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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.
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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!
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OUR RESOURCES
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.
BOOKS
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
ARTICLES
"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).
WEBSITES
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)
Sally Cat
CLINICIANS
U.S.-Based List of PDA-Friendly Practitioners
PDA ASSESSMENTin the United States
Alex Klein, Ph.D. (PDA Assessment. Based in Oakland, California, dralexlein@gmail.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)
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Gokce Ergun, PhD (PDA Assessment, Dayton, Ohio - scroll to bottom of page)
Dr. Erica R. Crawford, PsyD (PDA Assessment, Greenville, Texas)
Jennifer Corie, Ph.D., CCC-SLP at Iceburg Therapy Services (PDA Assessment and therapy services, Baton Rouge,
Louisiana. Also licensed for telehealth in Florida).
Dr. Preetika Mukherjee, Ph.D., Pediatric Neuropsychologist in New York City, NY.
Small Brooklyn Psychology Group Practice in New York City, NY.
United Kingdom
Gloria Dura-Vila (PDA Assessment. Psychiatrist in the UK)
THERAPY FOR CHILD AND FAMILY THROUGH A PDA-FRIENDLY LENS
Michelle Avery Ferguson, LMSW (Based in Ann Arbor, Michigan)
Diane Gould, LCSW (Based in Chicago, Illinois)
Nanika Coor, Psyd (Based in New York, NY)
Blossom Child Therapy (Based in California. Providing virtual, inclusive, and Neurodiversity-Affirming Mental Health Support for Children)
Therapist Neurodiversity Collective - (Collective of Neurodiversity-Affirming therapists that do not use exposure
therapy, ABA, or behavioral approaches to support children. Therapists are located in the following geographic
locations: Connecticut, Maryland, Oregon, Texas, United Kingdom, and Virginia)
PARENT COACHING and TRAINING
Laura Kerbey (Based in London, coaches internationally, provides individualized parent coaching)
Journeys with PDA (based in Illinois, provides individualized parent coaching and free weekly support group)
Sandra McDonell (based in the Washington D.C.-area, provides individualized parent coaching)
Kristy Forbes (based in Australia, provides training on parenting PDA, titled "In Tune with PDA")
Nurture Programme (5-week training on PDA)
PDA North America ($350 U.S.-based certification training on PDA for parents and practitioners)
Tigger Pritchard (Provides individualized parent coaching. Helpful for understanding the "Deep Why" behind autistic
behavior and how to support your children by thinking outside of the neurotypical lens. He was helpful
understanding Cooper's eating).
PDA-FRIENDLY EDUCATION CONSULTING and RESOURCES
Zach Morris, M.Ed. (Educational consultant, Teacher, Parent advocate. Works
through a lens of "non-violence" and a radically different (read: PDA-friendly)
approach to education.
Alliance for Self-Directed Education (This is a non-profit and great resource for unschoolers. It contains a directory of self-directed learning schools - some with drop-in attendance!!! - in the United States).
PDA-FRIENDLY OCCUPATIONAL THERAPISTS
Michelle Phibbs OTR/L (Owner of Willow Integrated Therapy in Ann Arbor, Michigan)
Colleen Doyle M.S., OTR/L (Owner of Together in Movement in Riverdale, Maryland)
PARENTING WEBSITES about PDA
Steph's Two Girls (Based in U.K.)
"PDA Mama Bear" (Based in Maryland. Especially see this post on the "Mysterious
Parenting Paradigm Shift")
Living Lyman (Based in Montana)
PODCASTS and PODCAST EPISODES
PDA Parents
TPP 191: "A Conversation with Author and PDA Emissary Harry Thompson" (Perspective of an adult with PDA)
TPP 173: "A Conversation with Dr. Melissa Neff about PDA (Pathological Demand Avoidance" (Perspective of a
clinician who diagnoses PDA in the U.S.)
Neurodiversity Podcast, Episode 54: "Understanding Pathological Demand Avoidance"
Neurodiversity Podcast, Episode 85: "'Pathological' Demand Avoidance? Words Matter."
BOOKS FOR PDA KIDS
All Cats are on the Autism Spectrum
Pretty Darn Awesome: Divergent not Deficient
Super Shamlal
NOVEL
Saturdays at Noon: One Circle of Strangers, Three Lives About to Change Forever (This is a novel features a character with Pathological Demand Avoidance)
NGO
Neuroclastic: The Autism Spectrum According to Autistic People
BOOKS
Uniquely Human: A Different Way of Seeing Autism (Chapters 4-6 are especially relevant to understanding the PDA
child)
Neurotribes: The Legacy of Autism and the Future of Neurodiversity
PODCAST EPISODES
TPP 91: "A Conversation with Steve Silberman about his Book Neurotribes and the Future of Neurodiversity"
TPP 99: "Barry Prizant Talks about his Book "Uniquely Human: A Different Way of Seeing Autism"
TPP 182: "A Conversation with Autism and Neurodiversity Support Specialist Kristy Forbes"
Uniquely Human Podcast Episodes: Autism and Building Trust, Emotional Regulation: A Key to Understanding the
Autistic Experience
COMIC
"Understanding the Spectrum: A Comic Strip Explanation" (Helpful for understanding that Autism is not only about
"language and communication skills," but rather is multi-faceted, complex, and unique to each human individual)
WEBSITES
The Autistic Advocate (See this post for help understanding "Masking" and demand avoidance more generally)
Speaking of Autism (See this post for help understanding anxiety, and this for "behavior as communication", and this post for understanding how Autism is not just about communication, but rather sensing and perceiving the world
differently).
ASAN: Autistic Self-Advocacy Network
TED TALK
"Why Everything You Know about Autism is Wrong" by Jac den Houting
NON-BEHAVIORAL APPROACHES
to PARENTING and THERAPY
BOOKS
Beyond Behaviors: Using Brain Science and Compassion to Understand and Solve Children's Behavioral Challenges
The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children
Differently Wired: Raising an Exceptional Child in a Conventional World
The Whole Brain Child
PODCAST EPISODES
TPP 154: "Dr. Mona Delahooke on Looking Beyond Children's Challenging Behaviors"
TPP 131: "Alfie Khon on Why Children Thrive When we Practice Unconditional Parenting"
WEBSITES
Tilt Parenting (Excellent resource for all things related to raising children who are "differently-wired")
Interdisciplinary Council on Development and Learning (ICDL) (See this to learn about an alternative approach to ABA therapy, based on a "Developmental, Individual Differences, Relationship-based" Model)
*For an example of Casey and Cooper's experience with therapeutic play, see this blog post.
LANGUAGE and COMMUNICATION
BOOKS
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The Declarative Language Handbook
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Understanding Pathological Demand Avoidance (See pp. 23-32)
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Non-Violent Communication: A Language of Life
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PODCAST EPISODE
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TPP 211: "Parenting Scripts for Stressed out Moments with Kids, with Dr. Adele Lafrance" (For help with in-the-moment de-escalation strategies)
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ARTICLE
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"What is Pathological Demand Avoidance Syndrome (PDA)?: How We Can Help" (in Think Social Publishing)
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WEBSITE
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Profectum Institute (Free videos for parents to learn how to connect through therapeutic play)
BOOKS
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Sensational Kids: Hope and Help for Children with Sensory Processing Disorder
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The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder
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No Longer A Secret: Unique Common Sense Strategies for Children with Sensory or Motor Challenges
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Understanding your Child's Sensory Signals
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ARTICLE
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"Brain Wiring Connected to Sensory Processing Disorder" (University of California - San Fransisco)
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BLOG
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Speaking of Autism (See this post on eating and this post on the Autistic sensory experience, more generally).
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WEBSITE
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STAR Institute (Best resources and research for all things sensory)
ANXIETY AND TRAUMA
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BOOKS
The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma (Good explanation of what happens to our bodies when we go into "fight or flight." Helpful for understanding the PDA child's experience)
Beyond Behaviors: Using Brain Science and Compassion to Understand and Solve Children's Behavioral Challenges (See Chapter 8)
ARTICLES
The Unique Trauma of Growing up Neurodivergent
WEBSITES
Dr. Porges, Polyvagal Theory, and the Autonomic Nervous System
Beacon House: Therapeutic Services and Trauma Team
PODCAST
Uniquely Human: Interview with Jed Baker on Anxiety, The Incredible Hulk, and LIfe Satisfaction.
THE PARENT EXPERIENCE
BOOKS
Not What I Expected: Hope and Help for Parents of Atypical Children
PODCAST EPISODES
"TPP 167: Dr. Rita Eichenstein Offers Help and Hope for Parents of Atypical Children"
INTERSECTIONALITY
AUTISM and RACE
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Uniquely Human Podcast: Autism and the Complexities of Intersectionality with Guest Morenike Giwa-Onaiwu, Ph.D.
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AUTISM and GENDER
"Largest Study to date Confirms Overlap Between Autism and Gender Diversity" (in Spectrum)
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