Moving Beyond Autism as a Pathology
May 20, 2024
First appeared in PSY620 Learning and Cognition, UAGC, May 20, 2024.
Before I get started, I would like to define a couple of terms for the sake of clarity. To avoid ableist language by assuming a “typical” or “normal” state, I will refer to two distinct groups of people by the titles autistic and allistic (“Allistic,” 2024). “Autistic” describes a person with autism, whose specific features will be described in this presentation, and “allistic” simply means someone who is not autistic. We as a community recognize also that there is a spectrum of traits and that there can sometimes appear to be some overlap between the allistic and autistic populations (Chown, 2019; De Groot & Van Strien, 2017), but part of this project is meant to illustrate that the material consequences of a fully autistic presentation include experiencing discrimination and disadvantages, and I hope to offer some insight towards understanding and resolving these issues.
Introduction
When Noam Chomsky released his inaugural text, Syntactic Structures, in 1957, he described a genetically inherited capability to develop language acquisition first as a process of cognitive development that molds and gives form to the worldview and internal psychological paradigm an individual operates from for all of their life. With this cognitive structure in place, the secondary function of communication emerges, facilitated by active learning and coaching by a child’s immediate social group (parents, siblings, and other caregivers) in the manner described by B. F. Skinner in his book that came out the same year, Verbal Behavior (1957). While this process of primary language acquisition is consistently observed for the vast majority of the population, autistic people often experience its stages in a different order, at a different pace, with differing cognitive priorities, and with a wide range of results (Kissine, 2021; Whyte & Nelson, 2015). The very existence of this deviation supports the Chomskian innate language acquisition model, but it also points up the ways in which cognitivism could and should further support the exploration of autism as its own neurotype if not phenotype.
Ever since Leo Kanner and Hans Asperger each identified autism in the 1940s, it has been defined mainly as a pathological condition marked by specific social and behavioral deficits. The current, fifth version of the DSM includes autism under the heading of “Neurodevelopmental Disorders” (American Psychiatric Association, 2013) and describes autism spectrum disorder as including deficits in social-emotional reciprocity, social communication, adaptability, sensory reactivity, and empathy, among others. These ideas about autism have been perpetuated by literature such as Simon Baron-Cohen’s essay “Mindblindness” in 1995 that claimed autistic people are incapable of relating to the thoughts and feelings of others and Ivar Lovaas’ extensive work on the “inhuman” and “subhuman” nature of autistic (and non-normative) children (Lovaas, 1987; Lovaas et al., 1973; Rekers & Lovaas, 1974).
At the same time, autistic adults, including both those who were diagnosed by clinicians and those who self-diagnosed starting with Baron-Cohen’s Autism Quotient test, have attempted to indicate that these statements and generalizations about the autistic experience are not just inaccurate but very damaging (McDonald, 2020). Of deepest concern is that until very recently, the clinical descriptions of autism were based exclusively on external observation and were drafted without the input or feedback of actually autistic people.
Behaviorism – and especially radical behaviorism as defined by Skinner, Lovaas, and John B. Watson – was applied to the problem of autism from the very beginning as the primary method of “treatment”, even while the cognitive revolution upended the foundation of behaviorism as an incomplete school of thought. As autistics learn to understand themselves better, we are becoming more aware that what is currently aggressively viewed as pathologies and disorders are far more likely reactions to a hostile environment that is in conflict with our neurological, cognitive, and sensory needs (Hipólito et al., 2020; van Es & Bervoets, 2022).
Language and Relational Engagement
One of the key milestones for autism begins in the earliest stages of language acquisition and cognitive structuring, manifesting as a divergence of how language is coded as part of the social script. Unfortunately, the pervasive linguistic culture has been defined by allistic standards, which means that layers of implicit meaning and subtext are normalized in social engagement, especially with language games. A language game describes the verbiage and usage associated with a particular activity that essentially gives that activity its meaning (Chown, 2020).
For instance, job interviews frequently include questions that invite interviewees to discuss their weaknesses, and the unspoken social expectation that is that the interviewee will demonstrate self-awareness through their response, either with humility or hubris. However, the autistic individual will generally fail to perceive that subtext and will experience instead a state of confusion and conflict at being invited to essentially volunteer a reason to not get hired.
This specific example illustrates a fundamental problem with the onus being put on the autistic person to learn how to code-switch. Code switching is the capacity for a person to change their immediate linguistic style to match the purpose and audience they are addressing, often used in the context of polyglotism but also strongly demonstrated in demands by differing social strata (Johnson et al., 2022; MacSwan, 2016; Myers-Scotton, 2017).
In this scenario, there is an emotional and mental demand for the autistic person to act against their nature, to respond to what feels at their core like dishonesty and self-sabotage. This creates a state of confusion and anxiety for the autistic that compounds whatever other “weaknesses” the interviewer might see beyond the failure to answer the spirit of the original question, greatly reducing the likelihood that an offer for employment might be extended.
If, on the other hand, the interviewer instead used a more direct question that explored the same ideas without relying on the interviewee to interpret unspoken intention, the autistic interviewee could answer honestly and authentically. The main difference is that changing to a direct question does not cost the interviewer any kind of emotional labor whereas asking an indirect one exacts a significant emotional toll on the autistic interviewee.
Statistically, the negative real-world consequences of this scenario are all too common. That autistics must accommodate an allistic culture creates significant disadvantage: the unemployment rate for autistic adults is far higher than almost every other demographic, including released convicts and people with significant learning disabilities (Espelöer et al., 2023; Lallukka et al., 2020; Solomon, 2020). Despite being cognitively capable of nearly any role or position, the allistic social structure enforces a standard of conduct and sensory environment that ends up being actively and materially hostile to autistic people.
Sensory Differences
A consistent feature of autism is a vastly different range of subjective sensory experience compared to allistic people. By range, I mean that the entire expanse of experience is both more and less intense than allistics (Balasco et al., 2020; Belek, 2019; Boldsen, 2022; van Es & Bervoets, 2022). For instance, auditory processing can mean being able to hear the hum of electricity in the walls or a car door open on the next block over but having difficulty coding the words that someone is speaking directly to you. We receive much more auditory information at once and prioritize that input by a different scale; cognitive processing interruptions frequently occur when an environment is filled with too many disparate and discordant noises. A similar phenomenon happens with visual stimulation, which is why fluorescent lights present a constant challenge to autistics: both the electric hum and the flickering that is part of their normal functioning can create a profound attentional sink.
Sensory differences often include tactile sensitivities as well. These can be food texture intolerance like an aversion to slimy or crunchy or sandy foods, and it can make certain fabrics feel like needles and razors on the skin. The care tag on clothing can create a constant low-key irritation, and clothes that are either too tight or too loose can distract the autistic just below the conscious threshold, building to a state of agitation and anxiety. For many autistics, especially children who do not have a well-developed sense of interoception to discern consciously where an irritation is coming from, this agitation builds in the background of the daily experience until it becomes overwhelming, resulting in massive emotional dysregulation and meltdowns or shutdowns.
I would like to take a brief moment here to define the differences between a meltdown, a shutdown, and a temper tantrum. Meltdowns and shutdowns are both overstimulation responses. A meltdown occurs when stress is deferred for a period of time without being able to be dispersed and the feeling builds up, exploding violently. This is what is going on when kids who have been in behavioral analysis or school for eight hours a day come home and behave as absolutely raving madmen: they have returned to a “safe” environment where they can release their emotions without a fear of rejection. A shutdown occurs when a similar type and level of stress occurs, but instead of the emotions exploding outward, the autistic turns to their inner world, shutting off verbal, emotional, and even sensory responses until the dysregulation passes or is otherwise resolved. The important knowledge to take away from this is that neither meltdowns nor shutdowns are voluntary.
By contrast, a temper tantrum is an act of deliberate emotional manipulation on the part of an offended party – a child that didn’t get a toy at the store or an adult suffering from rejection. When the offense is resolved (the child gets the toy or the rejection is reversed or accepted), the aggression aspect of the reaction stops. Emotional equilibrium returns to its baseline without further upset.
For meltdowns and shutdowns, there is no offense that can be addressed. There may have been a triggering event, but even satisfying that offense will not correct the dysregulation. The correct response depends on the specific sensory profile of the autistic in question; it may involve applying deep body pressure as in a gentle bear hug; reducing the sensory environment to a dark, quiet place; safely satisfying a sensory-seeking response with a strong flavor (lemons, vanilla, a favorite food), a comforting smell (chamomile, lavender, eucalyptus), or a favorite sound (ASMR-type sounds, ambient music, or sometimes heavy, loud music); and assuring the person that they are safe and protected while they work their way back to a regulated state.
Meltdowns and shutdowns can occur due to a buildup of any type of stress – even what we would term positive stress from happy experiences. Sensory overwhelm occurs in conjunction with strong emotional reactions that trigger overstimulation – and emotions are also experienced at a wider and more intense range of impact compared to allistic people. Autistics feel their emotions in a real and physical way, and sometimes in ways that are not consistent with what the social paradigm suggests is correct such as laughing during tragedies or having no emotional response during celebrations. This mismatch creates additional stress for the autistic person because not only are they in conflict with the social paradigm but in ways they have no conscious control over.
The Double-Empathy Problem
As mentioned in the earlier example, the onus of adaptation is often put to the autistic person instead of on the allistic paradigm, but not all autistic people are capable or willing to make those adaptations. When autistics are forced to adapt without reasonable accommodations, this is called masking or camouflaging (Evans et al., 2023; Miller et al., 2021), and it comes at enormous personal cost. Again, the act of behaving and presenting inauthentically creates an internal struggle that increases the likelihood of intense emotional dysregulation. When autistics are forced to mask too much and/or for too long, they experience intense mental and medical crises called autistic burnout (Arnold et al., 2023; Higgins et al., 2021; Mantzalas et al., 2022), severe periods of executive dysfunction, chronic pain and illness, and deep depression often with suicidal ideation that can take weeks, months, or even years to recover from.
When it comes to the onus of adaptation, we are presented with the double-empathy problem: allistic people find themselves uncomfortable with the direct and often unfiltered cognitive expressions of autistic people, and autistic people find themselves uncomfortable with the expected obfuscation and indirect communication expectations with allistics (Milton et al., 2018; Mitchell et al., 2021). In practice, this mismatch should be no more of a problem than any circumstance when the two sides are speaking different languages, and logically the more direct and productive language would take priority. But, because the allistic paradigm is the dominant structure, the demand is for autistics to accommodate – even though there is the aforementioned personal cost for autistic people to act inauthentically, and the autistic paradigm directly and materially benefits allistics as a whole (Davidson, 2010).
Consider the accommodations that are commonly made for autistic employees and students: flexible deadlines, remote or private work environments, clearly stated expectations, regular feedback, and written record of meetings. These are elements that should ideally be part of any position, and yet they have to be defined specifically for autistic people as special dispensations. Allistic people thrive in inclusive environments because they, too, benefit from reduced stress and improved accountability to their peers and superiors.
Autism as an Embodied Experience
Imagine for a moment how autism would occur in our society if it was not viewed as a disorder or disability. Imagine that autism is merely a different “form of life” (Tonner, 2017), a concept posited by Ludwig Wittgenstein as a culture defined by how and why specific language is used. The language games previously mentioned are a part of the shared cultural experience, but each individual experiences and interprets even these shared games according to their own internal context. Expand this idea of form of life beyond purely linguistic constraints and recognize that all phenomena of culture are based in entire ecosystems of meaning and function described by how our language is acquired and developed.
Under these considerations, what is necessary for an autistic lifestyle to be comfortable and productive in the same way that allistic people live? First, control the sensory environment and remove unwanted aggressive hostile stimuli. Respecting the range of attentional variability is critical to maintaining a well-regulated emotional and cognitive state. Next, a clean language mode is called for where code switching is kept to a minimum and the language games are designed for maximum transparency, clarity, and honesty. This includes speaking without obfuscation and committing to interpreting messages without malice unless explicitly stated as such. Also, flexible time management is necessary because another major commonality among autistics is a circadian rhythm shift in addition to a variance in spans and intensities of attentional investment. This means that “bank hours” types of schedules are often counterproductive to their most functional times. Autistics should have the time they need to focus on their preferred task for however long it takes to achieve full completion.
As an aside to this point, many autistic scholars believe that monotropism, our ability to single-mindedly focus on a task or problem to the exclusion of all else, is a core defining autistic feature that is the result of our variable range of attentional resources (Dwyer et al., 2024; Grissom et al., 2024; Woods, 2019). It is differentiated from having a dominant neurotype of attention-deficit hyperactivity disorder (ADHD) in the capacity for distraction: autistics have less capacity for becoming distracted but more anxiety and distress at getting distracted from their focused task, whereas people with ADHD have a higher tendency to be distracted from a task with lower (but not absent) tendency towards anxiety. For people who fall equally under both diagnoses, what we call AuDHD, distractions must be minimized more than in the singular neurotype groups because they are more likely to both experience extreme anxiety and lose their grasp on the associative cognitive tasks.
In a truly inclusive world, the ecological needs of autistics would be satisfied and autism would exist alongside allism as complementary forms of life, the two parts of the spectrum leaving plenty of room for the brilliant range of diversity that humans are capable of – and benefiting greatly from all of it.
And Yet, Autism Can Still Be Disabling
So, as we have seen here, the disabilities of autism – as in, the inability to function according to a specific standard of performance – occur most frequently as the result of conflict with environment, and when that conflict with the environment is addressed, the emotional and cognitive disabilities are mitigated. But, there are still a great number of secondary and co-occurring conditions that exacerbate autistic features into disabling states, including both mental and physical infirmities. Depression, anxiety, and ADHD are the three most common mental health concerns for autistics, sometimes even considered to be part of the diagnostic profile because of the prevalence of co-occurrence. Secondary mental and behavioral tendencies like pathological demand avoidance (PDA) and rejection sensitive dysphoria (RSD) are also extremely typical (Lugo-Marín et al., 2019; Radwan & Mallik, 2021).
Medically, Ehlers-Danlos Syndrome is a dysfunction of the connective tissue around joints and sometimes affecting the epithelial membranes of blood vessels and organs, and it occurs among autistics and ADHDers at rates magnitudes higher than the allistic population (E. L. Casanova et al., 2020; Kindgren et al., 2021). Epilepsy is also a frequent co-occurrence, as are migraines, headache syndromes, sleeping disorders, and gastrointestinal problems (Al-Beltagi, 2021; M. F. Casanova et al., 2020).
The question cannot yet be answered as to how many and to what extent these and other comorbidities and co-occurrences might also be induced by hostile environmental factors. Autistics traditionally have more difficulty with allergies and food sensitivities, so would the instance of any of these conditions endemic to the autistic population drop if provided with diets tailored to their digestive needs? Anecdotally, there is support for this as many autistics opt for gluten-, wheat-, and dairy-free diets, often with noticeable reduction in mental and medical symptomatic features, but clinical research has not yet been completed to confirm the positive trend. What other elements in our daily living might be creating discomfort and dysfunction unnecessarily?
In Conclusion: The Complexity of Depathologization
Until these questions are answered, the road to depathologization is a complex one. In our current paradigm, autistic people need support and accommodations in order to achieve their greatest potential – or even just passable income. Historically, autistics have been responsible for some of the most incredible feats and advances in human history (Armstrong, 2010; Silberman & Sacks, 2016), but this modern label of being disordered and disabled forces us into the stereotype that any disabled person is permanently disabled and generally useless in society unless provided with extreme provisions, at which point they should be grateful for being allowed even limited menial and low-wage tasks.
What we as the autistic community seek is to be recognized as a specific culture determined by our neurotype and phenotype, one that requires conscious inclusion by the dominant allistic culture. The danger that we recognize is that wrongful depathologizing and attempting to incorrectly normalize autism could result in similar missteps and tragedies as occurred when the desegregation of schools and enforced affirmative action programs were implemented without proper and ethical oversight, allowing bad actors to cause mayhem and injury to the parties being integrated (Leeson, 1966). Let me be clear that I aggressively support all forms of social equality and equity, but historically, those who are opposed to such equality will undermine the presentation and execution of actions in the social sphere if they are allowed. This happens through the trivialization of real concerns coupled with the simultaneous stigmatization of being unable to perform in forced suboptimal circumstances (Spencer & Carel, 2021). The autistic community is then faced with a lose-lose situation of being denied their basic humanity while also having their potential contributions rejected.
At this stage in our society, we are watching systems unravel while the planet faces a looming global crisis. We as a species are desperately in need of innovation and solutions to salvage what we can from the situations that are unfolding around us. It is dangerously short-sighted to relegate the most creative and progressive members of our society to a silent minority, fettered by militant ableism and discrimination.
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