Context Lecture on NeuroDiversity

Description

Terms: NeuroDiversity and Spectrum

We would like to briefly note that we deliberately say autistic or autist and not “person with autism” or “child with an autism diagnosis.” To speak of autistics corresponds to the so-called identity-first language and the self-perception that autism cannot be separated from the person (Bottema-Beutel et al. 2021). How the person is, their identity, is inevitably linked to the challenges of autism. “Person with autism,” on the other hand, is usually preferred by parents or other advocates as it means to emphasise that their child is a person despite autism. There is no question about that, yet here we endorse the expression of the affected persons themselves.

The concept of neurodiversity goes back to the sociologist and activist Judy Singer (1999) and also emphasises the humanity and naturalness of autists and other people who are neurologically “different” (e.g. ADHD or dyslexia). The term is opposed to pathologising these people and emphasises that neurological differences are to be thought of in a similar way as gender or sexual orientation and are thus an expression of natural diversity. Neurodiversity is, above all, an approach to protect neuro-minorities from the majority (“the neuro-typicals”). Experimental studies have shown, for example, that neurotypical subjects had just as much difficulty comprehending the behaviour of neurodivergents as vice versa (Komeda et al. 2015). This raises questions about communication and culture: impairments can, for example, occur in one (written) language (cf. dyslexia) but not in another.

Neurodiversity emphasises diversity, so our larp cannot speak for all autistics. However, we have incorporated experiences that have been repeatedly reported to us, and autists have been involved in the design process.

The term “autism spectrum” also aims to emphasise diversity but is often misunderstood. Especially statements like, “we are all a bit on the spectrum,” make this clear. C.L. Lynch (2019) compares autism to the visual spectrum to better clarify the term. 

The assumption that one can be “a little autistic” or “extremely autistic” is comparable to how a colour can be weak or intense, for example, light blue or dark blue (see figure; all representations are adaptations from Lynch 2019). Such a visualisation is not a spectrum, however, but a simple colour gradient.

Autism is neither that simple nor a set of defined symptoms that collectively worsen as one moves “up” the spectrum. The assumption that autism cannot be that bad in a person who looks you in the eye also reflects the expectation and demand that you, as disabled, should be the way non-disabled people expect you to be (cf. also ableism).

According to the Diagnostic and Statistical Manual (DSM), autism is referred to as an “unequal ability profile,” a collection of related and intertwined neurological conditions that express themselves slightly differently in each person.

If we use a different spectrum, namely the visible spectrum, the misunderstanding becomes even clearer. The different parts of the spectrum are noticeably different from each other. Blue looks quite different from red, but both are in the visible light spectrum. The point is that red is not “more spectrum” than blue.

This is what autism as a spectrum would look like. All autistics are challenged in one way or another in most or all of these areas. If only one or two areas apply, then it is not called autism. For example, if you only struggle with communication, you would be diagnosed as having a social communication disorder. If one only has problems with movement and control of the body, it is called dyspraxia or a developmental coordination disorder. If one suffers severely from bright light, this is a form of sensory processing disorder.

But when all the above and more apply, it is called autism.

Each autist shows different manifestations. One person may be less affected in terms of pragmatic language and body control, while another has almost no problems with the former, but cannot move freely (non- or barely-impaired is greyed out in the figure).

This makes it clear how untenable it is for someone to say, “we’re all a bit autistic”, because they also feel uncomfortable in social situations. It’s like saying you are dressed “a bit rainbowy” when you only wear red (Lynch 2019). If someone can look you in the eye, it does not mean that person is less autistic than another who needs a wheelchair.

Autism and the majority society

A common thread running through our interviews and other studies revolves around autistics’ ability to adapt to the expectations of the majority society. Depending on an individual’s autism, this challenge takes different forms. It is perfidious that autists who are able to hide their autism have been described as “high-functioning” (i.e. rather in the sense of “well-functioning”, formerly known as Asperger’s syndrome). For example, one phenomenon associated with autism is stimming, or self-stimulation. This can be jumping up and down or staring at the movement of one’s own fingers. These are measures of self-regulation, something that autistics do to calm themselves down or to endure a stressful situation. “High-functioning” autists have learned to do stimming inconspicuously (for example, by following the trend of Fidget Spinners). Therapy for autism also meant in the beginning, and in many countries today still, trying to train away such behaviour. This has caused a lot of suffering, as it often deprives the affected person (child) of the only way to calm themselves (Prizant & Fields-Meyer 2015). Difficulties of autistics to express themselves, the unwillingness or inability of neurotypicals to understand their behaviour (cf. Komeda 2015), and feeling attacked when autists do not meet one’s own expectations lead to a tense relationship between the majority society and neuro-minorities. Many well-intentioned therapies, in particular, sometimes make the situation worse.

An example of problematic expectations are “non-linear” skills, i.e. when someone has a skill or has mastered something that is considered advanced but cannot do the things that are expected to be basic. For example, one of our informants plays the zither, an instrument that requires great fine motor skills. However, she has enormous difficulty eating and can, at most, bring a spoon to her mouth. Even then, she needs a bib to keep from spilling on herself. Such a discrepancy triggers in neurotypicals the feeling of being taken for a fool, so that, for example, pupils among our interviewees became the target of bullying by teachers.

The problem of expectations with simultaneous overload, as we have tried to make tangible in the larp, was taken up by anthropologist Dawn Prince-Hughes, who researches primates and, in her book Songs of the Gorilla Nation: My Journey Through Autism, describes how her work with gorillas has helped her deal with her autism. In Autism in Translation by Elizabeth Fein and Clarice Rios, she describes life as an autistic in relation to majority society and makes another point:

If you can imagine standing in a hula hoop that you can’t get out of, no
matter what, and there’s a godawful high school marching band going
around you constantly, someone’s making you eat and smell limburger
cheese, and you’re being pricked by needles by people that are coming in
at random intervals, just pricking you at different places in your body—now
imagine living like that for seven years without a break, or 35 years, or 52
years, now, which I’m coming up on—and then you’re supposed to—let’s
see, what are the rules—you’re supposed to be spontaneous! and show joy in interacting with people! And it’s just the craziest thing! When you know
[autism] from the inside out, you think, well, nobody’s gonna do that. And to me, that is the case. Nobody’s doing that. When I think of the spectrum—
and I think of myself as far over on the spectrum but I see everybody on that
spectrum—and when you mentioned the toxic waste dump idea, I think that
in the case of autism, it’s almost as if evolution is anticipatory. So the kind of
toxic environment, culturally and physically, that we’re being born into actually needs people like us to be the canaries in the coal mine, that say::
This is too much.
We can’t deal with it.
It’s painful.
[…] I can feel the dying of the planet. I can never get away from it. And I think other people are feeling it too. But they find their own different ways to seize on culture to limit the kind of stimuli that they’re feeling. […] We saw it yesterday when we were trying to have our discussion. Our impulses to cling to the familiar. To repeat patterns that aren’t necessarily going to do us any good in the long run. We hold on to methodology, or onto our field of study. We hold on to our professorship. And to me this is all just the same thing. It’s just a matter of degree rather than kind.
(Prince-Hughes in Fein & Rios 2018, p. 150; emphasis in the original)

Autists are to society what canaries were to mines: When they run out of air, it is time to run. This allegory is often limited to chemical influences and misunderstood as if it was the consumption of toxic substances that triggered autism. Like Prince-Hughes, we see this allegory more sociologically and politically. A high rate of autism diagnoses reflects a society where much is in trouble. It is the extremely noisy, glaringly neon-bright societies of the US, Hong Kong and Japan where there are the most diagnoses. This perspective bridges the gap to the social model of disability, where the surrounding society determines whether someone is disabled or not. Regardless of whether my legs carry me, a society with only stairs is more disabling than one with ramps. Another of our interviewees lived in Tokyo and described how her energy for the day had already been depleted by the 45-minute train ride in garishly lit and noisy carriages, leaving her unable to do anything at school. Only sunglasses and noise-cancelling headphones helped. After graduation, she went to the countryside with a friend: In quieter, less glaring trains and therefore did not need her aids.

In other words, Japan and other societies cause autists comparatively more stress than other societies, so they stand out, and the number of diagnoses is higher here.

In terms of diagnoses, it is also striking that more males continue to be diagnosed than females worldwide. On the one hand, this is due to expectations of how a “real boy” should behave, which means that male children who do not meet these expectations are more likely to stand out. On the other hand, it is because many autistic women — possibly also due to a different upbringing of girls — are better at hiding their neurodivergence. That is, they work out strategies, learn appropriate responses to small talk etc., that allow them to pass as “normal.” These strategies are called “masking,” which we wanted to express in the game with the help of the Oreans’ masks. Masking also costs energy, of course.

The experience of limited or depleted energy, which many autists describe, was incorporated into the larp in the form of necklaces. We refer here to the so-called spoon theory by Christine Miserandino (2013). This metaphor of spoons as a unit of limited energy is increasingly used by people suffering from chronic illnesses, especially when they are not visible. The theory describes that they would have, for example, only 10 spoons a day at their disposal, of which two would be used for getting up and getting ready, two for getting to and from work and another four for the work itself (as an example). But now you have to go shopping after work (1 spoon), a friend wants to meet you (2 spoons), and your parents want to make another phone call (1 spoon). It quickly becomes clear that doing everything would exceed the available number of spoons. So the people concerned have to decide what they can prioritise. Despite all the planning for the day, they also need a reserve for the unexpected. If one relates the spoon theory to stimming (above), it also becomes clear how difficult it is for autistics to replenish their spoon supply, just so that neurotypicals do not feel disturbed by their behaviour.

Our larp seeks to make these difficulties tangible in order to promote a better understanding of autism. In doing so, it was important to us not to design one of the two groups as autistic but to give both of them certain challenges related to the environment and culture, which pick up on those that autists have to struggle with. Following the canary motif, an environment where autistics are less challenged — like the quiet, less bright trains — is also an environment that can be better for neurotypicals. In this regard, we would like to conclude these remarks with a positive example. The classmates of an autistic student at a high school in Indiana made allowances for his sensitivity to loud noises the entire time he was in school so that he was able to study until graduation without having to endure noise and related stress. Unprompted, they also gave him a “silent ovation” at the graduation ceremony: Instead of clapping, they just stood silently. That little bit of consideration made life easier for everyone and made one person very happy.

This is also the goal of the NeuroDiversity movement, which started in the 1990s: To make the coexistence between neurotypicals and neuro-minorities more comfortable for everyone. We hope that our larp will make you think — maybe also about other minorities and their relationship to the majority society — and we would be happy to talk to you a bit more about your experiences in the larp, especially in relation to this lecture on the background of its design.

[If you allow, we would also like to record this discussion for our evaluation].

Sources

Bottema-Beutel, Kristen, Steven Kapp, Jessica Nina Lester, Noah Sasson, Brittany Hand. 2021. “Avoiding Ableist Language: Suggestions for Autism Researchers.” Autism in Adulthood 3 (1): 18–29.

Fein, Elizabeth, and Clarice Rios. 2018. Autism in Translation: An Intercultural Conversation on Autism Spectrum Conditions. New York: Palgrave Macmillan.

Komeda, Hidetsugu, Hirotaka Kosaka, Daisuke N. Saito, Yoko Mano, Minyoung Jung, Takeshi Fujii, Hisakazu T. Yanaka, et al. 2015. ‘Autistic Empathy toward Autistic Others’. Social Cognitive and Affective Neuroscience 10 (2): 145–52.

Miserandino, Christine. 2013. “The Spoon Theory.” But You Dont Look Sick? (blog). April 25, 2013. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.

Prizant, Barry M., und Thomas Fields-Meyer. 2015. Uniquely Human: A Different Way of Seeing Autism. London: Souvenir Press.

Singer, Judy. 1999. “‘Why can’t you be normal for once in your life?’ From a ‘problem with no name’ to the emergence of a new category of difference”. In Corker, Marian and Sally French (eds.). Disability Discourse. New York: McGraw-Hill Education, pp. 59–67.

Give everyone who wants to say something or has questions space to talk and discuss further about the larp.