As the broader neurodiversity movement has collided with the digital landscape, the democratisation of Autism discourse has meant that more people have access to information that can aid their journeys of self-knowledge. People who were once isolated and unsure of their place in the world now have access to community in a way that can offer a deeper understanding of oneself and their needs. Amid this enthusiastic embracing of popular psychology delivered via infographic and “vertical video”, one can detect a rise in self-identification with a highly medicalised view of neurodivergence.
Pathological Demand Avoidance (PDA) and Rejection Sensitive Dysphoria (RSD) are two such labels gaining online traction among Autistic and ADHD people. PDA and RSD are framed in popular discourse as ‘subtypes’ of Autism and ADHD that categorise Autistic/ADHD people according to their outward behaviour or interpersonal patterns, specifically around difficulty coping with demands and interpersonal rejection, respectively. Instagram infographics detail “typical” qualities of PDA and RSD, while people identify as “PDA-ers” or blame RSD for their trials and tribulations in the workplace.
PDA was first proposed in 1983 by developmental psychologist Elizabeth Newsom. She suggested that it was a discrete developmental disorder, separate to Autism. To date, there has been limited study into PDA, and very little high quality research. A recent review paper identifies significant quality issues in the research that does exist. Of particular note is that much of the evidence for these symptoms is taken from parent reports of their Autistic children, and that potential alternative explanations for so-called pathological demand avoidant behaviours are not accounted for. (Surely it is relevant to learn what is being demanded of these children that leads to their avoidance. Are they, for example, being told to communicate according to the ‘rules’ of neurotypical niceties, instead of using their inherent and intentional Autistic modes of communication?) These qualities of the research suggest an incomplete and biased evidence base that may be capturing something other than a unique behavioural profile.
French psychologist Emmanuel Schwab suggests that “We must ask whether those with autism suffer from their condition, or whether what we see here is the result of us caregivers projecting onto their supposed experience.” In this sense, the PDA construct seems to reflect a medicalised Othering of Autistic people, a reactionary projection against the sort of Autistic behaviour that goes against the norms of productive and compliant behaviour expected under capitalism. As Naomi Klein describes in Doppleganger, parents who subscribe to an overly medicalised view of their Autistic children and espouse the vaccine myth
cannot seem to believe that anything less than conventionally perfect showed up in their rigorously optimized lives, who cling to the fantasy that their children will mirror everything they most value about themselves.
If we were to ask ourselves if Autistic people with“pathologically demand avoidant behaviours” were really suffering with this “condition”, we might find that they are actually suffering under an increasingly restrictive world that defines ‘functioning’ according to how well one can fit into a dominant paradigm. For evidence of this one need look no further than Robert F Kennedy, Jr’s despairing that many Autistic people “will never pay taxes, they’ll never hold a job, they’ll never play baseball.” (Neither of this essay’s authors have ever played baseball, for the record.) This paradigm is one that is defined against and towards Autistic people and thus projected into them, rather than developed in collaboration with them, in a way that might deepen understanding and support them to find ways of being in the world that are personally meaningful.
It is of course nearly impossible to completely separate Autism from its clinical context. Yet the rise in self-identification with rigid lists of behaviours and “symptoms” seems at odds with the utopian intentions of the neurodiversity movement. In a similar rhetorical move to strengths-based professionals who use “Autism spectrum conditions” instead of “Autism spectrum disorder”, some advocates have reframed PDA as “Persistent Desire for Autonomy”. The intent is admirable, yet no amount of euphemistic re-labelling can ultimately obscure these ideas’ roots in a deeply deficit-focused understanding of neurodivergence, and how they re-enact the conditions of capitalism that contribute to high degrees of Autistic disability. As Autistic social psychologist Dr Devon Price puts it, “neurotypicality’s punishing standards are not attainable to anyone.” He offers a reframe of PDA that positions Autistic people who struggle to meet these standards as canaries in the coal mine of a system that relies on human sacrifice to fuel its death drive march to unending profit and progress.
RSD has roots in Karen Horney’s 1937 scholarship about “neurotic personalities”; it has more recently been suggested to be a key component of ADHD. Contemporary research on RSD tends to define the ‘condition’ in medicalised terms, as something that can be transposed onto DSM-5 criteria for ADHD and defined as an ‘episodic’ disorder that is best treated with Cognitive Behavioural Therapy (CBT). Defining RSD requires a mental health professional to become the arbiter of what is a ‘real’ or ‘imagined’ instance of social rejection. Reading case studies published by the authors who defined the concept of RSD, one can see a depth of relational experience not captured by a medical model. The first case study in this paper is a young man experiencing significant social isolation, quoted as saying “having people know me just wasn’t worth the pain”. Diagnosing RSD (either by self or formal identification) places a full stop at the end of that quotation, and shuts down opportunities to create a deeper meaning around this experience, or to grieve the reality of being neurodivergent in a world that is unkind to difference.
Professionals uncritically endorsing this concept also run the risk of encouraging people to discount their potentially protective internal reactions to social harms. This is an especially risky treatment strategy for a population known to be at higher risk of domestic and sexual violence. This kind of hierarchical decision making –telling people what is a real or imagined rejection– enacts the same behaviour central to the paternalistic medical model, against which many Autistic/ADHD people have begun to rally. Casting a strong reaction to rejection as another mysterious disorder that can be managed within the neurotransmitter and CBT industrial complex extinguishes the relevance of abuse and social ostracisation in the architecture of a nervous system that jumps when someone looks at them the wrong way.
The embracing of these behavioural profiles as discrete Autism/ADHD subtypes presents an ethical concern: they represent an over-medicalisation of neurodivergent people that decontextualises their economic and relational worlds. To rely on yet more acronyms and an ever-increasing list of disorders to convey the economic and relational experiences of Autistic/ADHD people under capitalism is a symptom of an impoverished collective imagination. Specifically, one that cannot conceive of the possibility of, in the words of Autistic rights advocate Jim Sinclair, “a better Autistic world”, one in which Autistic people can be given the time, space and support that they need to engage with the world on their terms. Reflecting sensitively on the experience of parenting her Autistic son, and being forced to confront her expectations of being a mother, Naomi Klein notes that “…he was already on his own field, making his own rules –cool rules, ones that might lead to some very interesting places when he is older– but rules that he alone could decode.”
In contrast to the possibilities inherent to stances that offer relational curiosity, PDA and RSD function like the majority of mental disorders included in the broader understanding of neurodivergence (and especially those discussed via pastel Instagram infographic): to pathologise and conceal the contextual and material underpinnings of these patterns. Rather than validating, these acronyms perpetuate a longstanding Othering and atomising all too familiar to Autistic/ADHD people. Under these medicalising paradigms, Autistic/ADHD people are regarded as empty vessels to project into, diagnose and behaviourally manage, rather than whole humans with complex internal worlds worthy of deeper understanding.
Autistic/ADHD people and their loved ones who enthusiastically endorse these paradigms, then, are reacting to an impoverished system: in grasping at a deeper understanding of themselves, they are trying to make a cake from crumbs in a world that is unwilling to offer a deeper understanding of the Autistic/ADHD experience.
Increasingly, the words of Autistic essayist and researcher Caitlin McGregor ring true. Writing about Autistic memoir, they ask: “What would autistic storying look like if it wasn’t defining itself through and against psychiatry, but establishing itself on its own terms?” The same could be asked of self-identification with Autistic and ADHD behaviours observed as “difficult”. What is at risk when what we embrace about our neurodivergence is filtered through such a deficit-based framework?
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