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.

John Elder Robison, the autistic person on the science board of Autism Speaks and one of three autistic men on the Interagency Autism Coordinating Committee, begins his big picture consideration of where the autism community is and where it needs to go in a familiar place-- anger:

What have we done for our community?  Angry parents direct that question at the IACC, the CDC, NIH and Autism Speaks every day.  They say we’ve spent hundreds of millions in research, and talked about all our great accomplishments in research, yet the lives of the autistic people around them are not one bit better.  How come?

I’m beginning my seventh year as an autism advocate – whatever that means – and one thing that’s clear is that the dissatisfaction expressed by members of our community is just getting louder.  The inescapable conclusion is that the organizations that purport to be here to help are not delivering whatever it is we want or need.

I want to respond to John Elder's piece in some depth soon, but first I want you to read his arguments without my comments on them, because what he has to say is smart and important. There's a lot I agree with and a lot I disagree with, even in his final summary and call to action:

1 – We have developed a number of promising therapies – some medical, some behavioral, some environmental – that seem to offer meaningful help to certain autistic people.

2 – We see the promise of new technologies like tablet computing/apps but we’ve left most development in the hands of private companies, which leaves the resultant products unaffordable as things stand today.

3 – History shows that some of the greatest discoveries come from basic research and I believe we must continue in that direction.  At the same time, we can’t overlook the needs of people today.

4 – The reason most new therapies are not covered by insurance is that there is not a strong body of evidence that they work, nor are there standards for how they will be delivered. Consequently, insurers wriggle off the hook saying they don’t know what they’re paying for, or if it will work.  That’s why there’s such a critical need to fund studies that build evidence, and develop standards for delivery.

5 – Changing the way our education, legal, and social systems accept, engage, and help autistic people is going to be a massive and expensive effort; one that is just now beginning.  It’s even more critical as we begin to understand the true size of the autism community (including the large numbers of previously undiagnosed or misdiagnosed adults.)

Please read it and think about it.

Then let's talk.

Ariane is right, it's like this:

Try to imagine how you'd feel if you mustered up the courage to reach out to another human being only to be shunned, teased or told to go away. Imagine what it would be like to want to have friends and play dates and sleepovers, but you had none. Imagine trying to make friends, but no matter how hard you tried, none wanted to spend time with you, and you didn't know why. What if your attempts to be friendly were seen as acts of hostility? What if you punched someone on the shoulder because you'd seen friends do that and they always laughed, but when you did it, you were taken to the principal's office, reprimanded and threatened with expulsion. How would that make you feel? How about if you joined in a conversation, but the minute you said something, everyone stopped speaking and stared at you with looks of surprise, or worse, annoyance and even anger. How would that make you feel?

Steve is right, it's like this:

Do you know how it feels to be excluded? I do. When I was a kid I would hear the other kids talking about parties or events that I wasn’t invited to. As an adult, I still have people around me doing the same thing. They talk about how they had some fun, did some event or get together that I was never invited to do. Not too long ago someone was talking about how they took an acquaintance out on their boat on a fishing trip and even though I have known them much longer, I have never been invited to go with them. Is it because I am Autistic? Do they care that I feel ignored and excluded?

There are things that hurt me so much that it hurts me to share them with you. Here are three of the ones that are so important I need you try to read them anyway, sometime when you can.

1) Disabled-- and Handcuffed at School by S.E. Smith

Smith lays out exactly why schools are getting more and more dangerous for students with autism and otehr disabilities-- and why current trends will only make them worse:

Simply put, districts also need more trained staff on hand. Teachers handling mainstreamed classes require support to balance the needs of their disabled and nondisabled students and to make sure that every student is provided with the educational material and assistance he or she needs. Without staff support, students inevitably begin to fall through the cracks, and one consequence of that can be an increase in disruptive behavior. Overburdened instructors may fail to identify the warning signs of a tantrum or meltdown, for instance, making it difficult for them to intervene early on – before things have escalated beyond their capacity to deal with them. And even if they do spot a troubled student who needs more personalized attention, that level of engagement can often be impossible to provide in a classroom with 25 or more additional students vying for their attention. Trained staff can help mediate situations like these.

Another issue that came up again and again with educators who spoke to AlterNet was the impact of our increasing reliance on standardized testing to measure performance in the classroom. High-stakes testing creates a highly pressured environment for teachers, who are forced to focus on the tests rather than on their students’ learning needs – especially if the teachers don’t have tenure or secure positions in their districts. All students, regardless of disability status, suffer in this environment, where teachers are asked to view students not as individuals, but as aggregate test scores.

Bottom-up educational reform often focuses on teachers and blames them for the failures of the educational system. But this approach largely ignores the structural issues plaguing many districts as they fight for funding, cut student and staff services, and live in fear of the latest test results and what they mean for the school’s future. For students with disabilities, these issues are further complicated by the need to access a functional educational environment where they will be safe from harm and not at risk of run-ins with the police. In this educational landscape, it’s hard for disabled students to learn, let alone realize their full potential.

2) Letters from inside the Judge Rotenberg center

Lydia Brown recently published two letters from people with personal experience inside the Judge Rotenberg Center, a school where students are punished with electric shocks.

From a former student:

     We are at the mercy of guardians and judges. When I was brought to court to be approved for the GED, I was not told where we were going or why. I was brought into the courtroom wearing a helmet and restraints on my wrists and ankles.  I was not questioned by the judge.  All he had to go on was my appearance in those restraints, testimony from JRC officials, and charts of provoked behaviors. These behaviors came from being forced to sit in isolation with a straight upright posture, in the center of a hard restraint board, day after day, week after week, for two months. I received no real help and no socialization. For those two months I was not allowed to sit in a chair, at the classroom or residence. I was to sit on the board. Also, JRC provoked me by not allowing me to shower during those two months. Instead of showers, I was bathed tied to a restraint board, naked, while staff washed me, putting their hands all over me. All in front of cameras, where Monitoring watched, including men.  Being tied on a restraint board, naked, with my private areas exposed to the staff in the bathroom and the cameras was the most horrible, vulnerable, frightening experience for me. I would scream out “rape, rape!” And these were recorded as major behaviors for me. When I first arrived at JRC, I was immediately subjected to humiliation and provocation by them forcing me to wear a diaper. I in NO WAY needed or have ever needed a diaper as an adult. I am completely independent in all toilet and hygiene skills. And they knew that. I had NEVER worn a diaper up until that day, except of course when I was a little baby. And that is exactly how they made me feel, like a little baby. I was embarrassed and confused and angry. I took that diaper off constantly. When I would take the diaper off they would mark that down on my chart that they would later show the judge as destructive behavior. I would often get restrained on the 4 point board for taking off the diaper and fighting staff not to make me put it back on. In these ways and more, JRC provoked many behaviors in me that were shown on a chart to the judge. There is no way the judge could know what was provoking my behaviors. JRC told the judges that their program was the only thing that could help me. That theirs is the only last resort treatment.

From a former teacher:

I can testify to the absolute horror of Behavioral Rehearsal Lessons (BRLs) where a student, in front of his 40 classmates, was left in a restraint chair (including cuffs to his arms and legs and a strap to his waist), in a very hot and thick restraint jacket, and in a restraint helmet, altogether at the same time, all day long, so that he would be helpless to defend himself during BRL surprise-attacks that occurred three to five days per week.  A staff would rush in at various times during the school-day, yelling and screaming while entering the room and racing to the student, and place either a plastic knife or a metal spoon to the student’s mouth, and yell, “Do you want to swallow a knife?  Do you want to swallow a knife?”  The staff would hold the plastic knife to the student’s mouth in a life-threatening manner, the student would scream loudly as though it was his last breath, and another staff somewhere in the room would push a hidden remote control button to shock this student who was already physically helpless to move his body an inch in any direction while being attacked. 

Having worked extensively with this student, mostly at the school and also at the student’s residence, I can testify that a long time prior to the incident when this student swallowed a small X-acto knife blade, this student was very proud of his wooden models and knife kit that Dr. Matthew Israel had personally arranged for him to have.  This was after a long history of the student (like many other students with disabilities) swallowing sharp and inedible objects.

 

Brent Mack, a 27-year-old autistic man from Perth, Australia, has been sentenced to twenty years in prison for killing his mother, Ah Bee Mack. Her body has never been found. Brent claims she killed herself, and he hid the body because he promised to keep the suicide a secret.

Justice John McKechnie found Mack had killed his mother to benefit financially from the lucrative real estate assets she had inherited only months before her death from her late husband.

After his mother's death, Mack moved almost immediately to start siphoning hundreds of thousands of dollars out of her accounts.

Mack kept his head bowed and eyes closed through his sentencing in the Supreme Court of WA on Friday.

Psychological and psychiatric assessments of Mack had ruled out his autism as a factor in the murder.

"Your autism does not explain your crime let alone excuse it," Justice McKechnie said.

But he did find Mack had lived a solitary and sombre life due to his condition, that he had been the target of abuse from his elderly father and incapable of forming relationships.

"You are a very damaged young man," Justice McKechnie said.