Case study: Richard Lelliott: Being diagnosed with autism
Over 870,000 people took part in research in 2018/19. This research helps improve health and social care provided by the NHS and others. It also helps advance medicine to find new cures and better treatments for future generations.
Berkshire dad Richard Lelliott took part in NHS research after he was diagnosed with autism during a four-month stay at the inpatients unit at Reading’s Prospect Park Hospital.
The father-of-one, who was diagnosed with psychosis for more than 30 years, volunteered for studies into the experiences of people with autism and mental illness. "I ended up being taken into hospital because I’d had a nervous breakdown and I needed help," he said.
I’ve been through many years of misdiagnosis and I think it’s quite good to be involved in research for that reason. There wasn’t the same understanding of mental health at the time
Autism is a lifelong condition that affects how people interact with others. Most people with the condition see, hear and experience the world differently to those without it.
Mr Lelliott said: “When making plans with people without autism, they’re very vague: we’ll do this and that. To an autistic person, we’re finite, we’ve got one chain of thought and that’s it. Being out gives you a lot of sensory overload, you end up going out and doing what you need to do before going back home and withdrawing yourself, like you’re living in a trench.
“When I’m anxious, or get upset about other problems like the car breaking down or the house being a mess, I get into a lot of stress and it turns into this voice which disrails me, telling me I’m evil or bad.”
Mr Lelliott also has complex post-traumatic stress disorder (PTSD), an anxiety disorder caused by repeatedly experiencing stressful, frightening or distressing events.
Hearing voices is part of my trauma, which I have come to understand. For many years it was thought it was exclusively something else, so it is important to be involved with trials, as everybody hearing voices can be different.
Mr Lelliott took part in three NIHR-supported questionnaire studies during a visit from a researcher at Berkshire Healthcare NHS Foundation Trust.
The first is looking at the experiences of adults with autism such as their diagnosis, physical and mental health, social support and lifestyle choices to improve services. The other two studies are looking into mental illness. The second is about how people who hear voices respond to them and how they interact with other people. The third study is looking at why people with mental health and neurological disorders experience memory problems.