I saw Vaxxed with Char. We got in free. I’m glad I didn’t pay, ’cause I’d have been ticked if I had. I’m writing an open letter to Andrew Wakefield, which is…well…taking a long while.
Anyway, she posted a Facebook status about it, then came a mega-long discussion on autism. One of the things that affected me the most was the idea that, because autism is a spectrum, someone’s autism could be “worse”…therefore I, an actually autistic person, apparently lack the ability to defend autistics everywhere, imply how we’re all equal, and constantly stress identity-first language and the abandonment of various ableist (functioning) terms.
This hurts. It’s not the first time I’ve been told my autism is not the “bad autism”, and I can’t help wondering: where is the line drawn?[1. I don’t think I’m better than your child or that your child is better than me. Why do you feel this way?]
As if I need to prove myself to anyone, I took some quizzes. Mind you, I am diagnosed.
- Psych Central: 42 [31 & up is considered “autism likely”]
- WIRED’s AQ Test: 42 [I skipped #48 (about being a good diplomat), because I didn’t understand the definition; those who score 32 or high typically meet diagnostic criteria.]
- Aspie Quiz: 176/200 Neurodiverse vs. 14/200 Neurotypical (PDF) [Feel free to compare current score to that of the one from May 2014.]
Now that I’ve wasted two hours of my life, it’s worth noting these aren’t irrelevant—in 2014, my [now-former] therapist printed off about five quizzes for me to fill out, which she then analyzed upon my completion. On message boards, other autistics have mentioned their doctors had them fill out the quizzes as well, since they’re [basically] the same questions they’d have asked, anyway.
Also, because we now have this out of the way, I can get on with this.
I feel like I’ve failed as a self-advocating autistic
Another thing I’d like to make clear: I did not set out to be a self-advocating autistic, it just happened. I believe in God and that he has a plan for everyone, so…I blame[2. Mind you, I believe God has a sense of humor, so when I say “blame”, I don’t mean it in a hateful way, but in a sarcastic, yes-God-that-is-exactly-what-I-want-as-an-autistic-person, even-though-it-opens-me-up-to-extreme-ridicule, I-will-do-it-for-you-if-you-guide-me-along-the-way way. Because it’s HARD to be openly autistic, I see it as a blessing/gift from God, and something I can’t do on my own.] him for the reason why, every time I want so much to back away from this because of all the stigma and hurt, I find myself thinking of more things to talk about—things that really need to be said.
Secondly, I aim to be the person I needed/wished I had when I was younger. My goal with this is literally to make the world a better place for all autistics. My heart breaks when I learn yet another parent has killed their autistic child to “end their misery”. I cry for days. I want so much to help change the world and make it better, but I have no clue how to do that. Meanwhile, said parent is being comforted by the allistic community.
I want to hate the person, but…I can’t. I hurt for their child(ren) and hope they’re in a place much better than this Earth could ever provide for them, because I start to fear the world will just get worse for us. I don’t understand why the parent couldn’t love their child; I don’t understand how parents could hate their children so much they wished them dead. I don’t process the death of an autistic child well. I become so frustrated I just cry, because I don’t know how to handle it and can’t properly articulate my feelings about it.
We need more voices, but sometimes I fear my voice is not the right one—because what place do I have? Do I even have one? People are telling me I’m not “that autistic”, and…well…I don’t believe I have to prove myself to anyone, but then it just takes one person to make me feel like I do have to prove myself—as I’ve felt my entire life.
I start to feel like I’m a bad self-advocating autistic because why would an allistic person listen to me? I’m exhausted. I’m tired of fighting, but feel that if I stop fighting, it will send the wrong message. To quote Charlise, “If an autistic person won’t stand up for autistic people when they are hurt or offended, who will?”
But I can’t always contribute to everything. I know my limits. I have accepted them. I know of other autistic bloggers who are better-equipped at handling this than I am, or at least have more experience. I have to back away from the things that bury me down so much that I wonder why life is worth living—not because of my autism, but because each time I speak out against the hate we face, I am reminded just how much people hate us. And the more I speak out, the more I’m pushed down and told I couldn’t possibly get it.
Because I’ve apparently never had meltdowns, banged my head—you know, the stuff one only sees at first glance (not).
The case of the spectrum and functioning levels
Autism is a spectrum, but too often, allistic people feel it means something totally different from what it does.
I am deemed “high-functioning”, or not as “having” “bad autism”, because I have a blog, graduated high school—you know what? The reasons don’t matter.
We are like you’re kids. We’re working towards similar goals. We want to make the world a more inclusive place.
In trying to properly articulate what I want to say about this subject, I always fail. The goal, for me, is always relate it to a means of love. How, if you’re constantly degrading an autistic person, can you still be loving and kind? I don’t understand it. Because for me, love is nothing in relation to hate—thus constantly participating in the kind of language used to justify the murdering of autistic kids couldn’t possibly include love.
Where I’ll go from here in terms of self-advocacy
I don’t know. This will likely be my last post on it for a while, maybe [save the open letter]. This situation feels too much like a previous romantic relationship: S kept getting upset with me because I didn’t know what was expected of me. Where I gained adequate interaction in intellectual conversation, S wanted more physical things—things I’m not really interested in. When I’d finally think things were going good and had worked up enough tolerance to be able to handle physical interaction for at least ten minutes or so (e.g. hand-holding, at the least), I’d be yelled at right before about how I was a bad, selfish girlfriend.
That’s what this feels like. I feel like I’ve been fooling myself into thinking I’ve been doing well, and I can’t handle the emotional feedback blogging about my autism requires, so…I can’t do it right now.
This is how autistic I am
Taking a page from Mike’s
book blog[3. He has a book, heh.], here’s a miniature bio regarding my autistic self:
My name is Liz; it comes from my middle name. I use “autistic” because I prefer to be inclusive of the autistic community rather than separate us into various categories.
In elementary school, I often had “Detention”, because the teachers were tired of stopping other kids from bullying me and didn’t know how else to keep me safe. I was allowed to color, and a teacher specialized in maths let me work extra maths worksheets she had. One year, I went to a school that had a special program for certain students (we called ourselves “the weird ones”, as we realised only the “weird” kids had had to go to Group), which we came to know as “Group”. As fifth graders, we went on a field trip to the middle school that was like a simulation of sorts, to help us become familiar with the surroundings.
In middle school, I was often sent to “Content Mastery”, also referred to as “CM”, because I frequently fell behind in certain departments, could not work well in a group, and/or had difficulties following the instructions/lessons/etc.
My best friend in middle school told me I needed to have plastic surgery done on my nose as soon as I could; I saw nothing wrong with it at the time.
When my special interest was author Lois Duncan, I read all her novels within two months by checking one out at a time from Mrs. Reimer’s personal library. I have never understood how to find books in a library and still don’t; people have always had to help me.
In ninth grade, I was asked if I’ve ever ridden a cow. I said, “When I was a kid, I sat on a calf for a picture, but I only really ride horses, if anything.” My two classmates laughed at me. I later learned this was a euphemism for something else.
The speech that led to me being elected Assistant Treasurer of the Girls’ Awareness Program my senior year: “I have a lot of time to do stuff. I am on the newspaper team. I have a dog and two cats at home. I already spend a lot of time in Mrs. Vela’s classroom, because that is where I have lunch, unless she has a sub. I really love cats.” I was the only one who ran for the position, so.~
I can give you a list of one hundred reasons why I cannot give a speech in five minutes. Don’t think/assume I haven’t went through hoops to avoid presenting anything in class. Other times, I’d literally lose my voice. I couldn’t speak, or maybe the words were there, but I couldn’t figure out how to say them—or maybe there were no words at all. I could communicate nevertheless, though; in my remedial maths class junior year, the teacher and I developed a sort of sign language so I could still gain points for participation. Whilst we’re talking about remedial classes: I also took a remedial reading class. Reading comprehension and I don’t do well; I tend to read blog posts more than once—and yet I still may not fully comprehend the point. Pair this with verbal communication, and you have what I consider Hell to be like.
I called it “losing” my voice, because that’s what others had call called it. I didn’t learn it was a nonverbal tendency until recently.
To quote Mike (Shaping Clay):
“I can talk for extended periods, but the more tired I get, the more my speech impediment slips out. It starts as a stutter, then I go tonally flat, and eventually I lose control over my enunciation and start to sound like the stereotypical autistic. Usually I also get frustrated and have a hard time keeping myself from shouting when this happens, because I stop being able to say the words I intend to say, and instead I insert similar-sounding but incorrect words, like saying ‘speak’ when I mean ‘steep’. When it gets really bad, I will be able to see the word in my mind’s eye, as if I was silently reading, but I will not know how to say it out loud.”
I’ve not cut since 2014. I wear a black rubber band on my right wrist 1) because I am fascinated with feeling something in that area, but dislike jewelry, so it’s the perfect weight, and 2) so I can have it there as a coping mechanism when I lack something else.
When I was a child, I had real pacifiers and baby bottles for my dolls. However, because I craved that sort of sensory input, I’d suck on them myself. My mom, fed up with it, eventually took them away from me. I started biting my arms, hands, knees, fingers, fingernails and lips, because I crave biting something. I also have chewed to pieces the cords of my earphones and my plastic water bottle caps, to the point that I can feel (and taste) the wires and bits of plastic, respectively. Gum and food have flavor, and I need something without flavor and other limits. I will be buying a stim toy made for this need soon, now that I know it exists, because as a last resort/when I can’t do the other things, I grind my teeth.
I make some money right now doing various freelance work, but it’s not easy to land freelance work because of the communication gap.
I rely heavily on scripts. I like to know as much about a situation as possible. I do not favor surprises.
Whilst I have a blog, I’m a private person. I don’t understand boasting about one’s job. I don’t understand the point of proving people wrong. I don’t understand why talking about a significant other is so important. I don’t understand a lot of things people have no issue sharing, but really don’t understand the things they have issues disclosing.
When it storms heavily, I am scared. I love the sound of rain and thunder, but it also scares me because of how loud and heavy and dangerous it can sound.
I’ve had 25 years to try to figure out how to suppress certain things allistics find weird. I went to several doctors’ offices as a kid wherein I was attempted to be “treated”. I’ve been wronged by doctors who don’t know how to work with autistic people. This non-autistic-seeming robot persona you see on me? Well, who we are and what we do to survive are two different things (CW’s The 100).
I study characters’ behaviors and actions in movies, TV series, the news, commercials—all the things! I’m great at dance, because I can easily mimic someone else…see where I’m going with this? I’m mimicking what I see! I practice various emotions by mimicking GIFs. It took me forever to learn how to wink because eye contact is the weirdest thing ever.
I’m pretending. It’s an act. I’m great at it, apparently.
I always struggle with tying my shoes, so I either rarely, if ever, untie my shoes, or I wear ones that don’t require tying—Velcro, anyone?!
I may not seem like I fit the stereotypical definition of autism or be exactly like your child, but I’ve had 25 years to figure this out. I’m still figuring it out. I leave my door closed because I’m terrified letting anyone see a glimmer of the parts of me that make people say, “Yep! You’re autistic!” will result in the same horrendous consequences I’ve endured before. In here, I rock and sway in my desk chair, I constantly bounce my knee, I roll my shoulder.
There is so much you don’t see when you meet someone.
Nearing 2,400 words, I’m done ‘splaining myself.
However, whilst we’re speaking of 4s, can we relish in how amazing “r” sounds are, especially when in words like “four” and/or “for”?
Edit: I found random typos/wrong used being used/etc. and had to edit things accordingly. Instead of 2,436 words, this post now has 2,511 words.
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I feel you in all of this. I’ve been a closet autistic all of my life. And beginning to wonder if withholding this information from people has actually done more harm than good. I wonder if my friends knew I was autistic, would they constantly treat me like a fragile egg, or be more lenient if i do something that’s slightly socially abnormal…? I ask myself this question every day.
There are definitely downsides to coming out as autistic.
For example, I commented on my my high school best friend’s post about having a service animal trained for myself in the future (she trains service animals and is studying to become a vet, so it was/is kinda part of her degree or something), because I’ve read they can help PTSD patients and autistics, as well as people who don’t hear well. Her response, which asked about me instead getting treatment for an “autism cure”, broke my heart. We’ve changed so much I’m now the open-minded person she was in high school, and she’s more like the closed-minded person I was in high school—at least that’s the way it seems.
Then there are the people who will look at you and wonder why you “think” you’re autistic—my personal favorite—for whatever reason they think you couldn’t possibly be such. It’s weird, methinks, because after some of those people really spend time getting to know me and educating themselves about autism by reading things by actually autistic people, that “some” wonders how they ever could have thought I wasn’t autistic. But I think it might be more that allistic people tend to make a lot of assumptions and “read between the lines”, and autistics—from what I can tell—don’t read between the lines and do more of seeing things for what they actually are…because they do language literally? So I’ve concluded on my own that allistics don’t consider the things they don’t see about a person, because they’re not as perceptive. Maybe they see the messy room and think, “Oh, she’s just too lazy to clean it,” or maybe they never see the messy room, but they also don’t question it because they just think, “Oh, yeah, it’s just a room; why would it be a mess? She’s so meticulous and likes things a particular way—her room could never be messy!” or, lastly, maybe they see the room that was cleaned a few days ago and assume it always looks like that, even though that is literally the only time they see it.
Or maybe they’ve just been educated wrongly, and that’s the problem that is causing all the sub-issues.
But then there are the people who treat me like a fragile egg, and even those who say, “We’re all walking on eggshells around you,” and they’re the ones who make me wish I’d never, ever come out as autistic, because they seem to have this idea that knowing someone—anyone—is a right, and it’s not. They get upset too often because they want to get to know me, then when I open up, they shut me up—or when I ask what I can do to help them get to know me and understand me more, they act like/treat me as though I’m a rebellious teenager acting out…and they all talk about me behind my back, “worrying” about me because I “won’t” grow up and “don’t seem to want” to grow up, and it hurts…and I just stop trying. Trying takes too much effort, and I’d rather use that energy elsewhere.
The people with whom I am upfront to right off the bat, who stick around thereafter, are actually perceptive to learning more about what autism is really like. There are also blog friends, most of which have actually been really accepting. These days, I’d rather be like, “I’m autistic. If you dislike it, GTFO,” than let them think I’m anything but autistic, just because, whilst some days I want nothing more than to be in the autistic closet, I don’t actually want to live in it again.
I guess…these are the things to consider. It depends on what your friends are like and how they view autism.
“I always struggle with tying my shoes, so I either rarely, if ever, untie my shoes, or I wear ones that don’t require tying—Velcro, anyone?!”
Elastic laces! I bought some elastic laces for my sneakers and now they’re basically slip-ons. I’ve been wearing them for nearly a year and have only retied them once (because I noticed my bow was lopsided.) I recommend trying them out if you’ve got any pretty lace-ups that you just can’t wear. 🙂
Sorry to focus on that one detail, but I had no idea elastic laces existed until a year ago and I want to share the magic.
As an allistic reader who hasn’t spent much time educating myself about autism, this post was very interesting to me. Thank you for being so honest and forthcoming about your experiences. (I got here from the Exposure forums, btw.)
Oh, elastic laces seem nice and cool! I’ll have to try them one day. 🙂