a blog by an autistic adult

Category: Autism Acceptance

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.

Acceptance should happen every day, not once a year

acceptance should happen every day not once a year

I’ve struggled with what to post, if anything, for April and Autism Awareness. Feeling very burnt out and struggling lately just to do the essential things like take care of my mom and stay alive. And as I found out last year, April being autism month is rather exhausting and triggering for me with all of the arguing that seems to result from it. I have taken a break from social media and not been posting as much lately because I am having a hard time with life in general.

So I don’t have the words or energy to find the words to express anything of much value at all right now. My main thought is that what I personally need as an autistic person is acceptance and understanding every day, not once a year. My life and all I am going through right now would be much easier.

My eyes are not my ears.

I can listen to you without eye contact

I can listen to you
without eye contact.

My eyes are not my ears.

I’m kind of a superhero
like that.

In honor of autism awareness / autism acceptance month…

Here is my “autism awareness” outfit. No not really. But kind of.

my outfit

It isn’t blue or red or gold or rainbow, and it doesn’t have a puzzle piece or whatever it is we are supposed to have instead. It’s just the clothes I have been wearing for more than a week. Because I’m tired. I don’t feel like changing clothes. I am comfortable in these. I don’t care if they haven’t been washed. I have been using what little energy I have to do other things. Because that is my life sometimes, most of the time.

Other than to go outside to feed a sick squirrel, I have not left home since my last doctor appointment. I can’t remember when that was but there was snow. This is life and it is autism and it is other things, but it’s the truth because it’s my reality. It’s where I’m at right now. Now you’re aware.

I have seen so much drama in the online autism community about awareness and acceptance and everything I should be doing and not doing this month that I feel like leaving Facebook until it’s over. I have watched other autistic people be bashed about their word choices or profile pictures, or get so stressed about Autism Acceptance Month that they have taken a FB break…a break from the only place they previously felt accepted, a place where they had friends. That’s what is happening.

I am sad right now. I personally am numb to whether people accept me as a person or not. However it would be nice to see real acceptance, for actual autistic people of all ages. I have seen some posts offering ways to offer real help instead of “lighting up” profiles or being a “slacktivist”.

My suggestion to any non-autistic person is to try to see things from our point of view even just for one day. For many of us, we spend our whole lives being forced to try to fit into yours, and then being punished in various ways for not being able to do it your way. So maybe think of it like this. If you are right handed, every time you go to write something try to write with your left foot instead. And if you can’t do it, know you will be punished and ridiculed and that society will want to dedicate resources to trying to cure you or prevent you. Because everyone but you writes with their left feet. You’re the one in 60-whatever it is now. Sure your parents love you (if you’re lucky). But If you want to survive and be independent in this world, you will have to learn to be left-footed. Now imagine that your whole life revolves around being forced to learn to write with your left foot. Maybe you make some progress and people blog about how cute and inspirational you are. And maybe others want to raise awareness to prevent this whole hand-writing thing. Maybe your parents blog about how much of a burden you are when your inability to be left-footed keeps them awake all night and deprives them of a normal life, because they’re tired and need to vent… and maybe you grow up bullied and finally become a little independent but you can’t find work because everyone knows you aren’t naturally left-footed. But you try your best and just hope to survive some days. And you long for a world where people could just let you be yourself, because you don’t know how to be anyone else and you are tired. So tired that you can’t even communicate. And then people get mad at you for not using your words. That’s what life is like for many autistic people I know including myself, except it is worse in so many ways than will fit into this analogy.

I know it’s impossible to really walk in someone else’s shoes. But maybe just remember that we have shoes.

I am so grateful for the friends I have made through this page. It is sometimes the closest thing to acceptance that I have. If you are one of the people who I have seen posting about how you wish you could make a real difference for autism beyond awareness, I encourage you to get to know autistic people even if it is just through social media. Befriend them or even just listen to them and don’t assume you know more about their lives than they do. Or if you have kids teach your children respect by respecting them as people and encouraging them to accept other people as different than them but not less than them.

I hope there comes a time when we no longer have to dedicate a day or a month to raising awareness or acceptance for why we should be treating each other like human beings.

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