The one positive of my neuropsychology horror story was the series of existential, epistemic and personal revelations that proceeded from it. I knew that after that experience, I had to move forward in rejecting the politics of shame and pathologisation and move towards a more holistic framework to understand myself and the way I gather and express knowledge. Since that incident, I’ve been thinking about how professionals’ ideas of autistic epistemology (people’s relationship with knowledge, how it is gathered, and the validity of that knowledge) and ontology (ideas about existence and what it represents) are rooted in the idea that marginalised people’s self-perceptions and -knowledge are intrinsically invalid because of who we are.
A few days after I received the letter from Beth Israel’s patient relations department standing by the neuropsychology department’s poor methodology, I came across some writing by the disability scholar and activist Alex Haagaard about how the voices of people with chronic illnesses are routinely discredited by doctors because these doctors have either consciously or unconsciously adopted an attitude towards marginalised people that renders their words unreliable. Their writing reminded me of some of my own ideas on how medical professionals discredit the self-perceptions of autistic people and treat us as though our self-knowledge is either non-existent or reliable; we are Hans Asperger’s ‘intelligent automata’, even if they may not directly refer to us as robots rendered in flesh in their reports. People who do not feel a fundamental tension between their self-knowledge and the ways others view them—the fraught relationship between the subjective ‘I’ and the objective ‘me’ that George Herbert Mead refers to in his work—will not appreciate the level to which this subjective/objective tension affects people’s lives. For people whose life is blissfully absent of this tension, there is a clear distinction between Normal and Abnormal, between truly human and monstrous. Furthermore, the tension that we feel is inherent to us, a flaw that must be corrected, rather than a reflection of the complex interplay between individual traits and social structures. It is a form of victim-blaming applied to people who find themselves on the wrong end of a power differential; if you’re not powerful enough to matter, your problems are your fault. You are the problem. (Incidentally, this is why I am generally indisposed to refer to neurodivergent experiences as being disorders instead of disabilities except in specific circumstances; being disordered implies that the problem inheres within the individual and exists separate from a broader context, whereas disability implies a more complex state of affairs in which people experience both internal disabling experiences and social disablement. It’s even worse in languages like German, in which disorder is translated as Störung, or disturbance.)
When your clinical standpoint requires that ‘disordered’ people must be discredited, then it is far too easy to reject or distort patients’ experiences. After all, our existence is a flaw in the human design. Anything we produce must be flawed by extension. This is magnified if autistic people also experience intersecting forms of marginalisation, like misogyny, racism, homophobia, transphobia or classism. The discrediting experiences that women, people of colour, low- and moderate-income people, and LGBTQ people encounter reinforce and magnify the disablism we face. People like me cannot be reliable narrators under this framework. The idea, for example, of a black, queer, disabled person being intelligent enough to question the underestimation of their intelligence and to question the idea that the methodology used to evaluate me would accurately describe my cognition, is unfathomable. Recognising that a black, autistic man was capable of being empathic would destroy the very foundations upon which his faulty framework of autism was based. After all, aren’t black men all brutes and autistic people unfeeling robots? Had I come into that office with the same level of education – at the time I was a semester away from finishing my master’s degree and had mentioned being interested in doing a doctoral dissertation – and work experience as a white, non-disabled man with unconditional male privilege, I doubt I would have received the same treatment.
This neuropsychologist had a clear ontological framework of Being Autistic: restricted interests, poor social skills, unable to have legitimate insights into one’s own intellect, knowledge-gathering processes, or background. This pattern of traits was his foundational definition of being autistic within the world. I suspect that he had an absolute, reified version of autism in which it exists as a solid entity with clear boundaries, rather than a socially constructed phenomenon or set of phenomena that is defined primarily for its utility, not its concrete existence.
While I refer specifically to a professional who was immured in a particular kind of thinking and applied it to me, this is certainly not limited to him. It’s the entire foundation of how autism is viewed within traditional medicalised practice. Please note that I’m not a strict adherent of either the social or medical model; rather, I view disability as a combination of social and medical factors. I admit that I am more hostile towards the strictly medical model than I am the strictly social model; I find the former profoundly dehumanising and Othering in ways I do not see the latter. I am generally opposed to models that view people as entities entirely deracinated from the social and cultural contexts in which they live, work and learn.
This systemic devaluation of autistic self-knowledge and existence has real, palpable effects: self-hatred, depression, anxiety, free-floating existential angst. They lead to a construction of an oppositional self-concept that internalises those messages. Whenever I think about my experience with this doctor and and other ‘experts’ like him, I fall into spirals of self-doubt, wondering if my perceptions can be trusted or if my memories are real. I start tearing myself apart, constantly trying to psychoanalyse myself in an effort to find out why I view myself the way I do. I feel a nasty chill running up my spine and a metallic tang in my mouth. I can feel my thoughts starting to scramble and introjected voices taunting me and trying to discourage me from scholarship and intellectual inquiry. I’ve had lifelong mental health struggles because of this kind of devaluation. I know I’m mostly talking about it from a theoretical standpoint here, but it goes beyond that. Remember that even the most abstruse academic theories about identity and selfhood attempt to address internal experiences and social structures that can and do affect real people.
If this happened to me, somebody who does have educational privilege and can engage critically with academic literature, imagine what might happen to someone else who doesn’t have those external markers of credibility.