Today, May 15, is pathological demand avoidance syndrome (PDA) awarness day. Pathological demand avoidance is a subtype of autism characterized by extreme anxiety, a need to resist everyday demands and a need to be in control. Core features include:
- Passive early history in the first year, avoiding ordinary demands and missing milestones.
- Continuing to avoid demands, panic attacks if demands are escalated.
- Surface sociability, but apparent lack of sense of social identity.
- Lability of mood and impulsivity.
- Comfortable in role play and pretending
- Language delay, seemingly the result of passivity.
- Obsessive behavior.
- Neurological signs similar to those seen in autism.
When I first wrote about PDA, I wasn’t so sure I believed in its existence. I recognized and still recognize many features, but the condition isn’t recognized in the Netherlands, so I can never be sure whether I have it. Also, I doubted whether my behavior may be a normal reaction to being in an institutional environment for too long. However, when I read stories from adults with PDA or parents of children with PDA, I recognize a lot. I am going to write about this now.
Pathological demand avoidnance is an autism spectrum disorder that shares traits with oppositional defiant disorder and reactive attachment disorder. However, children with PDA are not willfully naughty. The only rule I routinely broke was the one about not stealing candy. Then again, doesn’t every child do that?
I was a quiet child. However, i could show aggression seemingly out of nowhere. I acted out particularly when my parents or sister wouldn’t do as I said. For example, even as a teen I had no clue when it was not appropriate to demand my parents do something for me and I’d get upset if they refused.
I was an early talker and quite sociable as a young child. For example, I’d shout “Hi!” at everyone we met in the streets. This is expected in the tiny village my husband and I live in now, but it is definitely abnormal in Rotterdam, where I lived as a child. I was comfortable – perhaps too comfortable – in social interactions with strangers. As I grew older, this got worse. This is what got me thinking I might have attachment issues.
I was very comfortalbe in pretend play, but on my own terms. Autistic children don’t tend to engage in pretend play with other children, but I did. I however dominated the play situation. I was always the one who thought out the scernarios we were going to play. I also made the rules of what was “proper” pretend play. For instance, my sister could not say “My doll said ___”, because after all she was acting out her doll.
Most of my life, I’ve been able to hold down a conversation, again as long as it’d go on my own terms. I tend to dominate conversations and make them about topics I want to discuss. When this happened at my diagnostic assessment, my parents said I wanted to make conversation about me all the time. This isn’t necessarily the case. For instance, yesterday a Christian nurse and a patient with his own set of religious beliefs were discussing religion. It wasn’t about me at all and I didn’t make it about me, but as soon as i jumped in, I tried to control the conversation.
The core feature that got me thinking about PDA as applying to me, is however my resistance to ordinary demands. This may be an oppositional behavior too, but in PDA, the need to resist demands is not out of defiance. It seems to be more a core need stemming sometiems from anxiety and sometimes from sensory issues. For example, children and adults with PDA might refuse to brush their teeth when asked, but this is commonly out of sensory defensiveness. They may refuse to do household chores out of anxiety. Interestingly, they may do certain tasks that create anxiety in them when they’re asked to do them by others, when they are on their own. I can do household chores much more easily when I am the one in control or when I’m on my own than when it’s someone else demanding I do them.
Children and adults with PDA are often described as Jekyll and Hyde. They can act perfectly normal as long as they’re in control and their anxiety isn’t provoked. However, when people make demands of them or situations or people don’t follow their rules, they have rapid mood swings. I definitely relate to this and often wonder whether it’s my autism or a borderline personality disorder trait.