This is reprinted from Autisticook with permission.
Autisticook is a 37 year old woman from the Netherlands who works in IT. In her spare time, she loves reading, doing renovations on her home, and playing with her cat. She objects to being called crazy cat lady but doesn't mind being called a nerd.
It was just after the first exercise in the mindfulness for autistic adults group. One of the women in the group was sitting with her head down and if you looked closely, you could see that she was crying. When the therapist asked her a question about how she’d experienced the exercise, she didn’t respond at all. It was like she wasn’t listening, wasn’t even there. She just kept rocking back and forth with tears running down her cheeks.
The therapist asked if she wanted to be left alone and that, after a slight delay, actually got a response: some vigorous nodding that seemed like an extension of the rocking, but was probably meant as a yes. The rest of the group then continued with talking about the exercise we’d just done.
When everyone else had had their say, the therapist addressed the unresponsive woman. This time she lifted her head, but she didn’t make eye contact with anyone. The therapist asked her what was the matter, and the woman started flapping her hand near her ear, looking very angry. Then she blurted out: “Words!” There was a bit of confusion at that, but the therapist asked if she was having trouble finding the right words, which made sense. The woman replied with an emphatic “Yes!”
In bits and pieces, the story came out: something about the exercise leaving her far too open to all the noises in the room, in the building, and on the street outside, not being able to self-regulate anymore, and melting down. It was obvious she was very distressed, she even used the words “so painful” to describe the sounds. At that, some of the others in the group nodded. They knew what she meant. The therapist asked if the woman wanted to leave, but she said: “Want to try”. So the therapist said we could all take a short break and that the woman could rejoin the group when she felt ready. She said she was going to go outside, and put on her coat. Someone helped her pour a cup of tea to take with her.
Only I noticed the multitude of angry red welts from where she’d been digging her nails into the back of her hand.
Dealing with a public meltdown. Dealing with the pain of sensory overload. Dealing with the stress of having other people, strangers, see you in your most vulnerable moment. Dealing with suddenly not passing anymore, and wanting to hide. Dealing, coping in the only way that’s still open to you: trying to block the pain by inflicting a different kind of pain on yourself.
Unfortunately I can imagine all too well how that feels.
The welts are still visible on my left hand as I’m typing this.
Autisticook is a 37 year old woman from the Netherlands who works in IT. In her spare time, she loves reading, doing renovations on her home, and playing with her cat. She objects to being called crazy cat lady but doesn't mind being called a nerd.
It was just after the first exercise in the mindfulness for autistic adults group. One of the women in the group was sitting with her head down and if you looked closely, you could see that she was crying. When the therapist asked her a question about how she’d experienced the exercise, she didn’t respond at all. It was like she wasn’t listening, wasn’t even there. She just kept rocking back and forth with tears running down her cheeks.
The therapist asked if she wanted to be left alone and that, after a slight delay, actually got a response: some vigorous nodding that seemed like an extension of the rocking, but was probably meant as a yes. The rest of the group then continued with talking about the exercise we’d just done.
When everyone else had had their say, the therapist addressed the unresponsive woman. This time she lifted her head, but she didn’t make eye contact with anyone. The therapist asked her what was the matter, and the woman started flapping her hand near her ear, looking very angry. Then she blurted out: “Words!” There was a bit of confusion at that, but the therapist asked if she was having trouble finding the right words, which made sense. The woman replied with an emphatic “Yes!”
In bits and pieces, the story came out: something about the exercise leaving her far too open to all the noises in the room, in the building, and on the street outside, not being able to self-regulate anymore, and melting down. It was obvious she was very distressed, she even used the words “so painful” to describe the sounds. At that, some of the others in the group nodded. They knew what she meant. The therapist asked if the woman wanted to leave, but she said: “Want to try”. So the therapist said we could all take a short break and that the woman could rejoin the group when she felt ready. She said she was going to go outside, and put on her coat. Someone helped her pour a cup of tea to take with her.
Only I noticed the multitude of angry red welts from where she’d been digging her nails into the back of her hand.
Dealing with a public meltdown. Dealing with the pain of sensory overload. Dealing with the stress of having other people, strangers, see you in your most vulnerable moment. Dealing with suddenly not passing anymore, and wanting to hide. Dealing, coping in the only way that’s still open to you: trying to block the pain by inflicting a different kind of pain on yourself.
Unfortunately I can imagine all too well how that feels.
The welts are still visible on my left hand as I’m typing this.
Thank you for sharing this painful story. This blog is helping me understand a fraction of the emotions my child may be feeling.
ReplyDeleteAutisticook, you have written this so very clearly. Much love to you! Love, Ib
ReplyDeleteI know that pain too.
ReplyDeleteRight now I'm responding to this post on a different level: Curiosity, because this is a little similar to how I responded when first trying mindfulness-like things. When the yoga instructor saw me crying, she said that that's a fairly common response. Is it particularly common for Autistics to become strongly upset when doing activities like this?
For me, the first thing was a few times I attended an on-campus yoga class as a 17-year-old college freshman. The exercises were okay (if difficult for me, given that I have a couple of minor physical disabilities as well as motor skills impairments), but when we got to the end and has to lie in corpse pose, I would break down and cry and sometimes have to leave. One time I went and the entire session was on "rest poses". I took it for as long as I could before running out of the room to the indoor track, where I ran and ran and self-injured. I was probably crying then, too, though I don't remember it.
For me it wasn't sensory, or at least I don't think it was. It felt like something was ripping my mind open from the inside.
Later on, I took up meditation for a while. The first time I tried meditating, it brought up serious suicidal thinking, but I've dealt with suicidal thoughts for years and manage them without acting on them (a form of self-taught mindfulness, I believe). I kept meditating to try to delve into what was bothering me so much and resolve it, and fairly quickly meditation became an overall positive thing. It can help me with my concentration and reduce compulsive tendencies if I do it daily. If I meditate after going many months without doing so, sometimes I get an echo of those negative emotions.
Really interesting to find out that at least one other Autistic person has had a negative reaction to mindfulness and yet wanted to go on trying.
Good for me. TQ
ReplyDelete