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.

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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.

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 being kids. 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.

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.

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.

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 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.