Building the Plane While We’re Flying It

Note: A version of this piece was originally published at Thinking Person’s Guide to Autism as a part of a series of post highlighting autism and accommodations during Autism Acceptance Month.

Three books are in the corner of a cubicle. The titles are "Neurotribes," "Rosemary," and "Loud Hands." Beside them, a color communication badge is attached to the cubicle wall. A stim toy and Einstein sticky notes are holding the books in place.

The statistics around autism and employment can be incredibly discouraging. Forty-two percent of autistic people in their twenties — people like me — are unemployed, even though only 26% of overall young disabled people are out of work. This might seem counter-intuitive. After all, if someone can do well in college or even graduate school, surely they should be able to do well once they join the workforce? Unfortunately, it doesn’t work that way.

Like many of my autistic peers, I have struggled to keep a job. I was fired from the first full-time job I ever had after just two weeks: While I had excellent credentials, including a graduate degree, I was told that I was a “bad cultural fit.” After discussion with some friends who had human resources experience, I learned what that expression was code for: I hadn’t done anything that violated company policy, but something about me was too strange. Something about me made other people uncomfortable.

The next year, I received my autism diagnosis.

Post-Americans with Disabilities Act (ADA), employers are required to provide “reasonable accommodations” to qualified job applicants and employees. These accommodations guidelines are fairly clear for many types of disabilities, for example, a blind person might need documents in large print, or Braille in order to read them.

Workplace accommodations are less straightforward for autistic people, because it’s hard to measure what our skills and deficits are, and those characteristics can vary so widely from person to person — or even from day to day. Some days, I’m on top of everything; Hyperfocus can make me incredibly efficient. Other days, my executive functioning is so bad that I have trouble leaving the house.

This kind of “functioning” variability isn’t unusual. Accommodating autism can take some really out-of-the-box thinking and flexibility. Unsurprisingly, this often does not go over very well for managers or organizations with entrenched expectations and methods. People don’t like being asked to change, especially when it isn’t clear that a specific change is going to be effective.

Sometimes, autistic differences can be a source of shared humor and camaraderie in the office. My tendency to take certain phrases or ideas too literally can be funny to me and my coworkers. Not every autistic trait is a deficit or a skill in the workplace. Sometimes they’re just a part of who I am, and my coworkers can appreciate that.

This comic portrays two people: A job interviewee and a potential employer. The potential employer says, in the first panel, "please, have a seat!" In the second panel, the job interviewee is holding the seat aloft. The interviewee says, "thank you."
I have a sense of humor about things.

Right now, I am fortunate to work at an organization with a disability rights and inclusion focus: the Association for University Centers on Disability, or AUCD. My supervisor, Dawn Rudolph, is willing to work closely with me to help me do my best. She describes the process of accommodating my autistic brain as, “building the plane as we’re flying it.” That is: I’m already at work. We’re here. Now the goal is to keep the plane in the air.

My accommodations require frequent adjustments. This can take a lot of patience. Many employers might wonder why to even bother. However, I bring a unique perspective and a depth of interest that only an autistic person can bring. I see things my coworkers don’t see. I have talents that reflect well on the organization as a whole. It’s not just good for me to be employed, it’s good for my employer too.

Sometimes, the plane gets very close to a crash landing. The weather can turn on a dime. It is neither straightforward nor easy. But it’s worth it.

For more on accommodating work for autistic people in an office environment, please check out this awesome video! Liz Weintraub, a long-time intellectual and developmental disability advocate interviews me about what kinds of accommodations I use at work and why employing disabled people is worth it.

Autistic Enough?

Two people point at a number that is either a six or a nine on the floor. One is saying it is a six and one is saying it is a nine.
Pop quiz: Which cartoon drawing lacks Theory of Mind?

For the past few days, I’ve been working my way through In a Different Key, a new book about the history of autism. There are many things wrong with In a Different Key. The Thinking Person’s Guide to Autism has been livetweeting a read-through, and I think they cover a lot of the ethical problems with the book – Justifying the murder of disabled kids and minimizing the problems with punishing autistic people with cattle prods and electric shocks is troubling, to say the least. I plan on writing more about that, and I encourage my peers to do the same. That’s not what I’m writing about today, though.

What I’m writing about today is much more personal: As an autistic person, I am tired of walking the impossible line between “too autistic” and “not autistic enough” to have a say in autism policy. I am tired of my peers having to walk that line. The fact of the matter is, there is no way for anyone to be sufficiently impaired but not too impaired to meet some so-called autism advocates’ made-up, arbitrary standards. We shouldn’t have to. I’m not like your child because no one is like your child. Your child is an individual. That doesn’t mean I don’t understand what being truly autistic is like. In a Different Key’s coverage of Ari Ne’eman, founder of the Autistic Self-Advocacy Network, is a prime example of this pernicious double standard.

Full disclosure: Ari Ne’eman is my friend. In my experience, Ari is warm, clever, and funny. He cares deeply about his work. This is a large part of why I find In a Different Key’s description of Ari utterly baffling. He is described as lacking empathy to a pathological degree. He feels very strongly about certain issues, of course. But who doesn’t? Do the Democrats and Republicans lack Theory of Mind when they clash in Congress? It’s an absurd double standard.

This unfairness is a feature of In A Different Key. The book’s treatment of Ari is a case study in how self-advocates are told that we are paradoxically too disabled and not disabled enough to have insight into own experiences.

Ne’eman, who even in college, was usually seen wearing a necktie and lugging around a briefcase, was diagnosed with Asperger’s at the age of twelve. He was sent for a while to a special school, which he disliked. He was reticent with reporters who asked about his past beyond that. In Troy, New York in 2013, he gave a typically vague answer to the question: “My experience growing up was similar to most autistic people,” he said. “We struggle socially. I had very strong interests in very particular topics.” The reporter seemed to take the cue. That was all Ne’eman wanted to say about the subject.

Ari is not obligated to demonstrate to strangers that he is autistic enough to meet their invented standards. The refusal to share the intimate details of how an impairment functions is not the same thing as that impairment not existing. To be blunt: You aren’t his family, you aren’t his friend, you aren’t his therapist or his doctor, and it’s none of your goddamn business. It’s an intensely personal question and you are not owed an answer. It takes a fairly warped sense of entitlement to declare yourself the Grand Poobah of what is “real” autism and what is not. And yet, it’s an astoundingly common attitude among non-disabled people.

I had my first interview with a newspaper last May. The reporter was looking for autistic adults to talk to about neurodiversity and autistic culture. One of the first questions she asked me was about ways that I am symptomatic or unusual. I was lucky in that some activist friends had prepped me on how to keep my privacy: “Pick something you do that is innocuous and sort of boring.” My go to these days is that I wear musician’s earplugs most places, as I have somewhat sensitive hearing. This isn’t a new kind of rudeness. Jim Sinclair described it in 1994: “We’re expected to speak only when spoken to by neurologically typical people, and only for the purpose of providing informative data for others’ purposes, like self-narrating zoo exhibits.”

I refuse to play the Misery Olympics. So do my fellow neurodiversity advocates. I’ve done things that were very challenging for my parents and sister. I’ve done things that I’m not proud of when having a meltdown. A lot of us have. I’m not going to tell those things to strangers who don’t give a damn about me so they can judge whether I meet the shifting goalposts of being autistic enough to have an opinion. The thing about the Misery Olympics is that nobody wins.

I Don’t Have Stories, I Have a Medical History

This is an image of Sara Luterman as a child. She is wearing a red sweater and leggings. She has brown hair and glasses. Sara is holding a basketball that is larger than her head. Four years ago, I was volunteering at the hydrocephalus center for a fairly famous hospital. I had been invited to sit in on an important meeting or procedure – I don’t actually remember which at this point. What I do remember is that I was going to be late. I remember the consuming sense of dread, rage and confusion increased with every passing minute I sat in my car. I couldn’t be late. I didn’t know how to be late. So I did the only thing that seemed sensible to me at the time: I turned the car around and went home. Then I didn’t speak to the doctor who had been kind enough to let me volunteer with him for a few months. I wasn’t trying to be rude. I just didn’t know what to say.

I have a better understanding of what happened now. Words like “meltdown,” “rigidity,” and “routine,” have entered my vocabulary. In most ways, an autism diagnosis has improved my life. I have a better understanding of why I feel, think and do certain things. As a result, I am better equipped to address life’s problems. If I feel ‘bad,’ I know what to do about it, or at least have some sensible guidelines. A friend is angry at me because I unintentionally said something offensive? I recognize where I have a limitation, which makes it a lot easier to talk the problem out. Difficulty falling asleep? A weighted blanket has me sleeping better than sleeping pills ever did. Do I feel anxious or distant? It might be a good time to pop in some earplugs and turn down the volume. Do I feel like the edges of the world are wobbling because of something that should be totally insignificant? Now I know why.

A friend who knew me before I was diagnosed once suggested that space aliens must have abducted me and replaced me with a better version of me in the year or so since then. I’m not offended; He’s right. I’m happier than I ever thought was possible because I have learned how to make myself happy. Even better, if I don’t know, I have a community of peers I can ask for advice. I had always assumed that my quirks and difficulties were some sort of singular, perverse strangeness that I hatched alone in the dark. It’s hard to express the amount of relief I feel knowing that when I have a problem, there is a community of people who will say, “yes, me too.”

The downside to all of this is that my childhood is now viewed almost exclusively through the lens of tragedy. I don’t get to have stories anymore. It all has to get wedged into a pathology framework. My tendency to wander away from softball games to find bits of grass that I found particularly interesting? That’s now, “absence of interest in peers.” That time in 7th grade when a boy asked me to the school dance and I didn’t understand that’s what he was doing until years later? That’s no longer the awkwardness of adolescence. It’s, “atypical or unsuccessful response to social overtures of others” and “deficits in understanding.” Stories my parents told at parties for years are now unbearably awkward. I don’t pick up on a lot of non-verbal cues, but it’s hard to miss the shame and guilt that creeps in halfway through what was once a humorous anecdote upon the realization that whatever happened was yet another unnoticed sign of my autism.

I don’t think my parents should feel guilty. I’m happy. I have a job I enjoy. I have a partner that I love very much and who loves me. I do want my stories back, though. Neurodiversity isn’t just about accepting that people have different kinds of brains. Neurodiversity is about embracing that people have different kinds of brains. Stories about my childhood are still stories about my childhood. My autism does not negate the validity or meaning of my experiences. It doesn’t matter if my childhood meets certain diagnostic criteria. It’s still a childhood like anyone else’s childhood. I want to have stories again, like anyone else.

Advice for Therapists from a Neurodiversity Advocate

Thanks to the success of Steve Silberman’s ‘Neurotribes,’ therapists and service providers have become aware of neurodiversity. On one hand, this is wonderful. A concept Autistic self-advocates have been celebrating for years has hit the mainstream. It seems that therapists and service providers are finally listening to autistic people speak. On the other hand, there seem to be many misunderstandings about what neurodiversity, and by extension allyship, entails. Therapy can only be enriched by neurodiversity, if therapists will let it.

A common misconception about neurodiversity is that we are pushing the idea that autism is not a disability. It’s true that in general, neurodiversity advocates believe that autism is not a ‘disorder.’ You’d be hard pressed to find advocates who don’t consider autism a disability, though. We know, through our lived experience, that autism is a disability. The world we live in was not built for us. Or at least if it had been built for us, it would involve a lot more trampolines.

The distinction people are making is between the medical model and social model of disability. The medical model of disability, for those who may be unfamiliar, puts an emphasis on a disability being something ‘wrong’ with a person. In that model, disability is something to be corrected. Disability itself is seen as a source of reduced quality of life. The social model of disability, on the other hand, focuses on negative attitudes and physical barriers imposed by society, rather than perceived “flaws” in the individual. Neurodiversity rejects the medical model. It does not reject the concept of disability or deny that impairments exist. The primary difference is how disability and impairments are considered and addressed.

Rather than treating autism as something that needs to be corrected, advocates want it to be seen as something to be accommodated, and that disability is largely situational. If someone is in a wheelchair, you can either focus on curing the reason they’re in the wheelchair and let them wait at the bottom of the stairs until you’re done, or you can build a ramp. Neurodiversity advocates want ramps for our brains. What exactly that looks like is still a work in progress, but I encourage professionals to embrace it. Work with us so we can live our best lives.

A white person with brown hair is sitting in a wheelchair at the bottom of a flight of stairs. The person is gesturing in frustration.
I’ll just wait here, then.

I encourage you to consider what the goal of therapy is. Is your therapy designed around compliance and getting an individual to desist from harmless differences like nonviolent stimming or not making eye contact? That’s in opposition to neurodiversity’s goal of making a wider range of behaviors acceptable. This is one of the many reasons neurodiversity advocates oppose applied behavior analysis, or ABA. Being more “normal” shouldn’t be a goal. This is true for a number of issues, not only disability. If a little boy likes wearing dresses and other children are jerks about it, that’s not his cross to bear. The problem is the bullies, not the little boy wearing a dress. People who object to someone fiddling with a toy or not responding immediately with an expected response should be more tolerant of difference. Unfortunately, there is no therapy to make non-disabled people approach people who are different with an open mind.

It’s pretty easy to tell if someone finds a therapy helpful or not, regardless of whether they are verbal. How is the person’s mood? Do they find therapy sessions distressing? If it’s the latter, maybe that kind of therapy isn’t the best fit. Being unable to speak and being unable to communicate at all are not the same thing. Listen to your clients, especially the ones who do not speak. They’re the ones who need you to listen the most.

So what kind of therapy is compatible with neurodiversity? The answer is surprisingly simple. Is your therapy designed to improve communication, reduce anxiety and/or redirect harmful behaviors?  That’s not in opposition to the neurodiversity paradigm at all. Neurodiversity does not mean that we want a hall pass to smash windows or bite our fingers until we bleed. It doesn’t mean that we are ignoring the reality of our lives. It doesn’t mean that those of us who are verbal and/or who need fewer supports aren’t thinking about our nonverbal peers. It means understanding, to paraphrase Martin Luther King Jr., that a riot is the language of the unheard. Listen to us. Please. This is an image of a rainbow-colored infinity sign. The sign is considered a symbol of the neurodiversity movement.

Bernie Sanders is Wrong About Roseburg

This is a screencap of Bernie Sanders speaking about the campus shooting in Oregon on MSNBC

This Tuesday, presidential candidate Bernie Sanders once again linked the recent mass shooting at Umqua Community College to mental illness. This wasn’t the first time Sanders has conflated the two issues and that makes me nervous. Mental health policy based on the assumption that mentally ill people are more likely to murder others is not only untrue, but heaps stigma onto an already vulnerable population.

The day of the massacre, Bernie Sanders appeared on MSNBC. One of the first policy positions he took on the subject was that people who are mentally ill should not be able to own guns. Personally, I don’t have any desire to own a gun, but it’s utterly fallacious to lump disabled people and violent criminals together without even a pause. In the same interview, Sanders went on to demand more accessible, affordable mental health care. As someone who uses mental health services, I know how difficult it is to get what you need when you need it and how prohibitively expensive the whole process can be. I’m all for more accessible, affordable health care in general. However, I am concerned about what Sanders means by “care and attention immediately” in the context of mental illness and homicide prevention.

This is an excerpt of a news article from the Rutland Herald that predates Bernie Sanders' campaign for the White House. The title reads, "Sanders Stands Firm on Guns."

Others have already written extensively about how mental health is being used as a scapegoat by the gun lobby. Sanders, a long-time supporter of gun rights, has bought into that lie. The facts are in: People with mental health problems are astronomically more likely to be victims of violent crimes than perpetrators. They are often the most vulnerable people in society: Homeless people, veterans and survivors of terrible trauma. Furthermore, banning mentally ill people from gun ownership is unlikely to even do very much to curb mass shootings. Only 3-5% of violent crimes in the United States are even committed by people with mental health problems.

The assumption that mental illness and violence are linked leads to policy decisions that punish people for being disabled. In 2013, the National Rifle Association backed a bill that increased the scope of involuntary treatment for people who are mentally ill. The euphemistically named Helping Families in Mental Health Crisis Act, better known as the Murphy Bill is moving through Congress again. The Murphy Bill cuts patient advocacy access and community programs while promoting institutionalization and forced treatment options. It also rolls back privacy rights for people diagnosed with mental health disorders.

I would like to encourage Sanders supporters to contribute to Kit Mead’s campaign to educate the senator about mental health and its lack of relevance to mass shootings. Participants are encouraged to contract Sanders through his social media accounts to try and educate him about the issues. I hope, given enough feedback from his supporters, that he reconsiders his stance. He hasn’t in the past, but perhaps a national stage and the accompanying pressure will be enough.

I don’t know that Senator Sanders supports legislation like the Murphy Bill. It’s unclear exactly what kind of action he would like to take in terms of mental health care. He is very vocal about expanding Medicare and Medicaid, which I wholeheartedly support. It’s possible his ideas on improved mental health care are policies that actually help disabled people, unlike what usually follows from the conflation of gun violence and mental illness. Given the context and history of his comments, however, I’m just not “feeling the Bern.”