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:
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....
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.
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.
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.
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.
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.
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.
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