Essential Insights Into PDA, Autism, and Anxiety

A special needs advocate shares her story about how learning about a different kind of PDA changed her life forever.

Gwen can’t have autism. She makes eye contact with people. She engages with others. She loves to role-play and even pretends to be her favorite movie character.

Repetitive body movements? There are none. Sure, there are some sensory issues, and she can struggle with relating to others, but that’s not enough to consider her autistic, right?

After a very long 18-year journey, I finally know my daughter has PDA. Pathological Demand Avoidance, or PDA, is a profile of autism. It was first identified by British psychologist Elizabeth Newson and is characterized by the anxiety-driven need to be in control and avoid the demands and expectations of life. (PDA Society, UK)

It is often misdiagnosed and largely misunderstood. The more that parents and clinicians learn about PDA, the better able we are to address our children’s struggles early on, bringing greater peace and stability for both the person with PDA and their family.

I desperately wish I had known about PDA years ago. So many things we’ve struggled with as a family now make sense, such as why my daughter fought nearly everything that was asked of her.

It explains why putting on her shoes, eating at the table, going to school, getting out of bed, or any one of the other countless normal expectations created a havocked response or flat-out refusal from her. Life was an endless tug-of-war of me trying to be a good mom and raise a responsible child, and Gwen fighting me every step of the way through constant and fiery tear-filled proclamations of, “I can’t!”

At four years of age, Gwen’s physician at the time said she struggled with ADD. At six years of age, Gwen received a diagnosis of ADHD from a pediatric behavioral psychologist.

When she was eight, I was told Gwen would “grow out of it” by a pediatric psychiatrist. Of course, she didn’t grow out of it, and by the time she reached her tenth birthday, still fiercely fighting most requests, demands, or expectations, I was confident I had failed Gwen as a parent. School was a struggle, home was a struggle, life was a struggle.

At 12 years of age, Gwen’s aversions to everything continued. Her new pediatrician suggested we investigate a comprehensive evaluation for autism as a possible diagnosis. Was the answer finally here? Could this be a new beginning?

I was overjoyed when informed that Gwen had received a positive autism diagnosis. She would now be eligible for new support services and therapies.

Medications prescribed to treat challenging autistic behaviors would also be an option. We were finally on our way to a more peaceful life! Or so I thought.

By the time Gwen turned 17, we were both exhausted. Therapies and medications designed for classic autism proved to be of little help. It was as if we had been living out the movie “Groundhog Day” for 6,205 days.

With puberty, teenage attitude, and a growing frustration at not being understood, Gwen became physically aggressive to the point where a three-week stay at a psychiatric hospital was warranted. It was one of the lowest and most heartbreaking points in my life.

I can only imagine what Gwen must have experienced during her stay there. Especially when only six months later I would discover what had truly been the underlying cause of all her refusals, tears, and anger.

In September 2021, Gwen began her junior year of high school. Three weeks in, Gwen was displaying erratic behavior at school and even more aggressive behaviors at home (beyond the typically challenging level).

She attempted to mask her true feelings of frustration while at school and worked very hard to behave “as expected”. However, this meant she would pour out all her pent-up anxieties once reaching the safe space called home.

I found myself in a place of both hopelessness and anger. I was frustrated with the school. I was frustrated with myself. I was frustrated with Gwen.

I had a sense of despair and deep sorrow that we would be sentenced to live this challenging life forever. I requested a meeting with the school, not sure where it would go, but still hoped against hope that we could find a resolution so that Gwen could attend classes. It was from this meeting that our lives changed forever.

One of the people attending the school meeting that day was a special education administrator who had been on the educational rollercoaster ride with Gwen and me for the past 10 years. She knew Gwen well.

During our meeting, she said to me, “I think you may be interested in reading an article. It sounds so much like Gwen.” The article was on PDA.

I thought, “PDA? What do Public Displays of Affection have anything to do with my daughter??” I soon learned that we were not talking about my mama’s PDA.

To say I was ecstatic after reading the article would be an understatement. I laughed. I cried. I could barely sleep for days from the sheer exhilaration of having found something definitive to explain my daughter’s behavior!

It was a game changer. I immediately jumped into learning more about PDA.

Hallmarks of PDA

I soon came to understand three important hallmarks of PDA autism. The first relates to the amount of anxiety experienced by the person with PDA. This is not the kind of anxiety one experiences from taking a test or learning to ride a bike for the first time.

This is the kind of anxiety that permeates every moment of every day. It is the driver behind every thought, every action the PDA individual has.

On a scale of 1-10, an autistic person tends to deal with a sustained anxiety level estimated at 4-5, whereas a person struggling with PDA has a sustained anxiety level closer to 7-8. ( Kerbey, 2022). It is this lens through which they process every aspect of their life.

Hallmark 2

A second hallmark of PDA is the demands. For me, the word “demand” has always conjured up images of orders forcefully given. A word with a very aggressive feel.

However, in a PDA individual’s world, a demand can be literally anything that’s perceived as requiring action on their part. A demand can be as simple as, “Could you please put your toys away?” or “It’s time to get your teeth brushed.”

It can also take the form of unspoken yet understood expectations. Riding in the car with your seatbelt on or putting on a coat when it’s cold outside are examples of unspoken demands.

There are also the self-imposed demands. These are the endless ticker tape of thoughts running through the PDAer’s mind from the moment they wake up until the moment they fall asleep. “I should be getting out of bed.” “I know I should be taking a bath today.” “I’m supposed to go potty on the toilet.” “I need to get my clothes on.” “When I leave my bedroom, I’ll need to behave in a certain way.”

The list goes on and on with hundreds of internal demands running through their head in one day.

For most of us, they are demands we respond to with little or no thought. They are automatic for us.

For a person dealing with PDA, however, each and every task can bring with it a tremendous amount of internal stress. The anxieties, in turn, can build upon one another. Add in sensory issues common with autistic individuals such as smells, sounds, textures, and visual stimulation, and the PDA individual’s anxiety level becomes exponential.

Hallmark 3

A third hallmark of PDA is avoidance. This is yet another highly misunderstood aspect of PDA. Since there are such intense feelings of anxiety that come with nearly every request life makes, a person with PDA will do nearly anything it takes to avoid that invasive feeling.

The resulting behavior becomes a form of self-protection. This self-protective behavior will very often fall outside what we would consider acceptable, normal, or appropriate. These “inappropriate behaviors” are easily misconstrued as sheer stubbornness or defiance on the PDAer’s part.

I speak from personal experience. Without understanding what avoidance looks like in the context of PDA, I often viewed my daughter’s behavior as rebelliousness.

I wasn’t the only one who perceived Gwen’s behavior in that same light. So did the school, family, and society. We were all uninformed and therefore, easily fell into judgment.

As Gwen’s parent, it was not uncommon to be on the receiving end of looks and comments. “That child is being given their way far too often”, “If she were my child, she would not be allowed to get away with that behavior”, or “That child needs parents who know how to discipline.”

But what if we step outside the box of traditional thinking for a moment? What if we allow ourselves to step into a PDAer’s world? What if we consider the actual level of anxiety felt by the individual with PDA?

Harry Thompson, a PDAer himself, describes anxiety levels felt in response to a demand as equivalent to anxieties felt by a mother whose baby is being ripped from her arms by a stranger. (Thompson2022). With feelings this intense, it’s no longer a matter of that individual defiantly saying, “I won’t!” to a request or a demand, but rather an overwhelmed cry of, “I can’t!”

The fundamental need to self-protect drives the behavior. For a person with PDA, the choice simply does not exist. In all situations, and at all costs, the internal feeling of safety must be protected lest control be taken away, and the anxieties become all-consuming and immensely unbearable.

Our changed life

My mindset and approach with my daughter completely changed once I understood these hallmarks. I began to look at life through her eyes. I began to consider her feelings and anxieties when I’d hear her say, “I can’t.”

I began to educate myself on PDA so that our family could discover peace and begin healing. In doing so, our relationships have grown stronger with an emerging level of mutual trust. After 6,390 days of crisis, there exists a kind of peace we’ve never experienced before.

If you suspect someone in your family or someone you know struggles with PDA, please reach out. It’s a condition that’s incredibly isolating for both the PDAer and their family. You don’t have to go it alone.