Autism in My Own Words Part 2

Autism in My Own Words Part 2

 

I can’t believe it’s been exactly three months since Part 1, and I had absolutely no idea when I was going to do this the time frame. I looked up to see what I had written to remember, and it said June 3. That’s three months, right? I talked about how exhausting a half-hour conversation was and to mask for that long, even though I wasn’t trying to mask in front of my friend but “in public.” I talked about how each individual THING was broken down into step-by-step instruction manuals, and that there weren’t really muscle memories for some autistic people. Parties were overstimulating because I was trying to filter out one sound in a sea of sounds of the same volume and no, my brain couldn’t filter out the background noises.

Today’s life looks much, much different. I’m part of several online Facebook groups, one community that has some of my favorite people in it, and have accidentally found a few people where I live who are autistic, just by being myself! Okay, by being autistic and gay… there’s a surprisingly larger amount of overlap between being autistic and LGBTQIA and allistic and LGBTQIA. Also, both communities tend to be a lot more accepting and open-minded of what others think of as “weird” or “not normal”. It’s actually kind of celebrated in most circumstances!

Tragically, a lot of us have shared pain and suffering when it comes to being diagnosed or told “you don’t look autistic to me.” Our healthcare system is broken for those with invisible disabilities, and autism is no exception. Another fun fact, autistic people are more likely to have comorbidities (other diagnoses) with things like mental health issues (bullying and teasing… anyone) and autoimmune diseases, which are tricky to catch unless you have certain markers in your blood. I heard horror stories just last night of person after person being failed by doctor after doctor, insurance company after insurance company, and it’s not just the US, but it’s particularly bad here. There are people who refuse to get diagnosed because they might get on a registry and when the next “disableds” list comes out… it’s not going to be pretty…

We’re already discriminated against by the general public. Your gut reaction might be to say no, but I found ableist views in myself thinking I was kind and empathetic to others’ plights. But becoming disabled myself… I still have yet to give myself grace to NOT do things on bad days, which is every day because I keep wanting to do more than I am capable of.

These days I’m not capable of much. I am three days into tai chi and a couple new self-care apps. One app helps me track my emotions and name them by starting with high or low positive or negative energy, then there’s a whole board you can move across and it reads a definition more into that specific emotion to differentiate it from the others. Another app I use helps me checkmark simple things like getting out of bed, taking deep breaths which I wasn’t tracking before, stretching (which I use my tai chi for), and drinking water at least five times a day. Drinking water? Yeah, I haven’t drank water except for when I was sick in years probably. And now I’ve drank water the past three days. I’ve also added a lot of Gatorade to my drinking habits which has helped a lot.

Overall, life looks quite different. I stay indoors 90% of the time. I met a friend in person for two hours. TWO HOURS. He’s undiagnosed autistic, and he talked the entire time, but I was totally okay with that! It was so much stress off of me. Otherwise it’s been errands and restaurants. Maybe an hour of TV a day, I’m trying to talk more to my husband, which is hit or miss on several days. I still feel like there’s missing ingredients to that. Talking to new people online is so much easier, and I don’t know why. It’s the same conversation a dozen different ways. I want my conversations with my husband to be heartfelt and meaningful, but I just… my energy starts out great at the beginning of the day and wanes dramatically by the end. He is the same way. I don’t know how to tell him how much I love him without it sounding cheesy or without repeating the same thing over and over.

Anyway, how has your life changed in the last three months? Has it? Why or why not?

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