As Long As It’s Controversial to Treat Autistic Kids with Respect, We Need Autism Acceptance and Appreciation

April is coming up and that means a lot more attention on autism, since April 2 is World Autism Awareness Day. I was thinking about the difference between awareness and acceptance and decided to share an example of why we need acceptance. Warning: This post will include mentioning of harm and ABA.

 

If you are a parent to an autistic kid, try treating your autistic kid with basic respect and tell people about it. Simple things like don’t put your autistic kid(s) through sensory hell, help them communicate by giving them access to AAC, assume competence, protect them from harm and that sort of stuff. Nothing fancy, just basic parenting. Then, wait for the reactions. For me, doing this leads to two kinds of reactions:

1) Some people call me a horrible parent, because how will my kid ever have a chance to learn to appear more “normal” when I don’t engage in interventions with that aim?

2) Some people think it’s great and that I’m a great parent.

Reaction number one is awful for a number of reasons, the main one being that it shows how so many people think that interventions aiming at trying to make your kid appear less autistic is an acceptable and reasonable thing to do. That’s horrible because it means that a lot of kids are being put through ABA and similar interventions that have harmed so many autistic people. Reaction number two is quite nice, because it means that there are people who think that autistic children should be brought up with respect and basic protection from parents and other adults. However, no matter how happy reaction number two makes me, something is very troublesome with both these reactions – the fact that there is a total lack of a third kind of reaction:

3) So you’re a parent who commits to basic parenting. What’s special about that?

I’m thinking about this because I’m thinking about how to deal with April and all the Autism Awareness, because I think this is a great example of why we need Autism Acceptance and Appreciation, not Awareness. Ponder this:

 

It’s controversial to treat you autistic kid with respect.

It’s controversial to protect your autistic kid from harm and teach them that they are fine, just like they are.

It’s controversial to point out their humanity.

 

I can’t see how Autism Awareness ever will be a solution to this. People are aware that autism exists, but it isn’t stopping anybody from thinking that parenting autistic kids should be about harming them with normalizing interventions. Autism Awareness is obviously not preventing schools from denying kids an education and punishing them for being autistic either. Being aware of that autism exists doesn’t seem to be doing much for autistic people.

However, Autism Acceptance has a much better chance of focusing on accepting autistic people, just as we are. Autism Appreciation has a chance to give us the right to feel good about ourselves, as the autistic people we are. With more acceptance and appreciation, maybe one day it won’t be controversial to be respectful to autistic people of all ages anymore.

 


This post is based on this twitter thread.

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Between Two Worlds

Grieving is a paradox. On one hand I feel numb, like I’m stuck in gray vacuum. On the other hand I’m overflowing with some kind of emotion. Maybe it’s sadness, maybe it’s something else in this as well as the the sorrow.

When I think about it, I guess there’s a bit of shame in this. I’m ashamed because the autistic world and the allistic world aren’t great at working together and I’m stuck in between them, blamed, ridiculed and belittled for my efforts to translate and convert logics between these worlds. For some reason, it’s always up to the people from the autistic world to explain and prove our needs to the allistic world and when I have explained myself into exhaustion, the allistic world usually doesn’t appreciate my efforts. I try to explain, illustrate and point at sources just to be told that my needs are just as unreasonable as my kid’s needs. They won’t be accommodated because of some made up policy that makes no sense at all more than that it fits allistic people.

I know that it isn’t my fault, but the shame is still deep and burning. The sadness of being denied accessibility isn’t only for all the practical problems it causes – it’s just as much about the message that refusal of accessibility sends me. The message that says that I’m not worthy the access to healthcare or that my kid isn’t worthy of access to education. That we’re asking for something unreasonable when we’re asking for the same things as abled people. Like we’re not real people.

It seems like the grieving hits me like a tornado every time I’m told that accessibility won’t be created for me or my kid. Every time I’ve had a long email conversation, filled with efforts to make the receiver understand my or my kid’s needs, and finally get a clear answer instead of the endless BS of circling around my question, it hits me with a pain I thought I would get used to. But I’m not getting used to it. My skin isn’t getting thicker for every time it happens, instead I break more and more and just fall deeper and deeper inte the burning shame.

Because I’m not a real person in the abled world’s eyes, and neither is my kid. I can’t even carry my own pain, and knowing that my kid will go through this is too much. I can’t handle this.

Love with an Autistic Dimension

My mind is occupied with love. Love and autism.

I’ve experienced romantic love a couple of times, and I’ve had plenty of experiences of sexual desire. I’ve had romantic crushes that have faded, flings that turned into friendships, friendships that evolved into romantic relationships and so many other kinds of relationships where the experience of love has changed over time. At the moment, I love a couple of people, all in unique ways. My thoughts are often occupied with how difficult I find it to trust people and let them in, but when I think about it like this I can see how much warm feeling for other people I have at the moment and have had in the past and that makes me happy. Love isn’t one single, monolithic feeling or experience. Rather, love is multiplicity.

One of the people that I’ve been (or maybe still am) deeply, romantically in love with stands out in ways that I don’t know how to describe. I just wrote that all my experiences of romantic love have been unique to me and they have, but this one is different because not only did my love for her feel different than for all other people. My feelings for her had (have?) a whole separate dimension. Honestly, it’s not a perfect way to describe it, but I’m lacking words and that’s not only because I’m writing in a language that doesn’t feel fluent to me. What I felt (feel) for her was something so…special, rare, different, unique… no words are really fit here… that I don’t have any words in any language. Despite that, I have a strong urge to write about it. It doesn’t make sense. Or maybe that’s exactly what it does.

When I think about my time with her, Liz, I feel like I’m totally falling. It was like I was standing at a mountain and when I was with her, a separate world opened and we fell straight into it. Considering that the expression “falling in love is” exists in several languages, I suspect that I’m not the only one who have experienced the falling feeling. Tomber à l’amour, falling in love. However, what was special with my feelings for Liz wasn’t the falling feeling, but that new dimension of intimacy.

It was like we fell straight into a world where our words and actions had a meaning that only we understood. Like the words I had been saying, writing, hearing and reading all of my life had only been making some kind of sense, because my undiscovered autistic self had always lived with such a chaos and confusion. When other people talked about how they, and as they assumed even I, experienced the world, it only fit to some degree. I had been trying to be that person that other people told me that I was, a real person that experienced sensations like real people should, and felt feelings like real people should. It had never fit, and all my words had always been scraping and rubbing my mind instead of fitting smoothly. And then I fell deeply in love with Liz and we talked about experiencing other people’s feelings, about not being able to shield ourselves and about wanting so desperately to be close to other people while easily being overwhelmed and needing space and quiet time.

I was shaken to the ground. I was so used to hiding everything that was me, so used to be an unrelatable freak that had to exhaust myself in my efforts to be like (what I thought was) a real person. With her, I lost everything that I had to defend myself. I showed myself to her and it scared me to the bone.

This happened several years ago, before I had understood that I am autistic. Up until recently, I never understood why I was so shaken by this experience. Now I think I finally know why.

Ramblings from a crisis

TW: Suicide, death, ableism, school

 

I’m thinking a lot about death these days. One moment I’m scared that my heart and the rest of my body is failing me, then suddenly I fee like this life can’t be ended fast enough and maybe I’ll have to end it myself.

I can’t end  my life, because I have to save my kid. But I can’t do much for my kid, I’m trying but it’s not enough.

I feel like I’m a burden to my partner, because my partner needs to focus on finding a school that won’t harm my autistic kid.

Sorry, this isn’t much of a post. This is just a bunch of desperate thoughts, because I can’t take this hell for much longer and no matter how hard we try, it’s not enough. Being an autistic kid who learns easily but are harmed from an allistic culture means there are no accessible schools.

As usual, I really don’t want any advice. If you comment or email me telling me what to do I’ll block you. I’m not writing this because I think anybody can solve anything for me, I’m writing this because my thoughts are too heavy to stay in my head.