Understanding the Pathological Demand Avoidance Profile of the Autism Spectrum

Understanding the Pathological Demand Avoidance Profile of the Autism Spectrum
Description
Pathological Demand Avoidance (PDA) is now widely recognized as a distinct profile of autism in the United Kingdom and other countries. Individuals with a PDA profile share challenges in social communication/interaction and restricted and repetitive behaviors with others on the autism spectrum. In addition, however, PDA is characterized by high anxiety and a need to be in control. As a result, individuals with PDA can find everyday demands and requests intolerable resulting in behaviors that are challenging to others. The strategies developed to manage PDA differ from strategies considered effective for individuals with other forms of autism. This presentation will discuss PDA and focus on the interventions helpful to this population.
Speaker
Diane Gould LCSW, BCBA
Ms. Gould is a Licensed Clinical Social Worker and also a Board Certified Behavior Analyst. During her long professional career, Ms. Gould has worked for both private agencies and school systems. Ms. Gould has worked for the Northwest Suburban Special Education Organization and the Niles Township District for Special Education. She has served as a consultant and been a guest lecturer for many area school districts and agencies. Ms. Gould was the Childhood Disability and Family Support Specialist for the Jewish Children’s Bureau for over a decade. Ms. Gould has expertise in autism. She served on the Professional Advisory Board of the Autism Society of Illinois for many years. She has provided training on autism and related topics to hundreds of teachers and therapists.
Currently Ms. Gould has a full time private practice divided between Deerfield and Westmont, IL. In her practice, she serves children and adults with special needs and their families. As a BCBA, Ms. Gould also provides behavioral assessments and consultation to families and school districts. She also offers the PEERS program, an evidence based social skills program for teens and young adults.
Ms. Gould’s education includes certification in Applied Behavior Analysis from Penn. State University and a Master’s Degree in Social Work from The University of Illinois at Chicago in 1987. She has received additional training from The Institute for Applied Behavior Analysis in Los Angeles, California, The Center for Collaborative Problem Solving, Boston, Massachusetts, UCLA for PEERS certification and The Social Thinking Center, San José, California. She is a certified Grief Counselor and has recently been certified in Pathological Demand Avoidance.
Recorded on December 11, 2019

[@keithharrison5268]

Thank you so much for your presentation. I am a 65 year old women who has PDA and I have not been diagnosed. I really recommend Harry Thompson. He explains it so well. When he comes to you he will be really good. His You Tube videos help me. Your talk will help. I grew up undiagnosed and have been married for 37 years and my husband gets exhausted. I have two neurotypical grown up children and my PDA exhausts them. I also have two grandchildren and they don’t understand what is wrong with me. Appreciate you getting talked about PDA in America ❤

[@claireseymour4902]

So, so, so, so, helpful! Thank you very much!

[@M.Shepardbee]

Logically applied Emotional intelligence . If this then that. If you treat others how you want to be treated, then you can navigate them as a person. If most people think your different, then most people are common If most people are common then common sense is what they follow. If your funny/liked/useful then most people will make exceptions/less demand If the above then slips in apperence/behavior will be the exception that makes the rule. Anxiety is not right. Its something else.

[@M.Shepardbee]

Also, things that are unpredictable levels rhe playing field.

[@M.Shepardbee]

Hmm. Sensitive to outside emotions.. hence sensitive the feeling of anxiety. Because.. if it were anxiety.. I know people with anxiety. They would do what you say if they knew it was possible to avoid that anxiety.

[@M.Shepardbee]

Also its adding human qualities to inanimate things. That way it takes the negativity away from people.. because ultimately your feelings or way of life are not for them to manage, therefore you can't hold them accountable for how you feel. Like everyone, know that the issues are more woth social rules. They are taking the cut across the grass because everyone else is... your walking around the block because.. its not their fault. So even if they gang up on you... they are just collectively following the path of least resistance.

[@Carollnn]

You really like to hear yourself talk. I hope what you’re saying means something to you. It’s certainly not clear or logical.

[@M.Shepardbee]

@@Carollnn I was told that I was being rude. It does make sense to me. I do over explain so that if someone really wants to understand it's there for them. I'm sorry you do not and hope you have a wonderful day.

[@TheGenbox2]

One pov that may be controversial. Don't ask an Autistic person what you can do for them. (to an adult) It presumes an inability/disability and infantilise them. Autistic folk, like all adults, can ask (or learn to ask) for what they want, or start a dialogue of adult negotiations.

[@alexhiller3088]

surveillance

[@bollweevil8112]

Skip to 12:00 , the intro is extremely long

[@GriefMuse]

I'm sorry but so much of the language and information used in this presentation is beyond outdated. You really should not be making general biases about autistic people with phrases like "lack empathy and imagination" not only is it dehumanising, it's incorrect. Also doubling down on wanting the name Pathological Demand Avoidance to remain unchanged while most of the PDA community is very vocal about the name being inappropriate and harmful, and a desire to see it changed. I feel like very few individuals actually suffering from PDA were consulted about this presentation, and while I'm sure any parent or partner seeking information about PDA may find this useful, as an actual PDA sufferer myself I felt it lacked any real understanding or empathy for what the condition is truly like to live with, and almost all of the struggles were generalised or glossed over, with very little detail given to how these symptoms manifest in everyday life. Instead of hearing about how it appears to the concerned mothers of America, I would have much rather heard the accounts from someone who actually exists on that spectrum and can speak from their own lived experiences. I do appreciate the intention and effort made to educate people about PDA, just wish the delivery was enacted with a little more due care for the people it will directly effect.

[@moldovan2035]

Very much agreed; at the same time, Diane Gould is one of the versatile and adaptable professionals, so I think she does deserve some understanding; she herself is constantly learning about PDA, so I truly hope that she will continue to improve her linguistics as well. I also agree with your stance against the pathological terminology; I also hope that it will eventually be changed to persistent drive for autonomy or something similar at the direct and clear recommendation of autistic PDA-ers (I am one of them 🙂) If you want more details about this, Harry Thompson is wonderful and he is also an autistic PDA-er who, for the time being, also uses the term "pathological" for lack of a more encompassing term, and he very clearly explains why. I am in the process of writing a paper about this exact same issue: to use 'pathological' or not to use it? We definitely need more input and suggestions for a term that actually combines this uncontrollable drive with autistic PDA descriptors by ourselves, not just by outsiders/clinicians.

[@lanni8224]

👍it’s a start! Not everyone is going to pick apart this , just a general idea of PDA is better than not knowing PDA. Plants a seed . People are where they are 🩷🩷

[@lanni8224]

@@moldovan2035so many more videos out that are better for certain reasons. But it’s good for people to stumble upon PDA videos / this could be valuable step for a newbie .

[@moldovan2035]

@@lanni8224 By being lenient with those who still have a hard time getting their minds around this (especially professionals), we are just delaying an acknowledgement and faster steps towards changing perspective while PDA-ers continue to suffer. If you cannot help, don't say anything; don't find excuses like "people are where they are"; being complacent doesn't help those in pain.

[@Minky2017]

I don't believe PDA is autism. It's parallel to the spectrum but has too many distinct differences so general autism diagnosis becomes impossible which comes before a the PDA profile.

[@meekos699]

PDA is really Autism. I’m PDA, my sister has a classic Autism. I don’t love eye contact, but because I can read social cues, I’ve always given it. I had Hyperlexia, echolalia, a speech delay, memorization of facts (people were my first special interest, but I have others that are more sterotypical too), extremely picky eating. Undiagnosed Autism RUNS in my family. My Autism likes routine, but I can’t follow any routine set in place by someone else and then my routines become a demand. PDAers have better social skills and understanding, but we still take things literally sometimes. My husband is an Aspie and he said he knew I was Autistic once we moved in together- I’m just really high masking because I’m PDA Autistic. Apparently people in my life knew I was Autistic but I didnt 🥹

[@etcwhatever]

​@@meekos699yes! Just because we can do things a classical autist cant...doesnt mean we feel confortable. I felt really identifyed with the eye contact thing. I can do it but inside my toughts are going at 10000 miles per hour. I dont like it, it makes my heart pound.

[@moldovan2035]

I would say do more research.

[@Minky2017]

@@etcwhatever you all sound exactly like everyone else in this world. My friends and family try to convince me that I'm autistic but I swear everyone is. I think it's just a part of being a human.

[@Minky2017]

I couldn't even get through the first 5 minutes. Not a smooth execution. The topic is great, the execution was terrible. Try adding people talking when talking instead of just a screen of words. Mix it up please.