Saturday, December 28, 2013


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.

Monday, December 23, 2013

Please Don't Rush Me.

It’s Not Always As Funny As I Make It Be

There is a subfield in educational psychology called risk and resiliency studies, and it is pretty interesting. It is not my field but I keep track of it because the findings of my colleagues here have bearing on the things I do in my work. One of the first things I heard from them which stuck with me is that a major resiliency factor, or something that can what they call ‘inoculate’ you against whatever may happen in life so you bounce back maybe better than you might have done otherwise, is a sense of humor.

For me, I think this might be true. I am a generally joyous person and the fact that things which happen to me in life can crack me up even if they are mostly on the heinous side probably is what keeps me like that.

But this blog, We Are Like Your Child, was created because so many of us who are resilient because of this and similar reasons may seem to people who are not-us as if we are performing “Dancing Through Life” in the musical Wicked. This does not help others relate much in the practical realm, because it is not, strictly speaking, what they call Keeping It Real. (But I still recommend keeping it funny and musical when you are able, because it does help me and my friends bounce back, and also Studies Have Shown.)

Recently I have been having a very hard time with time management, conflicting and equally unhelpful notions of fast and slow that people might get about me as a result of my time agnosia coupled with lateral thinking and divergent communication style, and the catastrophic results of rushing. The hard time I have with these interactions sometimes is probably accurately described as ‘crushing’ or ‘devastating’ even though it is difficult for me to type such emotionally fraught words, just to let you know, because of my natural desire to keep it light… I should just now also report the discovery that when not keeping it light, more pain is experienced. OK: on with it.

In my blog I talk about time agnosia in my ordinary manner. Here are some links. A silly one HERE and this one HERE which is more useful but still light in tone. But if you think about what it really means, you will also find that it is often quite the inconvenient impairment and can create threats to such important things as my job security and my ability to let people know the true extent to which I care about them. In the culture in which I live in the northern part of the US, predominantly organized by “white” heteronormative values, middle class, academic, etc., “being on time” is meant to communicate respect, caring, and a host of other things. Whole virtues such as ‘promptness’ and ‘punctuality’ are built around this concept. It is even part of our construct of ‘reliability.’ This means for me that in the baseline of my normal daily life, there is always thrumming throughout the fabric of everything social a high-anxiety expectation and probability of failure, shame, miscommunication, etc., even though I have a remarkable system of electronic and social scaffolding in place to ward off actual disaster...

Notions of “fast” and “slow” are related to this, for me, and equally permeate my life in hurtful ways. I believe these have to do with time-to-respond, which is not something I am easily able to gauge in myself, but I have seen in interactions among others and also in the way people react to me. Apparently “fast” (or “intelligent”) people respond rapidly and “slow” people (who might be called insulting words and condescended to) take a while. I am both of these alleged kinds of people at different times and in different contexts or activities.

I think that sometimes people expect me to be “fast” all the time because I can be “fast” sometimes and that is what they consider valuable in other people. But it is not possible for me to do this, usually because some of the things expected are areas of non-forte, but sometimes because other circumstances such as migraine or sensory overstimulation are throwing a spanner in my works. In these eventualities, I have experienced people getting angry as if I am doing something wrong towards them and/or doing it on purpose. I do not think this is logical, because why would I do that? But it is what happens sometimes. They might then proceed to try to rush me more. This rushing thing is understandable in a way because the people might believe that rushing someone will make the person speed up. But it is likely to have the reverse effect. More than likely: probable. Rushing is very stressful and actually causes me to be less excellent at thinking, speaking, writing, etc. Or really anything, because I am so busy trying not to melt down about the stress of being rushed that no resources are left open to try to do the thing the rushing person wants me to do more rapidly.

This is what actually prompted this column. If someone you know to be sometimes “fast” is being “slow” or something, especially if they are not the kind of person who does well with time management (so they might be time agnostic like me or anyway to some degree have issues with that) or maybe even if they are any kind of person at all, please try not to rush the person. Being “fast” or “slow” is not controllable at will and being rushed is stressful and counterproductive causing great anxiety and loss of dignity if the person contemplates and notices that you are saying how “slow” they are or such, which many of us are aware is code for 'less valuable as a person' even if it is not consciously meant that way in the moment. If you are rushing someone who is "slow" most of the time and does not usually or ever present as "fast," please do not do that either, because the least harmful assumption is that their experiences of rushing would be similar to mine. Value is not velocity, even though I can see why it would seem like that given our cultural ideas of reliability, "time is money," etc.

It is very helpful to know the person and what kinds of things cause the particular person to have glitches and anxiety or difficulty doing the things they are trying to do, if you get a chance and want to be useful in the situation and really need results. Then, do what you can to minimize the distractions or items causing pain, distress, and/or confusion and the like. This is likely to be in practice that you are basically doing the polar opposite of rushing the person or telling them to hurry up or telling them that you need it right now when in reality there is more leeway. Also if you are good with time you can create a situation where things are not last minute and in need of rushing because you have used your ability to plan ahead better to the benefit of both of you by creating a bigger span in order to do whatever it is at a more relaxed pace. People in my life who do this last thing have probably increased my lifespan. I am not exaggerating. It makes everything worlds more doable and I feel it as love. Reduction of anxiety is golden.

Thank you very much for listening to that. Also this: our humor and resilience keep us going. Please do understand that many of us don’t go around thinking and talking about how difficult things are all the time because then our lives would be focused in a direction of gacksville. Your child might be like us in this, and if so, it's a good sign for resiliency and bouncing back in the world! We are like your child.


Thursday, December 19, 2013

Talking is Hard

When I was a toddler, I wasn’t supposed to be autistic.  And so a speech-language pathologist told my parents that if they simply stopped responding to my made-up gesture language, I would start talking.
What followed was many years of me getting berated for being too shy, of everyone assuming I was just afraid to speak, and not that it was actually too hard. 
(Before very long, I was afraid to speak, though, because I was persistently misunderstood when I did.)
For a very long time, I could not reliably use spoken language to make myself understood or get my needs met.  Either because—though I could technically speak, with difficulty—I couldn’t say what I needed to, or I couldn’t get anyone to believe me when I could.
To make a long story short, I eventually found theater, and there learned the practicality of scripting—and in debate, the knack of saying things like you just expect people to believe them—and talking got a lot easier.  But never truly easy.
Communicating in spoken language always feels like playing with fire.  I wrote once in a journal that it felt like I was always speaking English as a second language, except that I didn’t really have a native language.
Talking is almost always an unnatural way to communicate for me.  It doesn’t seem to be a strictly physical issue, like oral motor apraxia, for the most part, but feels like it has more to do with difficulty in starting and stopping, and something about my sense of timing and rhythm, of momentum and inertia.  The strain of doing it too much feels very similar to that of having to multitask too much for too long.
Speaking and conversation involves some of the most complex mental gymnastics I do on a daily basis.  I’m relatively good at it because I’ve forced myself into a lot of practice under difficult circumstances over the years, not because it’s natural or easy.  It isn’t.
It’s been especially hard the past couple of weeks.  I was working on a project during which my communication abilities got pushed to their outer limits, in multiple ways, for an extended period of time.  The energy drain has taken a huge hit on my speech abilities.
It might have been a short dip—if the stress is relatively short-term and not persistent, I can recover with a single decent night’s sleep—but I just kept getting badly stressed without a chance to recover over the course of several weeks…so it’s going to be a longer dip.  It’s been a couple of weeks now, and just starting to really feel better.
I can only get away with talking as much as I do because most of the speech I have to use in the course of a typical work day is at least partially scripted, which alleviates some of the stress of real-time translation involved in using spontaneous speech.
It helps to rest it and take long breaks whenever I can.  I come home from work and don’t talk if I can help it.  I take non-speaking days to give myself a break.  On my days off, I go somewhere to read, where I won’t have to talk to anyone beyond ordering coffee.  I listen to as little human speech as possible—sometimes I don’t even turn on the radio in the morning like usual.  I put off phone calls.  If I watch TV, I use the closed captions so I can watch more than listen.  Letting myself think in pictures, patterns, and loops.  Leisurely pleasure reading.  Doing something with my hands that requires very little verbal thought.  Getting as much sleep and downtime as possible.  Staying away from multi-tasking, doing one thing at a time and letting myself sink deeply into that task…not switching back and forth between tabs in my mental browser window, so to speak.
There are times when intense practice can help to strengthen and reinforce speech abilities, but there are also times when backing off and resting is necessary to preserve those abilities.  Like any other physical or intellectual exercise, it can get easier as it becomes habitual, but it can also be pushed beyond a reasonable limit.
It isn’t distressing or uncomfortable, in and of itself, to not be able to talk.  Unless someone’s pressuring or forcing me, refusing or unable to understand my best efforts, or I’m in a situation where I don’t have any choice but to push through that boundary and keep doing it even though I know I’ve hit my limit. 
That hurts…literally hurts.  I get home sore all over, with and my ears ringing and a piercing tension headache.  I’m sick and exhausted for days afterward.
But just to be able to not speak—It’s restful.  It’s comfortable.  It’s a relief.  It’s something I need, and there’s nothing wrong with that.