My autistic journey out of the pandemic.
I, like many of those whose stories you will have been reading this April for Autism Awareness Month, am one of the many autistic women who have received a late-stage autistic diagnosis…
I received my official diagnosis in August 2022. Like many, my suspicions were raised somewhere in the middle of the COVID-19 pandemic amidst the lockdowns and constant changes to rules. Suddenly, government restrictions were lifted, leaving it up to the individual again to decide the right thing to do. As any Autistic person attests, constant change is our worst nightmare, especially when there are clear instructions and then suddenly none. Rules bring order to our lives. It was during this time that my anxiety hit an all-time high.
In 2020, I started recording the first season of my podcast ‘Ainslee Hooper Chats with….’ The season featured a series of conversations with individuals with various disabilities. Two of my guests were Autism and Disability Advocates Yenn Purkis and Ruby Susan Mountford. I remember speaking to Yenn about their Autistic experience and thinking, ‘I do that too’, but still, I had no idea at the time I was Autistic as I didn’t present the way I knew so many others to do so. As I’ve learned, being Autistic is different for every individual; we might share some traits with some people and some with others, or not at all. Check out Chloe Hayden’s Youtube Channel, as she has some great videos on the topic.
After several conversations with Autistic folk (not about my suspicions, as I didn’t *really* have any at the time, ok, maybe just a little), I, like many women throughout the pandemic, decided to do some Autism online tests. Surprise, surprise, over the months that I took it, it put me in the range of being highly likely to be Autistic. That was somewhere around late 2020 or 2021 (the ‘pandemic years, ’ as I refer to them, are a bit of a blur). So with that knowledge, I just left it and didn’t consider it further. At that point, it was just interesting to me.
When lockdowns ended, the thought of returning to things the way they were previously was overwhelming. It wasn’t just a case of getting used to it again or doing it, and it’ll feel better. It was a case of not having the mental energy to psych myself to do those things again. Although my anxiety was high during the pandemic due to the constant changes, I also came into my own. I was running my business how it worked for me (and my clients). After my diagnosis, I realised the dread I felt of things returning to “normal”, having to go to face-to-face networking events etc., was because of what is known as ‘masking’. I didn’t realise it, but during the pandemic, I started to become myself, dropping the ‘mask’ of trying to fit into the neurotypical world. I was faced with the idea of being the person I was before the pandemic, and I knew I couldn’t do it. I didn’t know how to, nor did I want to. It was like having to be someone else. Being undiagnosed (as most females are), with many of my Autistic traits excused away because of my physical/neurological disability, or just being “too sensitive”, a “picky eater”, or a plethora of other things others in the Autistic community will be familiar with, I just went with it and fit in as best I could. I assumed the anxiety I felt from doing everything that filled me with dread was natural, and I just needed to try harder. The more Autistic people I met over the years, the more I realised I had in common with these people, and I felt at ease because I could be myself. The hunger to seek a diagnosis started to rise.
In 2022 I started competing in Strongman/Strongwoman. I hired a sports nutrition coach to ensure I could give it my all. It was this decision that would lead to my official diagnosis. In the past, I had seen dietitians and nutritionists about my eating. I even tried the sports nutrition path previously, but to no avail. I could not eat the quantity or some things on my plan. I would cry into my plate because of how much was left to go, and I couldn’t handle eating some of what was there. I now know it’s because of sensory issues. The texture of the food makes me want to vomit (I’ve never had fairy floss because the idea of putting wool in my mouth makes me gag). My now nutrition coach sent me a checklist of foods to mark off what I eat and don’t eat, and not surprisingly, the foods I do not eat far outweighed those I eat. Surprise, surprise, I found that many Autistic people have food issues. That was it. I decided at that point I needed to speak to someone about an official diagnosis to finally have an explanation for all these things I’ve mentioned. A referral to a psychologist to discuss what I called my “weird eating habits” led to a recommendation to my GP that I see a psychiatrist (as my psychologist didn’t specialise in Autism). Four months later, after one session with the psychiatrist, I was officially diagnosed as Autistic with Generalised Anxiety Disorder. The psychiatrist assessed the anxiety medication I had been taking for the past 20 years. As a friend had told me earlier that year, “You’re not meant to feel that way all the time”, and she was right. The difference the proper medication has made and knowing what it feels like not to be anxious 24/7 after 20 years is fantastic.
My diagnosis has also allowed me to look back at events that didn’t make sense but now make complete sense. The overwhelming feeling at social events because of the auditory overload, my disdain for small talk, and my inability to talk to strangers unless I’m in a room with people discussing a shared special interest (my special interest in Anthropology became my profession). In high school, I only care about one subject, Media Studies. All the other subjects were boring, but I gave Media Studies my all. I thrive on routines and order, can’t stand the touch of wool or the feeling of the breeze on my skin and clothes tags feel like needles. I also cannot sleep unless I have a weighted blanket on me. Fidget toys help me concentrate and settle (funnily enough, I used to fidget with an object when I worked in a call centre (and I hate phones) but never connected it until I found a similar thing at home), and stimming (for me, it’s listening to music, singing loudly, painting with beautiful bright colours, and when I’m anxious, rocking and holding my hand in a particular way) helps me regulate myself. The last two stims have only presented themselves in a few circumstances I’ve noticed when I’m highly stressed or upset. I also cannot sleep unless I have a weighted blanket on me. Only eight months into my official diagnosis, I am still discovering all the beautiful quirks within my neurodivergent self.
In January of 2023, speaking on Loretta’s Front Page on 94.7 FM The Pulse, I had the pleasure of meeting Sandee Facy from Hidden Disabilities Australia. Sandee spoke about the Sunflower Lanyard (Sunflowers are my favourite flower). The lanyard, wristband and pin provide people with hidden disabilities a discreet way of showing public-facing businesses and organisations who have received the training that some assistance, time or patience may be required. Yes, I have my wheelchair, but people can’t see my Autism, nor can they see my Generalised Anxiety Disorder, so showing this can start a conversation about what accommodations I might need to avoid triggers. There’s also a great journey mapper on the website so people can map out sunflower-safe journeys. Click the link under the image to find out more.
I want to finish by acknowledging my privileged position in seeking a formal diagnosis. I know this is not available to many in the Autistic community due to various barriers, so self-diagnosis is an accepted form of diagnosis. However, as I follow the rules and procedures (if they exist, I have to follow them), seeking a formal diagnosis was a necessary part of my journey. Without it, I would still be wondering ‘what if’, instead of looking at ways to make my life even better than it’s become since my diagnosis.
