Why I don’t tell people I am Autistic

A lot of sarcasm may be lost on me, or even fill me with confused rage, but irony is not. I can see how ironic this title is. This blog has been brewing for a little while, and two years post diagnosis, I am finally at a point where I want to be openly autistic, to remove the weight from my shoulders of hiding it, to be authentic and to recognise the huge privilege I have, and play out, by concealing it. I have finally come to the space where I realise it just doesn't fucking matter. For a while though,  it nearly sank me. If I love you, but haven't told you yet, it's just not the information I have worked out how to casually drop in to a conversation. Too scared to make other people uncomfortable, or shocked, I want people to have space and time to process this news, without the need to respond.

 When I discovered I was autistic, for the first time in my life I had an answer, a framework, for the many events and experiences I couldn’t explain. The challenges I had that didn’t seem to align with the many opportunities I had been given and what was expected of me. The anxiety, depression, eating disorders, self harm, overuse of drugs and alcohol. The many ways I found to cope with this huge sense of not being right, or enough.

Having recognised I am autistic, and with the support of an experienced counsellor, I decided to pursue an official diagnosis. I was again privileged to be able to pay privately for an Autistic assessor who ensured it was a holistic process. Diagnosis can be fraught, as it is informed by criteria that is built around a disorder, deficits, difficulties. It is essentially based on a few, white, male, non Autistic ‘experts’ observing stressed, white, middle class, Autistic boys and deciding their behaviour is the definition of the Autistic experience. As it is not actually based on the ‘voices’ of autistic people , it is harmful at best, and deadly at worst. It can take years on the NHS waiting list to get an assessment and even then you are not guaranteed to be assessed by a 'professional' who knows their shit. BIPOC, LGBT+ and female Autistics are hugely under diagnosed, or gas lit, because they do not fit the outdated and narrow criteria created by non Autistic people’s observations. BPD, OCD, depression and anxiety are common misdiagnoses for Autistic people. And because of masking, an exhausting survival strategy Autistic people learn, to hide their authentic selves, and behaviour, from society, to avoid being marginalised, arrested, excluded, bullied, labelled and so on. So many Autistic people may never know they are.

As a white, cis-gender, heterosexual, masking Autistic woman, to go undetected, kind of, is huge privilege. To some I may seem rude, weird,  untalkative or not fit in with social norms or expectations (I question shit a lot and can not read between the lines). I am actually just Autistic, maybe overloaded sensorily  or exhausted from masking or just protecting my energy to see me through. A day on a busy beach with family and friends, although the most joyful experience, will leave me heavy with exhaustion. My senses take it all in, which is wonderful, I can pick up on the slightest detail, predict hazards and patterns with ease, pick up sounds from distance, notice subtle changes. It can feel immensely beautiful and euphoric to see, hear and feel the world in such glorious detail. But, all this information can become overwhelming and lead to consuming fatigue.

I have come to the conclusion that the privilege I have of being able to disguise is a disservice to the Autistic community, particularly those who do not mask and face the most challenges and barriers to inclusion, well being and health. I have been able to access education, employment, healthcare and other systems without too much trouble. I can hide my struggles connected to being Autistic. I can play innocent when someone casually drops a joke about ‘the spectrum’, or their pet’s funny ‘autistic behaviour’, or how someone must be autistic because of their strange demeanour. I am now considering, by being open, that I can potentially bring more awareness to the autistic experience, challenge harmful stereotypes and just live without shame.

There are so many more reasons I had decided, in the past, not to disclose I am autistic. It isn't just not knowing how friends and family might respond. A big one for me is my work. I just assumed clients won't want to work with me when they discover I am autistic. The clients I have told have been so beautifully accepting and positive, they have made this process so much easier and less terrifying. As have the friends I have confided in, for all of whom I am so grateful. I haven't told my GP. During the height of Covid, when hospitals were overwhelmed, patients in intensive care were being given ‘Do Not Resuscitate’ Orders if they were autistic. Eugenics are rife in the autistic world. Some organisations still want to cure it, or prevent it.  My children's class teachers don't know I am autistic (thus far) as I fear my children will be judged, or my parenting might be. I fear disclosing I am autistic will impact how I am perceived in so many ways. Then I think what it must be like to be an autistic black person who encounters the police, or the healthcare system. So much worse. Such higher risk of harm. A young black autistic man in the USA, Matthew Rushin, was imprisoned, and faced a lengthy sentence, after the police mistook his autistic meltdown, following a car crash, as violence. Thankfully he has now been freed after hefty campaigning.  It is time for me to step up and stop ignoring how comparatively easy it has been for me.

Getting a diagnosis has healed much of my past. Navigating school was fucking hard, I was a misfit at a single sex school and bullied accordingly. Thankfully I met the most wonderful crew, at 16 years of age, and our shared love of drum and bass and jungle and raving, and all that came with it, created the most wonderful times. There were many points that I struggled to navigate the more complex aspects of social rules and communicating, but this crew held it down for me. Still do.

For the sake of creating fitness related content, I wanted to outline why being autistic has made me a good Personal Trainer. Of course being autistic is not a prerequisite to being a good PT, or any role. But, it has taken me all this time to come to terms with the fact that being autistic offers me strengths and isn’t something I have to hide, for fear of being rejected. Like anyone, I know I am not for everyone, and that is fine. My job is my ‘special interest’. This is something that an autistic person returns to for immense enjoyment, security, comfort and regulation. You get me started on movement, the pelvic floor, hormones, anything that informs my work and I am genuinely delighted. It is such a joy to spend time supporting people and to be able to pass on the knowledge I have. It is pure pleasure learning, and researching, my role. Being absorbed in learning about it can make hours pass like minutes. No stone goes unturned. Blanket fitness statements, bullshit trends and generic approaches are not for me. I question everything. If someone declares a new fact, or imparts some knowledge I have not come across, I can not wait to read all the research, find the evidence, learn the details. Because of this, my work is founded on knowing there is no one size fits all and making sure I know my stuff. I do not shy away from admitting I don’t know, and I love then taking time to find out. When I watch a client move, I can feel it in my body. It is hard to explain, and I am aware, quite weird. I think it is a form of synaesthesia. I am so hyperfocused on my clients, I can pick up on the slightest movement change, breath adjustment, facial expression or sound. It is so much fun to work with clients to explore movement strategies that work for them as an individual. This reinforces my experience, and strong belief, that you just can not assume to know what is right for each person until you work together to find out. Experimenting, playfulness and trouble shooting. Being prepared to get it wrong and try a new approach. Just because an idea worked for one, two, or more clients, can no way guarantee it is the right fit for another. I am a stickler for technique however. It is beautiful to watch someone learn a new technique and practice it until it becomes innate. Some clients may be able to attest to my happy dance when this happens.

I am also passionate about social activism and getting political. I work with bodies, people. That is political. You can not work with people and avoid topics like Ableism, White Supremacy, Patriarchy, Capitalism. We are all conditioned by it, or at least impacted by it. Mainstream fitness and diet culture is born of it and as a result can be very exclusive and sideline people. But that is for another blog. Maybe because for so long I often felt on the periphery, I am passionate about being an inclusive personal trainer. This relies on continuously learning, and unlearning, about systems of oppression. This is as important for my professional development as the more hands on learning.

Like anyone, there are situations that challenge me and can sit in my nervous system, for example last minute change, struggling to read between the lines, lazy statements about autism and busy childrens’ parties. But I am old enough, experienced enough, and have done the work, using self coaching techniques, thought work, breath work, counselling and menstrual cycle awareness, to be able to put strategies in place to deal with them, so that I can access day to day society. I am lucky.

So, there you go. This isn’t easy, but comes at a time professionally, and personally, where I need to just be me, all of me. To risk some rejection and judgment, but know from here I live authentically and can put my energy, not in to hiding, but in to far more important things, the bigger picture. My loved ones, my work, Social Activism, Reparations, the Environment. Because at the end of the day, me being autistic just doesn’t fucking matter.