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.

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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

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Book Review: The State of Grace, by Rachael Lucas

Elizabeth Bartmess
elizabethbartmess.com

Book Cover via GoodReads.com
[image: Cover of the book The State of Grace:
A medium-green background covered with rows
of lighter green happy face emojis tilted sideways,
except one pink sad face emoji on the lower right.
Large white text in an all-caps informal font reads:
"The State of Grace"
Smaller text in white script reads, "Rachael Lucas"
Smaller white all-caps informal text in the upper right
reads, "Sometimes fitting in means standing out."]

The State of Grace is a young adult novel narrated by Grace, a fifteen-year-old high school student who deals with common teenage issues like dating, friendships, family conflict, and birthday parties, while also being autistic in a world not designed for autistic people.

Grace is a well-rounded and sympathetic character. She has various interests (horses, wildlife, Doctor Who, My Little Ponies), rides and cares for a horse, has friendships and complex relationships with her family members, and has a good—and sometimes entertainingly snarky—sense of humor. She's introspective and insightful about how being autistic affects her needs, such as extra recovery time after social interaction and the ability to leave stressful situations. She also has a good sense of how others' willingness (or refusal) to accommodate those needs affects her ability to deal with everyday life. She also has other issues common to autistic people, including sensory overwhelm, sleep schedule dysregulation, difficulty interpreting others' imprecise or implicit communication, and difficulty providing other people with the responses and body language they expect.

The book shows clearly how even though Grace is often able to pass as neurotypical, it takes extensive effort:

"[m]y head is full of all the things I have to remember when I'm being a person every day: don't be rude, don't stare, don't look blankly into space when you're not thinking anything, shut down the noises of everything talking, concentrate, hold it together, don't have a meltdown…" (101-102)

Grace's descriptions are given in ways that autistic readers will connect with, and with enough detail (as far as I can tell) for neurotypical readers to understand what it can be like to be autistic while having to deal with the demands of ordinary life—a careful and impressive balance.

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Throughout, the focus is kept on Grace's experience of the world, rather than others' experience of Grace—as it should be. This is particularly evident in her commentary on how other people treat her, which includes her frustration with not being consulted on important decisions, and not being believed or asked about her experiences:

"My parents seem to think life will be easier if my autism is on a need-to-know basis. I'm not sure it works, but nobody bothered to ask me." (32) 

"[T]he Quiet Room is a) next to the canteen so it smells of hot metal and thin, pointy headaches and b) is opposite the Gym Hall so the thud thud thud of basketballs makes me want to scream. But I suppose they tried. It's a shame they didn't actually consult anyone who'd want to use it, and that's why it ends up being a glorified store cupboard with a wall stacked with props from the end of-term performance and a stack of leftover copies of Of Mice and Men beside the ergonomic beanbag (hissing noise, weird smell) and a token lava lamp and some inspirational posters. And a dying plant." (5) 

"[People] tell me what they think I feel because they've read it in books, or they say incredible things like 'autistic people have no sense or humor or imagination or empathy' when I'm standing right there beside them (and one day I'm going to point out that that is more than a little bit rude, not to mention Not Even True) or they—even worse—talk to me like I'm about five, and can't understand." (134-135)

The focus on Grace’s experience also carries through in what’s made obvious to the reader and what isn’t. For example, there's something going on with the mother's new friend being a bad influence, and it wasn't clear what was going on until Grace learned more later. This is a refreshing change from portrayals where an autistic character's social difficulties are shown by their failing to understand something made so clear to the reader that the character seems to be ignoring obvious truths.

Instead, The State of Grace shows something more accurate: Grace has difficulty detecting and processing cues relevant to accurately understanding (some) social situations. Because the novel stays in her experience, the reader isn’t being provided with the neatly prepackaged information that a neurotypical person might perceive; they’re seeing the same genuinely ambiguous information that Grace is. That means Grace comes across as someone who’s doing her best despite not having all the information she needs, instead of being portrayed as having all the information she needs but inexplicably failing to draw the obvious conclusions. This will ring true for many autistic people, and give many non-autistic people an accurate window into a common (and frustrating) autistic experience.

This is a very effective window on a particular aspect of autistic experience.

Another realistic ongoing theme is Grace's difficulty negotiating for what she needs:

"I need to be quiet, somewhere, and just let myself settle, like a snow globe. But it's hard to make people understand that." (76) 

"Sometimes I end up staying places for hours longer than I want to because I don't know how to make my excuses and leave." (167)

Grace thinks of herself judgmentally sometimes, for example criticizing her tendency to monologue about special interests: "…even I can tell when I'm doing the fascinating facts by Grace thing sometimes" (116). She also references enacting neurotypical-defined rules as "being a person" (14) and says she "speak[s] human as a second language" (8). Although I would not want readers to walk away from the book equating being autistic with not being fully a person or human, this mirrors ways I've thought about my own experiences, and seeing it on the page made me feel connected with the character. (Other people's mileage may vary.)

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In some areas the book edges into a "burden" trope, particularly with respect to Grace’s thirteen-year-old sister Leah. Both Grace's grandmother and Grace think her mother has overburdened Leah, because Leah is "sensible" (147); Grace's mother justifies this by saying Leah is "the capable one" (149) compared to Grace. Her mother has made Leah responsible for looking after Grace at times in the past. Grace's mother is also shown as having to choose between getting a job (which she wants to do) and staying at home to take care of children, although it's not clear that she actually needs to. It's also stated that "the voluntary stuff she does with the local autism support group takes over her entire life" (23).

These read to me as suboptimal parenting decisions by Grace’s mother, rather than something inherent to Grace being autistic, but someone who came to the book exposed to the stereotype of autistic people as burdens might interpret it as consistent with the stereotype. It helps that Grace's narrative make it clear that being autistic affects her far more than it affects others. This reflects autistic people’s real-life experiences: it is harder to be us than to be our family members.

There are also several incidents where Grace creates or contributes to situations where others are harmed, or narrowly escape harm. In one case, she shoves her sister into a wall after an unrelated argument with other people, because her sister’s "in the way and she's always so perfect and I hate myself" (97). In another, she makes an unwise decision while trying to impress a friend group, and isn't able to stop herself in midstream despite knowing it’s a bad idea (a type of executive-function failure that I can relate to). The third incident seemed like a bad decision that a non-autistic teenager could have easily made, and unrelated to her being autistic.

Her sister, mother, and friends readily forgive her, and no one talks with her about what she could do differently to prevent the same things from happening again. She feels terrible about each incident, but it felt like she was being let off unusually easily, or that they didn't think she’d be able to do better, and I wished they’d been portrayed as having more respect for her ability to change.

In real life, autistic people sometimes need more tolerance for mistakes because we have difficulty regulating our behavior in certain situations, or because we don’t always read situations well. And there are things it isn’t realistic to expect us to do—for example, we can’t stop a meltdown in midstream. It’s important to not try to make us change things about ourselves we can’t change, and it’s also important to recognize that we can (and should, and generally want to) figure out why we made avoidable mistakes, so we can avoid making them again.

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Apart from the above issues, Grace's relationships with others were portrayed well. Her mother felt like a realistic mixed character, someone who messes up but also works to do better. She doesn't always understand Grace's perspective, but plays a supportive role; Grace says her mother "might make me want to scream sometimes, but she is good at recognizing when I've hit the wall and keeping me from losing it" (37).

Her relationship with her best friend also felt realistic. The friend, Anna, is described as the kind of person who is friends with everyone. She also helps Grace with some social stuff, e.g., interpreting ambiguous text messages. Although not universal, this is a common real-life friendship pattern I've seen described in non-fiction. Grace also mentions some reasons why Anna is friends with her: she makes Anna laugh and they have shared interests in fandom. This lets us see their friendship is not one-sided.

Grace connects with her love interest, Gabe, partly through shared fandom. Since shared interests are a common way for autistic people to develop meaningful relationships in real life, I appreciated it being portrayed here. Similarly, it’s common for us to become friends with other neurodivergent people, and Gabe has ADHD. There’s a charming scene where Gabe shares some of his ADHD-related experiences with Grace, and Grace tells him she’s autistic; he then asks her what it’s like, and listens when she tells him.

One thing that stood out to me was Grace’s lack of connection with other autistic people, especially since her mother volunteers with an autism support group. She also doesn't seem to access any online resources or read any materials by or for autistic people. Although the book's time period isn't given, because it doesn't reference social media and Grace and her friends only use their phones for talking and texting, it comes across as set before the proliferation of communities and materials by and for autistic people in the last 5-10 years. This isn’t a problem with the book per se—but I wouldn’t want anyone new to reading about autism to walk away from the book thinking that Grace’s relative isolation from other autistic people is a reasonable default state.

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Overall, though I had some concerns, they were outweighed by the realistic, sympathetic, detailed portrayal of Grace's experiences; the book clearly shows how and why our experiences can differ from neurotypical people even when we’re ostensibly in the same situations. Speaking personally, I felt the book offered a glimpse into what my life could have been like if I'd been diagnosed when younger (but not subjected to ABA, or at least pulled out of it quickly) and had a supportive neurotypical friend. Grace's awareness of herself as autistic helps her calibrate her understanding of her own needs realistically, and understand why the world is particularly difficult for her—something that would have been incredibly helpful to me at the same age.

Autistic people vary a great deal, and we'll vary in how much overlap we have with Grace. That said, I would recommend this book both for autistic people looking for something to connect with, and for non-autistic people looking to understand autistic experiences better, with a caveat: Point them toward additional resources by autistic people. Learning from and connecting with autistic people is important and very helpful for other autistic people, as well as for their family members, whether autistic or neurotypical themselves. I would recommend Kit Mead's list of autism resources as a good starting point.

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Two content notes for the book: some alcohol abuse by family members; two brief references to past ABA-like therapy; potential harm to an animal.

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Why Do So Many Autistic People Flap Our Hands?

Maxfield Sparrow
unstrangemind.com

[image: rainbow colored hands in silhouette,
upraised and reaching out with joy.]

The saying goes, “if you’ve met one Autistic person, you’ve met one Autistic person.” That was really hammered home for me today as I watched a short video in which an Autistic man explains why Autistic people flap our hands … and pretty much nothing he said matched up with my own experience. A few of the things he said even bothered me.

My intention is not to erase what he said, however. His view of why he used to flap his hands is just as valid as my view of why I still flap my hands. There are many ways of being Autistic.

(Since the video was not captioned, I took the time to make a transcript of it for those who can’t hear or understand it. That was fortunate as the original video was removed from YouTube.) The video explains,

“It comes down to repetition. When we, as people with Asperger’s, are in a really unknown situation or we’re in a situation where there’s a lot of anxiety […], there’s a lot of stress, the way that we manage that, is because generally it’s overwhelming we do repetitive motions, because then we at least know, hey, if I do this I have complete control over it. And I know that whatever I do, I have complete control and it’s going to happen the same time every time. Therefore, I get a little bit of comfort from it.”

This does not even begin to describe why I flap my hands or make other “Autistic movements.” Yes, I flap in stress. I flap in overwhelm. I flap when I get hurt. The video presents hand flapping as if it only occurs as a result of stress or anxiety, however, and that is not at all true for me.

I flap my hands when I am happy. I flap them when I am content. I flap them a lot when I get excited about something. I have as many different ways of flapping and twisting and ruffling and fluttering my hands as I have emotions and emotional combinations that wash over and through me. My hands are like barometers of my emotional climate.

There are plenty of things I do to try to increase the amount of control in my life, but flapping my hands is not really one of those things. I don’t flap my hands to have something reliable and constant in my life. I fill that need with other things, like small stuffed animals I carry in my pocket or ritual ways of doing certain things. For example, there is a little ritual to how my boyfriend and I say good night in the evening and that ritual comforts me, gives me a sense of stability and predictability in my life, and helps me to make the transition from visiting with him to being alone again. I do other things like always removing the ice cube trays from the freezer in the same order, always putting the same number of ice cubes in my glass, always walking or bicycling the same route to get places, always brushing my teeth for the same number of minutes every night, and so on.

These things serve my need to have a predictable, orderly world that is under my control as much as possible. The more I am able to feel a sense of control over my life, the calmer and happier I am. I suspect this is true for most or all people, but it is quite extreme in my case. Something small, like not getting my usual seat, or having the water turned off for twenty minutes in my apartment building in the middle of the day with no warning, can make me feel like my world is coming to an end.  I am always fighting back the forces of chaos. But I do not wage this war with hand flaps.

The most common reason for me to flap my hands is that I am very happy and excited about something. My boyfriend told me that he loves to see my hands flap because there is a lovely joy that goes along with it that is fresh and appealing, without guile or artifice. If I recall correctly, he used the word “childlike” and meant it in a beautifully loving and respectful sense. Over the month of December, we went through a Jacquie Lawson advent calendar together every morning right after having breakfast together and he got to see lots of hand-flapping on the days when the calendar surprise was a steam locomotive or a peacock spreading his bright tail feathers, or a mansion kitchen staffed entirely by giant teddy bears.

I’d see these things that made me really happy and excited and there would go the hands. By the time I was aware that I was flapping my hands, they’d already been going wild all on their own without my awareness. My hand flapping is so often an expression of sheer, unadulterated joy—pretty much the exact opposite of what is being taught in the video, when Asperger Experts says, “it’s basically a giant signal saying, “hey! I’m not comfortable right now. Things are too much pressure or too much, just, overwhelm of sensation to the point that I need to do something to feel better about it.”

Yes, I can feel pretty overwhelmed by joy! But the kind of flapping I do when I’m not comfortable and suffering is another kind of hand flap. It’s a whole language of flaps and twists and shifts and strokes and claps. My hands speak my emotions so clearly, but only to those who are willing to learn what they are saying. My hand flapping is not a single message of suffering. It is a multi-faceted expression of my complex and beautiful emotional life.

As an alexithymic, I’m not usually aware of my emotions. So I even watch my own hands flapping away to help me understand what emotions I’m experiencing. I am “blind” to my emotions—I have emotions, usually very strong ones, but I am unable to know what I am feeling so I have to play detective and watch my body for clues.

My hands are always telling me what I am feeling. Without my hand flaps, I would not be anywhere near as connected to my inner life. Without my hand flaps, I would struggle so much more every day, just trying to understand what my body and spirit were experiencing. My hands are my teachers and they educate me about my deepest self every day.

While I feel as if my three-dimensional experience of hand flapping is described in a very one-dimensional way in the video, that’s not what really bothered me about the message. I was bothered by the way hand flapping was presented as something bad, undesirable, ridiculous looking, and mainly restricted only to small children. The video admitted that hand flapping is necessary, but presented it as something annoying and embarrassing that should be substituted as quickly as possible with something less visible, like repetitive thoughts:

“You shouldn’t just try to stop it because then they’re just going to find some other way of gaining comfort. […] All of a sudden, they might gain a tic, like [clicks tongue several times] and then that’s just even more annoying.”

No.

You shouldn’t try to stop hand flapping because it is part of who we are. Would you like it if everyone were trying to make you stop smiling? Or tucking your hair behind your ear? Or putting your sunglasses on top of your head? Or crossing your legs when you sat? That is what people are doing to us when they try to make us stop flapping our hands: they are trying to force us to stop moving in ways that are natural, healthy, and comfortable to us.

(And when I say “we” and “us,” I mean those of us who do flap our hands or otherwise naturally move in different ways from the rest of society. Not all Autists move in the same ways and that includes the fact that not all of us rock or flap or spin (although the vast majority of us do) so don’t assume someone is not Autistic because you don’t see them moving in different ways. Or they speak. Or hold a job. As I always say, there is no one way of being Autistic.)

The Asperger's Experts video presents hand flapping as a necessary evil—something that is annoying but has to be tolerated because we do it to soothe anxiety, and might end up doing something even more annoying if we’re forced to stop. In my opinion, hand flapping is a fundamental manifestation of the native nervous system of those who flap. It is how we are built, it is what we do. The focus should not be on whether it “might look ridiculous” or whether it’s better to “[transition] into listening to the same song over and over again, [or]  say the same thing in [one’s] mind over and over again.” the focus should be on building a society that understands that we don’t all move our bodies the same way and that’s okay.

“You know, you don’t see many people that are forty doing this [waves hands].” I am fifty and I flap my hands. Many of my friends who flap their hands are older than me. I know people in their twenties, thirties, forties, and fifties who flap their hands and even someone in his seventies who flaps his hands. It’s okay to move differently from others. It’s okay to have a different neurology and it’s okay to be who you are.

There is a much worse risk that comes from trying to suppress hand flapping than developing an “annoying tic.”

When I was a child, I felt like there was no place that was safe, no place where it was okay to be who I am, no place where I could just relax and be myself. Everybody was trying to give me the advice of “just relax and be yourself,” but when I would actually do that, I would be yelled at, criticized, punished, bullied. I lived in fear and anger because nothing I did, no matter what, was ever right or good enough. At school, I was bullied by the students and even by many of the teachers.

At home, I was blamed for the bullying and told I was bringing it on myself. In a misguided attempt to shape me into someone who would not deserve to be bullied so much, all my mannerisms and stims and quirks were under attack. I felt like I was constantly picked apart for behaviors like walking on tiptoe, clearing my throat, flicking my fingers, spinning around, talking too loudly, grunting instead of talking, and so on. I spent … wasted … so much energy and focus on trying to make my body and face and voice do all the proper things. But no matter how hard I tried, I kept always doing something wrong, and getting called out for it.

As a result, I was filled with so much anger toward everyone around me and so much self-loathing. I felt like nothing I did was ever right and I had no place to relax – school was filled with bullies and home was filled with picking apart my stims. I grew to hate everyone and often would lose myself in bitter daydreams with imagery I don’t care to re-visit now. My whole life was torment and I was in agony. This is the reason to let Autistic people be, not the fear that they might develop new behaviors that are even more annoying to the people around them.

The Asperger's Expert video’s reason for tolerating hand flapping was all about what makes other people feel okay or uncomfortable and had almost nothing to do with what the Autistic person wants and needs. Hand flapping almost had to be defined in that very one-dimensional manner, because if hand flapping is nothing but a comfort for excruciating anxiety, it is easier to decide to tolerate the “annoying” and “ridiculous” behavior, but if hand flapping is something that can be a sign of happiness as well as of more difficult emotions it’s harder to justify allowing people to be “annoying” just because they are happy.

But the problem is not with the hand flapping. The problem comes when the decision has been made that hand flapping is annoying or weird and not natural and adorable (which happens to be how it appears to me. I love to see people hand flapping! It makes me happy to see someone making a happy hand flap.)

The makers of the video may be Asperger’s Experts, but they are most surely not Maxfield Experts, because I’m not at all like what was portrayed in that video and I have many Autistic friends who are similar to me. Of course some Autistic people must resemble the portrait that was painted by the educational video purporting to explain hand flapping because that is how those two young men experienced their own Autistic movements. I don’t want to erase their voice when raising mine. But I also want to make sure their message is not the only one available to people.

So, as I said, the lesson here is that if you’ve met one Autistic person, you’ve met one Autistic person. There is not just one way to be Autistic. I’m sure the makers of the hand flapping video were expressing the truth about what being Autistic is like for them. Just be careful to remember that no one (including me!) speaks for all Autists. It is a pretty safe bet that there are also Autists out there who aren’t like the description in the video but aren’t like me, either.

So when you see someone flapping their hands, don’t make assumptions about what it means. There are some meanings that are more likely and some that are less likely, but better than guessing—better even than statistically-backed guessing—is getting to know the individual Autist and learning what hand flapping means for them.  Engaging with humans is almost never a one-size-fits-all scenario. We Autists are individuals; it’s good to learn general autism data, but “at the end of the day” there is no substitute for learning the language, including the body language, of the special person in your life. Or of yourself, if that’s how it’s all playing out for you.

But no matter what the flaps mean where you are, I do hope you will take one thing seriously that I said: don’t hate on the flaps, don’t be afraid of them, don’t judge them so harshly. Learn to live with the hand flaps because they are a good and useful thing for Autists, no matter what purpose they serve for each individual Autistic person. And, who knows: if you don’t already, there may come a day when you begin to see the beauty in hand flaps. Hand flapping and other Autistic stims are quite exuberant and lovely if you remember that they are a person’s heart and spirit made visible in time and space for all to behold.

(Note: A version of this post was published at unstrangemind.com in 2014.)

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