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.

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.

Dear Autism Professionals, Please Stop Harming Us

Dear world,

Dear social workers, psychologists, teachers, doctors, principals, and all the other people that I sometimes have to interact with as a parent of an autistic kid,

Please stop making our lives a living hell.

I’ve written several posts about how Autism Parents are making autistic people’s lives hell recently, but it’s time to address what I think is one of the root causes of the Autism Parent ableism: You, the autism professionals who are very ableist and also exercise more power than you seem to understand.

No, I don’t mean all autism professionals, because some of you aren’t ableist. However, I refer to the vast majority of all the professionals I come across who are supposed to make my kid’s life better but somehow manage to do the opposite.

I mean you, if you are a principal who refuses to give my kid the support and accommodations that he needs and is legally entitled to, and instead blame my kid for avoiding demands.

I mean you, the spec ed teacher who thinks that I give my kid too much AAC, because you don’t understand that AAC is a way of communicating that reduces my kid’s stress level.

I mean you, the doctor who told my kid that he’s too used to getting what he wants when he told his dad that he didn’t want to be in your office because you had avoided to give us information about why he had to see you.

I mean you, the psychologist who tried to convince me that I should make my kid “practise” being around noises he couldn’t handle.

I mean all of you who believe in myths about autism. All of you who are treating autistic people like we weren’t real humans with feelings. I mean those of you who thinks that autism is just a lack of motivation and therefore we just need to be pushed and pressured with threats and gummy bears.

I mean those of you who don’t pay attention to what autistic people are trying to tell you.

Please stop. It doesn’t matter how admirable your intentions are, if you aren’t listening to autistic people, reading what we are writing, looking at us signing or looking at the pictures we use, you are harming us because you will have gotten it all wrong.

Autism Professionals Hijacking My Thoughts

As a parent to an autistic kid, I read a lot about different strategies to make the world more accessible to my kid. About different ways of meeting sensory needs, create predictability and giving my kid the best possible opportunity to understand the world. To relieve stress and create recovery time. As much as possible, I read about autistic people’s experiences, needs and ways of meeting those needs, but sometimes I read something from an autism professional who isn’t autistic, or isn’t writing from an autistic point of view. And I hate it.

Not because all of it is totally bad, but because most of the times, the values permeating it are horrible. Besides from not working the way these NT autism professionals think their tools and strategies work, there’s very often an idea that the less autistic the person appear, the more they can claim success. As an autistic person myself, it hurts me badly when I have to be confronted again and again with their notions of being autistic as something bad. No matter how much they claim that they aren’t trying to cure autistic people, the idea that support or help should be something that makes autistic people seem as little autistic as possible is taken so for granted that they don’t need to spell it out. In many cases, they claim the opposite but then when they explain how their strategies and tools help, success is measured in the person appearing less autistic.

Not only is this a waste of my energy because it won’t help my kid, but it’s also a huge problem because it’s affecting my thoughts and feelings about myself. Their often incorrect ideas about autism are hijacking my thoughts and it makes it more difficult for me to understand myself and my kid.

For instance, let’s take this idea that autistic people need a huge amount of external, totally illogically constructed motivation to be able to learn something. Even when I look at tools and strategies that aren’t obviously based on this, I can sense that this notion is somewhere deep beyond what’s being claimed straightforward. No matter how much I know that this isn’t true, I get affected by it. Whenever something is too difficult for me, I start wondering if I’m actually just not motivated enough. I know that this isn’t true but having to see some misunderstandings about autism being reproduced over and over affects me. It hijacks my thoughts.

This is why I think that autism professionals (autistic or not) need to start paying way more attention to what autistic people are trying to communicate, and scrutinize your own values and understandings of autism. It’s not enough to stop doing ABA, in order to create a better world for autistic people autism professionals need to stop reproducing misunderstandings and negative values about autism.