The Consequences of Chasing Acceptance // Emma Fox

A rich and honest account from Emma Fox (The Autisphere), who shares with us her story to diagnosis: how backing off from fighting to exist the “neurotypical” way is one of the most important things we can do as autistic women. It saves lives.

Grit, tenacity, perseverance. These are things I used to wear as a badge of honour. I prided myself on something I called my ‘bouncebackability’. Things always seemed harder for me than my peers. Yet an outsider looking in would see I was always achieving.

Do you know why I always achieved? Because in my mind there was no other option. I had to keep striving, and nothing less than perfection would be good enough.

Anxiety was with me all the time. And I used to tell myself this was a good thing. “It means you care about this” I would tell myself. “It would be worrying if you didn’t feel this way”. And so, this became my normal state of being.

I didn’t realise it at the time, but my primary motivators in life were anxiety and fear. I based my self-worth on other people’s opinions. Their opinions of my success, of my character. But what they saw wasn’t genuine.

You see, to be accepted in the world I learned to mask at an early age. To blend in and appear like other people. I instinctively knew I was different. And when it showed, others made me feel like this wasn’t a good thing. I didn’t know I was autistic. I had no one telling me these differences were OK. So, I overcompensated to prove my worth to others.

Photograph by Serena Wong

No one gives you any credit for this by the way. Do you know how completely draining it is to act in a never-ending play? And this is without any additional life stressors. You may try to explain to others, and they might dismiss you with “well we all feel like that sometimes”. And so, the message is reinforced – just keep going.

Then in my mid-twenties my physical health started to deteriorate. I’d always experienced various physical ailments on and off. But it became constant almost overnight. I had just started a Master’s degree. And as was my usual approach, I wasn’t letting anything get in the way. So, whilst going to endless medical appointments, I just struggled on. My work placement told me I wasn’t entitled to support for a “suspected” disability.

Then after 18 months came the first diagnosis – Fibromyalgia. And coming to terms with this took a huge toll on my mental health. There isn’t really any treatment as such – the advice given is to pace your activities. Well that wasn’t how I’d ever lived my life. And I wasn’t about to start.

I finished my Master’s degree and started work. A chance encounter with some training on autism in women changed my world and led me down the path of pursuing an assessment. The more I read, the more I really saw and understood myself for the first time. I was formally diagnosed as autistic at age 30.

By this point, I was hanging by a thread. The person diagnosing me said something which has always stuck with me. ‘I’m not questioning your Fibromyalgia diagnosis, but have you ever considered it might be the impact of living in a world not designed for autistic people?” I was sceptical at first. Surely, I can’t have become that unwell just from existing?

In the year following my diagnosis I told myself to keep going. I’d figure all this out but, in the meantime, I had to keep up appearances. I really tried. But it was taken out of my hands. My physical health deteriorated quickly. I was way beyond people’s perceptions of ‘exhausted’. And my sensory sensitivities became so heightened that I was even getting motion sickness from the sensation of driving my own car.

I started to become frightened after that. I was losing speech, losing memory, losing basic skills. One night I became unable to feed myself, unable to speak. My husband kept asking me to explain what was happening, but I couldn’t talk. I had retreated inside myself and just needed to be alone. My GP ordered an urgent brain scan. I carried on. After all, my Manager had told me that I was managing to hold it together in the day, so it wasn’t really impacting on work she said.

And then I collapsed.

I’ve not been back to work since that day. I’m unemployed now, and people are often asking me what I’ll be doing next. The truth is, it’s taken me the last year to get back to some form of myself. But I know I won’t be the same. I’ve lost confidence I’ll never regain. But perhaps that’s for the best? Where did it get me?

I now realise I had experienced autistic burnout. Something widely discussed amongst the autistic community, but rarely among specialists that aren’t autistic themselves. My experiences were typical. Raymaker et al (2020) state “Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports.” What I hadn’t realised in my naivety is that eventually, I would break.

Photograph by Priscilla Du Preez

My mind and body shut down, and I lost count of the hours I spent staring at the wall. I needed the nothingness. Surely, after all this time, I had earned that. I fear the Welfare State would not have seen it that way, denying me any financial aid. My husband’s financial support made this work-break possible. I genuinely believe that without this I would have been forced back out into the world of work. I don’t like to dwell on the impact that could have had on my mental health.

Recovery is not as simple as it might seem. I’ve heard it said that if you experience burnout once, it can happen quicker and from less next time around. My old coping mechanisms just don’t work anymore. Instead, I’m learning to listen to my body and my mind, to slow down, and to be kinder to myself. I’m not great at it, but I’m getting better.

“I must learn to exist in a different way. ”

I must learn to exist in a different way. I can no longer use fear and anxiety as my drivers. Those qualities I’d always prided myself on became my downfall. I never even realised I was setting myself up to fail.

Autistic people have shared what helped them to recover from burnout, including social support, reduced expectations, and unmasking. These are helping me over time. But I’m still battling the expectations of others and myself. You see, society doesn’t understand fluctuating conditions. If you did something yesterday, there should be no excuse for not being able to do it today. I felt this acutely as my neighbour remarked “you’re not even trying to find another job, are you?”

One thing I am doing, is trying. I’m trying every day. And this is what I pride myself on now.

The fight to exist as we are is so important. But sometimes, you have to stop fighting. Just for a little while. It might be the most important thing you ever do.

References

Raymaker, D.M. et al. 2020. Having all of your internal resources exhausted beyond measure and being left with no clean-up crew: Defining autistic burnout. Autism in Adulthood. 2(2): p132-143. Available online here.

[Accessed 26/06/2020]

Written by Emma Fox (The Autisphere) for Magical Women