Questioning the diagnosis of autism denies the difficulties people like me live with | Anthony Castle
There is a man alongside me. He is well put-together, hand outstretched, deep voice. I stand in a room filled with competent people who look the part. I am there in my role, to get a story, but I have not been sleeping or eating. I feel as if I can’t breathe. The man is questioning me: Who are you? What do you do? I can’t answer.
I am covering a fundraising event as a journalist. I know why the man is questioning me – I have lost my name tag – but in this moment I am not able to answer. It has been one week since I was diagnosed with autism.
Autism diagnoses have been a topic of debate lately, with talk of an “autism epidemic” in Australia. Researchers have claimed Australia’s autism rates are among the highest in the world, with one review suggesting the NDIS is providing a financial incentive for diagnosis. While there have never been more people identifying as autistic, there is public critique of diagnoses. How can we say who we are when it is questioned?
We form according to our difference, flowing in our own ways like rivers or growing like the arms of trees
I have experienced difficulties with people, with places, with my own body, across my life. After eight years of therapy, an autism assessment was suggested. I questioned the idea.
As a child I was drawn to imagery and ideas, able to make sense of them internally, to take my experiences and make them into stories. In adulthood, I learned to imitate eye contact, how to shake hands, how to speak. I learned to look the part. I built an identity from the constructs of gender, straightness and class, a persona one friend jokingly called “the competent man”.
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Later-in-life diagnosed autistic adults often evade childhood diagnosis by suppressing their differences and imitating others, a behaviour known as masking. Prolonged masking can cause autistic burnout, occasionally even self-harm.
I noticed the stories in the media while awaiting my assessment, that the rates are too high, that parents are diagnosis shopping. Some have questioned whether it’s young people seeking approval, psychiatrists arguing it can be a social contagion on social media. Isn’t it just anxiety? Do you need a label? I have heard these questions before. I asked them of myself.
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The reality is that autism rates in Australia have increased over the last decade, from 1 in 150 in 2015, to 1 in 70 in 2018. Peer-reviewed research estimates that one in 31 children are now diagnosed. This is comparable to other countries, the trends predating the nationwide rollout of the NDIS, and reflects the broader understanding of the autism spectrum established in 2013.
Diagnosis is inaccessible and expensive, often coming after significant difficulty. Autistic adults are more likely to have chronic illness and mental health conditions, less likely to be employed. Suicide is one of the leading causes of premature death in people with autism. Questioning diagnosis denies the data and the difficulties that autistic people live with.
After my diagnosis, I lost a part-time job. I lost 12 kilos. I spent an entire therapy session barely able to breathe. I had panic attacks. A doctor asked if I was having suicidal thoughts. Sometimes I do.
I don’t doubt that some parents are desperate for answers, or that teenagers experiment with labels. I don’t doubt the funding challenges, but who would want these difficulties? I can’t deny mine any more.
I walked from that event and found myself at a nearby river, beneath the trees, in the dappled light of the morning. I took a breath. I imagined a competent man alongside me, well put-together, a man I built. I lived as this man and I loved it, but now that is over. He died, lost, like a name tag. If I don’t accept that, it could kill the only self I have left.
Identity is a construct, but people aren’t built. We form according to our difference, flowing in our own ways like rivers or growing like the arms of trees. Autism doesn’t explain everything about me, but it makes sense of my experiences. I am now accepting my differences. The competent man is dead, but the autistic person is able to breathe. It feels like the morning.
The questions around diagnosis rates and discussions about whether funding to support autistic children should be cut may continue. Regardless of the debate, autistic people are saying who we are. Decision-makers should listen, and help make our experiences the story instead.
Anthony Castle is a writer living on Kaurna land, Adelaide
In Australia, the crisis support service Lifeline is 13 11 14. In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is at 988 or chat for support. You can also text HOME to 741741 to connect with a crisis text line counselor. Other international helplines can be found at befrienders.org