Tasia writes wisely about her son Nick, whose science teacher is worried that he does not socialize more at school:
I told his teacher that there should continue to be zero pressure on Nick to connect socially in school. Nick uses school for academics only. Everything that does not lead to him getting a diploma we have eliminated—no homeroom, no assemblies, no pep rallies, no non-required electives. His custom school day uses up way fewer tokens than a regular day would, which allows him to thrive at school and get his education. If we added in social expectations, he would be overwhelmed.
She knows that Nick can interact socially when he has the resources:
Yesterday we were in Vernonia, a small town about an hour’s drive from home with a lake that has just been stocked with 3,000 trout. Nick had been planning this day for weeks, and while we waited for Karla to meet up with us, Nick connected with a handful of boys who were out here for the same reason. They talked about the best spots on the lake to fish, what kind of bait they were using, and who had caught what so far. None of them knew each other but they were instant fishing buddies. The old coots who are always around advised the young ones, and the young ones heeded them with respect. I watched him interact and wondered if his science teacher would even recognize him. The awkward, seemingly antisocial kid who ignores his classmates was demonstrating stellar social skills to anyone holding a fishing rod. This happens every time he goes fishing and there are other people around.
So what’s going on here? Does my autistic son lack social skills or does he not? The answer is that context matters. Socializing costs a lot of tokens. When Nick is in a situation that is already difficult for him, he won’t have those tokens to spare. He will need to focus on what really matters to succeed in that situation (in science class, success = learning science). When he’s engaged in a special interest like fishing, he is rebuilding his token supply, so he has plenty to spare for non-necessities like socializing. Because he does crave social contact, connecting with his fellow fishermen at the lake is a priority, unlike making friends in school.
After an autistic boy punched his kindergarten teacher in the nose, administrators at Franklin Elementary School in Logansport, Indiana, contacted the police, who charged the boy with battery:
“We had a teacher that was struck in the nose by a student,” said Franklin principal Hayley LaDow. “A police report was filed. That police report has been turned over by the police to the prosecuting attorney and that prosecuting attorney is the one that determines whether charges will be filed.”
The boy's mother, Brandi Velasquez, feels that her son's needs have not been taken seriously:
“He’s just thrown into a regular kindergarten class right now,” said Velasquez. She said she has requested and been denied one-on-one instruction for her son.
The boy has escaped from school grounds before, she said, and at other times has gotten aggressive. The school has a special code for him, she said, “Code Bulldog.” However, she added that Wednesday was the first time he’s hit a staff member.
This morning, I read a cluster of important essays about compliance and autism.
When we stress compliance too much, we can put autistic people in danger. Like the author of this piece, I was sexually abused in childhood:
Children like yours — children like I was — are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.
Even something so seemingly simple as the constant pressure to smile. Everybody wanted me to smile. And I was told that I was such a pretty girl and ought to smile. And I was told that I was so pretty when I smiled. And it was so important to everyone that, after a while, I sat in front of the bathroom mirror practicing faces, trying to find the muscle-feeling that would make a smile. I practiced and perfected until I could make a smile on demand. I worked hard until I had a smile that made everyone happy and got them to quit bothering me. And now, when I am afraid that I am being a bad girl, when I am resisting what someone else wants, when I am feeling the pressure to be a rag doll again, to be whatever and whomever I am being asked to be, I put on that smile as a shield to protect the tiny scraps that are left inside me as I give in and give up who and what I am because the pressure to comply is so huge and so uncomfortable. And because I was never allowed to say no, never allowed to own myself, never allowed to not-want and still be a good-girl.
You do not want your child to grow up to be like me.
And you do not want your child to grow up like me, either.
You don't want to teach your children that who they are is wrong and that they have to pretend to be something they are not in order to be worthy of inclusion in the world.
I have been arguing that I don’t want to see potty training as a focus for Evie at this point because I don’t think she is developmentally ready and because I REALLY want the first, biggest, and if need be only priority to be helping her to communicate basic needs.
One of the arguments provided by one of her educators was that by wearing underwear instead of diapers, her classmates would not feel she was so different.
I can’t believe I even kept my hat on after hearing that one.
Evie IS different. She will ALWAYS be different. And if school’s answer is to make other kids feel more comfortable about Evie’s differences by pretending she is something she is not, then I don’t even know what to say. I wonder how comfortable the kids will feel when Evie pees through her clothing while sitting next to another child. That ought to make her some friends.
Can’t we teach kids to honor differences? Probably not, when as adults, we are so focused on hiding them away.
I believe in therapy, support, and education for autistic people. I agree that these are not our only choices:
- Provide intensive therapies to teach an Autistic person "skills" that are really more like "acting neurotypical"
- Do nothing.
The idea that there are only two choices is reflected in comments people make about how compliance based therapies are necessary . No, they aren't. Teaching is necessary, education is necessary, learning is necessary. Compliance-based therapies and compliance in general are not. People only think they are because either compliance is convenient or because they do not realize that compliance in the sense it is used in most autism therapies is not a prerequisite for teaching or learning and can inhibit education! Yes, really. Some people consider education to be learning how to learn and think, and that is not something that can be taught through compliance.
After I read those three posts, I read what a nurse says is the greatest regret her dying patients have had:
I wish I'd had the courage to live a life true to myself, not the life others expected of me.
"This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made. Health brings a freedom very few realise, until they no longer have it."
It takes extraordinary courage for autistic people to lead lives which are true to ourselves. Too often, we are taught that we succeed only by doing what others expect of us, that the way we feel does not matter. I know that people teach us those lessons in an effort to keep us safe.
There have to be ways to keep us safe that do not result in us regretting our lives.
If they don't exist yet, we have to find them.
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.
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.
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.
If we don’t pay for treatment for people with mental illness, that doesn’t mean we won’t eventually pay for people with mental illness. The difference is, instead of paying for health care, education, housing, and other programs that meet real needs on the front end, we pay for the disastrous consequences on the back end: police, jails, prisons, and long-term institutionalization. The largest provider of mental health care services in the world is the US correctional system, and many people with serious mental illness only receive treatment for their conditions when they are incarcerated. People who could live successful lives with appropriate supports instead become homeless, end their lives, or use illicit drugs to endure the relentless and unbearable symptoms of their illnesses between stints in jail.
Almost no family has all the resources necessary to meet the needs of a person with serious mental illness so we have to do it together, with social programs. We’re are paying, and we’re paying big, but we’re spending our money on the wrong end. My insurance company resists paying for treatment that Carter needs now, but taxpayers will insist that someone pay for a prison cell if he hurts someone in the throes of a psychotic episode someday. Republicans don’t want to fund the expensive special education programs that kids like Carter require, but we sure as hell want cops to keep homeless people from hanging around the entrances to our favorite restaurants.
Almost all of us invest time and money into toothbrushes and regular dental care because we know that it’s cheaper and nicer than having rotten teeth falling out of our heads. We pay the people at Jiffy Lube to change our oil every 3,000 miles because we know it’s far less expensive than letting the engine seize. We hang smoke detectors in hour homes because we don’t want to be burned to death in the night. We have the good sense to recognize that some prevention in the beginning, even if it’s inconvenient and expensive, is almost always easier and cheaper than dealing with the disaster that will come later if we don’t.
Classrooms are cheaper than cops, trials, and prison cells. A hospital bed for a month at the beginning of a psychiatric crisis makes lots more sense than a jail cell for a year after a full psychotic break. This argument about whether or not to pay is nonsense; we are already paying, but we’re throwing our money down an immoral and inhumane suck hole. If the notions of morality and humanity don’t mean much to you, consider this: the return on our investment could be infinitely better.
Judge E. Gary Early has ordered that Fruitland Park Elementary teacher Jaclyn Ockerman should get counseling and be returned to the classroom after she was accused of slapping and roughly treating autistic kindergartners:
Ockerman was accused by several teaching assistants of roughhousing her students last school year. They said they saw Ockerman slap students' hands, but only one formally reported the acts in May. In June, Superintendent Susan Moxley tried to fire Ockerman, but the teacher contested the allegations. Ockerman, who had no previous complaints, has been reassigned to a non-classroom post.
The order says an assistant saw the teacher slap a student on the hand when he took another child's toy. Another noted Ockerman slapped a child who was having a "tug-of-war" over a bin.
The slapping incidents, however, were "isolated and mild" and not harmful, Early wrote. Allegations she squeezed children's faces stemmed from an incident in which a student was crying and Ockerman grabbed his face to make him look at her. Another assistant said Ockerman had yanked a student through a class doorway, but the allegations couldn't be proven. Early instead found that Ockerman's behavior didn't warrant her termination.
The district is still fighting to fire her.