Thursday, April 14, 2022

Clinical Detachment = Lack of Empathy?

One tired myth that I have encountered repeatedly is that autistic people lack empathy. This seems to be fueled by the perception that when many of us hear about a tragedy or witness a disturbing scene, we don't broadcast the expected visceral reaction. 

Consider the following hypothetical scenario: in the days following 9/11, 15-year-old Emma's parents watched in horror as news networks repeatedly aired footage of the second plane hitting the South Tower. Emma's mother broke down crying. Emma's father cringed and said, "I can't watch this anymore," and left the room. Emma, however, said nothing. Her concerned mother turned to her and said, "Emma, isn't what happened just awful?" Emma responded with a slight shrug. Her mother was horrified at this reaction. In 2001, autism wasn't as well-understood as it is now, and Emma's shrug might have been perceived as a cold, unempathetic, "All those people died? Who cares?"

There are a few possibilities as to what actually was going through Emma's mind: Sure, she could have genuinely not cared about the deaths of 3000 people, but if that were the case, then that is not autism-related and stems from a separate issue. Another possibility is one that I hear from a lot of people in the autism community: that when something this intense happens, they are so overwhelmed with emotion that they don't have the presence of mind to respond in ways that people expect. They just shut down, and others perceive this reaction is one devoid of empathy. 

There is one other possibility that I'd like to explore in depth, and that is that the person is experiencing clinical detachment. Before I continue, I want to emphasize that responding with clinical detachment is not the same as not caring. Rather, it is taking an analytical approach to the situation. While Emma might not have had a visceral reaction to the idea of thousands of people dying in a terrorist attack, she still thought it was horrible and wanted to understand why it happened. What would possess someone not only to kill thousands of people but kill oneself in the process? What would make someone literally throw their life away in the name of an ideology and take others down with them? In fact, Emma might have even gone online to every news site to learn about the hijackers and Al-Qaida. She would have done so not amid tears, but amid a thirst for knowledge and understanding. Unfortunately, in the age that this story takes place in, Emma's mother might have thought that she had some kind of morbid fascination with death and took perverse joy in tragedy.

Fortunately, in the years since 9/11, there has been an impressive growth in societal understanding of autism. However, I want to point out that this sort of clinical detachment that Emma experienced in my example is not unique to people on the spectrum. In that particular context, possibly, but neurotypical people demonstrate clinical detachment in all sorts of contexts. The difference is nobody freaks out about it because neurotypical people aren't already perceived as "different". And like it or not, a certain amount of clinical detachment is absolutely necessary for all sorts of tasks. 

It's an inconvenient truth that people who research 9/11-- or Columbine, or the Holocaust, or the Crusades, or some other violent episode of world history-- have to do so with clinical detachment. And I'm glad that some people are able to do it, otherwise none of this important research would get done because researchers would be too busy dealing with their emotions. Clinical detachment is also necessary when performing surgery or conducting an autopsy. It doesn't mean that the surgeon doesn't care about the patient or that the pathologist is glad that the person they're examining is dead. It just means that they don't experience the emotions of empathy in an overwhelming or visceral way. And I'm glad they don't. Could you imagine a heart surgeon doing a bypass operation while thinking, "Oh my God, this poor man! If he dies, he's going to leave behind a wife and kids. I'm crying just thinking about it!" The surgeon wouldn't be able to concentrate on the task. 

I actually wonder if the ability to deal with looking at "gross" images, whether or not they are in the context of a tragedy, is correlated with the ability to experience disturbing images with clinical detachment, or at least without having a significant visceral reaction. I see an interesting range of differences of reactions in my own family. My dad and I can watch medical documentaries that involve graphic surgeries without even flinching. Not only that, we find them interesting. And I will even admit that I have a collection of "creepy medical photos"-- organs during surgery, microscopic photos of scabs, etc.-- that I pulled off the Internet. I showed some of them to Dad and he thought they were interesting. He also thought it was interesting when I showed him a picture of YouTube celebrity Matt Dillahunty's heart that his surgeons took photos of (at his request) when he had a triple bypass. 

My mom and brother, on the other hand? As soon as I showed them the picture of Matt Dillahunty's heart, both cringed. Neither of them can watch medical documentaries like Dad and I can; they just can't stand the sight of exposed organs and knives cutting into flesh. Here's what's interesting that supports my hypothesis about the correlation between the ability to watch surgeries and look at disturbing images-- but only partially: Dad and I can both watch the footage of the second plane hitting the South Tower on 9/11 without cringing. My mother, predictably, cannot. It's just too emotionally painful for her. My brother? He can watch it. Go figure.

And it isn't that Dad and I don't have our cutoff points. We do. I get an uncomfortable chill when I see footage of people jumping to their deaths from the Twin Towers on 9/11. I'm not sure what, if any, visceral reaction Dad has. But I do know that he has a seemingly-arbitrary hangup about amputations. I have a very dark sense of humor, and I once made a joke about a limb amputation (I don't remember what the joke was and what the context was in which I told it). Dad cringed, saying he couldn't even listen to me joke about it. I'm not sure if he can watch limb amputation surgery in a medical documentary, or if it's specifically violent or accidental amputation that he has a hangup with. I found recently, too, that I have a hangup with violent amputation. I was watching the psychological thriller Netflix series You, and in one scene, the main character, Joe, is assaulted and one of his fingers is cut off. In another scene, he cuts off his own toes as part of a plan to fake his own death. In both scenes, I surprised myself by cringing in a very visceral way. I actually curled my fingers and toes, as if recoiling from knives. Watching both scenes was a very unpleasant experience, and I just wanted them to end!

I think what it comes down to is that human emotion exists on a spectrum, and reactions to extreme imagery will range from clinical detachment (with a few exceptions, as with Dad and me) to pronounced visceral reactions (as with Mom and, to a lesser extent, my brother). I really feel that it's important to keep in mind that this range is present through all of humanity, autistic or not. It's just that when an autistic person-- particularly a girl or woman, in my experience-- doesn't display a pronounced reaction to certain images, people read deeply into it. It is here that I encourage you to check your own biases. Additionally, I strongly suspect that many neurotypical people fake certain visceral reactions because they know that this is what is expected of them. And I'm sure you know that we on the spectrum are often terrible at such fakery.

Bottom line, a certain level of clinical detachment is necessary in some contexts-- and humanity is all the richer and better for it.

Saturday, February 5, 2022

Language Wars: Autism vs. Asperger's, Identity-First vs. Person-First

Well, it's been a couple months since my last post, and you might notice that there is a little change in my blog. It no longer is titled Eccentrics United: An Asperger's Syndrome Blog but is now Eccentrics United: An Autism Blog. My corresponding Twitter name (@eccentricsunite) is no longer "Julie the Aspie" but "Julie the Eccentric" (I chose not to change it to "Julie the Autistic" because it just sounded too silly) I implemented this change for a few reasons: 

First, a lot of people who were/would have been diagnosed with Asperger's Syndrome when it was still in the DSM (as opposed to just "autism spectrum") prefer "autism" for themselves. I am hoping this change is more inclusive for said people. After all, all people with Asperger's Syndrome are autistic. It is not, however, a statement of one term being better than the other. Whether you prefer "autism" or "Asperger's" for yourself, I hope that this blog resonates with you. 

A lot of people hate the term Asperger's Syndrome because it potentially serves as a functioning label and because it was named after a Nazi, Hans Asperger. However, the aforementioned have nothing to do why I made this change. Functioning labels are a complex issue (and one I hope to discuss eventually, but not in this particular post) and lots of conditions are named after terrible people. There is no reason why the condition named after Hans Asperger should be singled out.  

The most important reason I made this change is simply because over the past couple years I have gravitated towards describing myself by saying "I am autistic" or "I am on the autism spectrum" instead of "I have Asperger's Syndrome." My personal preference simply has to do with the grammatical imperative that comes with describing Asperger's Syndrome vs. autism, the latter which is more flexible. With Asperger's, you have to say "I have Asperger's Syndrome." With autism, you can say, "I am autistic" or "I have autism." I strongly prefer identity-first language ("I am autistic", "I am an autistic person") over person-first language ("I have autism", "I am a person with autism"), and Asperger's Syndrome does not grammatically allow it. However, I would still prefer Asperger's Syndrome for myself if there was a way to manipulate it into identity-first language. As far as I know, the majority of us prefer identity-first language for ourselves, but if you are someone on the spectrum who is more comfortable with person-first language, then that's absolutely fine! 

I would like to note, however, that all past blog posts where I talk about "Asperger's Syndrome" remain as they were. No retconning on this blog! 

I have made it clear that my preference is for identity-first language. And that is what it is: a personal preference. When neurotypical people use person-first, I generally correct them and tell them that most of us prefer identity-first. They are often flabbergasted, thinking that "person first" is what they're "supposed" to say. That is, after all, what they have heard from well-meaning but tragically misguided neurotypical parents and teachers! The reason many of us prefer identity first is because we feel that autism is an intrinsic part of who we are. We would never say "a person with femaleness" or "a person with gayness", for example. You really can't separate a person from autism, in my opinion. I don't think we are neurotypical people hiding under autism, waiting to be "fixed". 

Am I overthinking this? Possibly. But it is worth thinking about and discussing. It isn't the hill I am going to die on, however. If I correct someone and they continue to use person-first language out of habit, then I let it go. When my mother recently said "people with autism", I didn't bother correcting her because context matters: I knew that it just happened to be what came out of her mouth, not something she said because other people told her to. If most neurotypical people who used person-first did so just because it happened to be what came out of their mouths, it wouldn't bother me. But at the end of the day, I don't want to get hung up on language preference when there are more important things to worry about it.

Unfortunately, I have found that many of us in the autism community get hung up on language use to the point of absurdity. Instead of accepting that some of us use "Asperger's" or "person with autism" for ourselves, people dogpile on and accuse each other of oppression for using a functioning label and internalized ableism for using person-first language. To be quite frank, I am really sick to death of this nonsense. The autism community is eating itself alive with this word policing. Sadly, I got kicked out of a group on Facebook where autistic people answer parents' questions. Why was I kicked out? Because I sent a mother to my blog posts, which I thought would be helpful. However, the admins viewed one of the posts, which had usage of the word "Asperger's" and discussed functioning labels as a complex issue, as "problematic." The irony? It was part of my recent "Is It Ableism?" series.

A friendly reminder: Can We Stop Alienating Each Other?

Sunday, November 14, 2021


I've been thinking lately about how how often society gets things ass-backwards.

Everyday people, such as parents, teachers, and peers come to conclusions about invisible differences and disabilities for ridiculous-- sometimes backwards-- reasons. That is, they mistake genetics for environment, or even effect for cause. Even psychologists and other experts have done it as well. 

Mistaking Genetics for Environment

In the earlier part of the 20th century, psychologists "blamed" autism on "refrigerator parents", particularly mothers. These mothers who were perceived as cold and distant were implicated in making their children cold and distant-- a description that is, of course, rooted in profound ignorance and narrow-mindedness of what is considered "normal." 

We now know that autism has a strong genetic component, and that whatever traits these kids might have are not the result of failing to bond with their parents. In fact, the bond between autistic kids and their parents might be strong. It's just that autistic parents tend to produce autistic kids-- because of genetics. And putting most or all of the blame of the mother is clearly rooted in sexism. Women in particular are expected to be what I call a "charismatic, eight-armed woman", happily tending to multiple people's needs. In my experience, people don't expect this of men. So if a woman is not acting like the social octopus that people expect, she might be more likely to be seen as "cold" and "distant"-- the mythological "refrigerator mother." Even if the father has the same traits, he might not be labeled as a "refrigerator parent."

Mistaking Effect for Cause

I also remember reading somewhere* about the infamous "distant fathers" and "overbearing mothers" of effeminate boys who grew up to be gay. Back when psychologists pathologized homosexuality, many believed that the father was not spending enough time with his son and the mother was spending too much time with him, thus making these boys more effeminate. There have been many cases of "distant fathers" and "overbearing mothers" in the cases of effeminate young boys who grew up to be gay (though I suspect this is less true today), but it is not the cause but the effect. If I remember what I read correctly, it seems that these fathers counted on raising a son with whom they'd bond over football or mechanics, but instead had a son who liked to play with dolls. In a world that puts strong emphasis on masculinity in boys and men, disappointed fathers didn't know how to bond with their son and ended up not spending much time with them. The mothers ended up essentially filling the role of both parents.

I have experience with the ass-backwards mistaking effect for cause in my own life. When I was growing up, I hardly watched anything that was animated until I saw the first two Back to the Future films at age nine. Even then, I still preferred watching animation and that is what I almost always settled on while flipping through the channels. Between my social difficulties and my problems comprehending some live-action movies and plays-- that is, to the point where sometimes I literally had no idea what the story was about-- my parents (especially my mother) blamed my preference for animation. They believed that I was not challenging my brain enough and so my comprehension of social situations and movies was underdeveloped.

They got it ass-backwards.

As it turns out, many people on the autism spectrum, as well as people with prosopagnosia-- kids and adults-- have a strong preference for animation. Why? Well, it's simple. You get more information about a character and his motivation when he is a brightly-colored individual who makes broad gestures and is easier to differentiate from others. This is especially critical when you, like me, are a prosopagnosiac in addition to being autistic and have a hard time learning new faces. To someone on the autism spectrum-- especially if that person has prosopagnosia-- characters in live-action movies might seem like faceless naked mole rats in drab clothing. Is it any wonder then that Back to the Future was what made me more open to watching live-action movies? Doc Brown, with his wild hair, brightly colored clothing, and broad gestures is much easier to read than many movie characters.

So the short answer is that my preference for animation was the result, rather than the cause, of my social problems and difficulties following certain movies. 

I think this type of ass-backwards reasoning is finally starting to change and is being seen for the nonsense that it is. Please keep this in mind when trying to understand your autistic kids-- or adult friends.

If anybody has a similar story about this type of ass-backwards reasoning, particularly as it relates to autism, let me know in the comments!

*I thought it was in Judith Rich Harris's The Nurture Assumption, but I can't seem to find the reference in the book. Maybe it was in something that Steven Pinker wrote. If anybody knows what I'm talking about, please leave a comment.

Sunday, November 7, 2021

Is It Ableism? Part 12: It's Complicated

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"

We have unpacked a lot about ableism in this series, and it's only natural that it took a large number of posts to do so. It is a very broad topic with a lot that deserves examination. There is much more I wish I could have covered: For example, what's the difference between a variation in brain function and a disability in brain function? Is it all a matter of opinion? Should it even be defined? And are there limits to accommodation, let alone "reasonable" accommodation? These are endless conversations, and maybe I will tackle them sometime. However, I hope that I managed to elucidate a number of other issues that I feel are overlooked when discussing ableism. I also hope that I have raised your consciousness in the kinds of things that could be classified as ableist. However, it is here that I would like to urge you to be cautious when labeling attitudes or actions of people as ableist-- let alone people themselves as ableist.

Ableism is a complicated, nuanced issue, whether it's about how it relates to autistic people or people with other disabilities. As I've alluded to in this series-- and in a recent post, "Can We Stop Alienating Each Other?"-- I feel that "ableist" and "ableism" are words that, while they have their place, are unfortunately overused to the point where they feel more like a thought-terminating cliché than a complex concept worth examining. I see this a lot in autism groups on Facebook and in social justice circles in general. What has become apparent lately is that there seems to be a kind of orthodoxy in these groups. That is, there has to be a universally-agreed-upon definition of what constitutes ableism that cannot be questioned unless that person wants to be stamped with a scarlet letter of sorts.

I see accusations of ableism hurled around when, God forbid, someone in an autism group says that they prefer the word "Asperger's" instead of autism to describe themselves. One reason this upsets so many people is that "Asperger's" is a word used to describe someone on the autism spectrum who is considered "high functioning." People who object to the use of "Asperger's" often tell the person that they feel superior to "lower-functioning" autistic people, whom they want to distance themselves from. They accuse the person of ableism, internalized ableism, and all-around bigotry. Whether or not there is any truth to this is a discussion worth having, but it's not going to work unless the discussion will be civil.

Right now I can hear objections to my comments about "civil discussion" in the form of accusations of ableism: What about people who have been traumatized when they were classified as "low functioning" and therefore "hopeless"? One or more of those people might have PTSD and cannot help but have an angry response. How dare I demand a particular ability that they might not have? 

Again, a discussion worth having... and it's important to note that not everybody has experienced that kind of trauma or, if they have, they might not have PTSD from it. People who can handle the discussion should have it, but the people who can't might do well to turn off notifications for the thread. Is that an ableist statement? 

What about the common accusations of internalized ableism?

Is it internalized ableism for me to be glad I've never had sensory issues and to wish I didn't have prosopagnosia? Is it internalized ableism for me to say I'm glad I don't need to use a wheelchair? What about someone who needs a wheelchair and wishes they didn't? Years ago, my mom, a retired teacher, told me a story about how one of her students, a wheelchair user, wrote about how he often had dreams about being able to run down a football field. He was always devastated when he woke up from these dreams, as he didn't know what it was like to be able to run, or even walk. Is he guilty of internalized ableism? I think not. But if you think so, then probably every one of us-- including people with disabilities--  is guilty of internalized ableism on some level. And at that point, the term ceases to have meaning. In any case, in none of these situations am I-- or my mom's former student-- making declarations of inferiority to people without these disabilities. We just prefer we didn't have them.

I have even heard stories about people who have confessed to being worried that some activity they do will lead to an accident that will make them need a wheelchair. Then they feel guilty because they think it's a form of internalized ableism. I'm sorry, but that's absolutely ridiculous. It's nice to be able to walk. What's ableism is looking down on people who can't!

What if the late astrophysicist Stephen Hawking (who likely wished he hadn't become paralyzed and had to use a wheelchair, but that's a different point than the one I'm about to make), had gotten into an accident that affected his cognitive function? Let's say his nonverbal IQ score, which was apparently an unbelievable 160, dropped to 102. IQ isn't everything, but 102 is not enough to handle something as intellectually demanding as astrophysics. When I was a kid, my nonverbal IQ score was actually measured at 102 (I have nonverbal learning disability, like many of us on the spectrum). And guess what? I wouldn't blame Hawking for being devastated if this happened to him, and I wouldn't consider it ableism, internalized or otherwise. Because you know what? It sucks to be able to lose the ability to do something, especially if that ability was important to you.

There are some truths that we can't pretend don't exist. Like it or not, every interaction that we have with one another assumes some level of ability. By writing this blog post, I am assuming that you can see and that you can read. Or, at least I'm assuming that if you can't do one or both that someone-- or something, like the voice function on your device-- is reading it to you. I'm also assuming that you know how to turn on your device. I also assume that your reading comprehension is within typical or near-typical limits. Otherwise, you might not be able to understand the blog post. Is it ableist for me to make these assumptions?

Maybe in the Facebook groups where people shout "ableism!" like it's going out of style, they're also assuming that everybody in the group can read. How do they know there isn't someone in the group who can't read for some reason and is just there because they like looking at the color scheme in the group, and just being there makes them feel like they belong? Nobody knows for certain that this isn't happening.

We may be wrong sometimes when we make assumptions about other people's abilities, and that's okay as long as we are open to learning. For instance, someone might have a knee-jerk reaction when witnessing a ten-year-old having a meltdown in the store because his parents won't buy him the toy he wanted. She might assume that the kid is spoiled and has parents who normally cater to his every whim. She might turn to her friend, an adult on the autism spectrum, and say, "That kid is throwing a tantrum! He wasn't brought up right!" The friend might say, "That's possible-- or it could be that he's autistic. Maybe he's having a meltdown because he's been overly invested in this toy for months, and he's devastated now that he is learning that he can't get it. If you think this is hard for you to witness, think how hard it is for him to experience it." If she is open to what her friend tells her and is willing to learn from her insight, then that's a good thing!

What about ableist language? I've heard arguments that saying, "This movie is stupid," is ableist because of the word "stupid." I don't think so, because, as I stated in Part 8, this is a word that is used to describe actions or attitudes when a person with average or above average intelligence was doing them clearly knew better-- or, in the case of a movie, the word just means it was badly written. It's not a medical term, and most people understand that it's lousy to use it to describe someone with an intellectual disability. "Retarded," however, is a different matter, because it has been a medical term in living memory. 

There is no limit to what we could consider ableist. Maybe it's ableist to not drink during pregnancy because the alcohol could cause the baby to have an intellectual disability. Hell, by extension it means that the mother is ableist for valuing intelligence and wanting her child to not struggle in school. You see how ridiculous this sounds? 

And one more thing that I want to point out is that none of us have 20/20 foresight. There are many things that parents, teachers, camp counselors, and peers said to me in the '90s that would be considered ableist with a 21st-century awareness and understanding of autism and other conditions. As I've said, I believe that the appropriate application of the label of "ableism" is contingent upon the person knowing that a disability is present, and therefore I have to let some of these people off the hook. We as a society are learning more, and this is a sign of progress. There is no doubt in my mind that we are-- hell, I am-- saying things today that will be considered ableist in twenty years in light of a disability that hasn't been identified yet.

I am open to having my mind changed on this post-- hell, on all of the posts in this series. I might look back at this series in a month, a year, a decade and realize that there are holes in my arguments and that maybe there would be a better word than "ableism" to describe the overarching theme of this series. And just like with the book that I talked about in Part 4, I might end up cringing at some of what I have written. 

People evolve and their perceptions evolve, and we have to let them. 

Is It Ableism? Part 11: Advocating for Your Needs

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"

As always, names changed.

Well, we're down to the wire. In our previous installment, I discussed how everybody-- regardless of neurological profile, disability, etc.-- needs to have their comfort zones challenged. The caveat, of course, is that people around us need to understand and respect that there are going to be limits to these challenges. Sometimes, we need to advocate for our needs when others don't seem to understand.

On the day after Thanksgiving in 2014, I was out for breakfast with my extended family. My cousin announced that she was pregnant with her first child. However, her aunt hadn't shown up for breakfast yet and we were told to wait until she got there before making the "official" announcement (I think I hadn't heard that bit of instruction... I don't recall). When my cousin's aunt showed up, my cousin once again announced she was pregnant and acted like this was the first time she revealed it to everybody. I said something about how we had been talking about it before, and my cousin put her head in her hands and said, "Oh, Julie..." in exasperation. 

Just a couple years before, had the same situation happened, I might have apologized and we would have laughed it off. However, I was still reeling from having recently been fired from a library in Massachusetts and, just months before that, a library in Maine. Before working at these two libraries, I had thought that I was long past being fired from jobs over social faux pas (pases?), but after the problems at the libraries, for the first time in years, I was incredibly self-conscious about how I was perceived and if I did things "wrong." I was chronically unemployed, and I thought to myself, "If I did this at a business meeting or something I would be fired on the spot." I felt incredibly stupid and that no matter what I did it wasn't good enough, and how dare I make mistakes?

Without a word, I got up from the table and left the restaurant. I went outside to take a walk so I could calm down and gather my thoughts. But at that moment, I was filled with rage at myself. I thought something along the lines of, "You fucking asshole. You ruined your cousin's important moment and humiliated her aunt in front of everybody. You are just beyond callous, aren't you? You never learn from your mistakes and you just keep fucking up."

Of course, my cousin kept trying to follow me, but I ignored her. I did find out later that after I walked out my cousin's aunt looked at my mom in confusion and said something like, "What was that about?" Mom, who at long last was beginning to understand the idea of me having a proverbial raw exposed nerve and reacting not to a mild stimulus but a series of things, said, "You don't understand," and then explained it to her. Unfortunately, when Dad found me, he was a little pissed off. He told me to grow up and go back inside. 

A similar, frustrating incident happened last year during a Zoom call from my cousin's house in Providence to my parents' and my cousins' parents. I was at my cousin's house instead of at my parents' for Chanukah/Christmas because of the pandemic. Without regurgitating the entire story, I will say that I once again removed myself from a situation that became upsetting. I went upstairs to the guest room to calm down. I texted my mother and told her to call me after the Zoom call was over. When I got on the phone with her, I told her, "I'm not having one of these big Kumbaya Zoom calls anymore. If you want to have them with the rest of the family, go ahead. But I won't be there. I don't like them, they're not enjoyable for me, and they feel like a chore. It's you and Aunt Janice doing all the talking and whenever I try to get a word in edgewise, people talk over me." We had had several large group Zoom calls since the beginning of the pandemic, and while they didn't upset me like the Christmas one did, they largely did feel like a chore and weren't enjoyable. Mom said she understood and respected my decision.

I have said in previous blog posts that my meltdowns (or pre-meltdowns, in these stories?) are largely under control, but when they do happen it's almost exclusively around family. This is true. Had the Thanksgiving 2014 episode happened among another group of people, I might have felt a little embarrassed but not felt it as intensely as I did that day. I wouldn't have felt the need to get up and leave. On Christmas 2020, had I been in a Zoom call with the same number of people, but people who weren't my family, I would have shrugged everything off. In fact, in spring of 2020 I participated in a Zoom call with about ten other people from the camp in Michigan I worked at in the early 2000s. There was a lot of people talking over each other, and it didn't feel personal or anxiety-inducing. Why? Context is important. Unfortunately, even the most well-meaning of family can push my buttons, and this has largely to do with the fact that they've known me for so long and that, in some ways, they sometimes still have a perception of me of when I was a kid that hasn't completely changed. In the Zoom call for example, even if those who were talking over me weren't doing it on purpose (and they probably weren't), there's still a lot of baggage that makes it feel personal. When I was a kid, my parents and brother sometimes deliberately ignored me if I made some stupid wisecrack or if they thought I was talking about something that wasn't "age appropriate", for example. The talking over me during the Zoom call felt like a throwback to that. I've seen a lot of adults on the autism spectrum make similar comments about baggage with their family who is, in most cases, very well-meaning, but took decades to finally understand them.

A number of therapists I have talked to over the past fifteen years or so told me that I need to tell my parents and others that they need to just let me remove myself from situations like the aforementioned so I can calm down. They need to let go of the idea that I have to be there to show how "mature" I am. They need to understand that I am engaging in self-care and also preventing a possible meltdown. Unfortunately, it's a hard lesson to learn because people automatically think that when somebody gets up to walk away from a humiliating or otherwise frustrating situation, it's an implicit invitation to follow. With kids it's seen as a ploy for attention, to get others to follow and reassure them... and with adults... well, I don't know. They probably slap the "immature" label on it.

Autistic people (and others-- let's be real; this probably doesn't happen to just us) need to be allowed to leave a situation, whether it's for reasons I just related or whether it has to do with sensory overload that some of my brethren describe. Or for a variety of other reasons. Bottom line: We might have "unusual" needs, but they are real, and you have to listen with an open mind when we tell you what they are.

Whew! In eleven blog posts we've covered so much ground. We'll wrap it all up in the next and final post.

Saturday, November 6, 2021

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"

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.***

*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 9: Unintentional Gaslighting

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"

As always, names are changed.

In Part 7, I talked about how autistic people are often infantilized. In Part 8, I discussed how the actions of autistic people-- particularly meltdowns-- are dismissed as "immature." Meltdowns are often the result of a cascade of overwhelming and complex emotions and are not a question of maturity; how can it be when it's something that most people don't deal with at any age? 

Many of us on the autism spectrum have commented on having had our emotions, experiences, and perceptions invalidated, either when growing up, as adults, or both. At some point in the past few years, I began referring to these attitudes from other people as "unintentional gaslighting." As it turns out, many other people have independently come up with this term, and now it is commonly used in autism communities. So what is it exactly? Well, let's start by going over the definition of "gaslighting".

"Gaslighting" is when someone purposely makes another person doubt their own perception of reality, and it is often used in abusive relationships. Here's an extreme example where an emotionally abusive husband, Steven, might gaslight his wife, Holly: Holly comes home one day to see Steve making out with another woman. Holly calls out Steve for cheating on her. However, after the other woman goes home, Steve assures Holly that the woman was just a client, but that she stopped breathing because of some medical issue and he had to give her CPR. Steve might even say, "I don't know where you come up with this stuff. You let your imagination run away with you and then you overreact. You'd better stop it if you want this marriage to last." Even though Holly knows what she saw, Steve has a way of manipulating her into doubting even her clearest observations. She is eventually convinced that her imagination did run away with her, and she was just overreacting.

So what is unintentional gaslighting? It's exactly what it sounds like: making people doubt their own perception of reality, but for well-intentioned reasons. It often happens to autistic people simply because they are autistic. Because we interact with the world differently, and occasionally misinterpret situations, people often perceive us as being largely out of touch with reality, needing our neurotypical counterparts to explain even the most basic things to us. Even if we know exactly what we just experienced, family, friends, and others will tell us we were wrong, and we eventually begin to doubt our own perceptions. It feels like gaslighting, but the behavior is well-meaning and unintentional. That doesn't make it any less frustrating, however. 

Here's an example from my own life:  

In the spring of 1995, at age 14, I had been seeing my therapist, Dr. Klein, for about three years. I eventually decided to stop seeing him because it was becoming abundantly clear that he was unable to help, and he just didn't understand me. During our last session, he asked if I wanted to see my diagnosis. I thought, "After three years, he finally knows what this is?" Dr. Klein handed me a 3x5 index card, on which he had written, "Difficulty interacting with peers and adapting to new situations."* To this day, I have no idea what he meant by "difficulty adapting to new situations", seeing as how I tried new things all the time-- I was actually getting ready to go to overnight camp that summer, and that was my idea! The example of unintentional gaslighting comes in at the following exchange, which I have recreated to the best of my memory:

Me: What do you mean "difficulty adjusting to new situations?" I don't have a hard time adjusting to new situations!
Dr. Klein: What about the social problems you have with your peers?
Me: Being made fun of and hit is me having "difficulty adjusting to new situations?"
Dr. Klein: Well, it seems you overreact to things and get into conflicts with other kids far too often.

Oh, my God, where do I even start?

Aside from the obvious victim-blaming (which is another topic for another day), the unintentional gaslighting here was when Dr. Klein told me that I overreacted to situations where other kids bullied me. I had told Dr. Klein dozens of stories about kids spreading rumors about me, humiliating me in front of others, and physically assaulting me; in one case, a girl pinned me to the wall and tried to strangle me because she thought I had been flirting with her boyfriend. My peers were emotionally abusing me, but unfortunately back then bullying wasn't seen as a form of emotional abuse. It was just "part of growing up." And because it happened as often as it did, Dr. Klein obviously came to the conclusion that I was exaggerating and overreacting to the situations I related to him.

When I told my current therapist this story, he was shocked, and told me that even in the 1990s he would have never said something like that to a kid he was working with. Do people-- autistic and neurotypical-- overreact sometimes? Sure. But when the "overreaction" is something that's happening consistently, there's obviously something deeper going on: at best, it means that the person in question suffers from severe anxiety that might have nothing to do with external factors; at worst, things are really as bad as the person says and the anxiety follows. In my case, it was the latter.

Unfortunately, a lot of us on the spectrum have similar stories about such unintentional gaslighting. One that I often hear is from people with sensory issues. They might complain about bright fluorescent lights, only to have friends and family tell them, "Oh, it's not that bad," as if that will make them reconsider how the bright fluorescent lights are affecting them. Well, they are obviously "that bad" to the person with sensory issues!

In a personal "it's not that bad" incident that I experienced, when I was in fifth grade and joining the school band to play the saxophone, my music teacher told us that we were supposed to go into the kindergarten room the next day and pick up our instrument. Even though the room would be filled with little kids, I was anxious about walking into a room with a group of random people to get my saxophone. I expressed my anxiety to my parents, saying something like, "I'm faced with a real problem." Dad sighed in exasperation and said, "Oh, boy, here we go again. Every day it's the same thing." Around that time in my life, Dad often told me that he felt I was "looking for problems" and "making a big deal out of nothing." Well, it obviously wasn't "nothing" to me!**

Telling people they are "making a big deal out of nothing" or "it's not that bad" does not help the situation. Also, why would anybody "look for problems?" As I've said, sure, people can overreact, but if these seemingly "little" things are a big deal to someone-- autistic or not-- there is obviously something bigger going on, especially if there is a pattern of such reactions. I think that we as a society are getting better-- albeit slowly-- at listening and not being dismissive like this. But people need to continue listening and learning that some brains just work differently. They need to do better at validating our experiences even if they don't understand them. If something is "that bad" to someone, accept it and help them work through it to the best of their ability, but also keep in mind that they might not be able to work through it, depending on the person and depending on the issue.

And here I'm going to awkwardly segue into the next installment, which is about challenging one's comfort zones, and any limitations of that. Stay tuned.

*These are symptoms, not a diagnosis!
**Fortunately, the kindergarten room was empty when I went to get my saxophone that day!