By Patty Laushman
Have you ever heard of pathological demand avoidance (PDA)? While not a recognized diagnosis in the DSM-5, it’s a set of personality and behavioral traits that match a subset of people on the autism spectrum. It affects how they respond to everyday demands and expectations they have of themselves as well as the expectations others have of them.
Many people who experience PDA prefer to call it “Persistent Drive for Autonomy,” which is a much more useful description because it gets to the heart of the matter. Autonomy is one of the greatest motivators an individual has. Most people function best with at least a moderate degree of autonomy, but when that need is extreme, it can cause major problems in a person’s ability to function.
Externally, it looks like they tend to refuse to cooperate with requests from other people, even when complying is in their best interest. Internally, they may feel completely unable to do things that even they want for themself if those things feel like “demands.”
In this blog post, I'll dive into what PDA is, its symptoms, how it affects those who have it, and how to support adults who match this profile.
What is Pathological Demand Avoidance, aka Persistent Drive for Autonomy?
PDA is characterized by an extreme avoidance of everyday demands and expectations, such as those related to school, work, daily living, or social situations. It’s an extreme anxiety-driven need for an individual to have control over their life.
Since there is no DSM-5 diagnosis for this constellation of symptoms, they may have at some point been diagnosed with oppositional defiant disorder (ODD), a dead-end diagnosis that unfortunately leads to no useful treatment or intervention.
If many of your conversations with a person look like this, even when the request seems innocuous from your perspective or in their best interest, you may be dealing with PDA:
You: Do you want to…
Them: No!
Individuals with PDA may engage in behaviors that allow them to avoid these demands, such as withdrawing from activities, avoiding social situations, distracting the person who is placing the demand, making excuses for not doing something, or even lying if they are desperate enough to avoid demands.
Sadly, PDA can even rob people of things they want for themselves. They may really want to do something, but because it feels like a demand being made of them, they just can’t do it.
What is a Demand?
Individuals with Pathological Demand Avoidance (PDA) may experience a wide range of everyday situations as demands that others may not consider to be demands.
Some surprising examples can include:
Simple requests for information or cooperation, such as "Are you planning to shower today?" or "Can you hand me that pen?"
Following routines set up by others or being asked to change their routine in some way.
Social expectations, such as engaging in small talk, participating in group activities, or keeping in touch with people they consider friends.
Academic or work-related tasks, such as completing assignments, following instructions, or meeting deadlines.
Personal care activities, such as bathing, grooming, or getting dressed.
It's important to note that individuals with PDA may perceive and experience these seemingly ordinary situations as overwhelming and anxiety-provoking, leading to avoidance behaviors and attempts to resist or evade the perceived demands.
If you’re curious whether you or someone you love has pathological demand avoidance, while not a professional diagnostic tool, this free online pathological demand avoidance test for adults may help.
Pathological Demand Avoidance Signs in Adults
PDA can greatly impact the daily lives of those who have it. In addition to chronic frustration and shame, here are some common ways in which PDA may impact individuals:
Anxiety and stress: Individuals with PDA may experience extremely high levels of anxiety and stress in response to everyday demands and expectations, leading to avoidance behaviors and attempts to resist or evade the demands, which keeps them feeling “stuck” where they are in life.
Difficulty with cooperation: Individuals with PDA may struggle with cooperating with requests and instructions, even if they are simple or necessary tasks, due to their avoidance of perceived demands.
Social challenges: Interestingly, autistic adults with PDA can appear to have better social understanding and communication skills than other autistic people and may use this to their advantage. However, these apparent social abilities often mask difficulty processing and understanding social communication and situations. This may lead to difficulty conforming to social norms and maintaining relationships, which can impact their ability to form and sustain social connections.
Emotional regulation difficulties: Individuals with PDA may struggle with regulating their emotions, leading to emotional outbursts, meltdowns, or shutting down as a coping mechanism in response to perceived demands.
Rigidity and inflexibility: Individuals with PDA may exhibit resistance when their environment changes or they need to transition to a different activity, life stage, job, or some other transition. It’s important to note that there are different reasons someone may resist change. In the case of someone struggling with something colloquially referred to as autistic inertia, they are perfectly happy remaining in the state they are in. People struggling with PDA actually want to change; they just simply cannot overcome the demand required to change.
Masking and camouflaging: Individuals with PDA may engage in shame-driven masking or camouflaging behaviors to hide their PDA. They may work hard to mimic neurotypical behavior to cope with social expectations, which can be absolutely exhausting and lead to burnout over time, making dealing with demands even harder. It’s a vicious cycle.
It's important to note that the impact of PDA can vary greatly from person to person, and each individual with PDA has a unique strength and challenge profile. Understanding and supporting the individual's unique needs and perspectives can be crucial in providing appropriate support and accommodations.
Strategies for Supporting an Autistic Adult With Pathological Demand Avoidance
What’s critically important to understand and internalize is that no one chooses to be this way. There are biological, physiological, and sometimes genetic reasons behind the observable behaviors. When you believe the confounding behaviors are not willful, it completely changes the way you approach the person struggling with PDA.
If you have any doubts about this, do more research first to better understand PDA using the references at the end of this post until you feel like you can suspend judgment about the behaviors you are observing.
Your own frustration needs to be replaced with understanding and acceptance before you can effectively provide support.
Build a Relationship
There is so much shame experienced by people with PDA that trust and mutual respect are critical if you want to help. Most people with PDA feel they have been chronically misunderstood, and so trust in people who are in a position of power over them or trying to influence them in some way, such as parents, teachers, therapists, or bosses are not trusted until trust has been earned.
Whether you have known the person for decades or you have recently met, it’s critical to meet them where they are. You may have to do some digging to understand exactly what’s going on because the shame involved in having this profile and drive to mask it is so strong.
Connect with them by taking a genuine interest in who they are, what they like and dislike, their passions, and what they want for their life to build or improve your relationship with them.
Gain Permission to Help First
If you have a good relationship with the PDAer, it’s okay to offer to help them create a plan for achieving a specific goal. In every case, you should ask and gain permission to help create a plan first before you launch into helping to solve problems.
If they say no, you must calmly respect this.
It’s also okay to ask again later though because your timing may be better at another time.
Learn How to Use Declarative Language
People with PDA go through life feeling like everyone around them is making demands of them without regard to how they experience the demand. It feels like help is being done to them rather than for them. Naturally, they will start to resist as soon as the conversation starts to turn toward demands.
They may simply say "no" and refuse to continue the conversation. They may start shutting down and become unresponsive. They may employ complex humor or excuses to resist the demand. Also, depending on how emotionally regulated they are, they may be unable to moderate their emotions and go from nothing to explosive behavior very quickly.
The key to engaging them in productive conversations is to learn how to use declarative language as opposed to imperative language when they are relatively calm, regulated, and open to conversation. Using declarative language helps them feel competent, connected, and understood rather than put upon.
This naturally creates opportunities for learning in areas of seeing the big picture, reading nonverbal communication, problem-solving, perspective-taking, and self-advocating, all things that help them get unstuck and moving forward.
When you have a good relationship with the person and do this successfully, they will feel empowered to get the help they need rather than feeling shamed by their challenges.
For a crash course on declarative language, I recommend a book by Linda K. Murphy, MS, CCC-SLP, called Declarative Language Handbook. It’s written for clinicians, teachers, and parents of kids, but it's a perfect guide for parents and spouses of autistic adults as well. I promise they will thank you!
Get Them in the Driver’s Seat
If you want to support someone with PDA, once you master declarative language, it’s essential to get them in the driver’s seat of their own life. Whether they are a teen or an adult, this way of being in the world has been theirs for their entire life, and they have spent a lifetime feeling like things were being done “to” them rather than “for” them.
Imposing your own goals on someone with PDA is never a winning strategy. Ideally, you are working to help them achieve their goals for themselves, but at a minimum, you need to collaboratively figure out where your goals overlap and start from there.
Keep in mind that even if someone with PDA wants to do something, if it feels like a demand to them, even self-imposed, this may be a deal-breaker. If their internal dialog is about how they “have” to do a thing, helping them shift their mindset toward recognizing that they want to do it is the first step. Remind them of how the demand is relevant to their overarching goal to help them make the shift.
Support Executive Functioning Challenges
If they struggle with executive functioning challenges, which is common in people with autism and PDA, they may literally need help deciding what their priorities are, creating a plan for achieving their goals, figuring out what the next step is, getting started on that next step, persisting through the step, and keeping the momentum going. But if you launch into “helping” without gaining permission first, it will feel more like an assault than help.
Ask them what their goal is, and then ask what their plan is for achieving it. Always let them go first! If they don’t have a plan or you know their plan is not doable, ask permission to help. If they agree, give them options for ways you can help and let them choose! Here are some helpful questions you can ask after you make it clear you want to support them in achieving their goals (rather than your goals for them):
"What is your plan for …?"
"What is the next step?"
"When do you plan to do that?"
"How will you remember to do that?"
"Would you like my help remembering?"
"Is there something helpful I can do if you forget?"
Be Patient and Flexible
This goes without saying but being patient and flexible when trying to influence someone with PDA is critical. Everyone has bad days, but a bad day in the life of a PDAer might mean literally getting nothing productive done.
Shame-free timeouts when their anxieties are rising can be helpful. Having access to a safe, demand-free space they can retreat to can make a huge difference. If a problem-solving session or conversation becomes too much, encourage them to ask for a time-out to calm their anxiety and revisit the conversation later.
If their plan for achieving a goal does not seem to be working, discuss it. Confirm that the goal is still a priority of theirs. Then rather than trying to solve the problem for them, let them go first coming up with alternative ideas for achieving the same goal. Only then should you ask for permission to offer alternatives you have in mind.
To maintain your hard-won trust, it’s essential to back off when the person is feeling overwhelmed or incapacitated by anxiety. Then offer gentle, shame-free accountability when they are not. If it seems like they are never in a state where they can have a conversation, it’s time to bring in professional help.
Conclusion
Pathological Demand Avoidance (PDA) is a relatively little-known profile that describes a subset of people with autism spectrum disorder that can greatly impact the daily lives of those who have it.
If you suspect that you or someone you know has PDA, there are many things you can do to help them get unstuck and moving forward.
The first step is developing a deep understanding of their challenges and shifting your own mindset away from willfulness. Then build a trusting relationship, get them in the driver’s seat of achieving their goals, and provide patient, flexible support.
While PDA can be challenging, it's important to remember that those with PDA are not choosing to behave this way. By providing support and understanding, we can help individuals with PDA live fulfilling and meaningful lives.
For More Information
Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders by E. Newson, K. Le Maréchal, and C. David; BMJ Journals.
PDA North America: Support and resources for individuals and families living with pathological demand avoidance.
The PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum by Harry Thompson
PDA Society: Provides information, support, and training about PDA for individuals, families, and professionals. Aims to increase acceptance and understanding of a PDA profile and to improve outcomes for individuals and families by focusing everyone involved on “what helps.”
Sally Cat’s PDA Page: Includes an informal PDA test for adults