Thursday, September 27, 2018

Neurodiverse-Friendly Workplaces in Your Community: A Symposium Report

Photo courtesy Max Sparrow
[image: Symposium organizers and presenters stand in front of the Dirt Coffee
Truck while the Dirt workers smile from the left window of the truck.
From left to right, the people pictured are: Dr. Elaine Meyer, Bill Morris,
Lauren Burgess, Kris Harrington, Drew Webster, Dr. Stephen Shore,
Dr. Kristie Koenig, Thomas Koenig, David Finch, Becca Lory Hector,
Philip Tedeschi, Antonio Hector, Erica Elvove.]

Maxfield Sparrow

UnstrangeMind.com

I am sitting in Dirt Coffee in Littleton, Colorado. Ryan, an outgoing young woman with enormous blue eyes, has served me a massive Americano to which I’ve added tons of cream. “Do you know about our mission?” she asks me.

I do know the mission of Dirt Coffee, but I let her tell me anyway because I want the joy of hearing the words again.  I discovered Dirt Coffee earlier today when I attended a symposium at the University of Denver’s Graduate School of Social Work where I heard heartening words about local workplaces that are making the effort to create friendly, inclusive environments for their neurodivergent workers.

The symposium, which ran from nine in the morning until half past eleven on Friday, September 21st, 2018 (after which many of us retired to the excellent mediterranean restaurant across the street to continue networking and sharing information), was sponsored by Colorado’s Center for Neurodiversity and The University of Denver Institute for Human-Animal Connection.  The headliners were Dr. Stephen Mark Shore of Adelphi University in New York and Dr. Kristie Patten Koenig of NYU. The two joined an impressive panel with Philip Tedeschi of the Institute for Animal-Human Connection, Lauren Burgess, founder of DIRT Coffee, and Bill Morris, the CEO and director of Blue Star Recyclers.

First, however, Becca Lory Hector, the Director of Communications/Program Design and Admin at the Center for Neurodiversity, spoke, setting the tone for the event by talking about the importance of community and thanking everyone for taking the time to change the conversation around neurodiversity because we can do so much better than we are. Then the host and moderator, David Finch, author of The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband and second-season consultant for the Netflix show Atypical, got the audience laughing by sprinkling jokes through his introductions of the panel members.

Dr. Stephen Shore opened his presentation by talking about central coherence and hyperfocusing. This autistic trait is often framed as a negative “symptom” of an “illness,” but Dr. Shore demonstrated why that is an erroneous way to view such a core aspect of how our brains work. He put up two photos of the same carousel and asked the audience to find ten or eleven tiny differences between the two photos. My friend Dennis Mashue, seated next to me, cracked me up by saying, “the top box is labelled number one and the bottom box is labelled number two.” I shot him a look and he shrugged, “At lunch yesterday Stephen said we should all think outside the box.”

We found a few differences, and then Dr. Shore revealed all the rest of the differences to us. Then he removed the photos from the screen and asked us: what was this a picture of? What animal was in the foreground? What color is the animal behind the first one? How many animals are in the row closest to us? We could only answer the first two questions because the exercise had forced us to focus on the details so much that we missed seeing much of the big picture. Dr. Shore explained that we had just engaged in an autistic thinking style and asked us: Since neurotypical people are usually better at seeing the big picture, does that mean they have a deficit of detail-oriented observation?

Of course that’s not the case. Our society does not generally view the ways a majority of people view things as deficits. Dr. Shore clearly demonstrated that focusing on details is not a deficit, simply a different way of engaging with the world—in fact, it is a way of engaging that can have a lot of benefits. Dr. Shore asked the audience to name some tasks that benefit from detail-oriented thinking. Audience members called out: coding, film production, reading knitting charts, technical editing. Being detail-oriented, as well as many other autistic traits, are labeled as deficits or deficiencies, but Dr. Shore implored us to instead look at autism and other neurodivergences as presenting challenges, but stressed the importance of focusing on strengths when considering autistic people.

Instead of thinking of autism as deficits in communication, socialization, and restricted interests, Dr. Shore told us, we should be focusing on possible areas of success by looking at how an autistic person prefers to spend most of their time. What are their abilities? What are their interests? (Dr. Shore interchangeably used the term “special interest” and “focused interest.” I’ve been fumbling for a better phrase than “special interest” because I don’t like using the word “special” to describe aspects of autism or other developmental disabilities. I really like “focused interest” a lot as an accurate, non-pathologizing term.)

Another question Dr. Shore recommended for those seeking to help an autistic person find their areas of employment success was: What kind of mind does the person have? To illustrate the last concept, he asked the audience if they knew what kind of mind autistics have, asking, “is it a visual mind?” Dr. Shore was pleased to see that no one raised their hand and explained that, while many, perhaps most, autistics are visual thinkers, others are so much the opposite they can’t even read a map. It was a caution against stereotyping the entire body of autistic people as having one particular type of thinking or the same learning needs. I particularly appreciated Dr. Shore making this point because I am not much of a visual thinker. I can mostly read a map but that’s the summit of my abilities.

Dr. Shore talked about the “three As” of autism: awareness, acceptance, and appreciation. He said that organizations have done a pretty good job of awareness and explained that acceptance does not mean just giving up on a person and their future but rather viewing autistic people as whole and valuable human beings who do not need to be eliminated, cured, or made to look and sound like everybody else. Appreciation, of course, would be a natural result of reframing how society views autistic people, using an abilities-based model to help channel people into employment that suits them, and seeing society’s benefits, the results of including neurodiverse people in the workforce.

Dr. Shore mentioned a Los Angeles organization called Autism Works Now and the Glorious Pie business that has come out of it. While the page has some language that does not match Dr. Shore’s message (e.g. “Larry King’s fight against autism”) the organization overall appears to be doing a lot of good work in helping autistic people find jobs, and helping employers understand why autistic people make great employees.

This was my first time seeing Dr. Shore speak and I am a huge fan now. I admit that I was worried about what he might say since he is on the board of Autism Speaks and most people familiar with my writing already know that I do not like Autism Speaks. But after hearing what Dr. Shore had to say, I am grateful that he is working with Autism Speaks and hope that his message of acceptance, focusing on strengths, and inclusion are influencing the organization in positive, helpful ways. I unreservedly recommend Dr. Shore’s work as he is so clearly a force for good in our community and in the world.

After Dr. Shore spoke, his close colleague and friend of many years, Dr. Koenig, spoke about the difference between equality and equity. She showed a slide of four people who each got a bicycle. The bicycles were all the same: it was equal and ‘fair.’ But one person couldn’t use their bicycle because they were a wheelchair user who didn’t have leg strength to use the pedals. Another was too tall to use the bicycle and a third was far too short. Only one person could enjoy the bicycles—not fair at all!

But in the next slide the short person had a smaller bicycle, the tall person had a bigger bicycle, and the person who uses a wheelchair had a hand-pedaled quad bicycle. When all the bicycles were the same only 25% of the users were able to enjoy the bicycles. When each bicycle was different, to accommodate for the differences between riders, 100% of the users were able to enjoy the bicycles and instead of being merely equal, there was actual equity.

Dr. Koenig used this example to illustrate an important consideration: individuals know what they need. Professionals should listen to people explaining their needs rather than assuming they can just figure out people’s needs and fill them with no input from those who will have to live with those professionals’ choices.

In addition to speaking, Dr. Koenig showed some film clips. One clip said that neurodiversity is as important for the human race as biodiversity is for life itself. She also showed a clip of the actor Benedict Cumberbatch in The Imitation Game, a film about genius mathematician Alan Turing. (Turing was quite likely neurodivergent, possibly autistic.) Dr. Koenig showed a clip in which Turing was very literally interpreting what his colleagues said, and she talked about how Autistic people can leave others feeling as if they are rude or irritating because of the differences in how we communicate.

Dr. Koenig also pointed out that whenever businesses support neurodiversity in their workforce they see an increase in productivity and profit as a result. The diverse strengths, skills, and abilities autistic people have mean that matching autistic minds to the best fitting trajectory will not only be transformative for us but also for the employing workplace and for society at large.

After Dr. Koenig spoke, David Finch began asking questions of the entire panel. Sometimes I could tell who was saying what, but not always because I was sitting in the back. Here are some of the things people talked about:

We have to force inclusion. It will not happen naturally. But we can force inclusion in powerful and compassionate ways. One panel member suggested that a Christian model might call that sort of forced inclusion “grace.”

Communication is very important. Many people type to communicate, and we have to keep offering that option (as well as other forms of communication beyond speech) to everyone to keep communication channels as open as possible. Most people tend to be lazy communicators so we need to help autistic people with the tools to engage in communication as much as wanted/needed.

Small talk is virtually useless, but people engage in it anyway. How long does it take to genuinely check in with someone? If we think that extra time is a burden we need to re-think. A work environment that is humane and inclusive is also economically valuable. Companies will want to choose humane communities and look for strong inclusive values and attitudes plus policies in place to support those values. Building accepting communities helps everyone. There is research supporting this but it’s hard to briefly cite because it’s multi-disciplinary and you have to integrate findings from many places to come to these conclusions. (Note from Max: I hope some academics do that integrating work, write down the results, and publish. I’d jump at the chance to read and write about that research!)

Someone (I think it was Dr. Koenig) mentioned the importance of authentic autistic involvement in all research about us and our lives. In that vein, they recommended PARC: The Participatory Autism Research Collective.

Lauren Burgess talked about the DIRT coffee shop she founded in 2013, its mission to employ neurodiverse people, and their internship program and education. More than once Burgess mentioned that neurotypical employees routinely required more training and more supports (like visual aids) than the neurodiverse employees. Burgess told a story about an employee who developed a highly efficient way to do inventory. Burgess mentored him by suggesting he train all the other employees in his system. He wrote detailed instructions in an email and now everyone uses his system.

David Finch responded that one mentor can put everything on track for an autistic worker by suggesting things (like taking a leadership role) that might not have occurred to the autistic person.

Bill Morris talked about his business, Blue Star Recycling. He talked about his early struggles when he was first promoted to management in his twenties and learned “Be the kind of boss you’d like to work for.” As a result, he runs his business that way. His employees are neurodiverse—from entry-level employees to management. Morris praised the strengths of the autistic people working in his business, and said that the attention to detail was perfect for the work they do: dismantling old electronics so the parts can be reused in other devices and projects.

Finally Dr. Elaine Meyer , who was in the audience, spoke about a press release issued earlier this month, announcing that Harvard’s Center for Bioethics will be collaborating with Colorado’s Center for Neurodiversity in studying issues surrounding “ethics, human rights and neurodiverse qualities of life.” The press release states the goals and aspirations of this collaboration are, “expected to evolve and, most importantly, be responsive to the priorities and needs of a neurodiverse population. There will be an emphasis on joint projects including conferences serving academic and lay audiences; innovative educational offerings such as webinars and simulation-enhanced learning opportunities; a range of scholarship; media presence; and timely policy statements. It is anticipated that the Center for Neurodiversity may serve as a placement for the Master of Bioethics students to fulfill their year-long Capstone Project requirements, culminating in scientific poster sessions and scholarly publications.”

Overall, the symposium was very upbeat and positive. Attendance was good, and many people raised their hands when asked how many were neurotypical (NT) professionals who work with autistic people. Hopefully the information everyone shared will help professionals and employers better serve autistic adults, and make a significant dent in the distressingly high unemployment rate autistic workers face.

Later, at Dirt Coffee, Ryan mentioned that high unemployment rate. I asked for the WiFi password and it turned out to be a variation on the statistic of 90%. “Do you know why that’s our password?” Ryan asked me, looking genuinely eager to tell me the answer.

“Why?” I was genuinely curious to hear the answer. I had instantly liked Ryan. She is authentically friendly and made me feel welcome from the moment I walked in the door.

“Because 90% of people on the spectrum are unemployed or underemployed,” she told me.

The statistic I’ve always seen is 85% so I have no problem accepting that Dirt Coffee found a source citing 90%. What an important WiFi password, and opportunity for education.

Companies like Dirt Coffee and Blue Star Recycling, academics and researchers, writers and advocates, parents, adult autistics, and more are all working toward a brighter future for autistic adults. It was so uplifting to hear words of hope and progress at the symposium and so comforting to end my day at a coffee house that loves and values my neurotribe. We live in uncertain times. I am reassured when I see so many people working so hard toward so much good.

Rethinking Autism and "Picky Eating"

butterfly in a Planetbox bento lunch
Photo © Melissa | Flickr / Creative Commons
[image: Lunch box with each food type in a different compartment. Foods
include pretzels, jellybeans, raspberries, sliced cucumber, and
whole wheat sandwich bread in a butterfly cutout.] 


Seeking Sara
seekingsara174.wordpress.com

For as long as I can remember, I’ve been ashamed of what I do and don’t eat. The stigma of being a “picky eater” has followed me my whole life, bringing comments (and no small amount of exasperation) from family, friends, wait staff, and strangers.

I’ve recently been examining why I struggle with certain foods, and have come to the same conclusion as I have with much of my post-autism-diagnosis self-exploration: I’m actually incredibly strong, and my experiences are real and valid.

Why am I so “picky”? Well, if you could experience my senses for a few hours, I bet you’d be more understanding, less judgmental, and I’m fairly certain you’d stop using the word “picky” pretty quickly.

Often times, I want desperately to like a food, to be able to order anything at random, or to just eat whatever is put in front of me without hesitation. But for me, food is almost always a relentlessly overpowering experience.

It’s not just taste that’s overwhelming—so are texture, smell, color, consistency, and more. What if I told you certain foods literally hurt to eat? That some trigger vivid memories that are disorientating and distressing? That some foods make me nauseous and panicky? Throw in IBS, general stomach and digestive issues, multiple food allergies and sensitivities, and it’s actually pretty impressive that I eat at all.

Taste


I really struggle to eat bitter, sour, or spicy foods. Remember, all of my sensory input is dialed up and extra-sensitive, so what you consider overwhelming, is likely not the same as what I do. I’m not just being picky, and I’m not overreacting. I really am experiencing things more intensely than most people. What you might find pleasant with just a hint of a kick might feel like an absolute assault on my senses.

Also, my sensory input sometimes seems to go haywire and—for example—a bitter taste might register just like bile to me. No one else eating the same dish is having the problem, but I literally cannot eat another bite because it legitimately reminds me of throwing up.

Texture


Food texture is a huge factor as well. Texture no-gos for me include peaches, coleslaw, celery, Japanese konyaku, and warm peanut butter. I can’t really explain why some of these things are difficult for me, but the sensation of eating them can be so uncomfortable that my jaw locks up. This can be a full-body experience, causing pain, discomfort, chills, headaches, and tics if I’m truly required to eat something.

Too Many Tastes at Once 


Even if I like certain tastes, too many at once is also overwhelming. There are not many meals I order out that don’t include me saying, “I’d like the (meal), but without (list of ingredients). So basically just the (stuff I still want).” The things I take off make the difference between me being physically able to eat the dish, and literally not being able to eat it without melting down or extreme distress.

Conclusion


I debated making a list of all the foods I struggle to eat, but decided against it. Maybe some day I will, but for now, I still struggle with embarrassment from a lifetime of stigma related to what’s difficult or painful for me to eat—and I’ve decided to focus elsewhere.

I’m currently on a journey of self-acceptance and I’m finding it more productive to focus on my “Can Do” list than my “Can’t Do” list. I’ve come a long way in trying new foods, and I’m working on becoming more accepting that 1) I function differently and it’s okay not to eat foods that are difficult and 2) it’s actually impressive what I do eat, and I should give myself more credit.

Monday, September 24, 2018

On ABA: They hate you. Yes, you.

Amanda Forest Vivian
adeepercountry.blogspot.com

Content note: Includes discussion of discrimination and abuse by teachers and ABA practitioners, and a photo of a child in ABA therapy receiving an electric shock.

----

I always think about Danny, who was not really named Danny. It's too bad I can't use his real name because it's one of my favorite names. I'm sure he's forgotten me, but I can remember his name, his face, his favorite subway train, and the words he made up.

He was a kid I met this summer at the school where I interned. I have written about him several times, sometimes at length. And although he was my favorite kid at the school, that isn't why Danny is always surfacing in my mind, tiny in his big t-shirts, flinging himself around and reciting things.

It's through Danny that I found out for sure, this stuff is about me.

Because the first thing people use on us is always, "It's not about you." When I was a kid, when I first started reading about autism rights, it was so instinctive: of course it's wrong to say "cure autism now." Of course it's wrong to say autism is a tragedy, a disease, it's wrong to give kids electric shocks, it's wrong to say you thought about killing your kid in a video about eliminating autistic people from the gene pool. Like Sinclair says it's wrong to mourn for a living person. All this stuff was plain and clear and bright, and I was autistic, and I was being attacked.

Right?

Well, not to anyone else.

Because, of course, if I told anyone I was autistic, they said I was lying, or I had a different kind of autism that made me smart and talented, so I wasn't like Those Kids, the kids who needed to be cured. And that I should think about their parents, about the money and time to care for a person like that, about the dreams that are shattered when your kid is really autistic—not smart autistic, the real kind.

So in my late teens when I put myself through my paces, when I figured out my deficiencies and set myself to systematically eradicating them, one of the deficiencies I eradicated was my use of the word autistic. Because you shouldn't use words people don't understand. And you shouldn't use words that will make someone feel bad, someone who has a kid who's Really Bad, Really Disabled. Because you're not that.

And I met some autistic kids and they were not much like me, and I didn't know to apply what I knew about myself to them, because I couldn't see what they were feeling inside. But I liked them. Then I met some people with intellectual disabilities and I liked them too; after a brief nervousness because some of them looked so different from me, and made noises I didn't understand, it was easy to like them. They were people who liked things, some of them the same things I liked. I could see that they weren't on the surface very similar to me, but I liked being around them almost more because of that, because it made me feel happy and chastened to misjudge them again and again. To be proven wrong when I thought I could quantify them just because I knew more words.

So by this point, I was pretty much sold, even if I wasn't Really Autistic, on the idea that people with developmental disabilities matter. Because I was around them all the time and it was obvious they mattered. But still, I felt my position was that of an outsider, an ally. I had opinions, but I didn't necessarily feel that I had much right to talk about them; I didn't feel I had as much right as the parents or teachers of people with developmental disabilities.

And then I interned at this school.

And I started out thinking: wow, ABA is so cool. I've heard negative things about it from other Not Really Autistic people, but who am I to talk about what these Really Autistic kids need? They can't even talk. They might bite themselves or something. What the hell do I know about that?

And then I met Danny and the other kids in his class. High-functioning kids. Verbal kids.

Tony, who had been nonverbal a few years before, was incredibly hardworking and sweet. When he went into the school director's office and turned out the lights as a joke, I laughed, but she said, "Tony. Look at my face. How do you think that made me feel?" She stood there looking grim until he apologized.

James was stressed out and upset; one of his teachers leaned towards him, staring fiercely into his eyes, talking with cold, strained-sounding words, the kind of voice I called "static" when I was a kid. James looked scaredly back at her, wriggling his hands around in his lap. "James," she said. "I know you're upset. But what you're doing with your hands looks silly." This boy, all the tension in him being channeled into something harmless, something she had to look under the table to see. His tension was silly. His discomfort was an inconvenience. He was eight or nine years old.

And Danny with his words. "Danny's an interesting kid," the school director told me. "He likes to be in charge." Danny and I were walking, holding hands, and when I responded with concern when he told me he was tired, another teacher told me, "He's playing you." It's true that Danny was a bossy little boy; when we played restaurant, he replied, "No, we're out of that" again and again until I ordered the food he wanted to pretend to make.

And his love of subway trains spilled out everywhere. He was supposed to write a story about a sad princess, and he did, but half the story was about the princess's friends taking her on the subway to cheer her up. He was supposed to write a crossword puzzle and the clues were things like, "Transfer is available to _____ North." The school was full of subway maps, since many field trips involved subways, and Danny would sometimes just lean over a desk, pressing his face into the shapes and colors, whispering his favorite schedules to himself.

Danny just liked words. When he was using his special words, the weird words he scrounged for or made up himself, he would find himself jerkily hopping across the room, speaking in a squeaky voice, his small face tense with excitement. "Presentation" was a weird word for movie, "document" was a way to talk about the letter he had typed on the computer for his parents. "I went to the barber," he said when I commented on his newly short hair, and then, with a rush of joy, "!but I like to call it the hair shop!"

I like words too. It was hard to watch Danny's teachers nudge him, sit down with him, say, "Danny, the word 'presentation' is a little weird; you need to say 'movie.'" It was hard to watch the way they looked at him, pointedly, until he stilled his hopping and lowered his voice to a more standard pitch. When Danny found out my middle name is Wood, he completely tripped out on it, hammering pretend nails into my stomach and giggling, "I'm gonna build something out of you!" "Danny," a teacher said, "don't be weird. You and Amanda were talking about names."

It was the word 'weird.' Nothing foreign my whole life. Tracing words and shapes in the air, crossing myself, my mom asking me a lot of questions, "Have you been feeling the urge to do that lately? Why do you do that?" with so much static voice it was clear I'd better keep my hands as still as possible when she was around. Running jerkily up the stairs at school, I couldn't help myself until I was fifteen or sixteen, despite the older boys laughing to each other—"is she trying to race you?" Movement just consumed me that way. And being a thirteen-year-old who said "suppose" and "quite" when no other kids did. Just loving words too much, finding it hard to stay away from the strange ones. And getting too excited. Being weird is not that alien for me.

So my divisions broke down a little, because I was watching a kid just like me, and I was learning, in very specific, qualitative terms, what other people thought of people like me. I was so nervous about keeping myself still and using the right words because I thought they wouldn't let me intern there if they knew I was actually like Danny, that I didn't think he was weird at all. All of Danny's teachers had been taught to grimace and say how annoying it was when he talked about trains. They watched The Office, but they never ever laughed when Danny told flat, self-referential jokes on purpose, twisting the ones he had been trained to say. I thought Danny was funny. Every time I talked to him I felt nervous about doing something that his teachers would think was wrong, and I also felt bad about perpetuating the attitude he was being taught, that none of the things he loved mattered.

So from specific to general, from Danny to James and Tony, to Max and John. John's teacher made him walk, in stiff, clean steps, and if he started doing anything that looked like skipping or jumping, she grabbed his arm, said "No," forced him again and again. Max liked to move his arm in circles while he was watching TV, so he was hauled off into an office, pushed down into a chair, had mouthwash forced into his mouth while he cried. They told me they were narrowing it down, he was moving less and less. Max and John didn't talk. James and Tony didn't talk as well as I do. But I move too much, and I move wrong, especially when I was a kid, and in that school I saw what they do to kids who move wrong.

I realized that, actually, a lot of it was about moving wrong. Or talking wrong, if you could talk. Or just taking too much initiative--wanting to make up songs, like Danny did, or playing a practical joke, like Tony did. That these kids looked and acted different and the school wanted to control them and make them as still and docile as they could possibly be. Watching them treat hopping, rocking, and neologisms like you'd treat a bomb on an airplane--it was like being at summer camp with a kid from the south, sitting in a car uncomfortably while he said he'd kill a gay person if they ever came near him. Wanting to say, no, it's not anything important; I'm like that, see? But I didn't talk in the car, and I didn't talk in the school.

This is too long. It's hard to even explain it. I just have to say, for the millionth time, that this whole functioning level thing—yes, it matters in certain ways. I can buy and cook food for myself, while high-support autistic people probably can't. I can hide the way I move and talk better than other people can. But this doesn't really have much to do with politics, because when people claim that "cure autism now" and the disease model and the Judge Rotenberg Center are not about me, well I beg to differ. The only reason they're not about me is that I'm old and verbal enough to not be vulnerable to that kind of abuse. They would be all too happy to practice it on me if they could. Autistic people do not get abused because they are low-functioning, they get abused because they do weird things.

So, the old-school ABA trials? With Lovaas?

This is a kid getting an electric shock:

[image: Black-and-white photo of an autistic child
receiving an electric shock as part of ABA therapy.]

This is why:

[image: black-and-white photo of a child who is
stimming by holding their hand in front
of their face, and also toe-walking.]

If you were in the wrong place at the wrong time, the wrong age, the wrong functioning level, this could be your life.

This what people like them think about people like us.



This post was originally published at adeepercountry.blogspot.com.

Author's disclaimer: This is a nine-year-old post and when I wrote it, I didn’t have close Autistic friends or much familiarity with self-advocacy or disability rights, except from reading. I don’t disagree with anything I said, except the part about being able to cook, but I would say a few things differently.

1) I obviously can’t speak about all ABA therapists/techs or schools. I will share a story though! When I was first blogging and vlogging about my internship experience, I exchanged messages with an ABA therapist who agreed that the school I interned at was doing certain things wrong, and recommended a better ABA school for me to intern at.

It was the same school.

2) I once read a thread of Autistic people discussing this post on a forum, where people criticized the post for speaking about the staff at the school as a monolith. But I want to clarify that—at least at this school, but I gather at ABA schools in general—they were a monolith by nature. All the teachers and staff had to follow the behavior plan which targeted the child’s “behaviors,” like stimming, neologisms, skipping, etc. and outlined how the child was supposed to be punished for doing those things. Teachers or staff weren't allowed to act in a way that deviated from this. So this is one case where saying “the staff did such-and-such” is not a generalization but just correct.

Sunday, September 23, 2018

Review of Killer Caregiver (Lifetime Movies)

[image: Promotional graphic for the movie Killer Caregiver, with a black
background, a woman's face with a malicious expression and a red filter,
and bright orange block letters reading, "Killer Caregiver".]

autisticaplanet
through1filter.blogspot.com

Content note: Some plot spoilers, mentions of violence.

Killer Caregiver stands out from the rest of Lifetime Movie Thrillers. First of all, the adults in the movie actually dress and act like believable adults, not petty, spoiled man-boys or woman-girls—though they do live in a McMansion like nearly every Lifetime movie family in the 2000's through the present. This thriller also differs from the Lifetime norm as the main character Mariah's son, Jacob, has autism.

When a male client makes an unwanted aggressive advance on Mariah (Nicole Hayden), she jumps from her van in an attempt to escape. He then becomes pinned to an entrance gate by the rolling-in-neutral car. He dies and Mariah survives, though she broke her arm while trying to free him.

In the next scene Mariah is trying to work one-handed from her home office. Jacob is heard (Jaeden Bettencourt) yelling, "Mommy!" a few times from another part of the house, and unwittingly disrupts him mom's video meeting with her boss.

We then see Jacob, a white boy who looks about nine years old, and who has sandy, longish, blonde hair and hazel eyes. He is clad in doctor's dress up clothes, with a stethoscope around his neck. He enters the room where his mother is working, and hesitates as his mom greets him and lets Jacob examine her broken arm.

Jacob is a stereotypical portrayal of an autistic boy in looks, motor clumsiness, and selective mutism. He is not the stereotypical portrayal of an autistic boy in that he makes prolonged eye contact with those speaking to him and clearly shows both cognitive and functional empathy, as demonstrated when he knocks over a glass of milk, stressing out his mom, who is on the phone. He rocks and cries until Mariah comforts him saying “It’s okay, buddy.”

Mariah decides she needs a caregiver to help her while her arm heals, and hires a woman named Tess, who (spoiler) is really not a caregiver, but the daughter of the man who tried to force himself on Mariah and then got crushed by her van. The shy and sensitive Jacob opens up to Tess, who uses him as a pawn to worm her way into the family. While this plot twist is a common one in the Lifetime revenge plot genre, Jacob’s autism puts a new spin on it.

A disabled handyman, Eugene, who does yard work for the family, suspects that Tess is trouble and tries to alert Mariah, even though Tess tries to stop him by yelling at him. Eugene goes to Mariah, but she is on the phone so Eugene waits for her to end the call. Meanwhile, Tess puts a power cord along with Jacob’s red kite into a mud puddle. Jacob gets a slight shock that could have been an electrocution if Mariah hadn't come running, grabbing her son just in time. Eugene is the one who then wrongfully loses his job for being careless.

I noticed Eugene became unable to speak when Mariah confronted him, asking him questions and accusing him of not watching out for Jacob. This is part of why he is unable to defend himself, and gets fired.

Whether Eugene is autistic isn’t brought up. Mariah only tells Tess that she found Eugene through a charity that pairs disabled adults who are “high functioning” with disabled kids. Eugene is very verbally shy and vulnerable. (I hate the broad use of the term “high functioning,” as I think it diminishes the struggles autistics with average to above average IQ face.)

I think that Jaeden Bettencourt does as good a job (for not being autistic) in portraying a sensitive and bright autistic boy with a love and talent for drawing. And it is one of his drawings that helps Mariah figure out where Tess took Jacob, after she kidnaps him by luring him out of his bedroom using a reflective mirror and the red kite.

Mariah realizes that Jacob is at Tess’s parents' home, arrives, and then discovers the noose Tess’ mom hanged herself with (after finding out that her husband had been killed in the van accident while trying to assault Mariah). Tess means to use the same noose to kill Mariah, but Jacob, who was told to go into another room by Tess, appears, grabs a baseball bat, and strikes Tess on the head, knocking her out. This frees Mariah and the police come, arresting Tess. Jacob gets to be a hero.

The movie ends with Mariah and her husband Greg (upon whom Tess does her own twisted number), renewing their vows in an outdoor ceremony. Eugene and Jacob both are included in the ceremony, Eugene in the Best Man role. I was relieved that Eugene was welcomed back and included.

Killer Caregiver contains no rant bemoaning raising an autistic child, nor does it have references to cure culture organizations as did another Lifetime movie, “Jack of the Red Hearts” (which also had a non-autistic actor playing an autistic child, though one who also does a fantastic job just as Bettencourt does in “Killer Caregiver”).

I would like to call on Lifetime to cast actually autistic actors in their movies. I would also like them to stop glamorizing acts of violence by mentally ill characters, especially when those actors aren't openly mentally ill. Portraying nearly all mentally ill characters as murderous psychopaths further stigmatizes people with mental illnesses.

In my opinion, “Killer Caregiver,” despite the cheesy title and misleading notions that it might be a plot about a caregiver killing an autistic charge, is a movie worth the watch.

Friday, September 14, 2018

What Is Light Sensitivity Like for One Autistic?

10mm Lightning
Photo © Jasper Nance | Flickr / Creative Commons
[image: Photo of lightning exploding in a purple night sky above silhouetted conifer trees.]
M. Kelter
theinvisiblestrings.com

I've had a life-long aversion to lights. I wanted to share what this means in terms of the subjective experience, and how this sensitivity generally seems to operate. The concept of a sensory aversion is probably self-explanatory, but it can include more subtle effects that may not be as apparent. I've noticed two primary factors that can cause my eyes to feel pain (no surprises here): brightness levels, and sudden changes in lighting.

What are the types of "pain" involved, specifically? This can vary. Certainly an intensely bright light can cause a sharp pain, but that's probably true for many people. Let's define "intensely bright" as something akin to a camera flash. That can cause a sharp, stabbing pain, and that pain can persist for minutes or hours. It's worse in the moment of the flash, and slowly fades.

Sharp pain isn't the most common eye discomfort I experience, though. The kinds of lights that I come across most frequently—lighting in a room, for example, or overhead lights in public spaces like a grocery store—tend to create a dull, persistent ache. The pain is like a warm burn that hurts in a lasting, nagging way. The pain isn't as intense, but it is draining. That seems to be the biggest negative impact of my light sensitivity, even more than pain: the more my eyes experience a lasting ache, the more my energy level and mood plummets.

In settings where I'm unable to control the lighting, I'm basically on a timer. At some point, I'm no longer going to be able to think clearly, or have the energy left to complete tasks and function. Almost every action I might take in the course of a normal day involves mentally calculating what the lighting will be like, and how long I will be able to tolerate it. Trips to the store, social events, driving during the day and so on: any activity requires forethought regarding lights and the inevitable energy/mood crash. Again, the pain is uncomfortable, but it's the impact on my energy level that creates the biggest hurdle to daily functioning.

The other factor at play with this sensitivity is sudden changes in lighting. Even in locations where the lighting is not too bright, sudden changes in lighting will create pain and a few minutes of blurred vision. This can happen when lights are suddenly turned off, or on or when I'm walking between rooms that have different levels of brightness.

If one room has comfortable lighting and I walk into another room that also has comfortable, but different, lighting, the change alone is enough to trigger pain. It's more in the category of "dull ache," but it's an unwelcome pain and usually results in at least a few minutes of impaired vision. This also takes a chunk out of my already-in-short-supply energy level.

Also, the visual disorientation can often lead to physical mishaps. It basically looks like clumsiness, but it's more specifically about the change in brightness level and blurred vision. Tripping over unseen objects, knocking over lamps, stumbling into walls—I have a long standing habit of exiting a dark theater into the brighter lobby and plowing directly into a crowd of people: this is all a reliably embarrassing byproduct of the issue with abrupt lighting changes. (For better or worse, I've learned to pretend-laugh and feign nonchalance when these things happen, since people rarely understand what's really happening and think it's funny.)

At any given time, I have to pause and give serious consideration as to whether or not turning a light on or off, or walking to a different room, will be worth the discomfort. I think for most people, this can seem like a minor thing, but in the course of a day, even minimal differences with lights can add up to a substantial impact.

One side note: in addition to pain, lighting discomfort is usually accompanied by a visual effect, a imprint of the light that can hover in my vision for several minutes, sometimes hours. Visible bulbs for example, or rays of light from windows or other sources, can imprint a visual "memory" of that light in my vision, and it can take some time for that imprint to fade. I'm sure there is a more scientific way to describe this, but subjectively, it's like a bright little ghost that stings my eyes for as long as the impression lasts. It's not uncommon to go to bed each night, close my eyes, and spend 20 to 30 minutes waiting for the day's accumulation of light imprints to fade. Lights can both make me tired, and make it hard to sleep.

What helps manage sensory pain like this? Honestly, not a lot, but there are some measures that provide a degree of comfort. Pretty much all of them are what you would expect.

Wearing sun glasses doesn't eliminate the pain, but it does function as a kind of dimmer. It turns the discomfort down a notch or two, which can make a meaningful difference when it comes to energy levels and mood. I wear prescription transition lenses that darken in response to sun light. That helps. A little. (I wish I had less obvious things to say here.)

This second strategy is not recommended, because it involves a major shift in life style—but I personally decided to work overnight jobs as much as possible. For the first 15 years of my adult life, I exclusively worked graveyard shifts that allowed me to sleep during the day and be more active during darker, more comfortable hours. Again, this is not recommended and is not always an option, but I just decided that it was necessary in my case. The change was beneficial in terms of light issues, but it didn't do great things for my social life. There were other downsides; sensory aversions involve a lot of lifestyle choices and cost/benefit analyses.

There are more shades of discomfort and pain-triggers than I can go into here, as this is just a brief overview of light sensitivity, from a subjective angle. It goes without saying: other people with this issue may very well experience it in a different way. I can only speak for myself and hope that sharing this information is in some way useful to those wanting to know more about the day-to-day impact of sensory issues.

Thursday, September 13, 2018

I Might Be You / Neurodiversity: A Review of Two Books

[image: Cover of the book "I Might Be You,"
showing two seating white women facing
and engaging with each other.]
Maxfield Sparrow
unstrangemind.com

I Might Be You: An Exploration of Autism and Connection (2012) By Barb Rentenbach and Lois Prislovsky; Audio version (2013) read by Lois Prislovsky PhD and Ariane Zurcher

Neurodiversity: A Humorous and Practical Guide to Living with ADHD, Anxiety, Autism, Dyslexia, The Gays, and Everyone Else (2016) By Barb Rentenbach and Lois Prislovsky; Audio version (2016) read by Chad Dougatz, Lois Prislovsky PhD, Carol Riggs Holloway, John Bond, and Jery Yarber

I read “I Might Be You” in 2014 and loved it, but never thought to review it back then. When I discovered that Barb Rentenbach and Lois Prislovsky had a second book out, I got it in an Audible version and, on a whim, decided to get the Audible version of “I Might Be You” as well, and re-read it before reading “Neurodiversity.” I am so glad I did, because the Audible versions of both these books really shine.

Barb Rentenbach is an autistic woman with unreliable speech who types to communicate. Lois Prislovsky is Barb’s therapist and friend. The two alternate chapters in “I Might Be You,” talking about autism from Barb’s lived experience and Lois’ experience as a professional and friend. While Barb chose Ariane Zurcher to be her voice in the Audible book, Barb’s own voice comes through the words loud and clear. Barb is brilliant and playful, simultaneously jokingly boastful (after all, if you have such fabulous hair wouldn’t the world want to know about it?) and humble, refusing to take herself too seriously—and advising readers to do the same.

Anyone who might be afraid that Lois would talk over Barb need only read or listen to a short excerpt to realize that Barb has a dynamic, funny, larger-than-life personality that can’t be pressed down or spoken over. The hours I spent with Barb’s voice, as rendered by Zurcher in the first book and Chad Dougatz in the second were a joyful encounter with a woman I came to admire and love. Side note: given Barb’s playful comment in the first book about not having spent time as a boy… yet…I was delighted that she chose a masculine voice to read her words in the second book.

As far as I know, Barb is not trans. But she describes the ways she is not entirely tethered to her body, not the way so many typical people report. It is clear to me that Barb can—and probably does—“visit” being masculine in ways I can only envy. Barb knows she is connected to the “marshmallow” body, as she laughingly describes her zaftig frame, butt she also speaks lucidly of mystic transport to realms that are beyond words and beyond physicality. She calls it “going inside her autism,” and though it is hard to wrap words around a state of being that is beyond words, she does a great job of introducing us to the splendor of her world.

But Barb doesn’t give a one-sided view of autism. She doesn’t mince words when she describes herself as having “autism: the hard kind.” And she doesn’t hide her struggles. Barb writes openly about biting herself, biting her beloved Lois, screaming, breaking things, and even smearing shit. She knows how she comes across, even though she can’t help coming across that way. Barb describes herself as being “disguised as a poor thinker.” While she claims that she’s done trying to convince the people who say that her facilitated communication is some kind of puppet show that she is really “in there,” these books are a testament to just how in there Barb is.

I know I keep going on about Barb and saying nearly nothing about Lois. I suspect Barb would find that amusing as she’s always conducting a bit of a stand-up routine using Lois as her straight man / fall guy. Barb would probably laughingly say that I’m focusing mostly on her because Lois is sadly just not as interesting. I assure you that Lois is plenty interesting and gives a lot of great tips for other teachers and therapists, but let’s not try to kid anyone: Barb is the undisputed star of these books.

There are some repeated passages from the first book in the second book. Barb explains the two-fold reasoning: repetition aids learning and she and Lois really want you to learn that autistic people who don’t speak or are “disguised as poor thinkers” deserve a presumption of competence. You could assume someone is “in there” just as easily as you could assume they’re not, but the more respectful and human choice to make is to presume competence at all times.

The other reason for the repeated passages is that Barb types so slowly that some chapters took many months to write. The first book took ten years to write and the second took “only” four. Barb types with one finger. She’s aiming toward fully independent typing (which should hopefully shut up the remaining naysayers) but it’s really hard, and takes a lot of energy to focus. Over the years, Barb’s work with facilitated typing has improved her skills to the point where she just needs a hand pressed against her back to get her body-machine moving and typing. It seems a small thing—a hand on the back—but it makes all the difference when it comes to Barb’s struggle against apraxia.

Barb types only a few words per minute, and points out that when writing is so slow and difficult it makes sense to recycle some of the words. I agree and I felt that the amount of repetition from one book to the next was not too much for me. The second book was very much worth getting, with enough new material and re-contexting of old material to make me feel satisfied that I’d gotten a new book with its own theme and purpose.

The first book, “I Might Be You,” is more of an introduction to autism, while the second book, “Neurodiversity” tells more comic stories and has more advice for all sorts of neurodivergent people. Since Lois has ADHD and dyslexia and is a lesbian, Barb jokes that Lois has more to say in the second book, having more neurodivergent traits than Barb (who laughs that she gets to be the normal one for a change).

People sensitive to language might struggle in some points during both these books. For example, Barb doesn’t do anything to soften the R-word. I wondered if she’d gotten criticized for that because the second book opens with a mention of political correctness and a warning that the book would NOT be politically correct.

I can’t speak for anyone else, of course, but I have no quibble with Barb’s and Lois’ choice to be blunt with word choice. Were there things that would be “politically sensitive” in some circles? Oh, yes. Was there any disrespect toward any human being? Well, other than the slightly mocking response Barb wrote to the man who claimed she couldn’t have “the hard kind” of autism because she wouldn’t be able to read, write, or think (she decided the best pseudonym for him was a tittering “Dick”), I spotted no disrespect toward anyone. In fact, Barb expresses a spiritual love for all humanity (“God cares about us all through us all”) and a love of the gifts autism has brought her (“Autism is my prism, not my prison”).

Speaking of spiritual matters, I would love for Barb to write a book entirely about spiritual matters. I’ve already mentioned that she has a mystic’s vision. Barb also has a theologian’s academic knowledge of religion. I found her discussions of spirituality some of the more fascinating passages.

I heartily recommend these two books as well as the “Loud Mute Radio” show Barb and Lois host. You can learn more about Barb and Lois and listen to Loud Mute Radio at Barb and Lois’ website: muleandmuseproductions.com

Friday, September 7, 2018

Off the Rails: A Documentary About Darius McCollum: A Review

Maxfield Sparrow
unstrangemind.com

“I have spent more than half my adult life in prison.” -Darius McCollum.

Darius McCollum, a Black Autistic man now in his early fifties, was first arrested for “stealing” trains in 1980 when he was 15 years old. Documentarian Adam Irving discovered McCollum on Wikipedia, was fascinated, and tracked down McCollum while he was in Rikers Island Prison. The two exchanged letters and phone calls for six months, and finally met while McCollum was still incarcerated. After McCollum’s release, the two spent three years filming the documentary. 


I put the word stealing in quotes—even though that’s a word I’ve seen McCollum use for what he does—because that’s not what his actions look like to me. He’s not “hijacking” or “stealing” transit vehicles so much as illicitly operating them… and even then with careful consideration for human safety. McCollum’s deep interest in transportation was encouraged by New York City transportation workers who thought he was a cute kid, and sort of adopted him without thinking about the long-term repercussions of breaking the rules with him. As workers got more and more lax about the lines they were crossing, McCollum’s fate got woven tighter and tighter into the net he’s trapped in today.

I was eager to watch Off the Rails because I have been following Darius McCollum’s story for decades. I had also never heard McCollum speak before watching this film, and was immediately surprised by how well-spoken he is. I hate to admit my bias, but I didn’t expect someone who has spent half his adult life in prison to be such an open-hearted person, and such a clear and compelling communicator. We all have our preconceived notions to get past, and I’m grateful McCollum helped me see one of mine.

Reflecting on my reaction and its larger implications, I realized that this is how deep the vulnerability of being a Black Autistic man goes: so far down that being a kind and personable human being and a compelling communicator could not save him from getting boxed in by life’s circumstances and getting arrested and imprisoned more than thirty times, instead of getting the help he’d requested for years.

When I stop to think about how law enforcement and the criminal justice system tend to deal with Black Autistic men, I realize Darius McCollum is lucky to still be alive.

Off the Rails is beautifully shot, and sensitively arranged. Darius McCollum comes across as genuine, likable—and very aware of his compulsions. I liked his matter-of-fact, deeply honest take on his transit activities: He knows what he does is illegal but somehow he doesn’t come across as a scofflaw. He cares about the passengers on the vehicles he drives, and he thinks about how to brighten their day and help them understand they’re not just on a train ride but an adventure. Off the Rails made me care about Darius McCollum’s fate on a deeper level than I had before. Anyone who cares about the fate of Autistics in the justice system in general or Darius McCollum’s case specifically should watch this film.

Through the course of the film, I slowly began to get a feel for McCollum’s soul-deep connection to the transit system. He memorized the subway when he was eight years old, and in many ways considers the subway his home. He even says he’s married to MTA. Other people who got to know him describe his dedication to providing quality service for passengers as something benevolent and committed. People from all walks of life spoke of Darius McCollum as being extremely likable, affable, gregarious, and just a nice guy—despite a lifetime of being mistreated and misunderstood.

When McCollum was twelve or thirteen, his parents had him committed for nine months. (This was following a traumatic event at school.) Despite his young age, he was given electroshock therapy while in the hospital. After he was released, he felt he couldn’t trust anyone at school, and instead just wanted to be where he felt safe and valued: the subway. Transit workers took a liking to Darius and had him run errands and do chores for them. He was friendly and eager to make everyone happy.

When a transit worker let Darius drive the train for the first time, the feelings of acceptance and self-worth he felt were so powerful they determined the course of the rest of his life. Darius would do anything to get another taste of that feeling: the feeling of being exactly where he was meant to be, doing what he was born to do: drive trains.

Sadly for Darius McCollum, the city of New York held a different view. McCollum applied to work for the MTA when he was 17 and again when he was 18. Both times he was turned down. The documentary didn’t explicitly say so, but Darius assumes (and I agree) that the MTA didn’t want him after he had been arrested at age 15 for driving a train. Darius McCollum’s arrest generated a level of publicity that was hard for MTA to live down. The only thing Darius wanted was to work for MTA—and that was the last thing MTA wanted.

His life then turned into a revolving door between driving and jail. McCollum had lockers in the subway and slept at stations or in train yards. He drove buses and trains nearly every day, but he’d only drive a few months at most before he’d get caught and sent back to jail yet again. He never stopped pursuing his dream of working in transit, whether he had a transit job or not. Thirty years of devotion to his passion is not a phase or a whim: every fiber of McCollum’s being yearns to serve the public as a transit driver.
“He sacrificed his freedom and he sacrificed half his life for this. If that’s not love, I don’t know what is.” -Ray Sanchez, Transportation Reporter, Newsday
McCollum’s story was perennially interesting to the New York Post and other media outlets, and when he brought his Asperger’s diagnosis into the courtroom—trying to get the treatment he needed as a disabled person who needed help with his impulses to drive buses and trains—the media exploded all over again. The disclosure backfired when McCollum ended up with a deadbeat lawyer he was not able to fire. The judge said that his Asperger’s diagnosis meant McCollum was not fit to manage his own affairs, and not of sound enough judgment to fire his lawyer and try to get one who would actually fight for him. As if that weren’t bad enough, the next judge McCollum got did a Google search on Asperger’s and decided in her own (very non-expert) opinion that Darius McCollum couldn’t possibly have Asperger’s or any compulsion out of his control and ruled harshly against him.
“The best outcome for Darius would be for him to be hired by the MTA.” -Marcia Scheiner, Autism Employment Specialist
That, of course, is never going to happen. The MTA has made it clear: Darius McCollum is not to be trusted. That leaves McCollum outside his proverbial gates of paradise, banished into the wilderness forever.

He did eventually get rid of the deadbeat lawyer, replacing him with Sally Butler, a lawyer who was initially skeptical of McCollum's case but grew to become one of this greatest supporters. His parents also deeply love and support Darius but were forced to do so from a distance: they moved to North Carolina, hoping to get their son from the trains, only to have the justice system restrict McCollum to New York as terms of his parole—effectively leaving him trapped with the objects of his compulsions, the trains, and stripped of the supportive presence of his parents.

The documentary tries to end on a positive note, with Darius McCollum finally out of prison, finally not on parole or probation, and finally able to move to North Carolina to be with his mother. He’s uncomfortable but adjusting and decides he’s 50 years old and it’s time to be done with trains … but then three months later … Darius McCollum is arrested yet again, this time for driving off in a Greyhound bus. The documentary closes, saying he’s currently on trial and facing fifteen years.

That was November of 2015. What has happened in the two years since the close of the documentary?

Because McCollum had three felonies already for illegally driving trains and buses, he actually faced 25 years to life in prison for stealing the Greyhound bus. A year after he took the bus, his lawyer turned down a plea that would have offered three and a half to seven years in prison. Prosecutors pitched the same deal two more times, then switched to a 5-10 year deal that would have required McCollum to plead guilty to second-degree larceny. That deal was turned down as well.

McCollum sat for two years in Rikers Island during these offers. Near the end of 2017, McCollum and his lawyer were offered an insanity plea that would result in McCollum being locked indefinitely in a prison for the criminally insane. This plea, too, was initially refused. Prosecutors were not pleased that McCollum was pushing proceedings toward trial instead of negotiating.

But just before trial started, McCollum finally accepted the insanity plea in January, 2018, and was sent to Kirby Psychiatric Hospital on Ward Island while awaiting a special trial. McCollum would be examined at that trial by doctors who would determine the course of his incarceration. If McCollum were judged to be dangerous, it would affect his commitment. If he were deemed dangerous, he might spend the rest of his life in a maximum security facility. If he were not considered a danger, he could go to a lower security hospital and get the treatment he’d been asking for. His mother could visit him, and he would be in an environment aimed toward his rehabilitation.

That special hearing began in May, 2018. McCollum took the stand and when asked how many times he had commandeered trains and busses he responded that he estimated he’d driven about 5,000 trips illegally. Meanwhile, Hollywood is planning a movie about Darius McCollum, called Train Man. Julia Roberts may even play McCollum’s lawyer, Sally Butler.

MTA has filed suit against McCollum, citing law that says a criminal may not profit from his crime. MTA is filing as the wronged victim and demanding McCollum’s cut of any proceeds from the Hollywood venture. On May 30th, McCollum’s lawyer posted on Twitter: “Prosecutors questioned Darius today about a pillow fight with his roommate at the psychiatric hospital, and tried to use that to suggest he was dangerous. Really, a pillow fight?”

The special hearing continued into June. McCollum’s lawyer quit updating the Twitter feed. No news stories have been published. I am unsure where Darius McCollum currently is, or what his fate might be. I worry about him. He doesn’t belong in prison or in a rough criminal psychiatric hospital. At one point his lawyer asked to have him moved back to Rikers Island because it was safer than the hospital, where Darius had already been attacked. Kirby Hospital is notorious for housing the most violent criminals.

The justice system failed Darius McCollum. He never got the therapy he needed, and repeatedly asked for. Everyone, right down to Darius himself, agreed that he needed treatment for his irresistible compulsions, but instead he just got locked up repeatedly. After the 9/11 attacks, McCollum helped Homeland Security and MTA authorities discover and seal the weak places in the transit system that were vulnerable to terrorist attacks. Then the city “rewarded” McCollum for his compliance by denying his freedom on the grounds that he was too eager to help Homeland Security and would be just as eager to help a terrorist.

After over three decades of notoriety and even a bit of celebrity, Darius McCollum has vanished from view. May he be well and may we never forget the lessons he has taught us at such high cost to himself.

----

Off the Rails is a 2016 American documentary film about Darius McCollum
Written, directed, and produced by Adam Irving
Zipper Bros Films, 1 hour 30 minutes
Available through Amazon
www.offtherailsmovie.com

For further information about Darius McCollum and his case:

www.freedariusnow.com

Saturday, September 1, 2018

Hoshi and the Red City Circuit: An Excellent Debut by a Neurodivergent Author About Neurodivergent Protagonists

[image: Illustrated cover of the book Hoshi and the
Red City Circuit, by Dora M Raymaker,
featuring a person in silhouette sitting
on the ground fending off rays of power from
a pitchfork-wielding person silhouetted in red.]
Kelly Israel


Introduction


Hoshi and the Red City Circuit, the debut work by Dora Raymaker, is first and foremost an excellent page-turning detective story about private investigator Hoshi Archer’s race to discover who murdered three Operators. Operators are a caste of people with disabilities. They are also the only people who have the ability to run the multi-layered, complex technology of the future. It is next a story about Hoshi herself and the many friends, allies, acquaintances, enemies, and lovers she has known and cared for on her way to becoming the person that she is.

Hoshi is also a story that grapples with the intellectual and developmental disability (I/DD) community’s ghosts and collective past. It attempts through showing—rather than telling—to explain how it is that an individual person with I/DD can live in a world that alternatively hates and pities them, loves and loathes them, supports and exploits them.

This is important because we are a community with a painful history. Many autistic people and others with I/DD have experienced terrible ableism as well as both emotional and physical abuse, often at the hands of the very people who were supposed to help us. Hoshi echoes this sordid history in many of its plot threads, and thereby explains it via fiction to those who do not have it burned into their flesh and bone. Above all else, it is a complex and interesting read.

The Positives


One of the primary characters of the book besides Hoshi (both literally and metaphorically!) is the place where Hoshi lives—The Red City. (I won’t spoil for you how the Red City becomes a literal main character.) The Red City exists in a human civilization of the extremely distant future, on a non-Earth planet with its own intricate politics, social constructs, crime syndicates, and religions.

Dora Raymaker made me love the Red City. It is to the author's credit that The Red City has a clear and unrelenting sense of place. I never once was given the impression that it was an artificial or simplified construct. The history of Red City began long before the reader got there, and it will continue long after the reader has left. It has its own slang, look, and feel to its culture. The people of the Red City are take-no-shit-from-anyone hardworking police officers, exhausted dock workers trying to make a living, arrogant no-nothing jerks, criminals and crime lords, and esoteric mystics who commune with very real aliens that live on a different plane of existence from us. Hoshi Archer’s own description of how Red City looks from her window describes it best:
"Outside my cathedral window, the jagged skyline of Red City reached for crimson clouds. I traced the graceful spiral of the Arts and Culture Building, the triple towers of the 100 Worlds Trade Union joined by their series of sky-bridges, the prickly quills of the Red City Reporter, the dip of Lan Qui Park all the way down to Landing and Marcie Bay. I loved Red City. Loved every street corner and sky-lift, every tree in every park, every rumbling tube beneath her crust." -Hoshi and the Red City Circuit, Ch. 1
It’s worth pointing out that Hoshi repeats something similar to this description many times. She, at any and all opportunities, describes her read on the history of each quarter of the city that her investigation takes her to. Beholding her favorite buildings in the city is both satisfying, and likely a form of stimming. It’s fun and exciting to listen to her and find out what she knows. Raymaker could not have picked a better special interest for their protagonist.

Dr. Raymaker makes no attempt to hide that, although the Operators have a fictional developmental disability known as K-Syndrome, they are very much intended to be similar to autistic people and others with intellectual and developmental disabilities. Only a few years ago, all Operators were slaves forced to do nothing but program and operate the future-tech machines and linked Internet-like space called the Mem that keeps Red City running. They were feared for their fine-tuned control of this space, and yet were absolutely necessary for its functioning. Their connection to it was deliberately limited by oppressive rules and regulations that bear a probably intentional similarity to those that govern institutions in the United States. In the present, due to a law known as Integration Law, Operators like Hoshi can work non-Operator jobs. It is an uneasy compromise, with both Operators and non-Operators alike having a variety of different opinions on the rightness of the law and whether it achieves its goals.

Hoshi Archer is an attractive, interesting, lovable neurodivergent protagonist. She is a brilliant detective, able to piece together disparate pieces of information nearly faster than the reader can. She has a powerful coffee addiction that reminds me more than a little of myself. She is incredibly brave yet deeply afraid of becoming a slave again, to the point where her fear can cloud her understanding of who is her friend and who is her enemy. She can be rigid and obsessive in her pursuit of justice, and has difficulty comprehending the more obtuse social and metaphorical aspects of life and society, such as religion.

One of my favorite passages occurs just after the Red City police officer Hoshi works closely with, Sorreno, forces Hoshi to take a weapon even though Hoshi despises being armed. The passage conveys in a way that I cannot what it is like to be a person with I/DD traumatized by a past in which people have forced specific choices upon you:
"I sulked in front of my window, watching the tiny people on the streets twelve stories down, weaving through their hours. If I squinted, the colors of their clothing melted them into long rivers of pattern. 
"None of them were forced to carry a shocker. Or to report in to the IO. Or to be under constant threat of being displaced from everything they loved and thrown into a supervised livestock pen in a job they hate but will be imprisoned or even killed for not doing with no hope of anything better if—forbid!—they end up accidentally missing a meal two weeks in a row. 
"I hit my fist hard against the hard glass. 
"The pain giving me something namable, tangible, blamable to justify my anger. 
"The bitterness of my life up until two years ago broke over the surface of my consciousness and I scratched at the synthskin covering the unhealed scars." -Hoshi and the Red City Circuit, Ch. 12
That Operators themselves do not uniformly agree on Integration Law one way or the other is a testament to the sheer variety of neurodivergent people Raymaker describes. The hero, the hero’s extremely slimy sometimes-ally, sometimes-enemy drug lord acquaintance Luzzie Vai (who happens to be one of my favorite characters in the book), the hero’s anti-Integration yet emotionally beautiful murdered lover, the nearly incomprehensible and mysterious priest Gno, and the cowardly and irritating Martin Ho are all neurodivergent. Each of these characters is given three-dimensional characterization. The book’s characterization is one of the strongest elements of its writing. I wanted to spend as much time as possible with almost everyone in it.

Equal to the book’s characters is the book’s central unsolved murder. I won’t spoil a single thing about it, and that’s because it’s something the reader should enjoy for themselves! Hoshi must race against time to determine who killed the three Operators, how, and why before the serial killer claims their next victim. I found myself obsessively devouring chapters to try and follow Hoshi to the next clue, eager to learn more about how the book’s impossible crime was committed. Hoshi must travel all throughout Red City to solve the murder, from the centrally located Cleopatra Square to the Integration Office to the grim, vaguely brutalist Operator housing where her lover Claudia once lived. The mystery has the heft and complications of the best detective novels, and ultimately places the protagonist’s inner conflict at its center, as its beating heart.

The Negatives


While I did love the book, I do have a few sustained criticisms. The first is that the book is slow to explain itself. While a reader of fantasy or science fiction would be quite used to the full-immersion manner in which Raymaker introduces us to the slang and terminology of their world, a reader of detective novels may be quite confused for the first thirty or forty pages. The book can take longer than it should to make the meanings of these words clear to an uninitiated reader.

Additionally, the book can be a bit clumsy in its treatment of some issues. For instance, a real-world religion (or an interpretation of the form that religion would take in the future) plays a prominent role in the book. While I do not know enough myself to say whether Raymaker consulted spiritual leaders or adherents for the purposes of writing Hoshi (they do mention specific real world gods by name and the god’s known sphere), I feel the book could do more to make the depiction of the religion less vague and superficial.

Finally, I feel that the true main villain of the book, and the villain’s motivations, are too simple in comparison to the detailed and clear personalities of the other characters. Without giving too much away, real people similar to the villain are themselves extraordinarily complex in their desires and reasons for doing what they do. The oversimplification present in Hoshi’s depiction of one such person doesn’t quite serve the book’s story as well as it should. While there’s an argument to be made that dehumanizing the villain works well with the story’s themes, I feel that there is a difference between making someone irredeemable and making them two-dimensional. However, I recognize this is very much a your-mileage-may-vary issue.

Conclusion


Hoshi and the Red City Circuit is an excellent debut by a neurodivergent author about neurodivergent protagonists, set in an immediately engrossing future world. It has a lot to say about people, politics, and the complications of neurodiversity. It also acts as a great detective thriller that makes you want to keep reading. It has its problems and limitations, but the opinions of readers will vary. While the book very much has an autistic or I/DD audience in mind, I wholeheartedly recommend it to neurodivergent and neurotypical readers alike.