Mental health issues are one of the major struggles of our young generation. For autistic people, like me, the scale of the problem is no less. Seventy percent of autistic people experience a mental health issue at some stage in their lives. The pressures of living in a world that is not designed to suit our needs means that access to specialised services is essential to ensure we are supported in a timely way with our mental health.

Sadly, the reality is that access to specialised services or community based wellbeing services are still a work in progress. There is more to do if they are ever to provide improved outcomes for young people who need support.

At Ambitious about Autism (AaA), a national charity for children and young people with autism, young volunteers take part in the myVoice participation project group. They chose mental health as the priority topic for our recent campaign, “Know your Normal.” I was intrigued to find out more about the problems that others face, not least because of my own experiences of mental health within mainstream school. This motivated me to contribute to the research project. I wanted to contribute to  the evidence base, so that mine and others’ experiences could help to challenge the stigma around autism and develop solutions so that others have better experiences.

A sub-group of the research team worked in partnership with the Centre for Research in Autism Education (CRAE), on our “Know Your Normal” campaign, which gathered stories and data from autistic people aged 16-25 across England. Importantly, the research was developed by researchers and autistic people, which ensured that its findings were informed by people with first-hand experience of living with autism, while maintaining the quality and rigour that would be expected of a research project. What the research showed was not quite as shocking as we predicted.

The research found that only 14% of respondents felt “very” or “extremely” comfortable about disclosing a mental health problem within a clinical or healthcare environment. Many autistic people overwhelmingly prefer getting support from friends and family, finding this more useful for them. When it came to confidence overall though, 62% responded either “a little” or “not at all” for knowing who to contact when a mental health problem was affecting them. Although there can be no disputing the benefits of a close support network, the research has exposed a need for a culture change in the healthcare system. One participant summed this up well, saying:

“If I’m having a really good few weeks or months, then I’ll think actually, no, there is a clear difference between the two [autism and mental health problems] because the autism doesn’t have to make me ill, but the depression does”.

Frequently, the lack of prompt access to healthcare services or community-based support and poor handling of transitions from child to adult provision experienced by young people left them with a strong feeling of dissatisfaction and a sense that the system did not meet their needs. More than anything else, it is the responsibility of services to have training available for staff to ensure that they can fully understand the specific concerns of their patients in relation to autism. Some NHS services have now agreed to receive training delivered by AaA. The Royal College of GPs have additionally featured the specially produced toolkit as part of their resource register.

It is vital to understand that while autistic people maybe more likely to experience mental health conditions, these should not be labelled together. For example, you can “treat” depression or anxiety but there is no cure for autism.

Although the “Know Your Normal” report goes some way towards shedding a new light on a specific group of young people in society, we cannot forget the needs of those without the capacity to verbally communicate or adults over 25, which could not be addressed in this campaign and whose own mental health experiences are still often overlooked.

One of the core objectives of the campaign, as suggested by its title, was the acceptance that everybody’s idea of “normal” is different in one way or another. Even though autism comes with its own challenges, the right interventions and support could allow many of us with the condition to flourish as adults. Something needs to change, and the partnership and collaboration with autistic people is central to raising awareness, campaigning for more effective support and creating that change.

Jack Welch is an autistic advocate and campaigner who has been involved in various voluntary sector and healthcare based networks for a number of years, including NHS England, Mencap and Ambitious about Autism.

Competing interests: JW is employed by Rethink mental illness (Employer). He is on the advisory board for NHS England — Learning Disability and Autism which is a paid position. He is on the advisory board for the Council for Disabled Children which is a paid position. He is a volunteer/advocate with Ambitious about Autism and a governor for NHS Dorset Healthcare.