Pathological Demand Avoidance (PDA) Parenting: Taking You on a Guilt Trip5 min read

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). horse

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.

 

Latest posts by AspienBlue (see all)

18 Comments

  1. 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!

    1. Author

      Thank you very much for your kind words. I hope your ASD awak­ening has been as enlight­ening and rewarding as my own.

  2. 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}}}}!!!

    1. Author

      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.

      1. Author

        Correction, I intended to say “younger, NT child.” Sorry for any con­fu­sion.

  3. Was hoping for more in the way of sug­ges­tions and strate­gies.

    1. Author

      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!

      1. This article is exactly my story! I’d say strate­gies are humour love and patience.

    2. Humour love and patience. I’d love to write a hand­book!

  4. “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.

    1. Author

      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.

      1. 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.)

        1. Author

          Sounds like our dads are very sim­ilar. I am def­i­nitely not so uni­ver­sally liked, but aspire to all those traits.

          1. 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.

  5. 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.

    1. Author

      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).

  6. 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.

  7. 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!

Talk to us... what are you thinking?