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

© 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.

Words are fucking difficult

Apologies for the NSFW language. But not really. My words have decided to go play hide and seek again tonight. Not as badly as the night of my first blog post, because I can still write, although it takes a bit more effort than usual.

But the talking?

Yeah, not so good.

What Others Had to Say: Love, Overwhelm, Violence

OK this is pretty awesome. Also because I got quoted (whee!) but seriously, so many parents and autistic adults sharing their experiences with upset turning into violence. Make sure to read the original post and comments as well. There is support. It’s here, in our voices, in knowing what you’re going through. You’re not alone.

Emma's Hope Book

Yesterday I wrote a post entitled, When Upset Turns Violent.  I wrote it hoping for feedback from those who may have at one time, or currently have felt so overwhelmed they strike out and from parents who are on the receiving end of children who become violent.   I wanted to get a better idea of the kinds of support that might be beneficial to all involved.

As the comments came in, both here and through email, I realized a few things.  One was the shared feeling of shame so many felt. Tremendous shame was described by almost all the parents of kids who express themselves violently, as well as some who become so overwhelmed they become violent.  Exacerbating, or perhaps a part of the shame, was the feeling that this should not be spoken of for fear of ridicule, blame and judgment.   Many people remain silent, which…

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Smile

I was thinking about how nervous I was about the diagnostic process and her reading my letter. Trying to keep my breathing even. Looking at a painting on the wall. Trying not to fidget too much.

“Do you realise you’re smiling right now?” said the therapist as she looked up from my letter.

I looked at her, feeling confused. “What do you mean?”

She clarified, “Here in your letter it says you often smile at inappropriate moments. So I was wondering if that was what is happening now. You’re smiling. Are you aware of that?”
smile-right2
I started grinning and said I had no idea I was smiling. And then got completely confused about what I am saying because yes I know I am grinning now. But not smiling a minute ago, I didn’t know that. Was I really smiling?

She said she could see that the grinning was a nervous reaction. Those things are obvious to people who can read faces, I guess? And she said she understood what I was trying to say. So I could stop worrying about my words and what my face was doing without me having any control over it. When I had permission to stop doing words I could start feeling. I felt… at a loss for words. That’s how they call it when you can’t grasp a concept, when it doesn’t fit reality. When things simply don’t make sense. I don’t know how to describe my feeling.

I was smiling.

I didn’t know.

Yes, I’m sure

It’s taken me some time to get around to writing this. But I need to write it down, and do it well and concise and understandable and logical and open and as vulnerable as I can bring myself to be. Because this Tuesday I’m scheduled to have my last intake interview at the mental health clinic. Where they are going to tell me whether in their opinion I am autistic enough to get help. Or I should just accept whatever help they are willing to offer me, even if it’s treating the symptoms and not the cause. Or maybe I’m just a big crybaby who should go home and try harder.

To the person doing the interview,

When your colleague called me three weeks ago to tell me that the team wasn’t yet of one mind and that’s why you wanted to schedule another interview concentrating on my social interactions and the possibility of depression, I felt very angry. I understand that you want to be thorough in your approach and I support that. But I am very much afraid of not being taken seriously and not being listened to. That is why I am giving you this letter, instead of addressing these concerns verbally, because I have less trouble articulating myself on paper than I do in person, especially where emotions are concerned. And this is a very important and emotional subject to me. I hope you understand this. I would appreciate it if you read this letter through to the end before commenting, but please be assured that I will do my best to answer all questions and comments you might have afterwards.

Core problem

I am functioning at a reasonable level without any supports, except for the fact that I have been fired or otherwise let go from 8 of the 12 jobs I have held in the past 13 years. I have a university education (although without a degree), which has enabled me to work in professional or near-professional level jobs. I have never had formal or informal complaints from supervisors or coworkers about the quality of my work, meeting of deadlines, or other work-related issues.

Instead, in the cases where a reason was given for dismissing me, it was always along the lines of “stubborn”, “impossible to work with”, “doesn’t listen”, “undiplomatic”, “devious behaviour”, “untrustworthy”, and so on. This was never addressed during my employment, or not in such a way that I saw what was happening and could anticipate and address problems arising at work. Every time I’ve been dismissed, I was taken completely by surprise.

I do not have any problems or complaints in other areas of my life that pose an impairment to my current functioning.

Depression

I understand that you wish to talk about depression. I do believe this is a logical request related to the suicide attempt that I have listed on my intake form. However, as discussed with your colleague in the previous interviews, I do not have any complaints or feelings of depression. My attempt was over 15 years ago, and I haven’t had any suicidal or depressed feelings since. I do not feel it has any bearing on the core problem I have sketched in the paragraphs above. I hope you can see why I feel this way.

Other concerns

As mentioned, I don’t experience other significant impairments. However, there are several traits that I feel might be related to my core problem, based on the official diagnostic criteria for autism and keeping in mind specific development in not previously diagnosed adult women. “Often” in the below context means more than once every two months. “Occasionally” means around once or twice a year.

  • Social interaction
    • I often get told not to take everything literally
    • I often get told how naive I am
    • I often get told that I said something very rude without realising it
    • I often get told I sound authoritarian or overly sure of myself
    • I often get told my spoken and written language is overly correct and formal
    • I often have trouble identifying emotions in others
    • I occasionally get told off for inappropriate copying of other people’s words or mannerisms
    • I often get told to smile more
    • I often get told smiling at that particular moment was inappropriate
    • My mother often told me when I was a child that my face and posture were unresponsive
    • I am often able to repeat an entire conversation word for word, but have no idea what kind of facial expression the other participant(s) had during the conversation
    • I occasionally get confused about who is currently speaking when talking to several people in a noisy environment
    • I often get confused when someone asks me “how are you?”
    • I often have no idea how to maintain my side of a social, informal conversation that does not revolve around the exchange of pertinent information
    • People often have to tell me specifically that certain information is restricted or sensitive or private.
    • I often get told I come across as uninterested in how other people feel or what they say
    • I often get told I come across as intensely focused and interested if the subject of conversation matches my interests
    • I occasionally get told I appear obsessed with people in the early stages of a friendship or relationship
    • I often have trouble maintaining friendships
    • I often don’t realise someone doesn’t like me until someone else tells me
    • People often don’t laugh at my jokes
  • Restricted interests or behaviours
    • I have (and have had as a child) several intense interests that do not match peer or age appropriate interests
      • I never got the hang of colouring outside the lines. That was what the lines were for.
      • I liked calligraphy although I never really got the hang of it. I settled on typography instead. At age 9.
      • I created passports for all my Fabuland figurines so I’d know how they were related to each other. I included imagined genealogies and “passport photos” I’d cut out from toy catalogues.
      • Another hobby from around the age of 10 was drawing detailed floor plans of fictional houses.
      • On holiday, one of my favourite pastimes was to look up German license plates we saw on the road and see which city they came from. We had a list in the back of our German road atlas where I crossed off the ones we’d seen.
      • I collected rocks, shells, bits of pottery, stickers, postcards, pressed flowers, things with cats on them, colouring pencils and crayons, buttons, beads, coins, and stamps. I adopted my dad’s match book and sugar bag collections. I still collect stamps and still haven’t found the courage to get rid of my buttons and beads. Or my foreign coins, come to think of it.
      • I have had the entire script of “Monty Python’s Life of Brian” memorised since around the age of 13. Yes, I made that website. It’s horrible and I made it a few days after I taught myself HTML.
      • When we watched “I, Claudius” at school when I was 14, I made a complete genealogical tree listing all the characters and their relations to each other, for fun. I had read the book by Robert Graves (in English) but I also got Suetonius from the library to use as source material. I took the tree with me to class.
      • By age 16, I knew the lyrics to around 150 Beatles songs by heart, and to nearly all the songs Ella Fitzgerald has sung (and I can sing them, too).
      • When the student I was partnered up with – to do a tour of Bernini’s sculptures in Rome – forgot to make a photocopy of the notes I’d given him, I did an improvised tour instead by narrating the Greek myths the statues were inspired by. I’d watched The Storyteller a lot.
      • I am not a complete Star Trek geek. I just know the general storylines and names of all the main and most of the secondary characters – up to Voyager – and I’ve probably seen most episodes more than three times. I also like to read articles on Memory Alpha for fun.
      • At the age of 35, I methodically and systematically changed my fashion awareness. I bought over 50 pairs of shoes in less than 2 months to make sure I had a pair in every necessary colour and style. Those were not impulse buys to make myself feel good, or behaviour that I was unable to control. It was on purpose.
      • I often get referred to as “the walking encyclopaedia” for my love of trivia and extensive knowledge of facts and figures.
      • I know everything there is to know about ingredient lists and additives and cheap substitutes for proper food and will gladly bore the tits off anyone about nutrition.
      • I need to have my books sorted first by language, then by alphabet. No exceptions. I have held discussions with friends on how to properly organise my books.
      • I have taught myself electrical engineering.
      • I have taught myself HTML.
      • I have taught myself Italian. Although not fluently.
      • In many of the online games I play, I’ll be the one making the list of all the player coordinates on the map. Or the list of quest items my alliance needs to collect. Or the Excel sheets with formulas to track character development.
    • I often have trouble moving on from a project when it’s not “finished” or “perfect” yet
    • I love watching things spin, like the washing machine
    • A visual break in or deviancy from a pattern can make me feel physically uncomfortable. (Especially #3, #7, #14 and #19).
    • I am hyperreactive to auditory, tactile, olfactory and visual stimuli
      • For as long as I can remember, I have twirled or stroked my hair or stroked my own clothes to comfort myself.
      • I can’t sleep when there’s sand or crumbs in my bed. I’ve been told not to make such a fuss by others. Princess and the Pea style.
      • Occasionally the tags in my clothes, or a seam that rubs against my skin, can drive me crazy.
      • I can’t have a conversation while the TV is on or the radio is playing.
      • I often get laughed at for visibly jumping when something makes a loud or unexpected noise.
      • I don’t like bright directional light or overhead fluorescent light.
      • I get very uncomfortable with images shown in quick succession, or with lots of variation in orientation and tilt. Watching a Minecraft roller coaster video makes me feel ill.
      • I am very sensitive to strong artificial scents, like being able to smell other people’s laundry detergent and shampoo – not to mention perfume or aftershave (Axe/Lynx should be classed as a WMD in my opinion). I could do this even when I was smoking two packs of cigarettes a day. It’s worse now.
      • I used to be a very picky eater, now it’s only vinegar that makes me physically ill. And hard-boiled eggs.
      • Even as a baby I refused to drink cow’s milk. My mother weaned me off breastfeeding when I was around 10-12 months old and I haven’t drunk any milk since.
    • I have not-so-good spatial awareness and proprioception
    • I often get called clumsy
      • I drop things daily
      • I often cut my fingers or hit myself accidentally
      • I often walk into things
      • I often have bruises on my legs and arms that I don’t remember getting
      • I occasionally fall backwards without any particular reason
      • I have to be very careful when going up or down the stairs, I trip easily
    • I used to have problems with fine motor skills as a child
      • I have very good handwriting now, but I still hold my pen “the wrong way”

  • Other
    • I often do not hear someone speaking to me when I’m focused on an activity, like reading a book
    • I often have executive dysfunctions in the following areas
    • I’m often anxious about social interactions
    • I’m often overwhelmed by sensory input
    • I have strengths in the following areas:
      • Attention to detail (for example proofreading, I can spot a typo from a mile off)
      • Problem solving and analysis
      • Very good phone voice. I didn’t get a pleasant voice by accident. It takes concentration and practice.
      • Not letting angry customers “get to me”
      • Scripting customer interaction
      • Writing user manuals
      • Highly acute sense of fairness and honesty
      • Very loyal
      • Love to learn new things and apply knowledge in new ways
      • Getting along with programmers

In summary, I don’t feel very impaired by these traits, but I do think they shouldn’t be seen separately from my core problem.

Let’s talk cat

I have a friend. His name is Guido. He likes a lot of the same things I do. He also likes to do things that I think are weird. But that’s ok. He probably thinks the same thing about me.

He is a cat which means his brain is quite small. He doesn’t spend a lot of time talking about abstract concepts. But he is very outspoken about things in the here and now. Like give me food. Or let’s snuggle. Or leave me alone. This makes it easy to know what he wants. I never have to guess or worry that he might say one thing but mean something else.

I like being friends with my cat even though our different abilities mean that sometimes it may seem a slightly inequal friendship. I get food for him, clean his litter box, and open doors when he wants to go out. He gives me headbutts and makes me laugh. But I know that he is here because he wants to be, not because he needs me. If anything, I feel slightly bad for wanting him to need me. After all, a cat can hunt his own food. So me choosing food that he can’t get by himself: that is my preferences making him disabled in that area. The same goes for his litter box. Just because I want him to use the litter box doesn’t mean he is less than me for not being able to clean the litter box that I want him to use. We both understand that.

Sometimes people joke about me being “crazy cat lady” for referring to my cat as a person. Which is silly. Because my cat is not a person and I don’t see him as such. He’s a cat. If I pretended he was a person, I’d be denying the things that make him a cat. So. He’s not a person, he’s not my baby, I’m not his mommy. But he is my friend, because he likes spending time with me. How else would you define friendship?

Words words words

I am so helpless like this. I need words.

My brain is locked. Where is the key? I think maybe smiling is the key.

Frowning makes it harder.

But I am frowning because all my words are locked up.

It’s not the fault of writing in English. My words are just as hard to access in Dutch.

In person I would probably not say anything.

It’s why they say autistic people are stupid. No words. They’re wrong. This is not stupid. It is disability.

Reading words makes it easier to find words. I am using your words to find my own.