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

"Psst! Look! There's someone with REAL problems!"

When I was growing up with undiagnosed Asperger's Syndrome, I felt like a freak. I knew I was different and I did not have an answer as to why. What I did know was that a lot of kids were mean to me, and a lot of adults-- including my own parents-- did not understand me.

Sometimes, in tears, I lamented about being a "freak" and having problems that seemed to have no solution. Sometimes my parents tried to help me put things in perspective, but in a very superficial and unhelpful way. For example, once we were eating at Chi-Chi's (a Mexican restaurant) and someone with no legs and hooks for where his arms should be was sitting in a wheelchair about ten feet away from us. My dad whispered to me, "Now there's someone with REAL problems." Another time, my mother (who is a high school teacher) said, "You think you have it bad? One of my students is pregnant." It wasn't just my parents who did this. Once, my best friend said, "Your problems are not that bad. At least you're not dying of AIDS or something!"

I bet if I told these stories to an auditorium of Aspies and asked how many of them have stories like this, every single one would raise their hands. I also am willing to bet that all of them would feel the same frustration I did. I was about twelve when my dad pointed out the limbless person in Chi-Chi's, and I remember that his comment didn't make me feel any better. Same thing when I was 15 and my mother told me about her pregnant student. Same, too, when I was also about 15 and my friend told me that at least I wasn't dying of some deadly disease. None of these comments made me feel better because I always knew that what I was going through was unheard of. Getting pregnant, dying from AIDS-related complications, and even having no limbs were problems that at least had names and explanations. In fact, I recall telling my friend that I would rather be dying of AIDS-related complications and have friends than be physically healthy and shunned by an entire society (which is what I felt like was happening). And this was not just something I said on a whim. I meant it.

In any case, just because someone complains about problems that are not as (superficially) serious as a deadly disease or the loss of limbs or teenage pregnancy does not mean that the problems are not just as real. With that logic, one could tell the person with HIV that at least he has all of his limbs, and at least he lives in a country where HIV can be managed for decades with medication and is not an immanent death sentence like it used to be. One could also, then, say that unless the person has problems that are not the absolute worst in the world (whatever that is) then he or she should not complain. By then, one has alienated the vast majority of the world, whose problems are suddenly not real.

Please, do not tell your kids or friends with Asperger's Syndrome, "At least you're not dying of some deadly disease" or something similar. It trivializes the very real anguish they are experiencing. Just because AS cannot be confirmed visually like the lack of limbs, a deadly disease, or teenage pregnancy, does not mean the problem does not exist. Furthermore, trivializing your kids'/friends' issues may make them feel like their problems are all in their minds and that they're crazy for feeling anguish. The last thing someone with AS needs is to feel even crazier than they already feel.

New Article Published in "Autism/Asperger's Digest"

My new article, "An Aspie's View of Death," has just been published in THE PRINT EDITION of Autism/Asperger's Digest. I just got my magazine on December 23rd. However, it may be a bit longer before the issue is released to the general public. Keep checking for updates here!: http://www.autismdigest.com/

I'm Honest and Your Baby is Ugly

Lately on Facebook I have seen babies, babies, babies, and more babies. As far as I'm concerned-- and at the risk of, perhaps, alienating half my audience-- newborn babies generally look the same and look ugly (And no, I was not exempt from this rule as an infant). Inevitably, when somebody posts a million pictures of his/her newborn on Facebook, a flurry of "He's so cute," or "She's perfect!" dominates the comments sections of these pictures. I seriously wonder how many people genuinely are honest when they post these comments. Maybe a few, maybe even most, but not all. In fact, it's largely a social grace, a lie-- and presumably the new parents know that they're merely hearing a social grace rather than an honest opinion-- and perhaps a form of reciprocal altruism that is prevalent in social species.


Don't let the title of the blog entry fool you-- I'm not going to write, "Your baby is ugly" when I see pictures of babies posted on Facebook. But I'm not going to tell a boldfaced lie and say that s/he's "perfect" or "cute." If I want to be supportive, I'll say things that I really mean, such as, "I know you'll be a good mom/dad." 


Quite frankly, routine social graces feel phony to me, and I hate small talk. Dr. Jack Kevorkian once commented that he disliked small talk and also said that he hated how people routinely lie to each other in ways that I just described; these complaints are common among people with Asperger's syndrome which is one of many reasons why I think Dr. Kevorkian had AS. Call me cold, but when I go to work and bump into someone I barely know, I don't care how they are. No, that doesn't  mean I wish them ill, but I am really ambivalent to how they're doing, and I think if people were more honest with themselves they would agree. If somebody I barely know asks me how I am, I say, "Hey, what's going on?" That more casual greeting feels less phony to me than, "How are you?" At a job interview, I do say, "How are you?" because, unfortunately, successful job interviews are laced with phoniness. 


Is it cold for me to say that I am ambivalent that a casual acquaintance's mother is in the hospital? Here, I do conform to this social grace by saying, "Is she going to be okay?" because it is a profound situation, but I forget about it two seconds later. Does that sound insensitive?


It occurred to me recently that if I managed to do something to change the world for the better, ultimately my happiness about this would be in sheer pride more than, "I'm glad that other people are doing better," or "I'm glad that they are suffering less." Although I would be glad about these things, ultimately it would be a real boost for my ego. What about that? Does that sound selfish? I'm reminded of another Dr. Kevorkian moment. In 1998, when Dr. Kevorkian was on 60 Minutes after he injected one of his patients directly, he told the host, Mike Wallace, "I'm fighting for me, Mike. Me. This is a right I want. I'm 71... I'll be 71. You don't know what'll happen when you get older. I may end up terribly suffering. I want some colleague to be free to come help me [to die] when I say the time has come. That's why I'm fighting, for me. Now that sounds selfish. And if it helps everybody else, so be it." Mike Wallace, and many other interviewers, also said that when they talked to Kevorkian privately, they found him to be a very compassionate man. So why would he say something brazen like that if he didn't care about his patients? Obviously I can't get inside his mind, but I think in those four sentences he summed up what I'm saying here-- You may care about other people, but in the end you're the person you care about the most. He cared about his patients, but ultimately he wanted the right to die for himself. I think he was just more honest about his motives than most people in his situation would be.


Reciprocal altruism is, I think, why we pretend to be incredibly upset that the mother of somebody who we barely know is in the hospital or that we think somebody's ugly baby is cute. Yes, caring about the person, even to a minimal extent (depending on your relationship with them) may be part of it, but in the end it's about you. If you pretend to be more upset than you are about an acquaintance's mother being in the hospital, that person will like you better and be more likely to help you if you need it. Same thing if you pretend to think somebody's ugly baby is cute. 


And how many of you who cry at funerals really do it because you feel badly for the person rather than that you simply miss them? I think if people were more honest they would admit that they cry at funerals for themselves, not for the deceased. 


I think people with Asperger's are just more honest about their motives and how they really feel and are more aware of it because these social graces were not something that they acquired unconsciously but something that had to be taught to them.


There is no such thing as true altruism. 

"Asperger's and Death Part II" or "Confronting Your Own Discomfort"

Due to the popularity of my "Asperger's and Death" (it gets the most hits besides the intro page), I am going to address death again, and this time by talking about a famous person.


Dr. Jack Kevorkian.


Yes, Dr. Kevorkian, infamously known as Dr. Death for his in-your-face advocacy of voluntary euthanasia as an option for suffering, terminally ill patients. If anybody has ever watched interviews with him or seen his biopic, You Don't Know Jack, you know that he is a very odd, intense, and hyperfocused man. 


Could he have Asperger's syndrome?


Obviously, I don't know as I've never even met him. But let's take a look about what we know about him from television. I won't lie-- I find him brash and tactless in some of his interviews. I don't always agree with what he says either. For the most part, however, I think he is one of the most brilliant thinkers of the past hundred years, has a lot of good things to say, and is tragically misunderstood because his fascination with death is considered taboo.


Dr. Kevorkian rightly points out that many people are ludicrously uncomfortable with the subject of death, be it in the context of his euthanasia advocacy, his wonderfully disturbing paintings, or the fact that as a young man he did a research project in which he learned that he could determine the moment of death by looking into a patient's eyes and observing the changes.  


Kevorkian has many interests- art, music, and so forth- but he also seems to be very hyperfocused on death. This, combined with his intense facial expressions, mannerisms, remarkable talents (engineering, art, music, foreign language, and, of course, medicine) difficulty connecting with people during his teenage years, and according to friends, a minimal social life and lack of common sense, makes me think he may have Asperger's syndrome.  Many parents and friends of people with AS seem to experience inordinate discomfort about an AS person's obsession, even if with something as benign as trains. Why? I guess because they're not used to it. What happens, then, when that topic is death? 


When I first learned about Kevorkian's eye study, I was intrigued. Then I felt guilty, like I was "supposed to" cringe because if I reacted otherwise it meant something was wrong with me. The problem is that people think that if you're fascinated with death then you may be someone who wants to kill people. This is nonsense. If someone is fascinated with indigestion, does that mean that he cheers for joy when someone pukes on the floor? Being fascinated with the PROCESS of death can easily be completely divorced from the emotional reaction to the loss of a friend, family member, or even a perfect stranger. 


I confess to having a slight fascination with death, but I'm also fascinated with a lot of natural and medical processes. In my first "Asperger's and Death" post, I confessed that when a friend died I not only cried but also researched the decomposition process. Yes, it was my way of dealing with this tragedy, but I would be lying if I said there wasn't a bit of scientific curiosity involved too. What's wrong with that? Guess what? Dr. Kevorkian confessed to crying at some of his patients' assisted suicides which he otherwise approached in a nonemotional manner. 


How many people out there have a fascination with death and are afraid to admit it? Am I more honest about it because I have Asperger's syndrome? Is Dr. Kevorkian? Or are people like us the exceptions, not the rule? I don't know. But I do know that neurotypical people often keep more secrets about "taboo" interests than those with AS because they're so worried about what everyone will think.


You may not agree with Kevorkian's stance on euthanasia, and that's okay. I completely understand that it's a difficult issue for many people (just so you know, he turned away about 97% of the patients who told him they wanted to die). However, I think what we may all be able to agree on is that he has raised consciousness by exposing the absurdity of taboos. Sometimes, probably more often than you think, responding to someone's concern about a friend or child's fascination with death ought to be an emphatic, "So what?" 


Indeed, sometimes it takes someone with Asperger's-- or, at least, someone a little odd-- to make us question our assumptions and the rationality behind our knee-jerk reactions. That opportunity is here now. 


Do it.

Asperger's and Death

Death is not easy for anyone to accept. When a friend or family member dies, most people handle this devistation by crying or grieving in some other way and go to friends and family for support. Do people with Asperger's syndrome grieve differently? In an email exchange, famous Asperger's authority Tony Attwood told me that many people with Asperger's syndrome use knowledge and information to handle their grief rather than seeking affection from others. 


In Attwood's book The Complete Guide to Asperger's Syndrome, Attwood relates an incident in which a boy's father was away doing a photo shoot on a war. The father had been missing for a few days and everybody was worried. The boy kept asking his mother about what weapons each side of the war was using and how many people were dying. When his father did come back, the boy asked Dad how many photos he had taken of dead bodies. The boy's family thought he was unconcerned and didn't feel compassion, but this was how he handled the concerns he had about his father's life. Obviously, he wanted to get a clear picture of what was happening, possibly to assess the risk of death his father faced; he was not at all trivializing the situation.


I can understand this boy's perspective. Last week, I found out that a girl I met in 1997 on a summer teen group tour died in a tragic accident. I only saw her once since the trip, in 2007 when she was passing through NYC, we only occasionally kept in touch, and we weren't close. I did, however, grieve a little. I cried. I lamented about not having gotten to know her better because she seemed like a great person. On the trip, she had helped me at least once with social problems I was having.


I also found myself recreating the accident in my mind. I wondered what her last thoughts where and how quickly she died. I tried to picture exactly how the accident played out. I wondered what her body looked like. I even searched the Internet for information about how the decomposition process works. Why? This is not some perverse fascination with death. It is because I have such a hard time wrapping my head around how someone can be alive and happy one minute and essentially cease to exist the next. A once lively face is now just a piece of a decaying body. A once-thinking, intelligent brain is returning to the earth. It does not know it is dead because if it is not conscious, how can it know it? How does it feel to not be conscious? It doesn't. 


It is here that grieving meets scientific curiosity in trying to give closure. But of course this questioning won't give me closure. I know logically I just have to move on and accept that I'll probably never know the exact details of the accident and the aftermath.


Fortunately, I have enough insight not to talk about such things on my friend's Facebook memorial page or with her close friends. Not all people with Asperger's syndrome, however, know this. You may be shocked, for example, because your son seems to be trivializing his beloved grandpa's death. But it is very likely that this is not the case. It may be his way of seeking closure for a death that he is having a hard time coming to terms with. Talk to him. Try to understand why he is thinking this way. It may seem weird to you, but once you understand you might find yourself getting more insight into how his mind-- or your own-- works.