Wednesday, February 28, 2018

What Good Representation of Autistic Characters Looks Like, Part I: Interiority and Neurology

Elizabeth Bartmess
elizabethbartmess.com

This is a three-part series. Part II explores Diversity in Autistic Characteristics and Demographics. Part III explores Setting, Plot, and Character Growth.
"A lot of writers and actors seem to be able to get their heads around what autism basically is, in terms of language, sensory, and social communication difficulties. But then it’s as if they don’t know, or can’t extrapolate to, the full range of experiences that autistic people actually live. That things have happened to us, and things have happened in certain ways for us all our lives, and those things have had consequences for who we become and who we are....[T]he autistic characters [readers and viewers] are used to seeing have no depth of experience. They are people without history." —Chavisory, at Chavisory's Notebook
This series is about what autistic characters look like when they're written well, when they have the depth of experience referenced in the above quote. I've included examples from books and short stories, mainly middle grade and young adult books and adult science fiction and fantasy, where I've found the best representation.

Today, I'll talk about interiority and neurology: how autistic people are people with inner experiences who do things for reasons, with those reasons influenced by common aspects of our neurologies. I'll give examples of good portrayals, and I'll talk about common consequences of having these kinds of experiences, and how they shape who we are.

Tomorrow in Part II, I'll talk about variation in autistic traits and in demographic characteristics, how others respond to us based on their perceptions and beliefs, and how that shapes us, along with examples of good portrayals. I'll also talk briefly about setting, plot, and character growth, and why they're relevant to good representation.

On Friday in Part III, I'll wrap things up and add some links for writers along with a list of some real-life things often missing from fiction. I'll also list all the books and short stories I've mentioned, with content warnings and links to reviews.

Although I've focused on autistic characters, I think much of this also applies to other disabled people and characters, particularly "autistic cousins": people who share significant life experiences with autistic people due to hydrocephalus, cerebral palsy, ADHD, PTSD/CPTSD, or something else. When I use the term neurotypical in this series, I'm using it to mean, loosely, "people who are neither autistic nor autistic cousins." Because I've focused on stories with autistic characters, I often wind up contrasting "autistic people" with "neurotypical people," but I don't mean that to suggest that there are no other people in the world.

Interiority: People With Inner Experiences Who Do Things For Reasons

Like all people, autistic people are people with inner experiences who do things for reasons. We differ neurologically from neurotypical people in various ways, including sensory perception, language and speech, social abilities and skills, and ability to take intense enjoyment in specific interests, and a variety of other things. We may also have co-conditions that aren't part of autism but are more common in autistic people, like depression or OCD.

Our neurological differences mean that our experiences can differ from neurotypical people's experiences, in significant ways. We might look like we're in the same situation as a neurotypical person, yet the situation can be different for us—and our actions need to be responses to the situations we're actually in.

When others don't understand our experiences and don't understand how our actions are meaningful responses to them, they may think our actions don't make sense, and try to control them in ways that are harmful to us. That changes the situations we're in, too.

These experiences build up over our lifetimes, and when we can, we develop strategies—sometimes quite effortfully—for coping with and influencing situations and others' responses to our actions.

Bad representation in fiction upholds the idea that our actions are "behaviors" without reasons or causes, and doesn't take into account that we change in response to our experiences. Good representation portrays autistic characters' experiences and actions as comprehensible, often through narration or (if the autistic character is not the viewpoint character) someone else's awareness of our experiences and the reasons for our actions—which can include our expectations and skills learned from past situations. Showing us as comprehensible helps neurotypical people understand autistic people better, and—importantly—lets autistic people see themselves understood and reflected, something that's often missing from real life and is extremely satisfying to encounter, whether in real life or in fiction.

While reading this, keep in mind that while autistic people have neurological differences from neurotypical people, we're not made up of neurological differences; we're full people whose experiences often differ from neurotypical people's, and whose strategies for living in the world have to take our differences into account.

Sensory Differences

Sensory differences can make the world more painful; they can also make some sensory experiences exceptionally meaningful and rewarding. Often other people don't understand the intensity of these experiences or how they affect us.

[image: The book You Look Different in
Real Life, with a black background, white
block text reading "You Look Different"
over blue script text reading "in real life"
over an illustration of four teens sitting on
a gray wall, with a hoodie-wearing teen
standing in front, with one arm raised.]
Many stories show our experiences of sensory overload, and how that leads to our responses. In You Look Different in Real Life, a group of teenagers are in a busy city looking for one character's missing mother. The autistic character, Rory, is undergoing increasing sensory overload, and her experiences are clearly shown through her body language: when a car honks, she jumps, freezes, and then breathes in slowly to get herself under control; she winces when people shout, when a baby cries, when dogs bark, and finally has a meltdown in response to sirens and kids shouting. (Note that while her breathing in slowly is a strategy, her meltdown is not. Meltdowns aren't strategies; they're involuntary responses that happen when all our other strategies for managing intolerable situations aren't enough.)

In The Someday Birds, Charlie has an overly intense sense of smell. He's on a cross-country road trip with family, and his siblings have adopted a dog who's packed into the car with them. Charlie describes his experience evocatively: "[The dog] started out smelling like rotting fish. Now he smells like rotting fish someone left in a public porta potty overnight. I am gagging so bad, I'm riding with my head out the window" (location 1167). Other stories that show sensory sensitivities particularly well include M is for Autism, The State of Grace, and Water Bound.

Many autistic people take special joy in particular sensory experiences, including stimming: forms of fidgeting like hand-flapping, rocking, leg-jiggling, which can help regulate sensory overload, lower anxiety, and increase concentration. In Water Bound, Rikki stims for enjoyment by using her magical ability to manipulate water. She also immerses herself in water's sensory qualities to calm herself; her relaxation and intense enjoyment are vividly described, as is her love interest's enjoyment when he psychically shares her sensory experiences. In M in the Middle, M's teacher shows her Van Gogh's paintings Sunflowers and Starry Night:
"And I was struck. Just like being love struck. I could feel myself slipping...disappearing, sinking into these orange colours and fragile textures....Little electric explosions fire off all round my body. It's like nothing I'd ever seen before and my eyes were sharpened!" (211-212).
Some stories show characters using stimming as a strategy to help self-regulate sensory overload or manage distress. In On the Edge of Gone, Denise is trying to get her family onto a generation ship after an apocalyptic meteor hits the Earth, and is overwhelmed from multiple stressful situations:
"I'm rocking, I realize....moving like this helps keep the thoughts at bay, lets me focus on the shifting, roiling pressure and relief, like that of shrugging into a soft robe after coming inside from the rain, or turning down the volume after it's been screeching in my ears for hours" (356). 
Some other stories with relevant stimming-as-coping-strategy scenes include Failure to Communicate and Queens of Geek.

All these stories show the autistic characters' sensory experiences and reasons for actions, either through narration by the characters themselves or evocative descriptions from someone who knows them well.

Language and Speech Differences

Autistic people can have various language and speech differences, including ongoing or intermittent difficulty or inability to speak, using speech in different ways, difficulty with auditory processing, and a preference for text over speech.

In "Difference of Opinion," Keiya, a janitor and a former anti-eugenics activist, uses a tablet to communicate, but is reluctant to communicate at all, both because it's difficult to organize her thoughts and because she's had her past work co-opted for non-disabled people's inspiration and edification. In "Iron Aria," the protagonist Kyru's difficulty with expressive speech is described in sensory, immediate terms: "The words clink and scrape, wrong angles and too loud against his teeth." In A Wizard Alone (New Millennium Edition), Darryl needs extra time to compose most spoken sentences; when the protagonist, Kit, takes on some of Darryl's characteristics as a result of magic, he has even more difficulty speaking, because he has Darryl's difficulties with speech but not Darryl's strategies for managing it. In Experimental Film, the autistic protagonist Lois's also-autistic son Clark uses echolalia to communicate: he "speaks mainly in echolalia; haphazardly grafting great chunks of memorized dialogue from movies, cartoons, commercials, and songs together to get a point across" (locations 266-267). In An Unkindness of Ghosts, Aster learned to speak late and speaks pedantically and precisely as an adult; she sometimes has difficulty speaking, and uses echolalia to help prompt herself back into speech. Many other stories show or reference ongoing or episodic speech difficulties or differences, including "Geometries of Belonging," "Grandmother-nai-Leylit's Cloth of Winds," Al Capone Does My Shirts, M in the Middle, "They Jump Through Fires," A Wizard Alone (New Millennium Edition), Failure to Communicate, and The Real Boy.

The State of Grace shows auditory processing difficulties visually on the page, during a date at a sensorily overloading bowling alley:
"I can't hear very well and now my brain's doing that thing it does where it sort of goes on a
delay
so
when
someone
speaks
I
watch their mouth move but the processor takes a moment to translate the words and by the time I've caught what they mean they've started to say something else." (127-128). 
Aster from An Unkindness of Ghosts has similar intermittent auditory processing problems.

Multiple stories reflect a common real-world autistic preference for text over speech. In Unauthorized Access, Aedo notes that typing would give her:
"a chance to get all the information in the right order instead of just blurting it out and hoping the recipient could extract the meaning from all the noise....If she sat down and thought through the sentences, she wasn’t talking fast enough; if she talked fast enough, her words were a mess. She was so much more comfortable in text, where latency was fine." 
The autistic protagonists in Queens of Geek and A Boy Called Bat share this preference.

These stories use various techniques to show characters' interior experiences and the reasons their speech and comprehension differ, including direct explanation by the protagonist, other characters' observations, and the actual appearance of text on the page.

Social Skills and Abilities

Autistic people often have difficulty performing social interactions in ways expected of us. In addition to language and speech difficulties, we may be unable to get adequate information about what other people mean or want, may not know what responses are expected, or may be unable to enact those responses. Despite this, we can work quite hard to learn them.

In The Real Boy, Oscar, a young boy who's learned to interpret the nonverbal behavior and words of the people he lives with, has difficulty understanding people he knows less well:
"They said words they did not mean, and their conversations seemed to follow all kinds of rules–rules that no one had ever explained to Oscar. And if that weren’t enough, people talked in other ways, too, ways that had nothing to do with the things coming out of their mouths" (31). 
This description makes his difficulty enacting socially expected responses completely comprehensible. Other stories that show similar issues: An Unkindness of Ghosts, The State of Grace, On the Edge of Gone. A Desperate Fortune, Harmonic Feedback, and Rogue reference extensive past support from family members in learning to interpret and respond to social situations, and in Failure to Communicate the protagonist has learned on her own through intensive observation.

Even when we do know what responses others expect from us, performing them can be intensely draining. Good portrayals acknowledge this cost. In The State of Grace, Grace describes the burden this imposes:
"[M]y head is full of all the things I have to remember when I'm being a person every day: don't be rude, don't stare, don't look blankly into space when you're not thinking anything, shut down the noises of everything talking, concentrate, hold it together, don't have a meltdown.…Oh God" (101-102). 
Eye contact is a particular point of contention, because it's often uncomfortable and uninformative. In On the Edge of Gone, Denise's love interest asks whether eye contact hurts her. She responds:
"'Eye contact? No. Maybe it hurts for some people, but not for me. It's...' I've tried for years to put it into words. All the things I want to compare it to—music that's too loud, flavor that's too strong, images that flash too quickly—are different for other people too, so it never feels quite right....'I can do it for, like, half a second. Anything longer is just too much. Too intense. It scrambles my brain.' It's intimate, I think but don't say aloud" (232). 
In A Rational Arrangement and A Boy Called Bat both autistic protagonists note that the information others expect them to get from eye contact simply isn't there. Other stories: M is for Autism, How to Become a Robot in 12 Easy Steps, Anything But Typical.

Although we're stereotyped as lacking empathy, many autistic people describe high levels of empathy, though often difficulty figuring out how other people want us to express it. In A Boy Called Bat, Bat wants to do something kind for his sister Janie, so he gives a pet baby skunk Janie's favorite pajama top so the skunk will develop a bond with her; when this upsets her, he suggests a way to make her feel better. In Rogue, Kiara uses her skills with video editing and setting scenes to music to evoke in her mother the empathy Kiara feels for her friend Chad, who has gone through a particularly devastating family situation. Other stories with good portrayals of empathy include Queens of Geek, Failure to Communicate, A Wizard Alone (New Millennium Edition), and A Desperate Fortune.

Sometimes, we develop unusual social strengths due to workarounds. We frequently interact with people whose communication is not intuitive to us, and consciously learn skills for it. Several speculative fiction stories extend this, showing an autistic character as the first person to figure out how an alien species communicates ("Touch of Tides," "Becoming," and Failure to Communicate).

In these stories, we see characters' social difficulties, the reasons for those difficulties, their consequences, and the skills they develop—as well as the effort that goes into learning and enacting those skills. When this is shown on the page, our social miscommunications are more comprehensible to neurotypical readers, something especially important in a real-world context where our social difficulties are sometimes misinterpreted as being uncooperative or unempathic.

Special Interests

Many autistic people derive intense enjoyment, and sometimes other benefits, from special interests in particular topics. These provide fun and respite in an often-unfriendly world, although neurotypical people don't always understand the extent to which they're important and valuable, and may try to take them away from us.

In Harmonic Feedback, Drea's special interest is sound design. She becomes absorbed in sounds and ideas when making music with her friends:
"My fingertips buzzed with anticipation, and I heard a billion different guitar melodies over the top....Every note made me shiver, each one building into something even more amazing...It tore at my gut and haunted my mind until all I wanted to do was get lost in it for hours" (110-111). 
In Al Capone Does My Shirts, Moose's sister Natalie has a collection of buttons which she has memorized and loves to arrange; when a school takes them away from her, it's extremely upsetting to her. In The State of Grace, "You Have to Follow the Rules," and Queens of Geek, characters' special interests in real and fictional fandoms are fun, rewarding, and social.

In some cases, special interests help us make sense of the world. In Rogue, Kiara uses her special interest in the X-Men to help her understand other people, by mapping people and events onto ones she's read about. In You Look Different in Real Life, Rory explains why she finds Tudor-era history so compelling:
“Because it’s full of characters who are more interesting than the ones in any fiction book I’ve read, except these were real people. The more I learn about them, the more I learn about people in general” (109). 
In "Difference of Opinion," the protagonist, Keiya, frequently references relevant lyrics from her favorite singer Nash, using them to characterize situations and to help cope.

Some special interests can facilitate a career, when economically valued and when we have the other skills or support needed to develop them. In "The Scrape of Tooth and Bone," Lillian uses her robotics skills to maintain robots used on fossil excavations; in A Desperate Fortune, the protagonist, Sara, works as a code-breaker; in This Alien Shore, Masada is an expert programmer, and his wife (also autistic) was a musician; and in Experimental Film Lois previously worked as a film critic and teacher.

The stories I've included for this series have many other examples of special interests, including birds (The Someday Birds), writing (Anything But Typical), rocks ("Inappropriate Behavior"), herbs (The Real Boy), and magic ("Geometries of Belonging"); in "Difference of Opinion" the protagonist has multiple special interests, including the fictional singer Nash and polar coordinates.

By showing what special interests do for us, good representation helps show how our interests are reasonable and valuable. It's important to note, though, that special interests don't have to lead to a career or social connections to have value—any more than hobbies do.

Other Common Neurological Differences

Earlier, I talked about sensory, language, and social differences, plus skills and special interests. Autistic people have many other common neurological differences, as well as co-occurring neurological conditions; often, these are underrecognized in real life and underrepresented in fiction.

Executive function refers to the many abilities needed for planning and carrying out tasks. This can include many daily life activities that neurotypical people have relatively little difficulty with, like remembering what you're doing, changing from one task to another, or keeping your space clean. I've only found a couple instances of executive function difficulties in stories with good representation: In "Inappropriate Behavior," Annie attempts to alert her therapist to an emergency situation; she has difficulty with working memory, and when he repeatedly interrupts her, she's unable to remember it long enough to keep bringing it up. In The State of Grace, Grace can't keep her room clean, to the point that the carpet can't be seen. When her grandmother helps clean out her room, they throw away trash bags' worth of junk.

Executive dysfunction is valuable to portray because it's often misunderstood as laziness or willfulness, rather than an inability that's intensely frustrating to us—a common misconception that results in counterproductive demands that we "just do" things that are very effortful or impossible.

Change is especially hard; routines and structures help. Change disrupts the structure and routines that help us manage executive dysfunction, sensory overload, and stress and anxiety. In A Wizard Alone (New Millennium Edition), a character notes that structure is important because it helps autistic people manage the pressure and intensity of daily life. In M is for Autism, M describes what happens when her timetable for the day suddenly changes: "A vast, scary nothingness is opening up ahead of me which I cannot measure or feel, like other people seem to" (63). It's valuable to portray why change is hard and how routines and structures help us, because in real life they are often treated as irrelevant and counterproductive attachments that we need to be broken of—rather than the coping skills that they actually are.

Motor difficulties are common in autistic people. These include difficulty initiating, planning, and coordinating movements, and difficulty imitating others' movements. In Failure to Communicate, the protagonist has both gross motor issues and fine motor issues; she can't tie a knot, has difficulty navigating uneven ground, and has to work very hard to learn the complex system of bows used by the culture she's being a diplomat for. The autistic character in "Geometries of Belonging" often falls and breaks things. In "Difference of Opinion," there's a toe-walking scene with socially trenchant commentary. Motor difficulties are also briefly referenced in Blind Lake, Al Capone Does My Shirts, A Wizard Alone (New Millennium Edition), and A Boy Called Bat, though they don't play a role in the story. Showing that these are neurological differences related to autism, rather than carelessness or laziness, is important.

Other neurological differences: The State of Grace references prosopagnosia (difficulty recognizing faces) and sleep dysregulation. Failure to Communicate and "They Jump Through Fires" both portray grieving in ways that don't necessarily match what's expected of us. The protagonist in Failure to Communicate has difficulty remembering to eat and eating enough, causing the captain of her ship to explicitly assign people to make sure she at least eats protein bars. A Wizard Alone (New Millennium Edition) references intense emotions, and hyperfocus and burnout are both important to the storyline. On the Edge of Gone and "Difference of Opinion" both show self-injury as a consequence of severe stress.

There are many other autistic characteristics I haven't (yet) found good representation of, and I'll mention some on Friday.

Co-Conditions: Various neurological and psychiatric conditions are more likely in autistic people, such as synesthesia ("Touch of Tides," "Becoming," Failure to Communicate), OCD (The Someday Birds), anxiety (vividly described in both Queens of Geek and M is for Autism), depression (Experimental Film, "How to Become a Robot in 12 Easy Steps"), and ADHD (referenced in Harmonic Feedback). Representing these is valuable both because it reflects real life and because autism is commonly overlooked in favor of other conditions by healthcare providers (though the reverse sometimes happens, too). These aren't the only common co-conditions, and I'll mention some of these on Friday as well.

Intellectual disability is common in real life, though rarer in good representation. I could not find good representation with explicitly intellectually disabled autistic characters, although there are several characters who may be, including Natalie from Al Capone Does My Shirts, Kami from "Grandmother-nai-Leylit's Cloth of Winds," and Clark from Experimental Film (who his mother Lois mentions can't be assessed because he's not currently able to take standardized tests). Good representation with intellectually disabled characters is important because in real life, intellectually disabled people's experiences are often discounted by other people, despite being as real and important as everyone else's experiences.

Conclusion, And a Note About Voice and Detail

Today I've talked about how good representation portrays our interiority, including how our experiences influence our actions, and how those experiences build up over time and affect who we are and how we approach situations.

Many of these stories are narrated in first person, in realistic voices. The characters primarily describe their experiences rather than describing themselves as they would be seen through a neurotypical person's eyes. This helps avoid the phenomenon where characters perform autism for an assumed-neurotypical audience, whether through a narrative style that focuses the audience on the character's otherness at the expense of the story or by being turned into a self-narrating zoo exhibit. It's realistic, and it helps autistic readers connect with the characters, too.

Often stories with good representation do include more detail when describing autistic characters' experiences and actions than when describing neurotypical characters' experiences and actions. This helps neurotypical people understand us better; it also helps build autistic readers' trust and let us see ourselves reflected and understood. In an ideal world, we wouldn't need any extra detail, because autistic people would already be understood, and we'd be able to see ourselves reflected in real life. But we don't live in that ideal world; we live in this one.

An important caveat: in real life, giving this level of detail is effortful and sometimes impossible. We might sometimes decide to do so anyway, but we shouldn't be required to justify our actions, disclose very personal details, and be extremely skilled at explanation to receive support and understanding.

In Part II, I'll talk about how autistic people vary both in autistic traits and demographic characteristics, how other people respond to us, and how that affects us. In Part III, I'll talk briefly about how everything I've discussed relates to setting, plot, and character growth. I'll also give some links for writers, a list of some real-life things often missing from fiction, and a list of books and short stories I've mentioned.

Monday, February 26, 2018

Why Is the Autistic Unemployment Rate So High?

Office
Photo © Terry Chay | Flickr/Creative Commons
[image: A colorful office workstation with two large computer monitors.]
Maxfield Sparrow
unstrangemind.com

In the United States, thirty-five percent of Autistic eighteen-year-olds go to college. Of those American Autistics with university diplomas, only 15 percent are employed. This 85 percent unemployment rate (among college-educated Autistic adults) is massive—the general population’s unemployment rate (at all education levels) is only 4.5 percent.

There are some obvious reasons for this disparity. Just as with all Disabled people, workplace understanding and accommodations are a huge reason why Autistic people have such a hard time finding and keeping employment. Making it past an interview can be an insurmountable hurdle for many of us. While organizations and employer programs are popping up to help Autistic adults find and keep employment, with an estimated 50,000 new Autists entering the workplace every year, the few programs that exist cannot possibly keep up with the demand.

What many don’t realize is that the Autistic unemployment rate is higher than the unemployment rate for all disabled Americans in general (disabled people comprise about 20% of the population and have an unemployment rate of 10.5%) and higher than the unemployment rate for non-Autistic Americans with developmental disabilities (people with intellectual disabilities have an unemployment rate around 21%.)

Aren’t There So Many Unemployed Autistic People Because of Those With Severe
Disabilities?

In case you aren’t familiar with unemployment terminology, I should note that these unemployment rates for disabled Americans do not reflect whether some of us are too disabled to work at all. By definition, an unemployment rate only counts those who are ready to work and actively seeking employment. The Census Bureau divides the adult population into various groups, and people of working age are either counted as being in the workforce or not. Someone who is not in the workforce is not only not working but not even looking for work. The unemployment rate for any group of people—whether Autistic, Disabled, or the general population—is the percentage of the workforce who are not employed. Those too disabled to work are not in the workforce to begin with.

This also means that those Autistics who have become discouraged by the difficulty in finding employment and have given up looking for a job are not counted in these unemployment figures. Autistics who are living in institutions such as jails or hospitals are also not being counted in the unemployment figures. A much higher percentage of all Autistic adults than that 85% unemployment rate are not working for a variety of reasons. Those adults who are not institutionalized and who are prepared to work and could be in the workforce but have given up are called “discouraged workers.”

In the United States, the estimated number of discouraged workers in the general population is 451,000. The CDC has estimated an autism prevalence of 1 in 68. If that proportion also applies to discouraged workers, that would mean 6,632 discouraged Autistic workers. I couldn’t find a statistic for how many of those discouraged workers are Disabled or Autistic, but the actual statistics are so horrifying I don’t really need to add discouraged workers to those numbers to convey the employment crisis Autistic adults are facing.

So Why Are So Many Autistic Adults Unemployed?

The unemployment rate for all Disabled people is 10.5%. That rate accounts for stigma, lack of understanding, lack of appropriate accommodations, internalized and external ableism, plus all the reasons that lead to the 4.5% unemployment rate in the general population. The unemployment rate for Disabled people with non-autistic developmental disabilities is roughly twice that, at 21%. That leaves another 64 percentage points unaccounted for when we are looking specifically at Autistic members of the workforce.

I’d like to try to connect the dots a little bit by talking about a few of the special issues Autistic people face when we can’t find and keep employment as well as factors that drive some Autistic people from the workforce, converting them to discouraged workers.

Unusual Stigma Pattern

All disabilities come with social stigma and presumptions of incompetence. Autism comes with a particularly unusual set of assumptions that leave the Autistic person pressed from both directions into a pinched space no one can actually live or work in. This twin set of oversimplifications about who and how Autistic people are may be one of the biggest barriers to employment we face.

Most people get their understanding of autism from television and the movies, so the average person “understands” autism through models like the counter of toothpicks and playing cards who is re-institutionalized because he can’t use a toaster safely. On the other end of the representation spectrum are the socially naive surgeons people tolerate because they’re so incredibly brilliant at saving lives. Actual Autistic adults seeking employment fall somewhere inbetween those two portrayals by an extremely wide margin, which means there’s no room for us.

People who think autism is Rain Man will not even consider hiring us, because being Autistic means we’re obviously incompetent. If they meet us and we do not come across as incompetent, we’re obviously lying about being Autistic—not something likely to make an employer interested in hiring us.

People who think autism is savant geniuses like Dr. Virginia Dixon from Grey’s Anatomy and Dr. Shaun Murphy from The Good Doctor don’t understand why we need accommodations if we’re so brilliant and accomplished. They are disappointed, or even angry, when they learn we’re bright and motivated but just regular people. (My apologies to you if you actually are a real-life brilliant Autistic superstar like Dr. Temple Grandin, whose work in animal husbandry and slaughterhouse design is accepted internationally as the game-changing genius work it truly is. The majority of us are not.)

The vast majority of Autistics in the workforce fall through this “crack” between too-low expectations and too-high demands and either get turned away from employment or offered underemployment positions that do not pay enough money to support us. If we do not disclose our autism, we are viewed as “weird” or even “creepy” by potential employers and co-workers who can see our differences but can’t understand what is behind them. If we do disclose our autism, we face the strangely-shaped stigma that comes from not being well understood by a population flooded with “autism awareness” campaigns that deliver little useful content that could lead to genuine autism acceptance.

“Falling Off The Cliff” of Low Expectations

When Autistic people reach age 21, they age out of most available services. Some people call this “falling off the cliff” because of the drastic change one day (a birthday) makes is as sudden as hiking along a trail only to step off the edge of a cliff. When that cliff comes, it hits hard, especially for those who were previously underestimated and thus not prepared for employment. I have watched schools and families underestimate Autistic young adults and actively steer them away from an employment path. When those young adults age out of the system, there is nothing available to correct the skewed trajectory they have ended up on.

What happens to those who fall off the cliff? Some never enter the workforce in the first place. Some try and end up gravely underemployed. Some end up as discouraged workers. Some end up institutionalized. Statistics tell us that many end up dead from suicide. A study of newly diagnosed adults with Asperger’s syndrome found that 66% had felt suicidal, and 35% had attempted suicide. Of course that doesn’t count the number who attempted suicide and succeeded—we just don’t have statistics for that. We don’t know how many lives have already been lost, many before even being identified as Autistic and being counted among the 85% of unemployed Autistics and unknown number of Autistic discouraged workers.

Multiple and Sometimes Conflicting Needs

Not only do Autistic workers and Autistic would-be workers face the struggle for acceptance and the struggle for accommodation, but Autistic people experience a higher-than-average rate of other issues that affect employability such as gender and sexual identity issues and other, co-occurring disabilities.

Autistic people are seven times more likely to be Transgender than the general population. Since the Transgender unemployment rate is three times the unemployment rate among the general population, the intersection of autism and gender identity issues is bound to be another aspect that explains the high rate of unemployment among Autistic people. Other marginalized gender and sexual identities experience high rates of workplace discrimination and poverty as well. These difficulties compound the employment struggles Autistic people already face.

As for other disabilities, nearly half of all Autistic people meet the criteria for anxiety disorders, between 10% and 33% of Autistic people qualified for the workforce have epilepsy, around 30% of Autistics also have obsessive-compulsive disorder, Autistic people experience at least double the amount of sleep disorders as the general population, and so on. There are other conditions that are not yet strongly documented in scientific literature but which the Autistic community has noticed appearing at a much increased rate among us, for example Ehlers-Danlos syndrome. Just as being multiply disabled presents extra challenges in education, it presents extra struggles in employment.

An example from my own life: in addition to being Autistic, I have other disabilities. Two of them have access needs that conflict with each other in ways that significantly narrow the pool of jobs I am capable of pursuing. I have a circadian rhythm disorder called N24 that requires me to have a great deal of sun exposure in order to maintain a schedule compatible with work. At the same time, I have Ehlers-Danlos Syndrome which significantly limits me physically, ruling out jobs like park ranger, groundskeeper, or construction worker. I am not physically capable of the heavy manual labor that comes with outdoor jobs but an indoor job makes it impossible for my brain to keep accurate time, sending me into a schedule more fit for living on Mars. I can’t keep a job when I keep falling asleep in the middle of a sentence at work!

Draconian and Discouraging Social Security Rules

To continue with my own situation, I realized I would have to “think outside the box” when it comes to employment, so I have been self-employed for the last several years, working on building up my own business. I have run into many other Autistic people who are pursuing or attempting to pursue the same course themselves.

The main ingredients to self-employment are possessing a strong skill that there is also a demand for and having sufficient support to develop that skill into marketable products and/or services. Some governments even offer support, such as Australia’s New Enterprise Incentive Scheme. Autistic self-employment can get pretty far outside the box. For example, Brad Fremmerlid assembles IKEA furniture for a fee. That’s a business so many people are eager and grateful for that it’s surprising it didn’t already exist.

In my own case, I’ve come up against all the difficulties of starting and running one’s own business—including the fact that my business is still not fully independently supporting me—and something even worse: Social Security rules. The Social Security Administration wants disabled people to work. Their rules for those who pursue traditional employment are generous and easy to work with. Since most jobs provide regular paychecks, a person’s Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) is reduced according to what their monthly income is. (I apologize for focusing on the U.S. here. I don’t have experience working in other countries.)

As a self-employed worker, my income is irregular. One month it can be very high and another month it can be very low. My business expenses are also variable and sometimes the highs and lows of expenses do not come in the same months as the highs and lows of income. After some wrestling over the royalties from my memoir, No You Don’t, the Social Security Administration (SSA) and I came to an agreement: I would file taxes every year and they would adjust my benefits check based on my tax return amount.

As it turns out, they weren’t able to stick to their side of the agreement. I had a phone interview with the SSA late last year in which they insisted that I had to pay them back for an overpayment due to my income being too high. I tried to talk about the plan we already had in place but they would have none of it. They docked my SSI check.

Now that I have filed taxes, I see that not only did they not overpay me at all, I had a business loss last year. My business expenses were slightly higher than my business income. So now I am struggling along on a diminished benefits check and the same uncertain, variable business income and expenses. One thing has changed: once again, I am wondering why I am doing this? Why am I working so hard to build a business only to have to pay the government and have zero profits to live on?

This is not just my story. I have heard similar versions of this from so many other Autistics trying to start or continue their own royalty-based business for their writing, art, music, etc. I am dangerously close to leaving the workforce and returning to the ranks of the discouraged workers. After all, why should I try if the government is just going to break its word to me, and come take away what little I have?

What Help Is Available?

If you’re still with me, you’re probably reeling from the bleak picture I’ve painted. Fortunately it’s not all so grim! First, an 85% unemployment rate means that 15% of Autistic workers are employed! Okay, that’s a horrible statistic, but those people who make up that 15% need us to remember them and support them. Many of them are just hanging on by a thread and could lose their job any day. Many of them are stressed to the edge of breaking. They need more accommodations and more understanding. While we need to work hard to improve life for the 85% who are not succeeding, we can’t forget to take care of that 15% who have jobs.

When it comes to self-employment, in addition to government programs to encourage small businesses and the assistance and mentorship of offices of Vocational Rehabilitation, you can check out this mini-guide written by a self-employed Autistic for other Autistic people who are considering self-employment: Self-Employed Aspie. Cynthia Kim has more than one iron in the fire, since she wrote this series before starting the company you are probably more familiar with, but she’s also the entrepreneur behind Stimtastic. Another popular article written by an Autistic for other Autistics is Silent Wave’s essay: Self-employment for people on the Asperger’s/autism spectrum.

There are a few companies out there attempting to match Autistic workers with understanding employers. A big complaint a lot of people have about these companies is how computer-focused they are. There is an assumption that all Autistic people are great with computers and should go into computer work for a living. This is untrue, and focusing only on computer work leaves a huge number of unemployed Autistics out in the cold.

On the other hand, many Autistic people actually are good with computers and attempts to help reduce our unemployment rate had to start somewhere. Matching Autistics up with computer jobs was easy, and so between stereotypes and the path of least resistance, this is what we have the most of right now. I suggest we thank those people who are working to offer us computer jobs and ask if they have anything else. I am grateful that these tech companies exist and I will do all I can to keep getting the word out to people who might want to start another business to help us: we need a wider variety of job types available to us, please!

With that said, here are some of the groups that I’m aware of. Some don’t immediately look like job-finding organizations but have indicated in interviews that they do this work. When in doubt, contact a group to see if and how they can help you. In no particular order:



Autism, Transmasculine Identity, and Invisibility

Transgender Pride flag
The Transgender Pride Flag
By SVG file Dlloyd based on Monica Helms design [Public domain], via Wikimedia Commons
[image: A flag with five horizontal stripes. The center stripe is white, flanked by two pink stripes,
then a light blue stripe at the top and the bottom.

Devin S. Turk
@sket141

Everyone in my life knows that I’m transgender. Comparatively, very few people know about another major part of me: that I’m autistic.

At age twenty-one, I’ve come to understand that many of my young adult years have centered around trying to bridge the gap between my two ways of being: The way that I present myself to the world, and the way that I perceive who I am. I imagine that someday, hopefully soon, those two components of my life won’t feel far apart. And hey, sharing this essay might even help.

I realized I was trans when I was fifteen, but just a year before had come a revelation of similar scale and importance to me; my diagnosis of Asperger’s syndrome (which is now referred to as Autism Spectrum Disorder.) I experience many symptoms or “traits” of ASD, and I won’t mention all of them here, but it’s worth saying that my traits are not obvious to the untrained eye. Underneath the mask, though, lies a deep unsureness of how to regulate social interaction. To cope, I copy, or “mirror” other people in order to appear more socially fluent and less awkward. And it works. Many people close to me might say that I “blend in” very well, in more ways than one.

Now that I’ve been on testosterone hormone replacement therapy for close to three years now, my voice is deeper, my jaw is squarer, and I even have a bit of facial hair. When I tell people that I was assigned the sex “female” at birth, they often say something to the effect of “I would have never guessed!” This is typically meant as a compliment, but to me, it feels patronizing.

In an eerily parallel way, people react very similarly when I disclose to them that I’m autistic. In both scenarios, the disbelief is caused by the preconceived notions of what it “looks like” to be transgender or autistic. I credit the testosterone as the reason I am not read as female, and to some degree, I credit my socialization as a reason I am not perceived as autistic.

Professionals who diagnose Autism Spectrum Disorder are, in general, proficient at recognizing autistic traits in males. After all, the original model for autism was based on studies of mostly young boys. Some doctors are still catching up to being able to recognize such traits in girls and women, but people are becoming increasingly aware that autism presents itself differently in girls than in boys. For example, autistic girls are more likely than boys to be masters of “social camouflage,” which masks their traits of ASD.

So, where do I fit into this framework as a transmasculine person? Yes, I identify as more male than female. However, I lived the first eighteen years of my life as a girl, and so I believe many of my ways of interacting with the world are byproducts of being socialized as female. But when I walk into my doctor’s office, they will likely overlook the significance of my history because they see that I now present as male, despite having a lot of learning experience in the world as a girl.

I’m the same degree of socially clumsy and unsure as when I was presenting as female, yet doctors who are new to my case and doctors who don’t know me well are less likely to agree with my diagnosis. Doctors will commonly overlook my noticeable lack of eye contact and my significant difficulties with Sensory Processing Disorder (which is a common co-occurring condition in autistic people) or severely under-appreciate just how utterly exhausting it is for me to engage with others. Maybe they don’t understand how much my executive dysfunction holds me back. Maybe they don’t believe me when I tell them that when I’m alone, I often flap my hands when I get excited as a means of expression, or that I rock back and forth when I’m focused on something. All of these experiences are very real to me, and yet they seem invisible to so many medical professionals, simply because I don’t outwardly appear to check all the boxes while I’m sitting across from them.

In addition to feeling unheard and unseen, my autistic traits are sometimes swept under the clinical rug and regarded as symptoms of conditions such as depression or severe social anxiety. I suppose it’s an easy enough mistake to make, but such a misunderstanding of my neurotype can lead to misdiagnosis, which could potentially then cause doctors to prescribe medicine and recommend treatments that may do more harm than good.

After receiving handfuls of labels from the DSM as well as literally dozens of unsuccessful psychiatric medications over the years, I’ve learned that much of the way I am is not something to be treated with various therapies and pills. This is not to say that autistic individuals cannot experience things like depression or anxiety which may be very much relieved via therapy and/or medication. I have simply realized that in my specific situation, the best route from here forward is perhaps to make peace with and embrace the qualities that set me apart from neurotypicals, or those who don’t experience neurological differences.

The intersection of being both autistic and transgender is more common than one might think. While the dialogue around autism and gender identity is expanding, I have a bit of trouble figuring out where I fit into the whole picture. So, I decided to do my own research, and while this subject is a fairly new field of study, I found some pretty astounding statistics:

In 2014, a U.S. study of 147 children (ages 6 to 18) diagnosed with ASD found that autistic participants were 7.59 times more likely to express gender variance than the comparison groups. Another study, conducted in the UK in 2015, involved 166 parents of teenagers with Gender Dysphoria (63% were assigned female-at-birth.) Based on parents’ report of their children on the Social Responsiveness Scale, the study found that 54% of the teenagers scored in the mild/moderate or severe clinical range for Autism.

The relationship has only begun to be explored in research in recent years, but I’ve come to realize that there are a lot of autistic trans people out there in the world. As someone who very much values human connection and simultaneously struggles with it, I have to say that looking at those figures provided me an amount of comfort. I discovered that there are a lot of people just like me.

Being autistic and being transgender certainly each has their own respective challenges, though one that they share is a lack of societal acceptance due to stigma. Many people still believe that who I am as a transmasculine person is inherently invalid, just like many other people still believe autism is some kind of tragedy that is to be cured. In contrast, I feel very strongly that who I am as a person is heavily dependent on both my trans and autistic identities, and that they are beautiful things. 

I would not be the person I am today if I did not have the incredible perspective that being transgender as well as being autistic has given me. My worldview has been altered by these two factors in particular in ways that I consider enlightening. Sure, I have tough days. But would I exchange all that I am in return for the promise of a simpler, more typical life? Most definitely not. Because after all, I’ve found that one of the best things about being dealt a different hand of cards is the unambiguous and fulfilling joy that is learning to accept oneself wholeheartedly.

Saturday, February 17, 2018

Mental Health and Autism: Why Acceptance Matters

Anxiety
Photo © Mariana Zanatta | Flickr/Creative Commons
[image: Hand-drawn black-and-white outlined block letters spelling "anxiety"
on a background of "anxiety" written repeatedly in black & filling all space.]
Christine Motokane
www.workingthedoubleshift.com

It is well known that individuals on the autism spectrum are likely to have co-occurring mental health issues such as depression and anxiety. However, mental health is a less-discussed topic surrounding autism, compared to behavior and social challenges, etc.

As an autistic young adult with anxiety,  I can give personal insight on this high prevalence. A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism.

Yet mental health, and having a positive relationship with an autistic identity, are not usual priorities for helping autistic people. And if mental health issues are mentioned with regards to autism, they are are addressed in a pathological way. In this post I am going to write about my experience as someone on the spectrum who lives with mental health issues.

I have written about my struggle with anxiety in an earlier post. However, in that post I talked about some of the symptoms of how my anxiety manifests. I have never written that extensively about the root cause of my mental turmoil being related to lack of acceptance of my being autistic. Although I come across as a "confident self advocate" when I speak about my life experiences, the truth is that I struggle with deep self-confidence issues, and sometimes actually doubt some of my own advice. There is a "monster voice" in my head that constantly tells me, "I am wrong," or that "I am not deserving of support," and other negative scripts. I constantly say, "I'm sorry" to my family or others whenever I feel that my autistic mind takes over. My monster voice is always constantly bringing me down by saying that I am not "entitled to my feelings because I am autistic," and battles with my positive voice or the voice of confidence. I am so hard on myself and I blame myself for all the challenges that life brings me.

Lately, I have been wondering: how did I become this way, or how did I develop such negative thinking which resembles mental self injury? I then realize that the negative scripts and inner anxiety that I developed in my head today were the result of years of growing up, and slowly realizing that disability is something that needed to be fixed. Unlike the children growing up today with the neurodiversity framework, I did not come of age at at time in which autistic advocates were respectfully regarded as the "true experts."

As much as I hate to blast some of my lovely support people like my therapist or my family members on this blog post, they unintentionally—through no fault of their own—contributed to my negative script that I have for myself. Before I go ahead and critique some of the interventions that I received, I want to be clear that I am thankful that I have gotten interventions that enabled me get to the point where I am today. The social skills, emotional and self-advocacy skills that I learned during my adolescence enabled me to be the strong advocate I am today. But for autism intervention, there is always room for improvement.

Throughout my school years, I was taught to camouflage my symptoms in order to blend in and function in the mainstream environment. This was reinforced through behavioral therapy and the school system. A few examples that I can remember include that I was pressured to join clubs, and also sit with a group of kids because that is how typical high schoolers socialized. I was discouraged from socializing with adults such as the other aides at school, or the computer teacher in middle school, because it wasn't considered appropriate. I was socialized to learn about  the fashion and other interests that teens through social groups that my behaviorist made (e.g. the "cool" or "not cool" chart) in an attempt were to make me "fit in" better.

All these experiences and others have taught me that I should camouflage and suppress my natural self because I should appear normal. Friends were chosen for me, because people wanted me to be more social. I went along with the recommendations of my support people and parents, and pretended to live as a neurotypical, because I thought they knew best. I tried all I could to suppress my natural way of being—at the expense of my self esteem, and acceptance of my unique neurology.

What the people who helped me didn't realize at the time were the future implications of my mental health as an autistic person. This was because their focus was on making me as self-sufficient and socially adjusted as possible, and by the time I reached adulthood nobody ever considered that what they were doing could unintentionally affect my self-identity and self esteem. But all my energy spent camouflaging myself in order to appear "normal" became mentally exhausting. I started second-guessing myself, and internally beating myself up, over minor social infractions. This is a big part of my anxiety in living as an autistic person.

My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people's mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people's insights, feelings, and desires into account, instead of dismissing them.

Acceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity, rather than a problem that needs to be fixed. Acceptance means helping to create a world where autistic people don't have to camouflage themselves as neurotypical. Acceptance also means giving supports and accommodations to autistic people of all abilities and support levels when it's asked for and needed. If the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems autistic people have can, in many cases, be lessened.

----

This article was originally published at redefiningnormalayoungwomansjourney.blogspot.com.

Thursday, February 15, 2018

Please Stand By Is Not Harmful to Autistic People; It's Just a Bad Movie

Poster for the movie Please Stand By
[image: Dakota Fanning, a white blonde
woman wearing an orange sweater and lots
of colorful lanyards, as the autistic
character Wendy in Please Stand By,]
Amanda Forest Vivian
adeepercountry.blogspot.com

I usually don’t watch movies about autism, but after being told that [TPGA editor] Shannon would make me a gimlet I dipped my toes into the horrible pool. My limply positive impression of the trailer was borne out by the movie: it doesn’t say anything bad about Autistic people, and the main character Wendy breaks some stereotypes. She is female, can’t live on her own but can talk, and isn’t a genius. I don’t think this movie will harm Autistic people, and I’m grateful for that.

However, it’s still a bad movie that has nothing going for it but a dog in a cute sweater. You can see a dog in a cute sweater on YouTube without having to watch someone pretend to be Autistic by yelling things like, “My mom is dead! That means she doesn’t feel anything anymore!”

Dakota Fanning’s performance was just awful. It came off like she and the director had never seen an Autistic person, but based on something they read they decided that to look like an Autistic person, you should just stand very still and look serious. Dakota didn’t stim or have any physical mannerisms that would have particularly made her look like an Autistic person; she just acted like a piece of cardboard and that was the whole performance. Actors who are playing developmentally disabled characters often get made fun of for acting overly emotional, childlike, or awkward in an attempt to come off as disabled—but at least they’re acting.

It was hard to relate to Wendy because of the performance, but the story was also very incoherent, both in terms of the situation the characters were in at the beginning, and the emotional development I guess they were supposed to have.

This review spoils some plot points, such as they are.

At the beginning of the movie, Wendy’s sister Audrey is making her live in a group home after their mother died. Wendy would prefer to live with Audrey’s family, but Audrey not only refuses, she won’t even bring her baby to meet Wendy. Audrey apparently thinks Wendy is dangerous, and there’s no good explanation given for that. Obviously it’s verboten to portray autism parents in a bad light, but it would make more sense if their mom had raised Audrey with a negative view of Wendy and the movie showed Audrey getting out from under that. Instead, we’re given the opposite impression—that the mom treated Wendy much better than Audrey does. It seems Audrey has a problem with Wendy for no reason, yet she’s supposed to be a sympathetic character.

Since this is the conflict at the beginning of the movie, you’d expect it to be addressed when Wendy runs away from her group home in San Francisco and travels to Los Angeles to deliver her submission to a Star Trek scriptwriting contest. You might think that making this journey would be challenging but empowering for Wendy and everyone would see her in a new light because they didn’t expect her to be able to do this.

But Wendy’s journey isn’t meaningful. The only reason it’s challenging is because a bunch of random obstacles get unnaturally placed in her way. These obstacles mostly fall into two categories:
  1. Almost everyone Wendy meets is mean to her. For example, two bus drivers ignore Wendy when she asks them a question; clerks and cashiers glare at her; and the one time she approaches a stranger and tries to make friends with them, she’s robbed.

    At one point she tries to buy candy at a gas station and the cashier tries to trick her into paying $18 for a $2 bag of candy. If you think about the fact that gas stations have security cameras and they have to count up the register at the end of the day, this is a really complicated way to get $16. It’s like the side characters are contractually obligated to drop what they’re doing and torment the poor disabled girl.
  2. Facts of the universe seem to be out to get Wendy as well. A holiday she forgot means she can’t send her submission by mail; she’s traveling with her dog but he’s not allowed on the bus; she doesn’t have enough money for a ticket after being robbed; and she is completely taken aback when she finds out about these things, even though she was waiting to buy the ticket for eleven hours.
Maybe we were supposed to think it was part of Wendy’s disability that she doesn’t anticipate these contingencies and has trouble adjusting to them when they happen. I would welcome seeing this in a movie, but if that was what they were going for, it wasn’t clear at all.

Instead, it comes off like Wendy (or the movie) doesn’t understand rules and considers them to be an affront. There’s a scene where Wendy passionately argues with a ticket agent that he should give her a $22 ticket for $7.22, because she really needs a ticket; when he doesn’t agree, she sneaks onto the bus. About ten minutes later, another scene happens with the same beats—Wendy tries to get someone to bend a rule for her, apparently thinking that she can sway him with an intense speech; the person doesn’t give in because he’s just doing his job; Wendy shrugs, defies the rule, and gets away with it. It seemed to me that these two scenes were intended to be the most empowering moments for Wendy.

The problem with this is glaring. Autistic people aren’t likely to go around trying to break rules all the time. That’s ... kind of our thing? Didn’t the movie try to hammer this very same fact into our heads by having Wendy write down rules about life in her notebook and wear days of the week outfits? Just a little while ago she had to convince herself it was okay not to shower every morning.

Sure, there are exceptions to every generalization about Autistic people, but let’s be real: the movie wasn’t trying to show a refreshingly un-stereotypical Autistic person who doesn’t care about rules and has an easy time disregarding them. They forgot.

Anyway, the only reason Wendy has a difficult journey is that nearly everyone she meets is awful, and nearly everything she’s doing is against a rule. These problems don’t happen because she’s Autistic, because she lives a sheltered life, or because her sister and staff underestimated her. Anyone would have trouble getting to LA if they brought a dog on a Megabus, got robbed, got … well, I don’t have time to list all the hardships that befall Wendy.

Since Wendy’s struggles aren’t caused by who she is, and they’re not challenging to her specifically because of who she is, they aren’t thematically meaningful and they don’t lead to character development. It is unclear what change the characters are supposed to have undergone by the end of the movie. It’s just bad.

At the end, I guess Audrey is supposed to have learned a lesson about Wendy. She now believes it’s okay for Wendy to meet and hold the baby. Scottie, Wendy’s vaguely defined support worker, has learned that she wasn’t engaged enough with Wendy. At least I think so? I’m just spitballing here.

(I won’t try to make sense of Wendy’s living situation or the services she receives. Her group home for Autistic young adults is called an “Assisted Living Facility”—a name that implies it’s for senior citizens—and Audrey must pay for it out of pocket. Also, Wendy is obviously conserved, but if you think about this for one second you’ll start trying to figure out when, why, how, and who; the conclusions you’ll come to are horrifying; and unbelievably, I think the writers didn’t think about it at all.)

It’s definitely a sign of progress that this movie exists. Like I said, it’s not harmful or insulting to Autistic people, just bad. Objectively, the most offensive thing is how Audrey is presented as a sympathetic character when some of her behavior is flat out evil—but her evilness is mostly due to “fridge horror,” which I think is due to lazy writing.

However, what stuck with me the most was all the mean strangers Wendy met. Sure, people can be jerks, but they were so dedicated about it. In my experience as a young white Autistic woman like Wendy, that just isn’t how people act in those situations. Most people have neither that kind of malice, nor that much time and energy to spare on making a stranger’s life miserable.

If I can make a huge generalization, I think most of the barriers disabled people face in everyday life are systemic, not personal. And when an individual poses a problem to another individual, it’s more often out of laziness or ignorance than it is out of sadism or hatred. Mostly, the universe is indifferent.

Even though I think the movie intended to show a positive message about Wendy’s resourcefulness and independence, they misstepped in the way they portrayed the world outside Wendy’s familiar bubble. In real life people can be helpful, uninterested, actively trying to make things worse for you, trying to help while doing the opposite, sympathetic to your problems but unable to fix them, able to help a little but not very much; and so on.

The thing is that you don’t always find the most helpful people in your biological family and/or care providers. You may find them at school or work, on the Internet, by the side of the road, or behind the ticket counter at a bus station. The same goes for where you find the least helpful people. A stranger may do you harm, but so might your family.

This is an important lesson for anyone, but especially for Autistic people, I think. While I attribute this to bad writing and not to intent, the movie gives the impression that if an Autistic person defies their family and care providers, they will be wandering around the world completely alone with everyone either hurting them, ignoring them, or too incompetent to help them (ask me about the hilarious car accident). Bizarrely, the only stranger Wendy makes a positive, touching connection with is a policeman—one of the characters more likely to be dangerous to her, if this journey were happening in real life.

Tuesday, February 13, 2018

Parents: Let's Talk About Grief and Disability

Spectrum Disordered
www.facebook.com/asdisordered

Let's talk about grief.

To be specific, let's talk about a specific way the term “grief” is used: as a suggested framework given to parents to process the news that their child has some type of disability.

I’ve encountered this outlook throughout my life. My parents, by well-meaning professionals, were set up to view my disability as a loss: I was not normal, and would have to fight against my deficits for my whole life. They would not know what my future looked like and could not plan. They should feel Very. Sad. About. This.

Having a grief mindset instilled into my parents was the single most devastating thing that has happened in my entire life. I learned very quickly that I was broken, and that there was something wrong with me. I learned very quickly—and at a very young age—that my parents would have preferred a version of me that did not have a disability, rather than the only version of me that will ever exist—the actual me. How could they not? I overheard countless conversations of how scared they were for me. How I wasn’t normal, and what they should do about that fact. How to fix me.

I’ve been actively involved in autism advocacy for just under 15 years, facilitating support groups, public speaking, ranting on the internet. You may be somewhat aware that the views of autistic adults don’t always align with the view of NT parents of autistic children (surprise). During those 15 years, I’ve also seen tremendous positive change in what people, including parents, believe about autism, but this “grief” crap JUST WON’T DIE. Several years ago I severed ties with an autism non-profit I was a founding member of. The reason? A disagreement about the value of parents “grieving” the autism diagnosis their children had received.

When this disagreement has come up, I almost always get the “parent card” thrown at me: I didn’t have kids, so I COULDN'T understand what it is like to “go through” the experience of parenting a child with a disability. I was told that parents need to “grieve.” That it is an important part of the process that allows parents to “heal.” That “if you have children, you will understand how scary it is to get ‘a diagnosis’.”

On January 12, 2018, my wife gave birth to our beautiful, amazing baby boy, our first child. I had no idea how quickly I would find myself confronting “grief.”

Our boy was born exactly one month before his due date. He was born just before 8:00 in the morning, and it was with indescribable joy that we saw him enter the world. Knowing that the lungs are the last organs to mature, we were overjoyed to hear him cry!

Our baby cried for about five seconds. Then he fell silent, as he stopped breathing.

I watched as the nurse steadily escalated breathing support for my son. I heard the anxiety in her voice as she called for another nurse to assist. I watched his color change. His lips turn blue. I watched muscles pull tight against his chest, but his chest would not compress.

Fear. Fear that resists description. Thick. Heavy. Numbing. Draining. I walked behind my son as he was wheeled into NICU, crying, wringing my hands, feeling helpless. Another family was waiting in reception adjacent to the NICU. I saw their face light up with smiles, then they saw my baby, then they saw me. Their smiles drained. They looked away, a momentary expression of horror crossing their faces. “Please don’t let that happen to us,” they had to be thinking.

In NICU, our baby was stabilized but still struggling. We were informed he needed to be transferred to a hospital across the state, and that a flight for life crew was coming to get him. Our boy was intubated and placed on a respirator. And, a mere few hours after giving birth, my wife was rush-discharged so she could sit on a jumpseat in a tiny airplane with our baby boy, who was covered in wires and alone in a plastic box on a gurney. We had not even had a chance to hold him.

Private flights are apparently how our little man rolls
[image: newborn infant in an incubator, barely visible behind tubes and wires,
inside a flight for life plane, with a medical attendant.]
His plane had no room for me. I had to drive seven hours to get to the hospital. I had been awake for 35 hours straight, and had 20 more before I would see sleep. It felt like everything in my body hurt, my blood, my teeth. Everything humming in pain.

This is the end of the bad stuff. Our baby’s vitals were great on the flight. Immediately after admittance on the receiving end, he was taken off a respirator and began only getting oxygen by CPAP. My wife texted me pictures of her finally holding her baby boy, thirteen hours after he was born. I cried in relief. By the time I arrived, he was taken off the CPAP was and just getting oxygen. The next day he was taken off of oxygen and breathing fully independently.

We had planned for a lot of things, but never this. Life was wonderful, we had our baby. We could hold our baby. Eventually we would leave the hospital and start our life as a family.

On the morning of the second day in NICU, we had the composure to finally discuss what had happened. My wife was not yet aware that our baby had stopped breathing. I told her about the walk down the hallway. Told her what I felt and feared. She told me the first 24 hours of our baby’s life was both the best and worst day of her life, all wrapped in one. We talked about how powerless we felt, how afraid, how unsure and helpless and paralyzed by the unknowns of what would happen and what the future looked like, if there was a future. It was awful.

The neonatal nurse practitioner walked in while we were discussing what had happened. Every day she works, she sees people processing these same experiences. She has had this discussion with thousands of people.

She told us we needed to grieve. Grieve to process what had happened. That our baby did not have a normal birth. That we needed to move through the stages of grief to acceptance. That this would help us.

I was dumbfounded. It was a surreal moment to process that I was indeed a parent, getting the advice I have been told for years I would only understand as a parent.

Bullshit! We have nothing to grieve, as we have lost nothing. The story of our baby entering the world contains an eventful day and the expectation of some epic medical bills. Telling us to grieve takes away our agency. We wanted a baby. We have an amazing baby. Sometimes babies enter the world this way. Nobody did anything to us or stole anything from us. And oh my goodness is our baby amazing! Our baby, a matter of weeks old, is already showing us he is a smartass. He’s going to run circles around us. Our baby will be equally amazing if he has atypical development. He probably will, born to an autistic dad and two older parents.

Home.
[image: Newborn baby on its belly, seen from above, lying on a
fuzzy mat on an even bigger fuzzy bear cushion.]
This experience isn’t grief. I’ve talked with thousands of parents of autistic children who are still processing what it means to have an autistic child. I hear expressions of fear. Their roadmap of expectations of what the future holds for their child has been taken away, replaced with uncertainty. Doubt. Worse case scenarios running wild. They experience the exact same types of emotions that we experienced in a very acute, very severe way on our baby’s first day in this world.

We are failing these parents by telling them to grieve. What we need to give these parents is empathy. Their fears need to be acknowledged. They need support to build a new roadmap to process their fears. To move to hope, understanding, and of course, acceptance.

Our autistic community has millions of people who have been through this process, and yet we continue to fail new parents, leaving them susceptible to subjecting their children to harmful sham treatments, to traumatic experiences, to quantifiable harm to their children that they love dearly—chasing that thing that they were told they lost, that thing that snake-oil salesman promise to retrieve—that unfortunate idea of normal.

We can do better.

Friday, February 9, 2018

Despite Best Efforts, the Same Old Autism Narrative Hampers The A Word

The Main Cast of The A Word
[image: A white British boy wearing headphones and looking to the side.
Behind him are grouped five white adults, one white teen girl, & a black woman]
Sarah Pripas Kapit
@SarahKapit

The most important thing to know about BBC’s drama The A Word is that it both is and is not a story about autism.

On a basic level, The A Word is very much an autism story. The show’s first season told the story of the Hughes family as their young son Joe (Max Vento) was diagnosed with autism. In the second season—the focus of my review—the family continues to navigate life.

Given this premise, it is remarkable how many of the show’s scenes have little or nothing to do with autism. The Hughes family, who live in rural Northern England, have a seemingly unending litany of interpersonal dramas: the marital strife, the conflict between parents and adult children, and other assorted relationship issues. Typically, these conflicts are exacerbated by the characters’ inability to be honest with one another. Although the show is titled The A Word, an equally apt title might be "Neurotypical People Are Bad Communicators."

While I admit that this particular style of family drama is not to my tastes, I appreciate that the show has chosen to include so many subplots not specifically related to Joe’s disability. After all, life doesn’t stop just because one of the children in the family is autistic. So in that regard the show’s willingness to explore other storylines is a strength.

But since my main concern is autistic representation, I’m going to be focusing on that in this review. That’s where the show falters. Although there are some nice elements, overall I found the show’s autistic representation wanting. There are a lot of missed opportunities. While I believe that the show’s producers attempted to present a more positive representation of autism, ultimately The A Word falls flat.

“I’m Autistic, I’m Autistic. Nobody Wants That.”

The first episode of season two opens with Joe repeating these alarming words. Unfortunately, that episode and the subsequent five episodes don’t really challenge this heartbreaking belief. Sure, it’s obvious that Joe’s family loves him deeply. But casual viewers are likely to walk away with the impression that everything would be better if he just weren’t autistic. That’s the great tragedy of the show.

And while this opening dialogue might suggest that the season will explore Joe’s feelings about his disability, unfortunately that isn’t the case. Joe himself often acts as a plot instigator rather than a character in his own right. Through nearly six hours of total screen time, we learn remarkably little about Joe’s own internal life. Even his love of classic rock music—one of Joe’s few characteristics that isn’t directly ripped out of the DSM—seems more like an excuse to play the show’s soundtrack than anything else.

If the show were really concerned with Joe as a character, his love of music would be explored further. How does music influence the way he sees the world? Does he have any interest in learning how to play an instrument? Why classic rock and not another genre? None of these questions are addressed.

Given the show’s many subplots, it is all the more jarring that Joe doesn’t have any stories of his own. I understand that Joe is a young child, so naturally he isn’t going to have the same kind of storyline as the adult characters. But it is profoundly disappointing that the show’s writers seem so uninterested in giving Joe anything of his own—whether that be a real hobby, a pet, or even, yes, a friend. (Surely there has to be another kid in North England who appreciates rock?) These are all things that shape the experiences of autistic children, but are nowhere to be found in The A Word. Given that, The A Word’s main autistic character can’t help but be a disappointment.

The Clich├ęs of Autism Parents

Most autism stories focus heavily on parent experiences, and The A Word is no exception. Joe’s parents Paul (Lee Ingleby) and Alison (Morven Christie) are prominently featured.

Paul and Alison have very different views of Joe’s disability, which frequently causes conflict to erupt between them. In a somewhat refreshing twist on stereotypical autism parent gender roles, Alison is more accepting of Joe than Paul. Although she isn’t always perfect, Alison at least tries to be positive. She forms a relationship with the mother of a young autistic man, and works to help teenaged Mark Berwick (Travis Smith, who is actually autistic) gain admission to university. She speaks frequently of Joe’s positive qualities.

Conversely, Paul is the closest thing this show has to a villain. He tries to get Joe into football (soccer) despite Joe’s obvious lack of interest. He forces Joe to stop rocking, physically manhandling his son in the process. And he constantly says ableist things about Joe. At one point, Paul says “I love Joe, but I hate his autism,” seemingly not recognizing the inherent contradiction to those words.

The show does attempt to demonstrate that some of Paul’s more egregious behavior is wrong, which I appreciate. But there are far too many ableist assumptions that go completely uncontested.

In fact, several different characters suggest that Joe is destined to be alone forever. This includes Joe’s older sister Rebecca (Molly Wright). Although Rebecca is generally portrayed as supportive, in the season’s final episode she laments, “one day, I will be the only person [Joe] has in the world.” Apparently neither Rebecca nor the show’s writer’s can conceive of Joe forming independent relationships outside of his birth family.

It also looks like The A Word is also pushing another harmful autism stereotype: that the stress of parenting an autistic child is so great that it pushes couples apart. At the end of the season, Paul packs his bag and prepares to leave the family. Although I’m of the opinion they’d all be better off without him, it’s still frustrating to see this same old story play out. Having an autistic child does not mean a trip to divorce court is inevitable.

How The Crotchety Grandpa Saves the Show

However, there is one saving grace in the show’s portrayal of family relationships: Maurice Scott, Alison’s father and Joe’s grandfather. Maurice is portrayed brilliantly by Christopher Eccelston (yes, the Doctor) and is absolutely the highlight of the entire show.

Maurice, the family patriarch, is more accepting of Joe than most other characters. Although their relationship isn’t a primary focus, there are several nice moments. In the show’s first episode, Maurice coaxes Joe down from the roof of his primary school—demonstrating an understanding of Joe’s differences that is sadly lacking throughout most of the show.

As a character, Maurice is crotchety, awkward, and hilarious. But beneath all of the grouchiness, he is revealed to be incredibly warm-hearted. I strongly suspect that the show’s writers intended to imply that Maurice is also autistic. Unfortunately, the show never spells it out explicitly. As a result, I fear most viewers won’t pick up on this rather interesting development.

This is a missed opportunity. Maurice proves that autistic people aren’t destined to remain alone forever. His main storyline revolves around his relationship with Louise Wilson (Pooky Quesnel). Although Maurice still grieves for his late wife, who died of cancer several years prior, he and Louise have obvious chemistry. Their budding romance faces a challenge when Louise too is diagnosed with cancer. Propelled by Eccelston’s outstanding performance, this is one of the more engaging storylines in the show.

If Maurice were acknowledged as an autistic adult, the show would go a long way towards dispelling some of the autism stereotypes it perpetuates elsewhere. In real life, it’s very common for adults to recognize that they are autistic only after a child or grandchild is diagnosed. Yet this experience is rarely portrayed on screen. I would love to see Maurice discover that he might be autistic in future seasons, but I fear that the show just isn’t interested in exploring that kind of story.

Locating Disability Politics on The A Word

While the show’s primary focus is family drama rather than larger disability politics, it inevitably takes a few forays into the social context of disability. Most notably, the show features a storyline about Joe’s school placement.

At the beginning of season two, Joe attends his local primary school, where he receives assistance from a paraprofessional. Yet he has struggles, and parents of other kids object to Joe’s presence at the school because they’re ableist jerks.

Alison and Paul struggle with how to deal with the situation, but ultimately decide to remove Joe from the integrated school and transfer to a Manchester school that has a specialized program for autistic children. The reason why they made the switch? “We realized we were getting more out of the idea of integration than he was.” Really?!

Although the show attempts to present a multi-faceted perspective, the clear implication that autistic kids do better in “special” programs is ableist and harmful to the goal of integrated education. The show doesn’t present the downsides of special education programs, namely that these programs oftentimes have subpar academic programs and focus more on student compliance than comprehensive education.

Since Joe’s new school is more than an hour away from the Hughes family home, they must now deal with a long commute. At one point, Alison and Joe even move into Alison’s brother’s apartment on a part-term basis. The show deftly demonstrates the ways in which the separation harms the family, including Alison and Paul’s marriage. But it stops short of recognizing the obvious conclusion: perhaps it would be better for the whole family if Joe could attend the school that’s in his very own neighborhood.

Overall, the show’s engagement with disability politics is seriously lacking. Yet I would be remiss if I failed to mention the fact that The A Word does have two developmentally disabled characters in supporting roles that are played by disabled actors. First, there’s Mark, who plays the drums and wants to attend university. Reading from his admissions essay, Mark delivers a moving speech about why he wants to go to university in an integrated setting. The scene is a definite highlight.

The other character of note is Ralph Wilson (Leon Harrop), Louise’s son who has Down Syndrome. Over the course of the season, Ralph gets a job at Maurice’s brewery, becomes angry when his mother tries to conceal her cancer diagnosis from him, and starts dating a girl who also has a developmental disability. He’s not defined by his disability—he’s just a young man living his life.

Overall, Mark and Ralph are good examples of disabled characters, albeit in supporting roles. Actually, the fact that the show is capable of this makes its treatment of Joe all the more disappointing. It’s obvious that the show is capable of doing better, so why does it resort to so many tiresome stereotypes?

My final verdict: The A Word has some redeeming moments. But overall it is entirely too reliant on harmful stereotypes. Many of these problems are fixable. However, the show’s writers and producers need to take a serious look at how they perceive autistic people and disability politics more generally. Until they do that—preferably consulting with autistic people ourselves—the show is probably just going to continue presenting a narrative we’ve seen many, many times before.