Content: This post includes internalized ableism.
A few days ago something reminded me of my old life. The life that was never mine to live, just to borrow. Back then, when I was pushing myself through university, I thought that I was just in the beginning of a great life. Like my days were some kind of prelude. I was waiting for my real life to start, and then I wouldn’t be such a mess. I wasn’t going to spend my life being so desperatly tired and confused.
Don’t get me wrong, I lived a life that I partly loved. I travelled a lot, had board positions for interesting organizations and studied. I collapsed in sensory overloads and had meltdowns a couple of times a week but I thought that I could grow out of it. Try a little bit harder and it would stop. I thought that working hard would make me a researcher and somehow I was magically going to experience a sense of stability. If I could just stop being such a weak person. If I could just stop messing up relationships.
A friend from that time contacted me the other day. He was passing through my city and had a few hours to spare and asked if I wanted to see him. I really wanted to, he was a wonderful person and when our lives took different directions I missed him a lot. We haven’t seen each other in almost ten years so I was surprised when he contacted me, but very happy. But I couldn’t meet up with him. I’m trapped in my apartment and in the evenings (which was the only time he had a few hours to spend before his next flight) I’m usually in a way too bad shape to be able to talk and my apartment needs to be quiet for my kid.
I turned him down and felt a bit sad but didn’t have that much time to think about it. Yesterday, when I actually had time to reflect, it felt like something hit me in the head and all those memories of my old life, my borrowed life, was poured over me. How did it get this bad? How did I go from travelling the world to not being able to do my own grocery shopping? How? I can’t grasp it.
The sad thing is that even though I did believe that I was going to have this interesting life that I wanted, I couldn’t really see how it was going to happen. I could never picture getting myself together. Something was intrinsically wrong with me, and I feared that I was a ticking bomb waiting to explode. However, that fear was too elusive to grasp. People told me that it was just my low self-esteem talking.
But the bomb did explode.
Recently I wrote about my experiences with Dialectical Behavior Therapy (DBT). It dawned on me yesterday that my experiences from DBT are even more complicated than I thought.
Not only did the skills I learned in DBT mask how demanding a lot of social situations are for me because I’m autistic. Another consequence from learning social skills in that kind of structured way is that I tend to assume that everybody else live by the same rules. Of course, this isn’t true.
I’ve had a fight with a family member for the last couple of days and when I tried to sort things out and tried to understand how this person was thinking, it became very obvious that we don’t understand each other at all. I apologized for that parts were I agree that what I did was wrong, but when I wanted to talk about what the other person expected and try to reflect on responsibility it didn’t go very well. In DBT we talked a lot about responsibility and reflected on how much responsibility that really is okay to take in a relationship with another adult. This is something that this person can’t even talk about.
I feel so ashamed. I’ve worked so hard to learn how to behave and not be a bad person and then it turns out that the rules I’ve incorporated aren’t as widely accepted as I thought. It’s not even possible to discuss these aspects with a lot of people, and that’s the big thing for me. This is something that I think happens easily when neurotypical perspectives are used in therapies for autistic people: The result isn’t what was intended, but nobody will take responsibility for it.
I really wish I had known I was autistic earlier, it could have saved me so much pain. I really wish I could have gotten guidance in life from other autistic people who shared my values.
(And just to be clear: I’m not claiming that DBT is only bad. For some people it can help, and parts of it helped me. I’m just reflecting on how DBT also had some really bad consequences for me.)
Here’s an interesting (and sad) thing I’ve noticed: As a parent to an autistic child, every time I openly identify with my child, people are considering me less trustworthy. Especially psychologists, doctors and teachers. It’s like I have to talk about my kid as completely different from me, distancing myself from everything autistic, in order to be somebody that people listen to. Isn’t that very a huge problem?
Before my child was formally diagnosed as autistic, I was considered a very good parent. I fought for an assessment, I started making adjustments in our home to make it a more sensory-friendly environment, I read a lot about autism and different approaches and I started using visual aids, like schedules with pictures. Teachers at preschool, my mom and other people treated me like I was some kind of hero for doing all this without any professional help.
When my child was diagnosed a year ago, things started to change. We were offered ABA, but I refused. During this year I’ve read more and therefore I know more and I’ve found more ways of helping my kid feel better. I have deeper knowledge of autism and I know my kid better and therefore I’ve changed my mind a lot. The stereotypes I started out with (like “a person with autism isn’t capable of imagining things”) are replaced with a nuanced understanding. This is great for my kid and for me, but not for people around us.
Since I refused ABA and since I reject a lot of things that are being said about autistic people, I’m losing a lot of allies. Other parents to autistic kids don’t like me anymore and psychologists, teachers and doctors treat me like I don’t know much at all or like I’m just a very nervous mom projecting my own anxiety on my kid.
The biggest no-no is when I openly identify with my kid, as I wrote in the beginning. When I phrase thing like “for those of us who are very sensitive to noises, it’s painful being exposed to a group of people talking loudly”, I lose the last bit of credibility I had left. (Not that I’m openly autistic, but I give some examples of certain things to my kid’s teachers when I’m desperate to give them a better understanding of what the world can be like for autistic people.)
This is probably a part of the dehumanizing understanding of autism that this ableist society has. It’s awful and it needs to change. Actually autistic people need to be listened to. The world needs to start talking to us, not only about us.
The other day I wrote about how I was surprised to see my mom sad when I told her that I was a bad daughter. The particular situation happened when I was a teenager but today, around 15 years later, but it turns out that I’m still a bad daughter.
My mom is upset that I didn’t attend her birthday celebration. It was organized in a way that’s not accessible too me. What’s even more confusing to me is that I wasn’t invited to it. She mentioned it briefly a few days ago when we were discussing something else. Since she had already planned it in a way that makes it impossible for me to attend, I assumed she was fine with celebrating her birthday without me. Today it turned out that she’s disappointed that I didn’t come.
I called her in the morning to wish her a happy birthday, something that was difficult since I’m so low on spoons that phone calls is really demanding. Then she told me she was sad and disappointed.
Here’s the thing: She helps me out with practical stuff with my kid sometimes, and now I don’t know if the plans we have made are still happening or if she considers the plans cancelled automatically. She didn’t say anything about it but it has happened in the past.
I want to write about power dynamics but I can hardly move my hands so that won’t happen. I’m just stuck in my bed, crying every time my kid makes a noise outside the door and feeling like a really bad person for… I don’t even understand exactly what I did wrong.
Content Warning: This includes self-hatred
A memory just hit me. I was around 16, I think, and my mom came home and up to my room. It was a weekend and earlier that day we had argued about household chores. It was a really bad fight with yelling (at least from my side) and it ended with my mom leaving the house. She went our to the grey, cold November day to get some space.
When she came home and sat down on my bed she had bought me a present. I was surprised by that, considering that I had lost my temper. When she handed me the present she started crying and told me that she was really sad that I felt like I was a bad daughter. It was true that I had yelled that I was a bad daughter who couldn’t do everything she expected me to do, but I was almost chocked by her reaction from it. Was this a surprise to her? It certainly seemed like that.
To me, there was not much of an option. Of course I was bad. At that time, I never did what my parents asked me to. Not because I liked always being obstructive, but meeting their demands was simply not possible. I couldn’t handle school because I was too tired and dealing with all the household chores I was assigned was overwhelming. No matter how much I tried to explain that it was hard for me, my parents never believed me. “You’re such a bright girl, vacuum-cleaning can hardly be a problem to you. You’re just lazy.”
How could my mom had thought that I didn’t feel like I was a really bad daughter? Being like me obviously meant being wrong.