More and more is being done to raise awareness of mental health problems at a public and policy level, and understandably so. One in six adults in the UK has a common mental health condition, and one in 20 adults has thought of taking their own life at some point.
Young people are thought to be a particularly vulnerable group, as most mental health conditions develop between childhood and adulthood and may even be at their peak between the ages of 16 and 20. Worryingly, young people are often reluctant to seek help for their mental health problems, citing stigmatising attitudes towards mental illness, concerns about confidentiality and trust, and trouble identifying the signs and symptoms of mental health problems.
Autism is not a mental health condition itself, but around 70-80% of children and adults on the autism spectrum have experienced mental health problems. Of particular concern, suicide rates among autistic people are nine times higher than those found in the general population, with 66% of recently diagnosed autistic adults reporting that they have contemplated suicide. This isn’t an issue that has gone unnoticed, with autistic people, their families and the people who work with them highlighting mental health as the priority area for research. But what about young autistic people – are they a particularly vulnerable group?
Working with a team of young autistic people from the charity Ambitious about Autism, we (at the Centre for Research in Autism and Education) asked 130 young autistic people, between the ages of 16 and 25, about their mental health needs and their experiences of seeking mental health support. The results showed that 80% of the young people in our sample had experienced mental health problems.
As well as suffering from mental health problems, these young people told us how they lacked confidence and generally felt unhappy, depressed, worthless, under strain and unable to overcome their difficulties. Many young people felt that these problems stemmed from the pressure to act “normal” in a “neurotypical” world (the world of non-autistic people). As one young person told us: “If somebody who wasn’t autistic grew up being excluded, bullied, and pressured to be something that they are not, they would very likely develop the same conditions.”
Difficult to get help
Even if the young people did recognise that they needed mental health support, 62% of them told us that they had little, if any, confidence in knowing how to access support. And 68% said they lacked confidence in getting appropriate support for their mental health needs. More worryingly, the young autistic people who had accessed mental health support told us how they faced major problems in getting the help they needed. They experienced high levels of stigma – about autism and mental health – and felt that services failed to meet their needs in several ways.
For example, the young people explained how there was a lack of services, with lengthy delays to access the services that were available. They also felt that transitions from one service to another were poor. Even more concerning, they reported that services were not tailored to the needs of young autistic people, telling us how staff often did not have knowledge of autism or how to adapt services to best support them. As another young person told us: “I know that there’s no support there, should I need it, and that scares me.”
Mental health services in the UK have their failings across the board, but they appear to be particularly lacking when it comes to autism. Young autistic people are especially vulnerable as they move from childhood to adulthood, and services effectively disappear.
More services are clearly needed. But we also need to do more to understand the most effective mental health support for these young people. Our research showed that the young people felt most satisfied with their services when professionals took the time to get to know them and their specific needs. Only by listening to and learning from young autistic people – and valuing their “experiential expertise” – can we truly hope to meet the needs of this vulnerable group.
Laura Crane receives funding from the British Academy.
Liz Pellicano receives funding from the European Commission, the Medical Research Council, the Economic and Social Research Council, the Leverhulme Trust, The Clothworkers’ Foundation, Pears Foundation, Autistica and various autism charities.