What I Cannot or Will Not Do: There is a Difference

Does a PDA diagnosis support those on the spectrum or build more separation?

I sat next to two young moms at a cafe, each with a child on the spectrum. Both children had been diagnosed with Pathological Demand Avoidance (PDA), and both moms were concerned about the challenges they faced at school.

After introducing myself to them, we talked about advocating for their children’s needs.

What is PDA?

PDA is the obsessive resistance to demands. The term, coined in the 1980s by Dr. Elizabeth Newsome, was adopted in the UK but is still being considered in the US.

Those on the spectrum are said to have executive functioning differences and sensory sensitivities. These challenges can impede their ability to follow through and engage in new and different actions and activities.

To me, PDA sounds like the way we already describe those on the spectrum when they are stuck, have difficulty transitioning, or do not understand what is required. So, why do we need yet another diagnosis that sets the child up for negativity?

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If a diagnosis of PDA can help parents, teachers, or therapists of those with autism to build understanding and find new ways to support them and help them live their best lives, then okay.

However, if it creates separation, perhaps we just build better support systems, implement different strategies, and look for the positive side of a diagnosis.

Understanding about PDA

Perhaps we just need to understand that PDA is a profile of autism where anxiety or losing control drives extreme avoidance of everyday demands and behaviors. It’s not about defiance or rebellion.

We must learn to reduce pressure, offer choices, and use playful approaches to help them manage their PDA.

Finally, we need to continue to educate others about PDA to foster empathy and more support for the individual.

Currently, PDA is comparatively rare, and more females with autism display PDA features than males. There are parallels between PDA features and other descriptions such as ODD (Oppositional Defiant Disorder) and CD (Conduct Disorder). There are important differences too.

One of the most essential differences is that children and young people with PDA tend to avoid more mundane things, whereas children with ODD are oppositional about bigger demands. Children with ODD tend to respond better to behavioral rewards and sanctions than children with PDA.

Some strategies

What are some ways to help these kiddos with PDA? Here are some suggestions:

Identify their anxiety

A child with PDA needs to feel in control and has behaviors underpinned by anxiety. Anxiety can be expressed in many ways:

avoidance or withdrawing
fidgeting, rocking, skin picking, or repetitive actions
anger, laughing, or crying
shouting or lashing out at others, swearing, or throwing things
remaining silent
feeling restless or bored
running off or hiding
masking
tics
obsessing

An anxiety curve model shows the levels of anxiety for PDA with autism.

Identify language processing difficulties

Some individuals may have good expressive language but cannot process verbal communication quickly enough during conversations. They may be confused by non-specific questions or instructions.

An individual with autism may not understand the ‘unwritten rules’ used in social interactions. They may not be aware of those nonverbal communications such as the tone of a person’s voice or the body language they use.

Identify confusion about emotions

They may feel overwhelmed by or unable to understand or accurately ‘label’ their own or others’ emotions.

Identify uncertainty struggles

They may struggle with not knowing how things might ‘pan out,’ what might be expected of them, where a situation might lead, when a problem might end, and whether they can cope with whatever may come.

Identify sensory overload

They may have heightened sensory perception, which can contribute to anxiety, overload, and avoidance.

Caregivers adjusting their mindsets

Sometimes, parents and caregivers must find a new way to view the behavior. Here are some ways to do that:

Look beyond surface behaviors for a deeper reason.
Base their mom and kiddo relationship on collaboration and respect.
Keep calm.
Don’t take things personally.
Model desired behaviors.
Pick battles.
Treat every day as a fresh start.
Focus on coping rather than compliance.
Be more flexible.
See the positives while supporting children’s challenges.

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Other strategies

Other strategies can also help:

Address environment challenges

Those on the spectrum thrive in the right environment, which includes consistent boundaries, rewards, consequences, praise, and an approach using negotiation, collaboration, and flexibility.

Balance tolerance and demands

Their ability to cope with demands will vary daily and hourly, so control the ‘input’ of demands accordingly and build in plenty of ‘downtime’ to allow anxiety to lessen and tolerance levels to replenish.

Agree on non-negotiable boundaries

These will vary from child to child. For some, nonnegotiable boundaries (like basic health and safety requirements or those relating to siblings) may be needed when anxiety is very high.

Families should agree on these boundaries, discussing why they are in place. This will help the child follow them. Parents may need to use other helpful approaches to enforce the boundaries to avoid aggravating the situation.

Allow more time

Build in plenty of time, like setting alarms earlier on school mornings. Always try to plan for and anticipate potential challenges, allowing flexibility to accommodate fluctuating anxiety levels.

Have an exit strategy

Extracting yourself from a situation can help reduce anxiety. You might agree on a quiet zone where the child can retreat to or provide reassurance that something can be tried again tomorrow if not today.

Reduce the perception of demands

Changing the phraseology, tone, and language can benefit the child. For example, rephrasing words to talk about an object rather than a person can be extremely helpful.

For instance, you might tell the child “The pajamas are on the bed; I’m here to help,” rather than “You need to get dressed for bed now.”

Similarly, phrases like “I wonder whether …” or “Let’s see if …” and those that give choices like “Maybe we could …” or “A possible idea could be ….” all reduce the perception of demands.

Likewise, instead of saying “no,” “don’t,” or “you can’t,” use different words. For example: “I’m afraid it’s not possible right now.”

Use indirect communication

Indirect communication includes physical prompts (tapping shoes instead of saying, “Please put your shoes on”) or visual prompts (pictures or checklists).

The order in which things are done should provide an element of choice and control rather than a more formal “first this, then that” approach.

Sticky notes or communicating via instant messenger apps can work well.

Distract or turn things into a game

Focus on something other than the demand. For example, say, “Let’s see who can name all the colors of each piece of clothing” when getting dressed or “Who can sing the next line of the song” while getting into the bath.

Use humor

Humor is a great way to make everyone feel more relaxed and reduce the perception of demands.

Ask for help

Ask your child to help you with something you “can’t remember” or “don’t know” how to do as an indirect way of making a demand.

Offer choices

Offering a child limited choices gives them some control while the parent is still in charge. For example, you might ask, “Would you like to have a bath at 7:00 or 8:00 tonight?” You might also designate a pantry or refrigerator shelf to store healthy snack options. Then, you can allow your child to choose any items from that space.

Support sensory needs

Individuals may be hyper-sensitive (avoiding) or hypo-sensitive (being drawn to more of) certain sensory experiences:

The five senses of sight, hearing, oral, smell, and touch
The senses relating to balance or movement
The senses regarding how your body relates to its surroundings (proprioception)
The senses dealing with hunger, thirst, pain, or toileting (interoception)

An individual can experience hyper- and hyposensitivity regarding the same sense. For instance, someone may enjoy the sound of their own voice or choice of music, but they find others’ or background noises intolerable.

Depending on anxiety levels, illness, surroundings, etc, the level of a child’s sensory sensitivity can vary. These items are helpful:

Chewy toys for oral sensory input
Headphones to eliminate noise or play a favorite song or audiobook
Scented objects like a candle, soap, pillow, or perfumed handkerchief for unfamiliar or unpleasant smells
Deep pressure items such as a weighted blanket or asking before hugging for touch sensitivities
Sun- or tinted glasses for oversensitivity to light
Packed lunches with preferred food or drink items for issues with food avoidance or textures
Movement items such as a scooter, trampoline, bicycle, or an open area to run for those who seek plenty of motion
Rough and tumble play, spinning, or rocking toys for those with proprioception needs

These children often need support with social skills and language processing. A speech-language pathologist can help the child with communication and interaction. Other strategies are also helpful:

Allow extra processing time. This will help the child understand what was said and determine how to respond. After a statement or request, count to five slowly in your head.
Chunk questions or requests. Break your requests or questions into smaller parts, allowing time for your child to respond to each part.
Be clear and precise while being indirect. For example, state, “I don’t remember where the blue cups are that go on the table. Can you help me get them and put them by the plates?”
Role play. This activity can help individuals see situations from another’s perspective and understand how actions can affect another person’s feelings in a relationship.
Use TV, books, and gaming. These pastimes can help children learn about emotions, relationships, and social dynamics, indirectly enabling them to develop deeper understanding and skills.
Recognize and help regulate emotions. While children are young, the adults around them must be very vigilant in spotting the signs that anxiety is escalating. As children grow older and their emotional intelligence develops, they may be able to recognize their emotions and deploy their coping skills more effectively.

Always provide support

Support each child’s emotional well-being by focusing on their positive qualities and supporting any areas of difficulty. Support them with the things they are interested in rather than trying to impose on them what you feel they should be doing. Finally, let them know you love and value them for who they are and that it’s okay to be different.

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Reference:

https://pmc.ncbi.nlm.nih.gov/articles/PMC4820467/

Resources:

posterguide_9.25.pdf

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What I Cannot or Will Not Do: There is a Difference

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Understanding about PDA