Navigating Pathological Demand Avoidance in Autism: A Personal Journey
Strategies for Understanding and Managing PDA in Autistic Individuals
The topic I have spent the most time on recently is Pathological Demand Avoidance (PDA). PDA appears to exist alongside autism and is definitely found under the broad autism umbrella or Autism Spectrum Disorder (ASD), which makes it an excellent candidate for people attempting to identify and build their own autism profile.
PDA is a subset of autism spectrum disorder that is recognized mostly in England. It is a form of anxiety that presents as demand avoidance or an increase in anxiety when the individual consciously or subconsciously perceives a demand. My interest in PDA extends from my desire to offer Commander, my younger child, a higher degree of understanding and help and to find ways in which we can, as a family, better communicate with Commander and help him continue to grow and develop.
For example, since my experiences and diagnosis are the primary factors in writing this Substack and in my attempts to understand autism and explain the condition, disorder, and comorbid conditions in easier-to-understand and relatable ways, let’s begin with a simple profile for me.
Profile:
Personal Information —
Name: John Hattaway
Sex: Male, identifies as male
Birthday: [redacted]
Parents: [redacted]
Marital Status —
Married: yes
Spouse: Erin
Children: 2, Camper (14) and Commander (5)
General Overview —
Current Occupation: Stay-at-home parent
Notes on Occupation: John has worked most of his life, from delivering newspapers to building fences to working in various aspects of IT and technical writing. He has spent time teaching English classes at the college and high school levels. John’s primary problem with work seems to be either a lack of continued interest in any given job or being laid off when the company needs to reduce employee overhead.
The decision to keep John at home is practical, as he and Erin decided they didn’t want to put their children in daycare. Since Commander is also autistic, John’s role is both caregiver and educator, and he has remained the stay-at-home parent out of an abundance of caution in helping Commander grow and develop.
Diagnostic Information —
🟩 Neurotypical (NT) or ❎ Neurodiverse (ND):
If ND:
Autism Diagnosis: Yes — Level 1
ADHD Diagnosis: Yes — Severe
Depression: Yes — Severe
Anxiety: Yes — But untreated through pharmacology
IBS: Yes — Currently in remission
Areas of Interest —
Current Areas of Interest:
John likes to read and study new material. He has been interested in writing almost his entire life and went to college and received a master’s degree in fine arts in creative writing. He has not published anything in years due to some negative experiences soon after being awarded an MFA, though John now seems to be back to writing and submitting his writing more frequently.
One of John’s current interests is reading about autism as it applies to his youngest son, Commander. These readings serve two purposes: first, to allow John to assess the pediatric literature on autism spectrum disorder and related content for possible application with Commander; and second, to find the pediatric autism truths that aren’t being carried over into adult autism-related practices and care.
Most current or dominant area of interest —
Current ASD Area of Interest or Diagnosis Being Studied and Potentially Sought: Pathological Demand Avoidance, working with PDA in a classroom setting, language models for use with individuals who show signs of PDA (of which Commander is most likely affected).
Notes on treatment or future areas to work on —
Treatment or Other Forms of Intervention:
John takes depression medication every day and has committed to this level of pharmacological assistance. He has seen therapists in the past and, while not currently seeing a therapist, doesn’t rule out needing to continue therapy in the future.
End Current Profile.
This is by no means a complete profile, but a lot of relevant and pertinent information is included such that someone with an understanding of autism spectrum disorder can begin to see and formulate some ideas on how I might be best served in terms of treatment, quality of life, future planning, and so on.
The objective here isn’t to have a form with fill-in-the-blank answers, but rather to have a document or documents that help flesh out the individual nature of my (or anyone else’s) autistic profile to better understand what may or may not work in providing assistance and treatment.
While I’m not going to go into a lot of detail about my thoughts on “functioning” vs “independence,” with the latter being a better description of individual autistic needs in relation to therapy and in being as independent as possible, I will say that the reason PDA is important is that once the PDA profile is included, the seemingly obvious realms of managing autism become less clear. Why? The answer is that any demand, perceived or real, made on an individual with a PDA profile will be met with one or all of three responses: fight, flight, or freeze.
In this context, not too long ago, I witnessed an interaction between Camper and Commander. I had asked Camper to make Commander some food. Camper proceeded to tease Commander and then proceeded to prepare the food. When Camper returned to where Commander was playing and began to tease some more, inserting chaos into an otherwise chaos-free environment (I will write more on this in the future), Commander punched Camper and then took off running before he dove under a table and curled up in a ball and froze.
The interaction between Camper and Commander is one that illustrates, a little too well, the role PDA can and does play in normal, day-to-day, interactions.
Notice what happened: a demand was placed on Commander in the form of teasing and pushback on the kind of food being prepared. In response, Commander felt he needed to respond, and because Camper was the object of the chaos, Camper was punched. Commander, probably realizing that hitting is bad and having hit Camper was really bad, took off running or fleeing to avoid the next demands: a cooldown period and being encouraged to apologize to Camper; finally, when I re-entered the events and went to find Commander, he was under the dining room table refusing to speak to me, acknowledging what had happened, and referring to himself negatively.
All of these things, from inserting chaos (yes, this really is a thing) to not hitting and depending on the severity of an action having a timeout to having a breather to having consequences up to and including losing device access and screen access, are things we’ve worked on most of his life.
There need to be safe spaces to make mistakes and a willingness to reschedule and plan around the tougher patches in Commander’s life, but that’s part of the plan to help him grow and develop into an individual with as few dependencies as possible, or to state it another way: we want Ollie to be as independent and successful as possible given his autism diagnosis, his intelligence, and his other abilities.
For Commander, like me, the autistic profile is an important tool for my family, other caregivers, therapists, and teachers, and for educational purposes to best serve Commander’s needs. Of which, recognizing Pathological Demand Avoidance is one important part. Especially as he and I begin a homeschooling (or according to where we live: a home education) journey.
As with most subjects, I will come back to this with more specifically about PDA, expanding personal autism profiles, and finding the right people and resources to help people with autism get better treatment, succeed in therapy, and to understand their own needs.
The role PDA plays in life, mine or Commander or anyone else, can be used as part of a personal profile. This profile will help in determining next steps. In the case of Commander, including PDA has led to research into educational and therapeutic practices that will better enable him to adjust to the real world demands as he gets older.
Going forward, I hope to proactively begin using this information to help Commander adjust to new schedules, accept unexpected or sudden changes in our day, and to allow him more room to develop and grow. Through this, I believe Commander’s experience, as well as my own, will lead to a more successful and better understood interaction with the NT world.