When parenting children with autism, it is essential for parents and carers to understand all behavior is a form of communication.
When that behaviour challenges parents and carers it is most often the environment, which includes the people within it, which triggers anxiety and the Fight or Flight response.
Learning to understand your child and adapting the environment for him/her is always preferable and more successful than trying to change or “fix” the child.
Autism and anxiety go hand in hand. Individuals with autism are living in an anxiety inducing world they are constantly trying to make sense of and fit into.
Social communication difficulties, a dislike of change, and sensory processing difficulties mean the autistic individual is living in a permanent state of hyper-vigilance.
All of us experience “demand avoidance” when faced with something we don’t really want to do (like our tax return!). But for some individuals with autism, their demand avoidance can be described as “Pathological.”
PDA was identified by Professor Elizabeth Newson in the 1980’s; however, it has gained considerable traction in recent years.
The main characteristics of PDA as identified by Newson are:
- Resists and avoids the ordinary demands of life
- Uses social strategies as part of avoidance
- Appears sociable but lacks understanding
- Experiences excessive mood swings and impulsivity
- Appears comfortable in role play and pretence
- Displays obsessive behaviour often focussed on other people
Many parents describe a “light bulb moment” when reading about PDA. PDA remains a very controversial topic due to the fact it does not currently feature in either of the diagnostic manuals (DSM and ICD.) Traditional autism strategies are not only ineffective when applied to children with PDA but can actually be damaging.
For an individual with PDA, routine and structure can actually be perceived as a demand, particularly if they are imposed upon him/her. Individuals with PDA thrive on flexibility, novelty, and spontaneity which allows them to retain a sense of freedom and control.
Identification of PDA and correct understanding and support can make a life-changing difference for individuals with PDA and their families. Dr Gloria Dura-Vila is a Consultant Child and Adolescent Psychiatrist and Medical Lead for Autism Spectrum Disorder in Surrey and Borders NHS Foundation Trust. She states:
“Identifying PDA is crucial as I’ve been told on many occasions by parents and teachers that the approaches used with children with a more typical presentation of autism often don’t work and can be counterproductive with those with PDA. Conversely, I have been told on many occasions how the application of ‘PDA friendly strategies’ was, quoting a father I worked with, ‘life transforming’ for his daughter and the whole family. Moreover, developing a detailed description of your child’s ASD will help them develop self-awareness, and understanding their PDA symptoms is part of this.”
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The best way to understand PDA and get an insight into this misunderstood and complex condition is from those who live with it each day.
LK: “If you could sum up your childhood what would you say?
HT: “A sense of ‘Am I in the wrong place?’ upon reaching the age at which I was old enough to question my place in the world.”
LK: “What is the hardest thing about PDA?”
HT: “Nowadays, it really is only other people.”
LK: “What the most important thing for you?”
HT: “Freedom. Freedom is the chief principal of PDA, and with that comes a reduction in anxiety. This makes me a better person and if people can honour that it makes them easier to deal with.”
LK: “Many people ask about education and PDA. Is it possible?”
HT: “Only if the school makes a hell of a lot of adjustments. It’s the square peg and round hole analogy. It’s not the type of school or the methods they use; it’s applying the attitude and developing understanding which is most important.”
LK: “What is the best approach for parents and carers?”
HT: “With parenting, or any relationship, it’s a state of mind and not a set of strategies. You have to relinquish normality, let go of expectations, and expect the unexpected. It is possible to enjoy it. The parents who enjoy it the most are the ones who have tapped into it. Everyone is on the journey together. PDA parenting does not rest upon a particular set of strategies or methods; PDA parenting becomes possible when the parent accepts the fact that the conventional trajectory is a no-go zone for their PDA child, and that meeting their child on their level and flowing contiguously alongside them is more likely to help the child to thrive. Trust your child and honour their path and cushion them when they fall. It’s like playing poo sticks—let the stick find its own way down the stream and expect the stick to hit the bank occasionally. If the stick gets stuck, gently pick it up and move it back into the current before standing aside again to let the stick do its thing. Following the stick and monitoring its progress/safety is okay. Needless interventions are not.”
LK: “How can you marry the PDA approach within a family with neuro-typical siblings?”
HT: “The more the siblings understand the better. Equity over equality—highlight how equity can be fair. PDA children are hypersensitive and may demand more attention from either parent, which may lead to siblings accusing the PDA child of having special treatment. I can’t stress the importance of having a discussion with the whole family the moment accusations of unfairness are made by siblings.”
LK: “What helps you most as an adult?”
HT: “Trust, freedom, and autonomy—combining what I am good at and what I am passionate about.”
LK: “What about rewards and sanctions? Can they help?”
HT: “NO! Rewards and sanctions don’t work as nothing is important as freedom and control. Giving this up is akin to a parent giving up their child—the thought is impossible to digest—even for a £1,000.000! Parents and carers should use spontaneous rewards that naturally flow from positive processing. The experience in itself has to be rewarding. The rewards should flow freely from the activity. For example, going to get an ice cream at the end of a lovely afternoon because it’s part of a lovely afternoon, NOT ‘Because you have been good today you can have an ice cream.’”
Most important of all
When parenting children with PDA parents and carers must always remember that it is anxiety that is driving the demand avoidance. It is not a choice. Consider the anxiety bucket analogy. The neurotypical anxiety bucket has holes in the bottom, so throughout the day neuro-typical children are able to process anxiety and stress and it trickles away through the holes.
For the child with PDA there are no holes, so the anxiety just builds up and up until the bucket is full and there is no room for anything else. It’s also important to remember that for a child with PDA the bucket is never empty. It is essential that parents and carers think about what fills the bucket and what can help put a hole in it. If you can minimise input and maximise output, you reduce the risk of the bucket filling up.
Most importantly, remember there is no such thing as an overreaction for a child with autism or PDA. All behaviour is demonstrative of how your child is feeling.
This article was featured in Issue 103 – Supporting Emotional Needs