I was generally happy when I was very young. The demands were minimal, I could cope with my life, and the few things that were expected of me. Once I got to around the age of three/four, my mum expected my to put on my own socks, and I still remember the anxiety I felt, and I still don't think I've entirely dealt with the resentment. In hindsight, I could see that it was because this was a demand, or as I would now explain it, two demands- two socks, two demands. It hurt my thumbs to stretch the socks with my hands in order to put them on, I wasn't entirely competent when it came to putting my socks on either (these are also sensory issues). I believe that the sensory issues felt more intense as I was so anxious and upset about being left to fulfil this task- I felt trapped. Why would my mother do this to me? Why would she cause me to feel this way? Even writing this, I can feel the anxiety and dread inside me, and I still feel bitter, despite knowing I had no diagnosis, it was a reasonable request (for a child that we didn't know had PDA), and it was an entirely safe thing to do. As the vast majority of people who read this will have a child with PDA, I don't feel the need to explain what must have been going through my mum's head. How could I vocalise the extreme objection I had to putting on my own socks? There was no way, and I could not escape.
Demands in primary school weren't so tragic as to leave me constantly on the verge of tears, however I wasn't particularly partial to the place- it still had enough demands like "everybody sit down," for me to hate it. If you're interested in how I felt about school mornings, see my previous post. I remember demands such as having to line up when lunch was over were a need for extensive planning for me, I had to be in control. Five minutes before the bell rang, I would queue. The demand was less intense because of this, and I was prepared- I had completed the demand within the time limit, without having to rush, and at my own pace.
As well as being systematically late in primary school, I also had a habit of forgetting to get my 'homework diary' signed by my mum, once in year three. I saw this as an entirely pointless demand, and therefore didn't respect it. I think part of the issue was that because I struggled so much with demands that were of importance and significance, I simply didn't have the capacity to be dealing with this type of rubbish. It was around this time that homework became an aspect of my life; around one piece a week. In order to cope with this, I often found a way to rush my school work so that the work could be completed in the lesson, which somehow felt less of a demand to me, possibly as I was already there, in the lesson.
Meanwhile, at this point in my home life, my mum decided it was time that I took my own plate back into the kitchen once we had finished eating. Once again, a reasonable request. This again was a nightmare for me- another responsibility, and the demand somehow resulted in my legs feeling like they were the weight of an elephant's.
At school, we were now streamed for maths and English, and being in both of the top sets, I got a little bit more homework. The English teacher for my year group was the Deputy Headmistress, and I was eager to impress her. This resulted in her homework being the homework that I always failed to complete. The demand was more intense and of more importance than other demands for the other classes, as I cared more. And that paralysed me. I felt useless- I wanted to impress her, yet how could I do this when I couldn't do something as simple as complete the homework? The children who weren't nearly as intelligent or as capable as me could do homework, why couldn't I?
In year five, I had a teacher whom I hated, he was vile. Passive aggressive and rather sadistic, I still rather hope he burns to death. He terrified me. I was more anxious to not be late, and unsurprisingly I was late to school even more often. He told me my work wasn't good enough, or the best I could do. Whilst quite possibly true, the mere pressure I was under was preventing me- I wasn't getting sufficient sleep, I was anxious and on edge constantly, and the last thing I needed to hear was that my work wasn't good enough. I could still tell you the pieces of work which he made me reproduce, over seven years later; that's how significant it was to me.
I had a lovely teacher in year six, who brought out the best in me. She was calm and patient, never shouted, and I didn't feel unsettled in her lessons, so I could generally perform okay. No extra responsibilities were placed on me at home at this point, that I particularly recall.
I somehow stayed off the radar for the entire time in primary school, despite being late nearly every day. I was intelligent enough that they seemed to overlook the other issues at hand, fortunately.
Once at high school, the demands increased, obviously. I felt like I simply lacked self-discipline, for the workload was actually physically and practically manageable. The whole thing is practically a blur. This time, I turned to excuses more than ever. Why wouldn't the teacher believe my elaborate tale of the glass of orange juice that fell onto my beautifully produced piece of homework? I was performing well in class, my work in class was adequate, I was polite and eloquent, they had no reason to suspect anything. Conveniently, I required physiotherapy twice a week at this point, and I'd attempt to meticulously plan which lessons I hadn't completed homework for, and where I should lie and say I had a less academic subject like PE, so my mum would agree to arrange my appointments for that time.
As well as regular excuses such as illness, so that I wouldn't have to go to school, I would often pretend that I'd put my homework on the pile with everyone else's, and often succeeded, and just pretended to be dumbfounded on the occasions when I was caught. Occasionally I did have detentions for my lack of homework, but I also managed to keep this, and all the homework I wasn't doing, hidden from my mum.
In this time, I developed an obsessive habit with writing lists- I would list all my homework, and all the demands I had to fulfil. I'd write schedules of what time I would arrive home, how long it would take me to get changed, how long it would take me to get a glass of orange juice, how frequently I would have breaks to go to the toilet, and allotted time for the demands. However I was always more occupied with my precious lists than the demands. There would be a colour coding system, highlighting which demands could definitely be avoided, which ones to make excuses for, which ones to try to avoid, and a fraction in brackets, which showed how many of the set pieces of homework I'd actually completed in the month, out of the number that teacher had set.
All of this felt better for me than actually complying with the demand. I contemplated how I could 'injure' myself and make it look like an accident, so I wouldn't have to go to school. I had a list of excuses for various demands, which I constantly added to and amended. I would do anything I could to avoid the demands. I tried to 'practice' making myself sick (with no success), in case there was what I considered to be an 'emergency' in which I desperately needed to avoid school, so I could pretend I was ill.
Eventually, in year nine, my attendance dropped so low that regular meetings began to take place with my parents- the school were convinced the reason for my lack of attendance involved me being bullied, which I wasn't. I tried excuses like "the work is too easy," and anything else I could conjure up, but it was no use. I was told that the police would get involved and that "your mum could go to prison!" I already felt like I was in hell, and I simply couldn't deal with what I was already facing, so my response was simply, "I don't care." I did care, but I felt there was nothing I could do; I couldn't cope with school, and not for academic reasons.
It was at this point that the school suspected that I had Asperger's, due to my complete lack of emotional reaction about the matter. I was extremely bitter, and refused to be tested, as I knew this wasn't the problem! It felt condescending to me, and because I knew they didn't understand me or the situation at all (even though I didn't understand it, I just knew how I felt), I was very resistant and refused to be tested. They kept suggesting I was tested, which made the matter worse. I was on medication to help me sleep at this point, but it permanently made me feel groggy and only half present, and utterly apathetic, and this was the time that I began to physically hurt myself. I was so used to feeling full of adrenaline, due to the constant anxiety from demands, that I didn't know how to cope with feeling nothing, so if I had to hurt myself in order to feel, then so be it.
At this point, my relationship with my mum was far from ideal. She knew I was intelligent and capable, so she thought she was just dealing with a strong-willed and slightly disobedient child. Whilst being passive was my preferred approach, sometimes confrontation in order to procrastinate was unavoidable. I was in so much emotional pain, yet I was still alive, and still living the nightmare, constantly surrounded by never ending demands. I didn't care if she saw my wounds. I partially felt like she inflicted them upon me by making me go to school. I knew she had no choice, but the way I felt overpowered that for me.
In year ten, I started my GCSEs, and things weren't looking up. I was slightly more settled and confident with my demand avoiding techniques both at school and home, which made me feel more secure, but in the meantime, I had the pressure of qualifications. The same anxiety kept building, I kept telling my mum and my therapist (who we have now put a formal complaint in about, as well as the whole local service) that I was losing my mind. I knew I was. I knew I couldn't keep this up, I knew I was depressed, I knew I was anxious, I knew I was deluded, I knew I was paranoid, I knew I was hallucinating. And I certainly knew I wanted to be dead. I saw no point in my life. I got no pleasure out of life as my whole life was centred around facing demands. And demands are everywhere. I hated myself because I couldn't complete the demands. I was a failure, a disappointment, inadequate.
Following several A&E trips after miniature mental breakdowns, I was eventually put in a psychiatric hospital, aged fifteen. There were very few demands here, so I presented and coped suitably. I was an expert at pretending to be normal. I was discharged after less than a month, and back home, where I knew the demands would come again, I took an overdose. Back to A&E. I went to another psychiatric hospital, but the place was abysmal, so my mum took me out of there after six days. The process began again. I went to another psychiatric hospital for around three months, but they were little use, so I decided to come home. Finally, I went back to my original psychiatric hospital for a lengthy eight month stay. By this point the symptoms that came as a result of PDA, such as anxiety, were so pronounced that I couldn't hide any longer. The therapists and doctors, very competent when it came to dealing with their specialities, were moderately clueless as to how to help me. They knew I wasn't well so shouldn't be discharged, but they didn't know what to do. After around four or five months, one doctor in the unit, to whom I owe my life, came across a journal article on PDA, and thought it resembled me, very strongly. Fortunately, it was eventually so obvious that PDA was the answer. I no longer cared about being diagnosed with Asperger's, and went along with it, for I would get the diagnosis that I knew would represent me, the PDA Poster Child. I got my diagnosis very quickly after that, and finally began the process of self-acceptance, and having a reason more substantial than 'I don't like being told what to do.'
I just thought this might be helpful for some of you to properly understand what the process (for me, anyway) is like, living with PDA, and the intense feelings as a result of it, particularly with the lack of awareness. Hopefully it might explain some behaviour in your own child.