Summary
PDA is a distinct profile of autism identified by features such as:
• Resisting and avoiding ordinary demands: this can include everyday tasks and instructions.
• Appearing sociable but lacking depth in interactions: Children with PDA might appear outgoing but struggle with social nuances.
• Excessive mood swings and impulsivity: Often reacting strongly to perceived pressures.
• Comfort in role-play and pretending: Using imagination to escape demands.
We look at things that can help
“I have been told my child is demand avoidant…”
Hearing that your child may have Pathological Demand Avoidance (PDA) can be both confusing and overwhelming. PDA is a profile associated with the autism spectrum, characterised by extreme avoidance of everyday demands and expectations due to high anxiety. This blog written by Melissa Skana, our Assistant EP, aims to provide insight into what PDA is, how it differs from other forms of autism, and practical strategies for parents and educators.
What is PDA?
PDA is a distinct profile of autism identified by features such as:
- Resisting and avoiding ordinary demands: this can include everyday tasks and instructions.
- Appearing sociable but lacking depth in interactions: Children with PDA might appear outgoing but struggle with social nuances.
- Excessive mood swings and impulsivity: Often reacting strongly to perceived pressures.
- Comfort in role-play and pretending: Using imagination to escape demands.
While PDA shares some characteristics with other autism profiles, the key difference lies in the intensity and pervasiveness of demand avoidance. Traditional strategies often fail because they don’t address the underlying anxiety that triggers demand avoidance in PDA children (Milton, 2012).
Kristy Forbes, an autistic advocate and consultant, has provided valuable insights into PDA through her lived experience and professional work. Forbes emphasises the importance of understanding the sensory and emotional experiences of children with PDA. She highlights that:
- Children with PDA often experience heightened sensory sensitivities, which can increase their anxiety and avoidance behaviours. Recognising and accommodating these sensitivities can help reduce stress.
- Emotional connection and validation are crucial: Forbes advocates for approaches that build strong emotional connections and validate the child’s feelings and experiences. This can create a sense of safety and trust, making it easier for the child to engage in activities without feeling overwhelmed by demands.
- Autonomy and choice are key: Forbes stresses the importance of providing children with PDA as much autonomy and choice as possible. This can include letting them decide the order of activities, choosing their work environment, and having input into their learning process.
Reducing Demands: A Different Approach
Understanding the difference
Traditional autism strategies often involve structured routines, visual schedules, and explicit instructions. For example, many schools use “now and next” boards and timetables to help autistic children understand their day.
However, for children with PDA, these tools can sometimes exacerbate anxiety rather than alleviate it (O’Nions et al., 2018).
Why traditional approaches might not work
- Rigid schedules increase anxiety: Children with PDA often find comfort in feeling in control. Strict timetables can make them feel trapped and pressured (Christie, 2007).
- Direct instructions provoke resistance: Clear and direct demands can trigger avoidance behaviours as the child feels threatened by the loss of autonomy (Milton, 2012).
Do’s and Don’ts for Supporting Children with PDA:
| Do’s | Don’ts |
|---|---|
| Do Build trust and rapport: Establish a trusting relationship by showing understanding, empathy, and respect for the child’s feelings and perspectives. | Don’t use rigid schedules: Avoid strict and inflexible routines that can increase anxiety and a sense of loss of control. |
| Do offer choices: Provide options to help the child feel a sense of control. For example, “would you like to do your homework before or after dinner?” | Don’t give direct commands: Direct demands can provoke resistance. Instead, use suggestions or indirect language. |
| Do use flexible and negotiable schedules: Allow children to have input into their day and offer choices whenever possible. Replace “now and next” boards with more fluid and less visually structured formats. For example, a list of options rather than a strict sequence. | Don’t rely solely on visual schedules: Traditional “now and next” boards might increase pressure. Use them flexibly if at all. |
| Do present tasks as games or challenges: Make activities fun and engaging to reduce their perception of them as demands. | Don’t insist on participation: Avoid forcing the child to participate in activities as it can heighten anxiety and resistance. |
| Do encourage self-directed learning: Allow the child to pursue their interests and take breaks as needed. | Don’t expect immediate compliance: Understand that compliance may take time and be patient with gradual progress. |
| Do involve the child in planning: Collaborate on creating routines, especially for activities like bedtime, to give the child a sense of ownership. | Don’t create pressure around transitions: Avoid abrupt transitions. Use gradual and calm signals to indicate changes, such as dimming the lights to indicate it’s time to wind down. |
| Do focus on comfort and relaxation: For bedtime, create a calming environment with activities the child finds relaxing, like reading or listening to music. | Don’t make bedtime a rigid process: A strict bedtime routine can feel like a demand. Flexibility is key. |
| Do use positive reinforcement: Celebrate small achievements and offer praise for effort, to encourage positive behaviour. | Don’t use punishment or negative reinforcement: This can increase anxiety and worsen demand avoidance behaviours. |
| Do provide indirect instructions: Use phrases like “I wonder if anyone would help with…” to reduce the pressure of direct demands. | Don’t engage in power struggles: Trying to enforce compliance through confrontation can escalate resistance and anxiety. |
| Do acknowledge and validate feelings: Recognise and empathise with the child’semotions to help them feel understood and supported. | Don’t dismiss or minimise anxiety: Ignoring or downplaying the child’s anxiety can lead to increased stress and resistance. |
Understanding and supporting a child with PDA requires a shift from traditional autism strategies to more flexible, trust-based approaches. By reducing perceived demands and allowing for greater autonomy, parents and educators can help children with PDA manage their anxiety and thrive in their environments. By staying informed and adaptable, we can better support our children and students, helping them navigate their unique challenges with confidence and comfort.
Resources:
https://www.autism.org.uk/advice-and-guidance/topics/behaviour/demand-avoidance
https://www.kristyforbes.com.au
References:
Christie, P. (2007). The distinctive clinical and educational needs of children with pathological demand avoidance syndrome: guidelines for good practice. Good Autism Practice (GAP), 8(1), 3-11.
Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887.
Newson, E. L. M. K., Le Marechal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88(7), 595-600.
O’Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014). Pathological demand avoidance: Exploring the behavioural profile. Autism, 18(5), 538-544.\\ Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887.
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