Improving wider public understanding of autism is an uphill struggle. In a survey by the National Autistic Society, just 16% of people with autism and their families believe the public have a clear grasp of what the condition is, despite high awareness of the name alone.
Here in lies the problem. Common behaviours like meltdowns, poor communication skills and anxiety in unfamiliar environments might be assumed as autistic traits for someone who is diagnosed with the condition, but if the public has little knowledge of what autism is, how can these behaviours be distinguished from what might be a serious underlying mental health problem?
Being on the spectrum myself, I’ve faced the challenge of being misunderstood as I grew up. I was educated at a mainstream school, so I was not always open about what the realities of having autism meant to me, seeing as my peers would probably have little knowledge of it themselves. However, the consequences of ‘bottling up’ my emotions, especially when I was targeted by bullies, meant I did not always deal with situations as I should, and would often lead to outbursts of anger or tears.
I shared these experience with a mixed audience of professionals and parents of children who were also on the spectrum at this year’s Cerebra Annual Conference. The event focused on improving mental health support for young people with autism, ADHD and other learning disabilities. As part of Young NCB, I supported a presentation alongside NCB’s Director of Research, Cathy Street, and fellow representative Kiri Joliffe.
I highlighted NCB’s participation work in engaging young people in mental health events, including last year’s ‘Growing-Up Happy’ conference and focus groups with the DfE and IPPR. These events were successful because they included participants from a range of backgrounds, rather than just those with bad experiences in mental health. They also kept the atmosphere relaxed whenever possible, with plenty of breaks and did not demand that we share personal stories if we didn’t want to.
A Q&A with the audience at the end of the Cerebra event, at times, became particularly emotive. It was apparent that many schools are failing to provide the right support for young people moving from education into employment. The damaging impact on mental wellbeing for both parents and children was all too clear.
There are efforts being made to have a better comprehension of the relationship between mental health and autism; there is strong evidence that those who have the condition are more likely than most to encounter problems. At least 40% of young people with the condition will have two or more mental health issues at some point, and might have other learning disabilities too.
Research to improve prevention services and the treatment of those with neurological conditions, was strongly supported by the personal stories shared at the conference. But within the environments which could help children and young people the most, schools and CAMHS services, there are often more signs of weakness than of effective, well-planned interventions. Most would agree with a call for change, but there are still many obstacles to putting that into action.
Jack Welch is a member of Young NCB. To find out about joining visit: http://youngncb.org.uk/opportunities/would-you-like-to-join-ncb’s-young-research-advisors-group!.aspx