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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 TrustEmotional 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

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) 

ANXIETY AND TRAUMA

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THE PARENT EXPERIENCE

INTERSECTIONALITY

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