Nadir Monroe, who is eight years old and autistic, should not have been allowed to leave class to go to the bathroom alone. It is against policy at Alexander Wilson Elementary School for students who need the level of support he does to leave a classroom without having a teacher or aide with them.
The school camera's captured Nadir leaving at 9:13 a.m. At 9:25 a.m., his teacher notified the principal he had not come back from the bathroom. About 10 minutes later, at 9:35 a.m., transit police spotted him wandering on busy Market Street.
The father, Lamar Monroe, says he called the school before the school notified him that Nadir was missing. He was even more worried because his precious son is autistic.
It turns out a family member just happened to be walking by and saw Nadir talking with a transit police officer downtown, called Lamar Monroe's mother, who called him. Police got Nadir safely home.
This is not a wandering issue.
This is supervision issue.
A spokesperson for the Philadelphia school district says they're looking into why this happened and what, if any, action will be taken against the teacher.
I know Godwin's Law.
I used to teach a course on the history of the Holocaust-- I know a lot about it.
I know a lot of gay people compared the passing of laws forbidding same sex marriage to the anti-Jewish laws passed in Nazi Germany, but I never felt they were anything like that. Anti-marriage laws enshrine an unequal situation. The anti-Jewish laws took away existing rights and constricted the freedoms of an already marginalized people. As angry as I am about the treatment of gay people in the United States, it has never struck me as similar in any significant way to what happened to Jewish people in Germany in the 1930s.
But the Wandering Code feels like the Nuremberg Laws, even though I know it is really nothing like them. It still scares me to death.
The Nuremberg Laws were passed in 1935. They removed German citizenship from Jewish people and made it illegal for them to marry or have sexual intercourse with non-Jews and to participate in civic life.
Clearly, on a rational level, the Wandering Code is much more similar to the racial hygiene laws that the Nazis passed:
The July 1933 "Law for the Prevention of Hereditarily Diseased Offspring" prescribed compulsory sterilisation for people with a range of conditions thought to be hereditary, such as schizophrenia, epilepsy, Huntington's chorea and "imbecility". Sterilisation was also mandated for chronic alcoholism and other forms of social deviance. This law was administered by the Interior Ministry under Wilhelm Frick through special Hereditary Health Courts (Erbgesundheitsgerichte), which examined the inmates of nursing homes, asylums, prisons, aged care homes and special schools to select those to be sterilised.
And it is not very much like those.
Because while those laws were passed by people who wanted to protect society from the genetically inferior, the Wandering Code was put in place to protect vulnerable people from danger.
I do not doubt for a minute that the intentions of the people who pushed hard for it were very good.
But it feels like the Nuremberg Laws to me, even though I know that is irrational.
The second time I had a significant conflict with Kim Wombles, it was over the way that she wrote about the Wandering Code. I initially contacted her on her Facebook page, which was a mistake, because it made her very annoyed. But I tried that venue because comments had been so unproductive the last time, not because I wanted to be aggressive or intrusive.
I'll quote at length from what I wrote then, because it matters:
On the other hand, I am a teacher who understands how terrifying it can be when someone with autism slips away. So I understand why Kim Wombles, a parent and advocate, would disagree with that position.
I wish that Kim would have focused her disagreement on the thing she does well: detailed analysis of the facts. Instead, she tried to attack ASAN on the basis on their rhetoric-- the way they expressed their ideas.
I have a problem with that. A serious problem.
People with autism have, by definition, a communicative impairment. People who claim to care about, to be experts on autism, should not attack people with autism for expressing fears clumsily. When the worry that you might be unfairly treated by authorities is as real as it is for people with autism, and when fear and worry make it especially difficult to communicate without hyperbole, it hurts for "friends" to attack you for saying things in a way they find overblown.
And, as someone who taught English for many years and studied rhetoric at the graduate level, I find Kim's critique odd. She calls the rhetoric used by ASAN inflammatory and sensationalized, based primary on these two sentences:
Will you help us stand up for disability rights?
If approved, this new coding promises to label hundreds of thousands of children with "wandering" diagnoses that would make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment.
In order to offer a meaningful critique, you need to understand the genre the author is working in. I do not find those sentences inflammatory or sensationalized at all-- using the correct standard of other change.org petitions. This is what Kim would have had the author do instead:
Rather than reacting in a knee-jerk manner, why not approach this from a rational, evidence-based perspective, asking that the CDC operationalize the definition of wandering (which would have to happen for it to become a diagnostic label); conduct better research into the number of individuals in institutions and group homes who wander, and the number of children with ASDs at home who have wandered; and make safeguards to ensure that a diagnostic label of wandering will not result in unnecessary restraint and that individuals' autonomy will be respected?
Because, Kim, this is a petition asking for political action, not a research paper.
And she has a different standard for people with autism and people, like her, who have kids on the spectrum. In her second post on the matter, she quotes Wendy Fournier making this statement about Ari Ne'eman:
His arguments for self-determination are unfounded and prove that he has no understanding of individuals who are severely affected by autism - and no desire to protect them from harm.
Kim doesn't distance herself much from this statement, either, noting only that she doesn't think Ari needs to be removed from the IACC.
So "Stand up for disability rights" is over the top, but a direct statement that someone does not care about kids with autism is fine.
Kim is free to disagree with the petition. What bothers me is her willingness to attack people with autism for using strong language but tolerating it in parents of kids on the spectrum, who do not have impaired communication, but agree with her. That's not right.
Please note that I have not attacked Kim for expressing her point of view or for disagreeing with my opinion. My critique is based on the same things that bothered me the first time I contacted her: attacking autistic people for failures of communication which strike me as being related to the disability of autism and allowing a range of expression to parents that she does not allow to self-advocates.
If you really think the ASAN petition is more offensively worded than Wendy Fournier's direct attack on Ari, please explain to me why. Otherwise, I'll stick to my belief that Ms. Fournier's statement is outrageous and mean-spirited in a way that is obviously infinitely more inflammatory than what ASAN published.
And I'll stick with my opinion that this incident matters, because it will happen again. The next time parents get an idea that will limit the freedom of autistic people in the name of safety, the autistic people who dare to speak up for the idea that we should have anything to say about our own bodies will be branded bullies and drama queens.
An autistic woman in England was legally banned by a judge from having sex last month. The reasons were good-- to keep her safe.
But how close to racial hygiene are you willing to wander?
In the general panic over the proposed changes to the diagnosis of autism for DSM-5, I think most people missed a story that may end up having much more serious and sinister implications for autistic people.
One of my most serious concerns about the wandering diagnostic code that was recently added by the United States Centers for Disease Control is that it encourages insurance companies and government agencies to classify tracking devices as medical equipment. This is of concern because the solution was chosen before appropriate research was done, but also because, if tracking devices are medical equipment, the door is open to medically implanted tracking devices.
Proteus Biomedical of California is beginning tests in England that start us down that path. What they are testing is an edible microchip that will alert your doctors if you don't take your medication at the right time:
The Proteus technology is based on the company's digestible sensors, which are no bigger than a grain of sand. They are composed of the ingredients commonly found in food and are activated when they come into contact with stomach fluids.
At the heart of the technology is a tiny silicon wafer separating tiny quantities of copper and magnesium, which effectively forms a microscopic battery that generates an electric current when immersed in the acidic environment of the stomach.
These electric currents, which can be given individual signatures to match the drug taken with the edible sensor, are detected passively by an intelligent patch stuck to the patient's skin, in much the same way that electrocardiogram (ECG) skin patches can record the electric currents within the heart.
The patch, which is designed to be worn for seven days, includes a flexible battery and chip that records the information and sends it by Bluetooth wireless technology to the mobile phone of a relative or professional carer.
I find the implications of this terrifying for anyone who is taking psychopharmaceuticals. I fear that it may become a requirement for certain kinds of insurance, or even government programs, for people to have and use sensors like this. The potential to enforce medication makes A Clockwork Orange not a parable but a possibility.
I am especially nervous because I see people simultaneously exploring this technology, deciding to track autistic people diagnosed with "wandering," and pushing to register autistic people with the police.
My nightmare scenario is that medical tracking devices become common and that that information is routinely shared with the police in the interest of keeping autistic children safe. And little or no provision is made for removing these systems when people are no longer children or when children no longer wander.
And then there's an attack of some kind-- a school shooting or a hijacking or a terrorist-- and one of the culprits is diagnosed with Asperger's, as I think it pretty likely one of the Columbine shooters would have been if he were the age to enter high school today.
How might that information be used? How seriously would the independence and civil rights of a group of neurologically different people be taken? Especially if you have already treated us like dangerous animals, tracking us with microchips and registering us with the police? Will those things makes us safer then? Might they also open us up to new dangers that need, at least, to be considered? As these things move forward, as I think inevitably they will, will we introduce any safeguards for the independence of autistic people?
Sort of what I was talking about when I made this video. . .
"Missing," the last episode before NBC's Parenthood goes on hiatus until January, gives us a chance to think about about the complex issue of autism and wandering. You may want to watch it before reading because there are going to be spoilers.
A diagnostic code for wandering was recently added by the United States Centers for Disease Control. Although the code itself can be applied to conditions other than autism, the pressure to add it came almost entirely from organizations that represent the interests of parents of autistic children.
Did Max wander? I guess so-- he went off unsupervised into a place he wasn't supposed to.
Was it a result of his autism? I guess so-- his difficulty with changing plans and his obsession with dinosaurs certainly had something to do with it.
Should it be added to his diagnosis? At this point, it wouldn't be. But what if a similar situation happened again? Kristina's a pretty nervous lady. Adam and she are both control freaks. If Max made one or two more outings in a similar vein, I think this exact behavior could result in wandering being added to Max's diagnosis.
And what if in each time it was the result of broken promises and poor supervision?
I think one of the reasons parents love the idea of a wandering code is that they fear being blamed if their autistic child runs away. After all-- Adam and Kristina wouldn't have to feel as bad as they do here if they did not have to look at their own behavior at all, if they could just blame Max and his autism. Autistic people wander. That's the way it is.
I was one of many autistic adults who voiced concerns about the wandering code before it was added (see the video above). The way those concerns were universally either derided or ignored by parent advocates still shocks me. If you knew about this code, and weren't fighting against it, we have a fundamental disagreement about the right of people with autism to control our own bodies. If you are glad, rather than alarmed, that it happened, please know that on some level I do not believe that you accept my basic humanity. And sometimes that makes it very hard to be friends.
I have a harder and harder time writing about Parenthood, too. Part of that is that my major criticism of the show from last season, that it consistently failed to allow the viewer to empathize with Max, has largely been addressed. Mainstreaming the boy has allowed the writers to create several situations where we have seen things from his point of view, most notably his fight with his cousin and its aftermath. Max is much a real person as any of the Bravermans this year.
That's not saying very much, though. One of the other reasons I've had a hard time writing about the show is that I just don't like it very much. It's not my kind of show-- I'm expected to care about people I find annoying, and I'm expected to take extremely contrived situations seriously. I enjoyed Lauren Graham on the first several seasons of The Gilmore Girls, but she was doing half-hearted, warmed-over versions of her best work by the last year of that show, and she never stops getting on my nerves on Parenthood. The writers use the campy storylines of soap opera ("I want a baby. The coffee girl at work is pregnant, I'll just ask for hers!"), but take no joy in how ridiculous they are.
This is a show where it's supposed to be extremely dangerous for one child to ride a bus by himself, but a younger child in the same episode is allowed to wander unsupervised around a doctor's office and help himself to ice packs because it is a convenient way to get him out of the room so the adults can talk. There are things like this in almost every episode. They drive me crazy.
But that doesn't mean it's a bad show or that the shows I like are better. The Good Wife is my favorite show, and it's every bit as stupid and unrealistic as Parenthood (and offensive in its portrayal of the disabled and gay people), but I enjoy, or enjoy being annoyed by, the stupidity of The Good Wife. Parenthood mostly just annoys me, but not because it's bad.
It's just not my kind of show.
I also have been hurt by some of the reactions that some parents have had to my writing about Parenthood. I have contentious interactions with parents weekly, if not daily, but they don't usually make me sick to my stomach. They usually make me flap and pace. They don't usually make me want to curl into a ball and die.
But I did when I was told I was "selfish" for writing this:
The writing on the show is usually pretty predictable, and I was able to guess several steps ahead (Adam and Kristina would decide to ask about the baby's gender, it would be a girl, and they would be relieved because the autism risk would be much less). And when things happened just like that, I burst into tears.
Because Adam and Kristina were so happy not to be having a son like Max. There is nothing at all wrong with their reaction, and I do not mean to criticize NBC for showing it as they did (other than that it really was quite predictable).
It smarts to see parents celebrating the fact that a kid like me probably won't be born.
So if it's "selfish" for me to write that, if there's that little room in the minds of parents for my feelings and reactions to even exist, I don't really feel like writing about what I thought last week when Kristina-- in the midst of a fight with her husband about a woman at work who kissed him-- said, "This is how we become part of the eighty percent!"
She was referring, I assume, to the myth that eighty percent of marriages that produce autistic kids end in divorce. And it was just so realistic that she would say that-- yeah, that's how the myth got started. People got divorced for reasons that had to do with their own failures to care for each other and nothing at all to do with their kid's autism. But, hey, aspies always make great scapegoats.
And I certainly wasn't going to write at length about her behavior the week before. I know that there are parents out there who think in real life who think it is perfectly great to physically intimidate other kids who tease their little aspie darlings. It isn't. You don't know what challenges that big bad bully half your size is facing.
I wouldn't keep watching Parenthood if I wasn't going to write about, and the gulf in perception between the parents who read this blog and myself makes that writing increasingly painful. I may or may not be catching up with Bravermans when they return in the new year.
A diagnostic code for wandering that can be added for people with autism or other conditions is at best a deeply troubling development. To understand why, please think seriously about the story of Cameron James Smith.
Autism Speaks, the National Autism Association, and the companies who want to sell tracking devices to parents of autistic kids have been very successful in drumming into the heads of people in the media that "autistic kids wander away." Cameron did not even need to have the diagnosis for reporters to use that frame when writing about what happened when he left the Bob Hope Airport a few days ago:
Authorities in Southern California have found a 14-year-old autistic boy who wandered out of Bob Hope Airport in Burbank, Calif.
The boy, Cameron James Smith, was found unharmed outside of a restaurant in West Hollywood, Calif., around 6 p.m. PT, according to the Burbank Police Department.
He didn't know what he was doing-- he certainly didn't have a specific destination in mind. He just wandered away. Because that's what autistic people do. It doesn't mean anything when they do it, so you don't even have to think about what they might be communicating or trying to do.
But people who saw Cameron, who actually has Asperger's syndrome, say that he knew exactly what he was doing and where he wanted to go when he ran to a gay bar:
The wait staff recognized the runaway boy from the news & asked for ID before serving him a regular orange juice. When asked for his name Cameron told the Abbey Manager, Nick Lambert, that his name was George. Nick showed Cameron his photo on the news and Cameron bolted. He kicked off his freshly acquired Casual Cool boat shoes in the park & ran into Pizza Rustica where he asked to use the restroom. He locked himself in & eventually surrendered to Lambert when he sat a table in the pizza shop.
The story the media portrays is that of "an autistic child is safe today after running away from the Burbank airport when his mother failed to ensure his safe departure". The media won't tell you that Cameron is gay, that he's being shipped away for his homosexual tendencies (again) or that he'll be bullied into a closet for the next four years no thanks to his parents.
Cameron didn't run away from school. He simply fled to the only gay sanctuary he'd ever heard of, hoping that someone there could save him. It was almost as if he was told "It gets Better" by a president who believes that marriage equality should be left up to the state & when he tried to seek sanctuary the universe said "not today kid!" Without realizing it Cameron's only hope was to land on safe soil but unfortunately this young man didn't flee Cuba & the Abbey is not Miami beach aka freedom.
So-- was Cameron just randomly and autistically wandering, or is he a gay kid who ran away because he feels persecuted by his family?
I don't know which narrative is true, but I think the question matters a lot.
Do you see how the wandering narrative has already made it easy for parents who may not have their kids' best interests at heart to get people to ignore the reasons why they may not stay where they are supposed to?
And, again, this is going to cause ridiculous problems as kids who get a wandering diagnosis because of legitimate childhood problems age. Very few parents, schools, or doctors are EVER going to push to remove a diagnosis which gives them access to resources they might have without it. Especially if it also increases the control they have over a teenager.
This is why I feel such anger toward parents who think that feelings are the most important at stake when they ignore autistic adults or act like we are objects.
Cameron's story was told for him by a campaign mounted by Autism Speaks.
Please don't pretend that that might not have disastrous consequences for him.
Don't say I didn't try to warn you.