If your child has already received an Autism diagnosis, chances are high that you were “welcomed” into the world of ASD with a 100-page document from Autism Speaks, followed by a 3-page list of ABA and behavior-based resources in your area. It is important to know that - in spite of what certain Autism "professionals" will tell you - a behavioral approach simply won't help or support the PDA child.
Alternatively, if you are without a diagnosis that truly "fits," confused and lost in the wilderness of acronyms, or watching your child's behavior worsen with reward-punishment-based behavioral programs, this is your permission and starting point to take another path.
Unfortunately, the PDA profile is often missed by professionals. There are two reasons for this: It is not yet a category for diagnosis in the U.S. (although it is in the U.K.) and because PDA produces paradoxical behavior that challenges the conventional wisdom on what is defined as "Autistic" (e.g. These children can often make great eye contact, have strong verbal skills, and a strong interest in social engagement). PDA is also frequently misdiagnosed as Oppositional Defiant Disorder (ODD) or Attention Deficit Hyperactive Disorder (ADHD).
Although PDA is not (currently) a category for diagnosis in the U.S., it is real, and we’re at the forefront as parents bringing awareness to the medical community, our schools, our families and friend circles. We are here, truly where the rubber hits the road, in our homes, with our children, figuring out how to support them, day in and day out. Over the past six years, we have each figured out what resources can support the PDA child, so that you don't have to spend your time searching and going down unhelpful paths, like we did. The more information we have, the better we’re able to help support and advocate for our children.
So here’s our recommendation: Throw that Autism Speaks file in the trash, abandon those reward-punishment models that don't work for your kid and that make you feel like a crappy parent, and use this resource list instead!
Where to Start
My Six-Year-Old is Teaching me to be an True Ally in the Detroit Free Press
EXTREME DEMAND AVOIDANCE QUESTIONNAIRE
Download the English version if you think your child might have PDA or if you need help articulating your
concerns to a pediatrician, therapist, or family member.
PDA in the Therapy Room
The Teacher's Introduction to Pathological Demand Avoidance
The PDA Paradox
Understanding Pathological Demand Avoidance
Me and My PDA
Pathological Demand Avoidance Syndrome: My Daughter is Not Naughty
PDA by PDAers: From Anxiety to Avoidance and Masking to Meltdowns
"What is Pathological Demand Avoidance (PDA)?" (on Neuroclastic)
"What Does Pathological Demand Avoidance Have to do with Autism?" (in Autism Parenting Magazine)
"Emerging Neurodivergent Identities: A Lesson on Pathological Demand Avoidance with Krisy Forbes"
(in Forbes Magazine)
"An Exploration of the Pathological (or Extreme) Demand Avoidant profile in children referred for an
autism diagnostic assessment using data from ADOS-2 assessments and their developmental histories" in Good
Autism Practice (2020).
PDA North America
PDA Society (UK) (non-profit)
PDA Matters (USA) (non-profit focused on raising awareness)
PDA-IDENTIFYING ADULT ADVOCATES and TRAINERS
Kristy Forbes (provides trainings internationally)
PDA ASSESSMENTin the United States
Melissa Neff, Ph.D. (PDA Assessment, but currently has a waitlist. Based in Missoula, Montana, can practice virtually in
Alex Klein, Ph.D. (PDA Assessment. Based in Oakland, California, email@example.com)
Lisa Hancock, Ph.D. at the Summit Center (PDA Assessment, San Francisco-area, California)
Illuminate Psychological Assessments, LLC (PDA Assessment, Chicago, Illinois)
Dr. Mark Bowers, Director at Brighton Center for Pediatric Neurodevelopment (PDA Assessment, Based in Brighton, Michigan)
Dr. Donna Henderson (PDA Assessment, Washington D.C.-area)
Brandi D. Smith, Psy.D. (PDA Assessment, Atlanta, Georgia)
Gokce Ergun, PhD (PDA Assessment, Dayton, Ohio - scroll to bottom of page)