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.”

What It’s Like to Be David

This is an image of a person holding a sign. Their face and legs are out of the frame. The sign reads, "Nothing About Us Without Us."
This is your intrepid author.

Last weekend, I protested an Autism Speaks rally at the National Mall. A handful of us, mostly Autistic, stood and watched as thousands of people went to raise money for the biggest autism organization in the United States. Upbeat music blared from an enormous stage. Cheerful college students and families with young children packed the sidewalks, despite the dismal weather. Some people wore homemade t-shirts and hoodies with their autistic relatives’ smiling faces emblazoned across the front. These people are, for the most part, good people. They care about their families. They care about their communities. They love the autistic people in their lives and want to do what they can to make their children’s lives a little easier. Why would anyone want to protest that?

A long line of Autism Speaks supporters walk around the National Mall. It is cloudy and the Washington Monument is visible in the background.
These people are good people. The organization they’re walking for? Not so much.

The reason we were huddled together in our ponchos holding picket signs on a chilly Saturday is simple: Autism Speaks doesn’t actually help autistic people. The bulk of Autism Speaks’ funding goes to genetics research and trying to find the cause of autism in order to prevent it. This doesn’t really help those of us who are autistic and already exist. We need research on how to improve our quality of life. We need support and resources for autistic adults after we leave school. A skimpy 4% of Autism Speaks’ budget goes to individual and family services. Additionally, there are no autistic people in leadership roles at Autism Speaks. We have no voice in the direction of a group that claims to be for us. Jon Elder Robison, the only autistic person to ever have held a position of power at Autism Speaks, notes, “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

The people who donate to Autism Speaks, by and large, don’t know any of this. I spent the majority of the protest talking to people and handing out informational flyers. Almost all of the people I interacted with were shocked at how poorly Autism Speaks serves autistic people. Others were happy to learn why some people don’t like the organization, as they had been curious. A few people brushed us off entirely. We didn’t press them. Most of our group stood silently, occasionally making friendly gestures. Then, the rally organizers called the police.

This is an image of six people holding signs at a protest against Autism Speaks. The signs read: "Autistic people are speaking. Why aren't you listening," "ASAN" with the ASAN logo, "Nothing about us without us," "You are perfect just the way you are!," and "Civil rights, not a cure."
Truly, we are terrifying. Maybe it’s the ponchos?

I don’t know what the Autism Speaks organizers told the officers about us. Given the amount of hostility we faced, it probably wasn’t good. 3 armed police officers were sent to deal with 6 people holding damp cardboard signs. They told us to move to a less visible spot across the street. After a quick discussion with Rachel Best, the leader of the Autistic Self Advocacy Network DC chapter, we decided to comply with the officers’ request. We tried to move to a different location with better visibility. We were told to move again. The second time, we were told that if they saw us again, they would arrest us.

This was not my first protest. This was, however, different from any other protest I’ve been to. When I marched with Black Lives Matter and Slutwalk, there were hundreds of us. We filled the streets. We obstructed traffic. I felt powerful. I felt like I was making a difference. Being one of a handful of protesters standing against an event that attracted thousands was demoralizing. I was happy to spend time with other Autistic people, but I couldn’t help feeling some despair. When there are so many of them and so few of us, how can we change anything?

This is an image of anti-Autism Speaks protesters holding signs at the National Mall. There is a lot of construction in the background. The signs are the same as the ones from the other picture of the group, except for the addition of a person in a blue raincoat and noise cancelling headphones wearing a sign that states, "Finding a Cure Won't Help Us.".
We went to wear our scary ponchos somewhere else.

Everyone knows the story of David and Goliath. David, the future king of Israel, takes down Goliath, the powerful champion of the Philistines. Goliath is a little over nine feet tall and is covered in bronze armor. He carries an enormous sword. David spends most of his time taking care of sheep, and is armed with a slingshot. Goliath challenges any of the Israelites to come fight him. David does, and against all odds, David wins.

In 2014, Autism Speaks received almost 10 percent less money from donations than they had received the previous year. Steve Silberman, a well-known science writer, has brought criticism of Autism Speaks to the mainstream. There were, according to Autism Speaks’ own estimate, 2,000 people at their DC rally this year. Last year, there were 8,000. There may have only been a few protesters at the National Mall, but there are thousands more online. Slowly but surely, things are changing. People are beginning to understand what Autism Speaks actually does. I have hope. This is what it’s like to be David and we’re going to win.

Martin Shkreli is a Fool, Not a Supervillain

When Martin Shkreli’s company, Turing Pharma, purchased the rights to a drug, Daraprim, and hiked the price from $13.50 to $750 per pill, my first response was outrage, along with the rest of the internet. Unlike most of the internet, I also felt a distinctive jolt of fear. I am part of the small population of people who rely on Daraprim.

Many articles describe Daraprim as a drug used to treat AIDS, but that’s not quite accurate. Daraprim treats toxoplasmosis. About a quarter of Americans are infected with toxoplasmosis, but for most, it’s not anything serious. Some people feel some minor flu-like symptoms for a few weeks, if they feel anything at all.

For pregnant mothers and people who are immunocompromised however, toxoplasmosis is something much, much worse. Without the benefit of a healthy, developed immune system, toxoplasmosis causes ocular and neurological damage. Most of the people at serious risk are AIDS patients. These folks face severe illness, dementia and blindness. A smaller percentage of those at risk are people like me, who contracted toxoplasmosis before we were born. We deal with a range of issues, including but not limited to: Blindness, epilepsy and developmental/intellectual disabilities.

A delay in treatment for people who need it means toxoplasmosis has more time to do its damage to the eyes and brain. I felt my stomach drop as I read doctors weigh in on Daraprim. The drug is now too expensive for some hospitals to stock, and for others the drug is already almost totally unavailable. Dr. Rima McLeod, a major toxoplasmosis researcher, says she’s been able to access Daraprim by asking Turing Pharma directly, but one shouldn’t have to know an influential medical professional to access such an important drug. And even if someone does know the right people, the delay is still there.

These are tweets. Sara: I am one of the people who needs daraprim. @MartinShkreli is it hard to be an actual super villain? Sara: The real question is if @MartinShkreli is using the $$$ from jacking the price of daraprim to build a subterranean volcanic lair.

My knee-jerk response to all of this was to see Martin Shkreli as the kind of supervillain you’d see on an episode of Captain Planet. My initial tweets were not kind, and I lashed out with everyone else. Daraprim saved what’s left of my eyesight. The side effects can be pretty brutal, but in relation to what they treat, they’re not too bad. No one else who’s taken the drug seemed to be involved in the conversation, so I thought I’d weigh in and contact Martin Shkreli. To my surprise, Shkreli tweeted back.

 

When confronted about hospital shortages, Shkreli’s response has been to personally distribute affordable or free drugs to low-income patients when medical institutions and researchers ask for them. The problem, which he doesn’t recognize, is that he’s created a structural problem in the supply chain. The vast majority of people who take Daraprim are economically disadvantaged. People should not have to rely on someone’s benevolence and charity to get necessary medical treatment.

More twitter conversation referenced in the body of the essay. This exchange involves Shkreli asking which hospitals are short of daraprim so he can personally remedy the situation.

The problem with Martin Shkreli is not that he is Snidely Whiplash, gleefully tying sick people to railroad tracks. The problem is that he lives in Libertarian La La Land, where profit is thought to be the best way to enact positive change. Shkreli honestly thinks he’s doing the right thing, and that increasing the amount of money for toxoplasmosis treatment R&D while making a tidy sum for himself is good for the world. No one needs the R&D and both doctors and patients are pretty satisfied with an existing treatment that they can actually get, but that’s irrelevant to him. He’s on a mission to fix the world. This naïve worldview is unfortunately common among the affluent startup set. When Shkreli says he doesn’t understand why people are getting upset, he’s being sincere. I’d feel sorry for him if I wasn’t worried about myself and the other people who rely on Daraprim.

More Twitter. Me: Not gonna lie, daraprim side effects suck, but they easily beat permanent neurological damage. Shkreli: why not an ideal treatment? Me: Because a treatment I can afford beats an ideal treatment.

What can be done? Everyone from Hillary Clinton to the Pope has called out the system that allows pharmaceutical companies to control rates with little consideration for the needs of patients. In the face of overwhelming pressure, Shkreli has relented and says he will lower the cost of Daraprim, but he has not said by how much. The legal loopholes Shkreli’s startup used to acquire Daraprim and other drugs for the sole purpose of raising their costs need to be closed. It should be easier for competing companies to get approved for and produce Daraprim so the “free market” Shkreli and his cohort are so in love with can actually do its work. Some politicians have even raised the possibility of price controls.

As we head into the election season, pay close attention to what candidates say when they are confronted with the case of Turing Pharma and similar businesses. If you see something that looks fishy, write about it. Tweet about it. Tell everyone you know. Daraprim isn’t the only drug that pharmaceutical execs have increased the price for astronomically. The only reason Shkreli’s company changed its position is overwhelming pressure from the public. Our voices count.