The Thropp Family Narrative: Childhood trauma, Complex PTSD, and “Wicked”

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Images used with gratitude from fancaps.net.

Disclaimer: I am not a psychologist, psychiatrist, social worker, or other mental health professional. In my field, I have worked with folks who have trauma histories, but my primary focus is communication. Mostly I’m just a person who reads and overthinks a lot.

SPOILERS ahead for the movie “Wicked,” which adapts Act 1 of “Wicked” the musical. If you haven’t seen the movie (and I highly recommend you do), consider yourself warned.

I’m avoiding spoilers for Act 2 of the stage show, so first-time watchers are safe.

Dysfunctional Family Systems and Narratives

It’s not exactly groundbreaking to say that that the Thropp family is dysfunctional. Blatant favoritism is basically Governor Thropp’s only personality trait. Like most dysfunctional families, the Thropps operate under a false narrative, which places each person into a role that affects the way they view themselves and each other.

Governor Frexspar Thropp: The power-holder

As the single parent and head of the household, Governor Thropp has the power to shape and uphold the Thropp family narrative: not just the story that Elphaba tells Galinda about Nessa’s birth and their mother’s death, but the general assumption that everything that goes wrong is Elphaba’s fault.

For example, in the scene during Elphaba and Nessarose’s childhood, Governor Thropp arrives too late to notice the children who were bullying Elphaba. He assumes, with no context, that Elphaba did something to upset Nessa. This interpretation fits the family narrative, so he doesn’t even try to find out what actually happened.

It should go without saying that Elphaba did not decide in utero to turn herself green, which makes it absurd to hold her responsible for her skin tone or anything that happens as a result. Yet, as with all cases of family scapegoating:

“Being the scapegoated kid wasn’t about who (Elphaba was). It was about parental illness, it was about their mistakes and their choices, but they made it to be about (her).

By enforcing this narrative, Governor Thropp creates an outlet for his feelings of grief, so he doesn’t have to deal with them or face his own culpability. He also creates a toxic family dynamic that shapes how his daughters grow and develop.

Nessarose: The Golden Child

Nessa is the child “who can do no wrong.” From the Governor’s perspective, she is special and perfect “all the way down to (her) toes.” The Golden Child is usually “very good at something…that the parent values,” in this case, having “a perfectly acceptable” skin color. For this reason, Nessa receives constant affection and extravagant gifts, and no one is allowed to hold her even partially responsible for anything bad.

In the childhood scene, Governor Thropp treats Nessa as the only victim. He offers her sweets while admonishing Elphaba for the fact that Nessa is upset at all. This reaction teaches Nessa that her feelings of safety and happiness are more important than Elphaba’s, that the facts of an incident don’t matter because Elphaba is always in the wrong.

Governor Thropp also believes that Nessa needs constant care and assistance. However, the film version of Nessa, who is played by an actual wheelchair-user for the first time since the show debuted in 2003, rejects this part of her role. She can take care of herself as long as there are ramps (and presumably elevators?), and people stop pushing her wheelchair without her permission.

Nessa has, on the other hand, fully accepted the narrative about her sister. After Elphaba’s uncomfortable introduction to the students at Shiz University, their father chides her for “causing a ruckus.” Later, when Elphaba tells Nessa “I shouldn’t have sprouted off like that,” Nessa replies, “No, you shouldn’t have.” It’s done with a smile and a show of affection, but it ignores the truth of what happened in favor of the family narrative, a clear parallel to their childhood scene.

When Elphaba is bullied by other students, Nessa doesn’t even consider sticking up for her. Instead, she focuses on the way that Elphaba’s differences affect her, because this is what she’s been taught to do. Their moments of sisterly affection almost always occur when Elphaba does something nice for Nessa, such as agreeing to stop complaining about Galinda because she helped Nessa find a date.

“This was my chance- my new start,” Nessa tells Elphaba after the latter loses control of her magic in front of the other students at Shiz.

This is not meant to place all of the blame on Nessa, nor is it intended to absolve her of her faults. It’s simply describing Nessa’s role in the Thropp family system and the long-running narrative that continues to influence her and Elphaba as they enter adulthood.

Elphaba: The Scapegoat

Elphaba, needless to say, is the the family Scapegoat: “the outlier—the one who is different…often the focus of the family’s problems.” This is made clear from the moment Governor Thropp discovers his firstborn child has green skin. In the Thropp family narrative, Elphaba is the cause of every problem, no matter the context. In every interaction between Elphaba and her father, he is snapping at her and/or assuming the worst.

In a video outlining the Scapegoat Narrative, clinician and researcher Rebecca C. Mandeville, LMFT explains that when families scapegoat a young child so consistently:

“(their) very neural pathways are developing around what may be a core sense of being defective, of being unworthy of love.”

This sense is called “toxic shame,” and it’s no surprise that Elphaba carries it into adulthood. Apologizing for her uncomfortable introduction to Shiz, when the only choices she made were to walk a little bit ahead of Nessa and then defend herself against the people gaping at her, is a prime example. Later in the film, she tells Fiyero, “I don’t cause commotions, I am one,” showing how deeply she has internalized the idea that she is at fault for everything that goes wrong.

Elphaba fully accepts the blame for their mother’s death and Nessa’s disability. In her first real heart-to-heart with Galinda, she says, “My father hates me…he has a good reason.” (Galinda’s response is almost-but-not-quite the answer that Elphaba needs to hear: read more about that in this fantastic article).

In fact, only part of the family narrative that Elphaba dares to challenge is the same piece that Nessa has already rejected. “She’ll be fine,” Elphaba tells their father as Nessa starts her new life at Shiz, “She’s on her own now.” However, unlike when Nessa speaks up about it (“Don’t help me”), in this case the Governor snaps at Elphaba to “Stop jabbering! Just do what I say.” The Golden Child might be able to challenge the family narrative, but the Scapegoat certainly can’t.

Dulcibear: The Consoler

From Elphaba’s birth, the only person who shows her love and affection is Dulcibear, her nanny, who raises her while the Governor is busy doting on Nessarose. Although Dulcibear’s ability to defend Elphaba is limited, as she can’t challenge Governor Thropp without risking her job, she can provide comfort when the Governor isn’t around.

Dulcibear may not be able to help Elphaba escape the family narrative, but she does create a deep sense of empathy and connection with Animals. As she and Elphaba share moments of affection when Governor Thropp isn’t around, so too does Elphaba bond with Dr. Dillamond after class. It is easier for Elphba to connect with him than with humans her own age.

Elphaba deeply identifies with Animals, who are essentially Oz’s Scapegoats (no pun intended). On several occasions, when Elphaba describes their maltreatment, it’s hard to tell if she’s talking about Animals or herself. Because Dulcibear was her only source of love, and because the plight of the Animals and Elphaba’s childhood are so similar, Elphaba herself may not be able to distinguish between the two.

Childhood trauma and C-PTSD

By now, it should go without saying that Elphaba’s childhood is full of “ongoing, inescapable, relational trauma,” which can lead to Complex Post Traumatic Stress Disorder (C-PTSD). C-PTSD can include symptoms of PTSD (flashbacks, self-blame, angry outbursts, hypervigilance) with additional symptoms including:

  • Emotional flashbacks
  • Lack of self-worth (i.e. toxic shame)
  • Difficulty controlling emotions

Similar to the way C-PTSD presents in real life, we see these signs in Elphaba as subtle patterns and memorable, dramatic moments. In many cases, Elphaba’s magic is directly connected to her trauma.

Flashbacks and Emotional Flashbacks

Elphaba experiences a few short flashbacks during the film, some mixed with premonitions or memories from infancy, because the magic of Oz can’t seem to let her catch a break. She hears the Munchkin children teasing her and her father shouting “Take it away!” and “Stop jabbering!” She sees Governor Thropp’s face reacting to her as a newborn, the graffiti on Dr. Dillamond’s chalkboard, and a premonition of Dr. Dillamond in a cage.

Talking to Madame Morrible about what happened in Dr. Dillamond’s classroom seems to trigger an emotional flashback: “a complex mixture of intense and confusing reliving of past trauma …with overwhelming sorrow, toxic shame, and a sense of inadequacy.” The incident resonates so deeply with Elphaba that she finds herself quoting her father – rather than the words on the board – as the coin she is attempting to levitate shatters a glass case.

(Later in the film, she has a longer and more powerful emotional flashback, but we’ll get to that.)

Toxic Shame

Even as a child, Elphaba associates the color green with things that are bad. In her description of the Wizard, she mentions that the he likes emeralds “even though they’re green.” This is an example of toxic shame, a “chronic feeling of worthlessness and self-hatred,” which is a major part of C-PTSD.

As an adult, Elphaba sings about her best-case-scenario fantasy of meeting the Wizard, hoping that he’ll see her as “A girl on whom (he) can rely.” She gushes that “All of Oz has to love you/ when by the Wizard you’re acclaimed.” Elphaba doesn’t see herself as someone who is easy to love, more or less someone who deserves love intrinsically. But if the Wizard calls her reliable, then Ozians will have no choice but to follow suit. On top of that, legends say that the Wizard can grant anyone their “heart’s desire,” which in Elphaba’s case could mean literally transforming her into someone who is worthy of love – i.e. someone without green skin.

She also sings an entire song about being unworthy of romantic love, and not just because the object of her affection is already dating someone.

“Don’t dream too far/ Don’t lose sight of who you are/…I wasn’t born for the rose and pearl,” lyrics from “I’m Not That Girl.”

Until she arrives at Shiz, Elphaba believes her magic is, like her, a source of chaos and destruction that she needs to “suppress or hide.” She doesn’t know how she has these powers, only that they are another example of her personal failings.

Speaking of magic…

Hypervigilance and Uncontrollable Emotions

The strongest link between Elphaba’s magic and trauma is her difficulty keeping her feelings in check. She is frequently tense, guarded, and on edge (i.e. hypervigilant), and on multiple occasions, her emotions cause her magic to wreak havoc on her surroundings, especially in situations that connect to her childhood. Some examples:

  • Protectiveness toward her sister – the Golden Child – causes her to levitate Nessa in her wheelchair, as well as all the benches in the courtyard.
  • Shame and defensiveness about the nature of her magic, in the face of Galinda’s questions, cause her to telekinetically slam the balcony door so hard that the glass shatters.
  • Anger at the injustice dealt to Dr. Dillamond and the lion cub causes Elphaba to instinctively scatter poppy pollen around the classroom, putting almost everyone to sleep.

There are nonmagic examples too; during the song “Popular,” after Galinda calls her “beautiful,” Elphaba becomes visibly overwhelmed and leaves the room, incapable of seeing – or allowing someone else to see – herself in such a positive light.

“You think I want to be this way? You think I want to care this much?” Elphaba says to Fiyero during a scene in the forest. “I know that my life would be much easier if I didn’t care.” But Elphaba can’t disconnect herself from her feelings, especially ones that are so deeply rooted in her childhood trauma.

Elphaba demonstrates so many other signs of C-PTSD that it would be impossible to delve into all of them. More examples include:

  • Specific triggers for flashbacks and other symptoms
  • Becoming emotionally detached in the presence of her father
  • Difficulty feeling happy or satisfied
  • Trouble with interpersonal relationships
  • Mistrust, especially of new people

Emotional Vulnerability and Reparenting: Enter Madame Morrible and the Wizard

Madame Morrible is the first human to treat Elphaba with kindness and warmth. “Leave your father to me,” she says, establishing her ability to protect Elphaba from her main source of trauma. Morrible gives Elphaba hugs, calls her magic “a talent” and “remarkable,” and even goes out of her way to protect Elphaba from the rain. Her behavior toward Elphaba markedly contrasts with her cold and dismissive demeanor toward other students, a full reversal from Elphaba’s childhood experience.

This, of course, is a ruse. (I did warn you there would be spoilers.). Madame Morrible is giving Elphaba everything she never had in order to establish emotional dependence. Through Madame Morrible, Elphaba finds what seems like unconditional acceptance and appreciation. “Afraid of losing [that] love,” Elphaba complies with everything Madame Morrible asks of her. By establishing herself as a surrogate maternal figure, Madame Morrible ensures control over Elphaba’s actions, and by proxy her power.

Which is why, after Madame Morrible sees the aftermath of the “poppy incident,” she writes an “urgent” letter to the Wizard, presumably accelerating their plans in order to keep Elphaba under their control.

If Madame Morrible puts on an act for Elphaba, the Wizard puts on an entire production, from the animatronic balloon with its fancy invitation, to the luxurious private train, to the moment Elphaba sets foot in his inner sanctum. This is what the Wizard is best at: grand, over-the-top inventions that dazzle – and distract – his audience.

This next bit is speculation on my part; I believe that “The Great and Powerful Oz” recognizes Elphaba immediately but pretends not to. Hear me out:

  1. He obviously knows she’s coming.
  2. Elphaba has to present her invitation at the door to his sanctum. In a world with small flying devices that can travel the same distance as a train, microphones, radios, and a massive animatronic model of a head intricate enough to change its facial expression, it’s absurd to assume that Stephen Schwartz the man who grants Elphaba permission to enter has no way to communicate with the Wizard.
  3. Because the Wizard has to to manipulate people in order maintain power, it would be equally as absurd to believe he can’t see the who he’s talking to.
  4. He has created a miniature of Elphaba, including her black dress and pointed hat: the exact outfit she’s wearing when she arrives.

So why would he pretend not to know who she is? I can think of two reasons.

First: Elphaba is used to standing out in a bad way. Her day in the Emerald City provides a refreshing break from that negative attention, and by not recognizing her instantly, the Wizard establishes himself as part of it. Here, Elphaba is treated exactly like everyone else, until the Wizard “discovers” who she is.

Second: By “not recognizing” her, the Wizard allows Elphaba to glimpse the version of him that everyone else sees, a sharp contrast with the version that Elphaba gets to see. For once, she is the Golden Child.

In any case, the man who greets Elphaba is warm and welcoming, silly and somewhat bumbling in an endearing way. Although I share these feelings about “A Sentimental Man,” it does demonstrate what the Wizard is trying to do. He’s charming, inviting, and willing to become the father figure that Elphaba has never had. Yes, he’s laying it on thick, but it works.

Many models of C-PTSD refer to a person’s “wounded inner child,” some referring to a process called “reparenting.” From the start, the Wizard and Madame Morrible seem to do this for Elphaba. Their demeanor toward her suggests that she might be intrinsically valuable, despite the Thropp family narrative, despite decades of Scapegoat Abuse, despite the way that Oz has reacted to Elphaba her entire life. Maybe – if Madame Morrible and the Wizard are right – Elphaba’s father was wrong to treat her the way he did. Maybe Elphaba is worthy of familial love. She can express her heart’s desire to help the Animals of Oz because with Morrible and the Wizard, she doesn’t have to change her skin color in order to be accepted.

So it’s no surprise that Elphaba is desperate to demonstrate her power. Madame Morrible has been setting this up from the beginning: Elphaba will need to “prove” herself when she meets the Wizard. Morrible and the Wizard play this moment carefully, asking each other if Elphaba is ready or if the Grimmerie is too much for her, fueling Elphaba’s desire to do what they want. So when the Wizard sets up what he’s hoping for, Elphaba doesn’t have time or space to think it through. Of course the Wizard’s interpretation of Chistery’s bird-watching is accurate; he’s The Wizard of Oz and he’s already established that he’s on the Animals’ side. Elphaba is so focused on demonstrating her skills that she doesn’t think to ask Chistery for permission before attempting the spell that presents itself to her.

Betrayal and emotional flashbacks

Despite Madame Morrible’s attempt at reassurance, the spell’s torturous effect on Chistery and the other monkey guards reinforces everything Elphaba has been taught through childhood: she cannot help but cause pain and suffering to those around her. This is a trigger: a moment that excavates Elphaba’s trauma-response and brings it directly to the surface. In less than a minute, she becomes the destructive force of chaos and shame that the Thropp family narrative has always told her she is. Every ounce of self-worth she has gained, all the good she has learned to see in herself, vanishes under the weight of this narrative that she cannot escape.

Glinda, Elphaba, the Wizard, and Madame Morrible look down the hallway of now-winged monkeys (offscreen). Glinda looks shocked, Elphaba looks horrified, the Wizard looks surprised, and Madame Morrible looks thrilled.
Elphaba is more than horrified to discover how badly she has hurt the creatures whose well-being has been her number one priority.

This, of course, is not the worst part.

The Grimmerie spell was never a test of Elphaba’s power; she proved that effortlessly to Madame Morrible the first day she set foot on Shiz University campus. It was a test of loyalty. Would Elphaba stay with the Wizard, knowing what he really was? Would she abandon her desire to help the Animals of Oz in order to maintain the familial love she so desperately craves?

This is what Madame Morrible and the Wizard have been building toward. By establishing themselves as safe, loving, surrogate parents, they can secure Elphaba’s emotional dependence, allowing them to manipulate her – and therefore her power – for their own gain. Yet this is where their plan goes wrong. Too early, they tip their hand about their role in Animal subjugation. The moment Elphaba hears the word “spies,” everything they have been working for is lost.

So, if Madame Morrible and the Wizard have been so carefully orchestrating all of this, how did they mess it up so badly?

At first I thought it was a minor plot hole; a momentary disconnect from the consistency of their characters in order to fuel the plot. Then I realized something. As much as they know about Elphaba’s childhood, there is one very important aspect they may not have heard about: Dulcibear.

When Elphaba processes her feelings with Madame Morrible after the incident in Dr. Dillamond’s classroom, she is clearly projecting the shame and humiliation she faced in childhood. This, Madame Morrible sees. She does not see Elphaba follow Dr. Dillamond into the forest to witness the meeting of the Animals. She does not hear that as a child, Elphaba’s only source of love and support was an Animal. She does not understand the extent to which Elphaba has internalized the plight of the Animals, that the desire for justice that she was never allowed to express for herself has been fully transferred to the Animals because for the first twenty years of her life, she was closer to an Animal than she could be to humans. So Madame Morrible and the Wizard have no way to understand how deep those feelings lie. They have no way to predict the sense of betrayal that this revelation will bring up.

Would Elphaba have accepted the Wizard being a fraud if he wasn’t oppressing Animal culture? Maybe; maybe not. But after learning that the Animals are being deliberately Scapegoated (again: no pun intended. I did not come up with this term) by the Wizard, a plot enabled by Madame Morrible, the revelation about the Wizard’s powerlessness can only add fuel to the fire. The Wizard’s first promise to Elphaba was a lie. Even if he could grant her heart’s desire (which he can’t), he wouldn’t because it’s antithetical to everything he’s been working for.

Elphaba clutches the Grimmerie to herself and yells at Madame Morrible, “Don’t (touch me)!” and “Stay back! This is an emotional flashback. For these few minutes, Elphaba is a child again, helpless against the authority figures around her, unable to break free from the shame and rejection that has shaped her life. She finds herself in a Fight/Flight/Freeze response, and everything they say only makes it worse.

Reclaiming the narrative

Several harrowing minutes later, Elphaba listens to Madame Morrible, the first human who showed her true kindness, confirm to all of Oz that Elphaba is the exact person everyone – especially the Thropp family system – has thought her to be. It’s an effortless heel-turn, proving that her warmth and kindness was at best conditional, at worst a facade.

“She is evil…Her green skin is but an outward manifestorium of her twisted nature…This distortion, this repulsion, this Wicked Witch.”

Glinda, who has never felt the level of pain and powerlessness that Elphaba has, who was raised by two loving, supportive parents, clings to the belief that Elphaba can erase everything that happened simply by apologizing. She does not understand that the Wizard and Madame Morrible have become unsafe, that returning to them requires Elphaba to subject herself to the shame and humiliation she was forced to endure through childhood. Having lived a life of privilege and admiration, Glinda cannot understand what Elphaba is going through.

Choosing to reject the only course of action that leads to any semblance of external love and validation, Elphaba finally claims that love from the only person who can truly give it to her: herself.

Reparenting the wounded inner child of a person with C-PTSD can – in certain cases – be done by external figures who are safe and trusted (and thoroughly trained), but more frequently it is done internally by the person themself. As explained by the CPTSD foundation:

…reparenting means giving yourself what you did not receive in childhood from the original parents. Reparenting involves learning to give your wounded inner child all the love, respect, and dignity they deserved when you were young.

“It’s me!” Elphaba cries, not just to redirect the palace guards, but to proclaim that she has given herself what the world has never seen fit to. There is no one left to rescue her, so instead she rescues herself. It’s a beautiful, tense, powerful moment; a heartwarming metaphor of a major step forward in the C-PTSD recovery process. Elphaba may have become Oz’s Scapegoat, but she has also become her own hero. “And nobody in all of Oz, no Wizard that there is or was” can ever take this moment away from her.

As of January 26,2025, Wicked is still in some theaters, but it can also be bought or rented through YouTube, Fandango at home, Apple TV, Google Play, or Amazon Prime.

100 Feet Up: In which I use a ludicrous analogy to explain why not everyone has a “personal choice.”

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Imagine, if you will, an outrageously massive and relatively unstable network of interconnected balance beams. Each beam has a platform on one end. Every person has their own platform, where they can choose to wait indefinitely or step off to cross their balance beam.

It’s a mess for a while: tons of people trying and failing to cross their balance beams, willfully unaware of the way their footsteps rattle the beams around them. Many fall off, shaking the beams even more and causing others to fall, who in turn knock over other people trying to cross. The structure shivers and buckles under the weight of so many people. “Stay on your platforms!” the experts shout. Many – though not enough – people listen.

Eventually we get mats installed under the beams, although not everyone chooses to accept one. “It’s my right to cross my beam without a mat!” they shout, rattling the whole structure as they stomp back and forth.

Most people who fall, especially the ones with mats, climb back to their beam (or – if they’re wise – their platform), but a lot of people get hurt. Not everyone survives. About a third of the people who fall sustain long-term injuries that they don’t notice right away. Some people take a long time to recover from the pain; others never do.

And these are just the people whose balance beams are the traditional 4.1 feet off the ground.

“Are you going to stay on that platform forever?” people on the lower beams shout to the ones who haven’t crossed yet.

Some people who had initially waited on their platform now step onto their beams. “It’s a personal choice,” they explain to everyone who will listen. “Each person has to decide what they personally feel comfortable doing.”

Except it’s not that simple, because our balance beams are still connected, the structure is still unstable, and my balance beam is 100 feet in the air.

There are a handful of other people at my height, a whole bunch whose beams are raised 25 or 50 feet, and a few whose beams are much, much higher. Some balance beams are so high that we can’t see the faces of the people on them, and for that reason many people on the lower beams choose to pretend they don’t exist.

Most of us are getting bored and antsy. People weren’t meant to live like this. Sure, we had the opportunity to work together to stabilize the structure – maybe even take it down – but not enough people were willing to help. Alternatively, too many people chose not to. So now we’re all stuck here, and the more we get used to this new normal, the more people venture out onto their beams. Sometimes enough people stand still and the structure stabilizes, but almost instantly people take off onto their beams. The structure shakes and more people fall off. It’s like a circular chain reaction.

As more and more people grow tired of staying on their platforms, there’s a gradual but inevitable shift in public opinion. At first the unreasonable minority were people who tried to pretend the structure didn’t exist, but now the foolish ones are the few people who are still choosing to wait.

“Numbers are down!” people shout in that brief pause before the cycle starts again. “Numbers are down!” they smugly declare while I watch several people fall at the same time. “Numbers are down,” people say so many times that the phrase loses all semblance of its original meaning. Now, if anything, all it means is: “We’ve decided that this is over; out of sheer desperation we have willed an ending into existence.”

“You can’t expect us to stay on the platform forever,” one person says, raising their voice so those of us on the higher beams can hear them.

“Very few people who have mats will die,” the experts announce, facing ahead in hopes that the people above them won’t notice. “The only ones who will die are the people whose beams are too high up anyway.” This news is labeled “encouraging.” For a brief moment, the protests from the higher beams grow too loud be ignored. So we are silenced in other ways.

“You have to choose what you feel comfortable doing,” one person says. I try to explain how high my beam is compared to theirs, but all they do is repeat their statement as if they hadn’t heard me.

“What will it take for you to step off your platform?” another person asks, craning their neck to look at me standing 95.9 feet above them. When I mention the height difference, they mutter “That’s different,” and turn away.

What will it take for me to step off my platform? That question becomes more and more relevant as the collective admits that this structure isn’t going anywhere soon. 

The number of people still on their platforms is steadily shrinking, and as ridiculous as we seem to the people who stepped off immediately, it’s somehow worse for the people who waited a long time and gave up.

Suddenly, those of us left on the platforms are more than just unreasonable and stubborn. We’re annoying, inconvenient, inconsiderate, insulting, offensive. How dare we refuse to cross our balance beams when someone so kindly invites us to? How dare we fish for pity by pointing out the height differences? And how dare we take one brief and tentative step out, but choose not to do it again every single time someone asks?

Our caution becomes noncompliance, heartlessness, malicious and unwarranted rejection. Relationships – social, professional, familial, romantic – strain and snap as more and more people find ways to frame themselves as the victims when we choose not to risk our lives for their comfort. Pointing out the height of my beam too often makes it manipulative, a card I play in order to win arguments and guilt-trip people on the lower beams. Or so I’m told.

What will it take for you?

At this point, I’m crouching on my platform waiting for a miracle – for the structure to stabilize, for the beams to lower, for a balancing stick or safety net instead of just a mat. Possible? Yes. Likely to happen soon? No.

What will it take for you?

There’s a different question being asked here, by people who feel that I owe them something. If the situation isn’t going to get safer, what will it take? How many relationships am I willing to sacrifice before I finally give up and walk across my balance beam, 100 feet above the mats, the structure quivering and swaying with the weight of all the people walking around 95.9 feet below?

Dramatic? Maybe. But this situation is dramatic. It’s just not new anymore. Yeah, we’re all tired of waiting. I’m just not desperate enough to risk my life yet.

“Your imperfections are beautiful!” She-Ra and the power of autistic representation

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Princess Entrapta, working on a project off the left side of the frame, smiles. She appears calm and content.
Princess Entrapta in She-Ra and the Princesses of Power

(Warning for spoilers for Seasons One and Two, with vague discussion of events in later seasons.)

Toward the end of the first season of She-Ra and the Princesses of Power, Princess Entrapta is told, possibly for the first time in her life, “You definitely belong here with us.” She reacts with genuine surprise. Then, in a blink-and-you-miss-it moment before she starts monologuing about plot-related science, she smiles. For me, this scene epitomizes why Entrapta is one of the most nuanced, respectfully-written autistic characters I have ever seen on TV.

Entrapta’s autism is clear from her introduction, even though showrunner Noelle Stevenson only confirmed it after the series finished in May 2020. She stims, infodumps, hyperfocuses, and struggles to stay in tune with the people around her. She has unbelievably strong splinter skills in engineering, as well as specific and idiosyncratic needs around food. She is earnest and literal, often missing the complexities of social situations. In a later season, we learn that Entrapta interprets interactions and relationships the same way that she processes everything else: through recorded observations and data analysis.

What makes Entrapta such a great example of autistic representation? There are a number of things. Let’s start with the most important one:

1. Entrapta’s creation was heavily influenced by an autistic member of the creative team.

Noelle Stevenson also confirmed in May 2020 that board artist Sam Szymanski, who is autistic, played a major role in creating Entrapta, including her physical actions and story arcs.

I am far from the first person to state the importance of allowing marginalized people to represent themselves in fiction. Check out the hashtag #OwnVoices for more information on that.

“Stories about autism” have been told by non-autistic people over and over and over again for decades, resulting in a whole spectrum (so to speak) of harmful tropes, from ableist jokes to inspiration porn to pity-parties for non-autistic family members.

If you want to tell a story about an autistic character in an authentic and inclusive way, you need to involve autistic people in its creation. We know what it’s like to live in a world that ostracizes us unless we camouflage ourselves, a world that makes unfair assumptions about what we can and cannot do, a world that sees our uniqueness as a fault and grieves for people forced to interact with us. We understand the experience of autism in a way that non-autistics don’t, and if you put our perspective into your story, you will speak to autistic people in a way that cannot be done without our input.

2. Entrapta lacks many of the stereotypes found in autistic characters.

Entrapta is not your typical autistic character. For starters, she is a woman, designed and often interpreted as a person of color. She shows a huge range of emotions and she genuinely cares about the people around her. She is nothing like the stoic, white, autistic boys that we are accustomed to seeing.

Entrapta displays a wide range of emotions throughout the series.

Entrapta shows an interest in romantic relationships. It is even implied, in a few humor-for-the-adults moments, that she is sexually active. The non-traditional nature of her interests aside (if you know who she’s looking at in that middle picture, you understand), it’s nice to see an autistic character – or a disabled character in general – who is not assumed to be aromantic and/or asexual by default. The real-life autistic and disabled communities contain a range of romantic and sexual orientations, so it’s refreshing to see something new represented.

Characters who get to know Entrapta discover that she is surprisingly self-aware. She wants to help people and she wants to be liked, but she knows that emotional connection is difficult for her in a way that it isn’t for other people. She also knows where her strengths lie and she tries to use them to make up for her interpersonal struggles.

In an interview just before the release of season five (warning for potential spoilers through season four), Noelle Stevenson talked about one of Entrapta’s most unique areas of strength:

(Entrapta) sees humanity in everything. Not just in humanoid or organic creatures, but she sees humanity in robots. She sees humanity in the AI that drives ships. She sees humanity in one clone in a million identical clones and knows their personality and knows who they are and knows how to connect with them… I think she does more than almost any other character in humanizing characters who have never been humanized before by anyone.

Entrapta sees humanity where no one else thinks to look. This strength flies in the face of the all-too-common stereotype that autistic people lack the ability to see humanity in ourselves, more or less in others. In this sense, Entrapta is more skilled at emotional connection than most of the non-autistic characters, which in media is a rare and exciting trait to see.

3. Entrapta’s autistic traits are often an asset.

Although it is not explicitly stated that Entrapta can see humanity in everything because of her autism, her ability to connect with non-humans can certainly be read that way. Entrapta knows what it’s like to have to learn the rules and complexities of interaction that come naturally to other people. As a result, she recognizes this struggle in other characters.

In Season Five, Entrapta teaches a non-human character about the subtle art of producing and interpreting facial expressions. It starts with a quick exchange:

[Name redacted]: You appear to have a facial tic. Is it cause for concern?

Entrapta: Oh, I’m winking. It signals unspoken intent behind my words. In this case, our mutual deception of [redacted]. Now you try.

This type of lesson comes naturally to Entrapta because, similar to the person she’s talking to, she interprets the world through concrete rules and definitions. She knows what works for her, and so she is uniquely qualified to impart these lessons to characters who struggle in the same way that she does.

Entrapta recognizes when characters use unorthodox ways to express appreciation, affection, or any kind of connection, because she does that too. She knows from experience what these characters need to hear: “I see you.” “I like you.” “I appreciate you.” “I want to be your friend.” And folks, this skill changes the direction of the series in a way I never would have predicted.

Entrapta, her hands folded under her chin, smiles at a character off-screen.
Entrapta finds humanity in places where no one else thinks to look.

Obviously, there is also the matter of her cartoonishly strong talents in STEM and her interest in robotics, First Ones technology, and space travel. Savant-level genius in science and technology is not a unique feature of autistic characters in fiction. However, Entapta’s skills and passions are vitally important to many of the major plot points in the series. A number of events would have been impossible without her interest, focus, and talents. Although these traits are somewhat cliche for autistic characters, it is worth mentioning how much of the story would not have happened if Entrapta were neurotypical.

4. Interpersonal conflicts with Entrapta are multi-sided.

A few weeks ago I wrote a Twitter thread about a scene in Season Five (spoilers for Episodes One and Two in the thread), when a group of non-autistic characters drastically misinterpret Entrapta’s intentions. Entrapta seems so wrapped up in her interests that other characters assume she doesn’t care about people. This is definitively not the case, as she is in fact using her interests to try to help them, but Entrapta doesn’t realize anything is wrong until it’s almost too late.

Aspects of this scene ring painfully true to me as an autistic person. “Are you all…mad at me?” Entrapta asks, and my heart shatters. I have asked that exact question many times. I know very few autistic people who haven’t.

Entrapta is not completely at fault, which the show makes very clear. Non-autistic characters interpret her actions through a neurotypical perspective, which brings them to the wrong conclusions about her. Yes, previous events inform this particular conflict, but this pattern of communication breakdown appears as early as Season One.

Entrapta’s first episode introduces her as an eccentric and socially awkward genius. She doesn’t fit in with the Princesses, and to them it doesn’t seem like she’s trying. There are moments of escalating conflict culminating in the moment when the Rebellion abandons Entrapta in enemy territory.

In the Princesses’ defense: they have reason to believe she’s dead. In Entrapta’s defense: no one thinks to double-check.

A close-up of Entrapta's face. She is looking down, and there are tears in her eyes.
‘They’re not coming back for me.”

If a different member of the Rebellion had been in Entrapta’s position, it’s likely that someone would have gone back for them, even with the evidence that they didn’t survive. But this is Entrapta. This is the Princess who doesn’t fit in. Without her, the Rebellion’s access to technology is limited, but their plans go the way they expect. The Princesses are more comfortable mourning Entrapta’s loss than interacting with her before her “death.”

However you interpret the situation, Entrapta’s perspective is clear. The Rebellion, whose motto until this point is “No Princess Left Behind,” leaves her behind enemy lines. She did not see it coming. She does not know why it happened. Her analysis of the available data indicates that the members of the Rebellion are not her friends. So it is understandable, if not justifiable, why she starts using her talents to support the Horde instead.

This is not to say that Entrapta is faultless (see #7), more that it is easy to understand why she makes the decisions that she does, given the circumstances.

Entrapta’s series-long arc is not about learning how to improve her social behavior and “fit in.” Yes, she makes an effort to express herself more clearly, but any character who wants to earn (or regain) her trust must first accept that her communication style is different from theirs, and sometimes that’s a good thing. Wrongs on both sides need to be addressed. Characters need to accept – even appreciate – Entrapta for who she is. The ones who do this become her closest and truest friends.

I cannot overstate how powerful it is to see an autistic person written with this perspective. Autistic characters, She-Ra tells us, are worth being seen. We are worth the effort. We are not at fault for every conflict, and other people deserve blame when they treat us unfairly. Not every breakdown is entirely ours to fix.

5. People falsely assume that Entrapta does not have empathy.

One of the biggest sources of conflict between Entrapta and other characters is the assumption that she lacks empathy. This misconception hits home with many members of the autistic community, who are often falsely accused of the same thing.

Because we don’t process or respond to emotions or situations in the same way that non-autistic people do, we are often assumed to not know – or worse, not care – how other people are feeling. Entrapta faces this problem from viewers as well as from characters.

Entrapta, wearing safety goggles, looks bemused at a character off-screen. The character is resting a hand on Entrapta's shoulder.
Entrapta is mistakenly assumed, by characters and some viewers, to lack empathy.

After Season One aired, I read an otherwise fantastic article about Entrapta describing her as a “truly Chaotic Neutral” person. My only problem (and the reason I’m not linking to it here) is that the author assumed that Entrapta does not care how other people feel, how people view her, or about the harm her experiments cause.

Some of the otherwise sympathetic characters do the same thing, making claims such as, “You don’t care about [name redacted] or any of us. You only care about tech,” and “You don’t consider how your actions affect other people. People who are supposed to be your friends.” They are wrong on both counts. However, if you interpret Entrapta’s actions as if she were neurotypical, you might logically reach the same conclusion. These characters don’t understand that Entrapta doesn’t intuit emotions from indirect cues the way they can, or process or express information in the same way they do.

From the start, the show makes it clear that Entrapta does care about other people. She constantly uses her skills to try to help the people around her, and she genuinely enjoys making people happy. In a heartbreaking moment in Season One, her eyes fill with tears when she realizes the Rebellion has left her behind. Like many autistic people, Entrapta expresses her regard for others in ways that are unexpected, understated, or unusual, which causes non-autistic people – both fictional and non-fictional – to misinterpret her.

There’s a satisfying irony in this, as an autistic viewer who knows the “autistic-people-don’t-have-empathy” stereotype far too well. Entrapta is such an accurately-written autistic character that even non-autistic viewers think she doesn’t have empathy! Entrapta’s story isn’t just about us, it’s also for us.

6. Entrapta’s desire for friendship makes her a target for manipulation.

When discussing Entrapta’s allegiance with the Horde, there are two important considerations to make. First: in the Horde, Entrapta makes genuinely positive connections with people who accept and appreciate her for who she is, something that she did not have in the Rebellion. Second: her eagerness for companionship is taken advantage of, and she is deliberately manipulated into doing harmful things.

Again, none of this is intended to justify or minimize what Entrapta did when she was with the Horde. See #7.

The Horde is the first place where Entrapta interacts with people who like her for her uniqueness, not in spite of it. She forms real, lasting friendships and feels more comfortable with the Horde than she ever did with the Rebellion.

Catra, Entrapta, and Scorpia sit together on a couch watching something on a screen in front of them. All three of them are relaxed and happy.
Joining the Horde is arguably the first time Entrapta makes non-robotic friends.

For the first time in Entrapta’s life, people show interest in her as a person, not just because of what she can do for them. People ask about her theories and share their experiments with her; even characters who understand less than a quarter of her work want to spend time with her simply because she is their friend. We are led to believe that Entrapta has never had interactions like this with non-robotic beings before.

Unfortunately, Entrapta’s openness and eagerness to please make her a target for manipulation. One character in particular takes advantage of Entrapta’s sense of betrayal and abandonment, deliberately using her desire for acceptance and appreciation to convince her to work for them. It takes a long time for Entrapta to figure out the difference between people who are genuinely her friends and people who are using her for their own gain. This too aligns with the experiences of autistic people, many of whom find themselves in situations of emotional abuse or manipulation because it is difficult for us to identify when we are being used.

Plenty of problems throughout the series are Entrapta’s fault at least in part. This, the show makes clear, is not among them. Entrapta is allowed to want to have friends, and it is not her fault when other people take advantage of her. We end up with a complicated and nuanced arc about a messy situation, told with a tone of dignity and respect.

7. Entrapta, like neurotypical characters, is allowed to make mistakes and atone for them.

One of the most common criticisms from autistic people is that Entrapta’s autism is used to explain the terrible things she did with the Horde. This is a fair assessment; Entrapta switches sides in part so she can better complete her experiments and inventions using the resources available to her. On several occasions, she watches her inventions wreak havoc on the Rebellion or the planet, too focused on evaluating the results to acknowledge the harm that she’s causing. It takes her a long time to recognize when her experiments go too far. The “autistic mad scientist” trope is not a new or fun stereotype, and Entrapta arguably falls into it for a while.

Entrapta, seen through a tracker pad screen, is making a delighted proclamation. She is smiling, her left hand pointing upward and her right hand on her hip. A small Robot with an orange bow tie is on her left side, watching her.
Entrapta is on the side of science and anyone who will ask about her theories.

Part of what makes Entrapta’s story different is her capacity for redemption, which is one of the central themes of She-Ra and the Princesses of Power. Characters who acknowledge their mistakes and actively work to fix them deserve to be forgiven, not punished. Princess Entrapta is neither the first nor the last character on the show to have this arc. Her redemption is messy and complicated, with steps forward and backward, making the payoff all the more satisfying.

Beyond finding peace and redemption for herself, Entrapta has the chance to forgive people on both sides of the war who wronged her. In turn, her capacity for forgiveness and understanding gives other characters the opportunity for redemption. As rare as it is to see autistic characters given a story with this much nuance, it is even rarer to see us acknowledged as a source for improvement for other people.

This also means that Entrapta is allowed to not forgive characters who don’t deserve it. “You don’t understand what makes us strong,” she tells someone, in a powerful moment late in the series, “And that’s why you’ll never win.” This line is particularly compelling coming from Entrapta, who has had to work harder for that understanding – to become part of the “us” in her statement – than most of the characters on the show. She has seen humanity where no one else thought to look, she has shown characters that different ways of perceiving and interacting with the world can be strengths, and she has given seemingly irredeemable characters the chance to become better people.

Entrapta gives a shy smile to a character off-screen.
Entrapta, more than anyone else, understands what makes people strong.

Are there flaws? Of course. No single portrayal of autism is going to reflect everyone’s experience, and every story will have aspects that don’t resonate. In particular, the “autistic mad scientist” trope is an understandable dealbreaker for some people. Entrapta’s story is not perfect, but for me she resonates more strongly than almost any other character on television.

Entrapta makes me feel seen and heard and appreciated. She gives people like me permission to be different, permission to be ourselves and to seek out people who appreciate us for who we are, not just what we can do for them or how much we can make ourselves conform. People like her, people like me, are worthy of friendship and love and forgiveness and respect.

All five seasons of She-Ra and the Princesses of Power are currently streaming on Netflix.

The Neuro-A-Tryplicate Makes Tea

Published on by Apparently in Deep Contemplation2 Comments

The world is entirely too serious right now, so I’m taking a break from all that to give you an amusing snippet from the daily life of the NeuroATryplicate, where Autism, ADHD, and Anxiety valiantly attempt to coexist inside my brain. It does not always go well. For example:

Person Holding Mug

The scene: My kitchen. I am making tea.

AUTISM: This water needs to be boiled to the exact right temperature and steeped for the precise number of minutes; otherwise, this will be… Bad Tea.

ANXIETY: Should we get a timer?

ADHD: Nah.

ANXIETY: Are you sure?

ADHD: OH S*** I FORGOT TO CHECK THE TIME WHEN I POURED THE WATER. I LITERALLY HAVE NO IDEA HOW LONG IT’S BEEN STEEPING.

ANXIETY: Of course you did.

AUTISM: This will be Bad Tea.

ADHD: Oh well, lets wing it. Time is real, right? Has it been long enough yet?

AUTISM: No.

ANXIETY: No.

ADHD: (Does other tasks) How about now?

AUTISM: No.

ANXIETY: Maybe? I don’t know.

ADHD: How about now?

AUTISM: No.

ADHD: Should I drink it now?

ANXIETY: DEFINITELY NOT. IT’LL BE WAY TOO WEAK, AND EVERYONE WHO MAKES TEA WILL JUDGE YOU.

ADHD: (Does other tasks.)

ANXIETY: GET BACK HERE RIGHT NOW. THAT TEA HAS BEEN STEEPING WAY TOO LONG AND IS PROBABLY RUINED.

AUTISM: This is going to be Bad Tea.

ADHD: I’ll test it.

ANXIETY: WAIT NO, IT HASN’T HAD TIME TO COOL. YOU’LL BURN US…

ADHD: Ow.

AUTISM: This is Bad Tea.

ANXIETY: This is the tea we deserve.

AUTISM: We need a timer for this. A kitchen tea timer.

ANXIETY: We need one because we are bad at tea and don’t deserve nice things.

ADHD: I’ll get us one…

AUTISM: Great.

ADHD: …Later. (Does other tasks until questionable-quality tea gets cold.)

An open letter to the board creating the special Autism certification for SLPs

Published on by Apparently in Deep Contemplation11 Comments

According to a recent announcement made by ASHA, Speech-Language Pathologists (SLPs) will soon be able to become Board Certified Specialists in Autism Spectrum Disorders (BCS-ASD) if they “have completed training related to the implementation and supervision of evidence-based intervention programs in a variety of areas including social communication skills, speech, language, and behavioral programs.” The reason for this new credential is “Consumers often seek the services of a professional with “expert” status, and employers are looking for staff who demonstrate that they have specialized clinical expertise at an advanced level…you will join a network of outstanding professionals who share your interests and experience.”

Although specific information about this certification, or the process of creating it, has been alarmingly scarce, this secondary source mentions a few more details.

  • According to an unnamed board member, the certification process will involve “many components of applied behavior analysis SLPs should have.”
  • Lynn Koegel, the person who initiated this process and is listed as the primary contact for questions, is one of the founders of Pivotal Response Training (PRT – similar to ABA but applied even more systematically). She also founded the Koegel Autism Center.
  • In a presentation at the ASHA convention last year, it was revealed that BCS-ASD speech therapists may be able to oversee PRT.

The second point is easy to verify with a Google Search. So my first question is: are the first and third points true? If not, please feel free to disregard the concerns I have about them. Not to worry, I have several other points to raise here.

I have been a Speech Language-Pathologist (SLP) for six years. During that time, I’ve worked with autistic people of all ages in almost every setting. I’ve done everything from AAC to articulation to conversational skills. I’ve given inservices, advised family members, and recommended environmental modifications. I’ve been bitten, punched, and pulled out of my seat by my hair. I’ve had long and fascinating conversations about religion, ecology, and our solar system. (That last one, by the way, was with a four-year-old.) I’ve had my worldview challenged multiple times and in many ways, and I am a better person and therapist for it.

I have learned a ton about life, the universe, and myself from autistic people. I don’t say that to be cliche; it is literally true. Not too long ago, I myself was diagnosed with autism.

I’m telling you all this because I need you to understand how familiar I am with the scope and variety of strengths and needs in the autistic population. I have a number of concerns with your BCS-ASD program, and these concerns are coming from a place of knowledge and expertise, both personal and professional.

1. The description of this certification does not mention Augmentative and Alternative Communication (AAC) or Auditory Processing.

Your description refers to three different aspects of communication (social, speech, and language) but omits two that are particularly significant to the autistic population. First, you make no reference to AAC even in general terms, even though a substantial portion of the autistic population uses AAC to communicate. Second, you fail to include auditory processing, which is another aspect of communication that presents a significant difficulty to many autistic people.

Your description of the BCS-ASD ignores two aspects of communication that are essential to significant portions of the autistic population. It is irresponsible to say that a therapist who specializes in communication has specific expertise with Autism Spectrum Disorder without first requiring the therapist to demonstrate knowledge and experience of issues that are vital to understanding the strengths and needs of autistic people.

2. The description mentions one skill that is tangential to the SLP scope of practice, but excludes others.

Nowhere in your description is there any mention of sensory processing. This would make sense, given that sensory processing falls outside the SLP scope of practice, except that you do mention a different field outside of our practice: behavior. Sensory needs and outward behaviors are both essential to understanding the strengths and needs of autistic people. So, it is perplexing that you have included one but not the other.

3. There is no reference to the involvement of autistic people in developing this certification.

Aside from the ambiguous meaning of the word “consumers,” you make no effort to describe how this certification benefits autistic people directly, or what (if any) role autistic people have played in developing the BCS-ASD program. There is no information on how many (if any) autistic people were included on the board. If you do not allow autistic people to participate or even consult, you cannot be sure you are meeting the needs of the autistic community. You are making decisions that affect autistic people without allowing them – us – to have a voice.

4. ABA was specifically mentioned as a requirement for receiving the BCS-ASD.

This is a big one, so bear with me.

Even the U.S. Education Department acknowledges that ABA is not the only treatment method for autistic people. It is extremely well-known, but it is not a requirement, especially for communication therapy. Six years of clinical experience has taught me that I do not have to use ABA in order for my autistic students or clients to make progress in their communication. Yet ABA is specifically mentioned as a requirement for SLPs who want to specialize in Autism.

ABA has a deeply problematic history. Ole Ivar Lovaas, the man who founded it, has gone on record saying horrifically dehumanizing things, including:

“You have a person in the physical sense — they have hair, a nose and a mouth — but (autistic people) are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

“believe me they are monsters, little monsters”

“I just reached over and cracked her one right on the rear. She was a big fat girl so I had an easy target. …And she stopped hitting herself for about 30 seconds…and then she hit herself once more…I felt guilty, but I felt great. Then she hit herself again and I really laid it on her. You see, by then I knew that she could inhibit it, and that she would inhibit it if she knew I would hit her. So I let her know that there was no question in my mind that I was going to kill her if she hit herself once more, and that was pretty much it. She hit herself a few times after that, but we had the problem licked.”

Interview in Psychology Today, 1974

With these quotes in mind, it is not surprising that preliminary evidence shows a significant portion of people who experience ABA show symptoms of post-traumatic stress later in life.

ABA has always been steeped in blatant ableism, and people who experienced abuse at the hands of ABA practitioners are still coping with trauma to this day.

Even clinical educators and researchers are finding that ABA is more abusive than beneficial and in fact this applies to compliance-based training in general.

But wait! You might say. ABA has changed! It’s better now! To that I respond: not exactly.

Here is a parent listing problems with “the new ABA.” Here is another one. Here is an autistic person analyzing videos of “modern ABA” practices. If you only have time to look at one of these three sources, I particularly recommend this last one.

You may not have time or energy to read any, so here are some of the common points:

  • ABA is, at its core, compliance training. It teaches children to do what they are told, when they are told, because they are told.
  • Compliance training teaches children that they are not allowed to say no to something that is unpleasant or uncomfortable to them. ABA with physical prompting teaches children that other people can touch and manipulate their body without their consent. This can leave them vulnerable to serious abuse in the long term.
  • ABA does not always consider the ways that behavior is communication. When it does, it often uses this knowledge to force or manipulate a child into doing what practitioners want them to do.
  • ABA practitioners ignore the way that children are feeling in the moment. This teaches children that their feelings are wrong or unimportant. The assumption that children need to “earn” things they need or want teaches the same thing.
  • Even “new” ABA uses aversives in the form of “planned ignoring,” meaning that if a therapist doesn’t like a child’s behavior, they simply ignore the child until it goes away. This practice teaches children that their voice is only worth using if they’re expressing something that adults around them want to hear
  • ABA takes away from the time that autistic children get to spend being children, enjoying themselves, and exploring the world on their terms.

Yes, there are individual ABA practitioners out there who choose to implement ABA in a way that does not do these things. Yes, there are ABA practices that can benefit children of all neurotypes in a way that is not harmful. For example, if a child communicates “silly putty” to me, and I immediately give them silly putty, I am using principles of ABA to reinforce successful communication. I understand this.

However, when a therapist or educator implements ABA without also valuing the child’s unique way of perceiving and interacting with the world, in the long-term they do more harm than good. I know, because I’ve seen it happen.

I have worked with many, many children and adults who have been taught through ABA or related practices that their feelings don’t matter, that the things they need or enjoy always need to be “earned” by doing what adults ask. Do you, the members of this board, understand how difficult it is to improve the communication of someone who has been trained not to trust themselves? I end up using a trauma-sensitive approach with students who have no source of trauma in their lives other than years of ABA. Do you realize how heartbreaking this is? Can you empathize, even for a moment, with the people you are trying to help?

Regardless of whether you are able to use perspective-taking skills on autistic people, there is empirical evidence that not all ABA targets or practices are effective. For example:

5. There appears to be a Conflict of Interest with the person in charge of the BCS-ASD program.

Although behavior is mentioned as an important component of working with autistic people, AAC, auditory processing, and sensory processing are all omitted. This pattern of omission, given that Lynn Koegel founded a form of behavior therapy, is concerning on its own. If the first and third bullets from above are true (the certification will require knowledge and/or experience with ABA; people with the BCS-ASD will potentially be supervising PRT practitioners), the Conflict of Interest becomes even more problematic. At best, the specific experiences of the person who initiated this program are causing an inadvertent exclusion of areas that are vital for understanding communication in autistic people. At worst, the founder of PRT is creating a specialty certification, under the guise of improving services for autistic people, that will channel more money into programs that she developed. Either way, there are deeply concerning ethical issues about this process which need to be addressed immediately.

The bottom line is this: in your BCS-ASD program, you adhere to a specific perspective of autism that sees ASD as a behavioral disorder to be treated using reward-and-punishment compliance training. In doing this, you fail to include multiple traits of autistic people that are directly relevant to SLPs, even though you do mention behavior, which is not. You give no consideration to SLPs who have a different perspective of autism. According to this description, any SLP who has ethical problems with ABA will not qualify for this certification, no matter how much experience they have had with the autistic community. You anticipate that certified therapists will be able to supervise PRT providers, without acknowledging the Conflict of Interest this presents, given that the person who initiated the process is the very person who founded PRT in the first place. Worst of all, you fail to mention whether autistic people had any role in establishing this certification program.

When I first heard that a program was being developed for SLPs to obtain a specialty certification in autism, I laughed. I really did. My initial thought was that I already have certification in SLP and ASD, so I guess I’m all set! Obviously that’s not what you have in mind. Indeed, a large portion of the SLP professional culture doesn’t believe it’s possible for autistic therapists to exist.

But this isn’t about me.

This is about the autistic people I work with being, once again, defined in a very specific way that ignores significant needs and accommodations while pushing treatments that have the potential for harm. At best, this program is ableist and exclusionary. At worst, it’s ableist, exclusionary, and corrupt.

It’s not just that your perspective is different from mine. It’s that the possibility for variations in perspective are ignored, that preference is shown for the perspective that stands to financially benefit the people coordinating this process, despite the potentially harmful impacts on the people we are claiming to serve.

I am an autistic speech therapist, and I love working with my autistic students. I love helping them communicate, and I love helping the people around them appreciate them for who they are. This is something I have devoted a significant amount of my time and energy to for several years, and I hope to continue in this capacity for many years more. Autism helps me in this regard because it gives me the intense passion and hyper-focus that allows me to put everything I have into helping people in the autistic community find their voice and use it as effectively as they can. I would hope that at least one person on the board can understand this.

I am asking you to reconsider the criteria for this certification. I am asking you to either mention sensory differences AND behavior, or mention neither at all. I’m asking you to include AAC and auditory processing under necessary areas of expertise. I’m asking for acknowledgement that autism is – in addition to being a neurological disability – a difference in perception and communication that is exacerbated by stigma and lack of understanding from non-autistic people. I’m asking you not to require SLPs who work with autistic people to endorse ABA.

Most importantly, I’m asking you to consider the wants, needs, and preferences of autistic people when you create programs that affect them as directly as this one does. I’m not asking to be personally included; I am, after all, an anonymous blogger and I intend to stay that way. I am asking for someone – even one person (though preferably more) – on the autism spectrum to give input into this program, and for their perspective to be valued and considered very carefully. You claim you want to help autistic people. So do that.

How to teach pragmatic language without being ableist

Published on by Apparently in Deep Contemplation11 Comments

Here’s a thing I maybe shouldn’t admit: I hate doing Pragmatic Language Therapy.

For those of you don’t know, “Pragmatic Language” refers to the use of verbal and nonverbal language in social situations. PLT, which closely overlaps with the terms “Social Communication” and “Social Skills,” is one of many areas that Speech-Language Pathologists (SLPs) can target. It includes a wide range of skills, such as:

  • The use of pitch and tone (example: “She has a cat.” vs. “She has a cat?”)
  • Perspective-taking (“How does that person feel and why?”)
  • Using language for a variety of purposes (commenting, requesting, rejecting, etc)
  • Clarifying miscommunication (saying something in a different way, saying “I don’t understand”)
  • Following conversational rules (taking turns speaking, staying on topic) and rituals (greetings, farewells, etc)
  • Starting and ending conversations or topics

Part of my dislike of PLT is the fear that I’ll have to teach a skill I barely know how to use in my own life. I have never been particularly socially adept, and there will always be aspects of the Neurotypical (NT) social sphere that elude me. So who am I to evaluate and teach these skills in other people?

That said, many of my feelings on the subject stem from my oft-repeated opinion that Speech-Language Pathology is an unapologetically ableist field. With PLT in particular, many of us are encouraging ableism in the people we serve and the other people around them.

It is possible to conduct PLT in a way that is inclusive and empowering instead of ableist. Some folks do benefit from direct instruction in Pragmatic Language, as long as therapists and educators are careful to avoid the pitfalls of ableism and other forms of bigotry.

Here are a few reasons why I dislike PLT, followed by some questions for educators and clinicians to ask themselves when teaching social communication in any of its forms.

Reason #1: “Pragmatic Language” is an arbitrary category.

Someone on a forum for SLPs asked about the difference between “Social Communication” and “Pragmatic Language.” Almost every single person (myself included) replied with different ideas. This field is so subjective and ill-defined that we don’t even have agreed-upon definitions for the most general terms!

Beyond that, folks in and around SLP culture tend to use these terms to refer to behaviors that have little if anything to do with communication or language. A certain big name manufacturer of speech therapy materials seems to define “social skills” as everything from manners to eye-contact to school rules. I’m not sure in which universe “walk quietly in a single-file line” counts as communication, but it’s not the one I live in.

This blurring of the boundary between “pragmatic language” and “school behavior” means I get a lot of requests for Pragmatic Language evaluations of students who have emotional, mental health, or conduct/defiance disorders. Yes, it’s important to find out whether these students have communication difficulties underlying or exacerbating their struggles, but it’s neither fair nor productive to assume they do by default. If you tell a student “sit in the blue chair,” and they look you in the eye and deliberately sit in a red chair, that isn’t necessarily a communication breakdown. There is a strong possibility that that student is communicating something to you exactly as they intended. You don’t get to assume they have an impairment simply because they are communicating something you don’t want to hear in a way you don’t want them to communicate it.

Including challenging behaviors under “pragmatic language” comes from and contributes to an presumption that behavior and social skills are inextricably linked. This is sometimes true. The assumption that it is always true is, among other things, ableist. Which brings me to my next point:

Reason #2: Many judgements about social skills stem from ignorance and/or indifference to diverse perspectives.

Oh look, I’m complaining about ignorance and bigotry in my profession! It must be a weekday. Or a weekend. One of the two. Anyway…

In the United States, SLPs are required to show Cultural Competence in all aspects of our profession. As noted by the American Speech and Hearing Association, this can include: “age, disability, ethnicity, gender identity (encompasses gender expression), national origin (encompasses related aspects e.g., ancestry, culture, language, dialect, citizenship, and immigration status), race, religion, sex, sexual orientation, and veteran status.” Cultural Competence requires us to consider a person’s unique set of identities when we evaluate, write goals, and conduct therapy.

One of the reasons PLT stresses me out is that the “rules” of verbal and nonverbal social language differ drastically between all of the aforementioned groups, but NT people – especially white western folks – tend to view their way as The One Correct Way. Any deviation is flagged as something wrong that should be fixed. Cultural Competence requires a deliberate effort to consider individual differences. It means identifying our biases and deliberately working to overcome them.

Cultural differences affect language and communication in a variety of ways, but Pragmatic Language is possibly the most obvious one. Examples include physical proximity and boundaries, conversational turn-taking, direct vs indirect communication, conflict resolution, and social rituals. Body language that may come across as friendly to one person may feel aggressive to another; the opposite behavior may feel rude to the former person but welcoming to the latter. Cultural competence means acknowledging that neither perspective is is The Correct One.

To be fair, many Pragmatic Language assessments do specify that clinicians need to consider a person’s culture when evaluating them. The issue of Cultural Competence is more widely acknowledged than some of the other problems with PLT. That said, the overwhelming majority of SLPs in America are white, a demographic which is only recently starting to move away from seeing ourselves as the “default.”

Over and over I have witnessed SLPs making racist remarks – in seminars, at work, or on social media – about a person’s appearance, behavior, dialect, vernacular, or accent. Some SLPs have argued vehemently, even violently, about gender-neutral pronouns, queerness, or gender roles. These biases influence evaluation and treatment of language, and many of them impact PLT in particular. How can we truly be Culturally Competent when so many biases keep getting in our way?

In one of the more widely-known Pragmatic Language rating scales for kids and teenagers (the Pragmatics Profile of the CELF-5), one item asks how a student responds to “teasing, anger, failure, or disappointment.” Students receive the highest possible rating when they always (or almost always) respond using “culturally appropriate” language. There is no mechanic to consider students who mask their emotions due to anxiety, depression, or something else. In a different assessment (the SLDT), students receive the highest possible score for some items if they state that they would lie to peers in certain situations. These lies are rated higher than truthful responses showing empathy or sympathy. In a Social Skills checklist for Preschool-age children, students who spend almost all of their time playing with peers are given higher scores than children who play on their own at least some of the time. Students receive higher scores simply for being extraverted. In these cases, it is up to the clinician to consider individual differences.

Unsurprisingly, neurotype is not one of the factors listed under Cultural Competence, even though even some SLPs are starting to acknowledge that autism is an identity worth respecting. Excluding neurodiversity is especially problematic because a huge portion of the people who receive speech therapy, especially PLT, are autistic. Yet instead of recognizing autism as a different way of perceiving and interacting with the world, many practitioners of PLT train autistic folks to act neurotypical (also known as “masking” or “camouflaging”), even when their reasoning directly contradicts research.

Take, for example, the study that used MRI scans to demonstrate the negative effects of eye-contact on autistic people, or the study showing that interaction between autistic people is just as effective and meaningful as interaction between non-autistic people. Consider the research that shows masking/camouflaging to be one of the highest risk factors of suicide in autistic people. The fact that these articles haven’t made waves in the field of PLT indicates how little respect our field has for neurodiverse (ND) identities. Instead, clinicians and educators trick, bribe, prompt, or force autistic people to make eye-contact against their will. They continue to push the narrative that autistic people are inherently poor communicators who require extensive therapy in order to have successful relationships. By ignoring the perspectives, strengths, norms, or needs of autistic people, this narrative would blatantly violate the rule of Cultural Competence, except that ASHA has yet to include ND folks in its definition. As a profession, we do not seem to care.

Reason #3: PLT can be abusive and damaging.

Recently, The Guardian published an article about a school that forced a 10-year-old special education student to draw a picture of himself surrounded by a list of his personal faults. This “project” was their response to the student’s complaint that other students were bullying him. How did he come up with all his flaws, you ask? Simple: he was forced to sit down and listen as his peers, under the direction of the educators, told him all the reasons they didn’t like him.

There are so many problems with this: victim-blaming, humiliation, ableism, and abuse, for starters. Unfortunately, this incident is the product of a system that consistently others and humiliates people who are different, placing them at fault for any bullying that they face. For example, this research review on autism and bullying lists a series of social deficits that make autistic people prime targets for bullying, without placing any responsibility on the people who bully them. A more recent example is the range of reactions to the aforementioned incident from SLPs and other clinicians and educators on social media. Some people expressed discomfort or distress, but more people described similar practices that they use during PLT.

Although usually more underhanded and implicit, PLT has the potential to hurt students in the same way that this school did. Without careful consideration, it’s easy to accidentally teach a student self-hatred, internalized ableism, and victim-blaming. PLT can train people to think “I’m bad and it’s my fault that people bully me” or “I need to change who I am if I want to have friends,” even if we’re not making them write or say these things directly.

As mentioned before, PLT with autistic people teaches masking, which means adopting behaviors that mimic NT people. Far too few NT clinicians understand (or care?) how much emotional labor this takes (here is a long but amazing article on emotional labor and autism) or how false and draining it feels.

I’m going to give a personal example. My social experience as a preteen and early teenager was not, shall we say, great. (I’m going to skip the details, but you can probably infer them based on what frequently happens to ND students at school.) I lacked awareness of social nuances. I rarely if ever thought through what I was saying, how I was saying it, or how I might make people feel. This is not to say that I didn’t care how other people felt, just that some things that are obvious to NT people simply didn’t occur to me. To make matters worse, I was not diagnosed with Autism or ADHD until adulthood, so people were responding to me as if I was a NT child whose difficulties were due to personal faults.

And then I learned how to mask.

Like a lot of autistic people, I needed to be confronted with social expectations in blunt, concrete ways. Like a lot of autistic people (especially girls, though boys do this too) I learned the rules through imitation. I mimicked my peers, even when I didn’t like or understand their behavior, in a desperate attempt to be liked. It worked, in a sense. After years of trial-and-error, I created a mask that allowed me to blend in, which noticeably improved my social experiences. When I successfully pretended to be a NT person, I fit in…right up until I burned out.

Masking is exhausting. As an introvert, I already find social interaction draining, but doing it while pretending to be someone I’m not is even worse. Because that’s what masking feels like: pretending. When I mask, I’m playacting. I’m deceiving people. I’m adopting mannerisms – good and bad – that I see NT people use, because after a couple decades of practice, I’ve learned that This Thing works in This Context. Constantly maintaining that facade is exhausting.

What’s worse, because of the way my social experience improved as I got better at masking, I learned that I was only allowed to have friendships if I successfully fooled people into thinking I was someone I’m not. Even before I learned I was multiply-neurodivergent, I was hyper-aware that I was fundamentally different from everyone around me, and not in a good way. Years of teaching myself to mask may have improved my life on the surface, but with those improvements came an Anxiety Disorder (even now there are social nuances I don’t understand, which creates a deep-seated fear that I will mess up and ruin everything without knowing why), suicide attempt (just like the research indicates!), and the belief that my value as a person is entirely dependent on my ability to act like someone else.

This is just my experience as a white ND person. For ND people of color, the experience is even harder. With the extra scrutiny and discrimination against people of color by police, CVE programs, and white civilians, masking for autistic people of color is an actual matter of life and death.

If the link between suicide and masking was surprising before, hopefully it makes sense now.

When we conduct Pragmatic Language Therapy with autistic people, we are teaching them to mask. I cannot stress this enough. We are literally teaching autistic folks to act like someone they’re not, with the promise that their quality of life will improve as a direct result. The sad part is: it’s true. For many autistic folks, positive relationships with NT people, such as friendship, romance, employment, tolerance, and (for some) not being killed, directly correlate with their ability to successfully mask their autism.

This is due to a wider systemic and social problem that individual therapists can’t fix. But PLT, unless it’s conducted in a deliberate and mindful way, reinforces the idea that value and worth is inextricably linked to the ability to pass as NT.

Reason #4: Often, we aren’t teaching what we think we’re teaching.

Too often, social skills or other lessons with Special Education students teach universal compliance rather than skills promoting independence and dignity. We are constantly telling the people we work with that they don’t have the right to say “no.” In addition to the overuse of physical prompting, I’ve witnessed educators and clinicians saying things like: “You do not say no to other kids,” or “Never say no to an adult.” For people who think literally, imagine the sorts of problems this message can cause in the future. If you work with autistic or intellectually disabled people, step back and consider the scope and variety of abuse that you are potentially enabling when you teach a person to “never say no.”

This is an extreme example. There are also less extreme ones.

For one, there’s a certain fictional student designed to teach children how to listen with their “whole body.” Listening, he asserts, is not just about hearing what a person says; it’s also about looking at that person’s eyes and keeping your body completely still. This character teaches students how to show adults that they are listening, but does not acknowledge that for some people, Whole Body Listening is counterproductive.

With my double diagnosis of Autism and ADHD, I can tell you with great certainty that when I focus on looking at a person’s eyes and suppressing my tendency to fidget or stim, it is very difficult for me to process what they’re saying. Many, many, many,* many, MANY other ND folks report the same thing.

*For discussion of listening and looking, skip to ahead to 2:13. Honestly though, the entire video is worth a watch.

For ND people, I compare Whole Body Listening to rubbing your stomach while patting your head, or doing a crossword puzzle with the TV on. With time and practice, some of us can learn to those things simultaneously, but it will always take extra effort. For others, it simply cannot be done. Yet PLT tells ND people that our style of listening is “wrong,” that the “right” way to listen is to make things difficult, even impossible, for ourselves in order to help the speaker feel comfortable.

Another example of counterproductive PLT is “Size of the Problem.”If you follow me on Twitter, you may have seen my rant on this topic about six months ago. Here’s a condensed version:

My watch broke one morning at work, on a day when my schedule was particularly full. As a result, I shut down. You know what absolutely did not help me? Thinking about the “Size of the Problem.” I knew perfectly well that not having a watch didn’t make my day impossible. There are clocks on the walls of literally every classroom, including my own. That knowledge didn’t stop me from feeling, in the moment, like my day was imploding around me. I’ve had students and clients experience grand mal seizures during therapy sessions, and I responded to them exactly as I was trained. But when my watch broke, so did I.

Size of the Problem doesn’t work if it refuses to acknowledge when a person is genuinely upset. SotP doesn’t work if it treats people like they can’t recognize the difference between an emergency and an inconvenience, simply because their reactions are not what NTs expect. Very few people, NT or ND, feel comforted when someone tells them, “It’s not a big deal” or “You have nothing to be upset about.” SoTP is pretty much that, only as a structured lesson plan.

Implemented carelessly, SotP teaches a person to hide what they’re feeling because their emotions are wrong and should not be acknowledged. It teaches people that their internal reactions cannot be trusted. It teaches people to say “it’s not a big deal; I have nothing to be upset about” to themselves.

All this to say, if PLT doesn’t take each person’s perspective into account (which, funny enough, is one of the things PLT teaches people to do) it can teach something very different from its intention. It teaches people to comply with everything regardless of personal discomfort; it teaches people to make situations more difficult for themselves because their communication partners’ comfort is more important than their own.

So how do we conduct PLT without damaging the people we’re trying to help? Here are some questions to ask yourself when you are planning or implementing PLT.

Question #1: Am I making space for people who perceive the world differently than I do?

A lot of these questions focus on making therapy person-centered. This is a concept that many of us have probably discussed in Grad School and/or Continuing Education. Person-Centered (which is different from Person First, a concept that can be insulting to disabled people) therapy asks us to consider a person’s unique set of traits and perspectives. Their individual wants and needs should inform every step of evaluation and therapy. When you design and conduct PLT, are you considering the viewpoint of a person whose perspective is different from yours?

Let’s start with Size of the Problem. For all its faults, SoTP can equip a person to step back and think through problems. SoTP can help people who have trouble recognizing the difference between an emergency and a fixable inconvenience, as long as the criteria for this difference does not include: “How you should react.” For therapists, this means acknowledging that a person’s emotional size of the problem may differ from 1) the therapists’ emotional size of the problem and 2) the practical size of the problem. It means recognizing that these differences exist and should be acknowledged, not punished.

Instead of asking “How should I feel about this?” SoTP should ask questions like: “Do I need to find help?” “Should someone call 911?” or “When I feel calm, can I solve this on my own?” SoTP can acknowledge the difference between “big problems” and “small problems” by focusing on practical effects and steps to finding solutions, including strategies and materials, how quickly a problem should be addressed, or the level of help that is needed.

Although the next step crosses the (albeit arbitrary) line from social communication into emotional regulation (which PLT often does even though it seems out of our wheelhouse), SoTP can equip a person to acknowledge feelings of frustration and anger without feeling penalized or shamed. It can teach people to ask: “What do I need to do when I’m upset?” It can teach people to use strategies to calm down and deal with the situation.

This question also ties in to the rule of Cultural Competence. To be culturally competent, the SLP needs to acknowledge their own cultural background and how it influences their perception of other people. We need to recognize that our own identities are complex and dynamic while learning as much as we can about the people we work with. We need to understand differences in values, ideals, and habits without passing judgment. This means admitting that value judgment is an instinctive, implicit process influenced by unconscious personal biases, and that counteracting it involves self-examination and honesty, even when the results are uncomfortable to acknowledge.

With autistic people specifically, clinicians need to consider The Double Empathy problem, which posits that social breakdowns between autistics and non-autistics “are not due to autistic cognition alone, but a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world.” I already linked to the recent study corroborating this theory, but I’m including again because it’s just that important.

To be truly Culturally Competent, non-autistic clinicians who work with autistic people need to start acknowledging autism as a difference in perceiving the world, rather than a disorder that needs to be fixed. We need to understand that PLT from a NT perspective is teaching autistic people how to mask.

Unfortunately there are situations where masking autism is important or even necessary (see Question #2), and PLT can effectively teach some of these skills. The important thing here is to explicitly acknowledge that you are teaching an autistic person how to mask because the NT world is not always ready to accept them as they are. This places control in the hands of the person you are working with, while helping them separate their intrinsic personal value from their ability to “fit in.” Even in these cases, there are autistic people who will reject masking or PLT in any form. Cultural competence means accepting that this decision is valid even when you believe it will create long-term disadvantages.

Question #2: Are Pragmatic Language difficulties causing distress for the person I’m working with?

This is a subjective guideline, to be sure, but it’s an important one. As I mentioned above, many of the skills we target in PLT focus on making a person appear “normal” or making communication partners feel comfortable. However, there are some social skills that impact a person’s well-being in a much more practical way. Examples include:

  • Wanting to interact with peers but not knowing how
  • Frequent and frustrating breakdowns in communication
  • Difficulty clarifying miscommunication or misunderstanding
  • Limited functions of communication (example: the person can use language to share information but not request something they want or need)
  • Difficulty with non-literal language

There are other examples, I’m sure. The trick is to carefully and critically examine the direct, concrete impact that Pragmatic Language difficulty has on a person’s life. Does a student play alone because they prefer it, or do they show signs of wanting to play with peers but being unable or unsure? Do both of these interpretations apply at different times? Does a patient struggle to express themselves clearly even though their language skills are intact? Does a client only make requests because they don’t know how to use language socially, or do they simply prefer interaction to be non-verbal? Can the person I’m evaluating advocate for themselves?

All of these issues need to be examined with regards to Cultural Competence. Does the person you’re working with have similar difficulties when interacting with their family? Religious community? Friends from the same cultural background? Do your research; does a pattern you’ve observed match a social norm from one or more of the person’s identities? If so, this is a difference to be acknowledged, not an impairment to be treated. Educating communication partners may be in order, but teaching the person to pretend to be from a different culture is not.

Also, we need to be very, very, very careful to avoid answering this question with something like, “This person is being bullied” or “This person doesn’t have friends.” In these cases, the person we’re working with is not the root cause of difficulties with social communication; the people around them are. It is not that person’s fault that other people are choosing to bully or exclude them. If you believe that bullying is the person’s fault or responsibility, take a step back. That is victim-blaming, and it is toxic and damaging. This assumption can and will find its way into your therapy, even if you don’t explicitly put it there.

Question #3: Is the communication breakdown affecting the well-being of the communication partners?

This is another tricky one. I’ve mentioned above that a lot of practices under PLT target skills to make communication partners feel comfortable, by teaching people to adopt behaviors and habits that are uncomfortable or counterproductive. It is very easy to answer this question by doing that, such as saying “Yes, this person’s lack of eye-contact makes people assume they aren’t paying attention.” I cannot stress enough that this is not culturally competent or respectful of individual differences. This teaches people how to prioritize other people’s needs over their own, and it’s exactly why I dislike PLT so much.

To teach PLT in an inclusive way, it’s important to look the specific ways that a person’s communication style affects the people around them. Is there discomfort due to differences in culture or identity, or is genuine, unintentional harm taking place? Do a person’s words, tone, body language, etc. make communication partners feel insulted or threatened? Are communication partners unable to express their wants or needs? How do established power dynamics (e.g. gender, body type, race) influence the answers to these questions?

These questions in particular are complicated because we may find ourselves in the position of weighing one person’s perspective against another’s. It is not fair to ask someone to consistently prioritize other people. At the same time, choosing not to qualify a person for PLT could prioritize their perspective over everyone they come into contact with, by saying “this is how this person acts and everyone else needs to deal with it.” How do we respect the person we’re evaluating without doing that?

In some cases, the answer to this question might be to educate communication partners. This includes making people aware of cultural differences, or spreading information about neurodiversity in a way that promotes acceptance and understanding. In the case of genuine pathology, such as difficulty with social cognition due to brain injury or dementia, therapists may give communication partners recommendations for how to interact with the person.

In other cases, direct PLT may be needed to help a person understand the unintentional effect they have on the people around them. Perspective-taking is a particularly good example of this, because it teaches a person how to consider the thoughts and feelings of other people without making value judgments. Again, this puts the power in the hands of the person you are working with. Saying “speaking loudly can make people think I’m angry,” or “people feel frustrated if I don’t give them a turn to speak,” can give a person tools for improved interaction without making them feel like they need to behave in a particular way.

Teaching Active Listening can accomplish something similar, as long as you’re careful to avoid strategies that are counterproductive for the listener. For verbal autistic folks or people with ADHD, Active Listening might include repeating a person’s message or saying “it sounds like you feel __” rather than focusing on body posture or gaze. Again, it’s important to teach these skills as strategies to use in certain situations, rather than behaviors that influence a person’s value or worth.

Question #4: Is personal empowerment built into the therapy program?

Self-advocacy, on the opposite end of the Pragmatic Language continuum, is an important and powerful skill that every person deserves to have in their repertoire. For some people, this means learning to communicate with a variety of purposes such as requesting, rejecting, protesting, expressing preferences and non-preferences, and informing people that something is wrong. For others, this means understanding that their self-worth is not connected to their ability to successfully complete a social skills program. Far too few PLT programs think to include these skills, and the effect on the people we serve can be deeply damaging.

Here are some things that many people who have social and/or cognitive difficulties don’t hear often enough:

  • You are a good person.
  • You have value.
  • The things you are good at matter.
  • Respect, consent, and boundaries work both ways.
  • You have the right to make choices.
  • You have the right to say no to things you don’t like.
  • Your body is your own.

For some people, teaching empowerment means saying these things over and over. A program called the Whole Child approach incorporates these concepts into everything they teach. You are a valuable person, and you can learn and grow and you will still be a valuable person. You can struggle with some things your entire life, and you will still be a valuable person.

For others, it means acknowledging that difference is not wrong. For example, some children are introverted, and that’s fine. Some children want to play with peers but don’t know how. Others alternate between group and solo play depending on mood, energy level, time, or environment. You can teach a child how to play with peers while reminding them that “sometimes kids want to play by themselves, and that’s okay too.”

For other folks, empowerment means making a distinction between social interaction and inherent worth. Take, for example, people who can talk for a long time about specific topics. Although fellow ND people understand and appreciate this skill, NT people often find it bothersome. Teaching empowerment means that while you encourage a ND person to let other people choose the topic sometimes, you also acknowledge that their own passions matter. ND people have important and interesting things to say and they deserve to talk about their interests as much as NT people deserve to talk about theirs.

Unfortunately, the larger world doesn’t often see it that way. Awareness and respect for differences due to race, ethnicity, neurotype, and other cultural identities simply do not exist in a lot of spaces. It’s even worse for people of color, who face additional risks in a world that is constantly viewing them through suspicion, fear, and outright hate. For people with multiple marginalizing identities, empowerment can be dangerous. This is an awful truth that is beyond our scope. All we can do is educate people in the spaces we inhabit and acknowledge that the world is still a very bigoted place.

In the meantime, what do we do? What is our role for marginalized people with pragmatic language difficulties? How do we teach empowerment when self-advocacy for some can result in incarceration, deportation, or death?

I don’t have the answers to these questions. I wish I did, but I don’t. That doesn’t mean they aren’t worth asking; just the opposite in fact. Being inclusive, person-centered, and culturally competent requires us to ask these questions constantly. We can listen, we can learn, we can educate ourselves and the people around us, and we can examine our own biases at every opportunity, in order to help the people we serve in an effective, inclusive, and meaningful way.

Dear Non-Autistics: We need to talk

Published on by Apparently in Deep Contemplation2 Comments

Once again it’s April, the month when stigma and stereotypes about autism reach peak saturation. I’m going to be completely honest with you: this time around, I’m really tired. I’m tired and I’m angry and I’m sad.

I’m not going to hash out, again, why “Autism Awareness” is so demeaning to autistic people, or why “Autism Acceptance” is such an important alternative. That’s been done already. Go ahead and google those terms if you need to. Or read what I wrote last year.

Then come back, because we need to talk about the way non-autistic people treat autistic people, in April as well as year-round. We need to talk about how, with everything that non-autistics assume about autistic folks, they seem to be missing a few key points about themselves.

(I recognize that not all non-autistic people say or do the things I’m going to talk about here.  If you, a non-autistic person, read any of the following and think: “I don’t do that!” then let me take this opportunity to say thanks and ask you to consider what you are doing to call out this behavior in your fellow non-autistics.  Do you already do that? Great. Again, thanks for showing basic human decency. Now, lets work together to bring more non-autistics into your camp.)

So. 

Hi. 

In the post that I linked above, I described a study in which people were asked to rate autistic and non-autistic people, presented in videos, photographs, or text-only transcriptions, against traits including “awkward” or “approachable” and intents to interact, such as “I would want to be friends with this person.”  Participants rated autistic people less favorably (i.e. more awkward, less approachable, less desirable to be friends with) than they rated non-autistics after viewing short videos, long videos, or photographs.  There was no difference between ratings when people read transcriptions only.  From this, researchers speculated that stigma against autistic people isn’t entirely our fault, that personal biases may also play a role.

In a follow-up study, researchers replicated their results with the additional findings that 1) people tend to rate an autistic person more favorably if they know the person is autistic and 2) ratings are influenced by previous knowledge of autism.

In the most recent follow-up study, researchers demonstrated that variation in how autistic people are rated is explained more by individual differences among raters than it is by autistic traits.  If a non-autistic person was familiar with autism and presented with a low degree of negative stigma, they were more likely to rate an autistic person positively – as long as they knew the person had an autism diagnosis.  People who were unfamiliar with or had a negative stigma of autism tended to rate autistic people more unfavorably if they knew about their diagnoses.  

Together, these three studies indicate that autistic people are not completely at fault for being judged and avoided by non-autistics. Anti-autistic bias plays a significant, often unfounded (look at how those biases disappeared when raters couldn’t see the person!) role.

Let’s take a look at some of the biggest autism stereotypes, one at a time. Let’s see if there are any patterns that non-autistic people have been overlooking.

“Autistic people are bad at social interactions.”

This is a big one; if you hold any stigmas about autism, you probably have this one. Autistic people are bulls in delicate little china shops, thrashing around breaking everything and making everyone miserable because we have no idea what is going on or how we’re supposed to behave. Right? Maybe. Maybe not.

The Double Empathy Problem is a theory posited by Damian Milton in 2012, referring to the breakdown that occurs between two people who have fundamentally different ways of perceiving and understanding the world. This is a reciprocal process, meaning neither party is individually at fault. However, non-autistic people are often “wildly inaccurate” when they attempt to interpret the mental and emotional states of autistic people. According to Milton: “Such attempts are often felt as invasive, imposing and threatening by an ‘autistic person’, especially when protestations to the contrary are ignored.” 

Milton later points out that any mismatch in communication between a non-autistic and autistic person is likely to be seen as “more severe” by the former because it is not a frequent occurrence for them.  Autistic people, on the other hand, experience social clashes with non-autistics all the time.

Studies are mixed on how accurate autistic people are at interpreting other autistic people, but first-hand accounts from autistic adults show a tendency to prefer the company of fellow autistics, further suggesting that the perception of social awkwardness is not entirely autistic people’s fault.

UPDATE 4/24/19: A new study from the University of Edinburgh confirms that autistic people 1) share information effectively with other autistic people, 2) enjoy interacting with other autistic people, 3) have a higher rapport with autistic people in a way that is noticeable to people outside the interaction. All of these patterns match the way that non-autistic people interact with other non-autistic people; however they all decrease when there is a mix of autistic and non-autistic people. So, quality of social interaction appears to rely on communication partners having the same neurotype, rather than a specific one.

“Autistic people lack Theory of Mind.”

There’s a video on YouTube that I had the displeasure of watching recently, in which a prominent British psychologist explains that Theory of Mind – the ability to interpret other people’s thoughts and perspectives when they are different from your own – is what separates people from animals, the foundation of what makes us human.

She then goes on to explain, without a hint of irony, that autistic people don’t have Theory of Mind.

The complexities of Theory of Mind (ToM) in autistic people are beyond the scope of what I’m talking about today.  To say that we lack ToM is reductive and untrue, but it’s also not accurate to say that we develop and access it in the same way that non-autistic people do.

That said, saying in an educational video that autistic people are missing a fundamental tenet of humanity shows an significant lack of ToM on her part, either through the assumption that no autistic people will ever see it (false) or that autistic people who do see it won’t care (definitely false).

Also, as I mentioned above, non-autistic people are consistently inaccurate at interpreting the mental states of autistic people. This pattern is hard enough for autistic people who can explain why and how breakdowns happen; for people who lack the communication skills, it can be downright devastating.

For all that non-autistics believe autistic people lack ToM, when it comes to interacting with us, the reverse is often closer to the truth. Some other examples include:

  • Not knowing and/or caring why autistic people don’t always follow complex and arbitrary social rules
  • Minimizing sensory processing needs 
  • Saying, “Everyone’s a little bit autistic”
  • Insisting on person-first language even after an autistic person states a preference for being called “autistic”
  • Assuming autistic people fall into two camps:
    • People who are unable to make decisions about their lives, express preferences (or non-preferences), or understand anything around them (“low-functioning”)
    • People who don’t really have a disability, and thus need no accommodations or understanding (“high-functioning”)
  • Ignoring tips and recommendations for how to communicate with people who have processing difficulties
  • Pretty much everything I’m about to say under the next point

“Autistic people have no empathy”

Autistic people see this one a lot. Empathy – the ability to care about other people’s feelings even when they are different from your own – is something we are told we lack. None of the stigmas about autism are particularly fun to listen to, but this one probably hurts the most, especially given the number of autistic people who describe the experience of “hyper-empathy,” which is the literal opposite.

Also, despite insisting that autistic people are the ones who lack empathy, non-autistics have done the following:

(CN: abuse, ableism, ABA, violence, death)

  • Written and produced a play about how hard it is to parent an autistic child, complete with jokes at autistic people’s expense and a puppet portraying the autistic character.  Here is a Twitter thread with a detailed summary of the play.  For more information, look up #PuppetGate. 
  • Published books, blogs, and videos about how hard their lives are because of their autistic children. Sometimes they film autistic children having meltdowns; other times they give detailed descriptions of how they heroically tortured their autistic child in an effort to cure them.
  • Written an article called “The Perks of Bullying” referring specifically to autistic students.
  • Bullied autistic students significantly more often than they bully non-autistic students. (You can find a link to that study in the same post that I linked above.)
  • Published a video during which a mother described how she almost committed suicide because of her autistic child, but didn’t because her other child was neurotypical.
  • Given professional talks with titles or descriptions that explicitly refer to autistic people as being difficult to work with.
  • Suggested that autistic people are lying about having meltdowns in order to garner sympathy.
  • Said terrible, demeaning things about autistic people who are physically present at the time.
  • Said terrible, demeaning things about autistic people online, then acted surprised when autistic people noticed and called them out.
  • Made terrible, demeaning jokes about autistic people, then apologized to families and caregivers rather than autistic people themselves.
  • Physically and emotionally abused autistic children for a living and called it “treatment.”
  • Restrained an autistic student so forcefully that he died.

There are more examples out there, but this is a long list and I’m exhausted. Hopefully you get the idea by now.  

“Autistic people are rigid and inflexible.”

Last year I was having a conversation with a non-autistic person about how when I’m hiking alone I sometimes get so “in the zone” that I don’t think to make eye-contact and say “hi” to a hiker who passes me.

They were appalled. They told me that if anyone did that to them, they would be furious. They told me I should always say hi to strangers while I’m hiking because if I fell and got hurt, I would want them to come back and help me. 

I asked them to clarify – were they saying they would refuse to help an injured person simply because they hadn’t said “hello” beforehand? That it’s reasonable to expect others to do the same? They clarified: that’s exactly what they were saying.

This story probably fits under a couple different headings, but I’m putting it here because it’s an absurd example of the ways that non-autistics rigidly adhere to arbitrary social norms, unilaterally thinking terrible things about people who don’t follow their rules.

In another example of inflexible thinking, non-autistic people frequently have difficulty accepting that I can be autistic and also have valid clinical knowledge and experience. In almost every conversation about autistic people in a clinical space (even spaces that are designed to be progressive and inclusive), if I don’t immediately label myself as “an autistic SLP,” inevitably someone assumes I am one but not the other.

I have started honest, productive conversations with BCBAs about ABA Therapy, only to be abandoned after I reveal I’m autistic.  In fact, a non-autistic clinician once left a conversation about autism and ABA with me, a school-based SLP, in order to privately continue talking to my non-autistic, neither-clinician-nor-educator wife, even though my wife had already stated that she was not qualified to participate in the discussion. It was wild.

There’s also the widely-held assumption that stimming and special interests are always bad (some links to resources in this post) despite studies suggesting that this is not the case.  There’s the near-ubiquitous insistence on eye-contact despite evidence that it is legitimately painful for autistic people.  

Speaking of empirical studies, there’s also the fact that scientists, like the general population, tend to view autistic traits as inherently bad. 

For example, this book that I love called out the double standards in interpretation of neuroimaging studies. Does more blood flow to a certain part of the autistic brain during some tasks? Either that part of the brain is over-active, or autistics have to work harder on that task. Less blood-flow? It’s under-used or under-responsive. Autistic people don’t get to win when non-autistic researchers make all the rules.

Researchers presume deficits in autistic people even with traits that have clear positives. For example, because autistic children are less immediately possessive of new toys or less likely to be influenced into perceiving or reporting incorrect information than non-autistic children are, these traits are interpreted as symptoms of social impairment. I particularly enjoy the moment in the latter study in which the writers point out that “being less susceptible to social influence resulted in the older autistic group performing more accurately than their neurotypical counterparts” as a brief aside in the middle of their discussion about how this finding is a great indicator of autistic people’s social impairments.

There’s a pattern here. Over and over again, non-autistic people assign stigmas to autistic people, which become so forcefully engrained that it causes them to do and say things that fall under the very stereotypes they assign to us. Sometimes it’s funny.  Sometimes it’s hurtful.  It’s always exhausting.

And I’m tired.  I’m really tired.

I’m tired of defending my personhood to people who make all manner of verbal contortions in order to frame me as being in the wrong.

I’m tired of worrying that non-autistic people are going to take away my job, my driver’s license, my right to vote, or my ability to make legal or medical decisions.

I’m tired of having conversations that inevitably descend into repetitions of “no YOU are a bad person.”

I’m tired of spending a portion of my job trying to undo damaging effects of ABA, only to be yelled at when I point out that this is something I have to do.

I’m tired of being pathologized by people who know I’m autistic, and I’m tired of being incited to pathologize autistics by people who assume I’m not. 

I’m tired of being excluded from clinical spaces and discussions unless I hide part of my identity.

I’m tired of being ignored or insulted when I point out that any of these things are happening.

And I’m tired, so tired, of non-autistics displaying the very stereotypes they assign to people like me in order to deny our humanity.

You Should Read This Book

Published on by Apparently in Deep Contemplation3 Comments
A new copy of the textbook "Autism: A New Introduction to Psychological Theory and Current Debate" by Sue Fletcher-Watson and Francesca Happé

I am not a book reviewer. Sure, I posted a few rants about books I loved (or hated) on a certain unnamed bookish social media site before it got all problematic, but I don’t review books for a living and I probably never will.

I AM, however, an autistic Speech-Language Pathologist (SLP) with an undergraduate degree in Psychology and 5-ish years of clinical experience, preceded by 8-ish years of experience working with disabled adults and children, including but not limited to autistic folks.

So…I sort of know what I’m talking about?

Autism: A New Introduction to Psychological Theory and Current Debate is an undergraduate-level textbook written by two psychologists in the UK. An update to a previous edition written in 1994, Autism provides a concise but nuanced introduction to the scope and variety of behavioral, biological, cognitive, and social theories of autism, while commenting on many of the most hotly debated issues in and around the autistic community today. It’s well-organized, informative, easy to follow, research-based, compassionate to autistic people as well as non-autistic families without ever endorsing the problematic facets of either side, and – most importantly – inclusive of autistic voices at every step.

The book consists of ten chapters: an introduction to autism and the levels of psychological study, the history of autism, behavioral theories and research, biological theories and research, three chapters on cognitive theories and research (primary deficit, developmental trajectory, and information processing), social impacts, and future directions. Each chapter cites a variety of evidence for and against the theories that are presented, critiquing studies where applicable and applying findings to theoretical frameworks and real-life issues.

At the beginning of every chapter is a two-page illustration, by autistic artist Marissa Montaldi, of the concepts and debates to be introduced. Each chapter concludes with a 1-2 page response from an autistic person. These commentators include scientists, doctors, artists, parents, activists, and teachers, with responses ranging from academic reflection to anecdotes, each with the reminder that autistic voices matter in every aspect of these discussions.

Although they are not themselves autistic, Professor Francesca Happe and Dr. Sue Fletcher-Watson frequently emphasize the importance of listening to the autistic community during the research process as well as the development of clinical practice and community supports. As an introductory textbook, Autism does not have time to delve deeply into specific issues or debates, but it outlines most, if not all, of them with careful nuance and compassion. These discussions include:

  • Person-first vs. identity-first language
  • Functioning labels and the concept of severity
  • Applied Behavior Analysis (ABA) and other compliance training
  • Tension between autistic adults and non-autistic families of autistic people
  • Autistic self-advocacy/disability rights
  • The impact of gender on presentation and diagnosis
  • The social model of disability
  • Problems with the concept of an autism ‘cure’ or ‘prevention’
  • The myth of empathy/ the ‘double-empathy problem’
  • “Difference” vs “deficit”
  • In-group/out-group bias between non-autistic and autistic people
  • Pressures placed on families of young autistic children
  • Lack of support for families of autistic people
  • Pseudoscience
  • Autism in the media
  • The role of autistic parents of autistic children
  • Lack of supports for aging autistic people

Issues in clinical and psychological research are also discussed, including heterogeneity among autistic people, difficulty designing robust experiments to test cognitive theories, lack of accessibility for autistic people who want to work in research and academic settings, and lack of testing for theories or concerns originating from autistic people. In one of my favorite quotes, the authors call out researchers for biased interpretations of research results, pointing out that nearly every difference between autistic and non-autistic people is interpreted as an impairment in the former. For example:

In neuroimaging research, differences in blood flow during a task are interpreted to show problems in the autistic group, regardless of the direction of difference from control data. If the autism group shows greater brain activity, they are ‘having to work harder to solve the task,’ but if they show reduced activity, they lack the expected neural specialisation of dedicated brain regions for the key computations!

pg. 45

I have not read the particular research they’re referring to here, but I HAVE noticed this pattern in cognitive/linguistic studies, and it’s incredibly frustrating. To see non-autistic psychologists confronting that in a textbook gives me hope for the future of academia, and I don’t mean that as hyperbole.

Between my undergraduate degree, Masters degree, and 5+ years of continuing education/professional development, I have read and listened to many, many descriptions of theory and/or research related to psychology, communication, and – yes – autism. Very very very rarely do I find academics or clinicians who view autistic people as a valuable part of the process.

In my last post, I included two screencaps of SLP seminars whose titles or descriptions blatantly insulted autistic people, but there are many examples of ableism that I haven’t documented. In the past few weeks alone, I have encountered anti-autistic ableism in two different SLP social media spaces that were designed to be inclusive and progressive. From in-jokes at the expense of autistic children, articles about the “perks” of bullying, lectures referring to “those POOR families,” assumptions that autistic adolescents will never date or maintain friendships without clinical intervention, unexamined celebrations of ABA and the man who founded it, to intentional exclusion of autistic people from conversations about “cures” and “treatments,” it has been clear to me throughout my career that the world of SLP (at least here in the States) does not consider autistic people to be valuable contributors, more or less that we may also be clinicians.

This is not to suggest that only SLPs are capable of system-wide bias against the people we are trying to serve, or that ableism only exists in the US. Look, for example, at that horrible play, or the recent, poorly-researched and reported changes made to driving license documentation in the UK. Look at the new-ish trend of mainstream media feeling shocked and inspired that some autistic people manage to have – wait for it – ACTUAL CAREERS, or the people who respond to those reports by immediately questioning the validity of their diagnoses. Perhaps you’re more interested in the discussions around legal loopholes that allow employers and contractors to pay disabled people less than minimum wage, if they pay at all. Three days ago was the Disability Day of Mourning, an annual tradition to remember disabled people who were murdered by their families. These past several weeks have been rough for autistic people, and it’s not even April yet!

All this to say, Autism was a breath of fresh air for me as an autistic clinician. After years of arguing, dodging, and/or hiding from anti-neurodiversity in my field, it’s easy to wonder if I’m the one in the wrong. Unlearning damaging stereotypes and practices is a long and ongoing process, one that is rarely if ever supported in clinical and academic culture, and sometimes I can feel years of pent-up internalized ableism just waiting to rush back and overwhelm me. This book is one of the first scholarly writings I’ve seen that does not lay the blame for every bad thing that happens to and around autistic people entirely at the feet of autistics, and that change is more valuable than I can possibly explain.

You can order the book from the publisher at their website.

Being an Autistic SLP

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Being an Autistic Speech-Language Pathologist (SLP) means working with students/clients with whom I identify more closely than I do many of my neurotypical (NT) colleagues.

Being an Autistic SLP means seeing descriptions of lectures and seminars that look like this, because speakers assume I’m in on the joke:

Being an Autistic SLP means sometimes having echolalia with the word “echolalia.”

Being an Autistic SLP means cringing internally and bracing myself every time I collaborate with someone who has a background or interest in ABA.

Being an Autistic SLP means that Pragmatic Language therapy usually feels like something I should be receiving rather than providing.

Being an Autistic SLP means I am hyperaware of the difference between social communication skills that are necessary or functional and ones that are merely play-acting in order to blend in with a NT world.

Being an Autistic SLP means that a unique communication profile is so fascinating to me that I could have a one-sided conversation about it for a long time if left unchecked.

Being an Autistic SLP means I will target “looking at a communication partner,” but I will not demand eye-contact. It also means I understand why the difference is significant, likely better than my NT colleagues do.

Being an Autistic SLP means that burnout is a very real and constant threat. Being Autistic means I need to pace myself or I will crash, that the act of pacing myself is itself an expense of energy. Being an SLP means that pacing myself is discouraged at almost every turn.

Being an Autistic SLP means reducing the stigma of using fidgets because I allow myself to use them during speech sessions.

Being an Autistic SLP means I know how to use a person’s stims and special interests to motivate, inspire, and develop skills, instead of forcing them to constantly suppress.

Being an Autistic SLP means I understand and acknowledge the difference between wanting to play alone and wanting to play with peers but not knowing how. It means I know exactly why this difference matters.

Being an Autistic SLP means that without Google Calendar and its Task Pane, I would never get anything done on time.

Being an Autistic SLP means I hyper-empathize with people I work with, including coworkers, students/clients, and families. If I let myself, I will feel each problem as if it affects me personally, and I will have a difficult time extracting myself from it.

It also means that from time to time I may appear not to empathize at all, because I’ve taken on so much that I need to disengage or I will melt down.

Being an Autistic SLP means that I’m doing at least twice the emotional labor that my NT coworkers are doing just to get through a workday in which we have the same or similar tasks.

Being an Autistic SLP means working so hard to mask while I’m conducting therapy, consulting, or attending meetings, that I rarely if ever socialize during work downtime. It means NT coworkers may see me as shy at best and unfriendly at worst, when in reality I am prioritizing how I spend my limited emotional energy.

Being an Autistic SLP means that I lack a thick skin; at best I can pretend to have one until no one is looking. It means if a parent yells at me during a meeting, I may not be able to conduct therapy for the rest of the day.

Being an American Autistic SLP means belonging to a professional organization that holds a very strong bias against people like me. It means being part of a culture that does not believe I exist.

Being an Autistic SLP means that if a student/client or family member is trying not to cry, I will likely remain unaware until the first tears fall. It means that if I’m talking when this happens, I will blame myself and perseverate on everything I said and did for a long time after it’s over.

Being an Autistic SLP means that adapting to sudden change is difficult or exhausting for me. I do it because I have to, but I may need to compensate in ways that seem strange or unrelated. When you pass me in the hall and I am looking at the floor while flexing my fingers instead of smiling and saying “Hi,” it may be because three students were unavailable and/or I’ve been called in to a last-minute meeting or observation.

Being an Autistic SLP means I will email caregivers instead of calling them whenever I possibly can.

Being an Autistic SLP means that not only will I insist that you give students/clients time to process what you’ve said, but I will also find ways to get you to do that for me. It means that if I really trust you, I may even ask directly.

Being an Autistic SLP means that I show up for meetings exactly on time because I don’t have the energy for the small-talk that inevitably happens before they start.

Being an Autistic SLP means that you may very well find me pacing, gesturing, and/or whispering about anything from the development of voiceless fricatives to effective word-retrieval cueing techniques to the importance of Core Vocabulary on a communication device. It may not even be relevant to someone I work with; I just like thinking and talking about it.

Being an Autistic SLP means that I needed this game in my life ten years ago, and I am anxiously awaiting its release.

Being an Autistic SLP means that interacting with Autistic students/clients is usually easier for me than interacting with NT coworkers or caregivers. It is probably related to the fact that I am more comfortable with Preschoolers than Middle or High Schoolers.

Being an Autistic SLP means that occasionally I am too dysregulated to conduct therapy, and I’m going to need you to trust that when I make that call, it’s for the students’/clients’ good as well as mine.

Yes, being an Autistic SLP means that things that NT colleagues find intuitive or effortless are difficult or downright impossible for me, but it also means that I will see things they don’t. I will feel things they don’t. If they can trust that I exist and I can trust that they won’t pathologize me, we can learn a lot of valuable things from each other.

“In a world that doesn’t want queer people to be happy, queer joy is subversive.”

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This was the thesis statement of the first panel I attended last weekend at Flame Con, an annual comics convention in New York City for LGBTQ+ people.  This panel “The Subversive Simplicity of Queer Joy” provided a much-needed affirmation that queer people – in fiction and in real life – deserve happiness just as much as cisgender-heterosexual people do, even if most of the world doesn’t want us to have it.

Flame Con is a utopian rainbow bubble full of magic, wonder, inclusion, and uninhibited joy. Flame Con celebrates people’s differences and tells queer people of every race, ethnicity, ability, neurotype, religion, age, and gender: “You are not alone and you deserve to be happy.” Purely by coincidence, the day before the con I also attended an unrelated event celebrating queer love and joy in the real world. For me, these two events could not have come at a better time.

Warning: I’m going to talk about death and violence in fiction.  I will not name names and I will be as vague as I can.

This means I can’t provide links as often as I usually do.  Instead, from time to time I’ll mention a term to research if you want more information. Be warned that you will likely encounter spoilers if you choose to do that.

Again: if you don’t want to read discussions about non-specific queer character death, you’ll want to leave this page now. I understand.

Anyway.

This past weekend, I spent three days in spaces where the idea that queer people deserve happiness was not in dispute. This provided a refreshing change from the past two weeks, as well as the 12-13 years before that, when queer joy has been refuted or rejected with alarming consistency.

Queer characters, despite under-representation in mainstream media especially, are disproportionately killed in fiction.  This pattern includes movies, television shows, books, podcasts, video games, and comics. Even fan-created webseries are not above giving queer characters the axe.

(For more info, look up “Bury Your Gays.”)

This of course means that many queer characters who are still alive at the end of their stories are mourning the death of a significant other.  There is a history to this: In the first half of the 20th century, films and books were prohibited from portraying gay or lesbian characters who did not eventually die or marry a character of a different gender.

(For more info: “Motion Picture Code,” “Lesbian pulp fiction.” I don’t know if there were rules about transgender characters, but I think I can make an educated guess.)

Although those rules aren’t technically in place anymore, the pattern remains. To this day, stories about LGBTQ+ characters disproportionately end in tragedy and grief.

An article in The Guardian in 2013 (linked article contains SPOILERS for several pre-2013 films featuring LGBTQ+ characters) stated:

Whether it’s suicide, AIDS (a particularly maudlin [Actor] performance in [Film] employs both), being beaten to death, state execution, getting shot, or getting raped and then shot, LGBT characters are just not allowed the happy endings that their straight counterparts enjoy. My personal favourite comes from [Film Title With Link to Said Film], in which [Actor] simply drops dead for no reason. Presumably overwhelmed by sheer homosexuality, his heart can no longer keep beating. Beware, non-heterosexuals: Sudden Gay Death Syndrome can strike anywhere.

The first time I saw a romantic relationship between same-gender protagonists on mainstream television, I was in my late teens. I felt drawn to them, fascinated by them for reasons I could not identify. This beautiful couple grew, struggled, and overcame hardships together, and I fell head-over-heels for them before I realized they were like me. This relationship formed one of the first steps of my (very) long journey towards self-understanding.

Then one of them died suddenly and unexpectedly. The other spent the rest of the series in various stage of grief and heartbreak as she gradually overcame the loss. Even though other characters on the same show died before and after this character did, her death in particular ripped me apart for reasons I did not understand at the time. It was not until several years later, when a different show killed off a fan-beloved lesbian character, that I started to find the words to explain why the experience of grieving a queer character was so different from mourning a straight-cisgender one.

The over-representation of LGBTQ+ character death can cause real damage to queer people who are beginning to understand their identity.  Representation in fiction is a powerful tool that can shape the identity and self-worth of its audience, but it is also a dangerous one.  How can it be safe for queer people to own who we are if all that awaits us is tragedy? How can we learn to value ourselves when media is constantly telling us we deserve to die?

Since queer character death is so frequent in fiction, there is a ton of variation in terms of how it is presented and how each incident fits into its respective narrative.  For example, there are contexts where character death is more likely, including war, dystopia, frontiers, and historical or pseudo-historical settings.  In narratives that involve action, violence, and risk, it’s unrealistic to expect all characters to survive.  Even though LGBTQ+ people form a very small percentage of these characters, its neither fair nor practical to ask each one of them to be spared.

Sometimes the death of a character – queer or otherwise – serves the plot in a way that is organic, meaningful to the story, or respectful to the character.  Obviously that judgement call that will vary from person to person, but it’s not productive to pretend that well-written queer character death isn’t possible.  Also – especially with long-running television shows – there are times when a character must be written off because the actor is no longer available to play them.  In these instances, death may be the most reasonable way to make this work with the narrative, rather than performing plot-aerobics to remove that character permanently .

That said, there are several patterns that can make instances of queer character death more problematic than they already are. Frequently, the death of an LGBTQ+ character is directly related to their queerness; examples include AIDS, hate crimes, or suicide.  Many queer characters die minutes after confirming or advancing a romantic relationship and/or sleeping with a character of the same gender. Alternatively, they may be killed off in the same episode or book in which their relationship was confirmed, advanced, or revealed to other characters.  These plot decisions tell the audience that queerness is the reason these characters died.

Queer character death can also feel pointed if the death doesn’t serve the narrative or fit the setting.  Again, this point depends on subjective judgements made by readers or viewers.  Still, when a cis-het character dies in a way that feels incongruous with the story, it may be seen as bad writing or death for shock-value (or one of a number of other problematic tropes).  When it happens to an LGBTQ+ character, it fits into larger pattern which suggests that creators see queer characters as dispensable or don’t know how to write LGBTQ+ stories with happy endings.

This interpretation carries even more weight in stories where only queer characters die, in endings that show most or all cis-het characters still alive while the one, if any, remaining LGBTQ+ character grieves.

Regardless of individual circumstances, the sheer number of queer character deaths in relation to the number of queer characters in fiction is so disproportionate that it sends a message on its own.  In contrast, the underrepresentation of queer stories with happy endings, especially in mainstream media produced by larger corporations, is staggering.

(For more info, check out this infographic about dead lesbian and bisexual women characters on TV. Obvious warning for SPOILERS for a whole bunch of shows released in or before 2016.)

Yes, there are a lot of complicating factors to the “Bury Your Gays” trope.  Almost inevitably, especially in recent years when this trope has been getting more attention from mainstream media, every time a queer character is killed off we have the same conversation.  Each time, we ask if this particular death made sense in this particular instance. No detail is left unturned. There are productive and unproductive arguments from both sides of the question.

The trouble with the “This Time It’s Okay” argument is mainly that it ignores or dismisses the larger context where LGBTQ+ character death keeps happening.  Over and over again, we watch queer characters die. Again and again, we witness the one surviving queer character grieve while the cis-het characters enjoy happy endings.  Even in the best of circumstances, queer character death is problematic simply because it exists in a world that feels that LGBTQ+ characters – and by extension, real people – do not deserve the same joy as their cis-het counterparts.

Here’s a (spoiler-free) quote from the writer who created the infographic listed above [brackets are my additions]:

Stories exist in imaginary worlds but they are consumed in the real world, where, just this week [March 2016], North Carolina passed sweeping and unprecedented anti-LGBT legislation. And where three presidential candidates don’t believe gay people should have the right to get married [update: neither does the current Vice President]. And where a gay person can be fired simply for being gay in most states [still true]. And where LGBT youth homelessness is rampant [yep]. And where LGBT bullying occurs with alarming regularity in schools [definitely still true].

We need hope in stories. We need light in stories. And we need stories to work their magic in the lives of the people who would oppress and persecute us because we’re gay. Stories are fatal to bigotry.

To care about story isn’t to ignore the darkness of the real world; to care about story is to put your hope in something that changes the real world, more than anything else. There’s a reason all religious texts are made up mostly of stories. There’s a reason the same-sex marriage approval rating in the U.S. rose in direct proportion to the number of gay characters on television. Story gets inside us and changes the alchemy of who we are.

And yet, over and over again we have the same conversation. The same points are hashed out time and time again. It’s frustrating and discouraging. It’s exhausting.

Several years ago I came across an award-winning graphic novel in a bookstore. I had heard of it among recommendations for stories centering same-gender romance, so I picked it up. As I was reading the summary and studying the cover art, a feeling of dread washed over me. I had already had the ‘Bury Your Gays’ conversation more times than I could count.  Over and over again I had let myself become invested in LGBTQ+ characters, only to watch their stories end in tragedy. Again and again I had bemoaned queer character death with (mostly queer) people who understood and (mostly non-queer) people who didn’t. At that moment, I realized that it was not worth putting myself through that again, even for the best of stories.

I flipped to the last few pages of the book, and there she was: one of the main characters, standing alone and sad at the other’s grave.

I closed the book, put it down, and walked away. That has been my pattern ever since. Movie/show/book/comic with queer characters in it? Great. Tell me how it ends.  Still ongoing? I’ll wait. A queer character dies? No thanks.  There are occasional exceptions of course, but for the most part I stick to this rule.  Honestly, I’m so grateful that I’ve done this. Yes, it means that my consumption of LGBTQ+ stories is significantly limited, but to me it’s been worthwhile.

For one thing, I haven’t been blindsided by queer character death in over a decade.  On the rare occasions when I do choose to read or watch a story featuring queer character death, I can brace myself for it. Some people may argue that knowing ruins the story, but if the story doesn’t have an emotional impact without a sudden, unpredicted death of an LGBTQ+ character, then to me it’s not worth investing my time or energy.

At the aforementioned Flame Con panel this weekend, one of the panelists talked about the value in reading or watching stories by creators who value queerness. When queer audiences know or trust that all the queer characters are going to survive, we can relax into a story and become emotionally invested in the characters, enjoying the adventures without the feeling of dread that comes with a queer character whose fate is unclear.

So why, after a weekend of constant affirmation of the value of queer joy in fiction and real life, would I write a long post complaining about queer tragedy?

Two weeks ago, ‘Bury Your Gays’ took me by surprise for the first time in almost a decade.  Without knowing it was going to happen, I saw one queer character die and the other grieve, while all of the cis-het characters in the ensemble cast – including at least four different-gender couples – enjoyed happy endings.

And yes, it hurt just as much as it did all those other times.

*(If you’re curious, Google “bury your gays 2018 backlash.” Also, you’re welcome for the amount of time I spent trying to find a search term that wouldn’t give anything away.)

So yes, I’ve spent the past two weeks having conversations that I had witnessed* but not directly engaged in for several years.  In the midst of this emotional hurricane, I’ve rehashed all the same points with people who feel that this specific instance is different, that under these circumstances queer character death is acceptable.  As usual, arguments on both sides range from calm and productive to hurtful and inflammatory.  Nothing about this situation is new.

*(Look up “bury your gays 2016 controversy”)

This. Keeps. Happening. Again and again we have these conversations. Over and over, queer viewers express anger and disappointment and are told we need to calm down.  We try to defend our right to survive and be happy, and we’re told that we’re over-reacting, that our expectations are unreasonable and it’s our fault for letting them get so high.  We point to the number of fictional queer casualties and are told to be grateful that queer characters exist at all.  We point to the demographics of the characters who are allowed to find joy, and we’re told to accept the story for what it is.

In the past decade, I’ve had this conversation more times than I could count, which is nothing on people who haven’t gone out of their way to avoid queer character death as I have. I can only imagine how they’re feeling.  Because I’m tired.  I am so very tired.

Which is why this weekend could not have come at a better time. Apart from one 3-minute incident from which I was able to extricate myself, Flame Con provided an affirming and invigorating experience in which attendees were told, time and time again, that our existences mattered, that our experiences mattered, that we deserve happiness and joy and we are not wrong to be upset when we are denied that.

Unfortunately, asking for that, even creating it, is a subversive act.  People who write queer stories are counteracting decades (almost a century) of media asserting again and again that queer characters can exist but they cannot be happy. A silly rom-com becomes an act of subversion when the main characters are the same gender; a fluffy teenage comedy with a transgender protagonist is a downright insurrection. Creating these stories, and supporting the people who do, is a political act, an inflammatory statement in a world that does not want to see LGBTQ+ people be happy.  But we do it.  We need it. Because queer people deserve joy too.