Autism … which are the PDA bits?

Ok, so I have autism, but it is a PDA type of Autism, how does that work?

Of course, it is important to start by saying that autistic people are all individuals, but there are also things we have in common – which is of course how we know we are part of the tribe.

Some things are experienced by lots of autistic people, and others are particularly noticeable with a PDA profile (though others might have them a bit too). Having some sensory extremes, perhaps stimming, watching things on repeat, learning some stuff in great detail, not quite working out what’s going on with friends … that is likely to affect lots of us.

Being ‘demand avoidant’ is the big one for PDA, although other people with autism can also avoid demands. If it rules your life, then you are likely to be pathologically demand avoidant. It will also mean that anxiety is pretty much ever-present as well, and although you like to know ‘what’s going on’, you are not a fan of routines. You are likely to find that your mood can change really quickly, and you may be quite impulsive.

Here are some of our thoughts …

Tony: I tend to see a description of Asperger’s to be a great starting point. There is far more material out in the world on Asperger’s than on PDA. I find for basic conversation, I often just tell people I have Asperger’s because it is easier, and then if and when a conversation develops further, I can start to discuss the subtle differences (subtle from the perspective of an outside observer, those differences are enormous diagnostically speaking when it comes to what treatment/management strategies are used.)

It seems to me that those of us with PDA are much better at masking and in particular, mimicking. I think that goes hand in hand with a slightly better sense of social awareness. PDAers seem to be acutely aware of others picking up on our social deficits, though deciphering what exactly it is you are doing wrong can be a mystery.

I liken prolonged exposure to demands to someone who is claustrophobic being put in a box. For a short while it may be just bearable, but after a while I become panic driven to flee the situation. That is what had led to such a complex assortment of ways (including manipulation – which also is not generally seen in Asperger’s, not at the same level at least) to avoid the demands. The overwhelming degree to which demands induce anxiety and our pathological need to get out from under them greatly contribute to the need to avoid as many sources of anxiety as possible.

Riko: I like to say ‘all PDAers are Autistic but not all Autistic people are PDA’. The way I see it is that PDA is an autism sub-type. We have all the same traits as autistic people, which is varied anyway, but some of those traits are a bit skewed by the PDA aspects. I wonder just how this is so, but I know myself that PDA is genetic so there must be a gene or something which causes PDA, so by default autism must too be genetic.

Autism itself is so hard to pin down in terms of traits, there’s stimming, social difficulties, sensory issues, motor skills problems, dislike of change, struggling to make eye-contact, struggling to communicate emotions, difficulty understanding our own and/or others’ emotions. We all have these in different ways to different degrees, but they are slightly different in PDAers, so some may not think they are autistic simply because autism can be so hard to understand and work out.

Take the dislike of change, one of the key traits of autism is preference for routine, but PDAers do better with variety, it makes it easier to manage demands, this doesn’t mean we’re not autistic, just that the PDA aspects override the other autistic trait.

Sally:  I find it hard to separate my PDA traits from my autism, but I know PDA adults who don’t identify with having a more typical presentation of autism and they have helped me to pinpoint my specific PDA traits.  As I understand them, these are:

Entrenched demand avoidance. This can be subtle – invisible even – in its operation, but it shadows pretty much my every move. Since learning about PDA, I have become better at spotting it operating within myself. It’s a reflex reaction to any kind of constriction or directive imposed on me (even my own plans or signals from my own body!) and I just automatically want to evade or ignore it. If I can’t escape a demand, my fight/ flight/freeze reflex activates. I’m the sort of PDAer who masks and I tend to TRY to hide my avoidance and look calm on the outside. 

For me, pathological demand avoidance feels like a primary reflex rooted in hypersensitivity to a sense of demand that maybe everyone has, but is unaware of.

Another hardwired PDA trait is very high anxiety. I don’t see this as triggering my demand avoidance, more a kind of double whammy twin trait. I see demand avoidance and anxiety as operating independently of each other, although often at the same time.

Other traits I have that seem to be PDA are: wanting to be in control of our own lives; an interest in people (maybe obsessively); inability to cope with not knowing; passion for word play; creativity; a rich fantasy world (daydreams or role play); wanting to be right; being critical of others, but very sensitive of criticism of me; not liking to be told what to do; proneness to being hyper or silly; impulsiveness; bad at budgeting; intense emotions; overloading easily & needing downtime; coming up with unconventional solutions; can be charming; drive for justice; wanting to help people; championing the underdog; disregard for convention & social hierarchy.

Julia: “I feel very autistic. I have lots of sensory challenges – I don’t like bright lights, or loud noises or strong smells. I find some things that most people either like or don’t notice really annoying, like bird song. I think my autism means that I can’t ‘zone out’ the noise but my PDA makes me angry about it because I can’t control it.

I see PDA as a type of autism with an added twist. I know my social interaction and communications skills can be a bit odd. I hear things coming out of my mouth sometimes and feel about myself like a parent might feel when their child says something a bit inappropriate. I need help from my partner in all new social situations.

I especially struggle when talking with medical professionals in a social setting – it’s like I’m having an internal argument with myself, I know I’m supposed to treat them with greater respect because of their status/qualifications but the other part of me is thinking why should I? And why are there so many ways to say ‘hello’? And what’s shaking hands all about, either hug or don’t hug! Neurotypical people just seem to be able to autopilot and assess situations instinctively. I wish there was an app I could use, entering the criteria of a situation and getting some suggestions! I tend to look for other people who seem to be feeling the way I am and approach them – I go and find my tribe.