This week is Autism Acceptance Week, and I’m getting in there at (almost) the last minute to share what this means to me!
Autism is something I’ve had an awareness of for a long time, but it was only last year that I finally was able to access a diagnosis for myself.
Letting others know about my diagnosis has – and continues to be – an interesting process, and understandably not everyone knows how to react. Perhaps in the hope of helping people feel more comfortable with talking about autism, today I want to share what autism means to me and a little about how it can impact my life.
First of all, I was over the moon to get my autism diagnosis! For me, it felt like the final word on so many worries and questions I’d had spinning round my head for over a decade. And while an official diagnosis is not the be-all and end-all when it comes to working out how to navigate the world safely, I felt so relieved that so many of my experiences were starting to make (some) sense.
In fact, getting the news was such a happy event that my partner even got me a cake. I don’t think I ever thought the word “congrautulations” would make me laugh so hard, but it truly did, and I appreciate the cake shop going along with the “misspelling”!
Experiences of autism are very different from person to person, but here is a little of what it’s like for me:
- There are lots of materials that I can’t bear to touch, especially synthetic materials in clothes
- My sensitivity to sound and light can fluctuate massively, meaning I’m constantly adjusting my computer/phone volume and brightness
- My thinking tends to be very rule based
- I find it hard to identify my own emotions (this is known as alexithymia)
- While I really enjoy being social, a lot of interactions leave me with a social “hangover” due to the effort of masking*
*Masking is a survival strategy common among autistic people (especially those socialised as girls) whereby you mimic neurotypical (“normal”) behaviours such as natural eye contact, active/"appropriate" facial expressions and varied tone when speaking, while also suppressing things like stimming behaviours. Put simply, it’s a way of trying to fit in. As it’s built up over a lifetime of practice, you unfortunately can’t just stop masking overnight - and indeed, not everyone wants to.
As you may imagine, each item in the above list tends to come with both plusses and drawbacks. For example, rule-based thinking has helped me a lot with getting my head round things like grammar rules (though not maths, sadly!), and being a pro at masking can make adapting to a brand-new culture and linguistic environment like Japan feel like almost second nature. I also think my structured approach to information is helpful when it comes to teaching. However, all of this comes at a heavy cost in terms of energy, meaning that if I’m not careful, I can get overwhelmed and burnout quite easily.
While I’m at a point where I feel relatively able to manage my autism and mental health in balance with my work and other parts of my life, these things fluctuate, and in many ways I’m still only just starting to learn strategies to really take care of myself. This is one of the frustrations I experienced early on: having people around me who were keen to be supportive, but not knowing myself what support I needed.
Over the past few years, something that has been quite alarming for me to learn about is the barriers many autistic people face in simply getting a diagnosis. For a start, autism has historically been seen as only occurring in white boys. If you feel like you’ve been seeing more and more women or people assigned female at birth coming forward with autism diagnoses in recent years, it’s because many of us were simply seen as a bit “quirky” or “shy” as kids, and have only recently been recognised as autistic - both by ourselves and others. Likewise, people of colour can face similar barriers to being recognised as autistic, with signs of autism being dismissed as a person just being "disagreeable" or "rude" - something I first learnt about thanks to this article.
Even beyond these issues, there are further hurdles when it comes simply seeking an assessment, as even in the UK, where an assessment is in principle free, waiting lists can be years long. For example, step out of the central belt of Scotland and as an adult, you’re typically facing five years until your first assessment appointment – not to mention that to even be referred, you have to already be in contact with NHS mental health services. This means that often only those who can afford the private route can actually seek assessment.
While ideally I’d like to end this post by sharing some handy resources to learn more about autism, I’ve decided that after a hard week, I’m going to defer to the power of the internet. My one piece of advice would be to steer clear of organisations who are looking to “cure” autism, and instead focus on information either from autistic people ourselves or from organisations who focus on understanding and supporting rather than “fixing” autistic people. After all, we’re not broken!
Thank you for reading,
Elly
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