My criticisms of Atypical’s freshman season were certainly no secret, as I shared my feelings both publicly in various news outlets and privately with Robia Rashid, the show’s creator.  At the time, I mentioned that a lot of issues could be fixed, but my biggest problem with season one was the lack of autistic involvement.  To remedy this problem, I suggested that, at the very least, an autistic consultant needed to be hired for season two.  Fortunately my suggestion was taken to heart, and with the addition of autistic consultant David Finch many of the show’s major problems have been addressed.  From the moment I began watching season two, I felt freed from the brackish misrepresentations that distracted me in viewing the first season and I was consequently able to enjoy the show. I even laughed out loud during a few of its funniest moments.

I am very surprised that the show improved as much as it did and while I intend this review of season two to be very positive, I think I will need to go through some of the problems I had with season one in order to fully convey how big of a leap forward the creators took in the show’s sophomore year.

Alex Plank with cast members Keir Gilchrist & Michelle Farrah Huang

Another incident in the first season that I felt was not positive was the depiction of Sam breaking into his therapist’s house to leave her a box of chocolates. In season two, Sam continues talking with his therapist, who surprisingly takes his calls despite his behavior in season one.  I think that she seems accepting of this communication out of guilt over the way she handled things in the first season.

In general, Sam’s relationships in season two are much more realistic and, more importantly, are extremely positive from a standpoint of portraying autism in an accurate and constructive manner. For instance, instead of furthering the myth that those on the spectrum cannot have a romantic relationship, season two goes a step further and features multiple women vying for Sam’s affection. If anything, Sam treats these women with more respect and maturity than they show towards him which is one very enlightening commentary on how being autistic can actually make one more compassionate, not less. 

Season two further explores the one thing I liked most about Atypical in season one, its portrayal of family dynamics. I believe that the viewers who loved season one focused on that part of the show and either forgave the autistic representation issues or did not notice them. I think that’s why a lot of parents were excited about the show while autistic people, even those with a roseate view of the series, could readily point out specific issues that they felt should be fixed in the second season. 

I appreciate that season one resonated with many families who watched and were ecstatic to finally see a family like theirs being represented on television. Thankfully, season two improves even more on that front, as the way that Sam interacts with other characters indicates a positive shift towards his being treated more as a real person and less as simply a diagnosis.   Moreover, the way he is talked about is also more positive. 

Alex with actor Brigette Lundy-Paine (Casey)

Many reviews of Atypical have focused on the plot lines centered on autism. To me, these elements of the show seem like PSAs, and while I appreciate that Robia and her writers felt the need to include these important topics in an effort to teach the audience about things we face in the autism community,  I think the scenes that are designed to deliver exposition information about autism actually end telling us the least about autism. For instance, while I appreciate the intentions behind bringing up the issues of police being untrained when it comes to dealing with autistic people, that storyline seemed a bit forced. In contrast, I felt much more was conveyed about autism with much more depth in the storyline of Casey’s birthday involving a tradition of rituals that Sam adheres to as his way of expressing his love for her. This year, Casey brushes Sam off and expresses frustration due to a belief that Sam is obsessing over these birthday rituals from a place of selfishness when she clearly is trying to deal with other issues. However, the resolution of this conflict, and Casey’s realization regarding Sam’s true intentions, stands out as the most beautiful moment of season two. 

Alex with Atypical Creator Robia Rashid

In conclusion, the second season of Atypical far exceeded my expectations, and, if it continues going in such a positive direction, by the third season I think it could more than make up for the problematic representations from season one. Robia’s receptiveness to suggestions makes me excited to see how she further includes autistics in season three. 

In that vein I’ll end this piece with my biggest suggestions for season three. First, I think an openly autistic writer should be added to the writer’s room. David Finch, the show’s consultant, who I believe was instrumental in fomenting the major improvements of this season and penned a hilarious  New York Times best-selling memoir, would be a perfect candidate.  I personally served as a consultant on FX’s The Bridge, so I know how difficult a job it is to ensure that autism is fairly and accurately represented while concurrently serving the overall story and tone of a show. David did a remarkable job and I think those on the spectrum who’ve been critical of season two fail to acknowledge how difficult a job it was to improve the representation of a character who had already been developed for an entire season. Atypical accomplishes this with a character arc that fixed the issues gradually while not changing him drastically enough to betray the underlying character viewers had come to expect. 

Finally, I want to see even more autistic characters in season three and I want to see another autistic character with a bigger role. Autism is often thought of only in reference to kids or teens. If Atypical wrote in an adult autistic character, perhaps one Sam could see as a role model, I think that would be a powerful addition to a show that I’m actually really starting to dig. And if you’re looking for an autistic actor to play him, contact my agent. I think I have some availability.

The post Atypical’s 2nd Season is a Step Forward in Autism Representation appeared first on Wrong Planet.

Jim Sinclair became one of the first openly autistic adults online, joining a digital mailing list run out of St. John’s University in New York frequented primarily by parents and professionals. Its founder, Ray Kopp, was the father of a legally blind girl named Shawna who had sought unsuccessfully for years to get a more specific diagnosis for her than “developmentally delayed.” Kopp launched the list in 1992 with a dyslexia expert at St. John’s named Robert Zenhausern. On the threshold of the addition of Asperger’s syndrome to the DSM, one of the most frequently asked questions on the list was whether Kanner’s syndrome could persist into adulthood.

With Donna Williams and Kathy Lissner, Sinclair also launched the first autistic-run organization in history, calling it Autism Network International. Early on, its founders decided that ANI would stand up for the civil rights and self-determination of people all across the spectrum, not just those considered high-functioning like the members of the MAAP list. All of ANI’s original founders had been branded low-functioning as children and had gone on to earn university degrees. They understood that functioning levels change not only in the course of the life span but also day to day. Even a chatty “more able” adult could temporarily lose speech, and the term low-functioning often obscured talents and skills that could be brought out by providing a more suitable environment or an alternate means of communication.

Like any nascent subculture, this emerging community gave birth to its own in-group slang. The most enduring ANI neologism was the term neurotypical, used as a label for nonautistic people for the first time in the group’s newsletter. With its distinctly clinical air, the term (sometimes shortened to NT) turned the diagnostic gaze back on the psychiatric establishment and registered the fact that people on the spectrum were fully capable of irony and sarcasm at a time when it was widely assumed that they didn’t “get” humor.

Carrying the meme to its logical extreme, an autistic woman named Laura Tisoncik launched an official-looking website in 1998 credited to the Institute for the Study of the Neurologically Typical. “Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity,” the site’s FAQ declared. “There is no known cure.”

Taking a cue from the radical Deaf community, ANI members began to refer to themselves as “Autistic” instead of saying that they were people with autism. “Saying ‘person with autism’ suggests that autism is some- thing bad—so bad that it isn’t even consistent with being a person,” Sinclair observed. “We talk about left-handed people, not ‘people with left-handed- ness,’ and about athletic or musical people, not about ‘people with athleticism’ or ‘people with musicality’ . . . It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”

The emergence of e-mail, electronic bulletin boards, Usenet news- groups, Internet Relay Chat, America Online, and ultimately the World Wide Web provided a natural home for the growing community of newly diagnosed teenagers and adults, where they could interact at their own pace in a language that often felt more native to them than the spoken word. Carolyn Baird, a mother of four who took over management of the St. John’s list, spoke for many of her peers when she told a Dutch journalist:

Autistic people seem to have an affinity with computers and many of them were already working in computer-related fields prior to the advent of the Internet. The appeal of a computer is that there is only one right way to tell it to do something—it doesn’t misinterpret what you tell it and do something else as people do.

For many of us, this medium has given us the opportunity to be accepted for the first time in our lives as being just like everyone else, and gives us our first hint at what it feels like to be accepted on the quality of our thoughts rather than the quality of our speech.

The ANI posse began making regular appearances at conferences, where they set up booths and handed out newsletters and buttons emblazoned with slogans like “I’m not just WEIRD, I’m AUTISTIC” and “I survived behavior modification.” Their information tables became little oases of autistic space where people could take a break from the probing stares, the swirl of perfumes, the press of flesh, the unpredictable outbreaks of applause, and the constant reminders that their existence was a tragic puzzle. While the NT attendees lined up for lavish banquets and celebrity-studded comedy showcases, the Autistics would pair off to chat and stim in quiet hallways and coatrooms, camping out on the floors of each other’s hotel rooms at night, or sleeping in their cars like impoverished science fiction fans crashing worldcons in the 1940s.

At a conference in St. Louis, one parent-ally of the group managed to get access to the whole vacant upper floor of an office building under renovation near the convention center. Amid dusty heaps of plaster and drywall, the Autistics unfurled their mats and sleeping bags, brought in a couple of floor lamps, and set up empty refrigerator cartons for anyone who needed to retreat to an enclosed space for a while. After fielding questions from parents and psychologists all day, it was a relief to return to a place with the fellow members of their tribe that felt like an enchanted cave after dark. When someone pointed out the window at an old radio tower and said that it was for sale, Sinclair replied that, since the aliens were all gathered in one place now, they could transmit the request to the mothership to come take them home at last.

Reprinted from NeuroTribes by financial arrangement with Avery Books, a member of Penguin Group (USA) LLC, A Penguin Random House Company. Copyright © 2015, Steve Silberman

The post The Dawn of Autistic Space – Excerpt from NeuroTribes appeared first on Wrong Planet.

I’m autistic and work as a consultant for autistic characters in Hollywood. I’m best known for my work on FX’s The Bridge, in which the main character was a female autistic detective, played by Diane Kruger. The Peabody-award-winning show was widely praised for its accurate and nuanced portrayal of an autistic character, a departure from the unfortunately common autistic hollywood stereotype. I worked closely with the writers, producers, directors, and Ms. Kruger to develop the character. Additionally, I was on set, ensuring that her portrayal was always authentic. The Bridge’s commitment to diversity could also be seen in its writer’s room, which included writers who were female, gay, and Hispanic. The room even included writers whose identity had an intersectionality of those three Hollywood minority groups.

But the character was not played by an autistic actor. FX wanted a celebrity to star in the show and unfortunately, there were no autistic actors with enough star-power to play the part. To the credit of The Bridge’s commitment to diversity, I was actually cast in one minor recurring role, a newspaper employee, which ironically was written as a neurotypical character. But I don’t know of any other openly disabled actors who worked on the show.

Ben Affleck is the next major star to take on autism. He will be playing an autistic accountant in the upcoming film, The Accountant.

But even autistic roles for which star-power isn’t important are usually given to neurotypical actors. For example, NBC’s Parenthood cast Max Burkholder, an unknown neurotypical actor at the time, to play a major autistic role in the series. The show didn’t even hire an autistic consultant and Burkholder regrettably commented that he didn’t think one was necessary. Fox’s show Touch also cast a non-autistic actor to play an autistic child. Unlike Parenthood, however, Touch did hire an autism consultant, but she was not autistic and only worked on the pilot. Even Sesame Street’s new autistic Muppet, Julia, is played by a neurotypical in a suit.

And in the recent independent film, Jane Wants a Boyfriend, Louisa Krause played an autistic woman opposite Eliza Dushku. The filmmakers certainly could have cast an autistic actor instead of Krause because she is relatively unknown and Eliza Dushku is enough of a star to secure financing and attract an audience. The same was true with the independent film, The Story of Luke, in which neurotypical actor Lou Taylor Pucci played an autistic character opposite Seth Green. And there are many more examples of minor autistic characters being played by neurotypical actors, where star-power has absolutely no influence on casting.

The only example I could find of an autistic actor playing an autistic character was in this season of BBC’s Holby City, where Jules Robertson was cast as a recurring character in eight episodes. I was excited to see the show but upon watching it, I became a bit disappointed by the writing, which was stereotypical. In the first moments the character is introduced, he takes a few things literally, unknowingly makes an offensive comment about an older woman’s age, and states “If I’m direct, it’s because I have Asperger’s Syndrome.” While Holby City should be commended for casting an autistic actor, the writers room didn’t write a nuanced character. Despite this, Robertson did a great job playing the role and he seemed authentic even when the writing was over the top (which was most of the time). I can’t imagine a neurotypical actor handling that character as well as Robertson did, which underlines the importance of authentic casting but also highlights the importance of autistic input behind the camera.

Diversity has become a hot-button issue in Hollywood, where discussions focus on race, gender, sexual orientation, and even gender identity. Disability and autism, however, are left out of the discussion. At this month’s Television Critics Association presentations, CBS was criticized for its schedule of shows in which there are no non-white leads. But no one ever thought to criticize CBS (or every other network, for that matter) for having no disabled leads, despite the fact that individuals with disabilities are the largest minority group in America.  If Hollywood wants to represent true diversity, it needs to make a much better effort to be inclusive of autistics and people with disabilities.

The post Hollywood’s Exclusion of Autistic Actors Highlights its Biggest Diversity Problem: Disability appeared first on Wrong Planet.

When I was diagnosed with Asperger’s syndrome at the age of nine, autism was still mistakenly considered a rare condition. As a teenager, in 2004, I created WrongPlanet.net which was the first major online community for people on the spectrum to connect with one another. Since that time, awareness of autism has skyrocketed. That’s good, but acceptance and inclusion are even more important.

Last month’s Democratic National Convention placed a high value on inclusion for those with disabilities. Anastasia Somoza, a graduate of the London School of Economics with cerebral palsy and spastic quadriplegia, gave a powerful speech that was echoed by both President Obama and Secretary Clinton. Ryan Moore, an instructional technology leader with dwarfism, spoke about the necessity of affordable health care. And Hillary Clinton emphasized the importance of inclusion in her own speech, mentioning disability on five separate occasions.

The Republican National Convention, by contrast, seemed to focus mainly on exclusion. The word disability wasn’t even mentioned once. Eric Trump said that his father was running for “families with special needs children,” as if adults with special needs don’t exist.

The differences between the two parties’ approaches to disability also informs their platforms. The Democratic Party platform includes 35 mentions of disability rights in 19 sections. The Republican platform, on the other hand, specifically states that it does not support ratification of the UN Convention on the Rights of Persons with Disabilities (which is supported by the Democrats).

Even more importantly to me, the Democratic platform specifically addresses the needs of people with autism, stating that Democrats “believe that our country must make supporting the millions of individuals with autism and those diagnosed in the future and their families a priority.” The text goes on to explain how this will be accomplished by expanding services — including housing and employment — to include adults, as well as those transitioning to adulthood.  Additionally, the platform states that the party will “push states to require health insurance coverage for autism services” and stresses the importance of early screening for autism in children.

In stark contrast, the Republican platform does not mention the need to support individuals with autism at all. In fact, the word autism is mentioned only once, in a paragraph about biomedical research that also describes “new dangers like Ebola, Zika, Chikungunya, and antibiotic-resistant pathogens.” The juxtaposition of autism and terrifying diseases like Ebola and Zika is incredibly damaging to people on the spectrum, many of whom see autism as a core part of our identities. It’s also incredibly dehumanizing.

The candidates themselves have also offered starkly differing views of disability. Donald Trump has been widely criticized for mocking New York Times reporter Serge Kovaleski, who has a condition that affects the movement of his right arm. At a rally in South Carolina in November, Trump flapped his right arm around uncontrollably while making fun of Kovaleski’s speech. Instead of apologizing, Trump has denied that he knew Kovaleski was disabled and claimed that he was merely making fun of flustered reporters in general. He has also erroneously linked vaccines to autism, which has been repeatedly debunked by scientists.

On the other hand, Hillary Clinton has fought for disabled people’s rights throughout her career and has always treated us with respect and love rather than mockery and disdain. As a senator she pushed for legislation to improve the lives of individuals with disabilities, including co-sponsoring the Individuals with Disabilities Education Reauthorization Act and developing legislation that authorized over $1 billion for autism research and services. And as Secretary of State she worked on global human rights initiatives that included individuals with disabilities.

Acceptance and empowerment for all disabled people should be bipartisan goals. I hope going forward that the Republicans will learn that they cannot win national elections by acting with disregard and flagrant contempt for the 53 million Americans with disabilities.

By Alex Plank

The post This is the Most Important Election of My Life Because I’m Autistic appeared first on Wrong Planet.

While being interviewed on Access Hollywood, Braxton said: “My youngest son, everyone knows, suffers from, or I should say, suffered from autism.” When asked to explain, she added “I’m one of the lucky parents. Early diagnosis changes everything. I will tell you this. I will shout it from the rooftops. My son Diezel is off the spectrum.”

First of all, by implying that all parents need to do to “cure autism” is get an early diagnosis and enroll their child in the right programs, Braxton is essentially blaming parents whose children haven’t been “cured” of autism. It’s 2016 and I’d like to think that we’ve gotten past mother-blaming, which was unfortunately a common belief decades ago when the refrigerator mother hypothesis first gained traction.

Second, the idea that autism can be cured before adulthood is not only completely false, it is also damaging because it gives the public the dangerous impression that autism is only a childhood disorder. There is already a tendency for the media to focus on children with autism and forget about the millions of adults living with autism, which has created the misconception that autism is a childhood disorder. This fallacy has resulted in there being far less support for autistics once they reach adulthood, a tragic state of affairs because transitioning to adulthood is a time when autistics need a lot of support.

This is certainly not the first time that celebrities have been irresponsible when talking about autism. For many years, Jenny McCarthy has spread misinformation by repeatedly claiming that vaccines cause autism and convincing many parents to go along with her in refusing to have their children vaccinated. This not only hurt those with autism but caused dangerous outbreaks of diseases such as the measles. Later McCarthy made a similar bogus claim that her son had been cured of autism.

Celebrities have a responsibility to be informed when speaking about important issues because they have a lot of influence on what people think and can impact the lives of those of us with autism. We need to urge more celebrities to speak about autism in an accurate and productive manner and we need to call out those celebrities who spread false information.

The post Toni Braxton’s son was not cured of autism and it’s irresponsible for her to say so appeared first on Wrong Planet.

On Archer street, off the Orange line, there is an artist’s loft that hosts events regularly. About a year ago, I went there to a showing of the cult classic, Alejandro Jodorowsky’s “The Holy Mountain.” Before the show starts, I’m sitting around with other people, drinking crap beer and chatting about nothing. I’m sitting at a cheap table covered in sharpie drawings with two people I barely know. The one I know best, a friend of a friend, a painter named Zeke, says to the girl I’ve just met,“I can’t stand autistic kids. I don’t get why we give them a pass for being jerks. I get it with the low-functioning ones, you know, their lives are hard. But the high-functioning ones can be so mean, and they act weird, and sometimes they smell.”

I say nothing.

The girl nods her head, “Yeah, I know what you mean, like you can’t just get away with stuff and say ‘it’s okay because I have Asperger’s’.”

I should note that Zeke is a friend of mine now, we’ve hung out, and he’s actually very sweet. I’ve forgiven him for saying these things about me, in front of me, without knowing he was talking about me. He’s right that autistic people can be rude sometimes without knowing it, and sometimes we know better but still act inappropriately. A diagnosis shouldn’t be used as an excuse for bad behavior. But often, these ‘jerks’ are simply making mistakes, and don’t know any better. Part of autism acceptance should be making it more okay to politely correct people for social faux pas, because that’s how people learn.

All of my childhood I felt excluded, not because I was mean and I didn’t care, but because I had a history of being weird. By the time I hit junior year of high school, I had gotten pretty good at acting like everyone else. I didn’t feel normal, but I knew when to smile and nod, when someone else needed eye contact as confirmation, when to be expressive. I know I had made a turning point, because one of the country bros in my gym class turned to me in the locker room, both of us naked, and said, in a southern drawl that had magically appeared around middle school, “Y’know Quinn, you used to be pretty weird, but these days, yer not that bad, yer alright.”

When Zeke, now a friend, said he couldn’t stand autistic people for being weird, he was discriminating, plain and simple, and when the girl nodded her head, she was telling him it was okay to dislike them for their difference. These moments are why I decided to try to keep my autism a secret from all but my closest friends when I left my little hometown. I didn’t want my childhood weirdness to follow me the rest of my life.

I’m at a dinner party. A lot of friends are there, a few of them I’ve told I’m autistic at some point. I don’t know about half of them. I’m with a girl I had been seeing for a few weeks, Sarah. This is her first time meeting my friends.

A couple days before over a game of truth or dare, I finally told her I’m autistic. It was hard. I could feel myself resisting the whole time. I made sure to make eye contact when I told her, I could immediately see her perception of me change in her eyes, and I looked back to the floor. “I’m sorry you feel stigmatized,” she said, and she put her hand on my knee. I felt she didn’t get what I meant by “stigmatized” or the weight behind the three words “I am autistic,” but I said nothing. I felt like she was sorry for more than the stigma.

At the party a charming tall blonde guy from my college puts on some fuzzy earmuffs that were lying around, and Sarah compliments them.

“Thanks, they help with my Asperger’s,” he says, the joking tone is thick. When I was younger I trained my ear to hear it, so I knew when people were making fun of me. He sticks out his tongue a bit and flaps his hands and some chuckles ripple through the room. My date and I make eye contact. We don’t laugh. We don’t say anything either.

That blonde boy at the party never said anything explicitly harmful about autism. But he made a joke of it. By putting on the earmuffs, and making that comment, he made my struggles into a joke. It wasn’t a clever observational joke, like we might see on a television show. When people laugh at those shows, it comes from a mutual understanding, and it normalizes issues. Those laughs mean “I understand, this is part of life.” When he did it, he made Asperger’s into something to be looked down upon. ‘Look at goofy me with my goofy disorder and my goofy lack of understanding on the basic aspects of human interaction.’ He made himself into a parody, and in doing so he made me into a jester. I’ve thought about this moment plenty, tried to normalize it, tried to make it feel okay, and there are two clear points that prove his actions are an example of autistic discrimination.

1: If the joke had been about being gay, people would have been offended.

2: If I had spoken up about my diagnosis, people would have felt bad for laughing.

Afterward, I wished I had said something. It burned a hole in me long after.

About a week after, Sarah introduces me to her best friend. He’s skinny with a sharp jawline and the girl he’s dating looks a lot like her. She thinks he and I look weirdly similar too. I don’t think my jaw is that sharp. We get dinner together and her friend and his date talk about all the cute things they do together, and I eat silently and try not to feel bad for not being as cute a couple. We smile and we laugh about the bad music we liked when we were younger. On the way back, her friend and I want to go out to some bars, but Sarah lost her ID, and his date forgot hers, so we buy some Straw-ber-ritas and play a drinking version of Settlers of Catan at her place. I’m horrible at it. I overlook the intricacies and realize them a little too late to make a correction. Sarah and her best friend start talking about his band mates, and start railing on this one guy they are both annoyed with.

“What’s up with him?” I say.

“I don’t know, I’m sure you know the type, he’s just weird… Like, we say stuff and he just doesn’t get it,” He looks at my date, “You’re gonna hate me for saying this,” he says with a laugh, “but he’s just, he’s kinda autistic.”

She glares at him, I continue to live in silence. When he leaves the room, she apologizes for him.  Later that night, he drunkenly calls his girlfriend Sarah. Then, after they leave, Sarah breaks up with me. As I cry in her lap, I ask her why, I tell her I want to learn, to not make the same mistakes. She tells me I’m better off not knowing.

It’s not that he thought that this guy was autistic. It’s not that he called him weird, though that word carries it’s own flaws. It’s that as they sat around the board game, drinks in hand, they laughed about him. Neither of them accepted him for his flaws, they used my label to make it okay for them to not like him. By extension, does that mean they don’t like me?

In dark corners of the internet, people replace the term “retarded” with “autistic” and I still can’t speak up, I’ll either be mocked for standing proudly under my label, or for defending another person’s cause, some Social Justice Warrior (or, for short, SJW). But you can’t win on the internet.

Not everyone gets to build a mask, but I did. I decided I wanted a somewhat normal life, I figured out how to look normal, and it helps me, but I’m still autistic. I still get terribly lonely, I still struggle to read people, I still make things weird sometimes. I’m still faking it. The main difference is that since I’m more accepted, since people don’t know my label, they feel they can speak freely about it around me. This sort of stuff started happening sophomore year of college, and with the newfound acceptance and the freedom to wander the social landscape of my school, I couldn’t say anything. Still today, I often feel that I can’t, even though I came out to my peers. When neurotypical people judge autistic people, they do it silently in front of them, and then loudly when alone. Today, when I try to let down my guard, I can’t. I still do neurotypical things to make sure people like me more. Sometimes, I’m not sure what actions are my authentic self, and what are just me, hiding.

Earlier this year I was hanging out with my pal Max. Lately, I’d been encountering a lot of this sort of discrimination I described earlier. It drives me mad. I tell Max I want to come out as autistic to everyone, to show them how wrong they are about people like me, but I’m afraid. I know there is no going back. I can’t shake the feeling Sarah broke up with me because she doesn’t want to bear the weight of my disorder. I’m mad but I can’t blame her. Max is great, he lets me rant about it while we walk around the neighborhood, running errands. I tell him all these stories, and more. I tell him what it was like in high school, having everyone know. About having my parents come by the classroom when I was in grade school to explain to my class why I am different. If I come out, and somehow I become a successful artist, or writer, then maybe I can make a difference. In the late 20th century, gay artists came out and made art about their identity, and because of this, artists in my generation can make art and be gay, but not be gay artists. If I’m successful, I can be the autistic artist that paves the way for artists that are also autistic. But I don’t want to be the autistic artist. I just want to be me.

Max is one of those lovable goofs. Lots of people want to hang out with him. Because of this, he has an open door policy. He leaves his apartment unlocked, and people come by whenever. Once, because of this, his camera was stolen, and he was devastated, but he still does it.

When we get back, Zeke is there waiting for us with an unknown girl.

“This is my sister. She’s visiting!” Zeke says.

We greet her warmly, Max and I sit down and start chowing down on the subs we got from Potbelly’s.

“So what are you guys talking about?” Zeke asks.

“Autistic rights!” Max tells him, his mouth full of sandwich.

His sister perks up, “I work with autistic children!” she says.

It feels serendipitous, I’m suddenly excited. On this day that I am particularly bothered, I found one person who might get it. We start to talk about it, and things become clear very quickly. She hasn’t heard of identity first language. She loves Autism Speaks. I correct her at one point, and tell her a lot of autistic kids are very smart, just misunderstood.

“Oh, yes, they are! This one kid I work with, he’s so smart, he knows if he is a good boy at the end of the day he gets his treat, a blow pop!”

My heart sinks. I pull out my phone, and under the table, I text Max, “She’s talking about them like they are dogs.”

Max texts back “That’s what you are here for, bro.”

That night, I still said nothing. I regret this one the most. A few weeks later, I came out as autistic on Facebook, and began to speak openly about it on campus. I still act neurotypical, but I try not to hate myself for the mistakes I make socially. I don’t know how to not fake it anymore.

We use all sorts of language to talk about this discrimination, but for some reason, with autism we always put the problem on ourselves. In the documentary Autism in Love, Lindsey Nebeker admits “The first impressions I received when I was learning about autism were quite negative, and as a result, I felt incredibly ashamed of being autistic.” And I can’t count the amount of times I’ve heard and said that “Autism isn’t a good or bad thing, it’s just a difference.” Which is to say, the challenge we are trying to overcome is not just autism, it’s that autism is a bad thing to be. This stigma, these negative beliefs around autism, make us feel lesser, and in our language we blame ourselves for that feeling, when in reality we should be looking at the people perpetuating that idea. By discussing autism as an Identity, we’re able to challenge these notions and move forward with autistic rights, and call these issues what they are: discrimination.

It doesn’t just take place in the workplace. It doesn’t just take place in medical papers. It doesn’t just take place in the media. It’s an everyday occurrence that rears its ugly face in the day to day life of one out of every 68 Americans. It’s why the unemployment rate for autistic people is so high. It’s why the depression rates among people on the spectrum are so high. It’s why the media portrayals and autistic characters often seem unfair, and it’s why so many autistic people feel ashamed of their diagnosis. Ashamed enough to hide it.

It doesn’t matter if a kid is high or low functioning, they are a person, a conscious person who simply operates on different rules than you. It’s not their fault you don’t get it. High-functioning people are sometimes lucky enough to learn how to hide it. That’s the mask. The fact that we have to hide, that we ever felt we wouldn’t be accepted for who we are, is a tragedy. Sometimes more than their disorder, this sort of treatment makes it hard for high-functioning people to lead normal lives, This sort of treatment makes it harder for autistic people to learn and grow. This sort of treatment is why I feel the need to hide, and why people feel okay saying such hurtful things in front of me. This mask I made in high school, which I can’t seem to take off, is made of self doubt and self loathing, issues I didn’t always have, but I’m working on. Sometimes, it’s our job to learn how the world works. Other times, it’s your job to learn how we work.

Image: “She Wears A Mask For The World” by Stefanie Sacks

Actual names were not used in this essay.

The post A Mask For The World appeared first on Wrong Planet.

This tragic but fascinating documentary explores how a harmless special interest turned into a life-changing obsession that resulted in Darius being arrested over 30 times throughout his life.  I believe the film took a nuanced look at Darius and  treated his character in an understanding and compassionate light.  I thought it was absolutely fantastic and one of the best documentaries I’ve watched in a while.

The film has it’s international premiere tonight at the Hot Docs Canadian International Documentary Festival. Here’s the trailer:

Alex Plank: So how did you find out about Darius?

Adam Irving: A few years ago, my older brother sent me a YouTube video of a guy filming a train going by and you can’t see the man but you hear his voice and he’s so enthusiastic about the train, like it’s the greatest thing that ever happened to him. And at the bottom of the YouTube video, you see comments. A lot of people are writing “This guy is such a foamer. Oh he’s such a foamer.”

I was so curious what’s a foamer so I looked it up It’s a derogatory term for an individual who’s so obsessed with trains that they foam at the mouth when they see one. And it’s sort of an exaggeration; they don’t literally foam at the mouth but it describes their enthusiam.

In the U.K. they’re called trainspotters. In Germany they’re called metrogeks. There’s even a word in Japanese for these kinds of people. And they’re usually men. They’re often on the spectrum, live with their parents, don’t have good social skills, and they really, really, really like trains.

And so when I read the Wikipedia article about foamers, at the bottom there is a section on notable foamers and Darius is one of them. So I clicked on his article and I was hooked the first line that I read about him that said “Darius Mccollum has spent more than a third of his life in prison for impersonating New York City transit workers.”

I thought “what an interesting crime to spend so much time in prison for.” He’s just pretending to be a transit worker. He wasn’t hurting anyone and he wasn’t damaging any property and it’s not like he just got a slap on the wrist.

He’s doing years and years in maximum security prison for these crimes. In my mind the punishment–like the sacrifice he made– was very, very high for the very low level of reward that he got. Driving the train is the greatest thing the world for him. But, if someone said to me “you can drive this train for five minutes but if you get caught you’ll do five years in prison,” I’d say no way. Driving a train is like job people get paid to do.

AP: And people don’t want to do it; I feel like that’s one of those jobs (especially driving a bus).

AI: Yeah I get it. Make the stops and collect the fares and deal with people. But he loves it. It’s like being in the military. It’s a sense of duty. He feels it’s a public service that’s making the world a better place.

And then I noticed from reading the Wikipedia article that there are actually a lot of other articles in The New York Times, the other New York papers, and this amazing award winning Harper’s magazine article about Darius called The Boy Who Loves Trains that just captured so well his obsession and his Asperger’s and what it was like for him as a kid to be in this world on the subway.

And it really humanized him in a way that some of the tabloid newspapers in New York like the New York Post and New York Daily News didn’t. They would just say like “Transit kook arrested again” and “Bus Bandit Caught Again!” But the Harper’s article really got into his childhood and how he had trauma and just all the things that happened to him and I thought this would be a really really good documentary. That was three years ago and now I’m about to premier the film.

AP: So you only shot it for three years?

AI: I only shot it for one year actually and then edited it for two years. So when I started filming, Darius was in jail. He’s usually in jail. So I wasn’t able to film him at least for a while. So in the meantime I interviewed about fifteen people in New York who knew him, like his lawyer, his social worker, therapist, people that worked on his case. And I also interviewed his mom in north carolina. All the while just kind of killing time and getting what I could until Darius got out of jail.

So finally he got out of jail after me filming for maybe five or six months (although I also did film in the jail twice.) And then he got out and I had really as much time as I wanted with him.

But I live in LA and he’s in New York so I had to make a trip and it was like the coldest winter in New York in forty years. So it was not pleasant and I just filmed as much as I could with him because I knew that at any moment he could get arrested and be back in jail and then I wouldn’t have access to him anymore.

AP: Did you know much About Asperger’s before this?

AI: Yeah, yeah. I knew what it was and knew what kind of defined it (what the traits were.) And I think I even knew that there was a connection between trains and people on the spectrum. That’s a particularly common interest especially among boys. I remember reading that Thomas the Tank Engine is the favorite show of boys on the spectrum.

So yeah, I did actually know a bit. My initial major in school was psychology and my dad is a therapist. My dad is actually in the movie, Dr. Howard Irving. So that wasn’t so much of education for me.

What was educational was learing about the spectrum community, such as the different organizations like Grasp and ASPEN and ASTEP that I didn’t know. All I knew was Autism Speaks but I didn’t know about some of the others and that they had actually advocated for Darius and helped him; try to help him at least.

AP: Yeah I’ve spoken at the aspen conference.

AI: Oh so you know Lori.

AP: Yeah. When you were filming Darius, did you actually film him committing any crimes?

AI: No I decided when I started the project that it that I would not. I would not be a witness to any of his crimes whether filming it or not because then perhaps legally I would have some sort of moral or legal obligation to stop him or report him. And I didn’t want to take that risk because then not only would Darius get in trouble but I would possibly get in trouble too which not only would mean the end of my movie but possibly the end of my career if I participated in any of his crimes or encouraged him.

And also even if even if he didn’t get caught and I didn’t get caught and I was able to film him committing a crime and I ended up using it in the movie people could say that I encouraged him or he only did it for the camera and if I wasn’t filming him he wouldn’t have done it. And so I just didn’t want to put myself in a situation where I would make my life or Darius’s life worse by filming his crimes because the truth is he’s done it so many times before which had maybe not been documented in the moment. But he’s been arrested. There’s the mug shot. There’s news footage.

I just didn’t think it was necessary to film him in the moment as much as I did kind of want to see what that would look like. For his last arrest in November, he took a greyhound bus on a joyride. It would have been really cool to get the footage from the bus (if there’s a camera in there that’s recording) to show what his face looks like when he’s driving. Because he had the bus for like thirty six hours just driving around New York by himself and I think it would be really cool to see what that would have looked like, how we got in there, how he got out of the depot and that kind of thing.

AP: It’s fascinating. How did you get in touch with Darius?

AI: I flew to New York and had coffee with a woman named Jude Domski who wrote a play about Darius called Boy Steals Train. She’s in the movie. She adapted it and the BBC did a radio play by the same name.

So she gave me the 411 and then I went back to LA and started exchanging letters with him. And we exchanged over one hundred letters. So I got to know him pretty well.

I also tailored my letters to what I believe someone on the spectrum would really connect with. So my initial letters to him were very precise. They were unemotional. They would just kind of state facts because I thought he would respond to that best.

And then as time went on I would answer some of his questions. He asked if I had a girlfriend and what I would do if I won a million dollars and all these sort of personal questions that had nothing to do with me making a movie about him but I wanted to get to know him.

So then finally after months of writing letters I decided to actually meet him in person in jail in New York at Rikers Island. And the idea was if we connected, if we hit it off, then we would make a movie together.

He was just a normal guy. I was just very surprised at how normal he was, seemingly. And he was surprised; he thought I would be like older a little bit. He was like “you’re just this kid” but I convinced him that I was a professional and a smart and mature individual and he said “Let’s do it. Let’s make a movie.”

AP: What was the most surprising thing about Darius for after meeeting him?

AI: I guess his calmness and his sense of humor. So for calmness, I just assume that just someone who had been through the prison system so many times with all of the intimidation, , violence, fear and overall terrible living conditions, I would have thought that he just be a little bit more rough around the edges; like a tough guy; not mean but I thought he’d have the posture of a tough guy.

But he was like a teddy bear; almost like a little kid in an adult’s body. And then the sense of humor thing was surprising again because you think after going through all of that he won’t have much of a sense of humor. But also because my understanding of Asperger’s is people on the spectrum have difficulty with certain nuances or they might not pick up on humor; like they might not understand a joke. Like if I just said “oh have a seat” they might take an actual seat.

AP: Yeah. It’s literal thinking.

AI: Yeah, literal thinking, exactly. But he understood how to be charming, he understood not only how to take a joke but he also had no problem teasing me and making fun of me which I did not expect from someone on the spectrum. So that was surprising that he was able to poke fun at things, poke fun at himself, poke fun at other people, and just laugh at jokes like a neurotypical.

AP: What was the biggest thing you learned about autism that you hadn’t learned before. I mean other than what you’d said.

AI: Yeah, Lori Shery told me that that statistically individuals on the spectrum are no more and no less likely to commit crimes in the United States. And I would have thought they would actually be less likely because they’re so–

AP: Well they’re more likely to be a victim of a crime.

AI: A victim yes, of course, bullying, all kinds of abuse, being taken advantage of even in prison. But I guess I just assume because hey tend to like rules and structure, that they’d be more likely to follow the law. But it turns out statistically either they’re about the same.

And someone that I interviewed in the film, Marcia Scheider (she’s at ASCAP), does employment consulting with companies to encourage them to hire people on the spectrum. She’s in New York and so she said you can have Asperger’s and be an asshole. Just because you have Asperger’s doesn’t mean–

AP: Just because you have Asperger’s, you’re not a saint.

AI: Yeah exactly just like someone in a wheelchair can commit fraud. Someone who’s blind can beat you up. Being a jerk just doesn’t discriminate.

AP: But that’s what’s so fascinating about Darius. I mean he had his crimes are pretty much victimless.

AI: Yes

AP: That’s what was striking to me.

AI: They’re never malicious. They’re never meant to deprive anyone of a property or service. But he is taking a risk that theoretically could hurt people and that could be perceived as a “bad thing.” Maybe evil isn’t the right word but it’s a disregard for other people’s well being. But the way I see it is anyone driving a train is putting passengers at risk if there’s an accident.

He’s just as qualified, if not more qualified, than younger drivers who have been only driving buses and trains for a few years. He’s been doing it for thirty five years. So he’s actually more experienced, assuming when he is driving he’s doing it regularly and paying attention and all that. Now he isn’t formally or properly trained but that doesn’t mean he’s not good at what he does.

But I don’t see him as a traditional criminal; someone who is committing a crime for their own benefit which usually means someone else is deprived of property or safety or whatever.

AP: What do you think about the latest news with this case? [After news of a Julia Roberts potentially starring in a movie about Darius, the MTA is attempting to use the New York State's "Son of Sam" law to deprive Darius of financial compensation from the movie.]

AI: I think it’s very interesting. In general I’d say Darius is a very polarizing figure. I love reading the comments in any [online] article about Darius because I find that about seventy percent of people will say “Give this poor guy a job. He can’t help it. H’s addicted. He’s never hurt anyone. You know he doesn’t belong in jail.” And then the other thirty people say “He’s a criminal. He’s a risk. He belongs in jail. Keep him away from the trains. He’s a crazy guy.”

I guess you have to ask “were they really crimes in the traditional sense that like he hurt someone or damaged any properties now and now he’s benefiting financially through this movie. That’s one thing. ”

The second thing is–and this is more important and this is what’s more polarizing– should the MTA be getting that money? Why are they going after him? Because one could argue that they’re the ones that have caused a lot of his problems.

One by never hiring him.

And two, when they do find him on the property, instead of just doing nothing or talking to him or asking him to leave, they almost always call the police which results of him getting arrested and going to jail, sometimes when he hasn’t even done anything wrong. Like he may be wearing blue pants and a blue shirt, obviously because he kind of wants to look like a transit worker. But he isn’t actively impersonating anyone. He’s just walking around but he feels comfortable wearing what looks like transit gear.

And if they just see him at the end of the platform kind of looking suspiciously, they’ll call the police and they’ll arrest him even though he hasn’t broken any law.

AP: I don’t understand why he got arrested the first time.

AI: When he was fifteen? Because he drove a train 18 stops by himself.

AP: He was given permission to by the driver and he was a kid .

AI: Yeah but the driver is not in a position to. It would be like if a pilot gave a kid a permission to fly a plane a kid still not allowed to fly.

AP: I don’t think of kids should get arrested though. It’s a kid that was given permission by an adult.

AI: Minors are treated differently. They’re not given conventional prison time. Darius, when he was fifteen and he was caught was not given the kind of punishment that he would get now for doing the same thing. It wasn’t that big a deal although it was the first of many.

Yeah the driver handed over the controls to him. But Darius accepted them. He could have said, “No this is against the law. I don’t work for the MTA.” But of course he didn’t say that because he was dreaming of it for years. He wanted to do that and he knew even at fifteen (he wasn’t stupid) that if he got caught he’d probably get in trouble with the police. So he has to be held responsible to some degree. The problem is that the guy that gave him the controls obviously is a grown up and should have been punished more severely and should have been fired but instead was just given a few weeks suspension. Whereas Darius who’s just this kid who didn’t really know better, it really ruined his life. So it was like an unfair proportion of punishment and balance in that case.

But getting back the MTA thing, I can see the MTA’s perspective that Darius has embarrassed them, he has put their employees at risk, he has put their reputation at risk. Darius has proven how easy it is to take an MTA vehicle. And he makes the MTA look bad. So to get revenge and to get compensation I can see how they would go after him for money that he got from making them look bad.

But you can see the other perspective of that. The guy doesn’t have any money. He never really hurt anyone. And Hollywood is interested in telling his story. Why shouldn’t he benefit from it? It’s not like he killed someone and now he’s getting money as a reward for the crimes. he’s getting a reward for his interesting life and his good service to the people of New York for driving them around for free.

AP: Yeah and it’s kind of funny though because they’ve had all this time to fix the security flaws and they haven’t done anything really.

AI: They’ve tried. Since 9/11 almost every transit agency united states has beefed up security through surveillance, extra cameras.

AP: But that’s not a reaction to Darius

AI: No it’s not a reaction to Darius. When he is released, they put up posters, in staff areas to warn them that he’s just gotten out of a prison and you should watch.

AP: That’s only for him. He’s not the bad guy really. The person that they don’t want stealing the train is a terrorist. And yet they haven’t really done anything to respond to what Darius has done. It’s kind of like he’s like a hacker in a way.

AI: Yes it’s true. He’s like a hacker.

AP: Where he exposes a security flaw but instead of fixing the security flaw they just go after him.

AI: Yeah. There’s actually a good [article] I think it was in the New York post or the New York Daily News in September of 2010. The last time Darius was arrested he took a bus as well. They actually went into the bus depot two days later where he took the bus to show how easy it is to take a bus. And they actually went onto the bus and one of the reporters took a picture of himself. And then he went back the next thing they did it again to show that even after Darius got arrested for this crime the bus depot in New Jersey didn’t really take any extra measures to to stop it.

But yeah I don’t know why they don’t. I guess there’s only so much they can do. And also, luckily there aren’t that many Darius copycats.

AP: Do you think there’s any validity to the idea that he shouldn’t be put in prison because of the Asperger’s element? Because for me, I noticed sort of an undertone in the movie that maybe he’s not to blame entirely because of the Asperger’s but I didn’t buy that. What do you think?

AI: I could see that perspective but I tried in the movie to show that Asperger’s is the reason he likes trains but the reason he’s committing a crime has to do with mental illness. He has depression. He has anxiety. He was stabbed as a child and it affected his view of the world. It made him feel like he didn’t have any value. And the only way he could get value was by being somebody– being part of a team.

And so by being part of the MTA and having the uniform and having a rank and a position, that makes Darius feel that he matters and he has value.

He really thrives on [the media attention] because again, when he was a kid he felt like he was nothing. And by getting in the newspaper, getting on TV, people are talking about him. It makes him feel like he matters– like he has a place in the world. And so the media attention, the uniform, being part of of this MTA team and having a duty– like getting people from point a to point b– all that makes them feel like a somebody.
And that’s not healthy. There are many times in this life where he was not loved, where he was alone. He doesn’t have a lot of friends. He doesn’t really have much of a family life. So that to me is what is at the core that’s driving him, not the Asperger’s.

AP: Yeah and the movie in a way is really heartbreaking. Did you expect it to be as sad as it is?

AI: No. . . It became more heartbreaking. If it was a movie made for me, I would probably have made it a little bit more about the logistics of how we actually steals the trains. Because that’s what fascinated me–sort of like Catch Me if You Can–how he would kind of manipulate and charm his way in–that was really interesting to me.

But the end of the day I found that when we started testing the movie out people responded more to the emotional– the sort of pathos– feeling for Darius that he’s been through a lot. That he’s a nice guy. And that he’s been screwed over by the system, that he fell through the cracks, and that he’s just a good guy that wants to do good in the world.

And the more we talked about how we got the keys and how we got into this train yard and how he got away with it that time, the less we would feel for Darius as a victim of trauma even you could say racism– just all kinds of things because of the sort of lot in life that he’s been dealt.

So if people are willing to sit through a four hour movie, I would get into more of the nuts and bolts of his imposter life.

AP: How did he generally do it?

AI: There’s four or five main ways.

One, and this is what surprises and angers people the most, is that MTA workers essentially helped him and gave him their shifts so that they got paid and he did the work. They took advantage of him.

So some driver, instead of calling in sick, would call up Darius and say “I don’t want to go to work today. I want to go and see a movie with my wife. Can you take my shift?” And they would maybe give him their ID, maybe their uniform and Darius would just go in there confidently hoping they don’t check the ID. He would say “I’m here to sign out the A train.” And they say “OK. No problem. Take train 4412.” And he would return at the end of the day and as long as nothing went wrong he would get away with it. And the guy who was supposed to drive the train would just take over the next day.

Number two would be in the middle of a shift he would take over. So if there was a bus driver who had an eight hour shift, they would have arranged to meet Darius at some point on their route and Darius would get on the bus to relieve him, in uniform. And the passengers of course thought it was just another bus driver taking over. But that that person’s shift still had four hours left but Darius would finish it.

And again. As long as a supervisor wasn’t there no one would know that any crime had been committed.

AP: So he’s done this a lot. He’s only caught thirty something times.

AI: Yeah he claims to have taken over one hundred and fifty buses and I think several hundred trains shifts. In fact he claims at certain points in his life he would have as many as thirty or forty subway conductor shifts a month. So literally every day he was driving.

So another way he would do it would be to just get a uniform either from borrowing one, getting one from someone who retired, or just stealing one from a locker. And he would put on the uniform, go to work, and just give either a phony name or the name of someone that he knew that worked there. And then they would give him a vehicle.

Another way that he did it is he would just find a way to get into a rail yard or train depot by walking along the tracks through an unauthorized area or getting a ride in with someone who worked there. He describes it as once you’re in you’re set. Because when you’re in there no one would question they’re not supposed to be there especially if you know the lingo and you’re wearing the uniform and you look like you know where you’re going.

So once [he was in] Darius would play chess with the guys, he would take a shower. He might look look at the bulletin board to see what union meetings were coming up and he might go to the union meetings.

And so he started to become a regular face at a lot of the big rail hubs like Coney Island–anywhere where it’s like the end of the line where all the trains go to rest. That’s where he would sneak in. And once he was in he could just take a bus and drive it out and no one would suspect that it was stolen. Because you know he could drive it well he would just wave at the guard.

And he also got a lot of keys to things over the years and if you have keys you can get into certain rooms. You can access certain vehicles. So those are the main ways that he did it. He never used force or violence.

It bothers me in the media when they use the term hijack because hijacking is where you usethe threat of violence to commandeer a vehicle that has passengers on it. He never did that. He just essentially did the job of the driver until the job was done and then went home. He never took over a train from an existing driver who didn’t want to give up their control.

AP: Do you have anything else to add?

AI: I noticed in people commenting on seeing my movie that some of them were bothered by the fact that the term Asperger’s was used because it’s not in the DSM IV. They wanted “autism spectrum disorder.” And I even noted some comments online in articles about Darius, “This reporter is an idiot. He’s still using the word Asperger’s. No one uses it anymore.”

AP: Clearly people do.

AI: and I actually think it is clearly related to autism and it is on a spectrum. But I think it should be its own category because it’s different than someone who’s a nonverbal autistic. You just kind of know it when you see it and I don’t see anything wrong with giving it its own designation. I don’t see the harm in that and I don’t see why someone who uses the term should be considered unprofessional or outdated .

AP: I understand why you would not want to use the term [Asperger's] just because there’s a fine line. It’s sort of an arbitrary distinction. But obviously in practical use it does make senseto use the term Asperger’s.

AI: Also, a lot of people who saw the movie just kind of assumed that Asperger’s is a mental illness and I would sort of have to teach them that it’s a neurological disorder

AP: Yeah it’s a developmental disability.

AI: And people who have Asperger’s, assuming all other things are emotionally healthy, do know the difference between right and wrong and should, I believe, be treated like a like a regular criminal if they do know the difference between right and wrong.

Obviously if they’re being approached by a police officer or they’re being arrested I think it’s helpful if a law enforcement officer knew they might respond differently to certain commands. They might get scared or panic or not want to be touched or things like that in a way that might lead to a law enforcement officer to think that they’re resisting.

So that’s important but otherwise in a court of law I think they should be treated the same. So I think it’s important or stand that Darius’s issues in not really getting the law and not being able to stop himself from from the crimes is is really not about his Asperger’s. There are other things that are going on.

And I think that’s something that audiences should should know.

AP: As you said there are so many people on the autism spectrum who like trains and he’s probably the only one that’s doing this.

AI: Yeah. There’s so many people who like trains but don’t steal them. And so when people watch the movie are like “oh poor guy has Asperger’s he can’t help it” I’m like “no. Most people of Asperger’s are perfectly capable of loving something studying it memorizing it and not committing a crime to get more involved with it.”

AP: But you know it’s interesting because I think that a lot of times people on the spectrum are super interested in something and sometimes that gets misinterpreted as being nefarious or being a bad thing. Like, my friend Jack robeson., when he was in high school, he was obsessed with chemistry. So he actually started making explosives and making YouTube videos.

AI: People thought he was a terrorist.

AP: He actually got arrested and faced decades in prison. But he won the case but that was a pretty traumatic event for a teenage kid.

AI: Yeah. Yeah I can imagine. I guess it’s ideal when it’s a topic that no one would suspect you could do anything nefarious with. Like Temple grandin you know. Like no one would think “Oh, she likes designing abattoirs. No one would think she would do it for evil. She’s just obsessed with making the murder of cattle as humane as possible. And that just kind of makes sense to people. But chemistry you can imagine can get misinterpreted as doing stuff from evil.

 

The post Off the Rails: Documentary on Autistic Train Thief Darius McCollum appeared first on Wrong Planet.

This sort of thing, while meaningful, is also par for the course. I know how people respond, I know what to expect, but this response surprised me. People generally weren’t candid about their previous expectations toward autism.

“That’s so strange that you feel the need to hide that part of yourself,” they told me, “Autism is sort of the ‘it’ syndrome right now.”

They paused, searching for a better way to say it. I was trying to wrap my head around the idea.

“I don’t mean to say a disorder can be fashionable, but… it’s like, the cute syndrome.”

I wasn’t sure how to react to this. It still floats up in my mind and I still have mixed feelings. It bothers me that people can diminish the struggles of my disorder by considering it the “in” thing to have. I imagine people rushing off to their name brand psychologist to get their name brand diagnosis. But also, I like being told I’m cute. The simple fact is that I, as well as many others, struggle with how the public perceives this disorder and how it is portrayed in popular culture, because that deeply informs others’ reaction to me, whether they know about my identity or not. There’s me, and all my nuances and personal traits, and what I look like to my peers, and there’s the floating idea of what autism is, and what it looks like, and the two seem impossible to separate.

Autism and popular culture have had a complicated relationship for a long time. In 1988 the film Rain Man introduced the disorder to the general public. After its release diagnoses in the United States skyrocketed, and so did the presence of autistic characters in pop culture. In the 1980’s there were only two films starring autistic characters. In the next decade there were thirteen. The older the movie or book or show, the less autistic the characters often seem, some of them carry the label ‘autistic’ but with very few symptoms. Instead, the characters are inflicted with some generic mental disability, which when labeled as autism sells more tickets.

Rain Man, however, was nuanced. I’ve always appreciated the story, not just on a personal level, but also as a writer. It told a story set in a time when the common way to deal with a diagnosis was to send it away, to a mental institution. The filmmakers show the institution as a welcoming, safe, comfortable place for the character Ray, but in reality, these places were often run terribly, and kept up worse. A real life Ray would have found his handicap intensified by such a place. Many autistic children born in this era grew up to have severe mental deficiencies because so little of their nature was understood. Dustin Hoffman showed immense respect in his performance, painting a multifaceted character that felt human, but because of his place on the spectrum he is often a nuisance to the story, or worse, a vehicle solely there to move the plot forward. I don’t mean to bash Rain Man, which I consider a great first step, but it’s just that; the first step.

Today autistic characters are everywhere. Many works of fiction feature characters, central and less so, on the spectrum. Their presence on television, in film, on stage, and in literature keep the disorder in the public eye, and relevant to the lives of those unaffected. I should preface this by saying I mainly focus on television characters for this column, because the hours of narrative give an opportunity to paint the most complex images of these people, and because we are a society that has a television in every home. In many ways, when we watch these shows, we welcome them into our living rooms; we live with these characters.

Some of these characters are notable. In Parenthood, young Max Braverman is diagnosed in the first episode. The show isn’t necessarily about Max, even when it tells one of Max’s stories, but it is as honest and fair a treatment of the character as it can be. Max feels real, like a person even. When the show first began to air I was still in high school, and Max’s story mirrored my own experiences with diagnosis so much that it was sometimes painful to watch, and so I had to stop. I’ve since gone back through much of it. The show’s creator, Jason Katims, wrote from his own life, his son being diagnosed with Asperger’s, and the show’s perspective of the parent observing autism from afar is clear. After all the show was called Parenthood. Katims put a lot of work into making a realistic autistic character. He brought in a behavioral psychologist to help. Because of this, almost all of Max’s stories center around his autism, and his struggles to connect with peers. When he finally makes friends they too struggle with their own disabilities. As real as he feels, It’s still impossible to color Max as a completely real person, his identity is so engulfed with the diagnosis. Nothing seems to happen to him wherein Asperger’s isn’t at the center. While I want to criticize the show for taking a somewhat medical approach to Max Braverman’s autism, opposed to an experiential or personal angle, I can’t completely. Watching Max’s father struggling to connect with his brash son during an adventure to a theme park, I couldn’t help but think about my own relationship with my parents, how much work I was growing up. Max feels real and heartfelt, and in an era where everyone is still figuring out how to handle these issues, that is enough.

The other commendable bit of storytelling I have to mention is the character of Abed on Community. I’ve been a big fan of Dan Harmon, the showrunner, for a while. My interest peaked when he unofficially diagnosed himself with the disorder. Harmon talks about autism extensively in a podcast episode he recorded with the author of Neurotribes, and you can see his complex understanding of  Asperger’s in how they discuss it. I highly recommend looking it up. Harmon’s character of Abed struggles with social conventions but he is also, as another character puts it, a Shaman. His high intelligence isn’t portrayed as if he were a savant, simply a smart guy. He’s self aware, aware of the camera, aware the way the show’s world works, in a way none of the other characters are. Most importantly to me, he has a strong, close knit, supportive group of friends. The most adversity Abed faces comes from the way the world reacts to his oddities. In a pivotal episode, his peers find out a girl likes him, and jump at the opportunity, acting like it’s rare or special for a girl to be interested in someone like him. They try to force him out of his comfort zone to talk to this girl, while saying comments that, unknowingly, could be hurtful to someone on the spectrum, usually along the lines of “You might never get another opportunity [for a normal life] like this!” They try to train him, to fix him. All the while Abed goes along with his pals, without a protest, or an expression of discomfort. The narrative concludes with the realization that Abed knows what he’s doing. He’s aware of the subtle charm of his goofiness, and that really, he just prefers the girls come to him. I haven’t seen an autistic character portrayed with such competence and humanity since Abed, and other creatives should take a page from Dan Harmon’s book.

Simultaneously, we have narratives from shows like TheBig Bang Theory, which I recognize is a beloved show filled with beloved characters. Every time I visit my parents their DVR is loaded with episodes. But I can’t get on board with it. When I was a kid, my parents would lovingly compare me to the most on-the-spectrum character, Sheldon. I would cringe at this, and it took me a long time to understand why. It’s not that the portrayal of Sheldon is unfair to autism–it’s a parody, he’s an amped up version of a real person, played for laughs. And I strongly believe that it’s okay to laugh at autism! The problem is his peers. In a show where the nerds are usually the butt of the joke (seriously, try watching it without a laugh track, it feels mean.) Sheldon is the at the bottom of the totem pole. His friends can’t stand him, they barely put up with him. You can hear a palpable distaste for his antics in their voice, which they keep subtle so as not to perk his untrained ears. It brings back memories of bad interactions with less than understanding neurotypical people, who don’t mind laughing at a real person’s symptoms. Previously, I’ve dismissed it as just a television show, but the problem is these prominent bits of media define culture, they define people’s expectations of each other, and they define how we should and shouldn’t react. According to The Big Bang Theory, autistic people are obnoxious and unbearable, and should be treated with subtle hostility and contempt. At least it’s funny.

There’s lots of examples of bad autistic characters out there, many I don’t feel the need to list. They suggest false and unrealistic images of autism. They suggest autistic people are defined by their disability, not the other way around. They suggest autistic people can only connect with other autistic people, and can only find love with other “odd” people, because they are too weird for anyone else to be interested. Characters yell and fight with each other when someone suggests their loved one has autism, as if it is some horrid accusation. The problem with most media portrayals of autism isn’t that it’s unfairly stereotyped, it’s that it’s usually too sympathetic, opposed to empathetic, and through that it fuels society’s problematic tropes and anxieties about autism. The autistic character is trying, look how hard they are trying. The autistic character wants to fit in, but they can’t and they never will because autism. Don’t you feel sad? Don’t you feel sorry for them? You know there is more to you than that. From this angle, pop culture is caring and compassionate, but it lessens us, it makes us look weak and in need of charity.

We are not at the mercy of our label, this is not how the world has to look at autism. The label is defined by those who live under it, not the other way around. All characters, not just those with autism, need to be portrayed with empathy, not sympathy. A good friend once told me you have to love every character you write, because that’s the only way you’ll get them right. Autistic characters need to be shown outside the light of their disorder, in just as complicated and nuanced a way as neurotypical characters are written. We shouldn’t be consulting doctors and studied experts on the disorder to get these people right, we should be consulting the real life people who live with the diagnosis themselves. This is how you love a character. That is how you make them a real person.

If you want to see this change, get involved in the creative world. If you write, write autistic characters as you’d like them to be portrayed. If you act, fill autistic roles, the same way Hollywood should cast Pakistani roles to Pakistani actors, and trans roles to trans actors. Simply put, represent your people. We already have great examples of this. Though in my own experience, these have been minority cases, they exist. We have writers like Dan Harmon out there, making good work. The creator of Wrong Planet, our very own Alex Plank, consults for a show with an autistic character, FX’s The Bridge. I’m no regular viewer, but I can say honestly that he seems to be doing right by the label.

The post The “Cute” Syndrome: A Survey Of Autism In Popular Culture appeared first on Wrong Planet.

Autism In Love is a documentary that takes viewers on a journeys into the human experience of love through the lens of four different individuals with autism. This documentary explores powerful emotions between parent-child, intimate partners, and relationships with self and others across various stages of life. It is raw, honest, and real.

Emotional connection and vulnerability are not just ‘touchy-feely’ pseudo-science. Love and human connection are necessary, something we are hardwired to achieve.  We value a sense of belonging and it hurts to feel alone. This does not change with the neurological differences associated with autism spectrum disorders.  Autism In Love explores the powerful need to connect through their stories: Lenny, the single twenty something; David & Lindsey; the couple about to get engaged, and Stephen & Gita, a married couple of 20 years contending with the fragility of love.

Generally when autism is the subject of a documentary the dominate themes are of disability, usually portrayed from the able-ist director’s point of view.  Often filmmakers portray autism in a narrow context, assuming to educate the viewer on a disability, with the autistic person as inspiration, or parent as hero.

Autism in Love does something different. Filmmakers Matt Fuller, Caroline Groppa, and Ira Heilveil avoided interviews with professionals, relying almost exclusively on narratives by people with autism and their families.  The documentary escapes common clichés and sometimes harmful representations of autistic people by letting the stories of real people be at the center.

Autism in Love is more than a documentary about autism.  It’s a courageous story of vulnerability.

Vulnerability, as defined by Brene Brown, is the courage to show up and be seen when you have zero control over the outcome. It seems that these filmakers had no outcome in mind, no storybook ending.  During interviews and observations the story evolved.  All that was asked of Lenny, Lindsey, David and Stephen was to explore their thoughts and share their personal memories about their experience of love.

By the end of the film the message became clear. Love is a human need, a universal quality that connects all of us. To love and be loved takes vulnerability. Lenny, Stephen, Lindsey and David are living that message. 

Each individual in Autism In Love is unique.  Each highlighting another important aspect of love.  Each offering something to be learned.    

David & Lindsey

With the endearing charm of a Hollywood rom-com couple, Lindsey and David’s story begins during the tender process of figuring out if your partner is ‘the one.’  At first glance, this couple seems to represent our common love mythology that opposites attract. Lindsey, the doe-eyed creative pairs with David, the nerdy meteorologist. Of course, viewers are immediately rooting for this couple.

David has his quirky and sometime comical ways of boiling down dating, love, and intimacy into an easily understood formulas. (And in case you haven’t seen Autism In Love just yet, the answer is ‘yes’, each aspect is weighted to allow more important qualities to have a larger effect on the solution.) Yet ultimately he concurs “Love is complex, a force, which is not quantifiable.”  Something we all agree upon.  Lindsey is the self-reflecting artist.  She is soft spoken and values her quiet time. She is ……

As a couple, Lindsey and David are captured having several misunderstandings.  One such memorable moment is when David attends to the weather report, rather than his partner. Presumably, David’s interest in the weather channel is meant to represent a common characteristic associated with autism—the over-focus on a special interest. Yet all of us in intimate partnerships have had misunderstanding such as these. All of us have ignored our partner, or been blown off.  If I had a nickel for every time I see this happening, not only in my own relationship, but the relationships between those who are close to me…lets just say I’d have lots of nickels and leave it at that. This experience, missed communication and moments between people, has less to do with autism and more to do with the pitfalls of being in a relationship.

In the final moments of the film, we come to understand that David and Lindsey have very real differences. Yet, they both look to one another as a source of comfort and safety. What they have in common is their desire to fully understand one another.  Lindsey and David choose the risk of being their authentic selves, of being vulnerable, even when it feels overwhelming. In doing so, they both realize that although they were whole without each other, they create something beautiful together, something with a whole lot of love.

What we learn: 

Learn to be brave, learn to be vulnerable. Being your authentic self with a trusted partner is essential to developing a secure base for lasting love.

Lenny

Lovable Lenny is a young man in his early twenties that feels broken.  It hurt to watch his negative self appraisal and the way he devalued himself.  The opening of the film captures Lenny in his apartment, experiencing deep despair about having his heart broken. The millennial in the film seems to have an attitude that is all too common in his generation, that money makes the man.  Lenny also shares his antiquated views on love and marriage –including that woman only marry men that make more than them.  Interestingly, Labor Bureau statistics indicate that woman out earn their husbands in 38% of marriages, with this number growing substantially each year.

During the film Lenny’s mother gently tries to guide her son’s thinking, inviting him to question his own assumptions about what woman want. His mother is clear, Lenny has some inadequate views about love and relationships that he has likely gathered from youtube videos, media, and immature acquaintances.

Through Lenny’s story, we understand that he’s a good person with big heart.  Being in his early twenties, Lenny oscillates between wanting to be in a committed partnership and wanting more casual experiences. Throughout his story, Lenny allows us into his deepest pain. He feels that he is unlovable because he has autism.

Lenny engages us in his courageous quest to figure out if he is ‘enough.’  Unfortunately, Lenny believes he isn’t. He loathes himself. I cringed with concern when Lenny confidently espouses what it takes to get a girl. Yet this moment is nothing compared to the empathy viewers feel when Lenny’s isolations becomes too much for him to handle. He grapples with guilt after hiring a prostitute.  He breaks down in tears filled with self-resentment, contempt, and deep shame. His life unravels quickly and viewers must contend with the hard reality of how isolation and failure affect a young man’s mental health. During the filming, his despair is too much and he is hospitalized to seek treatment for his comorbid depression and autism spectrum disorder.

It is hard not to feel for sensitive and sweet Lenny. If he could only see himself through the viewer’s eyes. He is perfectly imperfect. Hopefully he figures this out before it is too late.

What we learn: 

Learn to reject messages of inadequacy related to labels. You are not broken because you have autism. You are worthy of love and have value. If you don’t believe this, find a way to start. Surround yourself with people who allow you to be you. Internalize messages that you are good enough.  Seek help when it is needed.

Stephen
When viewers are introduced to Stephen, we see a middle aged man sitting in a kitchen with his aging parents. With an homage to Rainmain, Stephen is captured watching Jeopardy, chiming in with the correct answer to Alex Trebeck’s questions.  Based on this first scenes, viewers contend with their own biases about love and relationships. Like many others, we immediately assume that Stephen is a lonely man with autism that lives with his parents. This is in fact true for the moment, but the loneliness comes from bereavement. His wife of 18 years recently lost her long battle with cancer.

Stephen’s autism appears to be what many consider to be a classic representation of autism with noticeable processing delays, concise verbal responses to direct questions, and some repetition in speech. His life is full of routines and he seems to thrive within this structure. Many might wonder with this classic representation of autism, is Stephen capable of love? Thankfully the filmmakers rejected able-ist assumptions by showing Stephen and Gita, a couple that has certainly lasted the test of time, while also living with disabilities.

Sadly, Gita and Stephen’s love story is cut short by cancer. By words alone, one might conclude that Stephen isn’t emotionally processing the death of his wife. Stephen’s parents even question his understanding of Gita’s passing. However, Stephen’s eyes tell another story. They are wet with grief as he repeats “I miss Gita.”

Prior to Gita’s death, she receives a visit from Stephen. Gita seems to want more from Stephen as she attempts to engage him in comfortable conversation. At this point, viewers might question the depth of their relationship. However, Gita and Stephen’s relationship is a compelling example of compassionate love. When asked, Gita warmly shares about how she feels love from her spouse, “Its in the way he looks at me.” Relationship theorist, Elaine Hatfield, contend that we engage in both passionate and compassionate love, with the latter being what it takes for a marriage to last. Compassionate love between couples exists when two people’s lives are deeply entwined, while treating each other with affection and tenderness.  Passionate love is more amorous intense feeling, represented by the phase when a couple is hot for one another. When Gita speaks of Stephen, it there is tenderness and gratitude of the life they shared. Cancer alone separated these two from their commitment to each other.

What we learn: 

Learn to challenge your assumptions about who can be in intimate partnerships. Everyone is capable of love. Love conquers all.

If you haven’t already seen the film, I suggest you watch it.  Whether you have autism, know someone with autism, or are just looking for a good documentary, Autism In Love will move you.  At times it is sad, at other moments joyous.  But it is always thought provoking. Every human being is capable of bringing more love into their lives. Love is a verb. Practice Love.

Let’s discuss love, relationships, autism, and this film. What you do think? Tell your story in the discussion forum.

Watch Autism in Love on PBS at 

http://www.pbs.org/independentlens/films/autism-in-love/

Bio:

Jenny Palmiotto, Psy D., LMFT (#47573), is the Clinical Director and owner of The Family Guidance & Therapy Center of Southern California. She is also the creator and host of Love & Autism: A Conference at Heart. She is president and founder of the non-profit One Day Tomorrow. Jenny believes that love is the primary goal in life and that this doesn’t change with neurological differences associated with autism. Her clinical practice focuses on improving quality of life through meaningful and authentic interactions. Jenny is an outspoken advocate for change within the autism community. She challenges the dominant discourse about autism. Every person needs to feel valued and live a worthwhile life. Jenny is passionate about walking besides her client’s as they live fulfilling and productive lives. Visit www.familyguidanceandtherapy.com or www.loveandautism.com to connect with Jenny.

The post Autism In Love–What We Can Learn from this Film appeared first on Wrong Planet.

Yeah, pop culture gets it wrong sometimes. What else is new?

Oh yes, many of us are either unemployed or underemployed, friendless and/or alone. And that’s not really represented on screen, eg, “The Big Bang Theory”.

(As for sarcasm…yes, that’s hard for many Aspies to detect. So are lies to hurt others’ feelings. I’d say both of these are about as easy (difficult?) for any given Aspie to learn.)

Remember the first big black sitcom, “The Cosby Show”?

Now, “Good Times” did a fairer job of representing how many black families were actually making out. Inner-city housing project, welfare (including an older woman actually living on dog food), gangs, even violence. Fairer…and way more depressing. Some would say even prejudicial…people may have started to think (or think even more) that blacks are just poor folks who live off welfare and roam the streets in gangs.

Whereas “The Cosby Show” was full of upper-middle-class blacks whom you’d love to go to dinner or even on vacation with. Whatever its shortcomings — including, ahem, whitewashing many black people’s suffering — it helped the rest of us feel more comfortable around blacks.

Basically, people have a hard time understanding, in their heart of hearts, that bad things can happen to good people. So when they see people in low-level jobs, low-rent housing or the bad part of town, they wonder: How did they go wrong?

And hence, if John Q. Public now sees Aspies with college and graduate degrees behind the counter at McDonald’s (or unemployed altogether), staying home seven nights a week and living there all by themselves, he’s likely going to figure that Aspies are lazy ne’er-do-wells. Better to pave the way first with shows like “The Big Bang Theory”.

That’s really the main reason why Autism Speaks sucks. They portray us as burdens who will never get married or lead anything close to normal lives.

I get that they’re trying to show how individuals and families with autism suffer…but if they made a similar film about black people or GLBTs, they’d be boycotted en masse and their CEO would get fired.

Autism Speaks wants a cure…and I know there’s a divide among Aspies on that. It depends on whether you see autism as more like homosexuality or more like cerebral palsy.

Where their money goes, and their Aspie-free board, we all know about. Booo!

Speaking of money, that’s a big obstacle to getting an actual diagnosis. Health insurance costs, specialist bills and all that. Another obstacle — a much bigger one sometimes — is just knowing that it might apply to you. So sometimes self-diagnosis is vital.

About a dozen years ago, my then-girlfriend Emily Googled some of my more…interesting traits and came up with “Asperger Syndrome”. Then she told me about it and made me read articles and books on the subject.

By the time I did get diagnosed, several years after that (by which time we were married), it was anti-climactic. And many other Aspies have experienced it the same way. It’s not like, say, a diagnosis of cancer or diabetes.

One of the things my diagnosis helped me deal with was my lifelong problem of people complaining about how cold I was (in their perception). Knowing that AS makes it tough for us to (appropriately) express our emotions, now I’ve been able to both work on my tone and manner* and also explain my situation and ask for understanding.

So, thank you Cracked for spreading the word on that.

More broadly, yes indeed we do tend to focus on stuff neurotypicals (NTs) don’t, and so we interpret things very differently and express ourselves very differently. And yes, it helps to be very direct but not personally attack us for not reading your minds.

As in, if an Aspie you don’t particularly like asks you out: “Thank you for asking, but I’m not interested.”

Not: “Oh that’s so sweet of you, and I’d love to go, that’s great…I’m going to be out of town that weekend.”

(Or for that matter: “Oh sure I’d love to go. Let’s meet there at 7:30″ and then not show up…or call him at 7:00 to cancel, agree to a new time and date, cancel that on similar short notice and repeat until he gets the hint.)

Also not: “Not just no but hell no! I’m not that desperate.”

(Never mind Bigfoot. One of life’s great unsolved mysteries is why people — but especially women — have to swing to one extreme or the other, instead of just refusing in a matter-of-fact way.)

And, thank you very much for pointing out that we sometimes have problems at work. Sometimes our traits cause problems for people. Other times, people have a problem with the condition itself.

As I always advise people, at least in the U.S. if you do decide to disclose, only do so after you’ve gotten a firm job offer. At a minimum, it should state what your title will be, when you will start and what you will be paid, and it need to be in writing and signed. If the employer doesn’t do written offers, wait until you’re already on the job and have filled out your paperwork.

“What? Aren’t there laws to protect me?” Yes — exactly. Precisely because most U.S. employers are required to accommodate disabled employees — which can be an expensive proposition in money, time and even stomach lining — they have every incentive not to want to hire anyone who’s disabled. And if they find out you have a disability before finalizing your hire, they can turn you down and good luck proving it was because of your condition.

(This may also help explain why some blogs, websites and social media pages by Aspies are pseudonymous or anonymous.)

[*] ProTip: Sometimes people just want to “make conversation,” and they expect a response even if they didn’t literally ask you a question and even if you don’t care about what they’re talking about.

What do you think?

Jeff Deutsch

The post What’s the Deal With Us, Anyway? appeared first on Wrong Planet.