I recently sent out part two of my volunteer effort to spread extra autism education to departments of education in our country. Below is what I sent them:
PROBLEM AREAS OF AUTISTIC STUDENTS
As I’ve pointed out, being a student is an extra challenge for a child with autism. Not only do they need to learn a school curriculum but they are behind on social development and have to learn control of co morbid conditions like sensory issues. I have outlined some of these difficulties here.
Distractibility: Because of the lack of breakers that help us filter out information we take in around us, every little detail in the room can demand our attention like a hot strobe light. We can get distracted by a breeze, an odor, the color of someone’s shirt or pencil, the ticking of a clock or worse. We are even distracted by things across the street outside and that’s even from the far side of the room away from the windows! Add that to anything that itches or feels weird, maybe the angle of our seat that’s off a half inch today? It’s hard to pay attention to just one subject when small distractions pull at us like a tow chain on a Mack truck. It’s a flood of impulses every day and all day. Add that to Attention Deficit with racing thoughts and floods of ideas and this kid has a tough time in class.
Social Interactions: People with autism have profound difficulty with socializing. Development of social skills is impaired and we don’t recognize social cues without intense practice. It’s like learning a new language and it’s harder with the older we get. Consider it like a form of blindness, only it applies to emotions and social behaviors of others. We just don’t know them, so they may as well be invisible. This creates misunderstandings with not only other students but staff as well. Things like context in spoken words can be lost because we can be so literal that we get stuck on one way that a word can be used. That makes it difficult to view a word from it’s other uses and perspectives. Slang and sarcasm can be especially hard to understand and take extra years to learn for many of us. This can also and especially affect interactions with lessons in class.
Bullying magnets: Children with autism are highly susceptible to bullies. Because of the literal nature they are easily tricked into problem spots. Eventually, though, they start to lose trust for peers, always on the lookout for being tricked into something unpleasant. Bullies find the odd reactions of our autistic kids to be quite funny and it’s hard to just ignore it like most average children can. The experience is just too intense to ignore. Like the distractions above, only worse. If not stopped you wind up with a traumatized child, trapped in their own mind, set even further back on social development than before. It can shape the rest of their lives. Unchecked, bullying can get extremely cruel. I personally walked home from Jr High more than once a week with my face bloody. And bullying isn’t limited to the behaviors of students. Teachers bully as well. Consider the story of Alex Barton who’s teacher made him stand before his class while she had students stand up and say things they didn’t like about him. You can find his story in another section of this packet.
Meltdowns or Sensory Overloads: Sensory overload isn’t just a matter of your senses overloading you, but stress. Our autistic children cannot handle stress well. The more that stress is compounded the more likely you will have an outburst or meltdown on your hands. A lot of times this can and will cause self damaging behavior. This self damaging rage happens because everything feels so intense and causes such a flood of adrenalin that the victim literally has no idea where to put it all. The result is a flurry of raging activity that holds its victim at its mercy until there’s no energy left. It leaves a person drained and exhausted, and often injured. These episodes (compared with seizure activity) can be avoided if caught in time. They can be prevented by using calm tones and not getting forceful with the student. Most importantly, punishment adds more stress. Punishing this condition is wrong. It’s a medical condition, not fun to live with, and very hard to control. While there are ways to avoid and episode, once it has you, you are at its mercy. I have permanent nerve damage and possibly brain damage from thirty years of these episodes before my own condition was diagnosed. Now I am on medication to help keeping such stress levels and overloads from occurring. I also have a “safety zone” that I can retreat to in my home for “cool down”. Having a “cool down” place that’s friendly and clearly not a punishment could be beneficial to these students.
An important article “Calm down or else”
This is an article written for the New York Times by Benedict Carey. I believe it’s message should be taken into consideration by us all. If the rights of the student are not enough to convince us that changes must be made and we must adapt for this increasing number of students, then self preservation is the next item of evidence. Perhaps the liabilities of failing to adapt can motivate change? The cost of failure is far too high and this article proves that. Please give it your full consideration.
Calm down or else, by Benedict CareyThe children return from school confused, scared and sometimes with bruises on their wrists, arms or face. Many won’t talk about what happened, or simply can’t, because they are unable to communicate easily, if at all.
“What Tim eventually said,” said John Miller, a podiatrist in Allegany, N.Y., about his son, then 12, “was that he didn’t want to go to school because he thought the school was trying to kill him.”
Dr. Miller learned that Tim, who has Asperger‘s syndrome, was being unusually confrontational in class, and that more than once teachers had held him down on the floor to “calm him down,” according to logs teachers kept to track his behavior; on at least one occasion, adults held Tim prone for 20 minutes until he stopped struggling.
The Millers are suing the district, in part for costs of therapy for their son as a result of the restraints. The district did not dispute the logs but denied that teachers behaved improperly.
For more than a decade, parents of children with developmental and psychiatric problems have pushed to gain more access to mainstream schools and classrooms for their sons and daughters. One unfortunate result, some experts say, is schools’ increasing use of precisely the sort of practices families hoped to avoid by steering clear of institutionalized settings: takedowns, isolation rooms, restraining chairs with straps, and worse.
No one keeps careful track of how often school staff members use such maneuvers. But last year the public system served 600,000 more special education students than it did a decade ago, many at least part time in regular classrooms. Many staff members are not adequately trained to handle severe behavior problems, researchers say.
In April, a 9-year-old Montreal boy with autism died of suffocation when a special education teacher wrapped him in a weighted blanket to calm him, according to the coroner’s report. Two Michigan public school students with autism have died while being held on the ground in so-called prone restraint.
Michigan, Pennsylvania and Tennessee have recently tightened regulations governing the use of restraints and seclusion in schools. California, Iowa and New York are among states considering stronger prohibitions, and reports have appeared on blogs and in newspapers across the country, from The Orange County Register to The Wall Street Journal.
“Behavior problems in school are way up, and there’s good reason to believe that the use of these procedures is up, too,” said Reece L. Peterson, a professor of special education at the University of Nebraska. “It’s an awful combination, because many parents expect restraints to be used — as long as it’s not their kid.”
Federal law leaves it to states and school districts to decide when physical restraints and seclusion are appropriate, and standards vary widely. Oversight is virtually nonexistent in most states, despite the potential for harm and scant evidence of benefit, Dr. Peterson said. Psychiatric facilities and nursing homes are generally far more accountable to report on such incidents than schools, experts say.
In dozens of interviews, parents, special education experts and lawyers who work to protect disabled people said they now regularly heard of cases of abuse in public schools — up to one or two a week surface on some parent e-mail lists — much more often than a decade ago. “In all the years I went to school, I never, ever saw or heard of anything like the horrific stories about restraint that we see just about every day now,” said Alison Tepper Singer, executive vice president of Autism Speaks, a charity dedicated to curing the disorder.
The issue is politically sensitive at a time when schools have done a lot to accommodate students with special needs, and some have questioned whether mainstreaming has gone too far. “Some parent organizations, they’re so grateful to the schools that their kids have been mainstreamed that they don’t want to risk really pushing for change,” said Dee Alpert, an advocate in New York who reports on the issue in the online journal, specialeducationmuckraker.com.
For teachers, who have many other responsibilities — not least, to teach — managing even one child with a disability can add a wild card to the day. “In a class of 30 to 35 children, there’s a huge question of how much safety or teaching a teacher can provide if he or she is being called on to calm or contain a student on a regular basis,” said Patti Ralabate, a special education expert at the National Education Association. “The teacher is responsible for the safety of all the children in the classroom.”
The line between skillful conflict resolution and abuse is slipperier than many assume. Federal law requires that schools develop a behavioral plan for every student with a disability, which may include techniques to defuse the child’s frustration: a break from the class, for instance, or time out to listen to an iPod.
But in a hectic classroom, children with diagnoses like attention deficit disorder,anxiety or autism can seemingly become defiant, edgy or aggressive on a dime — and the plan, if one exists, can go straight out the window, investigations have found. Even defying a teacher’s instructions — “noncompliance” — can invite a takedown or time alone in a locked room, they found.
In an extensive report published last year, investigators in California documented cases of abuse from districts in the San Francisco Bay Area, the suburbs of Los Angeles and in the rural northeastern part of the state. During the 2005-6 school year, an 8-year-old with a diagnosis of attention deficit disorder and mild mental retardation was repeatedly locked in a “seclusion room” alone, adjacent to the classroom — at least 31 times in a single year. His parents heard about it from another parent, who saw the boy trying in vain to escape.
In another school, a teacher held a 12-year-old with a diagnosis of attention deficit disorder “face down on the floor, straddling him at his hips, and holding his hands behind his back,” according to the investigation, which was done by California’s office of protection and advocacy. Congress established such offices in each state in the 1970s to protect the rights of the disabled.
Leslie Morrison, director of investigations at the California office, said parents often complained about such episodes but were usually reluctant to cooperate with an investigation. “They’re afraid the school will retaliate,” she said.
And the children, who have an array of psychiatric diagnoses, from attention deficit to autism, often do not understand what is happening or why. “They just think they did something wrong and are being punished,” Ms. Morrison said. “Many of them are not verbal at all and can’t even tell their parents.”
In Tim Miller’s case, school logs obtained by his father illustrate how quickly a situation can escalate, regardless of behavior plans. In one entry, dated March 18, 2005, a teacher wrote: “Tim was screaming down the hall. He ran past me and began to double his fist to punch the locker. At this point I scooped my arm underneath his and directed him into my room.”
After the boy continued to struggle, this teacher and another “laid him onto the mat, where he was held approximately 20 minutes,” the log said.
Tim, now 15, graduated from the school last year and in June completed his first year of high school, excelling in a variety of mainstream classes without incident. In a telephone interview, he said he no longer thought much about the takedowns. “I just think now that they were idiots to do that,” he said. “I remember telling my mom to pray to God that they wouldn’t keep doing it, and wishing the other kids would see what was happening.”
When a school has a so-called zero tolerance approach to bad behavior, it often does makes a public spectacle of controlling a child’s behavior, said several parents interviewed for this article.
Kathy Sexton, who lives near Dallas, had to pick up her 11-year-old son, Anthony, who has a diagnosis of attention deficit disorder, at the police station, after school staff members had the boy hauled away in handcuffs for cursing at a teacher.
“I didn’t hear about it for hours and had to go get him at jail,” Ms. Sexton said in a phone interview. “He was hysterical, obviously, and he’s had his ups and downs since then. It’s hard to know what a thing like that does to a child that age.”
Several companies offer programs to teach so-called de-escalation techniques to school staff, and a scattering of schools have developed model programs to pre-empt confrontations, and defuse them when they happen. But experts say that until policymakers and schools adopt standards, on exactly which techniques are allowed and when, children with behavior problems will in many districts run the risk of being forcibly brought into line.
Dr. Peterson, the Nebraska professor, illustrates the challenges by citing two recent cases in Iowa. In one, the parents of an 11-year-old who died while being held down called for a ban on restraints; in the other, parents charged that a school failed their son by not restraining him. The boy ran away and drowned.
“It’s damned if you do, damned if you don’t,” Dr. Peterson said, “and it reflects the level of confusion there is about this whole issue.”
End of articleI hope that you can see just how serious education for staff can be. Lack of knowledge for proper handling leads to desperation to make a child comply. That leads to dangerous practices. Practices that put your districts at risk. It’s far less expensive, especially in the long haul, to make sure that all staff are knowledgeable and sensitive to these special needs kids. Granted laws were recently passed on the federal level against restraint and seclusion but we all have an important part to play. We all must do our part to make sure the proverbial ball doesn’t get dropped anywhere for the sake of all our children. The answer is education.
