Posted by Shanti Roy on November 2, 2011
After going over the images I could use for this article I came across a small one of Edmund Pevensie from the film The Chronicles of Narnia: The Lion, the Witch and the Wardrobe, and knew that was the ideal person to use to describe this article. I always sided with Edmund. He wasn’t a bad boy, just misunderstood. I could relate to that.
The minute after reading over an article about Pathological Demand Avoidance syndrome (PDA), a sub-type of autism, I immediately rejected it as just another useless psychiatric label placed on people with personalities that went against the status quo. Naturally, this is usual reaction of someone with the disorder. Like Oppositional Defiance Disorder and Narcissistic Personality disorder and many other personality disorders the afflicted person will be in complete denial that anything is really wrong.
My defiance was because the article described my childhood; all those issues I had that my diagnoses of autism and ADHD and even selective mutism couldn’t describe. So, after about a day of self-denial and after reading another long article about PDA – which I only clicked on so I could basically rant about it with the other users on the autistic forum where it was linked – it suddenly hit: this is me.
Pathological Demand Avoidance syndrome (PDA) is characterised as a constant avoidance of following basic orders placed onto the individual by other people because of a high anxiety felt when they are not in control of a situation.
It is usually not as severe as autism or even Asperger’s when it comes to social skills (though I am the exception) which are usually at an average level and the individual uses this to their advantage. Their moods can be very temperamental and their parents or peers will refer to them as having a Jekyll and Hyde type of personality. When confronted or even disagreed with they will become angry or even violent.
PDA is on a spectrum of mild to severe like autism and Asperger’s syndrome and may be co-morbid with both disorders, or exist in ADHD, dyslexia, dyspraxia, Bipolar, etc.
The avoidant behaviour in school years can be seen by others as extreme passivity; the child will go completely quiet, not move and do anything so they can avoid doing the task being asked of them.
When I was a child I also had selective mutism, an extreme form of social anxiety, though I didn’t know it at the time. I barely spoke in school and in my early school years other students thought I was deaf. It actually excited them to hear me speak. It was especially frustrating for my teachers who struggled to teach someone who just couldn’t be taught. They were unaware of any processing issues or autistic symptoms or ADHD because I was just silent and appeared to be doing my work when really I wasn’t. Another symptom of PDA is to come up with crafty ways to make people think you are listening to them or doing your work just so they leave you alone.
One PDA moment that sticks out for me is when my year 4 teacher insisted I joined in on doing an exercise involving giving a blindfolded classmate directions. I didn’t say a thing and because my teacher was prone to saying ‘right’ whenever he got frustrated with students who were currently chattering about me, the blindfolded student turned right. I was told to sit down.
Another time my avoidant behaviour turned into comedy. I hated PE because I didn’t have the faintest interest in it and was bad at it due to poor motor skills, so I would muck around by running in slow motion while other children laughed and I got a firm word from my teacher to take the lesson seriously.
In subjects like math and science I was a pro at looking like I was doing my work when really I was drawing. I ended up winning the art award out of the whole school – the lowest achieving student, silent and unmotivated, turns out to be a better artist than the senior year.
I saw my avoidance as stubbornness. I just didn’t want to do anything asked of me. Back then I didn’t know I would only listen if I agreed in my heart of hearts that it was the right thing to do or that I first needed to know for sure that I could after given step by step instructions. Most of it was because of a fear of change which I still struggle with now.
At home I was no less avoidant and demanding than I was at school. I spoke a bit more but never in any conversational sense; I probably spoke to answer people and ask for things and that was it. I never tried to manipulate a conversation or people because I didn’t have that ability yet. As a wanderer I would insist that only my mum would come and find me otherwise I wouldn’t come back, although my sister always ended up dragging me back. PDA though I might be, bossy was I not – and my sisters were real pros. But I do love my sisters and my brother and am grateful they tried to keep me in line.
People often did things for me so I didn’t learn how to do things on my own from cooking my own meals, doing house chores to cleaning my own room. I think when I hit adolescence I was made to clean my room though. I don’t blame anyone for doing things for me; I know what I was like back then: extremely avoidant, had a very limited amount of general knowledge and would have typical meltdowns over any change or if I didn’t get my own way.
In my teen years avoidance turned into rebellion. The pressure from my teachers to shape up made me do just the opposite. My friends were the bad kids that got sent out of class, who got into fights with other kids (though they didn’t feel like the bad kids to me). And I always thought that just because they complained about school work that they were as bad as it as me. We were the class clowns; we were just bored. My inability to learn turned into apathy – I didn’t need it, everyone acted like school was so important but if I wanted to leave I could just do it – and then I did and was home schooled which is kind of impossible to do if the student decided that don’t want to do the work anymore.
Eventually I became a Christian after avoiding reading my Bible as much as possible from the age of 10 to 14. I was actually born into a church but it was never asked of me to get involved. A couple years later after getting into political matters, er Communism, I became defiant again and there was a constant war in my head about dropping Communism to be a better Christian or leaving the church altogether. I described myself as an on/off Christian. When the War in Iraq started I really hated to hear what the Pastor had to say about it. He didn’t know what was really going on. He just hated Saddam or Osama Bin Laden because they were Muslim and therefore not of God. My mum told me that his upbringing was different, i.e middle class and that just made me hate him even more.
When I did leave the church for good it had nothing to do with politics but my father’s passing and my guilt for not allowing myself to know more about Hinduism and not being able to understand him more. It was a very angry and confusing time for me.
Then suddenly I changed. I became more social although I had been slowly building my skills since I was about 14 or 15. It probably did have something to do with the church. I was a helper for a younger Sunday school class and hung around with the entire youth group, though I still remained silent. I thought my social life depended on being there than actually taking part. Then when I had my first and last relationship I realised I wasn’t as social as my boyfriend and his friends and I wanted to be. So, I developed the most profound level of socially anxiety imaginable.
One thing I noticed during that time is that when I decided to do something I went all out until my goal was reached. I committed to lose weight and lost 10kg in two months, the healthy way. I lost a further two or three after that. Then gained it all back with alcohol so after the break up I had to work on losing it again.
Years later after my autism diagnosis I realised I didn’t know as much as people and wanted to so I hit the history books, science and any book that looked interesting. I stopped sitting around in pj’s all day watching TV and made sure I got dressed before midday. I started to clean up after myself and do chores – one reason being that when I forgot to I got yelled at. After my ADHD diagnosis I was put on medication which finally made it possible to read with more understanding and get my head around impossible physics which now sounds about as simple as learning a times table. Information was staying in my head and it made me talk to people more.
Most of this turnaround was in a way PDA. These were things I wanted to do and when I saw people not following suit I got angry at them, confused at why they wouldn’t do it if it made things so much better for me. By getting my social anxiety under control (through reading a book about cognitive behavioural therapy and doing the exercises), by insisting I learn year 12 math and physics, by being more organised, by understanding my symptoms more I was taking control of my life. I would give people pointers about how to better themselves too in a very abrupt and emotionless way and wonder why I was being accused of being hard on them. The solution was so simple to me but other people still were umming and arrring and I couldn’t understand why.
My mind can fall into a very set way of thinking which I do temporarily overcome by opening my mind by looking at a situation from a different point of view (this is how most of my arguments start out ironically) but there are times when the old way of thinking comes back that says the only way to do something is the one that gets answers by ignoring emotions and looks at the most logical way of dealing with a situation. I make fun of myself by adopting a Spock accent and saying ‘Logic dictates that we...’ whenever someone becomes emotionally overcome from an issue they are having. This probably doesn’t provide the worrier with much comfort and just increases their stress.
Since I have increased my social skills and speak freely and have become more impulsive and my increased knowledge and curiosity gives me many ideas and opinions, I have become rather argumentative. Not long ago it became very problematic. I would get into heated and emotional debates about issues that I’d soon forget about. I felt it foolish to get so passionate and upset over these things that I’d soon forget about so I adopted a more rational way of arguing. When I am engaged passionately in one on one conversation and can at times forget that my conversational partner has their own thoughts and feelings and may feel insulted by my constant correction of their grammar or their knowledge of...anything really. My motivation is to teach them the facts because I feel comfortable once someone knows the facts and it doesn’t enter my mind that people take it personally when you challenge their opinions, and don’t take it well when you say “stop being so emotional.”
PDA is often described as avoiding listening to people but it is also about being in control. Even when it appears to be overcome PDA will be with the person for the rest of their life. So, what can be done about it? As someone who knows what it’s like to have PDA as a child where it interferes with education and a healthy relationship with the family and peers I will say persistence. We are sly little devils and will go out of our way to avoid doing a task. Behavioural intervention doesn’t work on us – something I always think about when I see videos of autistic children learning from it – I wouldn’t have done that but remained silent and stubborn until taken home – and not even a routine structure works but a more negotiatitive style may show some progress. The parent and teacher must check that the child is actually doing their work and retaining the information. One thing I have found that seems to help me is to keep me busy. I’m bored and restless when not intellectually or physically stimulated. Smacking will just make the child have feelings against you and work out better methods to make it look like they are listening.
Many times when someone told me my behaviour was wrong I would take it personally and hold it against the person, usually a parent in the church in which I’d mumble my reply of “you’re not my mum, you can’t tell me what to do.”
You must keep in mind that PDA is no fault of the child or their upbringing; it is a neurological disorder common in autism and ADHD. When the person afflicted realises they have it and actually believes they have it they will do their best to correct their behaviour, by themselves. But it still has to be corrected especially if it interferes in education and communication skills and the defiance and avoidance this disorder brings can bring about denial and more behavioural disorders such as Oppositional Defiance Disorder or Conduct disorder.