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.

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Chasing My Thoughts

Content: This post includes internalized ableism and a mentioning of eating disorders and depressions.

 

 

There’s something I’ve been thinking about a lot during the last couple of years, ever since I first dared to get close to the thought that I’m autistic. It’s very difficult to explain and there’s a lot in this that I still don’t understand, but I’m starting to understand pieces. It’s about finding, seeing and understanding my own thoughts as an autistic person.

Growing  up as an undiagnosed autistic in a context with several autistic relatives and several very allistic relatives, but nobody who talked about autism, meant a great deal of confusion for me. Most of the relatives that I’m today almost sure were autistic were not diagnosed or not open about it, and nobody had any words or reason to talk about how they processed information and interpreted social interactions. The differences between people were mostly described by my parents as some people were like people should be and some people were strange and wrong in some way.

My everyday experience as a kid and teenager was that there were something terribly wrong with me. I didn’t understand other people and they certainly didn’t understand me. It was like my thoughts had a pattern, or a logic, that differed from other people’s thoughts. I clashed with other people a lot and no matter how hard I tried, I couldn’t seem to catch the underlying logic of their reasoning. I was constantly looking for something that would help me see the system, find the rules and understand the world. I tried to crack the code to realness, to the understanding that would make me a real and relatable person.

I didn’t succeed, instead, I was failing to navigate. As I became a teenager I had recurring depressions and eating disorders, and later I went through therapy that became a big part of my normalizing project. I tried to understand my thoughts, feelings and reactions through the rules I was taught in therapy. It didn’t really work out, but I kept on trying. I had to do something to not be this kind of failed version of a human being and complying with the ideas I learned in therapy was the only option I thought I had.

I did learn some good things in therapy, but I also lost myself. I lost my logics and my way of thinking. Because it wasn’t enough that therapy didn’t provide me with an understanding of my way of thinking, it was also erased. According to all the therapists I met, the way I understood myself wasn’t only wrong – it didn’t exist. This erasure turned out to harm me badly, since it meant I was denied a true understanding of myself.

Today, I’m working on understanding myself as the autistic person I am. It’s slowly going forward but it’s a lot of hard work to ditch the allistic lens I’ve been taught to interpret myself through. I’m grateful for knowing that I’m autistic, but I really wish I had known earlier.

 

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.

ME/CFS Researchers Don’t Understand Autism

Content: This post includes mentioning of ABA, an autism cure and a lot of ableism.

 

 

Fellow autistic readers, I need your help.

The last couple of months, I’ve been made aware of that some researchers who are originally researching the disease ME (Myalgic Encephalomyelitis), are now interested in autism. This is very troublesome because from what I’ve read, they don’t understand autism at all and their misconceptions can turn out to harm autistic people.

A couple of days ago an article called Treating Autism and ME/CFS: Could One Drug Do Both? was published at the Open Medicine Foundation’s website, and it includes a number of troubling statements. For instance this:

ASD is not chronic fatigue syndrome (ME/CFS) but some similarities exist. Both diseases affect cognition and sensory processing, cause problems with stimuli, cause significant social withdrawal, and are associated with increased levels of oxidative stress, reduced glutathione levels, and a Th2 immune response shift.

The rest of the article goes on as expected, with a number of biomedical facts about autism and ME, but with no further definition or accurate description of what autism really is. From what I can tell, the researcher and/or the person who wrote the article both seem to consider autism a disease defined by a number of behaviors, like mutism and social withdrawl mentioned in the quote above. There’s no sign of any awareness of how heavily autistic people have criticized this understanding of autism. There’s no recognition of all the other aspects of autism, like hyper-empathy. Autism is considered a disease and therefore something bad, and demonstration of less autistic behaviors is interpreted as improvements.

The scores indicated that the children’s social interactions, language, and restricted and/or repetitive behaviors all improved.

Further on in the article, we have parents to autistic children being interviewed about how horrible they find their children’s autism. The parent perspective is of the usual tragedy kind that tends to be standard from Autism Parents, but no actually autistic person is being interviewed in the article.

This is bad. Terribly bad. I fear that the researcher’s misconception about autism and lack of awareness of that historically, attempts to “cure” autistic people have turned into so much harm and will lead to us being harmed again. There are so many testemonies out there of how ABA, the therapy that is still widely used in attempts to teach autistic people to behave less autistic, gives people PTSD. Behaving more like allistic people doesn’t make autistic people less autistic, our brains are still wired the way they are. What it does mean is that autistic people spend a horrible amount of energy trying to fit in and be approved, instead of punished.

I’m devastated by this. I’m autistic and I have ME. I want to be cured from ME but I want to continue to be autistic, because I don’t want to change my personality. For a number of reasons, I’m drained and have very little energy at the moment. I can’t fight this on my own. Those of you who want to protest, please do.