Is PDA Real?

I don’t care if my PDA identity is clinically valid—should you?

In the past two weeks or so, TikTok has exploded with debates about PDA.

Is PDA a personality type that intersects with autism?

Are PDA traits caused by trauma?

Are PDA people just assertive autistics?

A skeptical approach to PDA isn't really anything new—PDA isn't recognized in the DSM-V or the ICD-11. Even in the tiny clinical bubbles where PDA is formally recognized, it's still controversial. I have no issues with healthy skepticism, and there's plenty of room for respectful debate here. 

Official definitions of PDA are pretty muddled. Where's the line between 'classic' autistic demand avoidance and pathological demand avoidance? How do you differentiate PDA from demand avoidance driven by low self-confidence, executive dysfunction, or autistic inertia? These are good questions—ones that both PDAers and classic autists struggle to clearly answer.

Many PDAers have a lot of intense feelings around PDA debates. I get that—PDA skeptics can be unnecessarily dismissive and aggressive. When you identify with PDA, questions about its validity as a unique profile can feel like an attack on a significant part of your personhood.

I definitely bristled watching Autistimatic's YouTube video that characterizes the concept of PDA in workplaces and schools as a "significant danger to all of us" and a "threat to public perception of autistic people.” I don't disagree with every point in his PDA videos, but that was pretty brutal to hear.

That said, I'm assuming that most skepticism is intended in good faith, so I’ll attempt to weigh in on the reality of PDA.

Is PDA Real?

This is the question of questions, y'all—this is the question is at the heart of most other PDA debates. 

I guess…define real?

Our concept of reality depends on our perception. In Perception: How Our Bodies Shape Our Minds, authors Dennis Proffitt and Drake Baer illustrate this point when they write:

"Our walking ability shapes the apparent walkability of the hill, which determines how we see it. You do not see the hill as it is but rather as it is seen by you."

None of us experience the world objectively, so this question needs to be more specific and clear. Still, I think "Is PDA real?" is often meant to be interpreted as:

Is PDA a developmental neurobiological condition or a social construct?

I dunno.

Sorry, but that's the best I've got here. There's not a lot of high-quality science available to back anyone's opinion on this one. My theory is that PDA has neurobiological and social/environmental components, but it's not like I have a stack of peer-reviewed research to back me up. However, there are a few things I can say with relative certainty: 

PDA is a helpful label for most people who are diagnosed or identify with the PDA profile.

For the sake of argument, let's say that PDA is a social construct without any neurobiological basis. Does that mean it's not real? 

Race is a social construct. Gender is a social construct. Cultures and religions are social constructs. I'd be hard-pressed to accept an argument that claims these things aren't real.

Social constructs have potent impacts on our very real lives. If PDA is a social construct, it's one that PDAers use to:

• Build a positive neurodivergent identity

• Create or find communities of like-minded individuals with similar experiences, struggles, and talents

• Unpack internalized negative labels like lazy, dramatic, defiant, crazy, etc.

• Process and release shame over stress responses, meltdowns, and/or shutdowns 

• Find relevant information that helps us understand ourselves and discover what types of support and accommodations may be helpful to us

PDAers are functionally distinct from classic autists.

I strongly agree with Jesse Meadows of Sluggish that demand avoidance has historically been a well-documented autistic trait. The concept of autistic demand avoidance significantly predates Elizabeth Nelson's idea of PDA as a unique profile of autism or a pervasive developmental disorder, and no research clarifies whether or not PDA has any clinically significant neurobiological distinction from classic autism. 

I'm personally pretty comfortable with the familiar view of PDA as an atypical autism profile. Yes, there's some debate about whether or not all PDAers are autistic, but there's a significant overlap between PDA traits and classic autistic traits. The vast majority of PDAers have at least a few classic autistic traits, and PDA traits and classic autistic traits have never had a clear-cut, widely recognized distinction.

I have zero interest in completely separating myself from the larger autistic community—a line of thought that I think is often rooted in ableism and autistiphobia—or in gatekeeping PDA. If a neurodivergent person says the PDA profile reflects their lived experience, that's good enough for me.

Functionally, I think that PDAers and classic autists are best served by access to an umbrella community for all autistics and overlapping but distinct autistic communities for their individual profiles. 

Anecdotally, some fundamental differences to consider include:

PDAers and classic autists have significant communication differences and do not instinctively communicate well.

PDAers often instinctively communicate better with other PDAers than with neurotypicals, the same way that classic autists communicate better with other classic autists. Obviously, this is a gross generalization, but I find that many classic autists struggle to communicate with PDAers and vice versa. 

An autistic Reddit user described their experience communicating with PDAers, and this perspective is in no way unique:

There are other autistics I *struggle* interacting with…Hypersensitive, defensive ones with high levels of PDA? I have to mask MUCH HARDER. It's MUCH harder to interact with them than NTs - I have to do an eggshell walk around their very, very fragile feelings. It's impossible to know what's going to set some of them off.

PDAers also tend to have more figurative styles of communication and often rely heavily on metaphor, symbolism, and hyperbole for clarification. This can be confusing and frustrating to classic autists, who generally prefer literal language.

PDAers tend to have a stronger affinity for role-play and fantasy.

Many PDAers are more comfortable in fantasy scenarios than in reality, and we often utilize role-play to self-regulate and manage the demands of our day to day-lives.

PDAers are more likely to experience high emotional lability.

Many PDAers relate to the "Jekyll and Hyde" analogy often used to describe our emotional lability and intensity. To be honest, I don't love being compared to a literary embodiment of evil. However, I still understand and relate to the concept.

Our emotions can be so all-powerful and overwhelming that it can really feel like we're being possessed by our own feelings. PDAers are much more likely to experience involuntary emotional outbursts that are characterized as "extreme" or "melodramatic." Externalizing PDAers often experience destructive or violent meltdowns, especially in childhood or adolescence.

I've often described my emotions as "having no middle." I don't consciously experience more subdued emotional states unless I pay very close attention to my feelings. From an outside perspective, my emotions can swing from calm to enraged instantaneously.

PDAers describe more "extreme" forms of demand avoidance.

We're also more likely to experience microdemands—the small steps that make up individual tasks—and other invisible demands as significantly disabling.

PDA's lack of recognition in the DSM-V or the ICD-11 does not mean that PDA is not real. 

The DSM-V and the ICD-11 are flawed diagnostic guidelines, not magical documents that determine what human conditions actually exist. Autism existed long before the ICD recognized it in 1977. Homosexuality was never a mental illness, even though the DSM claimed it was until 1973.

Honestly, the DSM and the ICD are inappropriate tools for recognizing neurodivergence, just as they were inappropriate tools for recognizing homosexuality.

We need an official framework for formally recognizing neurodivergence that celebrates natural human diversity and operates outside of the curative care model that has historically led to the oppression and abuse of vulnerable groups.

It's alarming that our only option to obtain formal recognition of neurodivergence (which is often required to receive accommodations or access social services) is a diagnosis through the medical model that pathologizes all but one neurotype. 

Seeking scientific validation for marginalized identities comes with risks.

A lot of PDAers and caregivers of PDA children want breakthroughs in medical research that justify the PDA profile as a "real" condition. Many PDA skeptics reject PDA wholesale because we lack an overwhelming medical consensus that backs our lived experiences. While I share the human drive to better understand myself and others, I don't care if my PDA identity is "clinically valid."

In the 2022 Sluggish article Validation, But At What Cost!, Jesse Meadows points out:

“The point of this work is not personal validation for autistic people — it's the development of very profitable treatments and genetic interventions that can alter human beings for the benefit of the capitalist state.”

It's necessary to be cautious with how much significance we give medical research in validating our lived experiences. Research on marginalized identities others us by its very nature. No genetic researchers are looking for the "straight gene," just like no neuroscientists are looking for neurobiological evidence to justify neurotypicalism. 

The implication is that marginalized groups are inherently aberrant—that our existence is only valid if it has an inherent physiological basis. That is, if we physically cannot force ourselves to become "normal."

The intersection of marginalized identities and medical research has always been unstable at best and harmful at worst.

In 2020, Catalina Devandas, the UN Special Rapporteur on the rights of persons with disabilities, warned that modern medical research without safeguards against ableism could revive eugenic ideas. This warning is underpinned by a long history of weaponized research, such as:

• Jon Meyer's transphobic, homophobic, and classist research that shuttered Johns Hopkins' gender-affirming clinic for almost 40 years and bolstered medical transphobia.

• Ole Ivar Lovaas' autistiphobic development of Applied Behavioral Analysis (ABA), a form of autistic conversion therapy that's still widely in use today. Lovaas claimed that autistic people were "not people in the psychological sense" and that intensive ABA therapy was a method of "constructing a person." 

• The long and ugly history of scientific racism, which has been used to justify slavery, eugenics, and xenophobic policy, and continues to pollute scientific research in the present day.

• Walter Jackson Freeman II's homophobic, misogynistic, and ableist experiments that lobotomized gay men, housewives who weren't having sex with their husbands, and "troublesome" children.

I'm certainly not against scientific research on PDA or neurodivergence in general. I embrace the myriad ways that high-quality scientific research can help us understand ourselves and humanity, but there's no guarantee that future research into PDA will affirm neurodivergent experiences and support the social model of disability.