To mark Autistic Pride Day 2022 (Saturday 18th June), our Peer Development Worker Gill Loomes-Quinn has written a blog about what it means to her. Writing about her experience of doing her PhD, Gill covers topics such as tenacity and self-belief. Read her post below:
This week marks Autistic Pride Day 2022. June 18th every year is the day the autistic community chooses to be visibly autistic and to share our views and our perspective with the world. There are other times in the year where “autism awareness” is at the forefront of society’s consciousness. But this is our day.
For this year, I would like to take the opportunity to share some experiences I have had over the past months that have challenged me alongside what I have learned about myself as an autistic person through those experiences. While much of this story and its context is uniquely mine, it is my hope that other autistic people (and our allies) will take something from it and that it will help people. I have structured my thoughts around what I think my experiences have taught me about autistic pride.
Alongside working with Leeds Autism AIM, I am also doing a PhD (in mental capacity law). I love my work. I am proud of it (‘pride’ again…). But health challenges (some relating to autism) have ground me down in recent years and at various times I felt like giving up. I am not at the end of my PhD yet – and there’s still a lot of work to do. But I think I am at a point now where I can ‘see the wood for the trees’ and I thought I would take Autistic Pride Day as an opportunity to reflect on what the trials and tribulations of doing my PhD have taught me about being an autistic person.
These are some of the things I have learned:
Pride as Tenacity
Like many other autistic people, I am sometimes quite rigid and inflexible in my thinking. This applies especially to adherence to rules, policies, and expectations. When I started my PhD, I was certain I would finish it in the time expected (and funded). I knew some people took longer in certain circumstances, but I could not have imagined I would have been one of those people. This was not because I believed I was ‘better’ than those other people, but because of utter fear about what would happen if I needed to diverge from what was expected.
Unexpected diversions terrify me because they require on-the-spot thinking ad problem solving. And I had spent my life prior to my PhD doing whatever I needed to do to avoid such changes of plan, regardless of the cost to me and my health and wellbeing. If someone asked me to do something, I would say ‘yes’ and take on the work. And I’d allow others to dictate deadlines to me, and then work as much as necessary to meet those deadlines. The flexibility to set my own agenda and the boldness sometimes to say ‘no’ were beyond me.
This strategy worked for me (just about) until, again – like a lot of autistic people, it became too much. And the pressure I’d put on myself, and the squashing down of daily terror, and the grinding through brain-fog and exhaustion became unbearable. My health got progressively worse and existing physical impairments began to affect me much more severely. I found myself increasingly having to cancel plans and miss deadlines. I was no longer a person who (pretty much) ‘always delivered’. And, of course, this began to affect my PhD.
Over time, working on the PhD began to feel like torture, as it forced me to confront the extent of my perceived failure. I would sit and try to write, and gradually spiral into depths of shame and self-doubt. That is not a position in which anyone puts themselves willingly, so it became harder and harder to confront any work I associated with my PhD. This predictably increased the feelings of guilt and shame in a devastating feedback loop – work was emotionally painful, but the avoidance of work was also emotionally painful. I couldn’t win.
Ironically, it’s probably partly thanks to my inability to initiate change that I am still ‘hanging in there’ on my PhD journey. Maybe if I were more able to plan and communicate changes of course in my life I might have ‘jumped ship’ before now – and I’m actually really glad I haven’t. So, I’m grateful for that. And I guess this proves that many aspects of autism and autistic experience can have positive as well as negative implications. But whatever it is that has kept me trying to find ways to make progress – that has kept me chipping away at that rock while heaving it up the mountain – I am so glad I have done. I have learned such a lot about myself and about being an autistic person in academia.
Before starting the PhD, I thought I had a good understanding of how being autistic impacted my life, but being put in this new, prolonged, and demanding context has given me new challenges to rise to, and new ways of thinking. I feel that if I hadn’t put myself in this position, and then had the tenacity to stick at it, I would have missed the opportunity to learn these lessons about life, the world, and my place in it.
My tenacity is probably borne out of what many people understand as the challenges of ‘autistic rigidity’, but it has got me through times when I might otherwise have given up. And I’m proud of that.
Pride as Community Support
One of the biggest changes in my PhD life over the past year has been in my academic support. I have had access to many different types of support in different contexts over the years but each of these has brought at least as many issues as it has solved and hasn’t resulted in me making the progress I’d hoped. If anyone else (autistic or not) talked to me about struggling with support, or their support not working, I would suggest that perhaps the support needed changing. But where I was concerned, I would readily assume the problem was with me. I think it’s easy to fall into that ‘trap’ when you’re the one with the diagnosis.
Recently though, I have gained access to new support – with two people (in different roles) who are both neurodivergent themselves. In spite of having spent my career working in various ways to support autistic people and advocating the benefits of peer-to-peer support this is my first experience of being ‘on the receiving end’. And it has been a revelation to me. (1) Because we are often ‘on the same wavelength’ meaning that I have to put in less effort trying to find the right words to convince the person supporting me of my experience. This means we get much more quickly to the point of looking for solutions. And (2) because we are starting from a position of equality. It is not someone with a diagnosis being helped by someone without that diagnosis. And that means it doesn’t feel like I’m the (only) one who is broken.
This is important because while no one who has supported me has ever said, or given the impression, that they believe me to be broken, the way our relationship was set up, and the foundations it rested on meant that I often couldn’t help but reach that conclusion for myself.
The ways in which our community is coming together to develop opportunities for peer support and learn the skills to help each other in ways that work for us is something I have watched grow over the past two decades I have been involved in this field of work. This year, for the first time, I have had experience from the other ‘side’ that has given me a more complete perspective. And this in turn is having an impact on how I support the autistic people I work with. We learn from each other. And I am proud of that.
Pride as Self-Belief
There is so much in the world that tells us as autistic people that we are broken – that we fail to measure up to the expectations and requirements of a society developed to prioritise the needs and preferences of the neurotypical majority. We often find ourselves stretched to our limits on a daily basis – maybe in the context of doing a PhD, or maybe by writing an email or making a phone call (other daily tasks that can bring me to the point of giving up). And the very fact that we are all here, keeping moving forward in the face of all the adversity and all the things that need fixing to make our society a fairer, more equal place for autistic people, should be cause for celebration.
So, I hope that this Autistic Pride Day we can reflect on how much we achieve – as autistic people and as an autistic community: the families we’re part of, the children we bring up, the jobs and volunteering we do, the hobbies we have. I hope that you have had opportunities to grow in the past year since we last celebrated Autistic Pride.
And if the year ahead gives you rocks to push uphill, I wish you the tenacity you need to keep going, and the community support to reach your goal.
