To Ask and To Demand

I’ve been reading a little this morning about Pathological Demand Avoidance Syndrome. First described by child development psychologist Elizabeth Newson, PDA is a pathology on the autism spectrum characterized, as its name suggests, by avoidance of the normal demands of everyday life: things like getting dressed, going to school, eating one’s cereal, and so forth. It’s not procrastination: the avoidance is not of the task but of the demand, which is met not just with anxious defiance but with all sorts of socially manipulative behaviors (some of them charming) as well as violent outbursts.

I suspect that this diagnosis and its treatment will have lots to teach me about what I’ve been calling — not without misgivings — the power of asking. I’m also hoping that Newson’s work and other research on PDA will shed some light on the question Marc Tognotti put to me in an email after I posted my notes on Austin and Asking: namely, whether we can talk coherently about demands as a kind of asking. I’ve been satisfied with making rough equivalences between the terms, and in an earlier post I’ve even managed to cheat the idea of moral claims into the word “demand.”

Marc countered that he was surprised that I included demands in a discussion of asking and that there is a difference between demands and requests (or asking someone to) that’s probably worth maintaining. In short, to talk about demands and asking in the same breath confuses things, he says, because demands are more akin to commands or coercion than requests.

I admit there’s a lot here to sort out, including questions about the kinds of authority, moral or otherwise, we need to make commands, demands and requests. For the time being, I’m taking refuge in the etymological roots of our English word “demand” in the French demander, and I’ve also found some shelter in the Oxford English Dictionary, which lists “to demand” among the definitions of ask. But none of that will do for very long. It might be nothing more than an avoidance strategy.

Still, I think it’s clear that the verb ask can be used exercitively — to exercise power, and that using the verb ask in that way can be (let me put it this way for now) pretty much like making a demand: “I ask that you take your hands off me.” “I ask you to respect my rights.” “I ask you to come forward, so that you can see this for yourselves.” Maybe those examples are a little clunky and formal, and I admit that the last one can be construed as invitation rather than a demand. More importantly, I don’t want to limit the “power” that I am talking about here to the making of demands or even the kind of asking that is pretty much like a demand. Ultimately, I am more interested in the way that asking — or serious conversations about what to do — can give people an equal share in power.

I still have a lot more reading to do before I can tie all this back to PDA, but I’ve managed to grasp the basics. People with PDA experience demands as a complete loss of control: powerlessness. They feel coerced, not asked to or whether they would. Even the most trifling demand seems to eclipse their will. In this diagnosis, demands are more like commands, less like asking or the start of a conversation about what to do. Even the simplest request or suggestion can be mistaken for an order and resisted.

One parent of a child with PDA reports that her child misinterprets “everything as a demand” being shouted at her; and to overcome the child’s pathological demand avoidance she and her husband “always try to phrase demands in a way that offers…choices and we are always prepared to negotiate.” Many boundaries too, have to be negotiated, even when it’s a question of what’s safe or lawful, so that the child “feels that it is either her choice or is open to negotiation.”

Of course it’s deceptive, a manipulation to give the illusion of control and preempt the child’s manipulations. It’s not a serious conversation; it’s power play: the parents engage the child in mimicking the very real power we share when we have choices to make, nobody is in charge and nothing is settled. And that is what these children seem to want, but only because that gives them a chance to take back control.

Postscript: some readers have found my last paragraph controversial or just wrongheaded. Please take a moment to read the comments on this post from parents of children diagnosed with PDA.

26 thoughts on “To Ask and To Demand

  1. janesherwin

    PDA is an extremely complex condition that involves far more than simply the ability, or not in this case, to comply with demands. Individuals with PDA have very real difficulties and misunderstandings with social communication, interaction, sensory issues, obsessions and routines hence why PDA was proposed by Proff E Newson to be identified as a separate but definable sub group within the family of ‘Pervasive Developmental Disorders’ (PDD) Newson et al (2003). Since the publication of this paper terminology has changed and the term PDD has become synonymous with the term (ASD/C). The importance of this is that PDA is now seen as one of or part of the Autism Spectrum Conditions (P Christie 2014). The individual with PDA does not only avoid demands or requests made to them by others but also have great difficulty in complying with things that they genuinely want to do like playing a fun game or going out for the day even if they can choose where the outing will be. They also, much to their own frustration, have huge difficulty with complying with their own demands e.g. my daughter may desperately want to have a shower but simply cannot comply with what her brain is telling her to do. Demands, to the individual with PDA, are far more far reaching than one would initially imagine and go far beyond avoiding direct demands e.g. going to bed or doing homework and so on. My daughter misinterprets the spoken word and this causes high anxiety due to the fact that PDA is an ASC. Is it this misinterpretation of the social world around her that causes such high anxiety and confusion that then causes her to make sense of the world and to reduce anxiety by being in control of a world that is confusing and unpredictable? Mollie describes her need to avoid demands as being instinctive and not a conscious decision. I don’t think that my parenting is either manipulative or giving the illusion of control. It is simply a style of parenting that I have had to adopt in order to help my daughter remain calm, reduce meltdowns and to give her the licence to feel that she does have choice, which she does. She has full control over her own life and the benefits for her and us as a family have being massive. We only use certain strategies not in an attempt to manipulate her or to give her the illusion of control but to simply allow her to achieve the maximum that she can, while being in full control and without judgment or control being excerpted by us. If she wants to go to the pictures I allow her to choose and to have full control so that she can achieve this of her own free will, not so that I can manipulate her into going by pretending that she is in control. I fear that you may have misunderstood my strategies but I am never the less grateful that you are investigating and blogging about this most complex condition.

    Reply
    1. lvgaldieri Post author

      Hi Jane,
      Thanks so much for reading my post and for your thoughtful reply. I guess the word “manipulation” has more bite than I intended; I can only imagine the challenges you are meeting and I did not mean to be critical. I guess I came closer to the mark when I said that this was a form of “play.” (And it’s the playing with power that interests me; the struggle for control — is that fair? — is resolved by playing at negotiation.) I am also very interested in what you are saying here about “licence”: it opens up a different set of considerations. PDA obviously has a lot to teach us about the way people work.

      Reply
      1. janesherwin

        As adults and parents we feel that we should be in control, have charge and to expect our children to do what we say but not necessarily as we do. My child does not see this pecking order in society, she sees herself as equal and therefore wants and expects the same rights as she sees the adults around her take for granted. This ambiguity is part and parcel of the pda profile. Once I understood the world through my daughters eyes I gave her licence to be the same as me, i.e. in control of her own life. Me giving her licence wasn’t a gift that I bestowed on her but was an acknowledgment and an acceptance of her vision of the world and how she needed to be treated and in control of her own life if that makes sense. To be honest I agree with her, as adults we all loose our temper, speak our minds, swear, have off days and days when our tempers are fraught yet we expect our kids to never display these behaviour and may punish them when they do. If you are a child learning from adults this may be very confusing indeed. I feel that your blog is very interesting but is more about semantics and terminology rather than the true issues that are behind the PDA profile of behaviours. Their brains are wired very differently to yours and mine and that is why they have such an adverse reaction to the world around them which may, to the casual observer, simply seem like an aversion to follow demands or figures of authority. The truth is that they are deeply confused and perplexed by normal social interactions, pecking orders and so on. They struggle on by mimicking what they perceive to be correct behaviours, in absolute ignorance that taking on the persona of a teacher may not be advantageous. They become more and more confused with the world in general and their inability to fit in until may of them become complete recluses unable to even to step outside their own front door. This is truly heart breaking for any parent and this is why we use the strategies that we do, in order to help our child achieve and to feel able to dip their toes into the outside world, hope that this makes sense x

      2. lvgaldieri Post author

        You are entirely correct that I am not trying to write anything authoritative about PDA. I’m trying to learn a little about the condition to help illustrate some questions I have about language and power. And so far it turns out to be very illuminating. Your description of “licence” as “an acknowledgment and an acceptance of her vision of the world and how she needed to be treated and in control of her own life” especially interests me: that’s about respect for her as an autonomous person. Obviously there’s lots to learn.

      3. janesherwin

        You seem very open minded and I do hope that you are able to learn lots about this subject. Moll is now radically unschooled and totally lives and autonomous lifestyle within he realms of the law, which she ironically accepts without question. Written words and laws seem to be far more readily accepted than verbal communication. Many kids with pda find verbal communication very threatening and frightening hence why they can often communicate better through a soft toy or through the written word, social media and so on. In this instance they are not misinterpreting or getting anxious over verbal tones that they may find threatening due to misinterpretation x

  2. Marc T

    Imagine that someone says to you: “I ask you to take your hands off me.”
    Now imagine that same someone instead says: “Take your hands off me.”
    Do you perceive any difference?

    Reply
    1. lvgaldieri Post author

      I know you want me to say there’s no difference, but I can’t quite say that. Mood and syntax matter: the latter expression is a very explicit imperative, while the former sets up another kind of relation between the two interlocutors, doesn’t it? Or at least “I ask you to” leaves some wiggle room that the imperative does not.

      Reply
      1. janesherwin

        both of these options as explained by Marc are demands to the individual with PDA. Asking nicely does not make any difference. The speaker is making a suggestion or a command which ever way you look at it and the individual with pda will be compelled to avoid. Even answering a question like “Is your film good, are you enjoying it ” will be perceived as a demand by my daughter because a question is a demand that responds an answer. She is much better now but in the past such an innocent remark or question could have resulted in a full on meltdown lasting for hours, where everything in the house would have being trashed. I am not trying to be negative or argumentative but to simply try to emphasise how deeply complex this condition is, I hope that you can understand this and don’t take my comments as confrontational.

      2. janesherwin

        You need to read my book 😉 this will give you a wealth of inside knowledge into this complex condition and how it affects families x

      3. janesherwin

        wow, I didn’t expect that I must be honest. I hope that it helps to explain the condition a bit more and to offer further insight for you as you investigate this topic. I must say it is very nice for someone who isn’t directly affected by PDA, which I am assuming, although I could be inaccurate in my assumption, that your not. Thank you for your interest and open mindedness, it is much appreciated and a very rare quality that I seldom find xx

  3. JOHN

    Hi, it is great that you mention and are looking into PDA but please don’t fall into the trap of judging this condition by questioning the ligitimasy of the words in PDAs title.
    PDA is very real and very disabilitating.
    I have had years of my child being removed from schools, losing complete control and destroying sections of the house and worst of all, crying how it is not fair to not be normal like the rest of the kids.
    Please do continue to investigate PDA but please do not fall into the trap of dismissing it due to the exact meaning of the condition matching your dicrionary……our familly has the scares to dismiss any lingual issue.

    Reply
    1. lvgaldieri Post author

      John, I am not trying to be dismissive at all. I confess that when I first read about PDA I wondered (and I understand I am not the only person who has wondered this) whether this wasn’t just over-diagnosis. But even after having done a little reading I am beginning to appreciate just how complex and serious the whole thing is. I hope to do more reading, and I really appreciate your taking the time to encourage me.

      Reply
  4. Kate Sillitoe

    I find your original post interesting, but is surely a discussion on semantics rather than the condition Patological Demand Avoidance. In connection with your last question, does one perceive a difference? I would say that I certainly can perceive a difference in the two requests, however, a person with PDA won’t. If you were to ask the question, ‘would you like fish or chicken for dinner?’ if asked to a person with PDA who is already feeling anxious this question might also be perceived by them as a demand, i.e the demand for a response, or for a decision to be made. It is their perception of the expectation to do something else on top of their already overly anxious state that causes them to respond negatively. Therefore the way that the request is phrased is crucial in helping them to avoid over-taxing their already anxious state of mind.

    Reply
    1. lvgaldieri Post author

      Kate, Semantics is one way to describe my interest in the word “ask,” which I’ve been trying to make sense of for some time now. What you say about the fish or chicken dinner question confirms what I’ve read on PDA parenting blogs. So I guess what we might call politeness doesn’t really count?

      Reply
      1. Kate Sillitoe

        Not sure what you mean by the last statement re: politeness. However, as an Autism Spectrum Condition it is certainly true that people with PDA often struggle to understand normal social rules, which may also include politeness.
        I found your post on anxiety interesting also, particularly when you say that anxiety, “could be an opportunity to acknowledge our own powerlessness, a reminder that the person we refer to with the first person pronoun, I, is not always able to set the course, or stick to the course we’ve set. This is something we all know, somewhere deep down inside, and some of our anxiety surely stems from this knowledge of our plain human frailty, which we try through various ruses to keep hidden from ourselves.”
        The anxiety that a person with PDA feels may well be due to them not being able to set the course, or stick to one set for them, which then emphasises their own vulnerability and fears. This fear can then develop into an overwhelming state of shear panic resulting in a panic attack, or a fight or flight situation. When this panic attack occurs when they are asked to do something, which to most minds would not be considered to be a demand. Or alternatively when the ‘demand’ is one that they really want to do, then it might be considered to be a pathological condition, which requires a great deal of empathy and understanding.

  5. M Allen

    Thank you for sharing your interest in PDA … My children are mostly grown up and high achievers who I take pride in so I would guess my parenting has been to a pretty good standard. We have all watched our youngest child suffer with his condition. He doesn’t want to be how he is and has asked when he was younger why he is so stupid or what is wrong with him or why isn’t he normal… He is also an intelligent lovely witty little boy… A ‘demand’ to him can include someone saying something as simple as hello.. Demand doesn’t necessarily mean a direct order… Hello usually means one would say hello back… That is now an unwritten demand and one reason why PDA is such a difficult condition to live with for all concerned…thank you again for your interest in such a debilitating, misunderstood and misdiagnosed (usually from ignorance of it) condition

    Reply
    1. lvgaldieri Post author

      M Allen – I appreciate your comment, and I am really impressed by the PDA parenting community. You guys are clearly on top of this subject. I am just starting to learn about it.

      Reply
  6. Kate Sillitoe

    We are pleased to see your interest, it is a very poorly understood condition, which warrants further investigation, but please do not underestimate how incredibly difficult a condition it is, for both the carer/s and the person with it.
    Please ask questions about and we will attempt to answer them.
    Can we also ask you a question? What is your specific interest in PDA?

    Reply
    1. lvgaldieri Post author

      I thought that learning about the condition might shed light on the conversational strategies I’m interested in, where people don’t give orders or try to coerce but instead try to open up a space of dialogue and (to use Jane Sherwin’s word) “negotiation.” That’s long winded, I know. I am sure I will have lots of questions as I read more about Newson’s work, and maybe I’ll even be able to be more articulate about why the subject interests and attracts me.

      Reply
  7. Alison

    My son suffers with what I can only describe as debilitating anxiety. We now use the explosive child technique when parenting our four children. We like to think that although we have the diagnosis of pda what counts his what skills out son his lacking and how them skills cause day to day difficulties this his how we problem solve his daily living. We know one of his problems his he percieved everyday living as a demand so we have to provide him with skills that allow him to cope within society

    Reply
    1. lvgaldieri Post author

      Alison – what you say about your son resonates with what other parents here say. It’s good there are online resources and, from what I can tell, a pretty strong and supportive PDA parenting community.

      Reply
  8. Colleen

    Hi Ivan,
    I think your interest about how we define asking is at the very core of PDA. It’s what a lot of people trying to help our children fail to understand.
    Demands are everywhere. In everything and in multiple layers.
    Politeness does help my son a little. It doesn’t change the demand (the act that’s expected) but it changes the way the demand is perceived (the power balance; the option of no or moderation) so that there is wiggle room. There is that space where each party is respected and has autonomy over their input.

    Using indirect language, making suggestions, allowing time and space to take up the message etc etc are strategies used for my son. It is a form of manipulation, I guess, in that my focus is on gaining his compliance and agreement. But when your child refuses to engage in any and all that is asked/demanded/expected of them, you tend to run out of options as you try to meet your parental responsibilities (say basic hygiene or school attendance) whilst preserving your child’s self-esteem and mental health. I like the term ‘manoeuvre’ in favour of manipulation…but that’s just semantics too. 😉

    Reply
    1. lvgaldieri Post author

      “That space where each party is respected and has autonomy”: wow, Colleen, this is a really telling comment and it confirms for me that PDA has lots to teach us about things most of us take for granted: doing things together, having conversations, collaborating, etc. Thanks for reading my post and for your comment.

      Reply

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