Covid-19

This pandemic has me quite anxious and stressed. But I think I’ve been coping alright.

Firstly my routine has been shattered. I was laid off from my job and I won’t be volunteering for the foreseeable future. Also the bimonthly Magic the Gathering events I host have had to be cancelled. The future is unpredictable and my routinely duties cease to exist. Without my routine I’m very on edge and I wouldn’t be surprised if I end up in a state of meltdown soon. On the positive side I have no responsibilities outside of the home anymore, so I can just stay home. Fortunately I don’t rely on my job financially, beyond saving up for university.

I think I’ll create a new routine of doing things for my mum. She works in healthcare, so she’s really really stressed already, and I suspect that’ll get worse. I’ll find out what more things I can do for our household. Maybe cleaning and gardening. I could cook more too. I’m going to try my best.

Honestly I’m scared. I don’t know what’s to come. I don’t know if I’ll be able to get a job to save for university this fall. I don’t know what’ll happen regarding university this fall. I don’t know when I’ll see my friends again. I don’t know if things will ever go back to how they were. I don’t know what to expect. And I’m scared for my Nana.

This whole thing is bizarre. I’ve read that no one alive has gone through anything like this. Seeing how people respond has been surprising, like the whole toilet paper thing. It’s so weird seeing so many empty shelves. Stores are weird in general really. People actually give me personal space and don’t act offended when I try to put more distance between them and me. Less people seem to be in the stores where I live too; however, somehow they seem just as excessively loud. Practically everything being closed or cancelled has also been strange. It’s so different.

Despite all of the craziness I think I’ve been handling this alright. I’ve been reading more to distract myself. It’s got me writing in my journal more, which helps me make sense of the world. I’ve been stimming more than normal, even in public, and that’s helped. Also I’ve had my brother to talk with about what’s going on so that’s helped.

I’ll have more time for my next interactive fiction project. The same goes for my ongoing book. I could be productive in this situation.

I hope I don’t sound selfish. I get that my difficulty with lack of routine is insanely minor compared to people actually dying. I get that my 18th birthday not going according to plan isn’t a big deal; I have my family with me and that’s what matters.

Anyway, stay safe everyone. Be cautious.

My Horrible Visit with a Pediatrician

 Since I first returned to my blog I knew I was going to write this post. I’ve taken my time writing it as I’ve tried to recall as many details as I can. It was an extremely frustrating occurrence, so it’s been emotionally tiring to return to what happened. Here goes.

 I’m currently seeking formal diagnosis for autism. I already know that I’m autistic, but I really want that to be formally recognized.

 At the beginning of this process I was referred to a pediatrician, supposedly this guy was an “expert on autism”. I was nervous, but I thought he’d listen; I thought he’d agree with me. At first it almost looked like I was right. He seemed nice. 

 He gave me a questionnaire and started asking my mum questions. I filled it out, going back to the trickier questions at the end. A couple of  times he seemed to be talking to me, but if I spoke he’d tell me I should be focussing on the questionnaire. He didn’t give me a chance to say anything. 

 Then he asked my mum a question that really put both of us off. “Did she hit her her head as a kid?” I was in the room, my presence being ignored by him entirely. He would ask my mum this same question two more times throughout the visit. 

We offered to show him my notes, but he refused them. And he didn’t seem to be listening much to my mum. 

 After some time he wanted to talk to me alone. He just asked me again whether I was depressed or suicidal. Still he hadn’t asked about any autistic traits. I knew by this point that none of this appointment was going right.

I was taken to another room to walk on my heels (among other things). And he decided all my bad coordination was due to tight achilles tendons (not just poor coordination in my feet and legs though). He decided this is why I actually do poorly at team sports (obviously my challenges socially play no role).

 Next he decided I must have ADHD because of my repetitive behaviours, despite my lacking nearly every ADHD trait. Then he questioned my mum’s ADHD, seemingly not believing her.

 At this point I wasn’t really processing what was going on anymore. The rest is what my mum recounted. 

 He decided my meltdown/shutdown was a panic attack. It wasn’t, I’ve had those before and this wasn’t like that. 

 I was no longer able to speak or listen, my mum was upset enough for both of us. He said, “you have to learn to control yourself,” and then, “you have good qualities too.” 

 Finally he had the audacity to say he didn’t think I’m autistic after refusing to talk about any autistic traits, refusing to read my notes, and grasping at endless straws for some other explanation. This I didn’t really process until a fair bit later. There was almost no coherency in my thoughts at all. 

We got home at 6pm and I was immediately in a dark room, with a blanket over my head, a pillow over my ears, in a pile of stuffed animals, no dinner. I didn’t move from this position for 18 hours. And my thoughts remained quiet and incoherent for several more hours after this.

A while later I got the rare opportunity to read the report he wrote, referring me. It was quite inaccurate to say the least. He said I have an autistic aunt, the autistic family member is actually my cousin not my aunt. He said I was planning on going to university but didn’t know what I want to do. We’d talked about my majoring in computer science for a good 5-10 minutes. He also wrote that I had great eye contact, at no point did I do eye contact. I guess I looked at his face enough otherwise that he thought it was eye contact. Regardless even if I had done eye contact it wouldn’t have made me non-autistic. He wrote that he didn’t think I’m autistic, but apparently I’m basically everything else. According to him I’ve got every sort of anxiety (I don’t) and probably ADHD (once again, not true). Instead of the truth he gave me a jumbled, inaccurate, alphabet soup of diagnoses.

This was a horrible and overwhelming experience, either the worst or second worst in my life (Pretty lucky that this was one of the worst, I know that). Needless to say I’m terrified for my formal assessment. I’d known autistic girls and women can have difficulty getting an accurate diagnosis, but for some reason I hadn’t thought that would apply to me. I was wrong.

Where I’m From

In grade nine my peers and I each wrote a poem called “Where I’m From”. I hadn’t wanted to do the assignment, so the end result wasn’t great. Despite that here I am three years later wanting to give it another go. Please note I’ve got very little experience with poetry.

Where I’m From

I am from the river named after Peace
from climbing haybales 
watching northern lights
and listening to the wolves howl
 
I am from what seems like history
A hopeless battle I've fought all my life
all underwater soon
only memories

I am from a castle built of blankets and chairs
an old blue wagon that could house an entire world inside
and stories told while snug in bed

I am from teachers, scientists, and farmers
Women and men I wish I could know
Those that fought physical stuggles
and those with battles in their minds

I am from a school that didn't understand
that thought avoiding sensory overload was misbehaviour
I'm from broken friendships 
and confusion
I'm from a world that doesn't think like me
a world that demands eye contact
a world with mysterious social cues
I am from a world that makes me feel alien

Days with Shaylin

It would be an understatement to say I haven’t written in a while. I’ve never really used a blog before, so I tend to forget about it. Despite that I really like the idea of blogging, so today I’m going to try my hand at another entry.

As a grade 12 student I was recently tasked with completing an end of high school project, the capstone project. Basically it’s a rather vague and large project that’s supposed to show your abilities and interests, while challenging you. At first the idea of something so open ended was quite frightening.

Then I had the idea. I already knew I wanted to create an interactive fiction game, but I hadn’t been sure about the subject matter. It took a while for it to click that my excessive research on autism (having recently discovered that I’m autistic) could be put to use. My learning about myself could be part of my project.

So I brought the idea to my teacher, an interactive fiction game with an autistic protagonist. He said yes, so I was set to begin making this idea into something more.

First there was stage 1, the ideas and research stage. I’d already done a lot of research so that was covered for the most part. I wanted to do more than read articles though. I set about finding interviewees. I didn’t want the protagonist to be a carbon copy of me. In the end I found 10 people that were interested. The interviews turned out to be the best part of making the game. I’d never really talked to other autistic people before. It was the first time I realized that I’m not alone in how I think and the things I do. The feeling was incredible. Throughout November I also outlined the plot and characters.

It was slow going figuring out the characters. I had a fair idea about Shaylin, but not those around her. In the end I gave her younger brother (I can’t imagine not having one) and a mum that can be a bit much. Her friend came to me next, and I knew what she was like as soon as I imagined her (though I changed her name right before I sent the game out for testing). Then there was the not so great subsitute and awful Max. The only regrets I have character wise is how little her dad appeared and that Nathaniel didn’t appear at all. I’m not used to the idea of a two parent household, so I struggled with the inclusion of multiple adults in the same house. Fortunately Nathaniel will be very present in the sequel.

Once stage 1 was complete I moved on to 2, which was writing the game (and editing that writing). This ended up going past my end of December deadline and into Jauary. Mostly this was because I dropped an episode and then added a different one. Writing the story was emotional for me as I took a lot of inspiration from my own experiences. Also I’m still getting used to writing interactive fiction (this is only my second game). In the end all of the game ended up at about 12,000 words.

The final stage really shouldn’t just be one stage. It included inputting the writing into Twine, editing and recording audio, coding that audio into the game, coding the game’s visuals, getting feedback from beta-testers, and finally a lot more editing. It felt like numerous stages. Putting the writing into the game was slow going and could be rather tedious. I found the editing of the audio extremely overwhelming (I had not anticipated this issue). Coding in the audio and visuals was my second favourite part of the whole process; I loved the trial and error of it. Then there was the beta-testing, which also turned out great. I found some very helpful beta-testers. The editing was once again tedious, fortunately there wasn’t a crazy amount of that though.

That was it. The game was done. It took 3 months. I’d done it. I was actually really proud of the end result.

I submitted the game to my teacher and got…

wait for it…

100%

With the project done I shared it everywhere I could think of. I’ve shared it on Twitter, Amino, a number of Facebook groups, on the interactive fiction forums, and I even shared it with AutismBC. So far I haven’t gotten much feedback, but all of it that I have gotten has been wonderfully positive. I still haven’t shared the game with my immediate family, aside from my brother (who recorded music for the game). For whatever reason I find it easier to share this personal game with strangers. I intend to share the game with my family in March. I just have to work up to that.

If you’d like to learn more about the game, then here’s the link to the website: https://dayswithshaylin.wordpress.com/

Or you could play it online or download it at: https://ann-hugo.itch.io/days-with-shaylin

Eventually there’ll be sequel (who knows maybe even more than one). It’s still in the planning stage, but I’m already very hyped. I might even provide regular updates on the game’s developement if I feel like it.

I think you can expect more regular blog posts from me. I haven’t really written any since I was 12 (excluding the one about the white whale), but this has reminded me how much I enjoy writing blogs. I’ll probably keep it mostly relating to autism, writing, and programming (specifically Twine related at the moment). I might also review books and movies though (I recently watched a movie that turned out to be my second favourite movie of all of the ones I’ve seen).

-Ann