How to use visual schedules to prevent accidental gaslighting

Content: This post mentionens ABA briefly and gives a detailed example of an autistic kid being exposed to gaslighting.

 

 

As I’ve mentioned in several previous posts, I’m an autistic parent to an autistic child. I just tweeted a bit about my take on autistic parenting and that made me think about that I want to explain one of the benefits of using visual support for clarifying life and create predictability.

Visual support like picture schedules can be used in a number of ways. Sometimes people use this in ABA settings to visualize what reward the child will receive and I want to be clear that I don’t do that. I don’t do any kind of ABA or therapy that attempts to make my kid appear allistic. In my home, we use pictures and visual support to make life easier for us, as the autistic people we are. Nowadays, both my kid and I are mostly verbal but visual support is still a great way to communicate for us, for a number of reasons. One of the benefits of pictures, words written down and color coding is that this is the kind of information that lingers, meaning even for people like us who don’t always remember what we were thinking about a second ago (hey ADHD), the information is more accessible. Another benefit is that clear, visualized planning can prevent (unintentional) gaslighting and misunderstandings.

Now, some of you may think that since gaslighting is a horrible thing, it’s not something that happens accidentally. I wish that was true, because yes, making someone doubt themselves and their experience of reality is a truly horrible thing to do. In my experience though, adults sometimes do gaslight kids without even realizing it. Especially autistic kids. Especially if parents operate with an allistic perspective. It can go something like this:

An autistic child is being told by a parent that “tomorrow, we’re going to the beach if the weather is good”. If the weather is bad they will stay at home and play computer games. In the mind of the parent, this plan means that they will go to the beach if it’s warm and sunny. This condition doesn’t have to be a problem, but let’s say that the parent doesn’t tell the kid about what they mean with “good weather”. Let’s say that the kid doesn’t even like sunshine because the heat is sensory hell, but loves playing on the beach on a cloudy day. The next day when they wake up, it’s cloudy and not that warm. The kid is happy, because the weather is perfect for the beach. The parent however, doesn’t want to go to the beach because it isn’t warm enough. Maybe they will disagree and fight about it. Maybe, the parent will say something like “But I told you we’re only going if the weather is nice! Why don’t you ever listen?”

A lot of people will probably agree with me that this is a misunderstanding. However, if you’re an autistic kid your sensory experiences, your interpretations of the world and what people say are likely to always be questioned, erased and invalidated and then you are being blamed for it. It probably doesn’t happen only once a year, it might happen every day. Because that’s life for a lot of autistic people in an allisticly run world. For kids, this is even worse than for adults because kids’ interpretations are often considered invalid just for coming from a kid. Having your interpretations of the world constantly invalidated day after day, year after year is a kind of gaslighting. It might not be intentional but it’s more harmful than just misunderstandings between equals.

So how does visual support help us in this?

Black and white pictures of a sun followed by an arrow pointing at a symbol for beach and a picture of clouds followed by an arrow pointing at the symbol of computer games. Images from Sclera symbols.

Let’s say that the parent and kid in our example had made a picture schedule about this. For some people, it becomes much easier to understand an autistic way of thinking when you communicate using pictures, meaning that just putting what you want to say in pictures might close a communication gap between the parent and the kid. But even if that doesn’t happen automatically, when the parent and kid created the schedule together, the question of what “good weather” is would hopefully had come up. Many of the parents I discuss visual support with mention this, that putting your thoughts into pictures makes it more necessary to be precise and see possible interpretations beyond your own. When visualizing plans together, it can become easier to understand each other.

Hopefully, by making visualizations and realizing that you have different sensory experiences from sun and heat and therefore interpret “good weather” differently, you avoid misunderstandings and gaslighting.

Black and white pictures of a sun followed by an arrow pointing at a symbol for computer games and clouds followed by an arrow pointing at the symbol beach. Images from Sclera symbols.

Now, would it be enough to visualize during what weather a visit to the beach could happen? No. If a kid experiences sensory hell from sunshine and heat, the issue won’t be solved just because there’s predictability from a picture schedule. Obviously the parent has to change their idea of what kind of weather that is beach appropriate to not put their kid in sensory hell. Creating predictability by using visual support isn’t some kind of magic, it’s only one part of parenting an autistic kid in a respectful way.

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Premature publishing

I accidently published a post that I’m not finished with. It doesn’t make sense because it’s missing a crucial part, so please ignore it if you read it.

(Hint: It’s lacking a part about not putting your kid through sensory hell.)

PTSD As Autistic

Content: This post mentions PTSD, trauma and anxiety but without any details.

 

I’m re-reading Melanie Yergeau’s Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind and one of the things that hits me hard is that I’m not wrong when I think that it’s very difficult to get help with anxiety and trauma from a psychologist when you’re autistic. It’s a while ago since I read this essay the last time and I’m not done with re-reading it but as far as I can remember, this isn’t something that Yergeau is literally writing. So what does Yergeau’s essay have to do with this thought?

I have (complex) PTSD and it affects me, some days more than others. I’m not trying to get any help for it and that’s partly because my neurological disease is so bad that it isn’t possible for me to go through therapy without making it even worse. The other reason for not even trying to get professional help is that I’ve been through therapy before and one of the things I’ve learned is that a lot of psychologists and therapists are misinformed about autism and therefore they don’t understand autistic people. No matter how great their intentions are, not understanding autism can lead to harm.

Just a few days ago I wrote about how therapy put me in a situation where the efforts to normalize me meant that I got even less understanding of myself and when I read Yergeau’s essay I get a part of the answer: According to a lot of allistic Autism Professionals, a mind like mine doesn’t exist. By constructing us as something else than humans, the idea that scientists and other autism professionals should pay attention to what autistic people communicate is erased. Why listen to us when we lack the ability to understand what real humans should understand? Obviously, this leads to a lot of misunderstanding of how autistic people are thinking, experiencing and interpreting the world. This misinformation means that among most psychologists and therapists, it’s not even theoretically possible to have a mind like mine. To think and process information like I do. Then they can’t help me.

I hope that what I just wrote isn’t true and that I at some point can find someone who can help me with my PTSD. But at the moment there isn’t any help for me and I’m trying to accept that in order to protect myself from being even more harmed.

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.

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.