How Pathological Demand Avoidance Affects Me

Jack was in his early 50s when he discovered pathological demand avoidance and realised it might be the cause of all his difficulties with getting things done. For World Autism Awareness Day (April 2) and Autism Awareness Week, he told us how the condition has affected his life and what understanding it did for him. 

Q: Hi Jack, welcome back yet again. Let’s talk today about pathological demand avoidance. For those who don’t yet know what it is, could you first explain what it is?  

A: Pathological Demand Avoidance (PDA) is a type of autism-spectrum disorder first described by British psychologist, Elizabeth Newson, in the 1980’s. It describes a subset of people with high-functioning autism-spectrum disorder and is characterized by an extreme resistance to completing everyday tasks or anything perceived as a requirement. As such, it can be quite debilitating since it makes even the simplest and most routine tasks nearly impossible at times.  

How does pathological demand avoidance present in your life and how often do you encounter it as a school teacher? 

I am now in my early 60’s and didn’t realize that I had PDA until I was in my early 50’s or about ten years ago. At the time we had just discovered that my young daughter was on the autism spectrum. After reading the symptoms of autism, I realized that not only was I on the spectrum, but my sister, mother, and two nieces were, too. 

While we were exploring treatments for my daughter, I came across a PDA symptoms checklist and realized that it fit my daughter, sister, and one of my nieces as well. 

Once you have a diagnosis or suspected diagnosis like this as an adult, you immediately cast back across your life to re-interpret events. I realized that PDA had cost me jobs and my first marriage. 

I realized that I had extreme difficulty managing money as a young adult. When I was living by myself, I would on a somewhat regular basis allow the electricity to be cut off in my house. I would receive the bill and just be incapable of paying it even though I had the money to do so. The steps to doing so would just feel overwhelming. I would be paralyzed with anxiety at the prospect of paying the bill. So, eventually, the electricity would be shut off. I’d usually wait a day in the dark before going down and paying the bill and late fee and wait another day for it to be turned back on. That is probably the best example of PDA. The ridiculousness of the situation exemplifies just how perplexing the whole thing is.

I remember sitting on the couch with my first wife near the end of our marriage with her demanding that I write the check to pay a bill. I just couldn’t do it. Fed up with my inexplicable refusal, she wrote the check and mailed it. She left me a few months after that. 

Another example was occurred during a staff meeting at a treatment center. A co-worker’s father had died, and we were passing around card to sign. When it came my turn, I couldn’t do it. I just couldn’t. I sat horrified by my own inability knowing that I should, but I couldn’t. Of course, I immediately alienated everyone there. 

One of the things about autism-spectrum disorder including PDA is that it is a developmental delay, meaning that your brain is maturing more slowly than those of your peers. You may not gain all of the skills that your peers come to naturally, but some of them will develop more slowly. As I’ve gotten older, I have been able to manage my PDA better in part because my brain became more mature.

A neurotypical brain reaches its full maturity by about age 25. Mine didn’t until I was about 35 and even then, I needed to work hard on managing the anxiety that drives PDA. 

While it makes many of the routine tasks of teaching difficult, it helps, too. I understand and am sympathetic to any student who has a mental health disorder or any difference from her age group, especially those with PDA. I have advocated for such students in staff meetings and with their parents convincing the parents to seek testing in order to instigate an IEP or educational support program for their child within the school. I have also encouraged faculty members to adapt their classroom requirements helping them to better understand the baffling reactions of some of their students.

Out of a class of 20, I have at least one student with autism-spectrum disorder in every grade level I’ve taught. Sometimes more than one. Every year, I have at least one new student with PDA out of the five or six classes that I teach.  

What changed in your life after you realised such a condition existed? Did you have to go through anything special after being diagnosed with it? 

My inexplicable behaviors became more understandable. That was the biggest effect. Even today, I’ll recall a memory that included me being frozen by anxiety unable to perform some routine task, either at a job or in a social situation, and realize that it was yet another example of PDA afflicting my life. 

Nowadays, I realize that if I don’t get started with certain tasks straight away, I won’t ever do them. That really helps with doing the routine tasks like housekeeping chores. Since moving to Cambodia, I am our housekeeper since I am not working this year, I have had to do everything with a minimum of procrastination. It has helped for me to just say to myself, “If I don’t do this right now, I’m not ever going to do it.” 

The biggest thing that has changed, though, is that I’m more accepting and understanding of myself, especially, when I am having a difficult time getting started with doing something. 

What strategies do you use to cope with pathological demand avoidance these days? What works best and what does not work at all?

I realized that when I am given a task, I will unconsciously tag it as something that I’ll never be able to do. Before my “diagnosis”, I would rarely realize it, but, now with my new understanding, I more frequently catch myself thinking about it. For example, my daughter wanted modeling clay for a Christmas present this year. Buying gifts in general has been a non-starter in my life. It is something that I just can’t do and because of it, I have abandoned significant relationships. It caused me to distance myself from my mother and sister, for example. I felt like I was letting them down since they never failed to get me birthday and Christmas presents, but I struggled so mightily to reciprocate. I felt like they would resent it and be angry with me. 

Getting something like modeling clay in a developing country like Cambodia could be a very difficult task, especially in the time of #COVID19. You have to reach out to people to ask where it might be found; you have to call ahead and overcome whatever communication barriers might be there; you have to go to the store and negotiate the purchase. Going to the store is not as easy as it sounds, though. Addresses often aren’t reliable. Phone numbers don’t always work, but that doesn’t mean the store is not open. I still haven’t gotten the modeling clay. I probably won’t get it for her upcoming birthday, either, even though I really really want to. It is maddening. But the anxiety and uncertainty are nearly impossible to overcome. It really assaults your self-esteem. After a lifetime of it, it really grinds you down. Honestly, I am ashamed of myself for failing to do something like this.

Learning to relax, focusing on getting started, and breaking things into more manageable steps all help, but as the modeling clay example shows, it doesn’t overcome everything.

Which 3 objects or people are helpful for a person with pathological demand avoidance? 

I can’t say that there have been any people that have been explicitly helpful to me. There certainly haven’t been any objects. There have been some techniques, though.

One of things I’ve begun doing that seems to help a lot is thinking through the things I need to do the next day as I lay in bed before going to sleep. I will imagine the sequence of events of the next day in exquisite detail: getting up at a specific time (I usually get up at 5:00 AM without an alarm), making lunches and breakfasts for my wife and daughter, doing the dishes afterward, starting the laundry, getting my daughter started on her school work (we’ve pulled her out of school because it has proven to be overwhelming for her), and so on. 

Avoiding procrastination. My best semesters at school were those in which I took 18 semester hours. The average semester course load was twelve. My worst semesters were those in which I had dropped from twelve to nine or six. The difference was procrastination. With 18 hours, I had no time to procrastinate. I either did the assignments right then and there, or I was sunk. With nine or six hours, there was plenty of time to do it later. Getting started is more than half of the battle.

In that sense, routine helps. I’ve found it difficult to maintain a schedule for most of my adult life. The only thing I’ve done routinely ever is walk my dogs twice a day for obvious reasons. I like teaching because of the routine and predictability. My sister retired from the US military. She stayed with it because of the routine and predictability. 

And, identifying emotions. One of the sources of anxiety, confusion, and refusal is the cacophony of emotional reactions when a demand is placed upon me. It’s like every emotion is triggered at once and overwhelms me, which causes the anxious paralysis. Our emotions exist to help us navigate and cope with our environment. If you can’t accurately identify your emotional response to an event, then you cannot react to it properly. Your best course of action then is to do nothing until your emotions get sorted out. By focusing on that emotional response, I can determine which emotions predominate. I can engage in some soothing self-talk and reduce my anxiety.

Some things clearly don’t work. Rewards and punishments don’t work with people with PDA. Logical explanations do, but you often have to have time for those explanations to percolate. If you put too much pressure on someone with PDA and start limiting choices and options, you’ll get an emotional meltdown. These can be pretty ugly and include real violence, lots of swearing, hysterical crying, and other histrionics. 

Surprises are usually bad. Don’t surprise people with PDA, especially with requirements. Instead of saying, you’ve got to do this assignment right now, you should ask them when do they want to do the assignment, in half an hour or an hour? 

Trying to get someone with PDA to do something can feel ridiculous. With my daughter, I have reached a point of thinking, “If you’d only do this one simple task that millions of people have done in the history of human kind on the planet, everything would be so much easier.” When you’re reaching that point, you know you’re coming up to a meltdown. It is past time to back off and give everyone space. 

The problem, especially with school work, is that she does everything slowly and definitely does not meet deadlines. 

Which place is most useful?

For me, there aren’t any real places that are useful. Much of the literature recommends establishing a safe place for someone with PDA to retreat to when life becomes overwhelming, but for me that never really appealed. Being left alone until I was ready to do whatever is about the only thing that worked.

What is the hardest part about having pathological demand avoidance and how do you move past that?

The hardest part of PDA is knowing that you’ve disappointed people with your inability to achieve simple tasks and requirements. I carry a lot of shame because of it. I have a lot of intrusive anxiety provoking memories. By now, I have one for almost every situation I find myself in, which is hard because no matter what I’m doing, I can trigger an anxiety provoking memory to disrupt my thinking and emotional state. If I’m focused on doing something, it isn’t as bad. When I’m doing tasks that don’t take as much focus or that aren’t as distracting, then I can be flooded with anxiety for no apparent reason.

What advice do you have for people with pathological demand avoidance in their lives too?

Seek routine. Develop healthy self-talk so you’re not blaming yourself for all of your failures to achieve, which there will be many over your lifetime. Understand what triggers absolute refusal and try to get those in your life to avoid triggering you. 

What advice do you have for people in general when in the company of an individual with pathological demand avoidance?

Avoid making demands. Offer choices. Understand that somethings are just going to be impossible for that person to do and figure out a way that they aren’t hurt too badly by them. 

Lastly, what has your pathological demand avoidance diagnosis taught you that you never knew before? 

People are not lazy. People who aren’t performing to expectations or meeting expectations aren’t doing it because they don’t want to but because they can’t. No one sets out to fail. When failure happens, it is because there are other forces at work besides being lazy. Everyone is motivated to do something and everyone achieves something with that motivation. 

Jack hopes to run a marathon before August (“but #COVID19 and my PDA are making that difficult”). You can read more of his thoughts at his website, The Psy of Life, or chat with him using the comment box below. 

More interviews about human conditions here.

Other interviews with Jack:
How I Moved To A Different Country During A Pandemic
COVID-19 Diaries: The Situation In Guangzhou, 83 Days In
Q: What Do You Plan To Do In 2021? 

Photograph copyright: Public domain. Interviewer: Sy
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