What Other Diagnoses Could Learn From Autism’s Diagnostic Appeal
The role of cognitive-perceptual mechanistic explanations
Riva Stoudt, MA, LPC, is a psychotherapist, educator, writer, and lifelong resident of Portland, Oregon. She maintains an active client practice with a focus on targeted methods of trauma processing. On her podcast, “A Therapist Can’t Say That,” she explores taboo topics within the therapy field with an eye towards nuance, complexity, and productive discomfort. Learn more at The Kiln.
This is a response by Riva Stoudt to the post, “Autism’s Confusing Cousins: A differential diagnosis for the weird and the awkward.”
While as a fellow clinician I’m sympathetic to the increasingly prevalent dilemma of handling clients’ attachment to diagnoses we’re skeptical they truly meet criteria for, I think this misses the mark when it comes to identifying the reasons behind autism’s memetic power and current popularity as an interpretive construct, and that there is something much more meaningful and important happening with autism than the framing “colloquial term for weird person” vs. “traditional clinical differential diagnosis as represented by contrasting DSM checklists” can capture.
In the first place, in my clinical experience, most adults seeking to explore an autism diagnosis have already accrued a number of DSM diagnoses—and nearly universally a diagnosis of your first-line differential, an anxiety disorder—and found those diagnoses not only to have inadequate explanatory power but also to lack satisfactory applied utility when it comes to addressing the suffering that they were seeking a diagnosis to address in the first place. In sharp contrast, I rarely hear this complaint about the autism diagnosis. Autism is more often experienced as the diagnosis that “explains everything,” “fills in the blanks,” is a “skeleton key,” etc. Why is this? While many adults diagnosed with autism do articulate that it provides a lens for understanding why they have always felt weird, different from others, and so forth, I think to reduce autism’s virality as a construct to this one domain is reductive, and runs the risk of coming across as patronizing to the large number of people who find that the construct of autism is profoundly phenomenologically organizing to them in a way that other psychiatric diagnoses rarely are. Since, as diagnosticians, we have disproportionate influence over how people organize their subjective experiences through the lens of diagnosis, we have the responsibility to investigate the phenomenological power of diagnosis in informal settings without flattening it into its most simplistic folk psychological forms, and to reconcile what we find there (or at least attempt to) with our clinical/medical diagnostic lens without reifying deeply flawed DSM checklist constructs. Without a richer representation of the reasons behind autism’s current cultural power to balance out the still-dominant DSM model, the framing in this piece skates pretty close to that reification.
So to pose the question again: why is autism so memetically potent, and why does it have such unusual explanatory power to those who adopt the diagnosis? I believe it’s because the construct of autism gestures at a mechanistic substrate to phenomenological experience in a way that almost no other diagnosis does, and TikTok soundbites notwithstanding, the theoretical frameworks that comprise our emerging collective understanding of that mechanistic substrate are widely available and heavily disseminated throughout the community that identifies with the diagnosis of autism. (The mechanistic substrate, of course, is not referenced in the DSM criteria themselves, which is one of many reasons why focusing too tightly on DSM criteria provides limited insight both into the broader construct of the diagnosis and how it operates in the broader social context.) With few exceptions, other DSM diagnoses included as part of the differential you described are constructed as psychological. Setting aside the question of their empirical validity, personality disorders in particular are dripping with psychodynamic residue that, while I believe it has utility especially in the long-term therapeutic treatment context, provides an unsatisfyingly incomplete phenomenological picture because it lacks the cognitive-perceptual mechanistic layer that the construct of autism provides. Why do so many people with personality disorder diagnoses who go on to be diagnosed with autism report that the personality disorder diagnosis was of limited utility and the autism diagnosis was helpful? It would be easy to write this off as simple preference due to reduced stigma of autism compared to personality disorders, or to reify the constructs by saying the person “really” had autism and not a personality disorder. But this ignores the phenomenology that autism explains via its associated cognitive-perceptual mechanistic explanations, which personality disorders largely, and problematically, lack.
To credibly advocate for a return to increased diagnostic granularity in the population of people now being diagnosed with autism, or who adopt a self-diagnosis because they find the construct of autism appealing, the diagnostic constructs proposed as alternatives are going to have to do a lot more mechanistic and phenomenological heavy lifting than they currently are.
In contrast to the implications of psychodynamic etiology that associate with personality disorders, and the relatively superficial etiological models that associate with anxiety disorders, many of the proposed theoretical models for the cognitive substrate of the autistic behavioral phenotype—atypical (perceptual and allostatic) predictive processing, context insensitivity, monotropism, “intense world”—provide clear, specific, logical, comprehensive mechanistic descriptions of subjective experiences and external behaviors associated with autism. Often people who strongly identify with an autism diagnosis find these models to relate concretely and directly to their perceptual, cognitive, sensory, relational, and emotional experiences—even if they are not fully versed in the totality of the theoretical frameworks themselves—and thus the autism construct accumulates immense and compelling explanatory power.
By way of illustration, imagine a person whose presenting concerns in seeking a diagnosis are social difficulties, and particularly anxiety related to social situations, as anxiety is often the most obviously aversive and thus the most emotionally salient experience a person with various social difficulties might seek an explanation and relief for. Say this person receives a diagnosis of social anxiety disorder—a disorder for which, for the purposes of this thought experiment, they actually do meet criteria for, or in common parlance, “have.” The diagnosis of social anxiety disorder doesn’t contain any new information—it’s a DSM label for a symptom they already had enough self-awareness to come in complaining of. If this person then wants to use the diagnosis as a lens to understand more about themselves and about the phenomenological domain it describes, and sought out more information about the conceptual framework of social anxiety disorder, they’d be likely to find references to concepts like intolerance of uncertainty, maladaptive fear learning, and perhaps something like evolutionarily advantageous anxiety run amok. While these might be interesting, supported by evidence, and perhaps even factually accurate, they are mechanistically thin explanations. They serve a purpose as proposed causes, but they lack a complex mechanism, meaning they do not describe a sequence relating to a causal chain between the proposed cause and the manifestation of these social-anxiety-related experiences and behaviors. What is happening in the person’s subjective experience at the point where maladaptive fear learning, the intolerance of uncertainty, or out-of-balance trait anxiety turns into social anxiety? These frameworks provide little-to-no accounting for that, and so social anxiety disorder is lacking in utility when it comes to providing a description and explanation of that phenomenological domain.
Contrast this to autism. Imagine that instead of social anxiety disorder, this person receives a diagnosis of autism, or goes on to receive a diagnosis of autism subsequently, which is, of course, increasingly common. Immediately, criterion A of the autism spectrum disorder diagnosis accounts for a broader band of social experiences—not just social anxiety, but other aspects of the phenomenology of feeling “weird,” of feeling like something is notably different about their means of participation in the social world. At this point, if the person again seeks out something beyond the criteria in the diagnosis that explains why that is, what they are likely to encounter is not just causative, but mechanistic theories: models that provide sequential, process-focused, relatively detailed explanations for the surface-level phenotype. For example, if part of this person’s experience is that “more than others seem to, I experience anxiety particularly in novel social situations, because I find it confusing to understand how to act in social environments I haven’t been in before,” via the diagnosis of autism, they could pretty easily find the mechanistic explanation of context insensitivity to apply to this experience. They would now have access to the concept that a contributing factor to their anxiety is difficulty inferring the social meaning of contextual clues that other people use as signals to understand how it is appropriate to behave. Because people often have a direct subjective experience of this perceptual difference, the mechanism of context insensitivity fills in a gap in their phenomenology of social difference that a diagnosis like social anxiety disorder leaves empty. The other aforementioned models of autism (monotropism, “intense world,” atypical predictive processing, and others) also provide mechanistic descriptions that many who are diagnosed with autism, or who find the diagnosis compelling, find to map on to specific identifiable aspects of their subjective experiences.
Does that mean that all of these mechanistic theories are necessarily correct? No, it doesn’t. People can be wrong about the attributions they make about their subjective experiences. But they are a significant strength of what autism is currently delivering that, for the most part, other diagnoses simply aren’t keeping up with. I always say that the utility of a construct is based on two things: how well it reflects reality and how well it enables us to interact with the aspect of reality it was designed to reflect. The virality of autism is showing us that phenomenologically speaking, in those regards, it’s blowing other adjacent constructs out of the water. Instead of writing it off as having to do with name recognition or a descriptive label for “weirdness,” case closed, I think we would do well to heed the deeper message and seek to understand more about the aspects of the construct that make it so potent. To credibly advocate for a return to increased diagnostic granularity in the population of people now being diagnosed with autism, or who adopt a self-diagnosis because they find the construct of autism appealing, the diagnostic constructs proposed as alternatives are going to have to do a lot more mechanistic and phenomenological heavy lifting than they currently are.
See also:
Some interesting (not indicating agreement!) comments from LinkedIn worth sharing here:
1) Steven Reidbord
Psychiatrist, psychotherapist
"This is probably true, that people are drawn to intricate mechanistic explanations to explain mysterious personal phenomena. That’s one reason psychoanalysis and neurobiological accounts have been popular in their turns, and why autism is now.
Unfortunately, intricacy itself says nothing of validity. A once popular model explained how the sun (and the rest of the heavens) revolved around the earth. Actual physical models, made of metal gears and wheels-within-wheels, showed how it operated. It was no doubt comforting to “understand” the world this way, even though it was completely wrong.
Other diagnoses can’t “learn” anything from the success of autism, unless the message is to make up compelling stories with no basis in reality. Science only advances as fast as it does, and pretending that we know more than we do has repeatedly misled and embarrassed us."
2) Rachael Winstanley
Child & Adolescent Psychotherapist in private practice
"I think this is an excellent piece, thank you to the author and you Awais Aftab for posting it. The description of the construct of autism being 'profoundly phenomenologically organizing' really powerfully captures my experience.
I spent a long time in psychodynamic psychotherapy because I believed that my difficulties were emotional, psychological, unconscious. I even trained in the field. Although I still find the Kleinian framework I trained in helpful, I didn't get 'better' because my 'issues' were not primarily emotional, they were differences in cognitive-perceptual processing, as described.
I am well aware, as are so many autistic people, that these models are approximations, and that these descriptions generated collectively by autistic people themselves may change, according to cultures, time and place etc. just like all our models of human understanding.
But many of us need explanatory or mechanistic models that organise our subjective experience to feel well. This is a profound and essential need, not a 'comfort' (how infantalising). Suggestions from 'experts' that we don't really understand what we're doing when we describe ourselves as autistic, that we've got it wrong yet again, really miss the mark."
3) Sindhu Ashim
Psychiatrist
"I think this article mistakes a consequence of cultural acceptance as a cause for it.
Autism’s theories feel compelling and widespread because the label is now culturally acceptable (neurodiversity is celebrated). By contrast, BPD already has detailed mechanistic accounts— Gunderson’s interpersonal hypersensitivity model (core rejection sensitivity→frantic efforts to avoid abandonment) and Linehan’s biosocial theory of emotional dysregulation (invalidating environments + biological vulnerability → extreme emotional cascades)—yet BPD as a construct is rarely experienced as patient-empowering. Similarly, schizophrenia’s neural, chemical & predictive-coding models of psychosis are "mechanistic" but evoke fear rather than appeal.
Edward Shorter’s insight (symptom pool effect) is that cultural legitimacy comes first and each generation has its epidemic!"
I upgraded my subscription for the sole purpose of expressing my appreciation to the author for writing this post and to Dr Aftab for posting it.
I read the original post, which was explicitly "not for me" because, in fact, I don't really care about the clinical diagnostic criteria for autism. Given the historical biases of autism diagnosis (with regard to gender, intelligence, arbitrarily specific behavioral markers, etc), it takes a lot of hubris to assume that the DSM-5 has finally nailed it. But when I saw Riva Stoudt's response post, I was heartened that someone would take on the challenge of explaining why we shouldn't let the internet "popularity" of autism (and its attendant trivialization and trend-ification) distract us from the fundamentally different orientation that the current, evolving framework of autism offers us in terms of reducing human suffering. It gives us not only some language for describing subjective experience that has previously been poorly served by vague words like "weird" and "intense" and "anxious," but also a more convincing unifying theory of why some people to have that hard-to-describe experience.
Full disclosure: I am not a psychiatrist or a clinician, so this comment might not be for you.
Where am I coming from? A lifelong effort to understand my own psychological suffering and that of the people around me, i.e. the so-called "human condition." Instead of trying to engage with what I consider to be the bad-faith arguments of the previous commenters (what does being an "attractive young woman" have to do with diagnostic validity? why would anyone claim "authority" on subjective experience?), I will describe why this post resonated so strongly with me.
About a year ago I read this article by Michael Edward Johnson )https://opentheory.net/2023/05/autism-as-a-disorder-of-dimensionality/) that posits a specific "mechanistic substrate" (neuronal network dimensionality) for autism and elegantly shows how DSM-5 personality disorder clusters can be characterized as strategies for finding stability in a highly dynamic nervous system. In other words, coping strategies. He describes such a nervous system as "maladaptive," in that it produces the "autistic bundle of symptoms," but also discusses how nervous systems of high network dimensionality can also have unique advantages ("winning lottery tickets"): creativity, sensitivity, outlier intelligence, etc. Ah! A concrete explanation for what philosophers and theologians and psychologists and therapists are always struggling to convince us of: that our vulnerabilities are inextricably intertwined with our strengths. It's an opening to *experience* non-duality.
Understanding one's neurosis not as a disease, but as a way of tolerating a highly dynamic internal experience makes it possible to develop a healthier relationship with that internal experience, and thereby weaken the neurosis. Why? Because it gives a *semantically neutral* framework for understanding what is happening and why it's happening. It's a MUCH more satisfying explanation for one's suffering than "I have a chemical imbalance" or "I'm still mad at my mom after all these years."
I believe the diagnosis and discussion of autism currently confuses the underlying condition with the strategies for coping with it. This is one of the reasons why adopting autism as an "identity" supported by internet content gets so messy. When people are considering how this framework applies to them as adolescents or adults, it can be a harrowing spiritual jungle to traverse. Some people grow up in contexts that support and/or accept their outlier behaviors; many don't and have to learn how to mask and/or suppress their experience (see: women, attractive and otherwise). But the autism framework can provide effective tools for confronting the fear, shame, and rigidity that are the natural consequences of living in families and societies that don't understand or recognize or even have language for the autistic experience.
Many people (I dare not speak for everyone) are seeking not just a practical "solutions" for their suffering (which, if they succeed, are almost always temporary), but the kind of relief that comes with a proximity to some kind of truth. For some people, the autism framework feels like truth. And that's hard to beat as a place to grow from.