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.
© Julián Rovagnati – Dreamstime.com
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 
Sounds an awful experience: I can identify with the vulnerability, with the pain, with feeling overwhelmed and becoming unresponsive, unable to function. With causing myself pain to gain a measure of focus, of control.
I hope you are able to decompress and recover soon. Sending *hugs*.
Thank you so much! It happened a few days ago so I’ve been slowly getting my energy back since then. It’s so incredibly draining. Your hugs are very much appreciated.
Every time I have tried to meditate, I’ve reflexively shied away from it. Now I think I know why.
I think, and apologies for the really crappy comic book analogy, but for anyone w/ sensory issues to meditate freely, you’d first need to be in Superman’s Fortress of Solitude.
I hope you’re able to find your center again soon.
Yep. I’ve found my own way to deal with the noise, but basically the room where the training is being held is anything but sensory friendly. I should have stepped out of it as soon as I felt myself approaching meltdown, but the social pressure I felt was enormous. “I’m supposed to do this exercise. Everyone else is doing it. Nobody else is melting down even though they’re autistic too. I can’t let them see me like this. I want to leave. I can’t simply get up and run out of the room, that’s rude.” Meltdown accomplished.
Oh, many hugs to you!!!
Thank you, hugs back!
Thank you for sharing this! I’m hoping, if you want to work on meditation as an enjoyable part of your life, that you are able to find a better environment. It is challenging even for NTs! Wishing you the peach you seek.
Environment is key! I’m so fortunate to have my own home, which I already furnished in a very sensory friendly way even before I knew there was a word for what I experienced! I just went with what made me feel comfortable. Doing the breathing exercises in my safe place feels far better than doing them in the group sessions.
Sounds like a pretty good therapist who can understand what was happening and what you needed! Some therapists would accuse people of trying to get attention or being dramatic or something. 😦
I would have expected this therapist to understand, since it is a mindfulness course specifically targeted towards autistic adults, and the entire group is autistic. But she was very compassionate and patient.
Still, you’re right. It’s pretty rare to find a therapist that understands autism.
This sounds horrible – I’m sorry that happened to you. I certainly know how it feels to not be able to respond, and have everyone in a group expectantly waiting.
Take care of yourself!
It was a pretty harrowing experience, but mostly because I simply couldn’t block out any sounds. All my self-regulatory mechanisms were gone. The group aspect was just the cherry on the shittiness sundae (credit for that phrase goes to my friend Blythe). 😉
Based on the comments and above and the last sentence in your post, I take it to mean that this is something that happened to you (a description of your own meltdown in third person), although that wasn’t how I understood it until I saw the comments.
In any case, I can relate to that! My therapist made me do a mindfulness excercise with closed eyes paying attention to sounds et.c, and my sensitivity to sounds and other sensory details was greatly amplified. I imagine the same could happen during meditation. That was not a bad experience overall though except during that time, and wouldn’t have let to me melting down (and did not) unless in the case where I was very sad or overloaded in advance, and the attention to my own body sensations and feelings made me become conscious of it and loose self control. That could be another possible explanation for what happened, since awareness of feelings and body sensations is part of the purpose with mindfulness training, so it tries to do that.
Yes, I was being a bit tricksy. I thought about writing this post in a normal way, from my own perspective, but then I had the idea that there are a lot of people who only see meltdowns from the outside, for instance with their children. I wanted to evoke that feeling, showing that you never know what going on inside someone’s head unless they find a way to communicate that to you, and that is a big problem sometimes, even for someone like me who seems to have all these words at her fingertips.
Great as always. I’m finishing a post on meltdowns at the moment and your’s magically showed up in my inbox. I might tag you in the post and link to this one if that’s alright. Let me know if that’s ok?
Excellent piece 😉
Of course that would be OK, I’d feel honoured! And thank you so much for the compliment.
I thank you so much for sharing, what you are going through (all of you). As a grandma my first grandson Jesse is autistic. Not yet formally diagnosed he will be 3 years old Feb 10th.
I worked as a bus driver for special ed, an do have limited experience with autism. He has been in a learning center for about 5 mos now thank God the kids now have some help an understanding of how to proceed an help my little angel. So again thank you all for helping me understand what he feels. Deb
Thank you for leaving a comment! I’m pleased to know that my experiences and those of other autistic adults can help our little brothers and sisters on the spectrum. Understanding and acceptance is the best gift you can give him, besides your unconditional love of course! 🙂
I read your blog and more and more I am happy that I have met you in my life. It makes me see my own experiences in a different way. I hate crowded places. I could hear the faintest sounds in the distance that noone else seems to even understand that they are there.
This story also reminded me of something. As a child (and sometimes still do) I used to fall asleep with music in the background, usually with headphones on. It might have been something I used subconciously to distract me from the other noises. At least with the music I listened I knew what was coming and I took comfort in that. I would rather have that any time compared to random and unexpected noises.
Also the feeling of “I have to do this”, I think many are pushed into things because it is something they feel they need to do or they are being told so. I think you touched this in another post. The fact that have to work at things. These actions/words/motions that are expected of us without even realising it can be (oh but you are so smart you can figure it out/oh that is so easy and many many more). And many push themselves to comply but on the expense of ourselves. It is not an ideal world but taking words literally has that effect.
I’m honoured that I can be part of your journey! You are a very courageous woman, examining all these things in your life and figuring out what is going on. I’m glad that my blog can help you with that!
(Besides, you do a great job sanding down doors). 😛
Reblogged this on The World of Neil and commented:
Focussing on my ASD children, its easy for me to forget how it affects adults. Take care x.
Wow. Super powerful post. Gave me a lot of food for thought… My own therapist is really big on mindfulness and grounding and meditation and stuff. Personally, I HATE when she tries to have me do it with her in a session. This kind of thing will put me in a non-verbal state faster than almost anything else. I didn’t really understand why that was until I read this post. Maybe it leaves me too open and exposed. She seems to think it will calm and center me, but I’ve always balked from it. I can try and do things like that on my own if I’m in a quiet safe place, but I cannot do it in front of other people. It lays me bare in the most painful of ways. Hmm. Lots to ponder. I think I need to bring this up with her next session. Clearly mindfulness exercises that work for NT people doesn’t always word for ASD people.
What worked for me in the end was some pretty intense visual stimming (hyperfocus on my hands) while doing the “listening” meditation. But it was still hard, and you’re absolutely right about the quiet safe place. The place where we were doing the exercises was anything but.
Do you ever feel like some of the meditation/mindfulness stuff seems just plain silly? Yesterday my therapist was trying to get me to “release the tension in my stomach” and everything she said I just couldn’t help feeling like it was all so ridiculous. Maybe it’s too abstract for me? I don’t know. A lot of just seems dumb to me.
While simultaneously feeling too scary and exposing. 0_o
The book I have (unfortunately available only in Dutch) actually addresses that in detail, because it is written specifically for adults on the spectrum. No silly stuff like “Push your attention down into your toes”. Erm. How?
It’s also very important to distinguish between MBSR (mindfulness based stress reduction) and MBCT (mindfulness based cognitive therapy). The latter is far more common, but the former is more effective for autistic adults, because cognitive therapy focuses on thoughts and feelings, which is just too much to handle in combination with the exercises.
I find a lot of it a bit silly, because I can hear the therapists literally repeating stuff out of the book (“How wonderful of you to recognise that you are getting distracted! Well done!”). But the breathing exercises are useful, and the body awareness is something that a lot of autistic people struggle with.
I personally prefer yoga because it keeps me focused and active, and it is challenging in a very physical way. But you need a lot less time and prep stuff to do mindfulness exercises.
Wow…I find myself wishing I spoke Dutch. It would be really helpful to read something that addressed that, because I just find myself being distracted by how abstract and bogus it seems sometimes. 😛 I didn’t know there was a distinction between MBSR and MBCT…I’m not sure what my therapist has been using. I’ve found that very few cognitive therapy based techniques work for me. Forget CBT. Doesn’t work. Anyway, I guess need to do some reading on MBSR vs. MBCT…
I agree that breathing exercises are helpful, and it IS good to learn body awareness (although sometimes I stumble into being TOO aware and then hyperfocus/obsess…which is just never fun). I think I would like yoga more too…I’ve wanted to try that recently.
Do you dislike practicing the mindfulness stuff in front of other people? I know in your post you talked about how the sensory features in the environment/room helped cause your meltdown, but what about being in front of other people? Do you find it icky too? I can’t do it in front of my therapist. It’s soooo awkward and horrible.
Yeah, it’s definitely icky, but I have lots of experience in completely ignoring other people. It’s still hard, though.
The TOO aware thing is what tripped me up with the auditory overload. But the visual “overload” while doing the auditory exercise sort of balanced it out. Not saying it would work for everyone, but it might be worth trying. A tactile stim or olfactory stim would probably work as well, as long as it has enough detail to keep you occupied for 10 minutes or so.
Actually now that i think about it I think my therapist uses Dialectical Behavioral Therapy (DBT) techniques. How much do you know about DBT? If you do know stuff about it, is it related to MBSR and MBCT?
It would be nice to not have to dissociate to survive. I can’t help but think somewhere, somehow, there’s a way to feel your feelings and hear the words and be in your body (and by you I also mean…me, and she, and he…) that is not so painful, but that context – however well-meaning – does not seem to be “the one.” Hope your hand is healing. Love
Thank you, the hand is doing fine (except for the cat scratches, but that’s a whooooole different story, lol). I don’t think there’s really any way to do all those things though, unless I get “cured”. Which I don’t want. But in my reality, it simply means not biting off any more than I can chew. And maybe that’s less than other people can chew. But because I take smaller bites, I can also taste it better. Crazy metaphor. I just mean to say that it’s ok to be me, and that I don’t need to look at others to see how much better they are coping. 🙂
There is a way to achieve self integration and because it’s under an individual’s control when to do it, it certainly not a cure. I use it myself and with lots of autistic children and adults. The most often comment is ” it’s good!”
Here is a link for a script for someone to read out loud. http://www.dyslexia.com/library/print/Davis_Alignment.html
The link is from a dyslexia site, but the technique was developed by an autistic man (Ronald Davis). Ron has written several books about his journey through dyslexia and autism.
That sounds interesting! Thank you for the link.
Oh dear – I so hope you know I don’t mean you need a “cure”!!!! I just mean self-integration is something we deserve. So we find the ways – the small bites, the total avoidance of, say, ceiling fans and abusive family members (um, did i write that out loud) – in order to not have to melt down too often. Good metaphor!!! Love
I appreciate reading this so much. My 12 year old son is on the spectrum, and reading the words of adults on the spectrum help me understand him. Thank you xoxo
I’m so glad to hear you find it useful! It really means a lot to me that my words and experiences can help you understand your son. We’re all different but there are some things we all struggle with from time to time. Thank you for leaving a comment!
I’ve had mixed experiences with mindfulness and meditation. Whenever it’s been with a therapist it’s been bad, but when I attended a meditation class at a Buddhist centre it was a totally different experience. I’ve never been calmer or more able to deal with life than those few years when I meditated daily, unfortunately life threw me a curveball and I stopped meditating. I’m finding it really difficult to get back into, but I’m trying hard – it worked far better for me than any amount of medication or normal terapies.
The easiest exercises for me are simply focusing on my breathing, wherever I am, and the body scan (which I call “saying hello to all my body parts” because it just sounds far more fun). Maybe you just need to ease back into it instead of trying so hard and (from the sound of it) being upset with yourself for not succeeding. Even a five second moment to take stock of yourself, your emotions, and your surroundings is much better than nothing!
wow…… I just love how you tell a story… powerful.
Thank you!
Thank you for such a vivid description of what it’s like to experience a meltdown.
I’m also highly affected by noise, though for a different reason—-severe hearing loss. Highly reverberant rooms and noise can be debilitating, making me unable to understand what’s being said. Many people on the spectrum can also have significant trouble understanding speech in the presence of noise, too.
There’s a lot that *can* be done to try to improve the acoustic environment. Would it be possible to talk with the therapist ahead of time about this? For example, she might be able to use a room which is not on the street and which has better acoustics, and to get and use curtains designed to reduce noise transmission. There are also things that can be done to improve the acoustics of a room, like adding soft porous surfaces to absorb extraneous sound, padded furniture, rugs, using tapestries on the wall, etc.
Thank you for your comment! I didn’t know hearing loss could affect people in the same way, but it makes perfect sense the way you describe it!
The therapist basically acknowledged that the room isn’t ideal, but that it’s all they have to work with. It’s a spare meeting room in the diagnostic center, with all that that implies. Hopefully my meltdown has made them a little bit more aware of exactly how profoundly that can affect autistic people, even though they’ve been doing this course for some time now.
Thank you for bravely reliving your vulnerable and painful moment. I draw comfort from a few things you shared, because I had a similar experience, but my outcome was very different due to a worst case scenario of responses. You struggled to find words in that moment, and it is obvious you are very articulate. I have this phenomenon, too, at times–and if you can’t speak for yourself about what is happening, you are at the mercy of those who can and will speak for you. Also you describe inflicting pain on yourself with the intent to disarm some other psychic or physical pain. I didn’t realize this could be a spectrum reflex, but it makes sense. I wish more therapists were enlightened enough to recognize meltdowns and not be too quick to label them something else. Too many would look at this superficially and rush to judgment about self harming. There is a woeful lack of discernment for these situations, even among “professionals”.
In my case, I had a horrible experience at a social event gone wrong that left me speechless with stress and shock. I managed to get home without cracking, but once I was home, the tears and rocking and tearing at my skin commenced. I had never done this before-inflicted any harm on myself. A family member saw marks on my arms, and assumed the worst instead of asking me what had happened. I was taken in a state trooper’s car to the hospital–in hand cuffs–so that I “would not be a threat to myself or anyone else”. It took hours in the ER to get to the point where I could process the duress I had experienced and explain it to someone. By then, they had already concluded based on circumstantial evidence that I was suicidal–which I wasn’t. If my husband hadn’t arrived and intervened, I would have been admitted to the BSU.
I hope your post opens up some helpful dialogue for caregivers and therapists and misguided loved ones. I don’t wish the trauma I experienced on anyone else.
Oh my god! That is the stuff of nightmares. Having to spend hours in a brightly lit, noisy ER after a meltdown is bad enough. But to get taken there in handcuffs? To nearly get committed against your will? You’re right that this happens far too often to people who are (even momentarily) non-speaking, and this should change. I’m so, so sorry you were put through this.
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Would it be okay if I shared this post with Facebook and other special ed teachers in the school district I work in? It is such a beautifully written insight into what happens (often daily) to some of the children I work with, and helped me to understand. So often teachers and aids get training on HOW to deal with sensory issues without understanding what these issues feel like. I hope with understanding that only posts like this can describe, there will be a more compassion as opposed to tolerance.
Of course that would be okay, as long as you link back to the original post. Thanks for the compliment!
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