From Chapter Two
[Functioning] labels attempt to create a clear distinction, where none exists. Any one autistic person may be “high-functioning” in some areas of life, and “low-functioning” in others. Consider this child:
“My ‘high functioning’ child is not yet potty trained and still has to use diapers. . . Wait, does that make her ‘low-functioning’? I get confused because she is also reading ‘The Hobbit”, which might make her ‘high-functioning.’ It’s almost like I was right when I said that functioning labels are arbitrary, ableist and totally made up.”
Adults also vary in their ability to function, often depending on the situation:
“If the situation I face is needing to figure out how to get from point A to point B by public transit, I am in good shape. I’ll function GREAT. If the situation is a crowded gathering where I need to politely interact with people, I might manage the length of the party (or I might not.) Then I go home and shut down. My functioning in that area is kind of cruddy.”
As with sensory issues and the ability to speak, the ability of a person to live autonomously can change over time. “High-functioning” autistics with stressful jobs or difficult personal relationships may eventually suffer from “autistic burnout;” they lose, at least for a time (and sometimes permanently), the ability to live independently. They can no longer do their jobs, visit the grocery store, remember to feed themselves, perhaps even speak as they once did. How closely, then, do functioning labels, usually attached to people in childhood, actually reflect their ability to function as adults?
From Chapter Five
According to the U.S. Department of Education’s Civil Rights Data Collection for 2017-2018 (the latest period for which full data is available) 70,833 disabled students were physically restrained, 27,538 were secluded, and 3,619 were subjected to mechanical restraints across the country during that school year. But this is certainly an undercount, perhaps a serious one. Many school districts don’t collect the relevant data, or they fail to deliver it to the Department of Education as required. Even when they do, the information provided may not be accurate. For example, the internal records of Cedar Rapids Community School District in Iowa showed that 1,400 restraint/seclusion incidents occurred between 2012 and 2014. But not one was reported to the U.S. Department of Education, prompting Iowa’s two senators to launch an investigation. Likewise, Fairfax County Public Schools in Virginia reported zero cases of restraint or seclusion during the 2015-16 school year. Then, following a journalist’s investigation of the records, the number of cases suddenly rose to 1,700 during the 2017-2018 school year. According to a 2019 study of schools in Illinois, a special education cooperative covering two counties in northwestern Illinois reported 441 cases of restraint and seclusion in the preceding school year; investigative reporters discovered the real number to be more than two times higher. In the Department of Education’s CRDC survey for 2015-2016, roughly 70% of all school districts nationwide reported zero cases of restraint and seclusion. If their reports were anything similar to those from Cedar Rapids, Fairfax County, or the Illinois school districts, countless children are being restrained and secluded out of public sight.
From Chapter Eight
The quality of medical care is shaped primarily by practitioners’ knowledge of their patients’ physical and emotional needs. When it comes to autistics, that knowledge is often abysmal. Most American doctors, however competent, have never been trained to treat autistic patients. Some admit to flying by the seat of their pants:
“I mean certainly we knew about autism, and we may have learned about it in some of our classes, but from a training standpoint in managing patients or understanding it, I think [we were taught] very, very, little. I don’t recall any directed training in autism; you know, outside of the pathophysiology.”
Pediatricians tend to do better, since our society still believes (inaccurately) that autism is a disorder of childhood. Physicians who treat adults do far worse. In one study of a large medical system, 77% of the doctors sampled (including specialists) considered their own knowledge of and skill in treating autistic adults to be only poor or fair; for doctors in adult medicine departments, the number was 79%. None reported having received any formal training in screening or diagnosing autism in patients.
We know autistic patients struggle to communicate with their doctors. But doctors are also at fault. Indeed, a frequent complaint autistics make about doctors is that they seem to speak an alien language.
“One problem I have encountered is communicating symptoms and answering questions in the way they [the doctors] want. For example, ambiguity of questions like ‘is the pain sharp?’ (What is their meaning of sharp? What does sharp mean applied to pain? Does it mean stabbing? Or do they mean is it the opposite of dull pain? And what is dull pain?) There has been so much miscommunication and misdiagnosis in the past that I now tend to say, ‘I’m sorry, I don’t really understand what you are getting at’. Though honest, this just seems to exasperate them – it’s like an exam and I am refusing to come up with the answer they want.”
Because they can’t understand, assess the importance of, or even believe what their autistic patients say, physicians too often dismiss their concerns. Many autistic adults have given up expecting their doctors to listen:
“Doctors? Might as well just sit there and have a staring contest with each other because they are going to ignore every word I say verbally and in writing anyway.”
“. . . in terms of communicating with my GP, I’m okay with the reality that he probably won’t really understand the complexity of my issues, or my needs. I’m fine with him just taking my blood pressure, and screening me for the usual health problems, but if he decides that my vitals are okay, well then fair enough. I’ll thank him, and go back home, and keep resorting to my trusty home remedies to deal with the myriad of disabling symptoms his exam failed to detect. Because I’ve learned over the years that complaining to doctors about my impossible-to-prove symptoms gets me nowhere, and generally just causes them to think I’m making it all up for attention.”
From Chapter Eleven
On October 25, 2002, Cheryl McCollins received a phone call from the JRC, informing her that her son Andre had “had a bad day.” When she got to there, she found Andre completely unresponsive—she described him as “catatonic.” He had recently undergone several sudden changes, moving to a new residence, having a new case manager, and entering a new classroom. Any one of these was potentially overwhelming for an autistic young man. When he got to his new classroom on October 25, Andre refused to remove his jacket. This earned him his first [electric] shock of the day. Screaming, he tried to crawl under his desk. Staff rushed in and shackled him face down on the restraint board. As his muscles tensed up—an “undesirable behavior”—he earned another shock. “No. Don’t do that!” he yelled. “I’m sorry. Sorry. Sorry.” More shocks. “I won’t do it again.” “No, please.” More shocks. “Help me. Help, help.” Each time he screamed, he got another shock. The staff eventually lost track of how many they had administered. It turned out to be 31 in all, over the course of seven hours. Finally, [Matthew] Israel himself walked in and told them to stop. Gradually Andre calmed a bit, but he wouldn’t talk and he wouldn’t eat. His mother found him like that. At a nearby hospital 3rd degree burns were found over much of his body and he was diagnosed with a stress disorder. Andre stayed hospitalized for 37 days before he finally went home. When Cheryl sued the [Judge Rotenberg Center], the stunned jury had to watch the tapes of Andre’s torture. She got enough money from the settlement to support her son in the future. But Andre has never been the same.