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.
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.
Melissa Stoddard's father and stepmoher have been arrested for abuse that resulted in her death at the age of eleven:
Melissa was mildly autistic, a student at Oak Park School for students with special needs who had lived with her mother in North Carolina until recently. Three months ago her parents agreed she should move to Sarasota County to stay with her father and stepmother and their five children at a home on Delft Road east of Interstate 75.
There, sheriff's officials say the girl was subjected to tortuous abuse — repeatedly strapped down to a board, or tied up in other fashions and left for hours, her mouth sometimes duct-taped to keep her from screaming. The other children told detectives Melissa was fed meals in a fenced enclosure that the children called “the corral,” sheriff's deputies say.
Misty and Kenneth Stoddard were "disciplining" Melissa:
Misty Stoddard told investigators she found Melissa unconscious and not breathing Dec. 12, according to reports. She said she assumed the child was “faking” and walked away. Five minutes later she said she checked again on the girl and then called for her husband.
After doctors found ligature marks on the Melissa's upper arms, wrists, ankles and thighs, Misty and Kenneth Stoddard admitted that they tied her up for “behavioral issues.”
Two doctors and two nurses from the Eitanim-Kfar Shaul Mental Health Center outside Jerusalem were convicted yesterday for neglecting and abusing autistic patients:
In the course of the trial, 11 instances of severe abuse and neglect of patients with autism were examined. These included forbidding a patient to talk for a number of hours each day, as a punitive measure, and withholding treatment from a patient during his epileptic seizures on the grounds that he was "bluffing." The bruises of another patient, the result of his frequent falls, went untreated, while a patient who frequently banged his head on the wall, a common behavior in people with autism, was not given a helmet to prevent head injury, again on the grounds of "bluffing."
Other patients were forced, variously, to work while standing and be kicked by staff members; to eat on the floor, under the table; to remain in urine-soaked clothes for long periods of time; and, in the case of a patient who suffered from violent outbursts, to remain in a small, unventilated room for most of the day.
Surveillance video shows bus aide Darryl Blue choking a 13-year-old autistic boy:
The police report on Blue’s arrest describes some of the audio that can be heard on the tape: Blue apparently became infuriated when the child, having wet himself, reached out to touch him.
As Blue begins choking the child with a strap attached to his safety harness, the boy “was screaming for a large portion of the video while stating, “My neck,” “It hurts,” “You’re hurting me,”’ the report states.
The child’s protests did little to quell Blue’s anger, as the bus attendant is heard saying, “He won’t be this color when he gets home, he will be raspberry.”
Hearing that comment, bus driver Chelsi Edwards laughed heartily.
Only after the choking continued for several more minutes did Edwards begin to express concern.
“You’re choking him,” she told Blue.
“It should be noted,” the arrest report states. “That this child abuse by suspect Blue went on almost the entire time on the school bus.”
You can see part of the video here. It is extremely troubling.