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I thought I was having a midlife crisis; albeit one that started a bit early, and was lasting a long time. I had a great job, a beautiful house, a loving family, a dog, and a cat. But I was also constantly overwhelmed and exhausted, so for a long time I convinced myself I was just tired. Then I started to feel an overpowering sense of anxiety, so maybe I was worried about getting older? Then a growing conviction that I didn’t know who I was or what I wanted or what made me happy.
So how did I get to this point? I had always felt like I didn’t quite fit into the world. From the time I was a small child I thought I was just a fundamentally inadequate human being. The way that I thought, the way that I spoke, the way that I moved, the very way that I existed just wasn’t quite right.
As I progressed through adolescence and into adulthood I became extremely proficient at hiding all the things that made me different from other people. I learnt how to speak like them, move like them, act and react like them. I built a successful life but I was constantly, permanently anxious and exhausted.
“Surely everyone finds the lights in the office so bright that they have a headache by lunchtime.”
I thought that everyone experienced the world the same way I did. Surely everyone finds the lights in the office so bright that they have a headache by lunchtime; everyone struggles to separate the voice of the person they are talking to from all the other sounds in the environment; everyone finds social rules confusing and has to learn the scripts for each interaction. I thought the difference between me and all those other people was that they just managed it all better than I did – and I just had to try harder.
When I became a mum and had two perfect children, who happened to be autistic, it slowly began to dawn on me that maybe my differences weren’t just character flaws. There were so many things about my sons that teachers and ‘experts’ saw as problems to be addressed, that I saw as normal ways of thinking, acting and being in the world.
For a long time, I didn’t think I needed a formal diagnosis because I was at a stage in my life where I assumed it wouldn’t make much difference. My main reason for seeking a diagnosis was that I felt it would enable me to be a more effective autism advocate. I was anxious about the diagnostic process. I wasn’t worried that I would be diagnosed autistic as I had self-identified that way for some time and was comfortable with it: I was worried that I would be diagnosed non-autistic. What if autism wasn’t the explanation for my difference and challenges, and I was just a flawed neurotypical?
“It was an absolute life-changer.”
I was not prepared for the emotional effect the diagnosis would have on me. It was an absolute life-changer, and the beginning of a journey into being comfortable with myself as a human being. Here was official confirmation that the challenges and problems I experienced weren’t a matter of not trying hard enough or not being good enough.
My autism diagnosis gave me the courage to stand up and advocate both for myself as an individual and more broadly for autistic people around me; and slowly, progressively, that gave me the confidence to begin taking my mask off. This was a gradual process, tiny steps at a time, each one anxiously anticipating how people may react.
Little changes have made a huge difference to my energy and confidence levels: like being able to tell people that I need to have my camera off in zoom meetings in order to be able to process what they are saying, or wearing my sunglasses when I meet with friend in the far-too-bright coffee shop. I would love to say that I bravely take my mask off at all times in all situations, but I’m not quite there yet.
Sandra Thom-Jones is the author of Growing in to Autism (MUP, 2022), Autistics in Academia (Cambridge, 2025), and Autistics at Work (MUP, September 2025). She works as a consultant, providing support and advocacy services for autistic people, and professional development and consultancy for education and healthcare providers.