The PDA profile

We’ve all heard the statement ‘when you’ve met one person with autism, you’ve met one person with autism’, but is this also true for PDA?

I’ve heard many people say that the profile or trait list for PDA describes their child ‘to a T’, or ‘could have been written about X’. I haven’t heard many people say this about the autistic profile/trait list. For autistics, the autistic trait list is a hit and miss list. Some people make no eye contact whilst others stare at people for ages, some are non-verbal whilst others never stop talking, some are confined to wheelchairs to move around whilst others merely bump into furniture occasionally, some have lots of friends whilst others have one or none, some obviously stim whilst other’s stims are only noticed if you know what to look for, some ‘get’ sarcasm whilst others don’t, some are empathic whilst others are alexi, some have lots of co-morbids whilst others don’t. It varies.

The PDA trait list though, whilst being far smaller, seems to fit nearly 100% (discounting the ‘language delay, seemingly as a result of passivity’). When you add in other PDA traits, such as a preference for change, a need for control, social manipulation, ‘Jekyll and Hyde’ behaviour, etc, it seems like PDA kids are peas in a pod. It’s rarer to find traits which aren’t shared by other PDAers than Autistics. If we were to give out a list of Autistic traits to Autistics and ask them if they fit them, I’d be surprised if the match exceeded 80%. But if we were to give out a list of PDA traits to PDAers and asked if it fit then I’d be surprised if the match didn’t exceed 80%. As far as I can see PDAers are more similar than Autistics.

Maybe we could say ‘if you’ve met one PDAer, you’ve probably met most PDAers’.

Of course they do have their differences, we’re not clones. PDA is a sub-type of autism so naturally we will have differing autistic traits too. It’s just funny how thousands of children from all across the planet, with different socio-economic lives can all have the same list of characteristics which describe them ‘to a T’.

What do you think?

6 thoughts on “The PDA profile”

  1. Maybe it is partly due to the immense relief that families and individuals feel, after years of being severely misunderstood, of being able to identify at last with a truer picture? Even when professionals can perceive or acknowledge PDA, there is still a very poor level of understanding how to accommodate such persons though in my experience – and when the standard ASD strategies don’t work (and also cause distress, anxiety driven behaviours and traumatising unsuitable responses such as restraints) experts will misapply the diagnostic criteria and say the PDA individual is “willfully disobedient” “socially manipulative” and “Jekyll and Hyde” alluding to a very different type of condition(s) such as Sociopathic or Schizoid.. or of course, just blame the mum for being a terrible parent anyway.

    Or there may be a Nature/Nurture element to PDA, and some young people who perhaps also have other qualitative conditions (including Gifted or “high potential” – also marked by asynchrony, emotional and sensory regulation difficulties/ differences, and social interaction issues), who may have been able to blossom in less prohibitive and heavily directed formal educational settings break down..?

    I hope we can continue to educate our communities, change systemic problems in our institutions, for PDA voices to be recognised and valued. I am so weary of the harm inflicted on us by people who think they know better!

    Thanks for writing and sharing your thoughts, and best wishes.

    1. Yes, I hear many parents sounding relief at finally finding the thing that fits their child, and relieves them of the guilt that they may be the ‘problem’. It’s sad that many professionals are so quick to blame the parents, it just adds to their own internal guilt and is so wrong. Misdiagnosis seems to be common place when it comes to PDAers and def causes more harm. Some kids have been left with PTSD from the mistreatment of so called ‘services’. The sooner PDA is recognised and properly diagnosed world-wide, the better, for everyone involved. I hate to think where many children and adults would be now if it weren’t for the internet. I do wonder if there are some who are lucky enough to get the best environment for them in order to make it into adulthood relatively unscathed. Those schools where the child gets to choose what they will learn sound really good, it would be interesting to see whether a PDA child would thrive in that environment. In the mean time I think if we just keep spreading information about PDA as best we can, then hopefully we can make enough difference to people’s lives to minimise the damage some professionals cause.

  2. Great post and comments from Rain. It is uncanny, the very specific traits that the PDA person share. In a way, it is helpful / a positive because it does leave less doubt in the diagnosis process. Its the voices of all people connected with PDA joining together that will alleviate so many of the difficulties you have raised above. Power in numbers. This is why blogging helps us get the messages out and become voices as one. xx

  3. Sorry for spamming you with comments today! Am binge-reading your blog and connecting with so much of it. And yes, the profile fits both me and my daughter to a T. Except for the language delay. If anything, we both spoke a little earlier than typical, if you don’t count my selective mutism that came at age 3. But I was talking lots before that.

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