Autistica recently launched Discover, the UK’s national autism research network. What does all this mean to someone like me, an actually autistic person? It means HOPE.
My curiosity has always been a key part of my life. As a young child I wanted to know how things worked; what I was looking up at in the night sky; what the fossils I was finding on the local beach were, as I held them in my hand.
All this was little compensation for the bullying I was getting at school because I was obviously different. Unfortunately ‘what you learn at school stays with you’. I still have mental health issues from this time, that I struggle with on a day to day basis. What’s worse, bullying about being different does not stop when you leave school.
Of course I'm curious about why I'm autistic but I'm more curious about how I can be enabled to exist within a society that mostly does not accept my differences. A society that often doesn’t recognise neurodivergence as an innate way of being. I and many others still feel rejected; this needs to change.
Maybe we can start with the language. Language engenders attitudes. I'm only broken by others' misplaced attitudes. I don't have autism, I'm autistic. I don't live with or fight autism, I live with my wife and two cats but I do live and fight with PTSD (Post Traumatic Stress Disorder). I don't suffer from autism but I do from people's lack of understanding. I know the sting of off-hand comments and words that hurt; of stereotypes and autism myth that drives how we are portrayed in the media, where our voice is often replaced by assumption. Authentic understanding should come from research not the TV.
I just want to be a fulfilled member of society.
I just want to be engaged.
I just wish to be useful.
I just wish to belong.
Then I felt the joy of being included by Autistica in shaping the top ten priorities for research last year. Having my voice heard within their suicide summit this year meant the world to me. My story; the artwork I make; the commonality I feel with other autistic people; working to improve other autistic people's quality of life – it all brings a value to my life. It’s all helped me to stay.
I'm especially proud to be part of Mental Health Autism’s work; to be listened to and not feel the stigma or shame of admitting to my mental health issues. That work means the desert of current mental health services may start to recognise they need to accept not reject us, to understand our different needs. One size does not fit all. Where I have previously been made to feel like I don’t fit, this work, this hope is helping people like me to stay. Be careful I'm showing empathy here!
“This is why I'm enthusiastic about Discover, the most exciting step forward in autism research for years”
Autism research – informed by actually autistic people – is the only way to achieve progress in improving the lives of autistic people; alongside its findings being respected and implemented into society. Let's have research that understands the imperative of improving our lives, not how best to prevent them. It's not about adversity, it's about diversity. It's about a growing mutual trust and making research relevant to all of us. Autistica’s involvement of the autistic voice and our lived experience is a vital step towards this change. This is why I'm enthusiastic about Discover, the most exciting step forward in autism research for years.
Talk with us, not about us. If you wanted to know what climbing the Himalayas felt like you'd ask some one who's actually been there, not just read about it in a book. Ask us for authenticity. Ask us what it's like to grow older in a society that doesn't understand us, the fears we have, the limited options we can or may need to take. Ask us about our experiences of growing up as children, our experiences of school, what worked and what didn't. These things may revolutionise the lived experiences of the next generations of autistic children, who shouldn't have to go through the crap that we have. This is why I encourage autistic people and families to participate in research studies. Researchers should read and follow the shaping autism research recommendations but we as autistic people need to join in for our voice to be heard.
“The next generations of autistic children shouldn't have to go through the crap that we have”
Because we need partnerships, we need allies. We don't need more awareness; most people have heard the word ‘autism’ but what are they aware off? Traditionally they hear about a list of maybes, misunderstandings and myths. We need to raise understanding.
I hope Discover becomes this catalyst; a social chain reaction for change in our quality of life because if it benefits actually autistic people, it enriches the whole world. I'm an autistic person. I'm also still human. All of us needs to feel included. All of us need to feel hope.