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Moving Beyond Shame and Invalidation as an Autistic Person

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Five years ago this month, at least seven years’ worth of progress went out the window pretty much overnight.

In order to tell this story in the way that it needs to be told, I can’t say what happened five years ago – not yet. The preceding eight years need to be told first.

The preceding eight years span most of my secondary school days and almost all of my university days. The specter of my autism (Asperger’s) diagnosis loomed large over many of these days, for many reasons. I was diagnosed at the age of 2, shortly before Andrew Wakefield made headlines with his fraudulent “MMR vaccine causes autism” claims, and my card was marked – as per my primary and secondary schools’ legal and moral obligations.

I have no doubt that they approached me with the best intentions, but none of my peers’ cards were marked in the same way as mine, and there’s no two ways about it – that hurt. Not academically, but socially. It has not been fun to grow up knowing that my neurological makeup, in the eyes of society, was once considered so awful that it would be worth leaving children at risk of contracting potentially lethal diseases such as measles in order to “avoid” letting them become like me.

In 2010, Wakefield’s research was finally struck off the record, and that weight fell away. Around that time, I was beginning to rebel against the notion that I had created (or been subliminally told) that there were certain things that I could not accomplish – singing with my friends, dancing at school proms, making a positive name for myself, running for student leadership positions. This was all very good – the tides were turning.

They continued to turn during my A-Level years and university days, albeit not always linearly. I became known among my friends and peers as a keen quizzer. Everyone came to know that I love penguins and that my favorite musician is Taylor Swift. My friends and peers have told me that they love my forensic eye for detail in my academic work and extra-curricular clubs. In all of this, many of the alleged negatives of my autism were being incredibly positive. I went to work at an American summer camp, I became a lifeguard in the U.K., and I decided my career path in response to these experiences.

Then in 2016, with 100 days to go until the official end of my degree, I started a social media countdown, sharing a life experience or a special song every day. I did this partially to build up to the grand moment in style, partially to celebrate my life’s highlights so far, and partially to tune out the ill-effects of my cruel and manipulative lab group that year (who brought all my worst fears of “impostor syndrome” flooding back). On Day 21 – 21 being an unlucky number for me – I wrote about how I had come to work my autism into all my best characteristics and memories, thus finally turning the tide on my story of “autism is a huge impedance and a huge source of shame in my life.”

But then I got a direct message later on Day 21, and the tides were reversed.

The gist of this message was that I needed to delete my Day 21 post in order to avoid putting my future employment prospects at risk. This was despite the fact that my social media privacy settings were (and still are) on the highest possible setting, thus minimizing any chance of my posts spinning out of my control in that way, and that the whole point of my Day 21 post was to celebrate how I had worked around the negatives of autism and turned them into positives – including with regard to universal workplace skills.

The point of this message was that I had to account for the possibility of unconscious bias by employers during the vetting and hiring process. (Conscious bias, on the other hand, would almost certainly be unlawful, but that’s another story.) This is despite the fact that any job application form that I was to fill in would come with the expectation that I would declare my autism on the appropriate page. The message made no mention of this.

The net result was that the specter of my autism diagnosis returned with a vengeance. An intrinsic part of me was once again being painted not as something to be worked with or celebrated, but something to be minimized and hidden away. To put it another way, I was being “reminded” that I was right all along – my diagnosis and its implications were shameful. With this “reminder,” and the simultaneous ongoing specter of my arduous university lab work, all the steps that I had taken towards self-acceptance were demolished.

Today, I am once again rejecting that sense of shame.

As long as my autism is not harming anyone – and I always aim to do everything I can to make sure that it does not – I should not be required to present a false face to the world.

I am analytical and empathetic. Both of these are essential in and out of my work. Being autistic has never stopped me from being either of these.

I have recently delivered several short seminars about the recent history of anti-vaccine conspiracy theories, framing them in such a way that I call out and dismiss the inherent implication that avoiding vaccination to avoid autism is (a) an invalid link and (b) a grossly stigmatizing dog whistle. I am grateful to my audiences for their reflective responses to these seminars.

Three months after the Day 21 incident, I was sitting on a plane flying back to the USA for the first time in two years. I chose “Frozen” to be my in-flight film. Conceal, don’t feel, don’t let them know. It was exactly the film I needed to watch that day. I saw so much of myself in Elsa’s story arc that “Frozen” remains one of my favorite films. As I was flying back to my favorite place in the world to reunite with my favorite people in the world – my summer camp and my colleagues who worked there – I felt that much better about everything. I was on my way to reunite with the Annas to my Elsa, and we all need an Anna in our lives.

You could say the cold is bothering me less every day, anyway — finally.

Getty image by JNemchinova.

Originally published: April 6, 2021
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