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You’re trying to get everyone out the door, to work and to school. Susie won’t budge and is visibly distressed. It’s happening again. As you’re becoming sterner with her, she’s becoming out of control. You’re frustrated. This happens every day. What’s going on?

Parents facing such a scenario may seek professional help for their child, and themselves. The counsellor or doctor will likely listen to the description of events and ask many follow-up questions. At the end of it all, you may be offered a diagnosis – Pathological Demand Avoidance. Wow! What’s that? It sounds serious.

According to Autism.org.uk, “Pathological demand avoidance (PDA) is a profile that describes those whose main characteristic is to avoid everyday demands and expectations to an extreme extent.” Breaking the term apart, and referencing the Oxford English Dictionary, we see that the word pathological means “obsessive or compulsive,’ the word demand means to “ask authoritatively,” and the word avoidance means “the action of keeping away from or not doing something.” We can put the elements together to say perhaps that PDA involves an obsessive desire to keep away from something with has been requested authoritatively. When the parent in the above scenario demands that Susie join the family in leaving for the day’s events, it’s done authoritatively. There’s no choice either stated or implied.

But, that is the point of view of the parent and the system. Susie is being defiant, refusing to comply. The parent sees only the delaying, charming, shouting, distracting, negotiating, making excuses, masking, falling to the ground or explosive behaviour. What do you think Susie is going through?

Imagine feeling like every time someone places a direct or indirect demand on you, you go into fight or flight mode. No wonder PDA tantrums can be equated to panic attacks. 

Everyday demands begin early in the morning (brush your teeth, get dressed, etc.) and last all day long. Because of the nature of these unique challenges, PDA’ers often struggle with school (a demanding environment). 

I might not say it to everyone I meet, but… “I have PDA meaning I become very anxious when people ask or tell me to do things. To reduce my anxiety, I will try to take control and may use lots of different strategies to avoid doing what’s been asked. If I get cross, it often means I am in a panic. If/when that happens, I need everyone around me to stay calm.” 

When our goals for individuals with a PDA Autism profile work toward having them comply, follow orders, toe the line, behave, do things in a certain way, do what we want them to do, and do what we think is best … we are completely missing the point. We’re overlooking and dismissing the power and value of who they are supposed to be, and how we can support them to reach whichever wonderful potential in whichever wonderful ways they choose for themselves.

You see, adults with a PDA Autism profile often get labelled as “anti-authoritarian” at worst, or “not a team player at best.” Those in authority see the defiance, the rejection of demands. They don’t see the internal processes happening within the autistic system – from the autistic point of view. They apply constructs and theories that suggest that the autistic system is a disordered “normal” system, and just needs a stern talking to in order to get back on track. 

But, this is simply not the case. The autistic system works exactly as designed. It just follows a different operating system. When examined in light of Reeser’s Solitary Forager Hypothesis, through the lens of Glasser’s Choice Theory and Basic Needs, autistic behaviour makes perfect sense. We have the Basic Need to matter, make a difference, achieve, be competent, recognised, and respected (Power). We also have the Basic Need for agency, for making our own choices, and being independent and autonomous (Freedom). Freedom is about being able to move freely without restriction. Glasser’s theory notes that our Basic Needs don’t really change over time and that our attempts to satisfy them happen unconsciously.

So what can parents do to help their little Solitary Foragers “move along with the program?” The strategies set out below can be found in the literature around PDA supports and generally go by the acronym PANDA.

  • Pick Your Battles – Minimize rules. Enable choice & control. Explain reasons. Accept some things can’t / won’t be done. 
  • Anxiety Management – Reduce uncertainty. Recognize underlying anxiety/reasons. Treat meltdowns as panic attacks (always). 
  • Negotiation & Collaboration – Keep calm. Collaborate and negotiate to solve challenges. Fairness and trust are central. 
  • Disguise & Manage Demands – Word and position request indirectly. Constantly monitor and match tolerance for demands. Doing things together helps. 
  • Adaptation -Try humour, distraction, novelty, and role play. Be flexible. Have a plan B. Allow plenty of time. 

In practical terms, what can parents/caregivers do? 

  • Think ahead, and anticipate triggers and strategies.
  • Give kids advance notice (this provides control & processing time).
  • Monitor the child’s stress levels & scale back demands as needed.
  • Create a safe space for your child to process the requests. 
  • Keep Calm, be the example. 

What about “Adulting” with PDA? 

  • Recognizing demands, avoidance, and masking.
  • Identifying & understanding your PDA.
  • Self-acceptance.
  • Being aware of triggers.
  • Finding your tribe & maintaining relationships. 
  • Managing, reducing & disguising demands.
  • Having demand-free time and sensory regulation. 
  • Exploring different ways of working.
  • Informing others & asking for accommodations.
  • Therapy, counselling, mindfulness & meditation.

So, if you’re having battles, ease up. Look to build a collaborative relationship rather than an authoritarian one. A teaspoon of sugar, after all, helps the medicine go down …

A friendly reminder: autism is a spectrum, and every individual autistic person is unique. There is no such thing as looking autistic, so please remember to be kind whenever you see anyone behaving in a way that’s different from you. And perhaps even more importantly, teach your children and your friends to understand the beauty in our differences. Model what it looks like to be a kind and compassionate person. Let’s build a kinder future together! 

If you’d like more information about this topic, contact the professionals at Autism360 who can connect you with the appropriate resources.

About the author: Jim Hoerricks, PhD is a non-verbal autistic researcher, lecturer, presenter, best-selling author, elected official, and credentialled special education teacher who resides in a small mountain community north of Los Angeles, California.

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