Please Stop Using the Word "Challenges": An Open Letter

Dear Well-Meaning but Misguided Professional Allies,

Could you please stop using the word "challenges" when describing the struggles, turmoil, and often pure hell that autistic people go through? It's really, really irritating. When you write articles about how it's "challenging" for autistic kids to make and keep friends or "challenging" for autistic adults to find and keep jobs, you are missing the mark. I know you mean well, but when you use such words I strongly suspect that you don't appreciate the reality of living on the autism spectrum. I also suspect that it is your way of being "sensitive" and "politically correct", that you are afraid of offending us by using more direct and honest terms. But all it does is undermine and minimize our realities and ultimately fail to educate the general population. You are using euphemisms, which I absolutely HATE.

Why do I hate euphemisms? Ultimately, euphemisms are an inaccurate representation of the reality that they are attempting to address. It also has an undertone of denial. For example, the euphemism "passed away". Okay, I can understand using "passed away" when a 90-year-old dies in their sleep, but using "passed away" when someone is shot and killed with an AR-15 in a school shooting or falls off a cliff while hiking the Grand Canyon, is abhorrent. The school shooting victim was MURDERED. The person who fell off the cliff in the Grand Canyon DIED. This over-the-top, euphemistic language perpetuates a culture that is in denial about death, but that's another discussion altogether.

Now that you have a solid example of why I don't like euphemisms, let's talk about "challenges" and why its usage when describing autistic people's lives is intellectually dishonest. First of all, a "challenge" describes something positive. Doing a puzzle is a challenge. Taking an advanced-placement calculus class is a challenge. Hell, even climbing a mountain is a challenge. It is something the person is choosing to do to improve their brains, physical strength, and so forth-- and they can back out at any time if the task proves too difficult.

Saying that an autistic person is "challenged" when describing the tortuous attempts to accomplish the necessary day-to-day tasks for social and financial survival that the neurotypical world takes for granted is a completely inaccurate assessment of what many of us go through. Nobody would dare tell a person in a wheelchair who falls down a flight of stairs because they weren't provided a wheelchair ramp that entering the building was "challenging" for them. Likewise, you shouldn't describe a bullied autistic child's repeated failures to make and keep friends "challenging". And an autistic adult with a Master's degree who is only able to obtain and keep $12/hour data entry jobs is not someone who finds obtaining employment "challenging". In these two examples, these people are often tormented and tortured by these realities, which are often because the neurotypical world at large does not understand autism and in many cases can't be bothered to do so. Even in 2018, autistic kids are often still told that they bring the bullying upon themselves, and autistic adults who can't find rewarding work are often told that they're "not trying hard enough." And let's not forget how often people tell us that we are "making excuses".

These days I generally make friends with ease (though my close friends are few), and after fourteen years I finally have a rewarding job as a graphic artist. On May 30th, it'll have been a year since I've had this job. And yes, I said fourteen YEARS. Not months, YEARS. I spent those years going back to school-- I went back TWICE-- only to hit the same brick walls as I had after finishing my undergraduate degree in 2003 as an autistic person in a post-9/11 New York City economy. In one case, after going back to school for library science, I was fired from two children's librarian jobs due to lack of understanding among my employers and the parents. In the second case, I took a web development immersive, only to discover that I have non-verbal learning disability which makes things like programming overwhelmingly difficult for me to learn (so much for the stereotype that autistic people are programming geniuses). I wouldn't dream of describing these fourteen years as "challenging". I'd describe them as difficult, frustrating, torturous, and sometimes pure hell. If you think that "challenging" is the appropriate word to describe these experiences, then you simply don't get it.

I am not trying to enforce prescriptive language-- I hate that as well. What I am asking you to do is to raise your consciousness. Think about what words you are using and why. Don't patronize us. And when in doubt, ASK.

Regards,

Julie

Updates

Jeez, it's been a while since I've posted, and when I wrote my last post I was in a very dark place and feeling utterly hopeless.

I'm happy to say that things have gotten better: At the end of May, I got a full-time job at an autism-friendly workplace in which I can use my drawing and writing talents. Despite my lack of professional experience in this area, my boss hired me based on raw talent, knowing that my lack of professional experience was likely Asperger's-related and not due to laziness and other factors people are often too quick to assume.

Ironically, I found this job through the school in which I had been taking the web development class. I haven't touched coding since I've gotten the job, however. After all, at long last I have a job doing work based on where my talents actually lie-- writing and drawing-- than in the "practical" areas that society says I ought to have.

While I enjoyed the environment at the school where I took the web development class, the learning process caused me a lot of stress and anxiety; it has since been confirmed that I have nonverbal learning disability, which I think might account for the difficulties I had in learning the material. While I might pick it up coding again eventually, right now I'm glad to be able to focus on my art and writing. I've been going to open drawing sessions, I've taken watercolor painting classes, and in November I'll be going to a one-day writing workshop.

I'm not completely financially independent-- the company I work for is a startup and does not currently offer medical benefits. My insurance is $234 a month (I opted for this more expensive insurance because of a procedure I have to have in a couple days, which will be explained below), and my parents foot the bill for that and help a little bit with the rent. And whenever I take a class, they pay for it. But it's still a far cry from where I was before, 100% dependent on them and feeling completely hopeless about the future.

Another update: In May I learned about something that initially scared me but have since learned is manageable: I have a cerebral aneurysm in my left internal carotid artery. It is 3-4mm in diameter, which is considered small. Since my blood pressure is excellent and because I don't smoke, it is currently not life-threatening. However, this could change as I get older. My neurosurgeon offered (rather than actively recommending, as all surgery comes with some risk) to treat it. I decided to go ahead with it because while right now the chance of eruption is next to zero, in twenty years we're talking about numbers like 10%-- a bit of a game of Russian Roulette. Right now, with the minimal risk, I was also glad to find out that I could even continue exercising-- running, lifting weights, swimming laps-- so long as I didn't do something extreme like run a marathon. Since I was given the green light for exercising, and since summer is my favorite season, I decided to go in for surgery at the end of the summer-- this Wednesday, September 20th, at Massachusetts General Hospital.

So what will they do? Shave my head, drill into my skull, and clip the aneurysm? No. Clipping is a process that is usually done on aneurysms on the surface of the brain. Mine is in my left internal carotid artery, and drilling into my head to access the aneurysm would be pretty risky. The surgeons are going to do a different procedure, one that is often employed for people with aneurysms that are deeper inside the head. They're going to insert a catheter in my femoral artery at the groin, run the catheter all the way up to my head, and deposit some coils inside the aneurysm sac. Since it's a wide-necked aneurysm, they will also put a stent inside the artery to hold the coils in place. The coils induce blood clotting and ultimately seal off the aneurysm opening to prevent blood from getting in. And I get to leave the hospital the next day. Pretty low-key surgery for what is technically brain surgery (sort of; the aneurysm isn't IN my brain, just near it).

Then, my parents will drive me to Pennsylvania, where I grew up and where they continue to live, so I can recover. I'm really excited because some friends that I went to film school with in New York City and who now live in Los Angeles are, ironically, moving to my hometown in Pennsylvania. They are there right now looking for a house, so I'll get to see them while they're there. They're probably going to be moved by Christmas, and they might start coming to my family's Thanksgiving and Christmas gatherings every year. So I'm pretty stoked about that.

However, the reptilian part of my brain is worried about complications during the surgery-- such as the catheter popping the aneurysm-- and I'm a bit nervous about going under general anesthesia because I don't know what it feels like. The idea of having control taken away from me-- "Here, we're going to stick a needle in your arm and you're going to go into medically-induced coma and there's nothing you can do about it"-- freaks me out. But the logical part of my brain thinks that the surgery will be uneventful, and recovery will be a snap. When I had an angiogram (which involves injecting dye through a catheter inserted into the groin, going all the way up to the head), the doctors gave me a sedative that had practically no effect on me. They said that even for a young person, I was unusually awake and alert during the procedure. They explained that it means my liver processes drugs very efficiently. So my guess is I won't be one of those people who is super fatigued after surgery.

Well, that's it for today's post. Sorry it's been so long, but as you can see it's been a hectic year!

Angry

I'm angry at so many things right now.

I'm angry that I was born in 1980 instead of 20 years later. This meant growing up in an age of profound ignorance, when there was no word for Asperger's. Instead, I was that problem kid with the mysterious behaviors, someone who my parents and teachers concluded had psychological problems.

I'm angry that my parents didn't know just how aware I was that they thought there was something psychologically wrong with me.

I'm angry that I was expected to change, and that I was conditioned by pretty much everybody to believe that when I got bullied, it was because I brought it upon myself, that others were just "responding" to me.

I'm angry about the cliche that those who bully others are going to grow up flipping hamburgers. No. It's absolutely not true. I know for a fact that a number of the people who bullied me have successful careers. Me? I'm stuck trying to get an entry level job. It's like I've been 22 for the past 14 years.

I'm angry that by the time I went to college, there was still no word for Asperger's-- and instead of getting bullied by other students, I was bullied by teachers, which had rarely happened to me before.

I'm angry that my parents, my mom especially, were so fucking blind to the reality when I told them what was going on in college, that they thought that I was exaggerating.

I'm angry that my teachers in college gave me no tools for going out in the real world with what skills I had; they just told me to give up. One in particular took delight in seeing me fail and suffer.

I'm angry that I had a crush on one of those abusive teachers. What does that mean about me? Am I attracted to abusive people?

I'm angry at how many things about me that are well-understood by psychologists today were shamed by others during my childhood and early adulthood: my obsessions with movies, the fact that I couldn't handle myself when I got a crush on someone, the fact that I RARELY got a crush on anybody, my sense of humor, my slightly-skewed gender identity, etc.

I'm angry that all of this stuff is connected-- that I'm 36 years old and still paying the price for who I am. I still don't have a job. Who the fuck would hire somebody with a patchwork resume of dead-end jobs and multiple degrees that went nowhere?

And because of this, I'm angry when people ask me, "What do you do for work?" For me, it's like one of those "When did you stop beating your wife?" questions. So many loaded assumptions: I'm 36, white, and from a middle-class background, so OF COURSE I must have a career!

I'm angry that I have more skeletons in my closet than a fucking graveyard. I'm angry that my story is so unbelievable that it's the equivalent of airing my dirty laundry in public. I'm angry that on occasion when I DO tell my story, they think I've reached the fundamental point within ten seconds, but the reality is that I've just begun telling it, that it's that long, that convoluted, and contains multiple traumas.

I'm angry that everybody else on the spectrum I've met doesn't have a story even remotely similar to mine:

They're either people with penises who A) Fit the autism stereotype of computer genius and have a successful career, or B) Are so fucking naive and clueless that they don't know what their reality is;

They're people WITHOUT penises who haven't been through the hell I've been through because they were naturally quieter than me. They were able to slip under the radar of "concern".

I'm angry that even within the psychiatric community, there still seems to be this profound misunderstanding that if you have Asperger's you're likely a computer genius and super literal. And you have a penis.

I'm angry that the only services for adults on the spectrum are for people who are so fucking clueless that they need it explained to them that they shouldn't, for example, talk about their masturbation habits at work, because it will make people uncomfortable and get them fired. There are no services for people who have bizarre, complicated problems like mine.

I'm angry that when I tell people I don't understand something, people ask, "What don't you understand?" They see it through a neurotypical perspective no matter how many different ways I try to explain it to them: When I say "I don't understand something", it means I don't fucking understand it! PERIOD! When I was a kid, this was pretty much any movie more complicated than Home Alone. This wasn't me saying, "I don't understand why that guy committed suicide at the end." It was, "I don't understand what the movie is about, what's going on, ANYTHING." As an adult, it's when I'm trying to learn programming. Telling me to "Walk away and come back an hour later" is not going to help WHEN I DON'T FUCKING UNDERSTAND THE MATERIAL! I try to explain this to people, and either I'm explaining it poorly, or they just can't see it! Well, let me give you a metaphor: Go out on a PITCH BLACK NIGHT and say, "I can't see anything." Well, how will you answer it when I ask you, "What don't you see?" Yes, this is what I mean when I say, "I DON'T UNDERSTAND!"

I'm angry that I have to ask my parents for money all the time "until I get a job". With each passing day, I continue to lose hope that this will happen. I wake up in my tiny, paint-chipped apartment and think "So this is my life."

And I'm angry and how much strain I'm putting on my parents financially and perhaps emotionally. Who the hell signs up for this sort of thing when they have kids?

People Just Don't Get It

Note: This is an angry rant, so there will be some swearing. If you're offended by that sort of thing, just read my other blog posts.

This post is an angry rant, because I am pretty fucking angry. It's hard enough to keep a happy, optimistic face for this blog. I want this blog to come across happy and optimistic because I want to give parents hope that everything is going to be okay. But I have to be honest. There is a lot in my life that isn't okay. Sometimes I get so frustrated and angry that I break down crying, thinking, "Where do I even begin to fix this?" And by "this" I mean being financially independent like my peers. I am turning 34 in October, and I still don't have a career or even a decent-sized apartment, let alone one that I can afford on my own. Everybody else my age I know-- and many ten years younger-- has a career, has a decent-sized apartment (or a house, if they're in the suburbs), and doesn't need help from their parents to make ends meet.

"Oh, but at least you're not starving in Africa. You don't know how lucky you are." You know what? You're right. I'm not starving in Africa. So fucking what? That doesn't make my frustration and anger any less real (It's a logical fallacy; I forget what it's called). I grew up relatively privileged, in a white, middle-class household with educated parents. I lived in a relatively affluent suburb in Pennsylvania. I went to college and grad school. Given my background, I should have a career now and be financially independent. But if you have Asperger's Syndrome, growing up privileged doesn't mean shit unless you are born into wealth. I still have to get a career. I have a Master's Degree and am making $12.75 an hour at a temporary work-at-home job. What is my job? Transcribing. Mind-numbing transcribing that any idiot with a GED can do. And because I lost my last two jobs, each after a paltry four months (in both cases they said I was too awkward and made our clientele uncomfortable), to stay in Boston I had to give up my spacious, one-bedroom apartment and downgrade to a studio. It's $1200 a month, and the only way to get any lower in Boston is to live in a basement apartment not much bigger than a walk-in closet with no windows. Even then, the lowest the rent goes for something like that is $1000. The other option is to get roommates, which can bring each person's rent as low as $700-$800 per month. But all my roommate situations in the past have been disasters. My parents even said they would rather help me pay for my own little corner of the universe than take the chance that I would get into some ridiculous conflict with roommates and then have to move out (moving, of course, isn't free).

I know that I'm more intelligent than my employment history and living circumstances reflect but that makes no fucking difference unless you have pristine social skills. And research has shown that the decision to hire someone an any job is almost entirely based on how well they think she'll "fit in" with her coworkers, much more than if she has the talent to do the job. I'm not the kind of person who fits in. It's not that I haven't tried, it's that I can't. Making friends is not an issue for me because I live in a diverse city and can easily find social misfits/intellectual nerds who'd rather talk about psychologically intense topics than how someone's third cousin once removed is doing. But most people would rather talk about the latter, and that's what they expect you to do on the job, even if it is not related to the job description. People know when I'm faking it. I can only feign interest in somebody's third cousin once removed before the holes in my mask start to form. I then have to retreat to my little corner of the universe and do my work. But no. Most high paying jobs expect you to work as a team. I work in groups with about the same ease and naturalness as an asexual person behaves like John F. Kennedy.

"Oh, well have you tried this? Or that? Or the other thing?" Yes, of course I have. I've finished my undergrad 11 years ago. You think I haven't fucking tried? Of course I have, and I've run into one brick wall after another.

Oh, and people have told me over and over that I come off as harsh, angry, argumentative, and even cold.

"You know, the way you're talking to me when you're upset, you're real intense and argumentative and harsh. Maybe that's what's gotten you in trouble at work." No! That's not what has happened! I'm letting my guard down with you. At work I try to hide these emotions. People have told me I'm too "intense" or "harsh" or "argumentative" even when I'm happy or joking around. It's like all I have to do to fucking offend someone is open my fucking mouth, even if I just ask how they are! So you know what the other option is, to make sure I don't offend anyone or make anyone uncomfortable? Not talk. And then I become a fucking stiff and they still feel uncomfortable, but for different reasons.

"Well, you know, you do tell inappropriate and sometimes shocking jokes. Do you do that at work?" 

Yes, I have a raunchy, macabre, and downright absurd sense of humor. I also love saying things for shock value just to see how people react. But you know, I'm not Rainman. I tell the "shock value" jokes you're talking about to friends or on online social networks under an anonymous name, not in a professional setting. My friends laugh, and people online click "like" or write "Hahaha!" I learned years and years ago that there's a time and a place for these things, and work sure as hell isn't it. People at work have called me "inappropriate" for reasons that I'm not sure of but that have nothing to do with the jokes I tell outside of work.

"Well you're very interested in the work of Richard Dawkins and Dr. Kevorkian. You bring those guys up all the time. Are you talking about them at work? You can't do that, you know. They're too controversial."

Yes, I fucking know that I can't bring up these guys or their work in a job setting-- especially not Dr. Kevorkian-- because people at work represent a diverse range of sociopolitical and religious beliefs and I don't know these people well enough to have such discussions with them. I don't feel deprived if I can't bring up Richard Dawkins or Dr. Kevorkian, either. I am at work to do work. Of course, the funny thing is I've heard radically conservative people at work bring up their shocking views without getting in trouble. 

"Maybe you are talking about Richard Dawkins and Dr. Kevorkian and you don't realize it?"

I think I'm fucking aware of what topics I'm bringing up. Don't patronize me.

When people-- friends, relatives, and even my shrink-- say these things to me, they clearly don't get it. I know they're trying to help me, reaching for the lowest hanging fruit, so to speak. But after a while it's like I'm hearing a mantra, a list of phrases from a pull-string doll. And yes, when I get frustrated enough, I do explode and curse a blue streak (it upsets them, but they know not to take it personally and I do apologize later). But they don't get it. They really don't. Why? They're coming from a neurotypical perspective, that the only way that I as a white, privileged middle-class American could be in this situation is if there was something I haven't tried. The fact that even my shrink gives these obvious suggestions is very telling. Hell, even my parents only started to "get it" in the past five years or so!

This is my life as an adult with Asperger's. Don't get me wrong: I am happy most of the time. But then sometimes (like last night when I was talking to my shrink) old wounds get reopened. No, they get reopened, have salt poured in them, and are pissed in. And I get angry and explosive and cry. Sometimes I just can't take it. Working out usually helps a little, but recently I injured myself while running and I can't do much of anything in the way of vigorous exercise until I heal. 

I'm angry. I'm hurting. I'm cynical. I'm frustrated. I have Asperger's Syndrome.