In May 2013, "Asperger's Syndrome" will be removed as a diagnosis from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), leaving "high functioning autism" in its place. I agree with this change. Given the importance of the manual, however, it's caused a lot of consternation and caused me to reflect upon my experiences.
I was diagnosed with Asperger's syndrome in 1998. Expelled from two schools in quick succession—first a private Catholic school in the third grade, then a the local public school in the fourth—I was placed in Northwoods, an approved private school for students with emotional disturbances or autism. Northwoods served the entire county; each district sent a shortbus with a few kids.
I never felt like I had symptoms severe enough to warrant a diagnosis of Asperger's. I have some issues with anxiety and depression, but I can trace these back to my "treatment" at Northwoods.
People with Asperger's are supposed to be "mindblind" - unable to process emotions or sarcasm. They are loners. None of this describes me—I'm a gregarious PhD student with a wide circle of friends who has scored severals jobs and internships through schmoozing at conferences.
But in the mid 90s, I was not a successful doctoral candidate. I was told that I was "a danger to myself and others" and consigned to a "partial hospitalization program" which catered specifically to boys like me. (Northwoods was ostensibly co-ed, but the male to female ratio was about 20:1)
Northwoods existed due to a series of laws, passed in and around the 1990s, which mandated that all US public schools must make "reasonable accommodations" for students with disabilities. Originally, this meant that schools had to add wheelchair ramps, provide braille textbooks, physical accommodations. But sometimes a school simply couldn't provide the instruction needed. For example, a small school district might not have been able to provide a deaf child with sign language classes, or a blind child with braille books for every class.
To meet these needs, approved private schools were created. The idea was that tax dollars from several school districts could be pooled and one school served all of particular population. For example if your kid was deaf, they didn't go to Dick Nickson Elementary, instead they went to the Helen Keller school for the blind. In my view, this concept became twisted from its intention and used to exile "troublesome" students away from the general population. Schools opened themselves up to lawsuits if they expelled students with mental disturbances: it was easier to simply place all the “aspies”, ADHDs, and bipolars of in some far off school.
At Northwoods, every minute of every day was quantified and ranked, with accolades and admonishments doled out. We'd be locked in "calm down rooms" for up to 6 hours and restraints were imposed as a form of corporal punishment for minor infractions.
Schooled in Security
Getting to Northwoods was stressful in itself. Students were bussed in from all over the county, and commute times could be long. Between the distance to Northwoods and the serpentine pattern used to pick up my fellow students, a bus ride could last an hour in heavy traffic.
When we reached the school, we waited an additional 20 minutes to be searched. After Columbine, Northwoods decided that students needed to be scanned upon entry, a pre-9/11 example of security theater. (I still get flashbacks to middle school every time I go to the airport.)
The buses lined up, and then three at a time they advance to the front of the school and open their doors. There were usually no more than 6 or 7 kids from each school district on a bus, yet many school districts still sent full length buses since we didn't need wheelchair lifts. So a line of ~30 buses would snake out of the semicircle in front of the school and half a mile down the block. Anyone who has encountered bullying on school bus can sympathize with having an hour-long commute. Fellow riders assaulted me with seat belts and fists; one even spat in my face, though that only happened once since I pummeled him so thoroughly afterwards.
At the school, three staff stood where the buses unloaded – one for each bus being unloaded. Each staff member had a walkie-talkie - one of those FRS deals that people used to bring to amusement parks before ubiquitous cell phones. When one load of kids cleared security, staff in the building would radio out to the buses, and have the outside staff members unload another set of kids
Inside the school's entryway there was a table, forming a barrier to the intersection with the main hallway. You placed your backpack on the table to be searched, then stepped to the side to be wanded with a metal detector. If anything beeped, you emptied the pocket or had it patted down. Kids used to smuggle cigarette packs in their crotches because of this. (Unlike the TSA, the Northwoods staff was not allowed to pat down childrens' genitals.)
Instead, the school removed all the bathroom stall doors in retaliation for the students who smoked in them. I was lucky enough to be friends with the school nurse, but many students clenched their bowels all day rather than defecate in public.
Once the search was done, you'd head to your classroom. There were three schools within Northwoods – the elementary, middle, and high school. Each school had four classrooms. Each classroom had one teacher, two assistants, and an assigned therapist. Students weren't always separated by age; it was more by what sort of disorder you had, at least for homeroom. We'd break into little groups for actual classes, which could be as big as twenty or as small as one or two kids.
During homeroom in elementary school, you did "morning work"—usually word searches. It was boring, as they ran out of new ones after about a week. By Christmas, anyone could do them all in under a minute. You quickly learned to just sit with your head facing the paper, drawing doodles, or you'd just be handed another one. If you wanted breakfast, you didn't do morning work, so lots of kids did that instead, especially since about half of the students were from low-income areas and got free meals. The other half were from the wealthy suburbs, which made for an interesting dynamic. (Though surprisingly there was almost no racial tension – similar disordered students tended to clump together, regardless of color or creed.)
Eventually, the pledge of allegiance would occur over the phones we had in each classroom—there wasn't a full-blown intercom system. Then the day would begin.
The Point Sheets
They had a strict disciplinary system at Northwoods to try and keep us in line. The main form of discipline at Northwoods was the point sheet. It was a system similar to Hogwarts' house points system, but for individuals. And instead of winning a trophy, you earned the basic rights granted to everyone at normal schools, like being allowed to have recess or use the bathroom unescorted.
The elementary, middle, and high school each had their own point sheets, and sometimes there were tweaks from semester to semester. The system changed throughout the years, but the basic concept always stayed the same. You could earn up to hundred points in 1 day, ten per period. There were five categories, such as "follows directions" or "completes work". Each category earned up to two points. Partial completion, or a minor slip up, resulted in one or two of the potential points being docked.
If you maintained a high enough point level for a certain number of days, you earned “privileges”. The system taught a simple lesson about control: obey, and life will be easier. It's hardly an accurate or representative preparation for society, where life's complexities and challenges apply equally to everyone.
The other thing about point sheets, of course, is that you lost points if you misbehaved. "Verbal Aggression", for example, led to an immediate loss of 50 points.
If you went "in the negative"—a point total below zero—you were placed under in-school suspension (ISS). A cubicle was placed around a study carrel by a teacher's desk, so the student couldn't see the classroom, and the classroom couldn't see the student. The work was brought to you.
The thing is, though, we didn't do much work at Northwoods, and what we did was trivial. A stack of work, intended to last a day, could be finished off in an hour. Completing it early resulted in spending the rest of the day reading. The teachers thought we viewed this as a punishment.
I educated myself at Northwoods, reading horror, science fiction and mystery novels, but, more than anything else, nonfiction material on history, politics, and true crime. (I liked forensics before CSI made it cool)
I was not just a student of the humanities; I also enjoyed books about the natural sciences. Math was a weak subject for me, because I didn't have the patience and saw no practical application for it. Northwoods wasn't exactly equipped for advanced students - we were assigned multiplication problems into late middle school.
At home, I tinkered with my computer. My family was not wealthy, especially after my mom's cancer hit and she had to stop working, and it was impressed upon me that the computer must be treated with the utmost care. If it broke, we would not be able to buy a new one. I learned everything I could about it, a 1998 model, in an age when viruses were a big issue. I learned a lot about firewalls, anti-virus, and common scams. Eventually, I started reading through back issues of Phrack and 2600. I never told anyone about my dabbling, as being labeled a hacker (or any other sort of rebel) was not helpful at Northwoods, where the only computer class consisted of a typing course.
One student I was friends with knew how to pick locks, and stupidly helped a teacher get into a locked cabinet they'd lost the key to. His reward was to be blamed for any subsequent theft that occurred in the building, even though these thefts were all from unlocked areas (some on days he was absent.)
Likewise, it soon became clear that I liked to play around with computers, and that alone meant that if anything went wrong, such as a computer slowing down or simply crashing while I was using it, I would be accused of somehow making it happen. If they had heard I was reading about packet sniffers and pings of death, I'd surely have been instantly banned from all electronic devices.
Looking back, I wonder what would have happened to me if they hadn't punished me by making me read. It's really hard to justify not hitting a bully who's screaming, inches from your face, when your "punishment" will be sitting alone, unmolested, for a whole day, surrounded by books.
In-school suspension, however, was tedious. They screwed with you every step of the way, sometimes in petty ways, such as substituting your menu choice at lunchtime with a less desirable option: If you protested, they'd tell you that they had a lot on their mind and if you weren't in ISS you'd get your chocolate milk. It was a mind game to them: I had one teacher who told me that he was making it his mission to make me hit him, so that I would be sent to juvenile hall, where rape is a fact of life. I had another tell me that she did not care if my mother, who was undergoing chemotherapy, were to die.
It was the point sheet system that set the framework for these degrading and dehumanizing encounters, and students could be ordered to "produce your papers" on demand—I was once penalized 25 points for "disrespectful language" after pointing out its eastern-bloc overtones!
But the points system was not the worst thing about Northwoods. ISS, after all, only works if you're willing to sit quietly in a corner. Sometimes kids refused to do so, or became so angry that it wasn't an option. In these cases, they had a special place for them.
Northwoods had militaristic affectations. The teachers and staff viewed their authority as absolute (Friere's banking system of education taken to it's extreme.) The culmination of this belief was the Calm Down Room (CDR). If you went for a tour of Northwoods, they'd make it very clear that they don't engage in corporal punishment. Instead, a student deemed "out of control" could be restrained or sent to a CDR. The problem was Northwoods's very loose definition of what amounted to being "out of control", which in practice meant the use of restraint and imprisonment for almost any infraction.
Refuse a direction from a teacher? That means a time-out in the in suspension carrol. Argue with the punishment? That's out of control--because being "in control" means being able to follow directions. Arguments over assignments, or use of the bathroom when escorts were unavailable, could quickly spiral into a trip to the CDR. A refusal to go to the CDR led to a full-blown restraint. There is no question that this is corporal punishment: ignoring orders meant, ultimately, that they would lay hands on you.
Kids were restrained and locked up for offenses such as taking too long on the computer, losing their point sheet, failing to complete homework, refusing to wait for a bathroom escort, and many other minor infractions.
What exactly was the CDR? The CDR was a short, dimly hallway with two rooms in it. These rooms had linoleum floors and white concrete walls. Each room had a one-way mirror on the same wall as the door - when the light was on in the CDR room and off in the hallway, you couldn't see out. The door swung inwards, and only had a handle on the outside.
As the door swung into the room, a staff member would be able to stand on the outside of the room and hold the door closed. This was an important distinction, because locking the door would have been illegal. Instead, they would have someone physically hold it shut.
So how did you get out of the CDR? The terms were simple: sit quietly against the back wall for ten minutes with the door closed, and ten minutes with the door open, and you could return to class. But sometimes the door would stay closed longer than ten minutes, if the staff dawdled or just decided to have a nice hour-long chit-chat. Maybe you had to use the restroom. Well, asking for a bathroom trip obviously wasn't being quiet, and failing to be quiet was proof that you remained "out of control." This process could repeat a couple times, perhaps through lunch. It felt like torture to sit there for hours with a full bladder and empty stomach.
There are various levels of restraint.
The simplest was a sort of basket hold. A staff member would grab the student from behind, crossing their arms, and holding tightly. If they sat still, without struggling for 5-10 minutes, they'd be released. This was usually used only if there was a severe staff shortage or if the CDRs were full.
Usually, restraint involved two staffers. One would take your left arm, and one would take your right. If you resisted, you were thrown to the ground or against the wall. One staff member sat on your legs while the other either sat on your back or to one side, holding your arms on the floor. You could have as many as five people on you: one on each limb, plus one on your back.
Sometimes you got hurt in these restraints. I had my face pushed into the ground hard enough to trigger a nosebleed. Another time, I was thrown to the floor of the CDR and cracked my collarbone. On another occasion, my chin struck the floor before my torso, and I had to be sent to the ER to get stitches, to stop the bleeding.
That's right: something as simple as refusing to do your homework could set of a chain of events which ended with you being locked in a dark room or physically harmed if you stepped out of line—a culture of control backed by the threat of violence, all while telling us we needed to "learn to control our aggression". It was doublethink at its finest.
Every day was planned to the minute, and deviance resulted in swift punishment and even physical injury. Education occurred at Northwoods only by accident, in study carrols intended as punishments. To this day, I have nightmares that I am back in that school. Loud noises or sudden movements cause me to flinch so sharply that everyone around me takes notice. I am prescribed anti-anxiety medication to deal with the state of constant vigilance that life at Northwoods instilled.
More importantly, I missed out on key milestones that others take for granted. Teen movies depress me. I was never there. There was no Breakfast Club, no Saturday detention. We had no jocks, as we had no sports.
I talk to no one about these incidents, due to the stigma against mental illness present in our society. I know that if I wrote about these experiences under my real name, I might never be awarded tenure or be hired at a prestigious private company.
Instead, I am writing this article. I hope that it informs, but more importantly, that it inspires. There are thousands of kids like me out there. Eventually, it gets better.
Published 6:00 am Sat, Jan 5, 2013
aspergers, autism, special education