How PDA Kids Meet Autism Criteria: A PDA Lens on the DSM-5

 If you’re currently waiting on an autism evaluation and you suspect you’ve got a PDAer (a kid with Pathological Demand Avoidance), you’re likely worried. I know I was. In the months between discovering PDA through a Facebook parent group for explosive kids and sitting down at the Duke Autism Center, I drank from a virtual firehose of information. Podcasts, blogs, experts, lived experiences – I soaked up every ounce of insight I could get. 

But I was still terrified: What if my kid doesn’t seem “autistic enough” to get diagnosed? I wanted a diagnosis desperately. Diagnosis was a gateway to identity, connection, and community resources. Plus, I just needed to know for sure. 

After all, we’d already had several trained professionals dismiss my questions based on surface-level attributes.

“He makes eye contact. You’re fine.” 

“I’ve been working with autistic kids for years, and I know that your son is not autistic.” 

“He’s got so much empathy. He’s got friends. He feels deeply. I don’t think he has autism.”

These faulty misconceptions about autism hurt all autistic people, not just PDAers.

When thinking about autism, especially in the context of PDA, it’s important to recognize that these children often meet the criteria in ways that might look different from what’s typically expected. 

PDA is typically defined as a profile on the autism spectrum characterized by a hypersensitivity to threats and a primary drive for autonomy. This can sometimes make it challenging for parents and professionals to see how these children fit into the broader autism spectrum. However, by examining the autism criteria in the diagnostic standard across most of the world (called the DSM-5) through the lens of PDA, we can better understand how these kids meet the criteria in their own unique ways. 

Let’s dive into the DSM-5.

[Actually, a caveat: I cannot dive into the DSM-5 criteria without first giving a trigger warning that the DSM defines autism through a decisively pejorative lens. No “strengths-based” mindset here. Autism is not simply a difference in DSM-land. It is a deficit and a problem. And must be a deficit to qualify for diagnosis. So hold your nose and grab your grains of salt, my friends. Noooow we can dive into the DSM-5.]

Diagnostic Criteria #1: Deficits in Social Communication and Social Interaction

In order to meet DSM criteria for autism, a person must meet all 3 criteria in this first section. They must show deficits in social-emotional reciprocity (as neurotypically defined), deficits in nonverbal communication, and deficits in developing and maintaining relationships. PDAers often show differences (AKA deficits) in social communication and interaction, but these can appear in unique ways from the typical presentation in autism:

• Social-Emotional Reciprocity: PDAers typically do not “see” social hierarchy and often treat everyone as their equals. They may even prefer to take on the higher-status role in any setting or relationship, with children saying, "You're not the grown-up. I am" or "Listen to me, I'm your real teacher," in a classroom setting. Older PDAers may have difficulty understanding the difference between themselves and a younger person, or the need for adjustments and accommodations for younger people.

  They might engage in seemingly sophisticated back-and-forth social interaction, often using charm or social mimicry to avoid demands. However, this is more about self-preservation than true social reciprocity, as they may struggle with maintaining deeper emotional connections or understanding others’ perspectives. If you ask a PDAer about these strategies, they will say, "I have to do that so that..." or "That's the only way to...," demonstrating their awareness of these as strategies and requirements. (This also demonstrates that neurotypical norms of social reciprocity exist as demands on their nervous system, which also explains why they explode on those they love over simple requests.)

   

  PDAers often use role play, pretend, masking strategies, and scripting in social relationships. They may feel more comfortable engaging socially in a costume or as a favorite character. They may use scripting or echolalia to communicate, but it is subtle and used appropriately, so people do not truly know until the kid uses the script out of context or until they truly ask the right questions. They may be social chameleons, subconsciously imitating the personality or social mannerisms of friends, characters, or celebrities they admire.

   

• Nonverbal Communicative Behaviors: It's important to remember that there are two sides to this DSM criteria: How PDAers use nonverbal communication and also how they read and interpret nonverbal communication. PDAers might be very adept at using body language or facial expressions, but this nonverbal communication differs in subtle but important ways from neurotypical use.

  PDAers are often exhausted by social interactions and interpreting all the nonverbal communication expected in extended social settings, even when they seem extremely social and energized by being around people. What others don't see is the reverberations of these social events in the hours and days afterward. Once in a safe setting, PDAers will express their exhaustion and discomfort with extended shutdowns, explosions, and exerting dominance over the people that feel safest to them.

   

  When you talk with PDAers about nonverbal clues, they often have shallow or highly rigid interpretations of how certain gestures or tone of voice can be used. They may get in heated arguments with their friends and parents about the "right way" to use these techniques, showing the level of effort required to maintain their social masking. 

   

  Their use of and understanding of nonverbal cues can be inconsistent, especially under stress. PDAers who have been through burnout are often much less-masked than they were pre-burnout, and their nonverbal communication may shift dramatically, like making eye contact, reading others' emotional signals accurately, or interpreting communication without support.

• Developing and Maintaining Relationships: Relationships can be challenging for PDA children because their need for control often leads to difficulties in typical peer interactions. They might prefer relationships where they can dictate the terms, which can lead to struggles in maintaining balanced friendships. They may create elaborate stories to make meaning from social relationships when they lack genuine understanding. 

  Many PDAers' experience difficulty with either making or maintaining friendships. Some make new friends effortlessly, but have a trail of broken friendships in their wake (and a very confused PDAer who doesn't know what went wrong). Some never make a single friend and feel excruciatingly lonely, as though friendship is a inscrutable system that they cannot penetrate.

   

  PDAers may significantly prefer to talk and spend time with people who are in a different phase of life than them, like a teen who loves to be with their kindergartener cousin, or a 6th grader who's best friend is her 65 year old grandpa.

TL:DR

PDAers might appear socially adept in certain contexts, but their social interactions differ in fundamental ways from the neurotypical pattern. PDAers often lack the deeper, reciprocal connections expected for their age. The struggle with making and maintaining friendships. Their social behaviors are deeply dependent on managing their nervous system stability, need for autonomy, and use of control rather than forming genuine connections. When PDAers are safe enough to form genuine connections, these will often be built on character-driven play, shared special interests, and a low-demand, radically accepting environment. PDAers often experience very intense emotions and massive mood swings. Combined with difficulties with impulse control, PDAers often express aggression and violent behaviors, seemingly “out of the blue.” In reality, their highly sensitive nervous systems are detecting threats that others cannot perceive or understand, which they mask and manage, until they cannot manage anymore and erupt. They are also processing much more social data than others, and are constantly having to translate and decode neurotypical social norms.

2. Restricted, Repetitive Patterns of Behavior, Interests, or Activities

Though the outward expressions of PDA-rigidity are different from a more typical autistic expression, the underlying rigidity is equally evident. The criteria in the DSM-5 for autism also say that a person must demonstrate at least 2 of the following 4 restricted and repetitive behavior, interests, or activities:

1. Repetitive Motor Movements or Speech: This category includes many of stereotypically-defined autistic traits such as scripted speech (using the same words in the same ways or at the same times), stimming (flapping hands, tapping fingers, toe walking, looking at fans and wheels spinning, listening to the same music over and over), and echolalia (repeating words or phrases heard in other contexts).

   While some PDA kids may show these repetitive behaviors in classic ways, others might have less obvious signs. Stimming may be more subtle, like tapping toes, humming music under your breath, looking at the clouds out the window, playing with a pen cap, biting lips, tensing and releasing muscles, and many other non-visible stims.

    

   Repetitive scripted speech may center around issues of fairness, demands, or justice, like "That's not fair," "You can't make me," or "You're mean."

    

   It may be difficult to determine when a PDAer is using scripted speech or echolalia because they often use it in very subtle, socially sophisticated ways. I know a toddler who would repeat, "Intriguing..." with an eyebrow quirked up when her parents would make social asks of her, as though she was deeply pondering and evaluating the merits of the ask. Her parents eventually traced this back to a show that she watched, where an adult said the same to another adult who was telling them what to do. She accurately identified this as a social strategy to deflect direct asks and used it over and over.

2. Rigid Adherence to Routine: PDA kids may strongly resist routine demands and can be very rigid in their need to control situations or the environment. This insistence on control and autonomy, rather than routine and sameness, reflects their anxiety about demands and change. PDAers may actually rigidly insist on routine, but simultaneously resist sameness, but insisting on an exact routine every day with novel elements every time. "Tell me a NEW bedtime story, exactly like last night but all different," where the pattern remains the exactly, rigidly the same, but also must be different every single day.

3. Highly-Restricted Interests "With Abnormal Intensity or Focus": A PDAer's interests might seem typical, particularly on the surface, but the intensity with which they pursue these interests can be much more focused and rigid than it appears at first glance. PDAers’ interests can become so intense that their interests appear as obsessions. PDAers will often need to pursue their interests exhaustively, 12 hours a day, for a short period of time, and then rapidly cycle through new interests every few days. PDA special interests may center on people, such as one specific friend or a character in a show. They may also take on dark themes, with many PDAers having special interests in horror characters, shows, or themes, like "bad guys," animatronics, weapons, robbers/jail, or being evil. Like many highly-masked autistic people, PDAers' special interests may totally blend in with same-aged peers, such as an interest in cars, make-up, music, or certain book series'. However, when you investigate the number of hours that a PDAer spends thinking about or invested in their special interest, it is clearly on an entirely different level from their neurotypical peers.

4. Sensory Challenges: Sensory issues in PDA can be pronounced, with many PDAers' only documented diagnosis being "Sensory Processing Disorder." Sensory challenges are often a significant factor in a PDAer's life. PDAers often have extraordinary difficulties with food and eating, with very narrow sensory profiles that they can tolerate in food or a high-need to control their foods. Toileting may also be a place where sensory challenges are manifested. 

3. The Impact of Early Symptoms and Daily Functioning

The DSM states that "The onset of the symptoms is in the early developmental period (but deficits may not become fully manifest until social communication demands exceed limited capacities)." In atypical autism, particularly for girls, women, and AFAB folks, the deficits may not be clear for others to see until early puberty, roughly middle-school aged here in the United States, when social demands skyrocket among tweens and teen girls. This is also true for PDAers.

However, PDAers often show signs of autistic behaviors from an early age, even in infancy, but they may be misunderstood as simply being oppositional, "fussy," or highly anxious. Many PDAers were extremely difficult to soothe as babies, requiring nearly constant co-regulation. Sleep challenges often become extreme from an early age, with an inability to soothe through sleep-wakings, leading to years and even decades of sleep challenges. Many PDA tweens and teens still need considerable support from parents and caregivers to get to sleep and stay asleep, with teens requiring elaborate bedtime routines that are more commonly associated with toddlerhood. Though seemingly less common, PDA babies and toddlers may equally be extremely chill and understated. With one of my children, it was almost as though they weren't even in the room, which I can now look back on and see as a signal of their dissociation and overwhelm. 

Understanding PDA as part of the autism spectrum requires recognizing how these early behaviors are not just anxious or oppositional but are rooted in the core features of autistic neurology, albeit expressed in a different way.

4. Navigating the Diagnostic Process with PDA in Mind

If you are pursuing diagnosis for your PDA-loved one, it’s important to communicate the nuances in their autistic identity to evaluators. That said, as PDA gains international recognition (yay! hallelujah!), it also gains informed pushback and criticism.

Many of these criticisms, particularly those from Black and marginalized communities, are so needed to push the field toward a more inclusive diagnostic definition and a more equitable representation of lived experience. I have particularly appreciated the nuance around the too-common differentiation between PDA and ODD, which masks the racialized realities underlying these two diagnoses. For more information, you can check this post and the work of Kaligirwa, who writes online as @blackspectrumscholar. Here's their podcast interview with Dr. Tay that investigates the unique and painful challenges in the diagnostic experience for Black autistic people.

However, some evaluators are dismissive of PDA in its entirety, and may not be open to your advocacy on PDA specifically. This absolutely happened for us in one of our diagnostic experiences, when the diagnostician explicitly told me that they "did not believe in PDA and would not include it in their process." In such a case, you may not mention PDA nor push for a “demand avoidant profile” note on your diagnosis materials. Instead, you may simply use your knowledge of PDA as it intersects with autism criteria to best narrate your child’s brain and body to your evaluator. 

Finding an evaluator who has experience with looking beyond the typical presentations of autism to understand how your child fits the criteria may be crucial. Evaluators with experience and training in trauma, LGBTQIA+ communities, and BIPOC communities may offer such an open-minded and nuanced view. Finding the right provider can make the (already so challenging!) diagnostic process more complex, but it’s crucial for getting the right support.

If you want to dig into atypical expressions of autism more fully, I highly recommend the work of Dr. Donna Henderson, Dr. Devon Price, and Dr. Morenike Giwa Onaiwu.

Final Thoughts from Me: 

I am not an assessor nor a psychologist. I am a PDA autistic mom on the internet, so take all of this with your own wisdom and research fully in view. Research on PDA is in its baby season. We’ve only just begun to understand the interrelationships between neurodivergences writ large (ADHD/autism/learning differences), and when you drop PDA in the mix, it only gets more complex and swirly. For now, I am writing with the understanding that PDA is a unique profile within the autism spectrum, which is the best and clearest path to diagnosis for most of us worldwide. 

Understanding how PDA criteria intersect with the DSM-5 autism criteria can help parents and professionals better recognize and support these PDA children with a pathway to diagnosis. By viewing the criteria through the lens of PDA, we can see that these kids meet the diagnostic requirements in their own distinct ways, helping to ensure they receive the understanding and accommodations they need.