With World Autism Acceptance Week running from 28 March to 3 April, and World Autism Awareness Day falling on 2 April, we share the journey of one Fairfield resident, who prefers not to be named, through awareness and acceptance to appreciation of her condition – and hope for the future.
Language is important
‘Neurodiversity’ is a relatively new word. Although it has made its way into public health discourse, it is not a scientific term, or a diagnosis. It is a political concept, and a social movement. The word was coined by Australian sociologist Judy Singer when she put together ‘neurological’ and ‘diversity’ to describe the never-ending variation of human minds and experiences. It describes how all our brains are wired differently, and asserts that those differences should be appreciated and celebrated.
It is a new way of looking at people who experience and engage with the world in ways that do not fit the expectations of mainstream society. We already had many names for the differences experienced by neurodivergent people. They may have been diagnosed with conditions such as dyslexia, dyspraxia, dyscalculia, Tourette’s, autism, attention deficit disorder… But symptom lists for these conditions read like a long list of problems, detailing what is ‘wrong’ and totally missing what is ‘strong’ about a person.
The neurodiversity movement has gained momentum because it turns this approach on its head: it recognises the talents and strengths of neurodivergent people. It has provided a platform for the marginalised to speak up, replaced ‘not good enough’ with just ‘different’, and as a result it is shifting power in public discourse.
Owning my diagnosis
I am neurodivergent. I was given the label of autism as an adult, and although it came as a shock, it was also a eureka moment. Different pieces of my life came together like Tetris. I felt a little less lost, and a little less odd. It gave me a satisfying, alternate explanation for the labels that had been attributed to me as a child: difficult, fussy, sensitive, complainer. I had naturally grown into my skin, but those labels still hung around my neck. Neurodiversity offered me a route to self-compassion.
Looking beyond labels
I have so many strengths. My emotional sensitivity means I feel deeply for others, and that motivates altruism. When I witness or experience injustice, I call it out. I pay attention to details, which helps me to navigate risks. I worry, which means I plan well. Finding stable work has been hard. Jumping through recruitment hoops, especially interviews, has proven challenging. However, harnessing my strengths has led me to a satisfying career in research.
Growing up different
Autism was not well known when I was a kid, and was very rarely diagnosed in girls. One of the reasons for that is that girls are often very good at ‘autism masking’. I copied others in the playground: what kids said, how they played. It was my attempt at fitting in – like everyone, I wanted to be accepted. I appeared ‘normal’, but under the surface there was a lot of confusion and anxiety. I have since learnt that masking is a workaround for the difficulties that I had understanding social situations, interpreting social cues. But this had a toll. I would have major emotional meltdowns and act out at home where I felt comfortable to spill all the energy.
A long, long journey
Regulating emotions still doesn’t come easy to me. I was expelled from school and internalised my frustrations. I juggled mental health problems and addictions – I’ve been in and out of mental health services since my teenage years. No mental health diagnosis fit. Those struggles were, in my estimation, the overarching symptom of undiagnosed autism. It has been a long, long journey to get to where I am today. Unfortunately, getting a formal diagnosis for autism on the NHS can take up to two years – so I chose to do it privately, aged 37.
Being a better-prepared parent
Neurodivergence has a tendency to run in families, and this is true for me and my daughter. Because of my own experiences, I feel I am better prepared to recognise some of the things that bother her. For example, we are often late to school in the mornings because of my time blindness and her sensory differences, which make wearing clothes frustrating. This can heighten anxiety for both of us, but we now have a mantra that ‘we march to the beat of our own drum’, and this helps to manage expectations. Informing the school about my autism has aided their understanding and made them more prepared to make allowances.
As I didn’t have the tools to help myself growing up, I am still on a steep learning curve with my daughter – but when she has those almighty meltdowns, I have empathy. It is a myth that autists lack empathy! I value her big emotions and try not to squash them, even if they drive me round the bend sometimes. I know when we learn to channel them she is going to achieve amazing things. And I still have hope that I will, too.
Learning to love my mind
I have a deep gratitude for neurodiversity advocates. Once upon a time I wished for a brain transplant, but now I am learning to love my mind. I hope other neurodivergent people who are unsatisfied with themselves can find a way to love their minds too. Together we are stronger.