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.

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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 ACC, because you don’t understand that ACC 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 believes 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.

Gap

My relationship to my partner has been better for the last couple of months, and I’m very happy about that. We have sorted some things out and some external factors have changed and that also seems to make our everyday life easier. However, sometimes I experience some sort of gap between us. Like right in this moment.

There’s too much going on this week. Special things for my kid in school (a small concert and a theme day about human rights) that we found out about very late, meaning, we’re working our asses off to make visual material and prepare our kid. On top of that we have some healthcare stuff for me that my partner need to take me too and preparations to be done before that. My partner has done a big part of the preparation work for our kid because I haven’t been well enough today, so he’s kind of stressed out. I feel bad for not being able to do more but I also feel bad because this is the kind of situation that worries me a lot. Everything has too work smoothly according to our plan, otherwise it’s quite likely that things will be chaotic for all of us. The thing is, things never run smoothly. There will be some kind of problem that needs to be solved and I know that I don’t have the capacity to handle it, but I have to solve certain things because otherwise my kid might end up suffering.

This is not how I prefer to organize things, but this is happening mainly because my kid’s school forgot to inform us on time. Still, we have to solve this situation.

I worry. I need to just focus on dealing with my anxiety. My partner thinks that since he’s doing a lot of the preparation work with our kid, I get to rest since I’m done with most of the preparations for my doctor’s appointment. But I’m not resting. I spend my time planning exactly how to deal with every minute of Monday and Tuesday, trying to predict everything because I don’t have room to deal with any kind of demand that I’m not prepared for. In these kind of situations, I always end up over-exerting myself and that means that I also have to plan for being in a terribly bad shape until Friday.

I’m trying to focus on just getting by the rest of the day. Tomorrow, I’ll be drained of energy from just dealing with the chaos that this kind of tight schedule is causing me, and my partner won’t understand why. It will be a huge gap between us but we’ll be too busy and exhausted to sort things out.

 


As usual, I’m not writing this to get any practical advice and comments including advice won’t be published.

Open Letter To Autism Parents

This post includes mentioning of ABA, puzzle pieces and functioning lables

 

 

Dear Autism Parents,

We need to talk again. At least I want to talk to you.

Just like you, I’m a parent of an autistic kid. Yes, you probably prefer “child with autism”, but for once, let’s not focus on that. Let’s focus on autistic minds, and what your neurotypical perspectives do to all autistic people around you.

I’m a parent of an autistic kid, and I’m autistic myself. This means that every time you express how angry or sad you are about what you think that autism is doing to you, you don’t only assign blame to your child, you also tell all autistic people of all ages around you that you blame people like us. That you blame the way we react to food and noisy environments, how we process information and how we express ourselves, for causing you discomfort and pain.

You are entitled to your feelings, and so am I, and therefore I will tell you how I feel about your behavior.

Just like you many of you, I sometimes seek out other parents of autistic children in an effort to give my kid the best life i could possibly imagine. I might try to work with you to advocate for more accessible schools and healthcare, because just like you, I don’t want my kid to get PTSD just from going to school. However, I’ve realized that I’m not welcome in your world. When you talk about how autism has destroyed your life, you make it very clear that you are blaming autistic people, instead of focusing on ableist structures. What’s even worse is that you center neurotypical, allistic and ableist views and make me feel ashamed for the way I communicate. I know that you are doing this because you are suffering from knowing that your kid is suffering, but I urge you to think of this: When you are promoting ableist ideas, you are making life worse for your kid and all autistic people. It doesn’t matter how great your intentions are – when you call the need for accessibility “special needs”, when you use functioning lables and when you spread puzzle pieces and refer to autistic people as “mysteries to solve” – you dehumanize us. Dehumanization feeds ableism. We will never have an accessible society that respects autistic people as long as we are dehumanized.

But you know what? There’s another option. You have an autistic child, but you don’t have to see autism as a disaster. It’s totally possible for you to direct you anger and grief to the ableism that’s making life hell for your kid. Because you know – autism isn’t a disaster, ableism is.

I know that it’s hard. Just like you I have been fed all those ableist ideas about autism from healthcare professionals. Just like you I was told that I have to put my kid through ABA, “otherwise he could never grow up”. I’ve had doctors, nurses, psychologists and social workers telling me all those lies about how meltdowns are just a way to avoid demands, that my kid has to be taught not to stim and that putting in a lot of time on behavioral therapies is necessary if I want to give my kid any chance of ever having a good life. But the thing is, none of that is true. You have the option of looking beyond ableist ideas and start paying attention to what autistic people are trying to tell you.

If you decide to start paying attention to what autistic people are saying, you will learn that our lives have meanings. That we connect with each other, we have meaningful relationships and we are able to experience joy and happiness. You will also learn that we are harmed and hurt by an ableist world trying to normalize us, and that will probably not be a pleasant reading to you. When you read about all the violence and abuse we experience, remember that you can be a part of putting an end to it. By refusing the ableist ideas that a lot of healthcare professionals are promoting, and instead listening to autistic people to learn about autism, you can make a difference.

It’s your choice.

Sincerely

the uninspirational