems and their treatment in primary care from the point of view of autistic/ADHD/AuDHD adults.

Methods: We aim to speak to 25 autistic/ADHD/AuDHD adults about their mental health and their experiences of getting help in primary care. We will invite people to do an interview with a researcher. We will include people who identify as autistic/ADHD/AuDHD without a formal diagnosis because getting a diagnosis can be really difficult.
We will share invitations on social media, through charities, and from GP practices. Interviews will be done online, by phone, or face-to-face. All information about the study will be designed with autistic/ADHD/AuDHD adults to make sure it suits their needs and preferences. The interviews will be done in a way that suits autistic/ADHD/AuDHD adults (e.g. giving extra time to
answer questions or sharing the questions before the interview). We will read the interviews in detail and note the common ‘themes’ or ideas across all the interviews with help from our contributors with lived experience.

Patient and Public Involvement: We will have a group of 2-4 people with lived experience who will meet every few months to help make decisions about the research. We will work together to make sure the information about the study and the methods are inclusive, accessible and suit autistic/ADHD/AuDHD adults. We will also work with lived experience contributors to describe and share the research findings.

Sharing our findings: We hope this research will provide information that will make it easier for doctors to understand what is a mental health condition, compared to what is distress and what is autism/ADHD/AuDHD. This will help doctors decide how to support people better. We will share our findings with doctors and researchers through scientific papers and conferences. We will share our findings with the community by working with charities who can share information on their websites, social media and if possible at their events.