Warning: strong language and Bible verses.

Introduction.

Luke 14 (New International Version):

²⁸ “Suppose one of you wants to build a tower. Won’t you first sit down and estimate the cost to see if you have enough money to complete it? ²⁹ For if you lay the foundation and are not able to finish it, everyone who sees it will ridicule you, ³⁰ saying, ‘This person began to build and wasn’t able to finish.’

³¹ “Or suppose a king is about to go to war against another king. Won’t he first sit down and consider whether he is able with ten thousand men to oppose the one coming against him with twenty thousand? ³² If he is not able, he will send a delegation while the other is still a long way off and will ask for terms of peace.

Part One.

Lynne Soraya tells a story that could have come directly from my life: she saw a sign for a library book sale and went, not taking into account just how taxing that situation might be for someone with her sensory sensitivity. She made it through and got home, then felt awful and didn't know why:

Sitting alone in the quiet house, it seemed that everything was OK – until a few hours later when I found myself getting frustrated at my computer. On edge, I suddenly felt a billowing rage overcome me. I wanted to scream and throw the computer against the wall. All this negative energy was boiling over, with no place at all to go – and simply no reason for it that I could see.

I gave myself a mental time out, took a deep breath, and asked myself what was wrong.  That’s when I made the connection. Of course…the library. I was chagrined to realize that even after decades of living with this body, I still hadn’t realized the full cost to myself of such situations, and how long after the consequences can linger, and the many ways that they can disguise themselves.

For my own sake, I should have been more vigilant, but this is what comes of spending most of my life suppressing my differences instead of trying to understand them. Sensory overload is an assault, and is experienced as such. Recovering from an assault takes more than just removing yourself from the situation. It has emotional after-effects, too. Ones that can effect not only you, but those around you.

This is what so much of my life has been like. I try to do an ordinary thing and sensory or emotional issues make it way too much. Sometimes I can do it and sometimes I give up and go home. And afterwards, there will be pain, exhaustion, and anger.

And shame.

Maybe the thing I love best about what Lynne has done is the light touch with which she indicates that part of why this cycle of sensory assault is so awful is humiliation. We should know better, but because our bodies and the situations we find them in are so unpredictable, we don't. We can't.
Sometimes, autism makes it impossible to count the cost.

Part Two.

So I hear through the grapevine that the Autism Bloggers group that this guy hurt my feelings in no longer exists.

I think this is good thing.

People got so distracted by the anger and the ugliness that this post inspired that I think they missed it was largely about counting the cost.

I was invited into that group as an autistic person, to broaden the perspective of a group made up mostly of parents. And then there was simply no effort made to establish norms that made that group accessible for autistic people. Instead, an atmosphere of competitive, mostly friendly sarcasm and snark arose.

And here's the thing-- if you don't know that aggressive sarcasm is going to disable many autistic people and make it impossible for them to participate in a conversation, you don't know enough about autism for it to be okay for you to run an autism blog. You need to shut it down and shut the fuck up.

Or, if you think that autistic people like me are "too angry" and you are willing to deliberately exploit our communicative challenges in order to discredit us or entertain yourself, then you are simply an asshole. The idea that you are an autism advocate is a joke. You are not better than anyone else who uses someone's disability against them-- the teller at the bank who tries to give a blind person a $1 bill and say it's a $20 is only one step below you. If you think taunting and shaming autistic people is a public service, you also need to shut the fuck up.

Even if you are autistic yourself.

It is HARD for me-- I have to work at it-- not to use other people's autism against them when they make me angry. It's very easy to do it-- every middle school bully has figured it out. I don't always succeed because I am not perfect, but I do try.

If you are not willing to count the cost of treating autistic people with respect, of doing the really hard work of listening to us and helping us hear you, you need not to ask us into your little shindig to begin with. If all you can do is listen to people like yourself, then focus on them and leave others alone. Don't try to shut them up just because you don't like what they have to say.

Just because I identify as autistic myself, that does not mean I understand what life has been like for people who have lived with that label in a public way since childhood. Even if I get diagnosed, the majority of my life has not been lived in the same way that someone's has if they have lived through special education. Even though my best friends have kids who have challenges much more disabling than mine, I don't know what it is like to have those challenges and I don't know what it is like to parent those kids. I try to extend my knowledge and compassion. I work so hard at this that it hurts me. I still fail. I try again.

If you think you are doing an autistic person or her parent a favor by listening to her, you probably aren't ready to hear what she is saying.

Work on yourself first.

They'll be there, when you've counted the cost.

"I think this kid's cool. I think I'm like him."

My friend Adam Bailey wrote this, in part because I asked him to. He's the guy who does the OWL comic strip, and he did the music for this cartoon we made together based on it. Adam has Asperger's syndrome. He works full-time repairing things. His wife and he have two sons, Colin, who just turned six, and Brendan, who is four. Colin has the sort of autism that makes life very difficult for himself and his family. Brendan is not autistic. When his mother recently asked Brendan what autism is, he replied, "when you need help to play."

Colin at Six

by Adam Bailey

Alyssa at Yes, That Too uses chess and checkers to explore the differences between her social communication and that of the neurotypical people around her:

So imagine that you are sitting across from someone you know to be playing chess, but you can't tell their pieces apart. Their pieces may as well all be checkers. And all you have (or all you see that you have) is also checkers. Maybe they really are chess pieces- other people seem to think that my different pieces work differently, anyways. I can't see how, though, so I can't tell you which checker is the queen and which is a pawn. Which means I can't tell how big the threat you are making or how big the threat I am making or how balanced the position looks or anything. I don't know if I just made an illegal move, because I am playing checkers and you are playing chess. It just doesn't make sense to me.
And you?
You see a chessboard, and here is this person using her pieces to play checkers.

I think this is a brilliant metaphor.  My emotional responses are simpler and less varied but they are real. 

Ariane Zurcher asks why we do not use Applied Behavior Analysis with neurotypical children:

This is where the ethical question must be considered.  This is where the “science” behind the use of ABA begins to fray.  If we really believe Autistic people (and children) deserve the same respect, are truly considered equal as those in the neurotypical population, ABA presents some real problems.   ABA can only really work if we view autism as a deficit and something that must be removed.  Only Autism is a complex neurological difference that cannot be removed.  I do not believe for a moment that there will ever be a “cure” for Autism.  It was explained to me by a neurologist that Autism is a web of neural pathways branching off and fusing producing new neural pathways, so random, so complex making it impossible to single out any one pathway allowing for a simple removal to produce a neurotypical person.

 

Actor Rod Thomas describes being part of the recent autism-friendly Broadway performance of The Lion King:

Several changes were made to the show and to the theater to facilitate this event.  There were volunteers at the front of the house with green glow lights that they would hold up to warn sensitive audience members that a loud noise (or perhaps a round of applause) was about to happen so that they might not be surprised and could cover their ears.  No strobe effects were used in the show.  Most of the loudest audio effects were taken out of the show completely.

The volunteers placed themselves throughout the theater.  As the show began, the house lights dimmed only about halfway, where they would remain throughout the show.

This was all completely acceptable.  No one was going to shoot a dirty look behind them at some disturbance.  No one was going to lean over and shush someone down the row.  There would be no ushers summoned to walk down and act as a policing force.  Today we celebrated the noises, the restlessness, the different behaviors.  These reactions were accepted as high praise - a form of applause.  Today was a day for these wonderful people to enjoy our show without worrying about disturbing anyone else.

Some wonderful autistic desires from Yes, That Too:

I want every person who has found a way to communicate to get the deciding say in their own life and care, and I want finding a way to communicate, standard or not, to be a top priority for whoever is helping those who have not yet found a way. I want people to be listened to about their own lives. I want people in charge of their own lives. I want people to realize that autistic people and other people with disabilities are not eternal children, and that trying to keep us so is harmful for everyone involved.
I want people to not fear autistic people.

 

Dilshad Ali sees her son, lying on the floor to avoid things, as the Gandhi of Autism:

Often there is an antecedent to him dropping to the floor – he has to get ready for school, he has to do work at school, he is denied taking a shower for the umpteenth time, he is asked to come inside the grocery story with me while I buy bananas, he is asked to sit at the dinner table for supper, he is asked to sit at his desk at school to do some work. Sometimes it’s a “boy discovering himself” thing. (You know, lying down, hand goes in the pants, enough said.)

And, often there is no antecedent (which leads to me to question the medical/health stuff).

Still, all the times that he planks (because it’s hipper to say plank than drop) because he was asked to do something – well I have to hand it to the boy. He has embraced the age-old, most nonviolent form of noncompliance. Gandhi could take lessons from this kid in his noncompliance. All 87 pounds of his body drops to the floor, and there is No. Getting. Him. Up. Grown men (twice and three times his size) at his school struggle to physically prompt him up. It takes at least two people doing a special lift to hoist him up.

"Conversation is okay. But friendship is better."

Paula C. Durbin-Westby's recent blog post and accompanying video about trying to talk and being unable to are important, and might be very helpful to neurotypical people who wonder what being autistic is like:

For me, not being able to speak does not always coincide with "social anxiety." I was at home, with only the dogs around. No social anxiety. I also was a bit tired all day because I had insomnia the night before, which made me less likely to be able to talk. I only have so much energy. Various things precipitate my not being able to speak: being tired, being overloaded, trying to talk when other people are talking too fast over me, reading or seeing something disturbing. Or, in the case of yesterday, because I was not speaking to anyone but working at the computer, I was "not used to talking anymore" and so had trouble getting started again. It does not take more than half a day of not talking for whatever reason before I need to sort of urge myself to take it up again.

I have had only rare episodes in my life when I have completely unable to speak.  There was a period of about two years during college when I was under a great deal of stress and would sometines completely lose speech.  I had nightmares for years after this in which I would pick up the phone and be unable to form words. More often, my speech simply gets less sophisticated as I get tired.  I become more reliant on scripts, am less likely to find the words I want to use, and interrupt myself frequently with lengthy and confusing pauses.

Some of you may have noticed that I've been in a less verbal period lately.  Writing is often very difficult for me, and I've been expressing myself in pictures a lot of the times instead.  Some people have liked this, some have hated it.  I don't know to what extent others have been aware that it is an adaptation that I have made because of my own limitations with words.