Monday, August 29, 2022

The Art of Finding a Therapist

As always, names are changed-- in this case, abbreviations are used for my good therapists, and mischievous nicknames for some pretty bad therapists.

"Dr. L. would have some good advice for me on this," I often say to myself when I am having a difficult moment.

But then I remember that I am no longer working with Dr. L. 

An undisclosed medical condition forced Dr. L. into sudden retirement in June, and after six years of working with him-- the longest I have worked with any therapist-- I found myself having to find someone else.

I have been to several shrinks since age eleven. The past thirty years of on-and-off therapy have taught me some valuable lessons, not the least of which is that finding a good therapist is an art. In a sea of "just okay" and bad shrinks, I have had three terrific ones, including Dr. L. I started working with a new therapist, Dr. P., in June, but I'm considering looking for someone else if something doesn't click in the next couple months. She is nice and open-minded enough, and in the beginning I was feeling optimistic about her. However, I have since begun to feel that things aren't clicking as well as I hoped they would. For one thing, I am not convinced that she is intimately familiar with the nuances of autism, particularly in terms of what it generally looks like in cis women*. For another, I find that she often misses my point. Plus, she will often ask me a question right after I say something that contains the answer that she is looking for. For example, I might tell her that I have known somebody for twenty years, and two seconds later she will ask, "How long have you known this person?" It makes me feel like that she isn't listening, or at least isn't completely processing what I tell her, let alone appreciate where I'm coming from.

What was great about Dr. L. is that he knows what autism looks like, including in cis women*. Unlike an alarming number of the psychological community, he knows it is a varied, colorful, complex, and nuanced spectrum, well beyond the stereotype of train-spotting, hyperliteral, STEM-genius cis men. In fact, on the day that I first met him, he said that he knew after speaking to me for about a minute that I was neuroatypical-- he has that kind of radar for autism, picking up on more subtle, less stereotypical cases like mine. After talking to him for about ten minutes, he also commented, "What I am hearing is someone who has experienced a great deal of loss." These comments clearly reflected someone who is highly knowledgable about autism as well as someone who quickly picked up on a common denominator in the stories I related. 

Dr. L. was also good at validating my feelings while trying to help me sort through them. Sometimes I would tell him a story about a memory from my teenage years in the 1990s that had come back to haunt me, and I would say, "I feel like even among the autism community I have stories about traumatic interactions that are really unusual." He would tell me, "Believe me, this isn't anything I haven't heard before from an autistic person" and he would elaborate. You name the esoteric experience, he's heard about it at least once and often has some great insight into it. Sometimes, he would also ask me very disarming questions that would make me rethink my perspectives on certain issues. After getting to know me, it was also easier for him to contextualize any new information I gave him.

And finally-- and this is not a trivial issue-- Dr. L. laughed at my weird, gallows sense of humor. And that's important.

Aside from the importance of finding a therapist who understands your situation, it is important that this person is interested in little anecdotes about something fun you did over the weekend and appreciates your sense of humor. After all, if you're working with a therapist once a week, you are not going to have something "bad" to talk about every week-- sometimes not even for months at a time. Why should you? And being able to have everyday discussions with and laugh with your shrink is important. It helps them to see the whole person, and not just where things aren't working. Plus, it helps you feel more comfortable working with them. 

I have had only two therapists besides Dr. L. who I really clicked with. The first one was Dr. F., whom I saw during my senior year of high school. He was the second shrink I had been to, after my shrink that I saw in elementary school whom I have since dubbed Dr. Bonehead (more on him in a bit). After the first or second session together, he commented, "You're a very intense person." Just like Dr. L., he spotted a common denominator right away. The other one, Dr. G., was someone I saw in my late twenties when living in New York City. Like Dr. F. and Dr. L., she was able to appreciate where I was coming from and help me to understand my feelings. She helped me to come to terms with a painful personal loss of two friends who had recently ghosted me (this was in 2008, one of the worst years of my adult life).

Dr. P. doesn't seem to be fitting all of these requirements. She enjoys listening to my anecdotes and laughs at my jokes but, as I've said, I'm not convinced she fully appreciates just what autism is and can be, and I feel her listening skills leave something to be desired. I don't think she's a "bad" therapist, but she might not be a good fit. I have had some "just okay" therapists as well as some awful ones, and I want to share a few stories to help my readers understand just how clueless and even inappropriate (nothing sexual in my case; don't worry) they can be, and that there's nothing wrong with looking for someone else if the shrink you're seeing doesn't seem to be helping. To make things easier to follow (and more amusing), I have given each of these therapists a mischievous nickname:

Dr. Bonehead: My first therapist, whom I saw between 1992-1995, ages 11-14. Nobody knew what autism was in the '90s beyond the Rainman stereotype, so I wasn't diagnosed. Dr. Bonehead meant well, but he didn't understand me at all. He told me I overreacted to the chronic bullying I experienced, he analyzed things that had no deep meaning, and he often expressed shock at my gallows sense of humor. And he seemed to think a good "cure" for my social deficits was to sit two feet away from me on the couch instead of sitting on the other side of the room. Hey, "normal" people would feel a little uncomfortable, but since I wasn't "normal," I guess he thought the answer was to throw me in the proverbial deep end and hope I'd swim. Oh, and he once told me my hair was sexy. While I don't think he "meant" anything by it (he had three years in which he could have touched me, and he never did-- not even a harmless pat on the shoulder), it was still inappropriate and, sadly, reflective of the culture back then when it was considered okay for thirty-something-year-old men to "compliment" adolescent girls like that. Again, I don't think he was trying to do something inappropriate; I think he was just clueless-- in many ways.

Dr. Uh-Huh: I saw this guy in my late twenties, in Brooklyn, for a few months before I started seeing Dr. G. I would tell him stories and he would just go, "Uh huh. Uh huh." I would ask him for some insight, and he would just shrug. Brilliant guy.

The Drama Queen: I saw her in Boston for a few months in 2014. She was inordinately convinced that I was harboring a repressed memory, which is just absurd because my episodic memory is better than most people's (Dr. L. said he has only worked with one other person in 45 years with a memory like mine). I have no trouble remembering traumatic experiences either, so I don't know where she was getting this. She also insisted that certain things in my life-- such as some drama in my extended family, which only came up because she actually had me make her a detailed family tree for some reason-- had a significant effect on me when I knew damn well it didn't. The family drama involved relatives I barely knew, and while I felt bad for my parents, who were at the receiving end of it, it had very little to do with me. These kinds of assertions felt like gaslighting. Additionally, The Drama Queen was Jewish, and she started asking personal questions to ascertain if I was "really" Jewish (that is, was my mother "born" Jewish? Nope, she converted-- I could see the wheels turning in her head when I revealed that). This is not just inappropriate, but irrelevant. Oh, and when I told her I was going to see cognitive psychologist Steven Pinker at an event to promote his new book, she said, "Maybe we can go together." Uhhh, that's a hard "no." Psychologists aren't supposed to interact with their patients outside of a professional setting. 

The bottom line is that finding a good therapist is an art. It takes time, and sometimes you need to try several before you find one that clicks. There is nothing wrong with that. Sometimes they aren't a good fit, and sometimes they are just bad. And if you, like me, are a woman on the autism spectrum-- which sadly isn't very well-understood in much of the psychological community-- it can be like finding a needle in a haystack. My father said it best-- finding a good doctor of any kind, but particularly a therapist, is like trying to find a good mechanic. You can take your car to several mechanics who say, "I don't know what to tell you." And then one day you take it to someone else who takes one look and says, "Oh, I know what's going on."

Sometimes, you just need to keep looking when your therapist isn't working out. And there's nothing wrong with that.

*This is a very in-depth topic, and well beyond the scope of this blog post. But let's just say that even a lot of the psychological community remains ignorant of the different presentations of autism.

Wednesday, August 24, 2022

Knowing My Audience

Yikes, it seems as if every time I start one of these posts, I have to acknowledge that it's been a while since I've last posted. Well, here we are again. And today I have a bit of a bee in my bonnet: It seems that people who've known me for many years sometimes revert to a mindset in which they see me as someone whose social judgment is the same as it was decades ago, in my teens and in my twenties. Yes, it is true. As someone on the autism spectrum, I used to be pretty bad at reading certain situations and knowing which people were an appropriate audience for my very odd sense of humor. But that was a long time ago. So what's been going on that I feel the need to write about this? 

A little background: In March, I managed to get the attention of a celebrity* on social media. It happened when I began posting drawings I made of him as a cartoon character. He liked them so much that he shared a few of them with his followers, and even ended up following me. I was pretty stoked about that! Some of these drawings are "whimsical" and "cute," and others involve my strange sense of humor. In terms of the humorous drawings, well, let's just say they involve a running gag that is a little off-the-wall, complete with my trademark ridiculousness as well as a dash of irony. I was pleased that he liked them so much. However, in the interest of not being one of those pesky fans I also told him that if they started to get annoying-- these days when you tag someone in a post, it sends it to their DM instead of their regular notifications-- to let me know and I would stop. He told me, "Keep 'em coming," and said that he thought they were very funny.

Unfortunately, two of my friends have since reflexively warned me that I might be making this celebrity "uncomfortable" and to "tread lightly." One of them even bluntly implored me to "Stop harassing him." I found this to be incredibly disconcerting, what with the types of loaded words that they used. While I realize that they were not aware of me DMing the celebrity with the offer to stop posting the drawings if they got annoying, this kind of knee-jerk reaction and unsolicited advice feels like it has the subtext that these people do not trust my judgment, perhaps because of stupid things that they remember me doing twenty-ish years ago. I feel like if literally anybody else had been making these drawings, they wouldn't have tried to warn them about anything. Above all, it felt infantilizing, and I even let them know this by telling them, "You sound like my mom." Fortunately, my actual mother had not made these comments on my drawings. I was glad, because I felt like she was getting better at trusting my judgment.

Spoke too soon; the other day on the phone Mom asked me if I was going to stop doing the drawings featuring the running gag. She denies fear of me getting myself in trouble as her motive for asking me this question, but I can't imagine why she would ask that if there was not that subtext. On the same day, this guy I'm Facebook friends with (I barely know him and never met him in real life) called me out about it on a public thread instead of at least DMing me with his concerns. It was embarrassing. And like with my friends and my mom, these concerns weren't expressed in the form of, "Hey, are you sure he's okay with these jokes?" but rather a lecture, warning me of "consequences."

Consequences? What consequences? That the celebrity would sue me? I doubt they were afraid of that; that's just silly. Well, maybe this guy and my friends were afraid that the celebrity would unfollow me. Okay, and? Sure, I would be pretty disappointed if that happened, but I wouldn't lose sleep over it; it's not like I'm laboring under the delusion that I'm friends with this guy. Other than those two examples, I can't imagine what their concerns were. But I guess at the end of the day it's a knee-jerk reaction, based on difficulty of letting go of stupid mistakes I made decades ago. It really bothers me that I continually have to deal with such reactions instead of being given the benefit of the doubt that a neurotypical person would get.

I guess I am hoping that this post also serves as an open letter to people in my life who continue to have rapid-fire reactions to certain things I say and do. Look, I promise that I do know my audience. In the (admittedly limited) interaction I've had with this celebrity, the impression that I get is that he's a decent guy and, more pertinent to the situation, very laid back, silly, self-deprecating, and someone who doesn't take himself too seriously. Importantly, he seems to share my strange sense of humor. Do I know him personally? No. Can I gauge what kinds of things are funny to him? Absolutely. I've been in touch with other celebrities before (hey, drawing is a very powerful communication tool), and I can tell you that one of them did not seem to share my absurdist sense of humor. I would never have made drawings of him with the type of running gag I make of the celebrity I currently interact with. I imagine that the humor would have upset him, not made him laugh.

And, sadly, because so many people had vehemently warned me about possibly making this celebrity uncomfortable (even as he continues to follow me on social media and share my drawings), I got it in my head in a kind of heat-of-the-moment frustration that I should message him with an apology and the promise to stop doing the drawings with the running gag.

His response? "Please don't!"


*It's probably not that hard to find out who I'm talking about if you go onto my social media accounts, but I also don't want to draw unnecessary attention to him here by naming him. 

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

Ass-Backwards

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.