Story by Marianne Hunter
I’ve been trying to write this since May, and honestly it should not have been this hard. I already had the base material: the presentation I did, or rather – failed to do, for PechaKucha New West. Turns out the thought of turning it into a semi-decent article alone is very overwhelming. If you knew me at all, you’d probably still not understand why something this small seems like a gigantic endeavour.
You see, the presentation was about the fact I have autism, among many other diagnoses that I’d been collecting since I was a teenager and how it affected my life, and that of my friends’ and family’s. I wrote down 20 bits that could be made into illustration by an amazingly talented friend that not only offered to be there as my support person – but ended up doing the whole presentation for me when I couldn’t. The organizers knew I was a flight risk, so they gave me the first spot! Unfortunately, not even that could help me. (Editor’s Note: I highly recommend watching the presentation linked to, above!)
How cool was it that I was offered to have a support person? Because that was a first for me. I’ve missed out on so many things because of a lack of support. Thanks to my diagnosis, I now know that my brain just happens to be different, and I might need extra help, or it might take me longer to accomplish things, and that’s okay. I might even ask for help on my own, except this time I didn’t need it.
Ever since I was a little girl, I always had trouble fitting in. I was very friendly, and I loved meeting new people, and I did make friends easily – but it was just very hard to keep them. I never knew what to do, or what was expected of me. I always had to watch how other people behaved so I knew how to act. I always liked to have my own routine. My poor grandma always indulged me. She would make me noodles, and then we’d watch Sleeping Beauty, every single morning before school. I went through different obsessions like Spice Girls, or Hair (the musical, obviously). The one constant is that I’d always watch it every morning before school – for weeks, or even months on end.
None of my friends seemed to understand me. I loved spending summer days at home watching movie, after movie, after movie; or trying to get through whole books in a day, instead of playing outside. Just like I never understood how they could only watch one movie before they got bored. Only one tv show episode. Not to mention they didn’t even like books. And when I did want to play with my friends, I usually felt like I wasn’t quite part of the group. It was very easy for them to ignore me, make fun of me, or even be mean. I didn’t understand all the social rules at play, and I was highly gullible. On days like these, I’d beg my mom to please, please ground me so I didn’t have to go outside and go through all that again.
Things didn’t get any easier as I grew up. I had to drop out of high school because of my anxiety. I never left my bedroom anymore. Things were so bad that it was hard to see more than ten seconds into the future. It got to the point that something had to give and one day I took every single medicine that I could find at the house, and just accepted that it could mean dying.Thankfully I messed up and didn’t take enough of the really strong pills, so all it did was a horrible reaction to the overdose, and a few days in the hospital. I can’t stress enough how happy I am that I am still here. I realized how much I scared people. I got more help and I got to meet my beautiful wife a few years later. I realized that there were things to look forward to, and that life could and would be better.
I decided to move to Canada to be with her, which I’m told was really brave. Because here’s this girl who spent most of the time in her bedroom, who couldn’t leave the house or take the bus, or do anything alone, really. She just up and left. Moved thousands of miles away, on her own, to an uncertain future, in a place where she’d never even been to.
It was fine for a bit. I thought maybe I was finally free. But of course the anxiety came back and it’s really hard to get better and to get help. You have to be a risk to yourself or to others, or end up in the hospital for a couple of times before they’ll even do anything for you; and even then you still have to wait for weeks. Unless you have the money and can go privately, but that’s not an option for many people.
Fast forward a few years and we decided to have a baby. Our fertility treatments finally took after over a year of trying. I had a really bad pregnancy, but the anxiety was fine for most of it. It just got really bad toward the end and it even worse postpartum – the worst it had ever been. But, we had our baby boy, and that’s all that mattered. We had a short stay in NICU and peds because he was a preemie, but other than that he was a healthy baby.
We started noticing some concerning behaviours when he was around two years old. No doctor ever believed us, and just chalked it up to him being a toddler, until one day a pediatrician actually asked if we were concerned about him and his behaviours. It was such a relief that other people saw it, too. After that, it took us a few months to get answers. We decided to have a private assessment because the waitlist for the public one was over a year long. He got his autism diagnosis, and we were able to get him the help he needed, and things started to look up. Not only that but I now had all these answers concerning my own behaviours – something I never dreamed I would have.
It was hard. A relief, but really hard. wasn’t easy. I didn’t want to have yet another label; I felt like I was collecting them: Generalized Anxiety Disorder, Panic Disorder, Major Depressive Disorder, Social Phobia, OCD, and all of it got worse postpartum. I felt like I was faking it at first, just looking for excuses as to why I couldn’t be like the others. It took me a while to be okay with it, and even longer to decide that I was worth the money we’d have to spend on a private assessment. There aren’t many resources for adults, and not a lot of doctors diagnosing us, and it’s next to impossible to get an assessment through the government.
The assessment took several hours of talking, and doing tests, in the span of a month or so. After the first session, I’d already been told I was most likely on the spectrum. I already knew that, so this was more for validation and proof that I wasn’t just making this up. I got my diagnosis, and now I had an actual reason for some of my behaviours.
All my quirks, the meltdowns, the sensory overload; all my obsessions that I couldn’t shut up about. I’m not going to lie, when Erin [Jeffery] told me I didn’t have to talk about autism, I seriously considered talking about Hamilton and Matilda (and if anyone wants to talk about this later… just shoot me an e-mail). I felt like this was more important, though, plus I get to talk about myself: my favourite subject!
Not to mention I no longer feel as bad about the meltdowns, and I am better able to leave a situation if I know it’s coming. I mean, it’s still kind of embarrassing, but at least I know they happen for a reason. For example, I no longer force myself to stop rocking in place as I know it’s just a way to calm down. I have the answers to all the why’s now, so I don’t feel as broken. I also learned that had I been diagnosed as a child, there’s a good chance I wouldn’t have developed many of my mental illnesses. I may have been able to be more productive, and to hold a job, and just function better. So I am extremely happy that they understand autism better now, and that other people will be able to benefit from the early intervention that I never got.
Of course that’s just my experience, and my experience only. It’s like they say: if you’ve met one person with autism… you’ve met one person with autism. I am very grateful that I got to write about it, and to try and share a little bit of what life can be like on the spectrum. I know how much it helped to be able to read personal experiences when I was going through the process of pursuing a diagnosis, so I hope this can help others as well, or at the very least raise more awareness and acceptance.