Autism & PDA: Understanding Demand Avoidance, with Diane Gould | EDB 268

PDA North America founder Diane Gould discusses the “Pathological Demand Avoidance”, and its occurrence along the autism spectrum.

(VIDEO - 30 mins) Diane is a therapist, consultant, and Licensed Clinical Social Worker. She has worked for both private agencies and school systems. She has served as a consultant and been a guest lecturer for many area school districts, parent associations and private agencies. She is proud to be the first American professional with a certification in Pathological Demand Avoidance Syndrome.

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[spiritualwarfareforyoursou]

"Can't not won't" I'm sitting here crying as a 44 yo mom just feeling relief that I'm not just a lazy piece o' shit like everyone always thought I was 🥺😭

[dawnhughes]

I was dx as autistic as an American woman in my 40s. There is no where to go to learn about these things, no therapists willing to help an autistic adult woman with Medicaid in my state. My life is a disaster and I'm so depressed and anxious despite higher than average IQ. This PDA makes so much sense. Thank you for sharing and raising awareness. So needed and will save lives!!

[asarogers]

One thing I'd like to say as a PDAer is that the persistent drive for autonomy name isn't particularly good because a persistent drive for autonomy is a very good thing and while my pda definitely contributes to my autonomy centered personality, it also prevents me from self engaging in things I want to do, it stops me from structuring my life in a productive way

[Stormbrise]

As an undiagnosed women in my 20s I worked in a casino. Doing data entry, spreadsheets and some design. I was happy just doing that. I had great boses, then I got this lady. She made my life miserable, saying I had to complete things in an 8 hour day. I was doing the work of 3+ people, but her demands were making my mask wear thin. I had meltdowns at work, went home exhausted. All I could do was vegetate or maybe walk on the beach (yeah the casino is on the beach). A friend got a new Mac, and I would go to her place and read and then play on the computer then head home. I quit the job about 5 months after she made my job a total insufferable thing. I am trying not use cursing words.

[tammyhendren]

Key points in this video that really nailed my PDA son (16yo): *Reward system creating more anxiety making them ineffective, *is more socially inept contradicting Autistic norm, *flexibility on my part as a mom - accepting my son for who he is and a whole new perspective on picking my battles and this just names a few. In the US, PDA is not a clinical diagnosis by DSM which makes finding help very difficult. Counselors I have spoke with always think he needs social skills counseling which is not what my son needs. As stated in video - having that PDA diagnosis is critical because therapy looks so different from what professionals see as a general autistic diagnosis. After many years of trial and error, I have found that asking if he can do something in a non directive/nonthreatening way really helps. For example, instead of "It is garbage day, you need to take garbage cans down to curb; I would say, "Do you feel like bringing garbage cans to curb?" or Garbage cans need to be brought to curb what do you think? Sometimes I can say : "Hey just reminding you about garbage cans" or (team effort approach) - "If I bring garbage cans to curb can you bring them back when they are emptied?" So rarely do I use declarative statements. I almost always ask a question and do it in a way that he has a choice and there is no right/wrong answer (me picking my battles). Someone gave me some great advice before my son was diagnosed years ago which basically said I need to learn how to communicate with my son in his language whatever that looks like. It has been a nightmare but finally is getting better. He is maturing which I believe has helped a lot. Thank you for this enlightening video that is so spot on in identifying PDA. Thank you Thank you Thank you.

[vazzaroth]

Wow, just found PDA outside of a basic, clinical definition today. I am 100% confident it's me. IDK where to go from here but I'll figure it out. I always do :)

This FINALLY helps me understand why I WANT to hang out with my friends, I make plans to hang out with my friends, then when the day comes or they ask to hang out finally... my brain says NO HOW DARE YOU CONSIDER MAKING PLANS WITH ME! Got a text from one while watching this and it all clicked.

[Problempossum]

Thank you so much for this video. My life was absolutely exhausting before I found out I was autistic and had a PDA profile. It was like a constant tug of war with everyone and thing around me, but the moment I learned about PDA my entire view of myself changed. Once I understood that my problem centered on control and autonomy, I went about changing everything about my life to better suit that. I was able to adopt healthy ways to cope and counteract my PDA and by surrounding myself with more honest and genuine people, I find my relationships have improved significantly.

PDA definitely needs to be an accepted profile in America and Canada as well.

[Wizardess]

PDA - yeah, it's pathological. It gets in the way of my ability to function. Demand Avoidance is also precisely on the mark. It is bad enough for me that a PDA, personal data assistant, is deadly. As soon as a demand is written down I can't do it, even if it is something I want to do. It is wrenching to work through this barrier. I have found that if I do not place a demand on myself, a deadline, I can do pretty well, especially if the task requires some design and mental simulation. That is in the framework of engineering and writing software. When the demand avoidance is in the picture I can work furiously and produce little or nothing. I need the time just loosely thinking on the problem to let my brain taste the problem and generate a solution, often in a spasm of prodigious productivity. The baby is born when it's ready not when I demand it. That is the chief problem I have with schedules, micromanagement, and so forth. The idea comes when it will come. Sometimes in an instant flip answer to a question. (That's why GPS satellites literally reboot periodically. A cosmic ray event could send it off into lala land and the reboot recovers it.) Sometimes it takes a month or more.to find something my frustrating brain will work with.

Put a demand on it and it'll get done, sloppily and late. When I learn a job must be done and I can do it, the job gets done. It's the demand, more specifically the point of committing to a schedule, that locks my brain up into tiny little Gordian knots. Somehow I have made it through most of 8 decades despite this. Knowing this is a characterized problem helps be feel not quite so badly about the times this has really wrecked things for me. I feel i must stress, though, it is not relationships that help me as much as being able to deal with my almost ritual refusal to do something which i then turn around and do. That's the most consistent key to unlocking my brain and my ability to work and function.

{o.o}

[denisekriel]

We mostly refer to it as EDA I South Africa. Extreme demand avoidance.

[pineapplecheeselific]

Could PDA be a contributor to why I don't want to go to sleep every night and why no matter how much I beg and bargain with myself to get off the couch and go to bed I just lie there motionless? The expectation of going to sleep on time every night is so high that it gives me anxiety? (I get incredibly anxious about going to sleep) And why falling asleep in "inappropriate" places / with the light on when I'm supposed to to turn it off (defying what is expected of me at bedtime) is easier?

[lucib]

I can relate to this. It makes me want to cry when I think of how much this has affected me. My ADHD (and the wall) doesn’t help.

[herewegokids]

My best pda story is the EUPHORIA i get when i figure out what the boss is going to want me to do, ahead of time, then wait innocently for them to tell me, so i can smile and say....already did that. When i tell you there is no better feeling in the world. And yes i also hate being told what to do in general as well

[colorvision]

Wow this is an answer to a prayer! My son 100 Has this. I am constantly judged that I’m not strict enough. Thank goodness I didn’t listen to the ridiculous ideas of teachers like taking my son’s bed away etc.

[himbo]

Thank you. As an autistic adult who has heard a small amount about PDA, I found this video very informative. I was wondering about both perfectionism (fear of failure, especially related to everything feeling "too complicated") and also hoarding ("I can't throw anything away because it is too hard, too complicated, I don't know what to do, I think I will do the wrong thing").

[elizabethsavage]

She mentioned that the professionals should be asking questions in order to give control to the PDA person... Questions are literally a demand (for an answer). Even on a good day my tween has a limit to the number of questions she is able to handle before she retreats to non-verbalism to cope.
And, yep, the constant exhaustion (as a result of coping with PDA & anxiety) is real.

[bringhomethebasil]

As someone with PDA — I find that the solutions can be found in the way I approach others. I never demand anything from people but ask for help in such a way that allows people to opt out if they don’t want to help. They often do reject me.

[skyleruballe]

Something that also works for me: Hearing the stories of other PDAers and being able to read them and pull from it what applies to me and what might help me. With no 'you should do this' or 'this is my advice' . Just experiences of people who are like me, and how they dealt with it. As PDAers we can feel so alone even when knowing there's others out there. Not feeling alone helps so so much too

[Fwootgummi]

I've been wondering if I'm autistic for a while and when I hear about the details of PDA I can't help but see myself. I struggle with daily stuff all the time unless I truly feel like it's my own free will to do it. When people ask me to do stuff I tend to agree but still skirt around it to find out how much of it I can do in my own way and in my own time, and if I can't then I won't. I get really resentful when I'm doing things I don't want to do and there's a good chance I break down a bit when I do it.

I don't want to be unreliable and selfish, I like helping and making people happy, but when there's expectation attatched to it and I know that if I fail there will be painful consequeces I just can't bring myself to do it. I hesitate with every text I send and often I don't send them at all and phone calls are completely untouchable to me. Occasionally I'll make a phone call, but it's usually if I have something really important where I can't afford not to, but I'll still try to find a way around it for as long as possible.

My family hates this because they hardly ever hear from me and I'm sure the relationship feels really one sided. I also have roommates and I avoid leaving my room when I hear them chatting or cooking in the kitchen because I don't want to deal with whatever they may want from me if they see me for a split second. Even a smile and a wave feels like too much to ask sometimes.

[joclayton]

Casey Erlichman and At Peace Parents is doing the best work in supporting families with a PDA child that I have come across in 7 years. When PDA is reframed as a nervous system disorder it makes more sense to me. The amygdala is constantly triggered by the smallest thing and because of this the "Demands of everyday life" become a threat and the PDAer is in a constant state of hyper vigilance/extreme anxiety, which then the individual and the family have to find ways of dealing with. If the nervous system is on a hair trigger then a child and a family are going to be constantly in flight/fright/freeze and if this isn't dealt with in an informed and supportive way the problem becomes ever more entrenched resulting in young children with PTSD/CPTSD-like responses to things like attending school or going to the bathroom/washing/eating etc. There has to be more awareness and support. Our children are being horribly failed across education/health/social services because of ignorance of this condition and ABA/behaviourist approaches to their unusual behaviour. These are vulnerable, desperate young people with often so much to offer.

[hadleybee]

This reminds me of when I was learning to drive in this lady's car. She was telling me what to do but I felt so disconnected to my own sensory input that I was abducating my body functions to her brain.
IT IS difficult to explain but it seems to be related to a sense of autonomy that gets so violently shut down when trying to please or interpret another's requests. It's like suddenly your whole nervous system get HIJACKED and you have to hand over the controls. Transitioning back to your own neural input and motivation is so painful and takes removal from that person to get away from it.
THANKS FOR THE talk.