Understanding Autism in my Life

This year has been a journey for me. I started writing this entry in May, but things have changed a lot even since then. I have a son who was singled out as having some behaviour issues in school, which I won’t go into detail about, but they led to us making doctor appointments, and getting referrals for autism evaluations. The process led to me receiving a greater understanding of what autism is, and everything that makes up a diagnosis. Oftentimes in the forms I had to fill out for him, I found myself thinking, “This sounds like me,” and “No wonder I didn’t think anything was unusual, because I’m the same way.” I learned that there’s likely a genetic component to autism, as it tends to run in families. So when my son was finally diagnosed with autism spectrum disorder at the end of March, I decided I was curious enough about myself to pursue an evaluation for myself.

It only took me two appointments with a new psychologist who specialises in autism to be told, “Yes, you’re clearly on the spectrum, and it’s fine for you to tell people that and talk about it if that’s something you’d like to do.” It likely helped that I’d compiled a list five and a half pages long of things I do or have experienced in my life that I thought may be linked to autism, over a range of the areas that make up the diagnosis, from social issues, to sensory ones, from my rigidity, to my obsessions. I’d always known about these things in my life, that had affected me; it just hadn’t occurred to me that I was so different from neurotypical that I was a different type of normal. When I received this news that I’m autistic, that’s how I viewed autism – because diagnosis now counts 1 in 68 people as somewhere on the spectrum. I don’t think autism is a bad thing, and having had it and managed to live okay all my life without knowing, I thought that it’s not necessarily a disability, though it could be, depending on where one falls on the spectrum. It’s just having a brain that processes information different from the “typical.” When I talked to my psychologist about this, he agreed that for me, it’s not a disability, and he found me very interesting because of how I’ve taught myself to adapt socially, and forced myself into situations that made me feel uncomfortable, despite my difficulties.

However, living with the knowledge that I am autistic for the last few months has changed my opinion, because now I’m noticing more the areas in which I am moderately disabled, and realised what I was actually fighting was internalised ableism, because I didn’t want to see myself as disabled. On my recent summer road trip, I didn’t drive at sunset/night until the end of the trip, when I had longer drives (El Paso to San Diego, and San Diego to Oakland). I knew I preferred not to drive at night, but I hadn’t understood exactly why until I had to do it on this trip. Here, I finally understood it’s because of my sensitivity to light. When there are particularly a lot of cars on the road, and I’m driving on highways at speeds that are 55+mi/hr, it’s a lot harder to see clearly, because the lights (headlights and tail lights) emit a beam several feet in diameter around the origin. Seeing that on dozens of cars on the road is almost sensory overload to the point I maybe shouldn’t be on the road (thankfully I’ve never been in an accident as a result, because I’m always an overly cautious driver anyway).

I have a number of similar examples that came up as I went through the process of realising I was autistic. I didn’t know sensory issues were part of autism until I kept getting asked if my son was sensitive to sound and touch. It even took me a while to realise he was sensitive to sounds, despite the fact some sounds would send him into a big fit. It was thinking about my son’s sensory issues, and those questions I kept getting asked, that led to me discovering my own sensory issues. See, as an adult, I’d adapted to avoid my sensory issues to the point that I didn’t have to think about them really. “Please don’t whistle because it hurts my ears,” was something I didn’t have to ask often. My aversion to touching raw meat – especially ground meat – was easily avoided when I could just peel the plastic off the meat and dump it into the pan to cook it. But I won’t make meat patties for burgers, because I don’t like how it feels. I’ll use a fork to mix ground meat and gravy when I’m making sausage rolls, and try not to touch any of the mixture when putting it on the pastry for the same reason. I’m constantly washing my hands in the kitchen when I’m cooking, whenever anything touches my hands. But it had never occurred to me until I was thinking about what could make me autistic that my aversion to those things was because of sensory issues. One night, after learning I’m autistic, I was in a bar having a conversation with people, and I was barely involved or focused on the conversation because the lighting and sound of the bar had put me into sensory overload, leading me to understand one of the reasons bars haven’t been the most comfortable places for me to meet and talk to people. It’s like my mind is awake to understanding more about how my body works now, and as a result, I’m struggling a lot more with issues I’d managed to adapt to and ignore in the past. I’m not sure the knowledge I’m autistic is better than when I was in the dark about it, even though technically I know it doesn’t change who I am as a person. I’ve always been this way. I was born autistic. I’ve always struggled with things. But right now, knowledge doesn’t feel like power.

I guess the major change in my life since I’ve learned I’m autistic is that, being public about it (I talked a lot about autism in the lead up to my psychologist appointments on Facebook, and after that, and then it was what I obsessively talked to people about in person a lot), I’ve given myself permission to actually lean in to my autistic behaviours rather than attempt to hide them all the time. I’ve cried more in public because I’m very emotionally sensitive and it can be very draining on me to try and hide that constantly. But it’s helped to be around friends who’ve helped me feel comfortable crying in public around them. On the other hand, it’s very easy for me to blame my autism for the things I can’t do. For example, I have a lot of amazing activist friends who will go out and march for the causes they believe in. They’re causes I agree with, and I’m always excited to see their participation, but at the same time, I wish large crowds didn’t send me into sensory overload so I could participate more, too. It’s not just the overwhelming sound. It’s the way my body processes empathy. I literally take on the emotions being experienced by those around me. This can be useful in times when I can’t read people’s facial expressions, but when I’m in large crowds experiencing strong emotions, it can be quite debilitating and/or overwhelming. My favourite example and experience with this, though, was when I was in Cape Town, South Africa the day Nelson Mandela passed away. When I walked past the town hall and encountered a group of South Africans singing and dancing to mourn his death. They weren’t crying; they sounded like they were celebrating his life. But being there, receiving their emotion into my body, I cried so hard just being amongst them.

This is one of the things I’m sure I experienced all my life, but had really learned to hide. One of the things I’d discussed with my psychologist was how, as a kid, I would get teased for being a “cry baby.” I likely seemed overly sensitive, and as a result of that, when I fractured my foot when I was younger, my parents thought I was fine because I always overreacted. I walked on that foot for a week before they took me to get it x-rayed. Not having any understanding of these sensitivities, and getting teased for them, likely also made my already difficult social issues ten times harder. I recalled for my psychiatrist an experience when I started high school. A friendly girl had seen me sitting on my own and invited me to join her group of friends. Part of me wanted to, but I didn’t go right away because I was so scared and unaware of how to socialise properly. There were a number of stupid and unconventional things I tried because of my lack of social skills in high school. Like, I couldn’t ask people directly for their phone number because I was too uncomfortable talking to people, so I’d use the phone book and look up their last name in it instead. And even after that, it was pretty rare for me to gather the courage to actually call it and talk to the person. One completely embarrassing example is when I anonymously wrote a letter (because I got his address from the phone book, too) to my then crush and told him to meet me somewhere, then when he and his friend showed up, I denied that I knew anything about it.

Though improv has helped me immensely when it comes to dealing with the social issues side of autism, the one note I would receive most from my director was “speak louder.” I’ve often had issues with people being able to hear me properly, and I’ve come to realise that it’s probably because of my sound sensitivity. When I speak at a volume that is “normal” to other people, in my ears, it sounds like I’m shouting. I don’t want to sound like I’m shouting. So this has been a struggle work past, and a hump I’ve yet to get over. On the other hand, I have a lot of autistic traits that are actually beneficial to being an improviser, which I can say because the things I get complimented on most in my performances are all things I do automatically because I’m autistic. Things like sharing my vulnerable side, because I don’t have the same sense of shame/boundaries that neurotypical people do, and as a result I talk about and say things those people are too afraid to say; or the same thing but with physical space – I’m not afraid to go up and touch people and make them uncomfortable to get an honest reaction out of them. I’m also often more emotional on stage, which brings a different life to shows that audiences often enjoy. I don’t just pretend to experience these emotions, either. I actually experience them in the moment. I’ve been trying to think about how I can teach people to improvise in the way I do, when it’s not something I’ve learned, just something I do. I like that people connect with it, and want to be able to help them open up in the same way.

I also recognise how incredibly fortunate I am to have found a psychologist who was able to put me on the spectrum after only two sessions with him. Women with autism are often under-diagnosed and not believed, in part because autism affects males and females in subtle and different ways, and most autism research has been done with males. It’s also a lot easier to diagnose children than adults (which is part of why I went in with examples of how I was as a child/teen). In the past, when I thought I had ADHD (which has some similarities with autism) instead, I was dismissed, not even being asked why I thought I was. I feel like there’s not enough awareness of autism in the field of psychologists for it to be recognised unless you see someone who actually specialises in autism like I did. The biggest relief that came with understanding, I think, was knowing where my history with depression and anxiety came from. It wasn’t my fault that I was born autistic, and could never figure out social norms.

Whilst the autism spectrum is an interesting place to learn I belong, I can really only talk about how my life is affected by it, not how autism affects everyone else on the spectrum. This comic does a much better job of explaining how vast the differences those on the spectrum are than I ever could, and there’s no sense in my detailing it over again. I do feel like I’ve surprised a few people when announcing I’m autistic, because the lack of understanding around what autism is, and also because of how I’ve managed to adapt to the world around me, so I’d figured out how to disguise, hide, or cope with many of my autistic traits so as to pass for “normal.” As a result of this surprise, though, I’d love to see greater understanding of autism, and a wider representation of the spectrum in the media. The limited representation tends to promote the idea of autistics being socially awkward male math geniuses, with not much else. I’m not sure I’ve ever seen any female autistic representation (unless it’s possible they just weren’t labelled as autistic). This may end up being my next writing endeavour, with my focus on expanding diversity. I’ve tended to steer clear of writing disabled characters, thinking I didn’t have the experience to write about them accurately (unlike my ability to write bisexual characters as a bi woman, and writing other ethnicities because I know a lot of people of other ethnicities), but now I know I was wrong about that. I know I can write autistic characters with accuracy, because I know what it’s like for both my son and myself to be autistic.

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