a blog by an autistic adult

Category: Communication

Since we’re all supposed to be raising awareness or acceptance or whatever, today I’m going to share a personal story and some rambling thoughts about communication and abuse and ableism. Yay!

I was diagnosed with a hearing loss at age 16, in 1995, when someone could finally afford to take me to an audiologist. When I was told I would probably lose more hearing and might become completely deaf at some point, I decided I wanted to learn sign language. At that time I didn’t know any Deaf people or know anything about Deaf culture except for what I had seen on Sesame Street as a kid. Learning sign language just seemed like the practical thing for me to do. I looked around and found out that a local church offered free classes. The instructor was hearing but was an adult child of Deaf parents. What I most remember about that first class was when she asked how many of us were there because we had Deaf children. One woman raised her hand. The instructor praised her over and over for learning to communicate with her child and began talking about how statistically so many parents of Deaf children don’t do that and force their kids to learn to orally communicate instead. I broke down crying and had to walk outside to compose myself because I wanted to die just thinking about that. I was so upset at the thought that parents would force their kids who can’t hear to try to verbally talk and not be willing to learn to sign to communicate with their child. I couldn’t understand why.

I thought about my elementary school years of being in speech therapy, which I was forced by the school to attend because they decided I had a speech problem but somehow didn’t pick up on the fact that my speech problem was caused by me not being able to hear properly. Speech therapy for me felt like torture and resulted in so many meltdowns that even though no one had diagnosed me as autistic, the speech therapist eventually called a meeting with my mother and the principal to discuss the fact that I was behaving like I was “emotionally disturbed” and making people uncomfortable. My mom somehow got me out of speech therapy not because she didn’t want me to be treated like that, but because she said she couldn’t afford to have to miss work for school meetings and was afraid they would end up reporting her to someone who would take me away from her.

I was diagnosed as autistic at age 30. I’m both unhappy and happy about that. In a way, I wish I had known sooner that I was autistic because maybe I would have felt less shitty about myself for the autistic things I did all my life. But also, I’ve read pages of other autistic people my age who were diagnosed as kids and were tortured with abusive therapies for years and I think nah I’m good. I don’t think I could have survived my childhood being abused any more than I already was. But being diagnosed later, I found myself sort of reliving that experience of when I took my first sign language class.

At age 30, I didn’t know anything about autistic culture and didn’t know very many autistic adults. I came online to try to make friends and felt like I was having flashbacks of my experience at age 16 when I first learned that there are parents who would rather force their kids who can’t hear to try to speak orally to fit in with society than learn to communicate with their kids in a way that their kids were capable of doing. Only it wasn’t 1995 anymore. Now there’s youtube and facebook and other places for people to record videos of their kids’ meltdowns for the whole world to see. There are also communication devices that kids like me wouldn’t have been able to afford. The one thing that hasn’t seemed to change is how much parents want their kids to try to “fit in” and function in ways that are just never going to happen or are going to be super traumatizing to the kids. I understand why more now than I did at age 16, but it still makes me want to cry a lot of the time.

I’ve seen a lot of parents of autistic children post things like “I’m sad that I might never hear my child say they love me” or “I was so happy when my child finally learned to talk so they could say they love me.” I can’t really put into words how upsetting that is to me. I can’t imagine how their child might feel to read that someday. It’s upsetting to me that there are still people in 2018 who don’t think other communication is just as valid as speaking.

Ableism sucks. People shouldn’t be made to feel like they’re broken because they can’t do something the way society wants them to do it. A lot of the autism awareness and acceptance things I read feel like what they’re saying is “Let’s make the world be able to better recognize that you’re broken so we can fix you faster” or “I love my children even though I think they’re broken. We’re working on fixing them every day, and it’s so hard, but I love them so much.” And the world praises the people who say these things while telling the rest of us to shut up, because we are the broken ones who couldn’t possibly understand what those parents go through to raise broken people like us. Maybe that’s not what they mean, but that’s what it sounds like. And when you grow up hearing that over and over, you’re being trained to believe it’s true. So much so that even at age 38, I’m not sure I’ll ever unlearn all the internalized ableism I’ve been taught by a society that was “only trying to help.”

Every year since I’ve been on facebook I’ve had people ask me why I don’t post more about awareness and acceptance. So here you go. I’m guessing this isn’t what most people want to read, because it doesn’t make anybody feel good, but this is all I have for today.

Why am I so angry?

Image is a woman punching a man. Text says "Why am I so angry?" "You keep punching me!"

Image is a woman punching a man. Text says “Why am I so angry?” “You keep punching me!”

Basically a regular scenario:

Someone says something.

I respond to the words they said.

They say that’s not what they meant.

Ok, but that’s what they said.

They express that obviously I am the idiot because I could not read their mind to know that instead of what they said, they meant something else.

“Ok so could you please say what you actually meant? Because I’m not psychic.”

“God, Amy, why do you have to make things so difficult?”

Then I become frustrated and give up. No matter what they meant, I don’t care anymore. If they wanted me to understand what the hell they wanted to say, they could have actually said it rather than playing mind games.

“Why are you so angry, Amy?!?!”

Why am I so angry?

Because although I try to patiently deal with this kind of nonsense everyday, no one should have to. I don’t have the energy for it.

Because despite evidence to the contrary, I am the one labeled with communication problems. I am the one labeled with being unable to socialize.

Do I lack empathy for ableist stupidity? Damn straight. I also lack patience for people who make things difficult for me, the disabled person, and then blame me and accuse me of being difficult.

People wonder why I prefer to be alone, to not deal with people. This is why. It’s exhausting, enraging, and ultimately a lot less fun than any of my hobbies.

Functioning and Communicating

Just because I can talk doesnt mean I can always communicate

Just because I can talk doesnt mean I can always communicate

I would like to talk about functioning and communicating.

People think that because I can talk and am labeled as higher functioning than, say, their nonverbal child who was diagnosed with “classic” autism, that I can always communicate and do it well.

Don’t get me wrong, I am happy I can talk and that I’ve learned sign language. I’m happy I can read and write and generally communicate well in writing.

But there are still times I struggle very hard to communicate because I can’t process information in a typical way. For example:

– If I’m in pain I can’t tell you what hurts. The pain interferes with my ability to process this information and communicate it. If you press me for information while I’m in pain, such as at the doctor office or hospital, I will become very frustrated and may melt down or hurt myself. I’m not trying to be difficult.

– If I am having a meltdown I cannot communicate. If you are there and you try to reason with me, yell at me, get near me, or touch me, I may hurt myself or you. My way of communicating this at the time is to scream at the top of my lungs or to injure myself. It’s like the logical part of my brain breaks down and I don’t even feel human while this is happening.

– If I am in a face to face interaction with you outside of my home, where there are overwhelming things like background noise or people moving around, I may shut down and not be able to communicate with you. At first I am distracted, and then I am frustrated by the distraction, and then I am reciting lines from movies in my head while biding my time until the conversation is over. At this point I may either be rambling about something that makes no sense to you or I may be completely silent.

– If I am in an otherwise stressful situation, or I am tired, or you have changed your haircut, or I can’t remember your name, or I am preoccupied thinking about the time my pet lizard died when I was 6, or I am hungry for french fries but not the kind this restaurant sells, I may not be able to communicate with you. I may have some words but they may not be the ones you want to hear.

These are just a few examples.

That is me. I’m not saying this is all autistic people.

The Internet can be deceiving I think. I probably seem like a totally functioning and awesome communicator if you read me online. But you are mostly only seeing me in writing. You are seeing the words I have thought about during times when I have the ability and energy. Maybe I’ve edited my comment 10 times, or changed it around in my head for a week. Other times I surprise myself and the words come easily. Sometimes I still don’t say what I mean, even on a good day. If you met me in person and tried to carry on a face to face conversation I’m not sure if you would recognize me.

This is me. I’m not saying this is all autistic people.

I’m writing this for a few reasons and none of them is for pity. One is so people can get to know me better. Another is so that anyone else who is like me who may think they’re alone will know it isn’t only them. But also it’s for parents, because I see so many with nonverbal kids who say they wish their kids could tell them where it hurts etc, and I understand where you’re coming from but I also know I think to myself that even if your child could talk he might still be like me.

I don’t think all people know that sometimes autistic people who are verbal can’t communicate these things either. Sometimes the kid who can use a device to communicate or who signs etc can’t communicate during a difficult time, and I see it. I see myself in that kid. I see my own autism in that kid. I see the parent who tries so hard get upset and the child who also tries so hard get more frustrated, and sometimes someone gets hurt. So I just wanted to give my perspective and hope maybe it helps someone to better understand.

This was very difficult for me to write. But I hope that in some small way it helps someone.

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