Could it be Pathological Demand Avoidance?

The first in a planned series of posts on what I *think* I know about autism.

When a child is first diagnosed with autism or aspergers, parents read all the well-known text books, are referred to the same websites, and advised to use the standard autism parenting techniques.  With the correct diagnosis, luck, early intervention, support and services, the child will hopefully be helped to achieve his or her full potential.  For most families there are lots of speed bumps and meltdowns along the way, because every child is different, and what works with some, does not work with others, despite the insistence of autism service providers.

But sometimes things are very difficult indeed.  It could be the severity of the autism, challenging behaviour, multiple diagnoses, or any of the other slings and arrows that get thrown at families, who sadly are often blamed when the child's progress doesn't go to plan.  The implication is that the parents are not "strong enough", don't try "hard enough", are too selfish, too selfless, too useless to be able to help their child.

Sometimes it's because they haven't got the right information.

If NOTHING seems to be improving life with your child on the autism spectrum, it might be worth checking out the signs of Pathological Demand Avoidance, a diagnosis that is now being recognised in the UK and Ireland.

Here are some of the signs of PDA:

Demand Avoidance


Were you one of those teenagers who yelled "Don't tell me what to do!"  I certainly was.  Children with PDA are a bit like this, and will find clever and creative ways to avoid doing what they're told.  Tell them to choose between two courses of action and they will find a third....

Imagination


This helps with finding excuses to avoid doing things.  It can also increase anxiety, as they can imagine all the frightening things that can happen, even in their own homes.  They may also have hypochondriac tendencies, especially once they can google symptoms, and nothing but reassurance from someone in a white coat will calm them down.

Destructive Patterns


Once they recognise that telling their children what to do won't work, parents may end up in an exhausting pattern where they make endless suggestions to the child, only for all of them to be rejected, either immediately or later.

Indirect or casual requests may work better.

Control


The need to feel in control is at the heart of PDA.  Control of the environment, control of the emotions of loved ones, anything to make the world a less anxious, more predictable place.  When parents get upset, so does the child, as it's scary, but apparent indifference may lead to cooperation.  Even too much praise can be frightening if it is unusual.

So keeping parents happy may be a priority for them and you can use that to encourage good or helpful behaviour.

Sociability


Children with PDA are often very sociable and charming, they like being around others, and may find it easy to make friends.  But their need to control everything and everyone may mean that these friendships don't last.  For example they may gather a following at the playground because they're great at organising imaginative games.  But the other children may not ask to see your child again.

Structure


Routine and structure may be resisted if it is being imposed by other people.  Mutual agreement may be the only way to achieve everyday things, both at home and in school.

Sanctions and Rewards


Reward charts are a standard behavioural technique for children with autism, and many therapists suggest applying consequences for behaviour that parents decide is undesirable by removing favourite toys or using time out.   Both of these strategies may not work at all with PDA, and just increase levels of anger and resentment.

Obsessions


As well obsessive interests - common when you have a child with autism - PDA children may get obsessed with people.  This may mean that they want to spend as much time as possible with that person, and constantly try to contact them when they are apart, which may annoy the other person and result in them keeping their distance.

Other features


Communications difficulties, up to and including selective mutism; difficult behaviour and volatile moods.

Does any of this sounds familiar?  If so it really is worth finding out more, especially as very different parenting techniques are recommended to help support and reassure children with this condition.


Information on Pathological Demand Avoidance:

National Autistic Society

Steph's Two Girls

Pathological Demand Avoidance Syndrome

PDA Society

PDA Resource







16 comments:

  1. Great post. I think you've highlighted lots of the areas where PDA can differ from autism - particularly imagination an sociability. My gut feeling is that there are loads of children diagnosed with autism and/or challenging behaviour for who PDA would be a much better fit. The strategies work so well if applied correctly, and it's exhausting as it basically means staying one step ahead at all times in order to offer choices that are suitable for all parties. Staying flexible is key. So much more information out there - can I please also signpost www.pdasociety.org.uk and www.pdaresource.com x

    ReplyDelete
    Replies
    1. Thanks so much for your comments Steph, and I have added those extra links to the end of the post too x

      Delete
  2. PDA is not in the DSMV nor the WHO's ICD-10 -- otherwise known as the "official" diagnostic bibles.

    You've described an anxious kid who has clearly been allowed to get away with murder.

    As you're likely aware, something like 1 in 68 kids has been diagnosed with an ASD - so you'd think there's be melting down PDA kids everywhere. Yet folks don't. This suggests it is possible to teach a difficult kid with an ASD to behave like a civilized human being.

    You just can't be bothered and your son suffers terribly as a result!

    ReplyDelete
    Replies
    1. Well actually my son is not suffering at all. He's not got a diagnosis of PDA, and he's currently doing well both at school and at home, without any help from medication.

      Delete
    2. Suzanne you have no idea do you a child in an area he or she can't deal with will mask and cope with it best they can once they are at home in there comfort zone they let there tensions go in a melt downs.
      As they feel save anyone reading her comment who as this ignore it must be an old school teacher who thinks it's parenting skills. But us parents know it's a deeper issue and we do are best to make them happy.

      Delete
    3. Thanks Anonymous and I agree with you

      Delete
  3. Interesting, I didn't know about that condition... It definitely doesn't apply to my son as his biggest difficulty is socialisation. However, I think we tend to put a label or over- diagnose every possible type of "different" behaviour nowadays. I understand it's hard for parents and we all want answers, but sometimes I feel we're just over-analyzing everything. In my opinion, PDA is probably one side of ASD, not present in every child who has the condition, is it a standalone diagnosis? As in, can you have PDA but not be in the autism spectrum?

    ReplyDelete
    Replies
    1. I'm not sure that I can answer your question, but why a PDA diagnosis can be important is because the parenting strategies are different x

      Delete
  4. I've often wondered about PDA and ODD for J because his previous schools claimed they had tried all the 'autism' strategies and they didn't work. Thankfully things are going so well for him at the moment that we've not had to look further into it. But even as a baby he used to get called 'oppositional' and 'contrary' a lot so i think those types of traits have been there all along with him. x

    ReplyDelete
    Replies
    1. Delighted that things are still going well for him x

      Delete
  5. Very interesting post. I have read about pda from reading Steph's blog and can definitely see traits of it on my son. Although we have a diagnosis of ASD/Aspergers many of the strategies don't help with him. He does not respond to sanctions and rewards, only follows routine when it suits and is very charming but cannot maintain friendships. We are getting a support worker who agrees this is not a parenting issue but we are struggling to find a way forward that he will respond to.

    ReplyDelete
    Replies
    1. Thanks Louisa, and good to hear that your support worker is understanding x

      Delete
  6. Such an interesting read. Food for thought. Thank you for sharing. xx

    ReplyDelete