Pathological Demand Avoidance and Autism

What is Pathological Demand Avoidance (PDA)?

Pathological Demand Avoidance (PDA) is a profile of autism where people avoid daily demands, often utilizing ‘social’ strategies to do this. The underlying cause for this avoidance is said to be a high level of anxiety, usually from expectations of demands being placed on them, which can lead to a feeling of not being in control of a situation.

History of PDA

The late developmental psychologist, Elizabeth Newson, first used the term Pathological Demand Avoidance in the 1980s while serving as the director of the Child Development Research Unit at the University of Nottingham.

While observing children at play and interviewing their parents, she first worked with children who were non-communicative but began to see children who had autism symptoms but were socially more adept. As more research on the subject becomes available, the characteristics of the profile continue to change.

The term PDA is not included in the Diagnostic and Statistical Manual of Mental Disorders (DSM5), but it first appeared in an article in 2003, and many conferences on PDA given by the National Autistic Society (UK) have been widely attended since 2011. The UK based Autism Education Trust has been publishing guidelines on PDA and teaching strategies “as part of the national autism standards.” Also called Extreme Demand Avoidance as an alternative term, there is no conclusive or agreed upon definition, but there is agreement with the PDA profile.

Characteristics of PDA

PDA is thought to be relatively uncommon and, according to Professor Newson’s findings, it is not gender specific (although there are no prevalent studies).

PDA is often characterized by some of the following:

A resistance or avoidance of the typical demands of life

When a waiter asks, “Would you like something to eat?” most people respond with their choice of meal, but for people with PDA, this could produce anxiety, needing to make a quick decision. Praise can cause an individual to feel the need to do better the next time. Having to act within a certain amount of time, not knowing the outcome of a situation, wanting to play a game, having to attend a social event, or even simple internal demands  such as knowing one needs to eat or sleep can produce apprehension. This can have the same effect as not wanting to do a chore. The need for control in situations often accompanies these feelings. It is important to note that  someone with PDA might react to a demand in an oppositional way, but they are not being defiant as in the case of Oppositional Defiant Disorder. For example, not wanting to wear a shirt with a tag could be because of their sensory issue not deliberate defiance.

Use of social strategies to avoid those demands

To avoid the typical demands of life, these individuals will use some type of  social distraction. This can range from making excuses, changing the subject, and procrastinating to running away or aggression. The reaction can quickly escalate if the person is pushed rather than being allowed to avoid the demand.

Appearance of social ability without social understanding

While seeming to present as having better conversational skills, social awareness or using more eye contact than others with autism, their “sense of social identity” is lacking and they have difficulty understanding how   communication works or how to process certain social situations. This could mean not being able to understand someone’s tone of voice or having trouble processing verbal communication quickly to keep up with a conversation.

Heightened emotions or excessive mood swings

Anxiety often presents through anger, crying, and other emotions, and not being able to label these, or feeling overwhelmed by them, can cause distress.

Comfortability using role or pretend play

Children with PDA often have great imaginations, and role-playing or taking part in “dress up” activities can be enjoyed by many. For some though, this can extend to extremes, such as taking on different personas for everyday life, in order to avoid demands.

Obsessive behavior that often focuses on people

Often a person with PDA has an interest in a particular subject, wanting to   know everything they can about that topic. Many times, this interest is in another person, focusing on them to try and know and understand all they    can about the person. This can be difficult in a social setting if a child with PDA is showing more attention to one child over the others. It can also feel “smothering” to the person receiving all the focus.

How to Diagnose/Assess for PDA

The DSM5 and other diagnostic manuals do not currently include PDA as part of the autism spectrum. However, an initial autism evaluation can be done by a pediatrician or any doctor who provides neurodevelopmental assessments. Once this is determined, a PDA profile can then be identified. According to the National Autistic Society, UK, this is usually done with assessments from a clinical or educational psychologist, a psychiatrist, speech/language therapists, and occupational therapists (OTs). Having a specific profile that includes the child’s strengths and specific needs is helpful in getting the proper support for home, school and/or work, tailoring this as the individual’s needs change.

What Can Parents Do Once Their Child is Identified as Having PDA?

Courtesy of the PDA society

First, education is key. Parents need to learn as much as they can about PDA, while also considering their child’s personality. There is no “one size fits all” approach. Because the panda bear is sensitive and needs specific accommodations to survive, the PDA Society has chosen the acronym PANDA to explain how to have a tailored approach to this disorder. The letters stand for the following:

P – Pick Battles
A – Anxiety Management
N – Negotiation and Collaboration
D – Disguise and Manage Demands
A – Adaptation

  • Pick Battles – Many parents have heard this term, and it is important in dealing with a child who feels anxiety when they are not in control of their situation. Understanding that your child is not being willful but is responding to their level of anxiety can help immensely. Try to focus on the positive qualities in your child rather than on the unwanted behavior. Explaining why something is happening gives the child some perspective, and if possible, allow for choices or some control of the situation.
  • Anxiety Management – While anxiety is the underlying cause for the avoidance and resistance, trying to manage that anxiety is important. If a child has social or sensory challenges, be aware of the anxiety that presents with these challenges and plan for it. Preparing for an early departure from a crowded or loud event or giving a child seamless socks to wear with their comfortable shoes might lessen the stress. Reducing uncertainty can help alleviate that “fear of the unknown,” but even with the best plan, there still may be emotional outbursts. Handle these like a panic attack, staying calm in the moment and supporting the child throughout the episode.
  • Negotiation and Collaboration – In any relationship, trust is important, but in a situation where a child has anxiety about the unknown, trusting their caregiver is essential. It is important for a parent to remain calm while working together with their child to overcome challenges, negotiating an agreement in a fair way.
  • Disguise and Manage Demands – This might be as simple as making a game out of an everyday event or working alongside your child to do a task. Monitoring your child’s capacity for certain demands and keeping the demands within that level of tolerance can be helpful.
  • Adaptation – Adaptation and flexibility in a variety of situations is key. Allow for extra time and have an alternate plan or a “way out” such as finding a quiet area in a noisy space. Finally, using distraction, role play, and even humor can help alleviate the tension from a situation. Being silly or asking the child, “How do I do this?” can make the demand seem less daunting.

If a child has autism with a PDA profile, it is important to focus on their positive attributes instead of the challenging behavior. By looking for those long-term coping skills rather than a “quick fix” whereby the child complies at that moment, this can lead to a more positive outcome over time.

Finally, whatever behaviors the child exhibits, try not to “take it personally.” They are responding to their own anxiety, not responding personally to their caregiver. Parents should find resources for themselves, either in the way of a support group or some self-help. A parent is better able to handle a difficult situation if they are equipped with knowledge and tools, giving them a better perspective on their child.

From Autism Parenting Magazine - you can read the original article here.

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