Actually Autistic Me - An Article for World Autism Day 2022
An article by Hannah Ravenswood for World Autism Day 2022
Actually Autistic Me
A few days after my 41st birthday, I received an email containing a report from Oxfordshire Adult Autism Diagnostic and Support Service. I opened it and immediately looked for the words I was really hoping would be there. And they were. “It is our clinical opinion that Hannah meets the criteria for a primary diagnosis of Autism Spectrum Condition”. I then looked in more detail at the report, because in my mind I still wondered if it would show I only just met the criteria. I did not. Across the board my scores confirmed that I very much met the criteria. It wouldn’t have mattered if I had only “just” met the criteria but for me, it did. Because seeing those words and that confirmation was a huge relief. It turned out that the reason I find some things difficult isn’t because I am broken, or not capable or not competent (I thought all of these things were true for a very long time). My brain is just different. And now I had a reason why some things are challenging for me.
And at last an explanation as to why I had struggled so much with the switch to everything being online during the pandemic. I had a reason as to why, unlike my colleagues at the time who said they sometimes felt “a bit tired” after hours of meetings or running workshops I felt physically sick, had severe migraines, lost my appetite completely, often lost the ability to speak or find words and didn’t recover in any shape or form for days afterwards. I had entered a cycle of working and spending every weekend recovering. Or, to be honest not really recovering. But recovering just enough to be able to log back onto Teams or Zoom on a Monday morning and start all over again.
It was this not quite ever recovering from endless online meetings and attempting to simultaneously learn and deliver online workshops having never done anything like that before (experiential learning can be a powerful thing, but for me it was utterly debilitating. I was wrecked.) that led me to begin to ponder whether there might be something else going on. I already had autistic friends and colleagues and I already knew that I related to much of what they shared about their experiences. I started to dig deeper. I found one of the questionnaires used by the NHS to establish whether or not a patient might be referred for a formal diagnosis. I did it over and over again to check that my results were consistent and I wasn’t accidentally trying to make it fit out of desperation. I was, by this time feeling pretty desperate so anything was possible.
A routine telephone appointment with my GP, where we were talking about my depression and anxiety (which I have had for years, and have been on medication for) and my general health and wellbeing resulted in me plucking up the courage (right at the end of the call after she said “is there anything else you’d like to talk about?”) and saying the words out loud for the very first time “I am beginning to wonder if I might be autistic”. I was terrified. I needn’t have been. The first thing she said after she’d asked me a bit more about what had been going on was that she had referred six other patients who had similar experiences to me since lockdown began. All of us a similar age too. There were more questionnaires to be completed, including one about my early development that my Mum completed. And then another email saying I met the criteria for a formal assessment. I was lucky, I only had to wait nine months. In other parts of the UK, the waiting time can be years.
If anyone wants to know more about the assessment please drop me a line (contact details below). I wanted to instead talk about some of the things that have helped me and the impact of 41 years of trying to fit into a world not really designed with an autistic brain in mind.
One the most helpful things for me has been other neurodivergent folks, especially those who are autistic and/or have ADHD. I have a lot of affinity with both. And finding ‘my people’ continues to be absolutely vital to me continuing to understand myself. For all its toxicity, I have found spaces online via social media that are a vital part of my life. The hashtag #ActuallyAutistic is a great starting point on Twitter. I also came to understand just how much overlap there is with the autistic community and the Queer community. And even more overlap with the autistic community and those of us who are non-binary and/or trans. Coming to realise that non-binary was a better fit for me was another unexpected outcome of my autism diagnosis. There are more of us neurodivergent types out there (whilst I am here, I use neurodivergent because it’s become commonplace to talk about neurodiversity when people actually mean neurodivergent – we are all neurodiverse, but only some of us are neurodivergent). So many things started falling into place. And more confirmation that I wasn’t the only one. Always a good thing.
Before I turn to the future I wanted to talk a bit about masking. When masking is talked about within autistic circles it’s about the extent to which we feel pressured to supress some of our behaviours or to try and change the way we interact with others and behave in the workplace (and at home) that seeks to fit into a more neurotypical world. The world of work and society more broadly is set up to support the majority (neurotypicals) and not the minority. I don’t want people to feel bad about that, it’s just the way it is. But things are, at least in some places beginning to change.
Things I have learned to do to try and fit in:
- Maintain eye contact (although it causes me pain).
- Engage in small talk (although I don’t see the point of it at all).
- Sit or stand still and not fidget (although it is really hard).
- Rehearse and script in advance what I need to say in a conversation or in a meeting and hope that I manage to say it at the right moment. More often the moment has passed and what I need to say goes unsaid. Or it comes out too late. Either way, it’s not great. This is why communicating via text (email, instant messages, WhatsApp is SO much more accessible for me – I have time to craft responses and consider my words rather than worry about them not coming out right. Or them coming out in the wrong order (a sign of overwhelm for me).
- Not show visible distress when there is too much noise (supermarkets, shops, large gatherings of people, even a bus with too many people on it). Instead I have headphones or noise-reducing ear plugs which definitely help. Although in some situations, these things are still seen as not being quite acceptable. So I go without.
- Last minute changes – I know lots of people say they find last minute changes, say to a meeting time or a venue a bit stressful, but I can sometimes feel utterly paralysed by this. But I have learnt to deal with it in the moment, and leave the fallout/recovery till later. It is unlikely no one else would know just how panicked I was. Or just how unsettled I was. Google street view and the accessible buildings guide for the University are absolute lifesavers – being able to research in advance what a building looks like and how to get into it is so helpful.
Other things I find challenging:
- Labels in clothes – they are removed as soon as they are purchased.
- Textures of some clothes – so I have a wardrobe of the same clothes, in different colours but essentially a style that works for me. If there is a rogue label it feels like I am wearing a cactus.
- The sound some lighting makes – I hear electricity humming. It sounds like a weird/cool superpower. It isn’t. And some lighting makes me feel ill full stop.
- The sound and texture of polystyrene. It makes me feel physically sick and I cringe all over. My solution is to try and avoid at all costs.
- The sound of a ticking clock – all my clocks at home are silent. The sound becomes so amplified it overwhelms and becomes impossible for me to focus on anything else.
- The noise other peoples phones make – all the notifications and ring tones are pretty overwhelming. Mine are all always on silent. I check my phone regularly enough but can’t cope with it making gazillions of noises all the time.
- The texture of some foods – this is a common one. Flavours and textures can be too intense or uncomfortable. Also, food must be eaten in a particular order on a plate. Plates must be turned the right way round (I just supress this urge if I am ever eating out). And needing the same food. I do have a varied diet, of sorts. But it largely just cycles round the same meals.
- And lastly (there are so many more) – I can’t handle multiple tea bags (before they are used). I find it hard to put my hand into a box/jar or teabags. It makes my toes curl. My solution is to largely drink coffee. Tea bag avoidance works for me.
(A note: these challenges and things that I struggle with are due to my ability to process sensory stimuli, it’s not the same as not liking something or finding something a bit uncomfortable – these things have very real, debilitating consequences for me).
Something else that happened a few weeks after my diagnosis. I changed jobs. I left the department I had worked in for over 21 years. It was absolutely the right thing for me to do, but it was also a huge upheaval.
However, it also presented me with an opportunity for a new start, a new beginning and an opportunity for me to feel able to be my authentic, autistic self. And for that I am eternally grateful. I love my team. I love my job. I love that my colleagues make me feel safe enough to be me. And to maintain better boundaries. Hand-on-heart, being a part of the ED&I team allows me to unmask in ways I never anticipated. And they don’t think I am weird. Or broken. Or not capable. Or incompetent. At all. They embrace me for who I am. And so does the wider divisional office. A huge privilege. And one I don’t take for granted. I never in a million years imagined I would be co-facilitating a session on privilege and inclusive leadership to one of our most senior committees (Divisional Board) and would feel totally at ease in saying out loud ‘I am autistic’. But I did. And it was ok.
I also now double lanyard when I am onsite. I have my rainbow lanyard as well as my sunflower lanyard (which is used to indicate someone has non-visible disabilities). I had been wearing it during the pandemic as I have been disabled since I was 11. But I have since added to my lanyard. It now has a card on it saying ‘I am autistic’. This may feel like a step too far for some people, but for me I find it empowering. I also find it has the added bonus of people giving me more space in shops and on buses (a HUGE win for me).
My journey of discovery and acceptance is ongoing. I have 41 years of unlearning and re-learning and reflecting and re-discovering to do. And I know with the support of family, friends and my wonderful colleagues I am in the best possible place to do that.
If you have any questions about anything I have shared here, please do get in touch (Hannah.Ravenswood@mpls.ox.ac.uk) – remember no surprise Teams calls!
Hannah Ravenswood (they/she)
ED&I Facilitator – Training and Development
ED&I Team, MPLS Divisional Office