Pathological Demand Avoidance for Autism (PDA)

What is Pathological Demand Avoidance?

Pathological Demand Avoidance is a behavior profile seen in people with autism. A person with this trait refuses to follow demands that can be considered part of daily life such as going to school, eating dinner, or going to bed. This uncooperativeness is said to be based on anxiety and the need for control.

Pathological Demand Avoidance for Autism (PDA) https://www.autismparentingmagazine.com/pathological-demand-avoidance-autism

The late developmental psychologist Elizabeth Newson first coined the term Pathological Demand Avoidance in the 1980s when she described resistant behavior seen in children with autism.

In her work with children on the spectrum at the University of Nottingham’s Child Development Research Unit, Dr. Newson had to put children with PDA symptoms on a separate category from those with classic autism symptoms. Although she mostly worked with non-verbal children on the spectrum, other verbal children were brought in who showed signs of PDA.

“To begin with I’d describe these children as ‘non-typical autistic’. As time went on, however, I began to realize that although they were not typical of autism, they were typical of each other,” Dr. Newson told The Independent. “By the time I had eight children who fitted this pattern, I began to think I might have another syndrome. I now have 150 PDA children on my database,” she added.

To date, PDA is not included in the DSM-5 but is widely recognized by developmental practitioners. There is a growing body of research that supports its validity as part of autism’s many qualities.

Core features of PDA

Demand avoidance is common among young children, but PDA is an extreme behavior often seen in children with autism.

The primary features of Pathological Demand Avoidance are:

  • Unusual resistance to normal demands
  • Ability to use social techniques to avoid demands
  • Has the outside appearance of being sociable but lacks depth or understanding
  • Mood can shift quickly (ex: affectionate to aggressive)
  • Loves to play pretend
  • Obsessed with certain activities and/or people

These characteristics of PDA can seem like a child being stubborn and difficult for someone who is not aware of the existence of PDA.

In a 2002 interview with The Independent, Dr. Newson described what children with PDA are like. “They are often governed by obsessions. The predominant obsession is avoidance of demands placed on them. Even the most ordinary requests like getting into a car may throw them into panic,” she said.

In the same article, Fran Mitchell, parent to seven-year-old Vicky who was diagnosed with PDA when she was four, described her daughter’s behavior. She said that getting her in the car to go somewhere was always a challenge. “She’ll say, ‘I can’t at the moment. I’ve got to do something or other’ or ‘I’m poorly. I’ve got tummy ache. I need to go to the toilet,’” Mitchell said.

Parents, teachers, and caregivers often describe pathological demand avoidance symptoms as the child being uncooperative, disrespectful, manipulative, and obsessive. Because PDA is not a known condition, the behavior is attributed to ineffective parenting, which can be difficult for parents who struggle with PDA behavior on a daily basis.

What causes PDA?

PDA, as a subtype of autism, follows the current state of uncertainty when it comes to identifying the cause. This means that the cause of PDA is still being investigated. There is no known cause for PDA in the same way that there is no single known cause for autism.

The consensus is that autism is linked to several factors that affect brain development. This includes both genetic and physical factors. What is certain, however, is that autism, and therefore PDA, is not caused by external factors like a person’s upbringing or socio-economic conditions.

Who is affected by PDA?

The PDA Society reports that PDA behavior is seen on both genders in equal proportion. It also affects people from all races and social backgrounds.

What are the differences between learners with PDA and autistic spectrum disorder?

There are some similarities and differences in people with classic autism symptoms from those with PDA. While demand avoidance is seen in all children including those with autism, children with PDA are classified as such because of the extreme nature and consistency in refusing demands.

Here are some differences between those with typical autism symptoms from those with PDA:

  • Demand avoidance in PDA is social rather than ignoring or withdrawing (saying “no,” and running away or hiding) which is seen in other children on the spectrum.
  • Children with PDA refuse demands that are not unpleasant and are sometimes things that they want to do as compared to typical ASD behavior when they refuse to do activities that are unpleasant or unfamiliar to them.
  • Children with PDA are often verbal and have better social and communication skills than those with typical ASD.
  • Children with PDA are better at having appropriate eye contact than other children on the spectrum.
  • Obsessions and inclinations for children with PDA appear to be more social in nature. These can be a fictional or real person and the obsession is usually based on emotion (love or hate).

Getting an assessment for PDA

Pathological Demand Avoidance is best identified during a diagnostic assessment for autism. This involves interviews with a developmental expert, clinical and psychological tests, as well as physical tests to rule out any underlying issues that might affect behavior.

However, there are a few difficulties in the utility of seeking a PDA diagnosis. This article from New Zealand describes the many challenges that families dealing with PDA face today. They are:

  • Because most people with PDA are verbal and are more socially adept than other children on the spectrum, diagnosis may not happen until they are of school age.
  • PDA can also be misdiagnosed as other similar conditions (mood disorder, Oppositional Defiant Disorder). As a result, the prescribed treatment fails to correct or alleviate the behavior.
  • PDA is not widely known among medical professionals, especially in the United States. In the UK, PDA is considered a symptom of possible autism under The National Institute of Care and Excellence (NICE) Pathways guidelines.

There are many cases wherein parents present PDA as a possible diagnosis but are dismissed due to the lack of evidence-based studies about the condition. If you are a parent or primary caregiver of a child who you suspect might have PDA, it is best to consult with a medical professional and give detailed information about your child’s behavior and how it fits the PDA profile.

The key is to find the right professional who is open-minded and willing to do research on emerging studies in the field of autism. When you are successful in doing this, then you can start the right Pathological Demand Avoidance treatment for your child.

The PDA Society has an online resource that acts as a Pathological Demand Avoidance checklist. Note that this resource called The Extreme Demand Avoidance Questionnaire is used for research purposes only and should not be used as a diagnostic tool.

How to treat Pathological Demand Avoidance

Pathological Demand Avoidance is a relatively new subtype of autism and as such there are no established methods of treatment at this time.

The PDA Society offers free online resources for parents to carry out Pathological Demand Avoidance strategies which can be done at home. Some tips included in the resources are the following:

Look under the surface

PDA behavior is triggered by factors related to anxiety and the need for control. Dealing with the triggers can help ease the tension rather than simply responding to the behavior itself.

Equal relationship between child and parent

Children with PDA thrive more if they are allowed a little freedom in their activities. Parents can take a more collaborative approach as opposed to imposing hard rules when making a demand.

Don’t take it personally

Parents can sometimes feel like their child is purposefully trying to hurt them. This is not the case with children with PDA. Understand that they can’t help avoiding demands and it is their way of dealing with the overwhelming need for control.

Choose your battles

Have some flexibility when the situation calls for it. When in doubt, ask yourself if something is worth your child throwing a fit over. This does not mean that boundaries should be nonexistent. After providing leniency, remind your child of the fundamental rules and why they are in place.

Use natural rewards and consequences

Natural rewards and consequences are the logical results of positive behavior. For instance, your child did his/her homework, so as a reward, he/she has more time to play. You can make the reward known to your child by saying, “Because you did your homework, you have more time to play!”

Use indirect commands

Instead of saying, “Put on your shoes,” say something less imposing (and more fun) like, “Can you show me how you put on your shoes?”

Offer limited choices

It’s great to give your child choices but it shouldn’t be too broad. Instead of saying, “What color shirt do you want to wear today?” you can say, “Do you want to wear the red or orange shirt?”

Use role play

You can use a favorite stuffed toy or pretend to be your child’s favorite character and make the request. Saying something like, “Fred the Dinosaur says it’s time to brush your teeth,” can be more effective than simply asking him/her to brush his/her teeth.

Keep your voice calm

Children with PDA are already anxious most of the time, so it’s important not to add to this by keeping your voice calm and even when making demands.

Raising a child with autism and PDA is a unique challenge but not impossible to overcome. With the steady rise in popularity, the future of PDA and those who are touched by it remain hopeful and full of promise.

References:

Pathological Demand Avoidance – Part of the Autism Spectrum. Retrieved from: https://www.pdasociety.org.uk/what-is-PDA/about-pda

Understanding Pathological Demand Avoidance (PDA). Retrieved from: https://www.priorychildrensservices.co.uk/news-blogs/understanding-pathological-demand-avoidance-pda/

What is pathological demand avoidance (PDA)? Retrieved from: https://www.autism.org.uk/about/what-is/pda.aspx

PDA Peer-reviewed articles – The PDA Society. Retrieved from: https://www.pdasociety.org.uk/resources/published-articles

PDA Syndrome: We Thought She Was Naughty, Turns Out She Was Ill. 28 July 2002. Retrieved from: https://www.independent.co.uk/life-style/health-and-families/health-news/pda-syndrome-we-thought-she-was-naughty-it-turned-out-she-was-ill-186397.html

Pathological Demand Avoidance Syndrome: Some thoughts prompted by a proposed new diagnosis. 2016 February. Retrieved from: https://www.altogetherautism.org.nz/pathological-demand-avoidance-syndrome-thoughts-prompted-proposed-new-diagnosis/

Extreme demand avoidance questionnaire (EDA-Q). Retrieved from: https://www.pdasociety.org.uk/resources/extreme-demand-avoidance-questionnaire

Autism Parenting Magazine tries to deliver honest, unbiased reviews, resources, and advice, but please note that due to the variety of capabilities of people on the spectrum, information cannot be guaranteed by the magazine or its writers. Medical content, including but not limited to, text, graphics, images, and other material contained within is never intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician with any questions you may have regarding a medical condition and never disregard professional medical advice or delay in seeking it because of something you have read within.

Kim Barloso

    Kim Barloso

    Kim Barloso is a professional researcher and writer for Autism Parenting Magazine who examines the most recent information regarding autism spectrum disorders. A graduate of the University of Santo Tomas, she lives in the Philippines with her two children, one of whom has autism.

  • Avatar Racquel says:

    this article was very helpful. Thank you!

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