Guest Article By Diane Gould, Licensed Clinical Social Worker and Board Certified Behavior Analyst
Have you ever met a child who did not fit into one of the diagnostic categories we use for struggling kids? Maybe you have one of those. The child may fit some of the criteria for autism, but they make eye contact, are imaginative, and seek social interaction, so they don’t check the boxes for autism and receive a diagnosis. They do have sensory issues, seek control, and display rigidity. They don’t do what they are told to do at home, which includes even basic things like brushing their teeth or taking a shower. The child probably has a list of diagnoses such as ADHD, Anxiety, and maybe even Oppositional Defiant Disorder or Disruptive Mood Dysregulation Disorder. The parents have tried everything, but challenging behavior occurs daily at home. At school, he or she may be charming, an angel, and the teachers can’t believe there is trouble at home. They tell the parents to be more consistent, set firmer boundaries, and use rewards and consequences.
In other countries, such as the UK and Australia, these children are diagnosed with the Pathological Demand Avoidance (PDA) profile of autism. Awareness is spreading across the globe but only came to the U.S. in an organized way in March 2020 when the first PDA workshop was held in Chicago and PDA North America was established. Now American families are having lightbulb moments when they hear about PDA. They finally have a diagnosis that fits their child, which explains so much. It is validating to understand why the traditional parenting and behavioral approaches did not help their child. Now the goal is to get educators and other professionals to become knowledgeable about PDA to support these families.
Characteristics of the PDA Autism Profile
- Resisting and avoiding the ordinary demands of life
- Appearing sociable, but lacking in-depth understanding
- Excessive mood swings and impulsivity
- Comfortable in role play and pretend, sometimes to an extreme extent
- Obsessive behavior, often focused on people, either loving or loathing them
- Bossy, controlling, domineering, and overbearing
- Often more comfortable with adults than peers
- Often hypersensitive to others’ voices/tones, facial expressions (may absorb others emotions)
- Acting overly familiar at times with adults, authority figures, and peers
- Possibly adopting the persona of others, i.e. teachers, staff
- Possibly assuming a role in order to comply or avoid
- Sometimes having a panic attack or meltdown if highly anxious – these may result in aggression towards others
- Possibly behaving very differently at school, college, or work versus home (masking)
- Unable to follow routines if set by others
Parenting Strategies for Children with PDA
- Offer positive experiences that flow into each other. Reward systems are ineffective as the individual with PDA feels out of control. Planned rewards are perceived as a demand.
- Use humor, which can be very effective at diffusing situations.
- Depersonalize rules: “It’s a Health and Safety Rule,” or, “It’s the law,” is better than, “Because it’s dangerous,” or, “Because I say so.”
- Show empathy and talk about what helps, “I know you hate cleaning your room, I used to hate cleaning mine, how about we to it together?”
- Use challenges: “I bet you can’t………” or, “ I will race you…….”
- Allow the individual to plan their own routines.
- Offer a choice that YOU are still in control of: “Do you want to write your name first, or the date?” or, “Do you want to wear your brown shoes or your gym shoes?”
- Praise indirectly rather than directly.
- Reduce pressures, i.e., allow extra time, pick your battles.
- Give demands indirectly.
- Give the individual the chance to help, demonstrate their strengths, adopt responsibilities, etc.
- Have an exit strategy or code word.
- Partner and collaborate.
- Remind yourself that it is a matter of can’t rather than won’t.
It is possible for parents and professionals to support someone who fits the PDA profile, and we are available to help. We are just at the start of this movement for understanding and recognition for these complicated kids.
For more information, contact:
Founder PDA North America and Owner of Diane Gould Therapy
Diane Gould is a Licensed Clinical Social Worker and also a Board Certified Behavior Analyst who has focused her practice in supporting autistic individuals. She has a full time private practice in suburban Chicago and is the founder of PDA North America. In her practice, she serves neurodivergent children and adults and their families. She feels privileged to be invited into the lives of her clients where she provides support and guidance through life’s transitions. Ms. Gould has been able to celebrate successes and has been able to help clients grieve when there has been a loss of a loved one. She has provided support during family crises.