Pathological Demand Avoidance
-by Jo Richardson
When I was pregnant with my son, the doctors told us that he was going to be a hyperactive child. He was constantly on the move. All of our scan appointments and check ups had to be double appointments as he wouldn’t stay still long enough for them to be able to take their readings and measurements and he soon had the reputation of being a pain in the backside baby.
An example of this was when, when I was about 7 and a half months pregnant, I panicked that he wasn’t moving very much, so I counted how many times he moved in an hour and called the maternity ward to ask for advice. The midwife I spoke to asked how many times he had moved in an hour. 21 times. She laughed and said that they hoped for 1 or 2 movements in an hour. 21 times was worryingly few compared to his normal movements.
Within an hour of my son being born, it was clear that he wasn’t like other babies. While the rest of the new-borns on the ward were happy to be laid in the hospital cot (ones that were set up next to your hospital bed) my son screamed blue murder every time anyone tried to take him from me or try to put him in the cot. The nurses tried everything and it became clear, very quickly, that there was no way that he was going to accept either of these options. He also didn’t want anyone else to hold him, except me; again, screaming his lungs out every time. So, I spent his first night on Earth cradling him while he slept, terrified of falling asleep and dropping him and desperately needing sleep as my body was recovering from having a C section.
This didn’t change until he was at least 3 or 4 months old. I had to hold him continuously; day and night because he couldn’t cope with not being connected to me at all times. He also only slept for 45 minutes at a time with a good few hours in between naps so we were generally awake 24/7.
As you can imagine, I received a lot of comments and ‘helpful advice’ such as;
You’re making a rod for your own back.
He’s manipulating you Let him cry it out.
You’re too soft on him.
You’ll make him a mummy’s boy.
You’re teaching him that he can’t cope without you being there.
But I instinctively understood why he didn’t want to be held by anyone else or to be put down. Why he felt this need to be close to me at all times; anxiety. He had to be in control of who he was with, how he slept, etc. It made absolutely no sense to me why I would go against what he was clearly communicating that he needed; regardless of the constant comments and advice given to us. Though I couldn’t understand why no one else could grasp it.
When he was about a year old, he began to allow my mum to babysit him for a while to give us a break and he enjoyed going to all of the mother and toddler groups and family centres with me. Up until he was 18 months old, he seemed to be following the usual timeline for development in all areas. We certainly had no concerns about any delays or potential issues.
But when he turned 18 months old, everything changed. He suddenly underwent a dramatic regression in all of his development areas. His separation anxiety went into overdrive and he started refusing to acknowledge anyone except me; even animals. This is when the violence began. Any slight thing seemed to trigger the violence and it was solely aimed at me. He would bite me hard in places where I couldn’t reach him; like between my shoulder blades. He would punch, scratch and kick me, regardless where we were or who we were with; even when I was lying in bed with him. We were asked to leave several mother and toddler groups and therapy groups because when he attacked me, it was relentless, intense and full on. It scared the other children; the parents held their children away from us to protect their children. I was utterly lost as I had absolutely no clue as to why this was suddenly happening, what was causing it and I had no idea how to help him. He was obviously in distress and I, his mum; the person who is meant to instinctively know how to make everything better for him, was in a tailspin and had become scared of him.
When we were asked to leave the group speech and language therapy course, the women that were running it suggested that I look into autism and to call the health visitor to get an assessment organized. I did this as soon as we got home.
The health visitor came out to see us and completed an ASQ:SE.2 assessment form that was looking at his behavior and development and it a score chart. The score chart showed that a score under 50 meant that he was at no or low risk of being autistic, a score of 50-65 indicated that he needed to be monitored and a score of 65-110+ was an instant referral for an autism assessment. My son scored 225. The health visitor seemed to go into panic mode and told me that he had scored the highest score that she had encountered and quickly referred us to all possible and available services in our area. We were inundated with Speech and Language therapy, Play therapy, Portage, pediatrician appointments, even a sleep therapist. All of which seemed to be in panic mode because of this score. He refused to acknowledge any of the therapists. He still refuses to acknowledge most people and animals now.
While all this was going on, I had plunged head first into researching autism, all common co-morbid conditions, and completed a lvl 2 diploma in Understanding Autism, a number of other courses and attended every autism conference that I could reach in my car. This is when the lightbulb moment happened. I didn’t need any specialist to tell me that my son, my husband and I were all, in fact, autistic. But my son and I didn’t quite fit the autistic mould. So, I delved deeper and discovered PDA. NOW things made sense. I suddenly saw where I had been going wrong; I had been trying to parent him in the way that I was brought up; the way that seems to be intrinsically drummed into us before we become a parent. This way is totally wrong for raising a PDA child. We had to throw away any concept of parenting and start to listen to him and let him take the lead.
Sounds easy when you write that down but, as a PDAer myself, relinquishing any control is akin to asking me to set fire to myself. It is abhorrent. This is where a lot of our problems lay; he and I were in a constant battle of wills; fighting for control over every situation, decision and activity. When he turned 18 months old, he lost all language that he had previously attained so the only way he could communicate was through behaviour, and his reaction to any form of demand or restriction to what he wanted to do; at any given time, was violence.
I cannot articulate the emotions or feelings I went through while this was going on. The closest that I think conveys it would be; shame. Helplessness. Fear. Constant overwhelm. He didn’t sleep more than a few hours at a time, and no more than 4 hours in a 24-hour period, so this was our life, 20 hours a day, month upon month that seemed to stretch into an eternity. I knew it wasn’t his fault. I knew that he was suffering as much as I was and that caused me so much upset and shame as a parent; that I was causing him distress, that I was a terrible parent, that I didn’t know how to make everything alright. What really did help though, was the fact that I could relate to how he was feeling and understood him far more than anyone else; specialists and family members. I connected with him on a neurological level and the more I understood; the more I was able to adapt what I was doing in order to reduce his anxiety and stress levels; therefore, the level of violence.
As time went on, we adapted and changed our parenting style to a more child led style and the violence reduced until it was only happening when he was going through a development jump or growth spurt.
Being PDA myself has provided many advantages to raising a PDA child. I understand him on a neurological level, so when he does react violently or badly to something, I know instinctively why he is reacting that way, when others see it as naughty or defiant behavior. We connect on a level that is impossible to define. He still sees me as being an extension to himself and we can communicate with each other in ways that he can’t with anyone else.
When he started school, his violence came back and grew to an unprecedented level. At school he appeared to be coping but I could see the signs that he clearly wasn’t and fought with the school, the local education authority and an educational psychologist (who said that his violence was my fault, because I am autistic) about getting him the support he needed. It ended with him becoming a school refuser and, at that point, I completely stopped any attempts to get him into school and ignored any demand from the school, etc. to force him into school. He was communicating clearly to me that he wasn’t coping and that he wasn’t prepared to go back.
Once he stopped being at school (the beginning of the second week of January term starting) the violence completely stopped. He began to thrive, both educationally and mentally. His anxiety and stress levels greatly reduced and his learning has come on leaps and bounds. I now refuse to listen to anyone who does not understand my child.
But alongside the advantages, there are definite disadvantages; We emotionally bounce off each other in both good and bad ways. We can bounce joy and excitement off of each other, but also anxiety and anger. It is like having building blocks and every bounce adds a block to the tower; which is great for those positive emotions, but when it is the negative ones, it can end in one or both of us having meltdowns.
When you are PDA yourself, and you have a PDA child, the fact that you both have an overwhelming need for control, can make life very difficult at times. If you have not encountered the PDA need for control, I can tell you that it is absolute. At home, I am in control of everything; the finances, bills, appointments, schedules, socializing, the housework, food, shopping, even how things are laid out in cupboards, everything. It’s not that I want to be responsible for all of these things; I would LOVE to be able to share these with my husband who is more than willing to take over wherever I want him to; but I physically CAN’T relinquish control of these things. The mere idea of giving up control of anything is horrifying; like being attacked by a wild animal.
Now imagine that someone else; with the same need for control, moves into the house. It’s a hell of an adjustment to make. When you have two people with the PDA need for control, one of three things will happen; one will have to relinquish control (which would cause them a great deal of anxiety), one will have a meltdown (due to the level of anxiety and stress caused by fighting for control), or you will end up in a battle of wills that could last for hours.
My number one priority as a parent is to ensure that my child is happy, fulfilled, safe and free of anxiety. So, in our house, it is usually me that relinquishes control as I understand how not being in control feels and I don’t want my son to feel that way. However, by doing this, my anxiety tends to be sky high every day until he goes to sleep at night. There are obviously times that I don’t, or can’t, relinquish control (usually because of safety reasons or that my anxiety is so high that if I do give up any more control, that I would end up in a meltdown which would not help either of us) and this is when he either reacts very badly (hitting, screaming, crying) or, because his own anxiety levels are low at the time, he is able to cope with it. But it is a balancing act; every day.
When he is feeling anxious at all, my son becomes very controlling; to the point of having control of how my whole body is positioned, where I sit and whether I talk or not. If I move at all or try to speak, he will rush over and put me back in the exact position he originally put me in. As you can imagine, for a PDAer, this is my idea of absolute hell. To not have control of my body or if I can speak or not is akin to sitting in a pit filled with spiders. It is unbearable but I control my reaction to it for as long as I can (as I understand that, in that moment, he needs to have that level of control in order to feel calm) before we either have a battle of wills over it or my husband takes over and I take a break.
The other thing that we struggle with is demands. We try to maintain a demand free environment, but my son is exceptionally demanding (generally demanding something from me every few minutes) and wants my attention 100% of the time which is monumentally overwhelming as every fiber of my being wants to flee from the demands he puts on me.
The most important thing to a PDAer is their freedom. Thankfully my husband is very good at recognizing when I am reaching the point where one of the 5 F acute stress reactions are going to kick in, and takes over primary care of our son so that I can escape upstairs, self-regulate my anxiety and take a break. However, it is not unusual for me to reach one of the 5 acute stress reactions 3 or 4 times a day. Which is utterly exhausting by bedtime and, when he goes to sleep, I am extremely washed out, touched out and need a lot of personal space in order to regulate myself before he gets up again; which doesn’t exactly help a marriage when this free time is meant to be spent together and the last thing you want to do is talk or be touched.
Another way that demands affect us is that, when I do ask him not to do something, he, of course, generally avoids acknowledging that I have said anything, which triggers my need for control over the situation as he is refusing to be under my control – which, honestly, I can totally understand and respect.
I’m not going to lie; life here is challenging and exhausting a lot of the time. But is also fun, joyful and never tedious; We don’t do routines or schedules and when our PDA flows connect, it is a wonderful experience. We both enter an almost Zen mode where we are both doing what we want to do, but we are doing it together with no demands or relenting control on either side. It is very hard to describe, but it is like running really really fast but not getting out of breath. That feeling of euphoric freedom when you are free to do exactly what you want to do and no one is trying to hinder you.
We both have our PDA demons that reside within us; waiting to leap out and protect us. Keeping them both at bay all the time can feel like walking a tightrope and trying to simultaneously cope with his demands and not putting demands upon him can feel like I’m trying to solve an impossible maths equation in your head.
But I wouldn’t ever want to change either him or me. I love that we are both PDA. I love the differences to other people, the way we see things and solve things. Yes, there are times that I want to get in the car and run away because it is HARD and sometimes, when the violence is bad, it feels like you are in a domestic violence relationship that you can’t leave and you can’t blame the person who is hurting you, because you know that they don’t have control over it, they don’t want to hurt you and they are the person that you love more than anything else in the world. It can be a real head fuck.
Author note: I have attempted to write this article several times. I want to make it clear that I am passionately supportive of PDAers and am proud to be a PDAer myself and of my son for being one also. I am not, in anyway, attacking or villainizing PDAers in this article. With that being said, I want to give a realistic viewpoint of parenting a PDAer when you are PDA yourself; without rose tinted glasses and without focusing just on the negatives.