Meltdown

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.

Stimmy songs

So there’s two things. First of all, I was at this autistic people networking event tonight which is all kinds of awesome but also kind of overloading. So after about two hours I went outside for a bit and stimmed my heart out to these songs. And I’m sharing because I just think they’re brilliant and who knows, someone else might like them too.

And yeah I mean I stimmed my heart out with all the elbow flapping and shoulder twitching and head nodding that implies. Fuck whatever anyone thought about it. IT FELT SO GOOD.

And that brings me to the second thing. Work in progress, but Ben and Nattily have helped me put a first version of The Stimming Checklist online. You can find it at http://what-is-stimming.org. We will be adding new features soon but for now you can at least see an overview of the ONE THOUSAND TWO HUNDRED THIRTEEN stims that have been submitted so far. Stay tuned!

Some things cannot be unseen

So.

Erm.

There’s this engineering company in the Netherlands.

And one of my coworkers once remarked that their logo.

If you look at it upside down.

Looks a bit like a pooping dog.

So I cycled past one of their construction sites today and there was this sign.

And I said “POOPING DOG!” Quite loudly. And it made me giggle.

And then I had to really focus to not keep on saying “poopingdogpoopingdogpoopingdog” all the way home.

Yeah.

I know.

Being weird is fun. 😛

The stimlist needs your help

A couple of days ago, I wrote a blog post about stimming and why I’d always thought I didn’t stim.

In that post, I added a survey so people could list their own stims. Autistic stims, but also ADHD stims, OCD stims, Tourette stims, manic stims, depressed stims, stressed stims, and any other stim you can think of.

The response has been overwhelming. Over 250 stims have been added so far, with more coming in every day.

Have a look at the responses so far.

So. This is big. And I want to make it even bigger. Because perfectionism, right?

But I can’t do it alone (argh!). I need your help.

Please post a link to the stimming survey on your blog, Facebook page, Twitter feed, Google+ circle, Tumblr, or Pinterest. Or link to this post. Comment on other blogs. Spread the word.

We’re doing this for everyone who’s ever been judged for their stimming and for everyone who never knew that their “nervous habits” were stims. We’re doing this for awareness and acceptance. We’re doing this for all of us. Let’s see if we can get this to 1000 stims!

Direct link to the survey:
https://docs.google.com/forms/d/1-eKrnAu29UFatFCS3FrJOs-ghAh436uZKewiWvBOO_A/viewform

Direct link to the survey results:
https://docs.google.com/forms/d/1-eKrnAu29UFatFCS3FrJOs-ghAh436uZKewiWvBOO_A/viewanalytics

To embed the survey on your WordPress.com blog:
[googleapps domain="docs" dir="forms/d/1-eKrnAu29UFatFCS3FrJOs-ghAh436uZKewiWvBOO_A/viewform" query="embedded=true" width="760" height="600" /]

To embed the survey on another website:
<iframe src="https://docs.google.com/forms/d/1-eKrnAu29UFatFCS3FrJOs-ghAh436uZKewiWvBOO_A/viewform?embedded=true" width="760" height="600" frameborder="0" marginheight="0" marginwidth="0">Loading...</iframe>

Twirling my brains out

Stimming. Probably one of the most controversial of all autistic behaviours.

Man, people get upset about it.

On the one hand there’s ABA therapy which (as far as I’m aware) aims to analyse stimming behaviours and tries to modify or eliminate the ones that are classified as “non-functional” or “inappropriate” as much as possible. People saying that stimming means the autistic person can’t concentrate, or is not paying attention. Or that it makes others uncomfortable around the autistic person because it’s so obviously different. That to be accepted as “normal”, the stimming needs to be as unnoticeable as possible. That stimming makes autistic people the target of bullies.

On the other hand, there’s Autistic Pride. Loud Hands. The joy of stimming. The fact that it is a very effective way to self-regulate, especially when dealing with sensory processing issues or overwhelming emotions. The emerging notion that it actually helps autistic people with learning and getting better results in school. That trying to take away the coping mechanisms of the autistic person, increases the chances of a new coping mechanism popping up, one that might actually be more harmful because the autistic person couldn’t use a less harmful one to cope sooner. And the anger and pain that despite what others have said and maybe hoped for their autistic child, hiding or eliminating more obvious stims doesn’t truly help in getting accepted and not getting bullied.

Despite all the controversy, there’s still a lot of confusion over what stimming actually is.

When I first read about autism, I started looking at things in a new light. Things in my life that seemed to fit the description. I looked at experiences that I’d never linked together and suddenly things made sense to me. I was sure I was autistic.

But I was convinced I didn’t stim. It actually rather worried me, because I was afraid that without stims I wouldn’t be autistic enough to get diagnosed. Well, alright, I did have a tendency to get very bouncy when I was excited about something. But that’s not really stimming is it? Stimming is the flapping and the rocking, right?

And then I read somewhere that playing with your hair is a stim. And I thought, “Hey, I do that. A lot. Actually a whole lot. In fact, my mum was always telling me to leave my hair alone.” And then I read that Alyssa of Yes, That Too strokes the satin binding on her blanket as a stim. And I thought, “Mmm satin binding, that feels nice, I need to buy more stuff wi… Hang on. That’s stimming too? I do that.”

So. After reading that Alana of Sleep wake hope and then thought she didn’t stim either (hey, it’s not just me), I had this idea that maybe we need to put together a resource. A list showing all our unique ways of coping with our environment. A list that might help others recognise the same things in themselves.

Autistic people. But also neurotypical people.

Because everyone stims. And it’s so much more than just rocking.

If you think this is a great idea, please add your stimming behaviours to the list by filling in the survey above! It doesn’t matter if you’re autistic or not. They can be as normal or as odd as you like. The only criterium is that YOU feel it’s a stim. After filling in the form you will see a link to the survey answers so far. Who knows, maybe you’ll recognise some extra ones! In that case, no worries, you can fill in the survey as many times as you like.

I’m not entirely sure yet how I’m going to make the results permanently accessible, but I hope this will at least be an interesting start!

Edit: I’ve figured out how to link to the stimming survey results!

Tripping down memory lane

Age 10. The high point of my “I only want to wear blue dresses” phase. I really hated that video camera flash light, which is why I’m keeping my head down. My youngest brother is not allowed to touch the puzzle pieces (normal sibling behaviour) because I’ve already sorted them according to category (not so normal).

I must have been about 8 or 9 here. Still sucking on my fingers and playing with my hair. Not interacting with the other kids at all.

My 7th birthday. My grandmother is explaining something about my birthday hat, I’m obviously concentrating on what she’s saying but I don’t look at her or smile until she’s done talking. My grandmother might have been on the spectrum too.

Age 5 or so. Flapping my knees. Also forgetting to put on facial expressions unless prompted, and then they’re slightly overexaggerated. 😉

Age 6. Toewalking. Toerunning. Overall fairly uncoordinated motor skills.

I’m not posting the one of me and my younger brother spinning in circles in the back garden because we weren’t wearing much, lol. I don’t think I come across as autistic in these videos all that much, just slightly “off” maybe. But not to the level where I’m stimming in every single video, for instance. And I’m obviously interacting with my family. So I’m not entirely sure what to make of this.

Edited to add:
In fact when first watching all the material, I saw myself behaving like a typical child. The videos start in 1980 when I was 4 and my younger brother had just been born. As the years progressed, my behaviour kept on feeling normal, and that feeling got confirmed when I saw my younger brother behave the same way at the same age.

And then I saw my youngest brother appear on screen, born in 1982. The contrast is absolutely frightening. He is constantly looking at people and smiling and pointing and touching and interacting with them on every possible level. He doesn’t fidget, even as a baby and a toddler. He looks bewildered sometimes but mostly in response to something I or my younger brother do.

As if even at that age, he already understood the rules of social conduct better than we did, and saw neither me or my younger brother following those rules. It’s now nearly 30 years later and he still looks bewildered by our conduct sometimes. 😉