No one asked, but today, I was thinking about my #ActuallyAutistic journey, such as it is.
For those who don't know, I have multiple disabilities. I've always been totally blind. Around age 11, my hearing started deteriorating. There are other things happening as well.
I have a rare condition, called Norrie Disease, often referred to as ND, somewhat ironically, because I am also very much neurodiverse, which is also ND. Autism is a thing that often coincides with Norrie Disease, and it definitely runs in my family on my mother's side to varying degrees.
When I was a kid, I often found myself relating to older people, and not well, if at all, to my theoretical peers, with a few exceptions. I obtained an amateur radio license when I was nine years old, and the majority of those I communicated with were older... sometimes, much, much older. I distinctly remember, on my first day as a licensed ham, one of my first contacts was 81 years old, and we both had a laugh over the fact that he was nine times older than me.
I found school boring. I got good grades without really trying, acted out frequently, got suspended for doing stupid stuff a few times, but still maintained some of the best grades in school over all, at least until I was in high school and pretty much gave up any pretense at caring, let my grades slip, and nearly failed the eleventh grade. Honestly, I think the only reason I past was because my Algebra II teacher threw me a curve on my grade in her class.
A perfect example was my U.S. history class, which I took as a senior. I spent all semester failing the class, but got the highest grade on the final test with all the possible extra credit, so I passed with a C anyway, pretty much dead average.
Point is, I was that polarizing kid in school that teachers either loved or hated, sometimes both.
I enjoyed taking things apart, figuring out how things worked. Sometimes, this also included relationships with other people, as well as technology. How far could I push boundaries? What could I get away with? How do certain people respond to certain things?
Naturally, this both gained me friends and got me into a lot of trouble. I suppose I've not really deviated from that, now that I think of it.
In elementary school, from Kindergarten to second grade, I was the only blind student in my particular school. Second and third grade, there was one other. We were friends for years.
When fourth grade came around, my school district merged with another, and they decided that, in order to more efficiently, at least theoretically, serve the visually impaired students, to throw all of us kids in one place, which, naturally, was conveniently not located near anyone, way out in the middle of nowhere. Yep, I had to ride the short bus, and I hated every minute of it. The stigma, the kids around me, the driver, the distance compared to my two block journey at the old school... Everything about that experience was miserable. Hell, we had to wear seat belts! Seat belts? On a school bus? "It's for your safety... so you don't hurt yourself," they said. And why would I do that? I know how to sit still on a bench seat. This is stupid!
There were some kids on my bus who had some pretty severe cognitive disabilities, and I wasn't like them. So why was this also being applied to me? I'm just blind, that's all.
I had friends at my neighborhood school, almost all of whom I would now consider ND, looking back at things, and I absolutely didn't want to leave, but such was life that I found myself in a new school with a bunch of additional blind kids.
In a way, this was good, because I had more in common, at least with some of them. In another way, it wasn't, because, quite honestly, there was less I could get away with in that environment.
This situation went on for two years, during which time I made a few more friends, which I would then lose contact with again as I switched back to my neighborhood middle school, which, again, really upset me. This is when the serious depression that has still never quite gone away hit. I had a relatively good support system, as far as my needs as a blind student were concerned, but I also was bullied frequently, being once again the only blind kid in my school for the next two years. This is also right around the time my hearing took a serious hit for the first time that didn't involve an ear infection, after my left ear started ringing in class one day, and didn't stop for a week, which left my entire left side sounding weirdly distorted for about the next five years. This eventually cleared itself up, very gradually, but things would never be the same again, and it would get worse. Still is getting worse to this day.
Also at around that time, I was prescribed Paxil by a child psychiatrist. Not only did this not help, it actively made things worse. I became suicidal. The answer was, apparently, to take more Paxil pills, because clearly, the dosage wasn't enough. This turned into a spiral of badness all on it's own.
Then, eighth grade came around, and my best (blind) friend from elementary school joined me. I could say that things got a little better after that, but not really. This was around the time I finally was allowed off the Paxil, probably because it was costing my parents a small fortune without the desired result, and they were going through bankruptcy, not that I knew this at the time.
High school happened, and I was once again the only blind kid around, which would stay the case for my remainder of school attendance.
During that point, the depression was pretty bad still, and I continuously acted out in class. Called the assistant principal an asshole to his face once, because he stopped me in the hallway for doing something stupid. That's a great way to get yourself on the short list for suspension, in case you were wondering, and apparently, I was done with internal filters.
I think, in retrospect, the only reason I made it through high school was because I had some classes that matched my interests in music and technology. I attended a magnet school for one class a day during my junior year, two classes for the first half of my senior year, then all day for the second half of that year. Along with the more interesting classes, the actual students there generally were more interesting to me.
These classes encumpassed my love for computers, and anything to do with sound and music.
There was Network Administration, where I obtained both a Microsoft MCP and a Novell NCNA. I was the first student in the state of North Carolina to do this, apparently, which got me some money, a fancy award for workforce development from the governor of North Carolina, though the governor himself couldn't attend the banquet at which this award and several others were presented, so he sent the lieutenant governor in his place, and a scholarship for any community college in the state that I never really took advantage of. Anyway, that all got me a job straight out of high school, and I thought I was hot stuff for a minute.
I also took a Visual Basic programming course, for lack of anything better to do. My brain is not wired to think like a programmer, I decided after taking this class. It didn't help that some of the assignments were actually inaccessible to me, the person writing the code, so I did snarky things, like putting labels like "obviously inaccessible button number 1," or "maybe this will actually work if you click it. I have no idea, because it's a picture. Why do you have a blind guy designing UI elements like this, anyway?"
My favorite class, by far, was electronic music production and performance, where I was a combination session player and studio maintenance guy, along with my friend Charlie, who was my age. We met via ham radio when we were both eleven. Dr. Moss was a great musician, arranger, etc. but don't get the guy near the studio gear! Charlie and I would come to the studio before classes would start sometimes, running around going "What did Dr. Moss break this time?"
I think I learned more in that class by fixing stuff than I was supposed to by actually using it.
Near the start of my twelfth grade year, I did something that warranted my suspension again, got myself sent home and all the rest. My mother took me to some sort of clinic, where I was apparently diagnosed as autistic. The fun part, though, is that no one ever told me this at the time. I visited the place a few times, didn't think about it again, until one day, when I was 25 years old, it somehow came up in conversation, and my mother said something like "Oh yeah, they diagnosed you as autistic, but I don't think that has any merit. After all, your little brother is autistic, and you don't act anything like him, so there's no possible way you could be autistic, too. So, I just never told you, because it wouldn't have changed anything."
I believe this is a case of both gaslighting and denial. Needless to say, I was pretty pissed at the time. It still makes me angry years later that such a vital piece of information was not only deliberately withheld from me, but also outright tossed aside, whether or not the diagnosis was accurate, and I now very much believe it to have been so.
Much later, this came up in conversation again, and my mother claims to have no knowledge of this. My brother can't live independently. I was having a bad day. She said something like "the choices you make are your own. Your brother can't make those decisions because of his autism, but you are not autistic, so you can."
I said "uh, actually, I am autistic, in case you forgot." Apparently, she did. This made me angry all over again.
What would I have done with that diagnosis at the time if it wasn't withheld from me? I really don't know. Even back then, when it was finally revealed, under the anger and frustration, I sort of went "well, that kind of explains a few things," and didn't really think about it again for a long time, until I started talking to a few other autists who pointed some very obvious things out to me about myself. One of you in particular, you know who you are. I'm sure you're reading this now.
So, yeah, it turns out I have been masking my entire life without realizing it, and now that I'm hyper aware of it, to the point where I have several different scripts that get loaded for various types of people and situations, where the intersections are discrete enough that I now think of myself as at least four different people, but only sometimes, not enough to be a system, I think, combined with the fact that the older I get, the less I care about societal norms, I have this odd combination of feeling the most free I've ever been, along with feeling ever more confined. It varies from minute-to-minute somedays.
As someone with a syndrome that is still not very well understood, because there just aren't a lot of case-studies, I often wonder how much Norries contributes to it, how much is just who I would have been regardless, and how much any of it matters in the first place. After all, everything that makes me who I am can't be separated from any other part of me as a distinct entity, except for when it can, which is really confusing, but it's the best way I can describe how I feel about everything right now.
I have no idea what purpose this post serves, but I'm putting it out there anyway, for what it may or may not be worth. I'm not looking for any particular thing here, just felt the need to put these thoughts into writing.
![There's a reason autistic people can experience burnout due to masking.
[Image description: Honeydew explains masking to a friend. The comic is titled "Masking Job" and is made by Theresa Scovil.
Panel 1:
A friend happily asks Honeydew "Could you explain masking to me? I want to have a better understanding."
Honeydew smiles.
Panel 2:
Honeydew says "Sure. Have you ever worked in retail?"
The friend looks confused as they say "Yeah?"
Panel 3:
Honeydew says "Masking is like being in perpetual customer service mode."
Panel 4:
Honeydew continues. "You have to modify your behaviour to placate everyone around you to avoid reprimand."
Panel 5:
Honeydew goes on. "You also have to endure when you're uncomfortable. Any respite is often frowned upon."
Panel 6:
Honeydew finishes off by saying "Masking is like being an unpaid retail worker."
The friend looks shocked as they say "Oh. Oh god."]](https://fedi.ml/photo/preview/640/626926 "There's a reason autistic people can experience burnout due to masking.
[Image description: Honeydew explains masking to a friend. The comic is titled \"Masking Job\" and is made by Theresa Scovil.
Panel 1:
A friend happily asks Honeydew \"Could you explain masking to me? I want to have a better understanding.\"
Honeydew smiles.
Panel 2:
Honeydew says \"Sure. Have you ever worked in retail?\"
The friend looks confused as they say \"Yeah?\"
Panel 3:
Honeydew says \"Masking is like being in perpetual customer service mode.\"
Panel 4:
Honeydew continues. \"You have to modify your behaviour to placate everyone around you to avoid reprimand.\"
Panel 5:
Honeydew goes on. \"You also have to endure when you're uncomfortable. Any respite is often frowned upon.\"
Panel 6:
Honeydew finishes off by saying \"Masking is like being an unpaid retail worker.\"
The friend looks shocked as they say \"Oh. Oh god.\"]")
![Dear Tasia Soleil Smallwood, Please find below a calculation of the total amount of deposit(s) required when you sign the lease agreement. The lease will not be signed or valid until all adults 19 years of age or older have signed the lease and the deposit(s) are collected. Deposit(s) ‘The deposit(s) are due at the time of lease signing. Payment must be in the form of a certified bank draft, certified bank cheque, Canada Post Money Order or Ministry of Social Development cheque. Please make payment to Redacted.
First Month’s Rent
The First Month's rent must be paid prior to obtaining the keys. This can be paid also at the time of lease signing] if you wish. This payment may be in the form of a certified bank draft, certified bank cheque, Canada Post Money Order, Ministry of Social Development cheque or a postdated personal cheque. Please make payment to Redacted.
This payment cannot be combined with the deposit cheque. It must be a separate cheque from your deposit cheque. If you have any question regarding how the deposit amount was calculated, please call our office at Redacted or email redacted.
Economic Rent on this unit as stated on Section 3 of the RTA is: $846.00 (Deposits are based on % month rent of Market Rent) Payment #1: Due at time of lease signing Suite Damage Deposit $423.00 Pet Damage Deposit n/a Payment #2: Due prior to obtaining keys First Month Rent $445.00](https://fedi.ml/photo/preview/640/593668 "Dear Tasia Soleil Smallwood, Please find below a calculation of the total amount of deposit(s) required when you sign the lease agreement. The lease will not be signed or valid until all adults 19 years of age or older have signed the lease and the deposit(s) are collected. Deposit(s) ‘The deposit(s) are due at the time of lease signing. Payment must be in the form of a certified bank draft, certified bank cheque, Canada Post Money Order or Ministry of Social Development cheque. Please make payment to Redacted.
First Month’s Rent
The First Month's rent must be paid prior to obtaining the keys. This can be paid also at the time of lease signing] if you wish. This payment may be in the form of a certified bank draft, certified bank cheque, Canada Post Money Order, Ministry of Social Development cheque or a postdated personal cheque. Please make payment to Redacted.
This payment cannot be combined with the deposit cheque. It must be a separate cheque from your deposit cheque. If you have any question regarding how the deposit amount was calculated, please call our office at Redacted or email redacted.
Economic Rent on this unit as stated on Section 3 of the RTA is: $846.00 (Deposits are based on % month rent of Market Rent) Payment #1: Due at time of lease signing Suite Damage Deposit $423.00 Pet Damage Deposit n/a Payment #2: Due prior to obtaining keys First Month Rent $445.00")
