11:20pm June 1, 2013

Does anyone have good autism cards?

They have to be for use by actual autistic people, not “my child has autism” stuff. I’m an adult so it can’t be a child thing. I don’t have Asperger’s so the card needs to specifically mention autism – I’d hate to contribute to the myth that the only autistic people who can use words to communicate have AS, and that’s what using a card focused specifically on AS would do if I used it

They have to cover the fact that I might appear rude without intending to. Possibly including things like body language, bluntness, lack of conversational rhythm (interrupting), lack of understanding of social hierarchies, appearance of disrespect that isn’t really there, being overly wordy or unable to use words at all, not responding, startle response, appearance of emotions that aren’t actually there, saying or doing things that would be rude if a nonautistic person said them but aren’t at all intended that way when I say them, etc.

It would be best if it came from somewhere official, but it’s okay if it doesn’t, or if it’s just words for me to print out and laminate myself.

I badly need this. I keep encountering people in the healthcare system who think of me as rude when I’m not, think I’m being hostile or argumentative when I am not, think I’m angry when I’m not, etc.

Some of them are honestly confused, some of them are hostile themselves with a chip on their shoulder about having to treat me, and probably beyond hope. I hope that a card would help the confused ones understand. And for the genuinely hostile ones, a card would be documentation for any bystanders that I informed them about the effects of being autistic and that they are refusing to treat me right because of a disability.

These situations happen the most often when I am highly overloaded and struggling just to string words together and understand their words, and have no energy left over to modulate social interaction. The worst one recently happened just after I began to be able to type again rather than just use the picture symbols on Proloquo2go. (I had been under anesthesia and a lot of strong medications that addled my brain.) I got accused of interrupting, hostility, and disrespect, when I intended none of the above. He told me that I wasn’t treating him like a human being – when he was the one not treating me as human when I was just struggling to communicate at all. I even got told that my computer’s tone of voice sounded rude (I type to communicate). I have little hope that this particular man will ever see the light, but if I had handed him a card explaining things, he would have no excuse to treat me that way anymore, and any observers would understand that something was going very wrong with the way he was treating me.

These are genuine problems that I have had all my life. My body language and facial expressions are very hard for nonautistic people to read. I have a good deal of trouble putting things into words in real time, and can become overly wordy or underly wordy as a result, or choose words that seem rude to other
people. I have trouble following the rhythm of conversations and can seem to interrupt people because of that. I don’t understand social hierarchies and get in trouble for not showing deference to people who believe me to be beneath them. Sometimes I can’t respond to people at all, or can only respond in ways that appear hostile if you don’t know me well.

I know there are autistic people who think that autism can’t cause the appearance of rudeness, and that autistic people who talk about these things are just using autism as an excuse to be nasty to people. They couldn’t be more wrong. I try to respect people, I try to be nice, but my language and body language differences frequently result in horrible misunderstandings. Sometimes even misunderstandings with other autistic people! Some of these misunderstandings can be life threatening, because I have complex and severe medical conditions and doctors often want deference and other social signals that I’m incapable of. I sometimes get substandard treatment because of that, when it’s not just because they think my life isn’t worth anything because I’m disabled (which also happens frequently).

So I need some way of documenting and responding to people who treat me as if I’m being rude on purpose. I don’t need things that refer to me as having bad behavior or misbehavior. I need things that explain that any appearance of rudeness and disrespect is not intentional, with a brief explanation of some reasons why I can appear rude. This documentation will at minimum help bystanders understand when I’m being treated unfairly, and at maximum help the person I’m talking to understand that I’m not trying to be rude to them.

But I’m having real trouble writing such a card. I used to have a whole collection of cards for different social situations regarding autism, that I carried on a key ring attached to my belt loops. But I no longer have such a thing.

It would be ideal if I could find multiple cards, not just ones about rudeness. Also ones about difficulty communicating in general. Ones about my reactions to sensory input, and movement differences, and things like that. Things that explain why I may appear unresponsive or agitated but may understand everything around me. Things that explain that I may have difficulty understanding basic things around me. Each one for a different situation.

Possibly pointing back to a website with decent information about autism. By decent information I mean stuff that goes beyond calling it a social disability. Because to me autism is primarily sensory, cognitive, and motor. Social difficulties are an unfortunate but very peripheral outgrowth of those things. And social difficulties are not just on the part of the autistic person, they are a product of the interaction between two people with very different neurologies. So websites with descriptions of autism that focus primarily on social deficiencies would miss the point entirely, even when the card I’m using is for specific social interaction difficulties.

I’ve thought of ordering the card from the National Autistic Society in the UK, but it’s very long and I’m not sure people would read it. I’d prefer information broken up into separate cards for separate situations. I am so heartily sick of pouring every ounce of energy into communication and getting nothing but hostility and disbelief in return. It’s exhausting and also dangerous given the situations it often happens in for me. Most of my interactions are with medical professionals who are making decisions that could be life and death, and medical professionals are profoundly affected by their own assumptions about the personalities of their patients. I don’t have a personality defect, I have communication problems, and it’s very frustrating when I give everything I have and get nothing but gross misunderstanding in return. Sometimes it’s beyond frustrating, it’s genuinely traumatic to have this repeated over and over again. And there’s nothing I can do to change my language or body language differences, they are too rooted in sensory, motor, and cognitive differences that go down to my core. Also sometimes I appear agitated because I’m very overloaded and people mistake it for anger at them. Or I use a sort of agitated energy in order to force my body to obey me and move the way I want and get words out, and people take it personally (it’s actually a thing, lots of people with parkinsonlike movement disorders have to do things like that, I was so happy to hear of it in a lecture by an autistic guy with atypical Parkinson’s).

Also it would be nice to have a card for etiquette when talking to people who can’t speak. Because I get into a lot of situations where people don’t know how to deal with talking to someone who uses a keyboard to communicate, sometimes by typing and sometimes by pressing on picture symbols. I’ve even had doctors refuse to treat me because communication took too long. Which is bad when the doctor is a urologist who is supposed to be preventing constant UTIs caused by a spastic urethra. You get the idea.

It’s bad enough to face disability discrimination in medical care. I recently had doctors actually decide I would be better off dead than getting a feeding tube that saved my life. That wasn’t because I seemed rude, it’s because they look at me and only see “retard”, either consciously or subconsciously. (When I use that word I am not referring to a diagnosis or a real thing, but a malicious stereotype in people’s heads of a sort of unperson.) But when I seem rude or have other communication difficulties, that only gives them more excuse to deny me care. It’s not fair but it happens to autistic people all the time – it also happens to people who really genuinely are rude or hostile. But I am not rude or hostile and I need ways to document and communicate what is really happening in these interactions. The interactions always happen too fast for me to explain everything. And I end up feeling trapped and cornered and terrified. And somehow my terror gets interpreted as more disrespect. It’s a vicious cycle and I need a way to break it with those willing to listen, and document what is going on for people unwilling to listen.

Oh also I need to probably have an explanation for why my communication can be really repetitive. When I was in the emergency room recently with a clogged feeding tube, one doctor started complaining to another doctor about how I “went on and on and on and on and on” about my medical needs in the situation. The reality is that repetitive behavior and repetitive communication is a normal part of autism. I can’t control it. At all. For a wide variety of reasons. No more than I can control stimming when it happens. And again doctors opinions about my personality profoundly affect the care I receive, or don’t receive. This hospitalization I was actually (in my opinion and in the opinions of observers) probably punished for my communication style. In ways that increased my pain and overload and communication problems and muscle weakness. People don’t take me seriously. They do things to me they wouldn’t do to a nondisabled person, or even to many disabled people with more standard social skills.

I know it’s impossible to control the behavior of these people, especially the ones who think of me as a worthless unperson who deserves to die. But I need a way to show people that what is happening is actually discrimination, not a natural response to a rude disrespectful person. And having cards would be a start.

And as I said, cards for other situations besides misperceived rudeness would be a bonus too. There are lots of situations I could use cards for. I’ve just lost all my cards and am not good at writings short summaries of things like this. And I’m nearing the end of my rope in dealing with people who become hostile to me because they assume I am being hostile to them when I’m just being autistic.

And no. This is not about excuses to be a jerk. Don’t even go there. I do everything I can to be good to people but for some people everything I can do isn’t enough. These are genuine communication problems.

Also I’ve noticed something odd over the years. There is a specific group of people who, when reading my writing (and my word communication is almost entirely typing at this point in my life, with extremely rare exceptions), automatically see me as angry and hostile. Even if I’m feeling happy and friendly and calm. No matter what I am writing about. Some of them are just bullies looking for a fight, but some of them seem to genuinely misread my intentions. And I can never figure out what to do about that. Often they know I’m autistic, some are autistic themselves. They just see a tone in my writing that doesn’t actually exist, and that nobody else seems to perceive. They’re not the majority of people by any means, but interactions with them are always needlessly stressful.

I know that I can’t change how people think of me, and that for the most part people can think what they want. But I need something to do in situations where there’s actually a chance that what they do will affect my life greatly.

I’m so exhausted from typing this that I’m seeing double. My body is still messed up from transitioning back and forth to different seizure meds, going off lorazepam, the anesthetic they gave me a couple days ago, being taken off Mestinon while in the hospital for no good reason at all, and the stress of being in the hospital. But I need to figure out what I can do. This post is a good example of how when I get language problems, one possible response my brain has is actually to become extremely repetitive and verbose. Which is not good for writing autism alert cards.

I want the cards to have sufficient information to explain things in a basic way to people, while at the same time being succinct enough to fit on a card. The card can be around 5 by 7 inches or smaller, possibly slightly larger if necessary. But short enough that a person will actually read it when handed to them.

Other situations for cards include overload and shutdown and oh geez lots of things I can’t think of because fuzzy brain is fuzzy.