Welcome to the first episode of “Autism and The Human.” I’m Limbic Noodle. Today’s episode is called “Limbic, Liminal, Labels and Language.”
I want to talk to you today about how I decided to call myself Limbic Noodle online.
The limbic system is the part of the brain involved in behavioural and emotional responses. It’s particularly true when we are in survival mode. It’s also true when we are in fight, flight, or freeze mode.
The way this connects to autism is that the discourse around autism is often focused on the behavioural and emotional responses of autistic people. The personal narratives of autistic people often include stories about struggling to become Enabled in a Disabling world. To me, “Autism” and “Limbic” are intrinsically related. I came to “Noodle” a little more circuitously. The first reason for this part of the name is that I find brains to resemble fat, wet noodles. I also realized that I liked the work “Limbic because it reminded me of “Liminal,” one of my favourite words and concepts. Liminal spaces are generally considered empty and often exist between one destination and another. What’s sad and alarming is that many people think of those on the spectrum as empty space, existing slightly beyond the borders of “The Human.”
It will become clearer what I mean by “The Human” throughout this podcast. For now, think about the lines sometimes drawn between what is considered “Normal” and what is maligned, marginalized, and attacked as “Abnormal.” Think about what causes stigmatization when a person is placed outside the boundaries of “The Human.”
Sometimes I imagine myself sliding in and out of these boundaries, noodling between the liminal and non-liminal, lingering in empty spaces where I am less likely to be singled out or noticed negatively. These spaces have always felt safer to me.
Liminal Spaces aren’t just empty. They’re spaces that make you uncomfortable or unsettled, thresholds to something new or different. They’re transitional and transformative spaces.
There are both Mental and Physical liminal spaces. We’ve probably all read or watched a coming-of-age story. Think about a movie like It or a television show like Stranger Things, where twelve-year-olds face a monster that serves as a metaphor for the terror and confusion of transitioning into adulthood. The age of 12, when a child teeters on the precipice of adulthood, could be described as a Mental liminal space. It’s an age that feels frightening.
Another non-physical liminal space forms when faced with life-changing events like divorce, job loss, or moving to a new place. These moments in life when catastrophic shifts occur, for bad or good, force us to examine our priorities. Some people call them “Existential crises,” as they cut all the way down to our existence.
Physical liminal spaces are places that make you feel “off.” They are places where past and present converge, where the past begs you not to repeat its mistakes. They’re also spaces like stairwells and hallways, which we use to move from one location to another. They aren’t places most of us feel comfortable lingering. On the other hand, they often are places we retreat when we need the world to stand still for a beat.
Reflecting upon the idea of liminal spaces made me think about how Autistic people connect across these spaces, or maybe even inside of them. We connect through shared experiences, common ways of moving through the world, and strategies for surviving in neurotypically dominated spaces. This reflection inspired a mental image of noodle-like strands extending across liminal spaces, connecting autistic brain stem to autistic brain stem. This solidified the symbolic significance of “Noodle” as part of my online identifier.
There’s so much more to a person’s identity than a name. As an English teacher, I can’t help thinking of Shakespeare telling us that a rose by any other name would smell as sweet. In light of this sentiment, it might be especially ironic that discourse around autism often doesn’t get a chance to progress further than conversations around the language of identity. I am sure people are listening to this podcast and mentally correcting my language choices. After recently reading Nick Walker’s book, “Neuroqueer Heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities,” I realized there is vocabulary I have misused over the years for a variety of reasons. Ignorance is one of these reasons. However, that makes this discussion even more important.
Up to this point, I’ve consciously decided to use a variety of vocabulary choices, specifically to prevent people from making assumptions about where I position myself before I have the chance to explain my preferences.
“Person-first” versus “Identity-first” language is the center of the derailing discourse to which I already alluded. The “Person-first” position says that one’s personhood should be emphasized more than one’s “Condition.” They view Disability and autism through the Medical Model of Disability lens. In a later podcast episode, I will delve more into the Medical Model of Disability versus the Social Model of Disability. I will briefly outline the difference between the Medical and Social Models of Disability. In “Neuroqueer Heresies,” Nick Walker said that the medical model refers to “Disability” as an impairment or a defect in the body and/or mind. According to Walker, this model sees disability as something a person “has” rather than being essential to who they are (Walker, 61).
The social model of disability developed from the disability rights movement and remains a fundamental understanding of Disability Studies today. Nick Walker said in “Neuroqueer Heresies” that within the social model, “Disabled” is understood as being the opposite of “Enabled.” Society seems to be set up to enable some people to participate and meet their needs (Walker, 61). Walker points out that Autistic people do not “have” a disability in this sense. Instead, they are disabled, to a greater or lesser extent, by their ability to participate in society and meet their needs.
I want to emphasize that most disabled people would prefer you don’t say “person with a disability.” Most autistic people would prefer you say “Autistic” or “Autistic Person” rather than “People with Autism.” Saying “Autistic Person” rather than “Person with Autism” goes beyond framing autism through the social model of disability lens. Apart from recognizing autism as intrinsic to one’s identity, it is also an expression of community and culture. The language that sprang up with the concept of the Neurodiversity Paradigm also does this. I will be speaking rather briefly about this language today. I will expand on this topic in the next episode.
Amy Sequenzia, a non-speaking Autistic, multiply disabled activist and writer, has written many articles about the Identity-first versus Person-First discourse. In “Person first language and ableism,” Sequenzia uses a quote from Lawrence-Carter Long to emphasize their reaction when people say things like they see the person, not the disability. Lawrence-Carter Long said, “If you ‘see the person not the disability’ you’re only getting half the picture. Broaden your perspective. You might be surprised by everything you’ve missed. DISABLED. #SayTheWord” (Sequenzia, 2016).
In “Disabled, not broken,” Alex Forshaw said that some people are only disabled because society does not enable them to do certain things the way other people are enabled. For example, imagine if a building were built off the ground, without stairs to the entrances. Everyone would be disabled from entering that building in similar ways. Buildings with stairs enable those who can use stairs to enter the building. When those same buildings do not have a ramp, wheelchair users are disabled from entering the building. Alex Forshaw warns against using the word “Disabled” in a way that connotes brokenness. Brokenness is a loss of integrity, a shattering and fragmentation that reduces one to a shard of “The Human” rather than a whole person. By disabling a person from participating completely, society takes a whole person and makes them feel like they were a broken shard.
The sad thing about our society is that “Dependency” is a dirty word. We see this attitude born out within the patriarchy, where women and children are considered subjects of men because they are dependent. The word “Disabled” is viewed negatively. It is regarded as a synonym for “Dependent.” We see the term “Differently Abled” promoted as an alternative due to how desperate people are to disassociate themselves with the concept of dependency. It suggests that if a person tries hard enough, they might find a different set of processes to accomplish a task they are currently disabled from completing, causing them to depend on someone assisting them. So what happens when that isn’t the case? What happens when no workaround will allow an individual to accomplish a task other than depending on another person to assist them? What happens when society refuses to find means to Enable, which might reduce the Disablement some members of society experience? Do those people enter a state of subjectification, like the women and children who were thought to be the subjects of men because they were dependent?
Social conservatives would probably say that feminism is to blame for the negative connotations the concept of “dependency” has today. I would argue that feminists generally support the idea that it takes a village to raise a child. I would also say that feminists want an equal division of labour within households. Therefore, aren’t they promoting interdependence over patriarchal dependence and subjectification?
Sometimes I wonder if the way some people in the United States of America attack anything they think could be related to communism and socialism helped make the negativity around the concept of dependency worse. As a Canadian living in the province where Tommy Douglas created universal health care, I am comfortable with many socialist ideals. Some people would interject here to point out that Tommy Douglas made Universal Health Care, but he also wrote his thesis on Eugenics. History tends to build monuments only to tear them down later. This dualism is a nuanced subject of debate I will save for another time. The point is that not everyone at every point in history has viewed the concept of dependence with as much negativity as it is generally ascribed today.
Neoliberal Capitalism attributes value to individuals based on a cost versus contribution formula. The cost to support a person is measured against what they contribute to society. If a person cannot contribute their labour, they often become a product to be commodified. Autistic people have been turned into products within industries that have been built to provide non-autistic people incomes, all while Autistic people continue to struggle. These include the Applied Behaviour Analysis practitioner and autism advocacy industries. I feel this acutely because I have a dream to become a Neurodivergency Inclusivity Consultant within the Saskatchewan school system. The problem with this dream is that I would be promoting Neurodivergent Pride and Acceptance and trying to teach people about Neurodivergent Culture, all while slamming up against a wall of Assimilationism. I do not see my dream as achievable when so many jobs depend upon Autistic people remaining the products of the ABA industry.
The term “Neoliberal Capitalism” has nothing to do with Liberalism as the orientation of a political party. It refers to market-oriented reform policies such as lowering trade barriers, eliminating price controls, and deregulating capital markets. Neoliberal policies disproportionately impact disabled people through implementing austerity cutbacks and privatization of health services. Suppose you want to understand what I mean by neoliberal capitalism. In that case, I suggest you read “The Shock Doctrine” or “Enough is Enough” by Naomi Klein, a journalist and author I am proud to call a fellow Canadian.
I’ve had difficulty using “Disabled” to refer to myself. It feels negative in a way Autistic does not. Autistic feels like a part of who I am. Disabled feels like something that is being done to me. Being “Invisibly Disabled” makes it worse. As an “Invisibly Disabled” person, I have discovered it can be downright scary to claim the word “Disabled.” I have been verbally attacked for using it, accused of diminishing the impact of the word by applying it to “Minor Inconveniences.” To this day, I find that I am slower to use the word “Disabled” than I am to use “Autistic.” I think this is because I’ve also seen people quicker to correct and discourage my use of this word than many other words that are part of this language debate.
Amy Sequenzia summarized one argument people make for using “Person-first” language, “See the person, not the disability” (Sequenzia, 2016). This statement presumes Disability to be negative, also presuming the negativity of autism. It also seems to accomplish the opposite of what it aims to achieve. After all, how can someone claim to see us as people if they simultaneously ignore us? This goes beyond just listening to us when we say we want “Identity-first language.” How can you claim to support us while also ignoring us when we tell you to call us Autistic? I can’t help thinking that it comes down to why disability has such negative connotations in our society. We aren’t supposed to be supported. We are supposed to be independent. If we cannot be independent, we are supposed to…..Well, that’s the question, right? What is the end of that sentence? Are we supposed to adapt? Overcome? Disappear? There are arguments out there for all three.
Sequenzia summarizes another common argument for “Person-first” language, “You are much more than your disability” (Sequenzia, 2016).
First of all, no kidding. We all are more than just one thing. It might blow some people’s minds to find out there are people in this world who are black, women, poor, disabled, and LGBTQIA.
Regardless, as Sequenzia points out, we don’t go around saying someone is a “Person with womanness” or a “Person with Indigenousness.” We don’t refer to someone as a “Person with Doctorness” or a “Person with blackness.” When viewed this way, it seems equally ridiculous that we’d refer to someone as a “Person with Autism.” Sequenzia responded to the idea that disabled people are much more than their disability by saying, “You will try to say that a disability does not define me. How do you know it doesn’t? I define myself and my disability does define me. You are being ableist by telling me how I should feel about being Disabled” (Sequenzia, n.d.).
Aria Sky (a.k.a. Mamautistic) said that autism is always present for them and completes them (Sky, 2017). I agree with Sky’s sentiment that they would not be who they are without autism. There isn’t a single part of my identity that isn’t wound up with autism. For example, I have two bachelor’s degrees, and I am writing my Master of Education thesis. Thank you, Autism. Some of you might be scratching your head on that one, but I absolutely attribute my ability to perSever to autism, and no, I don’t mean persevere.
On the other hand, I have not always lived up to the ideal of independence. Being a single parent isn’t easy, especially when the children are young. I needed help. Some people would see admitting to needing help as an admission of failure. I think it is an acknowledgment of my limitations. I struggled with depression, anxiety, and executive functioning when my children were younger. Getting help from family made me a better parent.
In a blog called “Musing of an Aspie,” Cynthia Kim describes two women. One is named Mary, and the other is named Joan. Mary is described as a wife in a stable marriage and a mother who consistently carries out typical parental duties such as parent committees, carpools, and coaching. They are described as having stable employment since the age of 16. They also are described as carrying out tasks such as financial management and cultivating a variety of hobbies.
Joan is described as a wife in an occasionally rocky marriage. They do not have close friends, often preferring to isolate themselves, especially avoiding phone calls. They are described as needing to be reminded to carry out grooming activities or get dressed in the morning. Joan has never done anything like negotiate a car loan, and they’ve never lived alone. They like familiar comforts such as watching Disney movies at the end of a tough day.
It turns out both women are imaginary, created by Cynthia Kim and based on descriptions of themself, depending on what was happening in their life. This duality is relatable to me. As already described, I could describe myself as a successful student and parent, but I could also describe myself as a depressed parent who needs help from others to manage my children. Depending upon the circumstances, either could be true.
My functionality fluctuates. I like to think that I’ve become steadily more consistent. At this point in my life, I am 15 years clear of my abusive marriage, the parent of teenagers who make my life pretty easy as opposed to young children, and a seasoned teacher. My circumstances allow me to function more consistently as a “Mary” these days rather than as a “Joan.” If I follow through with Cynthia Kim’s analogy, being more of a Joan is not inherently negative compared to being a Mary.
Who among us can say that their ability to function in the world has never faltered or failed when their circumstances have changed?
Those who position themselves on the “Identity-first” side of this discourse would say that people shouldn’t need to be reminded that Autistics are complete people. “They use person-first language and forget our humanity,” Amy Sequenzia said (Sequenzia, 2019). Humans are assumed to have the right to define themselves. Sequenzia noted that if an autistic person wants to identify themselves with “Person-first” language, they respect their wish. To the rest, Sequenzia suggests that a safe bet would be to use “Identity-first” language and let the person correct you if their preference is “Person-first.” Another option is just to ask them about their preferences.
I know there might be listeners out there saying it is presumptuous of Sequenzia to believe that just because they prefer “Identity-first” language means most autistic people share this preference. My response would be that it is presumptuous to think autistic people haven’t made enquiries regarding these preferences and paid attention to the responses.
On the other hand, “Autism Speaks” tweeted on July 22, 2019:
Do you prefer person-first language or identity-first language? Choose which you prefer and then reply to tell us why as well as your connection to autism. Thanks!
As far as I am concerned, the only acceptable response to the question about the connection to autism would be that the responder is Autistic. However, I acknowledge that Autism Speaks was trying to include a broad audience. All that being said, the response was overwhelmingly one-sided. 81.5% of respondents chose the answer: I am autistic. 18.5% of the respondents chose: I have autism.
As of 2022, the front-facing page of Autism speaks Canada still read:
“We invite you to join us in our journey to create a more inclusive and kinder world for people with autism” (Autism Speaks Canada, 2022).
Autism Speaks asked a very specific question, received an undeniably one-sided answer, and proceeded to ignore it. Why are Autistic people and others on the “Identity-first” side of this discourse being ignored? As with most instances where a marginalized group is ignored when speaking for and about themselves, it is connected to power dynamics. Sequenzia said that the media and editors do not respect disabled people. They bend to the majority’s preferences and try to bully disabled people into doing the same. Sequenzia said that some editors simply changed the words disabled people used to refer to themselves without consulting the disabled people in question.
Sequenzia said that person-first language is not about looking out for the sensitivities and dignity of disabled people, evidenced by the fact that, for the most part, we did not ask for it and were not consulted. Sequenzia said the push to use person-first language is about making non-disabled people feel like they are protecting disabled people (Sequenzia. 2017).
If these language choices were about us, they’d listen to us when we tell them it isn’t what we want. It is fair to wonder exactly how valid and “human” they believe our voices to be, given how easy it appears to be for them to set aside our wishes.
The blogger of “Stims, Stammers, and Winks” said that the emerging Autistic Lexicon is proof of the existence of autistic culture. This lexicon is being used to resist oppression and ableism. This probably is why the majority of people insisting upon the use of person-first language are not autistic. The “Stims, Stammers, and Winks” blogger said, “It is important to specify that such words serve two main functions: creating a language of our own and resisting abusive and ableist pathologization” (Stims, Stammers, and Winks. 2013).
Acknowledging an Autistic culture might lead one to conclude that autism doesn’t need to be overcome; a possibility at least one industry has a vested interest in resisting. If the existence of an Autistic culture is acknowledged, one might conclude that all the talk about curing autism is akin to attacking other cultural groups. One might start to think about different cultures that had outsiders to their culture say they needed to be “cured.” People might begin to recognize the implicit Eugenics mindset in this speech.
Autism doesn’t need to be cured. It is alright to be autistic. It’s more than alright to be autistic.
However, there are industries built upon the pathologization of Autistic personhood and culture. I can relate to Dr. Dawn-Joy Leong’s frustration at how many non-disabled people claim to be disability experts and correct them on their use of self-identifying terminology. I envision becoming a Neurodivergency Consultant for a Saskatchewan school division. Still, I would have to compete with non-autistic people who followed the non-autistic trends in Applied Behaviour Analysis and person-first terminology. Dr. Leong said that she was told they should be grateful to be given a platform when they asked for honorariums for speaking, while non-autistic “experts” were paid for their time without having to ask (Leong, 2020). This is especially infuriating when one knows the rate of Autistic unemployment and underemployment.
Right now, I am working hard on creating scripts for this podcast without knowing if I will be able to find a way to benefit from my effort financially. Meanwhile, there are industries full of people making a living from speaking for and over Autistic people. Our Autistic existence is being commodified to provide a living for non-Autistic people. Therefore, it is fair to say that they have a vested interest in speaking for us and over us. Multi-million dollar corporations like Autism Speaks might have more legal “Personhood” under the law of the United States of America than the people they claim to represent. These corporations have a vested interest in denying the existence of a preferred Autistic lexicon directly connected to an Autistic culture.
Nick Walker said that autistic activists began to develop a shared understanding that they belonged to an oppressed group. In their book, “Neuroqueer Heresies,” Walker talks about how these activists began to recognize patterns of oppression experienced by autistic people that mirrored the patterns of oppression experienced by other oppressed groups. As awareness of these patterns developed, Walker said autistic advocates realized the need for new vocabularies to help express these ideas (Walker, 2021).
Identity-first language choices are restricted to saying “Autistic” rather than “Person with Autism.” Other identity-first words have become part of the Autistic lexicon, including Neurodivergent, Neurodiverse, Neuroqueer, and abbreviations such as Autie and Aspie. The term “Changeling” is a less common choice. I will begin by speaking about the word “Changeling” because I am least familiar with its uses. The blogger of “Stims, Stammers, and Winks” writes about the usage of this word by autistic people in a post called “Revolt of the Changelings and the Feral Children: Reuniting with Autistic ancestral spirits.” This blogger, who does not identify themselves by any other name than that of the blog, describes themself as a queer, disabled writer. In the mentioned post, the blogger said it was a lecture in a “Foundations of Disability Studies” lecture that helped them make connections between the historical and mythological views of disability and their hobby of playing Dungeons and Dragons. They say that disabled children in the middle ages were called changelings. They say the children, called changelings, “were assumed to be put in place of children by demons and whose parents were thought to be witches and warlocks who had been cursed by Satan or other evil gods for their sins” (Stims, Stammers and Winks. 2013).
Changelings in the role-playing game “Dungeons and Dragons” are shapeshifters, wanderers, masters of disguise and concealment, and make excellent spies and criminals. The blogger said there is a social stigma around being a Changeling in the imaginary culture of Dungeons and Dragons, so they often don’t appear in their proper form.
I understand why the blogger draws connections between the historical view of Changelings, their depiction in Dungeons and Dragons, and Autistics. After all, I also mask my true identity. I push down natural tendencies so deep that it could be argued I forget who I am. Not long ago, I was participating in a suicide intervention workshop. We were role-playing intervention scenarios. I decided that considering the significantly higher rate of suicide amongst autistic people, I should approach the role-play as an autistic person who needed suicide intervention. I chose to let out everything I pushed down in my daily life. It took me a concerted effort to drop the barriers I used to hold back these natural tendencies. I can also relate to the social stigma that forces one to mask their identity.
I remember something disturbing that happened to me at a writer’s workshop. I was talking about personal experiences and casually mentioned that I am Autistic. At this point in my life, it was natural to mention being autistic openly. What wasn’t natural was having a woman in the circle burst out crying. They legit heard me say that I am Autistic and started to cry. It was so off-putting that I almost forgot what I was about to say.
The blogger of Stims, Stammers, and Winks said that the social stigma of the Changelings in European mythology carried over to the Changelings of Dungeons and Dragons. These Dungeons and Dragons characters are “predestined toward crime, are pre-infantilized, are something other and more evil than human, are unstable and stigmatized” (Stims, Stammers, and Winks, 2013). It is safe to assume the European people behind these beliefs held the same assumptions of the autistic children they called Changelings. It is upsetting to realize that many people still believe similar things about autistic people today. The blogger of Stims, Stammers, and Winks said that autistic people are often accused of not having moral judgement and are thought to be too anti-social to have a shared group culture. They say, “We are seen as doppelgangers, as less than human” (Stims, Stammers and Winks, 2013).
The historical use of the word “Changeling” established the presence of Autistic culture long before medical science came up with the word “Autism” or endeavoured to describe what autism was. However, I think the historical connotations of “Changeling” are too ugly to be easily redeemed by connections made to Dungeons and Dragons. This is especially true considering the culture of Dungeons and Dragons also stigmatizes Changelings.
Most of the other terms I want to touch on fall under the umbrella of the language of the Neurodiversity Paradigm. I will get into that next week. Before I do, I want to discuss some terms that don’t fall under this umbrella. For example, I recently learned that some members of the conspiracy theory group known as QAnon like to call themselves “Autists.” You are probably wondering why. That’s fair. I also found myself feeling curious and alarmed when I discovered this. These QAnoners consider themselves dogged diggers of truth. They have glommed on to the idea of perSeverance and have decided this characteristic is something worth co-opting. In the past, I sometimes used “Autist.” It is a term I won’t use for myself after finding out about the QAnon connection.
I used to refer to myself as an “Aspie.” I have a couple of things against the term now. The term is an abbreviation for Asperger’s. When I learned about Hans Asperger’s activities during World War II, that was the end of my wanting to identify with his name. Some people would say that Asperger did what he needed to survive. They’d say that he did the bidding of the Nazi party out of necessity. I think that is letting him off the hook to a degree I am unwilling to. Asperger selected children to “protect” within the boundaries of his studies. These children physiologically met the standards dictated by the Nazis. The others were condemned to death.
Asperger’s Syndrome did not “exist” at the time because it had not been named and described. Hans Asperger sent out letters containing lists of characteristics to look for in their children. He encouraged parents who saw these characteristics in their children to contact him and allow them to be part of his study. I do not believe he did not know the danger those children might face. I do not think Asperger was unaware of how the Nazi party was removing patients from institutions and murdering them. He had to have known that he was asking unaware parents to send their children to their deaths possibly. Asperger believed that as long as the parents of the children who died were told their children died of natural causes and with little pain, they’d be relieved to be rid of them. Here’s the thing: If Asperger had not recruited these children, they probably would have lived out their lives in the care of their parents. They’d be like so many members of families of the past, described as quirky or eccentric, or maybe just pitied. They would have been unlikely to be shipped off to death camps by their parents. Hans Asperger was the one that convinced them to send these children away from home for treatment. He was the one who presented them with a list of characteristics they should henceforth consider abnormal, even though they may have considered them to be natural differences up to that point. Hans Asperger was the one who encouraged so many parents to unwittingly put their children in the crosshairs of the Nazi genetic cleansing machine, so he does not get a pass from me.
Now is a great moment to switch gears and introduce some of the vocabulary of the “Neurodiversity Paradigm.” The word “Neurodiversity” was coined by an Autistic Australian social scientist named Judy Singer. They described Neurodiversity in terms of there being a diverse array of neurological ways of being, not unlike social psychologist Howard Gardner’s theory of multiple intelligences. The main difference between Neurological Diversity and Gardner’s Multiple Intelligences is that Neurological diversity is pathologized.
Kassianne Asasumasu (formerly Sibley) created the words “Neurodivergence” and “Neurovirgent” as non-pathologizing and stigmatizing terms (Stims, Stammers, and Winks, 2013).
Next week, I will go into detail about the language of the Neurodiversity Paradigm. It is a vocabulary I often have misused. The most common reason I’ve misused the language is that I wanted to deflect criticism from people for saying Autistic. The words had the feel of buzzwords and felt like the kind of thing people wouldn’t correct you for using because they weren’t entirely sure what they meant. Ironically, I also didn’t understand the words most of the time when I used them as a form of deflection. I am embarrassed to think about it now.
There are three final, interrelated terms I need to discuss. The first is “Autism Spectrum.” In my opinion, the problem with the concept of the “Autism Spectrum” is that it creates divisions and prioritizes. I visualize the autism spectrum as a vertical ladder. The rungs on the top are Autistics who have high-support needs. The rungs on the bottom are Autistics that have low-support needs. I was tempted to say that I visualize it as a pyramid. This configuration suggests that there are numerically fewer Autistics with high-support needs, which is not the point I was looking to make. It is often argued that those on the top rungs of the ladder should have the majority of the resources because their care needs are more intense.
There’s an additional aspect of this ladder, as I imagine it, that I find even more problematic. I visualize a section of rungs above the rungs occupied by the two divisions I’ve already named, one that is not generally acknowledged. As I imagine them, these rungs are occupied by parents, professionals, and the industries/corporations that make money providing services and advocacy for Autistics. I’m not trying to say that all these groups of people are inherently evil.
The problem is that Autistic discourse, as in discourse about and by Autistic people, is too often derailed by Autism discourse, or discourse about Autistic people that occurs without Autistic people. The concept of the Autism Spectrum suggests that all of us are on the spectrum. As I see it, though, Actually Autistic people fall beneath the groups of non-Autistic people I’ve just listed.
Parents, professionals, industries and corporations occupy the top rungs because of their numerical superiority. They claim an equal right as Autistics to speak about Autism. After all, they are on the ladder (or the spectrum). They use their position to punch down on Autistics with low-care needs when they try to speak, telling them that they are diverting attention and resources away from those who need both more. Queerly Autistic said, “I have been told that I am a ‘high-functioning’ Autistic. 90% of the times that people try to apply this label to me, it is a last-ditch attempt to try and get me to stop talking” (Queerly Autistic, 2017).
The problem isn’t just the imbalance of power held by parents, professionals, industries and corporations. Hierarchies inherently carry the danger of feelings of supremacy. Stims, Stammers, and Winks said:
“Aspie Supremacy is a word that describes the arrogance of members of the autistic community who identify with the “high-functioning” label and stigmatize members of the autistic community who do not identify as “aspergers/aspie” or “high-functioning.” This word was coined by Amanda Baggs” (Stims, Stammers and Winks, 2013).
Okay, guys, that’s all I have for you this week. Thank you all so much for clicking on my content. I’m brand-spanking-new to this, but I think this is where I’m supposed to ask you guys to click to subscribe, turn on your notifications, so you know right away when I upload more content, leave a comment, and give a review. I would be very honoured if you were to share this content on your social media, especially within your Autistic circles. You can find me under Limbic Noodle on Twitter. I have an Instagram account, but if I’m being honest, I don’t understand Instagram. I hope I have been sharing things correctly there. I mostly try to share Indigenous advocacy and pride items on Instagram. I also have a Tumblr account, but full disclosure, it’s mostly a spot for my sister to park certain content when her executive function fails, and she has trouble sorting it. I’m not on Facebook under Limbic Noodle, and I’m not sure I will be. I have a WordPress Blog under “Autism and The Human with Limbic Noodle.”
I am working on Youtube content to accompany this podcast. I have commissioned an avatar from @ChibiMagicDiary on Twitter to use for this purpose. This Youtube content is another level of labour, so it will take longer to be available.
I want to take this moment to admit that I am encountering some executive dysfunction when it comes to the issue of commodification of this work. As I stated earlier, many people are making money off Autistic experiences. I am not ashamed to say that I would love to be one of these people, which I think is fair since I am also Autistic. However, I’m a little overwhelmed by the question of how to do this. I am considering opening a Patreon, which I understand is one standard way to monetize content. I would love to know if this is worth my time and when it would be recommended to do this.
Next week I will be discussing paradigm shifts and diving into the concept of Neurodiversity. Language around autism isn’t just about being polite. Next week’s episode will be called “Power Dynamics, Pathologisation and Paradigm Shifts.” Look for me to post on the same day and time next week.
Until next week
Keep on Noodling.
It is hard to give proper citations on a podcast so I will be putting my works cited on this platform. The works cited for Limbic, Liminal, Labels and Language (Episode One of Autism and The Human) are listed below.
Walker, N. (2021). Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities. Autonomous Press.
Sequenzia, A. (n.d.). Person first language and ableism. Ollibean. https://ollibean.com/person-first-language-and-ableism/
Forshaw, A. (2013, October 22). Disabled, not broken. My autistic dance. https://myautisticdance.blog/?s=Disabled%2C+not+broken
Sequenzia, A. (n.d.). The gymnastics of person first language. Ollibean. https://ollibean.com/the-gymnastics-of-person-first-language/#:~:text=Person%20First%20Language%20is%20about,in%20when%20talking%20about%20Autistics.
Sky, A. (n.d.). Mamautistic: I’m an autistic mama blogging about memories and life. https://mamautistic.site/
Kim, C. (2013, June 26). Decoding the high functioning label. Musings of an aspie. https://musingsofanaspie.com/2013/06/26/decoding-the-high-functioning-label/
Autism Speaks [@autimspeaks]. (2019, July 22). Twitter. https://twitter.com/autismspeaks/status/1153347990452658178
Autism Speaks. (2020, December 11). Our Mission. Autism Speaks. https://www.autismspeaks.org/about-us
Queer Disabled Writer. (2013, November 1). Autistic vocabularies of resistance and community: how autistics speak. Stims, stammers and winks. http://stimstammersandwinks.blogspot.com/search?q=autistic+lexicon
Queer Disabled Writer. (2013, September 12). Revolt of the changelings and the feral children: Reuniting with autistic ancestral spirits. Stims, stammers and winks. http://stimstammersandwinks.blogspot.com/search?q=Changelings
Leong, D. (2020, August 19). Seeing clearly. bunnyhopscotch. https://bunnyhopscotch.wordpress.com/2020/08/19/seeing-clearly/
Queer Disabled Writer. (2013, November 1). Autistic vocabularies of resistance and community: How autistics speak. http://stimstammersandwinks.blogspot.com/2013/
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