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Autistic enough: The story of a multiply neurodivergent OT

I’m Clare Keogh, a mid-twenties Autistic woman who also has Dandy–Walker Syndrome and Agenesis of the Corpus Callosum (rare congenital brain formation disabilities). I live in Melbourne, Australia, and I’m a paediatric occupational therapist.

I really enjoy my job. Currently, I work at a school for Autistic children. I’m a year and a half in, and I’ve learnt so much. One of the things I enjoy most about my job is how I can combine my lived experiences with my professional learning to support the students. I see myself (little me) in some of them – but more than that, I see their vibrant personalities, triumphs and challenges, and individual needs. I want to help these kids to be the best “self” they can be, so that when they leave the school, they have a good foundation for the future.

I’m sure that the other staff share similar views, but for me it’s particularly personal. I wasn’t officially diagnosed as Autistic until last year, after having self-diagnosed for a year to eighteen months before that. I suspect that my Autistic aspects were masked by my congenital disabilities, including well-meaning health professionals not wanting to “label” me further. After all, I was intelligent, independent and didn’t necessarily exhibit many stereotypically Autistic behaviours.

What wasn’t seen was how the ways I struggled with emotional regulation and social situations, despite my outgoing nature, were Autistic struggles. As a child, I became upset or overwhelmed very easily, especially when peers pointed out my differences. I wanted to be friends but the idea that I’d have to “fit in” in order to do so was perplexing.

Why couldn’t kids just accept me as I was – an empathetic chatterbox, happy to talk about animals, fandom, storytelling and singing?

At my primary school I had one or two friends of my own age, but not much beyond that – and I was bullied quite horrendously during my final years there. While I enjoyed the academic parts of school, the playground was a confusing and at times scary place. I wasn’t interested in playing sports, tag games or climbing on the play equipment, and I frequently misread social cues. Often I spent breaks alone, reading or wandering the playground, telling stories to myself.

The other thing I did during recess and lunchtimes was play with the little kids. As the oldest of my siblings and most of my cousins, I was used to interacting with younger kids – and they were a lot more forgiving of my traits than my peers.

It was from these early encounters that I began to see that working with children could be something I was good at.

At the same time, I became increasingly aware that I was “different” in some way, though my known disabilities weren’t fully explained to me until high school. I had a limited view of disability, believing that because my challenges weren’t “obvious”, I should call them “conditions”. I wasn’t really “disabled” by them, I thought – what I saw in the media and elsewhere wasn’t me; so how could I claim the label?

High school was even more challenging. The emotional regulation and social difficulties continued, joined by executive functioning difficulties that had probably always been there but became more noticeable as I progressed through year levels. My family couldn’t figure out why I struggled with remembering to do certain tasks – and I didn’t understand either.

In my later years of high school, my mother suggested I do an allied health placement for work experience week, as she could see me doing well there thanks to my caring nature. It took me another year or so to properly settle into my choice, but by my final year I was decided. So I went off to uni to become an occupational therapist, determined to specialise in paediatrics after that.

It was around this time that I became aware of a more positive, inclusive view of disability.

I joined social media in my last year of high school and while that had its own challenges, it also exposed me to the work of disability pride activists like Carly Findlay (an appearance diversity activist and public speaker), and Stella Young. Through reading their perspectives, I began to consider that I didn’t have to be a certain “level” or “type” of disabled to call myself that.

At uni, I was exposed to the occupational therapy perspective, discovering that my use of Google Calendar to keep my school weeks organised meant that I was “OT’ing myself”, as one of my subject coordinators put it. It was also at uni that I met someone who knew what Dandy–Walker Syndrome (my primary known disability) was – the then-first year coordinator and paediatrics subject coordinator.

I still remember that feeling of being seen and understood that our first conversation gave me. I seek to echo that in my practice today.

I learned a lot about myself over the next five years as I navigated occupational therapy theory and placements. Partly this was in a practical sense – the transition between high school and uni was a big one for me, so I began part time. I commuted for the first few years and had to adjust to the differences in public transport between my hometown and Melbourne. This led to more than a few meltdowns before I learned how to plan for several options, use Google Maps effectively, and allow plenty of extra time. It’s still a work in progress, but at least I’m less likely to melt down over an unexpected public transport delay these days!

The other shift was internal. I began to curate my social media feed to get perspectives of Autistic and other “neurodivergent” people. Through reading these, I further expanded my understanding of disability and neurodivergence. At first, all it meant was realising that with my congenital disabilities I too fell under the neurodivergent umbrella and using that to better inform my own understanding of myself. After some time, however, I began to realise that while it could be overlap, a lot of what the Autistic advocates I was following called Autistic experiences also described me.

As I continued to learn about Autism, I became convinced that I was Autistic. I joined Facebook groups and asked questions on pages and blogs. I still struggled with internalised ableism about whether I was “Autistic enough”. Some days I still do. But increasingly, I’m leaning into all I know and all I’m continuing to find out about myself. I’ve embraced my sensory differences – for example, last year I bought a pair of high-quality noise-cancelling headphones, which have enabled me to filter noise. That is a huge win for me, and it’s an occupational therapy-based one at that (i.e., another “OT-ing myself” moment), led by advice from fellow Autistics.

The more comfortable I feel in my own neurodivergent skin, the more I want to help kids to feel the same way.

I want more children to have their needs understood and met. I want more Autistic children to have the opportunity to build their supports that enable them to feel regulated, less anxious, and ready to take on the world. I want more children to feel Autistic joy. Right now I try to do that through my work at the school, as well as some ad hoc private work. I have dreams about where I want to take this in the future, too.

Recently I’ve been reflecting on how I, as an adult Autistic professional, can help to empower my students. Occupational therapy is a profession that lends itself to activism and advocacy. It is my belief that those like me with more privilege should use it to listen to, support and amplify the voices of those who have less privilege. I have gained a lot of understanding from listening to black Autistic advocates, such as Riah Person and Keah Brown, share their experiences and considering how they’re different to mine. This has come into greater focus for me in the past few weeks as the Black Lives Matter movement has gathered support. A large proportion of my students are not white. Many come from migrant families where English is not the main language spoken at home. I’m fully aware that these kids are more at risk for negative assumptions made by those in positions of power, including police. So a renewed goal of mine is to work towards change in this area.

My overall goal in everything I do with the children I work with is to assume competence. It’s on me to make what I’m saying understandable to all and ensure that my students are able to participate in what we’re doing. It means a play-based, child-led, occupation-centred approach that does not try to change them into someone they’re not.

Part of that, for me, is having the courage to be more open about my diagnosis now it’s official.

I hope that in doing so, I can better use my combination of lived experience and professional learning to encourage Autistic children and their families and communities to be more truly themselves in environments that support their needs.

 

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