Editor’s note: After publication, information about how the label, Pathological Demand Avoidance, is being used in ways that harm autistic people and especially children, was brought to our attention. We are working to revise this article to reflect that information. The information can be summarized as follows: While demand avoidance is a consequence of neurodivergence for many people, it is a rational response to neurological disability and not a pathological behavioral issue.
I know the look. The look that says, “Oh gawd, you’re one of those permissive parents…” It’s the look insinuating you’re raising the next Veruca Salt. That look demanding you get that child under control. The one aghast anyone would let their child get away with that. It’s a look that slaps you with judgement cold and harsh; you’ve come up short.
I can picture that look on my brother’s face. No allowances for the severely jet-lagged 3-year old or her parents who just flew half-way around the world to celebrate his wedding. No patience, understanding, or support. Just pure, unadulterated horror at my child’s behaviour and our resigned attempts to redirect her spiraling rage.
Back then, we had no idea what we were dealing with. We knew we had a spirited child who never stopped moving, rarely slept, was uninterested in toys, and raged to frighten the devil. It was many years before the word “autism” echoed through our home and newsfeeds.
Floundering new parent attempts to solve one problem only opened a door to a host of new ones. Our laments were met with alternating responses of “Oh, you’re just overreacting, all kids do that!” and blame, blame, blame, blame. Clearly, we were doing everything wrong.
When she was having a good day, it was a very good day, but when it was a bad day, her moods were wicked. Never intentionally wicked, that much was clear to us; but the intensity with which she resisted doing anything, even that which she wanted to do, was endlessly baffling.
Child care professionals, child health nurses, doctors, people with many children– no one could make sense of why this perfectly joyful and exuberant child would suddenly fly into a blind rage and flatly refuse to cooperate under any circumstances.
I worked out a formula for what was necessary to limit the likelihood of an explosion: adequate sleep, plus advance planning, sufficient food, and something that would allow her to shut out the world could get us over the line. If I ran myself ragged aligning the stars, we might make it through a public experience before the screaming started. It was never a matter of if, only when.
One by one, the children around us, the ones with whom she connected, started receiving their autism diagnoses. I read more about it, wondering if that might explain our situation, but she didn’t fit the profile.
She was talking at 2, was engaging and interactive with many people. I couldn’t find a pattern. Then I stumbled across a website detailing the hallmarks of Pathological Demand Avoidance and was hit by a flood of recognition.
The pattern was suddenly so clear. All the disparate fragments aligned into a pattern I could never quite articulate. My charming daughter was finally revealed to me in her entirety, and I wept.
The thing that was so confounding about her behaviour was the wide range of social strategies used to avoid a demand. It is worth clarifying here that “demand” is a very broad descriptor, including internal (e.g. elimination, hunger, tiredness), personal (e.g. wanting to complete two different activities), and external (e.g. a direct or indirect request). 
This is baffling to observe and challenging to describe. It’s hard to imagine actively working against doing something you actually want to do. The wild array of avoidance strategies just compounds any efforts to find a pattern. An avoidance scene might start with distraction, morph into resistance, then finally erupt into rage.
The same demand on another day might bring an entirely different avoidance evolution, although if mishandled, almost always ending apoplectically.
For years, I let others disparage me and became convinced her behaviour was all my fault. I absorbed the notion that I was inadequate, despite my relentless efforts to be fair, firm, and responsive. I don’t know if I ever would have been freed from the prison of self-deprecation were it not for my second child. She’s now 3 and proves to me every day that I’m a decent mother.
When she has a tantrum, we can respond the way the parenting books advise and she gets over it. She calms herself down and apologises for anything nasty she did when she was out of control. We have a cuddle and all is right with the world. She’s stubborn and headstrong, but she can be convinced to be helpful and cooperative without the world screeching to a halt.
As a tired parent juggling the demands of multiple jobs, household, and two very different children, it is admittedly difficult, if not downright impossible, to think on my feet and constantly modify my response to the shifting sands of my daughter’s demand avoidance.
Sometimes I need compliance so we can get out the door, sometimes I need silence to manage my own sensory issues and avoid melting down myself, sometimes I need control because everything feels like it’s spiraling away. But I’m trying to learn to balance our apparently-conflicting needs by shifting the focus to our shared needs.
My oldest daughter is not a selfish, self-absorbed brat. She is not naughty. She is thoughtful, deeply insightful, curious, and articulate. She carries the weight of the world on her shoulders. She is riddled with anxiety. She needs to feel control in the external world because everything feels so out of control inside.
She is an amazing person.
So, don’t give me that look. Don’t judge me before you’ve walked a mile in my shoes. No one is a perfect parent, but I’m the most perfect parent for her. I’m listening, feeling, and holding her hand through this minefield she’s navigating.
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19 Responses
Aspienblue- This was a great article in so many ways! My ASD diagnosis was just last February of 2018 age 59. I feel deeply for you and your daughters – For the unnecessary add stress of “public opinion” that complicates all of our lives. That feeling of being so confused and alone. That brilliant spark of realization and understanding when we find that elusive key to our selves and those we love. Thank you for sharing the gifts of your hard earned lessons. It is sharing these gifts that will set us all free from the dark and unnecessary challenges of our lives. Best wishes to you all!
Thank you very much for your kind words. I hope your ASD awakening has been as enlightening and rewarding as my own.
Blue:
“The thing that was so confounding about her behaviour was the wide range of social strategies used to avoid a demand. It is worth clarifying here that “demand” is a very broad descriptor, including internal (e.g. elimination, hunger, tiredness), personal (e.g. wanting to complete two different activities), and external (e.g. a direct or indirect request).”
Yes, this is the first and most important thing to understand.
And very often these demands clash directly with one another and demands in another category.
“This is baffling to observe and challenging to describe. It’s hard to imagine actively working against doing something you actually want to do. The wild array of avoidance strategies just compounds any efforts to find a pattern. An avoidance scene might start with distraction, morph into resistance, then finally erupt into rage.”
The late Donna Williams pointed to this a lot with her concept of exposure anxiety. Doing as self; for self; by self was often really tough.
Also avoidant coping – as opposed to problem-focused coping – is another lens of understanding.
And it’s possible to want something so much you are overwhelmed by the want – the difference is often in extreme circumstances versus “ordinary” circumstances.
“When she has a tantrum, we can respond the way the parenting books advise and she gets over it. She calms herself down and apologises for anything nasty she did when she was out of control. We have a cuddle and all is right with the world. She’s stubborn and headstrong, but she can be convinced to be helpful and cooperative without the world screeching to a halt.”
I’m glad your daughter’s tantrums work the way the parenting books say to. And the convincing to be helpful and co-operative. Hopefully she doesn’t perceive helpfulness and co-operativeness to be a demand.
I understand Pathological Demand Avoidance to be the socio-emotional version of an allergy or sensitivity, say, to gluten. Like the gluten allergy, it could be life-threatening to her if she does comply; and life-threatening again if she doesn’t.
My oldest daughter is not a selfish, self-absorbed brat. She is not naughty. She is thoughtful, deeply insightful, curious, and articulate. She carries the weight of the world on her shoulders. She is riddled with anxiety. She needs to feel control in the external world because everything feels so out of control inside.
Like Jane Sherwin’s daughter in the book “My child is not naughty”. And, yes, that insight, curiosity, articulacy and deep thought. When you said “She carries the weight of the world on her shoulders” …
Reaffirming that I am amazed by your daughter and she is amazing.
{{{{and so are you}}}}!!!
Thank you, I appreciate the additional understanding you bring to this. It was not intended as an exhaustive explanatory piece on PDA, that is forthcoming from another author. Stay tuned! I think it was slightly unclear that the daughter who recovers easily and “normally” is my younger, ND child. She is the counterpoint that helps me discriminate between what behaviours I can attribute to PDA and those for which I have to assume parental responsibility.
Correction, I intended to say “younger, NT child.” Sorry for any confusion.
Was hoping for more in the way of suggestions and strategies.
I completely understand that desire. I wish I had something to offer, but it’s impossible to provide a map for others when you’re still lost in the labyrinth. There will be more informative articles forthcoming from others with more extensive knowledge on the subject. Stay tuned!
This article is exactly my story! I’d say strategies are humour love and patience.
Humour love and patience. I’d love to write a handbook!
“No one is a perfect parent, but I’m the most perfect parent for her.”
Darn right you are! No matter others’ judgments, you’re doing your best to help and empathize with your child. That speaks volumes about your parenting skills.
Thank you, I have to remind myself of this every day. I’m an extremely self-critical person, so it was the hardest possible sentence for me to write.
Well, in case it helps: My dad is an incredibly amazing parent who is almost universally loved by everyone. (Strangers, animals, and family members alike adore him.) He is kind, thoughtful, respectful, and insightful. He is a huge reason why I am doing so well today.
When I see other parents, I can tell they are not as good at parenting as my dad. I was born to the best one. How could others compare?
But when I read your article, I thought “that sounds like a good parent.” And I should know what I’m talking about. You are similar to my dad, and that is a sign of VERY high quality parenting.
(And if you make mistakes, that doesn’t disprove it. Dad made mistakes too. Once he got so frustrated over a mess, he broke a mop. We didn’t see it, but he felt pretty bad anyway.)
Sounds like our dads are very similar. I am definitely not so universally liked, but aspire to all those traits.
I may not know you well, having only read a blog post, but I think you have at least some of them. Probably plenty. You’re a good parent.
My son, 16, was the same. Nothing improved until we a) let go of outcomes and b) allowed choice. We still have rules (not many) and also found out that he also has bipolar. New meds have helped, and so has maturity. Great article…. we went through a lot of criticism.
Thank you and I’m glad you were able to find improvements. We too have let go of a lot of expectations & allow as much choice as practicable. My daughter is very rules-based, so it helps her in some ways if there are no choices about certain things, just very regimented routines. It was hard to implement those, but she is generally much calmer in highly structured environments (so long as her sensory/social challenges aren’t also being tested).
THANK YOU SO MUCH FOR THIS. My son is 4, ASD and totally meets this profile. It baffles us when he wants to do something one minute, and then the next will refuse with screaming, hitting and crying. I always feel helpless and like a shitty parent.
Thank you! This so eloquently described how my daughter is! I believe she is on the spectrum, but a year and a half after seeking evaluation we are still waiting (we were on the waiting list for a company that lost funding and closed after we had been waiting 8 months…). Our hardest struggles are these PDA symptoms, and her counselor said she was probably ODD… I have had my struggles as a parent, but school has been a nightmare. I have such a hard time because people rarely can see the struggles as anything more than parenting issues, or they only see her sweet side and can’t accept that we have had any issues and we’re just too hard on her and she’s retaliating…. and our four year old son has been like your three year old. The things that are supposed to work do. My daughter is amazing too, and she has an amazing heart, wants to help animals, and would never want to hurt others. She also carries the world on her shoulders. Yes, we aren’t alone!
This is such an amazing article. Totally mirrors my experience. Thank you so much for writing it.