I first learnt about pathological demand avoidance when my son was 7. At that time, I was struggling with his behaviour. For his dad, his grandparents, at school and with pretty much anyone else, he was mostly compliant, well behaved and ‘toed the line’. For me, he would push every boundary. Of course, I heard many times that the problem was me. I was too soft, I didn’t discipline enough, his behaviour was my fault. I often doubted myself, believing these words, thinking I was a terrible mum, unable to effectively parent my boy. But, in the moments of clarity, I would always tell myself that I was parenting my son in the way he needed. I allowed him choice, autonomy (within reason) and gave him a voice. He has strong opinions, and I allowed him to share these, be heard and have the respect he deserves. I never felt the ‘behaviourist’ approach was right for my son. It was never a conscious decision, more of an instinctual one.
When I started to read about PDA, it triggered memories of him being 2-3 years old. I would pick him up at the end of a long day at nursery. The reports were varied; ‘he could not sit still; he did amazing today; he got into a fight with another child; he made a fantastic Lego creation; he argued with the adults because they put his friend in a timeout that my son did not agree with’. But regardless of how the day had been for him, I would be faced with the same routine. I would get his coat on and take him out to the car where the battle commenced. As I tried to get this tiny boy into his car seat, he would start to fight – punching, kicking, biting, back arched and resisting being strapped into the car for the 10-minute journey back home. Night after night I would stand alone in that car park, sobbing, broken and wondering why my son hated me.
The more I learned about autism and PDA, the more it all began to make sense. In those moments in the car park, he was dealing with the overwhelm from a day plagued with noise, lights, smells and demands. Along came his safe person and he would unleash the pent-up frustration from a day spent with a barrage of sensory overwhelm. Looking through the PDA lens, so much started to make sense.
As my son has got older, taller and stronger, so has the PDA. He could no longer continue with the onslaught of constant demands at school. He could no longer hide behind the mask he presented to the world. He now lives in a state of anxiety. The thought of getting dressed overwhelms him. I can see the panic in his eyes when he knows we must leave the house. Every expectation we have of him now needs to be framed in such a way as to not trigger the anxiety that is constantly sitting just below the surface.
This week, I planned a 2-day trip away to Manchester, only an hour away from home. Legoland Discovery, Chaos Karts, Pizza Hut and The Museum of Illusions. Four things that my son would absolutely love and one night away in a nice hotel, just the 2 of us. The whole experience was planned around him and his interests, what could go wrong? I was excited. It’s not often that I get the opportunity to give all my attention to him without the distractions of work, home, family, housework and the constant battle for support … This was going to be an amazing time making precious memories with my precious boy. I had high expectations.
However, I had completely forgotten the cardinal rules of parenting a PDA child! In my excitement to spend quality time with him, I made all the rookie mistakes of someone who does not know about PDA. As I talked about what we would do, the fun we would have and the memories we would make, inside my son the weight of expectation and demands was building. A silent war was being raged within him. He wanted to do these things, be with me and have fun, but it had now become a demand on him to do so.
As the day arrived to go, the walls came up. He didn’t want to go. He wanted to stay home. He didn’t want to get dressed. He couldn’t brush his teeth. He could not tolerate the socks on his feet. My heart was breaking as my dreams of the perfect trip away slipped away. The reality of what I had done came crashing around me as I stood, looking at my son who, despite knowing we were going to do all the things he would love, could not, in that moment, tolerate the demands I had now placed upon him.
We did go away. It was not the fun packed experience I had hoped for. We didn’t manage to do everything I had planned. My son had little moments of happiness, but also many moments of anxiety and overwhelm. I learnt a huge lesson. I must remember the weight of expectations that my son carries. If he is told to have fun, this becomes a demand and makes it far less likely that he will have fun.
During our time away together, my son hung off me, jumped on me, squeezed me, and bit me (gently and without malice – one of his ways to regulate right now). If anyone was observing us, they would have seen him punch my arm many times or squeeze me as hard as he could. If they saw my face, they would notice how I would wince and try to hide the pain I was feeling. They may have looked and judged us and wondered ‘why is that mum letting her son get away with hurting her? She needs to discipline that boy’.
I was mentally and physically exhausted by the time we arrived back home. I felt bruised, sore and my entire body ached. But there was this one moment when me and my gorgeous boy were sat in Pizza Hut on Monday evening. He was happy, content and we were laughing. He looked free from the anxiety. He was at peace. That moment right then was worth everything to me. My aching muscles and the bruises have started to fade. That memory remains strong. That is why I do it, the fleeting moments where it can all come together, and my son can just be the amazing little boy that I know he is.
