Transcription
Hello, welcome to Galaxy TV. My name is Doro. I am a parenting and family coach on the topics of autism, high sensitivity, and giftedness. And today’s video, I would like to dedicate once again to the topic of PDA. PDA stands for Pathological Demand Avoidance, and it is a sub-profile of autism, and it has something to do with a very large avoidance and a very large problem with demands of any kind. And for today’s conversation, I have invited a wonderful person, Regine Götz. Ms. Regine Götz is a certified psychologist and a practicing psychotherapist. And today we want to talk about the topic of anxiety, also about the role that anxiety plays in PDA, and also very particularly, very especially about the limits that parents experience and also their own personal limits that they experience in life with PDA in the family. But first of all, a warm welcome, Regine Götz. It’s great that you’re here. Thank you very much for the invitation, dear Dorothea. I’m very happy to be here today. I’m happy too. There’s one thing I actually forgot in your introduction, Regine. We are both on the board of Fapta. Fapta is the professional association for PDA, and thus we are also colleagues and both work there voluntarily. I forgot that in the introduction. [Music] Regina, we thought a bit in advance about what we would like to cover on this topic, and I would like to ask you the first question, and that was the question: How is it that many parents initially experience PDA as refusal and defiance, and why is anxiety actually the core of PDA? Mhm. Yes, that is a very interesting question, and it is also not so easy to understand because the behavior can indeed be very, very challenging, and it is actually knowledge that one must have as a parent, that there is a deep anxiety behind it, and this anxiety, I believe, is also a societal issue, that we have actually tried to banish anxiety from our lives with insurance, with modern medicine, with technological development, and that anxiety in children’s lives is actually not as present as it used to be. Parents used to raise children with, at times, force or by instilling fear, and thankfully those times are over. But it is a huge challenge to accompany children and not to raise them from above anymore. And now, the impression could arise here that it is a weakness in parenting or in society. I do not mean that in any way. I believe that children with PDA bring a neurobiology with them, or an autistic perception, a highly sensitive perception. Actually, these are children who are highly gifted in perception, and they perceive everything. Also the movements of the parents, also topics perhaps that are at school, they are overwhelmed by the world at times, or by their feelings, when they perceive things with their microscopic perception, one could say, of moods, of feelings, and that is actually the trigger for anxiety in children, and because they perceive so much, because all of this bombards them, and because their filters are not so strong, meaning they cannot filter out as well, because they are so highly sensitive, because they feel so much, they also perceive the moods and the threats of this world very extremely. I believe that could be it. Exactly. I have no scientific evidence for this, but that is my assumption. Yes. And my experience too. Mhm. Yes. And how does that manifest in everyday life for the children? How does that anxiety, which they perceive so much, manifest itself, how does it express itself? They simply react to micro-communication or to glances or to a feeling in the parents that they perceive, that the parents themselves may not even be aware of, and then they block because they notice something is wrong. That is perhaps not entirely honest or not entirely real, what the mother is saying or feeling, perhaps anxieties in the mother. We all have so much stress in our lives today. These families are also confronted with the practical constraints of earning money to finance life with children. And at the same time, time is lacking, leisure is lacking, peace is lacking to actually allow these children space to develop, which would be so urgently needed, also for the parents to recover in between. Yes, I think you also mentioned something in our preliminary conversation that it used to be different. One worked and then saw the result of one’s work quite immediately. Yes, one harvested the fruits, one worked hard for it, but the result was there, which is a bit different today. So much plays out in the future and has a certain uncertainty, and that also appears more threatening to these children who react so sensitively to anxiety or to pressure. Even such subtle tensions of the parents, when they have to earn their bread, so to speak, but not in the field where one can see it, but they are somewhere else, have stress somehow, and come home, but the result is not immediately obvious. Did I understand that correctly? Yes. Yes, exactly. And these children live entirely in the moment, don’t they? And that is actually a characteristic that these children are fully in the moment, and when you announce something to them, they often ask, “Now?” And then you say, “No, no, that’s in 5 days, what we’re going to do.” And for them, that is not at all comprehensible, and perhaps not even apparent why they have to brush their teeth now so that there are no cavities later, or why they have to do something now that brings them no joy, just so they can read and write and calculate later, right? In school too, we always learn for the future, and because it is important, someone else says it is important, but for the child themselves, it may not be important at all at the moment. They actually want to experience the world themselves and learn at their own pace and in their own way, or is that very difficult in our time, this self-direction, this autonomy? I think that is something very PDA-specific. So, autistic children actually quite like preparation and also like to understand and accept. In general, or many, you know one autistic person, you know exactly one autistic person, right? But for many, it is such that it is very pleasant to be able to plan ahead. I don’t think it’s very different with PDA, but there is this specification that the moment is even more important, and autonomy, being autonomous in the moment, being determined in the moment, that is very, very important. I believe this description is quite accurate, and that is what makes it so difficult. On the one hand, one has to discuss many things with these children beforehand to prepare them so that they are not completely surprised. Or one also has to obtain their consent when one wants to plan something. So parents learn quite quickly that they cannot plan something over the child’s head, because otherwise the child will block. One must always obtain the child’s consent if one does not want to get into dead ends. And at the same time, it can still happen, even if one has prepared it as well as possible with the child, that in that moment the transition out of the house is not managed, or they see something else that currently interests them very much, and then they immerse themselves in it and perhaps refuse to leave the house to meet someone, because they have something more important at the moment. These are then very difficult situations, and I find it very exciting at this point to look again at what the difference is here, or how we connect anxiety with autonomy. Because we, as parents or as professionals, actually see the symptom of refusal. I do not want to fulfill a demand. And one can see the need for autonomy behind it, of course. But what role does anxiety play here? And then I would also like to look at how one can approach this from a trauma-informed pedagogical perspective. A very interesting question. Yes, I believe that it is not just autonomy, or that autonomy is one thing, but the other is also wanting to have control. And I believe that these children, the more you want to steer and guide them and don’t really want to understand them and communicate with them at eye level, or can’t, or simply because you yourself had a different upbringing where you didn’t always have to understand everything from the child and just say, “It is like this now because I said so.” The children also want to maintain control through refusal, and they sometimes control the entire family, even the siblings suffer from it, and in my experience, they let go of that the more they feel seen and understood and feel free. So the paradox is actually that the more parents learn to let go and also to endure their helplessness, that something is not possible at the moment, then one has to let go immediately and perhaps run away and not insist with the child, and then when the child notices, “Ah, Mom is letting go, and I am free,” and also if the child is not accused of doing it out of malice. Because then defiance comes, I think. But if you give the child the choice, then they feel freer and have to control less. And that is how I understand the connection between the need for autonomy. It is a need to be perceived as an equal human being. And there is no, perhaps here to insert this, this hierarchical understanding that one actually has. So I am a child, and then there might be an older brother who is perhaps hierarchically a little higher than me, and then there are the parents, there is the teacher, then there is whoever, that is a concept that these children cannot perceive. It’s not that they don’t want to, but it simply doesn’t seem logical in their thinking, their feeling. They can’t do anything with that. Thus, everyone is equal, and therefore they also want to be treated at eye level. So being told by someone, just because they are a few years older, what I should and shouldn’t do, that becomes clear to many parents even in infancy, that it is difficult. There are stories that the child does not want to be changed in this way, because it is a loss of control over their own body and a restriction in autonomy, in free determination of what is happening at this moment, and the moment is again here. And this should not be seen as malicious behavior, but as a great fear of this loss of autonomy, because it is as important as losing the air to breathe, like suddenly not being able to breathe. And I think that brings in the anxiety. Mhm. But I think it is actually the case that we as parents have to prevent certain things, for example, that the child runs into the street, or we have to somehow get them to brush their teeth, possibly brush their teeth, so that they don’t get cavities. But I think we also have to differentiate. I think the attitude from transactional analysis, although it is a somewhat dusty old concept, it comes from the 1960s and was conceived by Eric Berne, but it has helped me incredibly in working with clients, with families. There is the saying: “I’m okay, and you’re okay.” So, we assume equality of every person, regardless of age. But as a mother or as a father, I have responsibility for these children. And I believe that if we naturally return to our authority as parents, simply because, I am your mother, I am your father, then the child feels it when we are sure that we hold this role. And that is actually undermined in our society. There is so much parent-bashing, so much blaming of parents, and they can’t do anything right, can they? So, if they work 100%, the mothers, they are accused of not having time for their child. If they stay at home completely, they are accused of not being employed. So, all these demands placed on parents, also on fathers, are immense. And one can almost only develop inferiority complexes as parents. And this self-evidence that we are the mother, I think that is something very important, but not power-driven, and not hierarchy-driven, but simply by nature. We need to return to nature a bit with these children. So, you mean by that too, that these children feel the difference, whether I now simply have to clearly change diapers, teeth must be brushed, and one must not run into the street, autonomy or not, and a car could come, that is dangerous. Yes, that simply has consequences, and that we as parents have a responsibility, and we can be that, very self-confident, and also don’t have to be afraid now that we are depriving our PDA child of their freedom, and that these children, in the moment when they feel, I am doing this because it is important now, and I am convinced of it, and I have a clear line and a clear structure, that these children will accept it accordingly. That is the question. That is a bit like, on the one hand, the question, this is what I hear from you as a concept. But we also have these ideas of Panda strategies, of giving as much freedom as possible, of counter-intuitive handling of these children. Counter-intuitive in the sense of usually completely different from what we think and imagine is good now. So, to speak, if I want something, I have to apply pressure for it to happen. That would be the intuitive approach. To approach it with willpower, with strength of will. With these children, that is absolutely wrong. With these children, with PDA children, one has to approach it counter-intuitively. If I want something to be done, then I have to free myself from the thought, detach from the desire. Then it will happen, but not before. Okay, now we have come to the point where we have looked at what is behind it and what role parents might play. And Regina, you wanted to say something directly about that. Go ahead. I believe that the Panda strategies are correct and important and very helpful, but there is a danger that parents will then only do what the child wants. And I believe that is a misunderstanding of the Panda strategies. I believe that children, and this is also interesting, children notice very precisely where the parents’ real boundaries are. So, if, for example, something is financially simply not possible, it can often be the case that these children accept that boundary. So, they also know, at times, where the mother’s boundaries really lie, and they will not, well, yes, they do push further at times. I don’t believe there is no resistance when you parent like that, when you are fully present and live natural authority, but sometimes you just have to choose sometimes, is it worth a meltdown for the child, or that the child enters a difficult emotional state and very difficult behaviors because I simply have to enforce it, but we want to avoid as many difficult emotional states in the child as possible, and there we actually have to approach it counter-intuitively, namely learning to remain calm, not to shout, to let go. So, these are many skills and abilities where we parents are called upon to work on ourselves. But at the same time, I also find it very important that we do not have too high expectations of ourselves. We are all human beings, and if it happens that we become loud, then that is very human. And what I find very important, however, is that parents try to get as much relief as they possibly can, but which then does not lead to meltdowns afterward because the child has masked too much. That is also a balancing act, and it varies in every family, what resources are available for relief. But recovery, because the upbringing of a PDA child is simply extremely hard work, and it is very, very boundary-pushing, one experiences one’s limits very strongly in any case, right? I also hear from this the balancing act between demanding, supporting, and overwhelming, which requires a new attempt every day. So this “Pick Your Battles” from these Panda strategies. By the way, if anyone is not yet familiar with the Panda strategies, you can also find them, and I will perhaps announce this later, at FAPA, in our professional association, and read through them thoroughly, what that exactly means. They are very important strategies that greatly facilitate dealing with PDA children in particular. And the first P for Panda stands for Pick Your Battles. That means, think carefully whether it is worth the meltdown, which you just mentioned, Regine. Yes, so this would then be a moment where one considers, do I have to trust the child in that moment and also demand that it trains its muscle in enduring? Sometimes it is worth it, sometimes it is also in the sense of support. I am supporting the child in that moment to manage it, and that I trust them to experience that meltdown, because I know it cannot be otherwise. Meaning, they are not allowed to run into the street, because that is too dangerous. Then there might be a meltdown because I am holding the child back, but that is now paramount, and it is trusting the child. Of course, there are also situations where it makes no sense to go into this support and this, “you have to learn to endure it too,” because the child is already at a limit or has long since gone over the limit, and there would be no learning effect at all at that moment. And this daily balancing act, this daily re-calibration, that is and remains the task of parents with children with PDA, and it is also not just about the boundaries where it concerns the child’s life, because it is also about my own boundaries as a mother or father, that I learn to demand things so that I have a certain freedom, my autonomy is just as important as the child’s. That is my message, perhaps a bit new and provocative, but I believe that PDA children simply do not benefit from parents. On the contrary, there is the neurobiology or the autistic perception of these PDA children, and then they meet parents, and parents do not understand their child and try all sorts of things, and then there are difficult circular processes, or one could say vicious cycles, and the way out of these vicious cycles is a great challenge within the practical constraints that our society offers, and yet so rewarding, and I believe that the way out works by not forgetting myself. And if you truly parent according to needs, I think that is an important keyword, need-oriented parenting, and non-violent communication also helps a lot. And with non-violent communication, it is first about perceiving my own emotions. And that is something that is not taught in our society, not taught to children, but emotions are the basis of our experience and our life, even our health. And if we are cut off from our emotions, because we are traumatized, the child feels it and reacts to it. And that is why it is so important to learn to be with oneself again, to learn to perceive one’s emotions in the body, perhaps with body-oriented therapy forms or mindfulness exercises that one can do oneself, in order to then communicate needs in a good way. Many of us did not learn that in our upbringing either. And then, yes, need-oriented parenting means that my needs are just as important as the child’s. And that is a new thought, I think, because many parents try to relieve their child so much because they feel the child’s distress so much, but they are actually burdening themselves too much, and the child can learn, meaning they learn from parents who are emotionally well-regulated how to regulate their emotions better. That is actually the core of the issue, but it is a highly complex and challenging matter. That means, learning by example, learning from role models. That means, if I myself as a mother or father am clear about where I stand emotionally, if I am well-regulated myself, if I can demand my own, that is, my own boundaries for myself, and then enter into a good relationship with the child, a relationship at eye level, an equal relationship, and equally recognize that the child also has its very own and very special boundaries and respect them. In this form of relationship, there is no longer a self-sacrifice of the parents, well, there will always be a degree of self-sacrifice, but that one still tries, if I understand you correctly, Regine, to take care of oneself so well that one does not completely break down in this situation, that one always has to cater to the children. I would go so far as to say that one should learn to take care of oneself so well that one feels good, because if the mother or father is not well, and this is not PDA-specific, it is generally true for children, then the child is not well. That is why the accusations are so unacceptable, they can all be rejected, and also oneself. Many PDA parents question themselves and have guilt feelings, and because that is also in the collective unconscious, that parents are to blame if the child doesn’t function. And parents can really free themselves from that, because guilt feelings have never solved a problem. They have never initiated development. What initiates development is when parents truly work on their own traumas. We have many people who have traumas from their childhood. Be it emotional neglect, not being seen, or a symbiotic relationship with the mother, or they had to be a parent to their own parents, or there was drug or alcohol abuse in the family, or even sexual abuse or emotional abuse. Most people have some kind of trauma, and when we are traumatized, we are partly cut off from our emotions, and then, yes, then we are not happy, and the children feel that, and PDA children have such fine perception, and they might feel that something is not right with Mom, that something hurts? And it can be that they react to that with irritation or yes. And when parents begin a process where they can heal their own issues, or work through them so that they are in order, then the children get better, because children whose parents are not doing well, whose parents are not doing well, they have guilt feelings, their own guilt feelings. So, guilt is very present here in this field, with the parents, with the children, they also have guilt feelings that they behave like this and that they bring so much unhappiness to their parents. And when parents become loving towards themselves, they can also be loving towards their children. If parents treat their own inner child lovingly, then only to the extent that they are loving towards themselves can they actually be loving towards their children, I believe. In essence, this means that one is allowed to do trauma work for oneself. Whether this is related to major childhood traumas or not. It is not to say that PDA comes from that or anything like that. Yes, but if one enters into a good relationship with oneself, and if one grows as a person, that is already a win-win situation for oneself, then it is also a win-win situation for the child. Now, it is often the case that the situation has already escalated significantly, that the trauma in the family is very great due to the child’s sensitivity, due to the anxieties, due to the need for control. The whole family is affected, the parents are affected. Especially in such times, old triggers or trauma stories are awakened. And once that has ignited, it is very difficult at first. I think it is very important to seek help for oneself, also for the child. And that is also, of course, we know this from practice, Regine, very well, not so easy to find understanding from therapists. I believe it is very important not to give up at that point and to take good care of oneself and to seek appropriate contacts wherever possible, where one finds understanding and can find personal healing for one’s own issues, in order to regain stability for the family, for oneself, and increasingly for the family. That is how I have just perceived your message, Regina. Correct. Yes, that’s right, that’s right. And I would, I am also in these WhatsApp support groups, and I myself lead the Facebook support group for parents of PDA children, PDA Autism Parent Group on Facebook. We will link that in the box below so that everyone can see where Regina can be found with her Facebook group. Yes, exactly. And what was I going to say? I just lost the thread. Yes, unfortunately, it often starts with organizational matters, where to find the right school. And these are very important things. The framework conditions must be right for the child and for the parents, to arrange things so that it is feasible for everyone is a huge topic, and it is so important, it is the foundation, and to arrange things in such a way that one can then possibly recover a bit, but of course also to seek out all the little havens in everyday life where one can take a breath. That is so important, and I would simply wish that in these groups, the emotional support among each other would be cultivated even more, that it would become a culture, because professionals are scarce, and unfortunately, not everyone has access to psychotherapy or counseling, it is so important that we are also emotionally there for each other and seek friendships where I am seen as a person, where I also practice seeing the other, so that I can also do better with my child over time. Mhm. And I think that is very important because we, as advisory persons, of course, also always have the difficulty that there is not enough help available, as one would wish, that the theory of self-healing and bringing peace into the family through stability. That is an ideal goal that often seems unattainable in a crisis, and then to counteract that, because it is very difficult. That is also the work that we do here. That is why we are also making this video, to first bring enlightenment, to first bring understanding, to know that PDA means anxiety, PDA means a need for control, not out of stubbornness or meanness or whatever, but it means great distress. First, understanding, then applying the Panda strategies as best as possible, using all the resources available to us, and then, very importantly for one’s own health, for one’s own stability, also to seek contact with other people. That means networking, that means connecting with people who understand you, who listen, and who know exactly, yes, you are right. I know how you feel. That can also be incredibly relieving and, yes, counteracting trauma, when you have the feeling that you are not alone. Trauma also always means a feeling of loneliness, of being overwhelmed, of helplessness, of “I am alone in the world and I can’t do it.” That is actually a core element of trauma. And if you felt that you are in a crisis at this moment, look, there are also addresses. There are addresses at Fapta. You will find all the information in the box below, and also networking opportunities like in your Facebook group. Regine, once again about the Facebook group, where one can find help. Who is in this Facebook group? Welcome, Regina, tell us, who is there? All parents who have children affected by PDA, quite simply, quite simply. They are welcome to join the group for exchange, to be seen, to be heard, to be understood, to establish themselves and to network with each other, to exchange ideas, also in the sense of where did you find help, what helped in your situation, so that one has the feeling that one is not completely alone. Yes, exactly. Mhm. And a second group that I have open and lead is the PDA Professional Exchange Group for Professionals. We are also very interested in increasingly gaining professionals who have an idea or knowledge about PDA, as well as diagnostic centers that diagnose it, but also therapists who are open to learning in the field of PDA and in advising parents and families, and for this professional group too, there are various offers at FAPA, also offers for exchange, also offers for networking and mutual advice. So all this information, we will link it all below in the info box, and we are of course happy if there are more people who dedicate themselves to this topic, so that we are not lone fighters, and especially so that parents are not lone fighters. Yes, exactly. And we run an intervision group for professionals who accompany such families, so that they are not alone with complex cases either. Exactly. From Fa. Regine, I am very happy that we were able to discuss this topic here. Thank you also for your input and for your thoughts, and also perhaps for this slightly more provocative message: Panda is great, but dear parents, you also have to live and survive and protect yourselves, and you are allowed to exist and also have your needs and name them. You don’t have to dissolve yourself completely into thin air. I think that is also a very important message. Thank you for that. Thank you, Dorothea. Thank you very much. Yes, and to all of you, I wish you a good week and until next Tuesday again.