Have you heard of PDA (Pathological Demand Avoidance)? What exactly is it? Is it a type of autism? Might your child have it? What strategies can parents use to help their children? Can it be diagnosed? Is it important to have a PDA diagnosis?
Even just ten years ago many people hadn’t heard of PDA. Pathological Demand Avoidance, in the grand scale of things, is pretty new. PDA was first mentioned by Professor Elizabeth Newson in the 1980s, to describe the profile of a group of children she had seen for assessment. It didn’t appear in a medical journal until 2003.
You will still find many people, even professionals and people working in the autism field, who have never heard of it. Some professionals have heard of it, some will diagnose it, but many still insist it doesn’t exist. Any parent / carer of a child with PDA will tell you it definitely does exist, and it is incredibly important for their child that it is recognised and acknowledged.
What is PDA?
According to The PDA Society’s website PDA means that “individuals share autistic characteristics but also:
- have a need for control which is often anxiety related,
- are driven to avoid everyday demands and expectations (including things that they want to do or enjoy) to an extreme extent,
- tend to use approaches that are ‘social in nature’ in order to avoid demands and
- present with many of the ‘key features’ of PDA rather than just one or two.”
Children with PDA are often the ones who struggle to get an autism diagnosis and fall through the net, being written off at school or home as a ‘problem child’. Their extreme anxiety, refusal to comply with adults and tendency to try to regain control of their surroundings through any means available to them is often mistaken for behavioural problems, or ODD (Oppositional Defiance Disorder).
When I realised my son may be autistic six years ago, I spent a lot of time researching autism and its common traits; getting more and more confused and disheartened because both professionals and people close to us insisted my son couldn’t possibly be autistic. Although his sensory needs were off the chart, his anxiety so high he was threatening suicide at seven years old, although his meltdowns were epic; he had too many friends, he was too articulate and charming, he didn’t avoid eye contact enough to be considered autistic. Then I stumbled across the PDA Society’s website and something clicked and fell into place. This was my son all over.
Can PDA be diagnosed?
Although it is not defined and recognised in the DSM-5 as a subtype of autism (which means many areas of the UK will not diagnose it as a stand-alone condition), more research is being done on PDA every year, and more and more professionals such as therapists, teachers and doctors are beginning to acknowledge it.
It can be diagnosed, but in most places it won’t be under the NHS. But, many NHS regions will give a diagnosis of Autistic Spectrum Condition (ASC) with demand avoidant traits nowadays. If you want to pursue an official PDA diagnosis, and you haven’t won the postcode lottery of living in an area where it is acknowledged and diagnosed, you may wish to pay for a private assessment for your child (see options below).
Why is a diagnosis important?
As mentioned above, people with PDA often present very differently to those with other autistic spectrum conditions. Strategies to help and support young autistic people in education, at home and in the community that usually work well for most autistics may not work for your child if they fit the PDA profile.
For example, my son responds negatively to rules imposed on him. It is accepted knowledge that autistic children respond well to adults around them making clear rules and boundaries; for example, ‘you must brush your teeth before bed’. My son sees such rules as a demand. Hence, it is very important for the people around your child to know that they have a PDA profile, and an official diagnosis obviously helps massively with this.
After two years of fighting for an autism diagnosis for my son because he did not fit the criteria for the more common profile of Aspergers-type autism, I managed to get him a diagnosis of ASC with Demand Avoidant Traits. If your child already has a diagnosis of ASC but you think they may have a PDA type autism profile you may find it is enough to mention to professionals involved in their care that they are demand avoidant, and need the usual strategies used with autistic children to be adapted to meet their PDA-driven needs.
What strategies can help?
Children with PDA tend not to respond to conventional parenting, teaching or support approaches. I know when I first discovered PDA and started implementing PDA strategies at home they felt like the opposite of what ‘good parenting’ traditionally looks like. I still often find myself explaining to people why I have to parent the way I do.
Here are some ideas for successful PDA strategies:
- Tailor your plans to suit your child’s mood and frame of mind (where possible).
- Pick your battles!
- Decide on non-negotiable boundaries and when discussing these with your child explain why; they are more likely to respond to clear reasoning than a rule that they don’t understand.
- Be consistent with boundaries and rewards/consequences – uncertainty over this can cause anxiety for the child and trigger behaviour. It is important that others who regularly care for your child follow these as well.
- Plan ahead and try to minimise uncertainty.
For example, telling my son he must brush his teeth before bed is a surefire way of ensuring he will never brush his teeth before bed. He needs an element of control over every rule and boundary set, it needs to be agreed between him and me or his carer/teacher before he will stick to it. So, if I wanted to ensure he started brushing his teeth every night, I would have to negotiate with him, helping him to understand why it is important, asking his opinion of a good time to brush his teeth, then agreeing on the new rule together.
I may ask him ‘do you think it’s a good time to brush your teeth?’ or, ‘what do you want to do first, brush your teeth or put on your pyjamas?’ Or, I may say, ‘let’s go brush our teeth together.’ In the PDA household phrases like ‘you must…’, ‘do it now’ or ‘I insist you…’, even if ‘please’ is added, are dirty words. It is all about negotiation, suggestion, patience (a lot of patience) and choosing your battles. At the end of the day, if my son does not brush his teeth for a few days no one is going to die.
Obviously, non negotiable rules are always needed for children, like, ‘never put a fork in a plug socket’, but if you have a PDA child, keep these to a minimum, reserved only for safety and life-or-death situations. When she was looking after my son once, my sister messaged me because he was refusing to wear his coat, even though she had told him it was non-negotiable. My reply, ‘barely anything is non-negotiable’; this has become my mantra for when days are tough.
Caring for a PDA child is hard work and it is a huge learning curve. Also, it is often a massive fight to get people around us to recognise and accept it. Luckily, every year, there is more and more support and information available about PDA. Here is a list of resources if you want to learn more:
- The National Autistic Society’s page on What is PDA?
- The PDA Society has an excellent website with lots of helpful strategies
- The first book written about PDA ‘Understanding Pathological Demand Avoidance Syndrome in Children’
- A free booklet, Understanding the Pathological Demand Avoidance Profile of Autism
Help for those teaching or home educating children with PDA:
- PDA booklet from Limpsfield Grange School
- Educational and handling guidelines for children with PDA from The Elizabeth Newson Centre
- Pathological Demand Avoidance from The Good Schools Guide
Two excellent blogs about living with PDA:
Options for private diagnosis:
- The PDA Society website has a list of current private diagnostic options for children.
- Dr Hilary Dyer also offers private assessments