Is It Ableism? Part 10: Challenging Comfort Zones

Links to previous installments in this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

Part 4: Internalized Ableism

Part 5: Is "Overcoming" Worth It?

Part 6: Accommodation 

Part 7: Infantilization

Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

Part 9: Unintentional Gaslighting

I have already covered quite a bit in this series, which is nearing the end (I anticipate twelve installments). In the last post, I discussed unintentional gaslighting, in which well-meaning people who want to help end up causing someone else (usually autistic) to doubt their own experiences and perceptions. In reference to anxiety-inducing situations, I vaguely alluded to the idea of pushing one's comfort zone as well as the potential limits of that. Not the smoothest segue, but I needed to get here somehow, and this very-sticky topic needs to be covered.

Part 1 and Part 5, I talked about the idea that autism is something that needs to be accepted and accommodated, not something for autistic people to "overcome." We would never tell a wheelchair user that they needed to "overcome" their disability and learn to walk, would we? No. However, the brain is more complex and pliable than a pair of legs; it is constantly evolving throughout the person's life. Like autism, another neurodevelopmental disability-- dyslexia-- exists on a spectrum. A typically-developing child who can only recognize her own name in writing at age four is most likely comfortably reading middle-grade novels at age ten. Perhaps a dyslexic child still couldn't even recognize his own name in writing at age four is still struggling with first-grade level books at age ten. A child with severe dyslexia might never learn how to read and will need to listen to audiobooks.* The problem is, others don't necessarily know where on the spectrum the kid falls, and the kid might not even know themselves. So what do we do? We challenge their comfort zones to see what they're capable of and help their brain evolve. 

Right now I can hear the accusations of ableism coming in because I even suggested challenging people's comfort zones. In fact, I wager I'm going to lose a huge part of my audience from this blog post. Well, as I said, the brain is forever evolving. It's a good idea to challenge people's comfort zones to facilitate that evolution, but also realize the potential limitations of doing so. The goal should never be to make someone with a neurodevelopmental disability "indistinguishable" from their typically-developing peers. Giving a chemistry textbook to a fourteen-year-old who struggled with first-grade literature when he was ten is not going to be helpful. Instead, you might give this kid the first Harry Potter book.** If Harry Potter turns out to be too difficult, don't force the issue; give him something easier. It's a challenge to the kid's comfort zone, but also a form of accommodation.

How does this translate to autism? Unfortunately, growing up I felt like my parents tried the autism equivalent of giving a chemistry book to a dyslexic child. Like many people on the autism spectrum, I have prosopagnosia, which sometimes makes it difficult for me to follow what I'm watching in live-action movies. Unfortunately, prosopagnosia was something I also wasn't identified with during childhood. When I was fourteen, my mom-- an English teacher-- seemed to think that the answer to this difficulty was not to show me something with adult themes that was palatable to me-- Stand by Me, a very adult movie with kids as main characters, seems like an obvious choice in retrospect-- but to take me to a black box production of Shakespeare's Macbeth, in which a few actors played multiple parts and didn't even wear any costumes. It didn't help. I couldn't follow the story, and at the end I just felt stupid and that there was something wrong with me for not having the gushing reaction that Mom expected. This felt like being thrown in the deep end of a pool and being told I'd better learn to swim.

Many people on the spectrum have reported similar attitudes from others about making eye contact. While my discomfort with eye contact was limited to unfamiliar adults and was something I naturally moved past around adolescence, many people in autism groups on Facebook have talked about finding eye contact not uncomfortable, but literally painful-- and no amount of intervention changed anything. Some of them even discussed being traumatized by repeated episodes of pressured, forced eye contact. With today's knowledge about autism, it would make sense to look at each kid individually and see what their potential is and what their limitations are. For me and others like me, perhaps making eye contact with a teacher into a fun game would have helped me become comfortable with this task earlier than I did. Some, however, might recoil at this game, no matter how much fun you think it is, and just not be able to do it. In that case, it's time for you to provide more accommodation, in the form of accepting that the kid-- or adult, if eye contact doesn't improve-- cannot make eye contact. Allow them to show you in their own way that they're listening. Maybe this could be in the form of the person holding up a hand. In any case, the autistic person needs to be the one to decide what that gesture is.

Most importantly, accept that someone's improvement in a skillset is going to improve (or not) at the rate that it's going to improve at, regardless of what you think is acceptable.

Oh, what's that? Only we have to have our comfort zones challenged, because we're "broken", right? Wrong. Everybody needs to have their comfort zones challenged, whether or not they have a disability. In fact, I think one of the biggest mistakes we make as a society is not regularly challenging kids for whom everything is easy. Maybe a child grew up always being the smartest person in all his classes and everyone-- including him-- knew it. He was enrolled in AP Calculus and spent all evening with his girlfriend instead of doing his homework. No problem! The next day at school he did his homework during lunch, less than an hour before math class, and got all the problems right. He did this all the time, and even graduated as valedictorian. 

Perhaps this person was so used to everything coming easily to him and was so used to being the big fish that when he began his freshman year at Princeton University, he discovered that this was no longer the case. Everyone around him was a "big fish" from wherever they came. The coursework was more difficult than he anticipated, and for the first time in his life something wasn't easy for him. This person's comfort zone should have been challenged more when he was growing up to prepare him for meeting others like him. Maybe he should have been enrolled in more challenging math classes at a local community college. Or, perhaps this person didn't draw well, and giving him art lessons in high school would have been a good way to challenge his comfort zone and show him that sometimes new skills aren't easy. 

So at the end of the day, all of us-- autistic, neurotypical, highly intelligent, learning disabled, etc.-- need to have our comfort zones challenged so that the brain evolves-- within reason, and in a way that's accommodating and understanding to the individual. For the neurotypicals reading this, I remind you not to be infantilizing when you're helping someone on the spectrum challenge their comfort zones. Make it a team effort, not something that seems to them like you assuming you know what's best for them because you're neurotypical.

Of course, it's also important that we on the spectrum advocate for ourselves and make our needs heard.***

See you next time.

*I don't know much about dyslexia and if I'm getting anything wrong, I invite others to correct me on the scenarios I'm presenting.

**I have heard stories about kids with dyslexia improving their reading skills because they were so determined to read Harry Potter!

***I realize that for many people this might not be easy. Perhaps it's another challenge to their comfort zone, one that a trusted friend or relative can help them with.

Is It Ableism? Part 2: Obvious Definitions of Ableism

In last week's post, I introduced the concept of ableism via a personal anecdote. Then, I acknowledged that it's not easily defined, and defining it requires a lot of nuance. According to Wikipedia, ableism is defined as "discrimination and social prejudice against people with disabilities and/or people who are perceived to be disabled." This is the definition at its simplest, but there's still a lot to unpack. So let's start with a very simple example that damn near everybody would agree is ableism:

In Nazi Germany and its eugenics program, people with physical and cognitive disabilities were deemed inferior and executed. However, it is pretty naïve to think that ableism is limited to such extreme and obvious examples. Just as society is becoming increasingly aware of racism being a structural issue-- as opposed to something simple and obvious like "He's a racist because he's a KKK member"-- it's important to realize that structural ableism is a problem. Often, structural ableism is the result of lack of awareness and understanding rather than intentional maliciousness. A simple example is not providing a ramp for a wheelchair user to enter a building. Or, in the case of an invisible disability, such as dyslexia, not giving a student extra help or some other accommodation. While not as insidious as Nazi eugenics, failing to make accommodations for disabled people is a genuine problem.

Structural ableism is difficult to address, but part of addressing the issue involves being aware of cultural ableism. Wikipedia defines cultural ableism as "behavioural, cultural, attitudinal and social patterns that may discriminate against dignity of disability symptoms, deny, invisibilise, dismiss special needs or may make disability rights and accessibility unattainable." This is definitely a major issue for all forms of disabilities, and I would wager probably more so for invisible disabilities.

When I was a kid in the 1980s and 1990s, the only invisible disabilities that were well understood-- to my knowledge, anyway-- were dyslexia and intellectual disability (people with the latter, of course, used to be slapped with the cringe-worthy label "retarded"). Special education classes and accommodations were increasingly available for people with these disabilities. But as for the invisible disabilities that have been a part of my life like autism, prosopagnosia, and auditory processing disorder? Forget it. Sink or swim. Missed that social cue and made a faux pas? "You refuse to take advice and you refuse to learn from your mistakes. You're not trying." Can't differentiate between two teachers with similar mustaches? "You weren't paying attention." Didn't hear the directions because there was too much background noise? Tough shit. "These other kids all heard the directions, so why didn't you? I don't want to hear any excuses." When parents and teachers said things like this to me, they were denying and dismissing my disabilities. There was just one problem that prevents me from automatically slapping on the "ableist" judgment: practically nobody was aware of autism, prosopagnosia, and auditory processing disorder back then. Of the three, auditory processing disorder was the only condition that I was diagnosed with as a kid.

While the above scenarios are definitely ableist, I strongly believe that applying this label is contingent upon whether the person passing these judgments is aware of the existence of these invisible disabilities. A teacher today would most certainly be educated on them, and if they still displayed the same attitude, it would be appropriate to call their attitudes ableist. Teachers in the '80s and '90s? Ignorant perhaps (in a "I don't know anything about astrophysics" kind of way, not in a Donald Trump kind of way). And in some cases, assholes, because on what planet is it okay to tell a child that they aren't trying?

I let my parents and teachers off the hook somewhat because the issue was largely that my disabilities were unknown and unidentified. As I noted, auditory processing disorder was the exception to this. I was diagnosed at age eight, and every year before school started, my mother told all my teachers that I needed to sit in front of the room so that I could more easily process the directions. Usually my teachers cooperated, but practically every year there was a teacher who failed to let me do that; whether because they "just forgot" or because they dismissed it as "special treatment", who the hell knows? If it was the latter, that is definitely an ableist attitude. And invariably I would get in trouble with said teacher for "not listening," which possibly reflected an ableist attitude.

Now what about less obvious cases of ableism? Well, part of that involves acknowledging that even a disability isn't always easy to define. We'll unpack that next week. Stay tuned.

Frustration, Anxiety, and Tension Part 1: You're Not Trying

On YouTube I found an illuminating interview with special-needs educator Richard Lavoie. He recalls a time in the 1970s in which he was working as a teacher at a boarding school where he also tutored a fourteen-year-old boy named Craig who had severe learning disabilities involving reading and writing. One day, Lavoie asked Craig to write a story about his dog for a homework assignment. Craig turned in the essay the next day, and the day after he showed up early to his class to wait for Lavoie. He had worked so hard, spending the evening meticulously proofreading his work while his classmates were out playing basketball, that he was sure it was “perfect” and that his teacher’s feedback would reflect that. 

But Craig’s essay was so rife with spelling and grammatical errors that there was more of Lavoie’s writing—in red pencil—than Craig’s. 

I can completely relate to the unbelievable pain, disappointment, and frustration that Craig must have felt when Lavoie handed the essay back to him. Not because of any verbal learning difficulty I had—teachers often were impressed with my writing abilities—but because of the sheer agony I often felt when I worked hard to overcome an issue that was related to then-undiagnosed autism. Often, parents, teachers, and peers would identify a social faux pas that I continually exhibited. I would work on it, feel immensely proud of myself when I thought that I had overcome it, and then find out that something I did had pissed off everybody in the room. Sometimes what I had done was related to whatever issue I had been working on. Sometimes it was something completely different that would never have occurred to me would be seen as problematic. I felt like that no matter what I did, no matter how hard I tried, it was not good enough, that there was always something I was missing—and that I had nobody to blame but myself. 

Fortunately, Craig’s learning disability was well-understood by some educators in the 1970s; at the very least, Lavoie was one of them, and he knew better than to tell Craig, “You’re not trying” and realized that Craig’s struggles were largely beyond his control. Unfortunately, in the 1980s, 1990s, and well into the 2000s, autism—and the social disabilities that come with it—were not understood at all. Autism as a “spectrum” was largely unknown in those days and not something one would dream of diagnosing an honors student—let alone a female honors student—with. Any social faux pas that I committed was potentially seen as intentional, indicative of poor upbringing, my resistance to learn from mistakes, and sometimes even that I was a bad person.

Often, it was my own parents who told me “You’re not trying.” This is not reflective of them being ignorant about “invisible” disabilities in general but rather the prevailing ignorance about social disabilities—autism—throughout the era I grew up in. I struggled with math, and almost every night my father had to help me with my homework. Dad never would have dreamed of telling me, “I don’t see you trying” in that context. He and Mom, however, sometimes said that exact same thing when I made a social mistake. If I told them I was trying, they said, “You need to try harder.”

They had no idea how hard I was trying. 

One time, during my senior year of high school, Dad even said, “You’re not done” in relation to my efforts to improve myself, further cementing my perception that no matter what I did I would miss the mark. Additionally, I felt that missing the mark was the result of not just a failing on my part, but a moral failing. There were many times in my life where I hated myself, where I felt I was a horrible person who violated other people in egregious ways, rather than that I was just socially awkward. 

Lavoie’s experience with Craig inspired him to do a workshop for teachers, using techniques that convincingly simulated the learning disabled-experience for them. In 1988, at the time that it was made, there were still teachers accusing kids of not trying and telling them to “try harder.” There was even the ignorant perception that these kids were deliberately making the teachers’ lives difficult, just like many people in my life thought I was deliberately making their lives difficult. I can only imagine what kids with severe academic learning disabilities thought of themselves if they grew up in an era in which their needs were not understood. 

I will say this though—never ever tell someone, kid or adult, that they are “not trying.” Just listen. And while you’re listening, don’t tell them that you know exactly how they feel unless you truly have had a comparable experience. Lavoie told Craig, “I know exactly how you feel” after Craig cried over his failed essay—and he admitted it was the stupidest thing he could have said to him. I also realize that I might be guilty of doing the same thing when I compare my feelings of inadequacy to Craig’s. I want to clarify by saying that I relate in terms of that the emotions are similar. But just like I’ll never truly understand what it’s like to have severe writing problems, Craig will probably never truly understand what it’s like to be autistic. 

Neither did a particular teacher I had in high school. Stay tuned.

Listen to What Your Kids are Trying to Tell You

I was listening to a podcast about transgender children. The mother of a MTF transgender child was on the show, and another person asked her if she and her husband had had difficulty accepting the reality of their child claiming that "he" was really a girl. The mother said that it was not terribly difficult for her and her husband because her father was dyslexic. What does one have to do with the other? Her father is in his seventies; he grew up in an era when dyslexia was unheard of. When he tried to explain that reading was tough for him, the teachers wouldn't have any of it. They told him that he was lazy and wasn't trying. He tried to tell the teachers what was going on in his head-- that letters and numbers were confusing for him-- but they dismissed his explanations as mere excuses. Transgender children face similar obstacles: a natal boy tries to tell "his" mother that "he" is actually a girl (or vice-versa). Many parents respond to this by telling the child that "he" is wrong and doesn't know what "he" is talking about. Drawing on the father's experiences with trying to explain what was going through his head when he had a hard time reading, these parents gave their child the benefit of the doubt that the woman's father never had. The transgender child's parents said, "Who are we to say what's going on in our child's brain?"

As you might guess, I draw a similar parallel to my experiences with Asperger's Syndrome. To navigate the social world growing up, I had to use my cognitive faculties to accomplish social tasks that most other people do intuitively. As you also might have guessed, many parents and teachers told me that I was not trying. I can recall many instances of, as a child, being at social gatherings with my parents and one (or both) of them pulling me aside and telling me, "You're acting inappropriate", "You're too loud", or something else to that effect. Oftentimes I had no idea what I was doing "wrong". After the social gatherings, my mother would often remark, "You were very immature." There were many times at these social gatherings when I would be reduced to tears, frustrated and unable to understand why people (not just my parents) were reacting to me the way they were. Most parents assume they can bring their kids to social gatherings without incident, but whether or not such a gathering would go over smoothly for me was a crapshoot. 

These memories continue to haunt me in very vivid dreams, and sometimes I even wake up screaming and crying. In these dreams, I am that ten-year-old kid again, insisting that I'm trying to be "good" only to hear my parents say, "Well, I don't see you trying." My attempts to explain what was going on in my head were dismissed, and that hurt like hell. Another mantra I had to deal with often started with the words, "If you would just... [insert action here]." Okay. Tell the transgender child, "If you would just learn to be a boy" or the dyslexic child, "If you would just learn to read." I assure you that these words can cut deep. It's the verbal equivalent of somebody slowly plunging a rusty knife into your side.

Parents, please listen to your kids. You may be thirty or so years older than them, but sometimes they not only know more than you think, but in some cases more than you.

Are You SURE You Have Asperger's Syndrome?

Being the highest of the high-functioning on the autism spectrum is a double-edged sword. On one hand, it's great that in adulthood that my symptoms are sub-clinical and I can finally relax and not worry that every little thing I do is going to set people off due to a miscommunication. I make friends with ease and I am very personable. On the other hand, because of these skills that I now have, lots of people who I meet for the first time don't believe me when I say that I have Asperger's syndrome. Yes, it's true that I diagnosed myself initially before seeking confirmation from a therapist, but I'm not the type of person that sees one little trait that vaguely fits my personality and makes a diagnosis. It is true, sometimes people do that. "Oh, I'm fascinated with numbers. I must have Asperger's syndrome," someone might say, not thinking about the label that they're misapplying to themselves. But I'm not like that.

People who knew me from summer camp or from school, with whom I reunite on Facebook, often say this when I tell them I have Asperger's syndrome: "That explains a lot." And it does! People who I'm just getting to know today can't see that I have it because I've compensated for most of the problems that come with it. Just because they can't see the struggles and the pain I endured while trying to navigate the social world throughout the vast majority of my life (a lot of it was trial and error) does not mean that these things didn't happen. Asperger's syndrome is the only logical explanation for the social problems I had throughout my childhood and part of my adulthood. Some people become sub-clinical in adulthood (AS advocate Michael John Carley comes to mind-- I used to go to his support group and I never would have guessed he has AS). A child may have a dyslexia that makes reading a headache, but upon adulthood that same person may read with near total fluency. On the other hand, some dyslexic people rely on audiobooks in adulthood. 

Like dyslexia, autism is a spectrum. And I think the highest functioning people have it the hardest growing up because they appear to be "normal." That is, "normal" kids who are stubborn, uncooperative, ill-mannered, rude, etc. When a child fits the stereotypical AS traits-- talking about trains, flapping hands, taking idiomatic expressions literally-- then people may see the AS more clearly and be more accommodating. Let's raise consciousness. For those of you who are the highest of the high-functioning, I'd like to hear from you.