Autism & PDA: Understanding Demand Avoidance, with Diane Gould | EDB 268
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- čas přidán 27. 06. 2024
- 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.
To find out more about Diane’s work, visit:
www.dianegouldtherapy.com/
www.pdanorthamerica.com/
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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!!
I'm at university now at 39 and my PDA (undiagnosed) makes me a ton of troubles with missing deadlines and stuff...
I was at 26 u am swedish man
I am in the same boat.😢
that's right, I looked for a therapist who understood autism and accepted Medicaid too, it's almost nonexistent. I finally found ONE woman doing it, and she works online so if you're in the state of PA, look up Allies for Health and they do it there
Sadly, there is very little understanding of autism in adults, and the understanding is less as we get older. All the attention is on children with autism. once we become adults, we are cast aside for the next generation. Doesn't matter if you are a man or a woman, insured or uninsured. The understanding from within the science just is not there. Nor is the an interest to pursue it. Society only cares about the young.
"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 🥺😭
I have this too. It's so hard.
❤ If you can find a way to unscramble all of the "before experiences" and redefine yourself as a non conventional creative type looking at the world hoping for opportunities to express myself and try out new things but not have to own the new things! This is a highly prized approach to the world and, if you can stop beating yourself up all the time, you could have some fun! Doing things for myself. And, defining some of the things I don't want to do as something I do want to do... in my own way, makes me feel freer and happier. Don't cheapen my experience with too many rewards and/or punishments and we can do some good work together.
In sum, renegotiate the world on your own terms, but keep many of those terms your own inner world's secret! Takes awhile to turn the boat around, but once you decide you don't "have to" or you can secretly use other people's request as optional all the while translating the requests into my own reason and desire to accomplish it!
THANK YOU FOR THIS TALK! This helps unlock some mysteries I've been working on my whole life! Need to know more!
RIGHT?!?
it has always felt to me (contrary to the opinion of nearly everyone who had ever met me) that I am a SUPREMELY hard worker 🫡 - however, for seemingly no reason at all - it is arbitrarily necessary for me to exert 5 times the effort and endure 5 times the stress when handling a task, in order to achieve less than half the results of any other persons... 😖
which not only feels unfair, but then on top of it all I will unavoidably get gaslit by onlookers (often those closest to me) 😢saying I'm lazy, stubborn, difficult, rebellious, and selfish when in truth, I KNOW that not to be the case;
to the contrary - in truth, I habitually out-work productivity circles around others I see (ironically, who seem not to even notice their work being sub-par, inconsistent, sloppy, or incomplete in some way)!
then finally, it's a sure fire way to evoke rip-roaring belly laughs from friends and family when I insist to proclaim that it is in fact my PERFECTIONISM which often may cause me to quit tasks perhaps before I've actually even really begun them in earnest...
so now, on top of a) failing a task I wanted to do, which comes along with my own self inflicted disappointment, frustration, and shame, b) I've endured the criticism and disappointment of others c) and been gaslit about my intentions, even called a liar, only to now d) find that I am disbelieved, made fun of, or otherwise ostracized and belittled when I honestly make a genuine report of my experience. 😢
*le sigh* 😮💨and they wonder how I could possibly feel such anxiety over such a trivial task... 🤔
I'm 56 and also am in tears reading the comments. There is comfort in knowing you are not alone, there are others out there that understand.
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.
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.
If I lived near the beach I would literally never leave the shore.
Watching waves and that sound is one of the very few things that bring me total peace...
It's like you are breathing with the earth, that pulse and rhythm...
Anyway!
Enjoy being near the ocean!
I had a boss like that, telling me I should be able to clean 35 horse stalls in 3 hours...
Which if you want to do it well enough so that the horses can be comfortable and clean, isn't possible in that time frame. For me, anyway.
I did an excellent job at it, it just took me too long. According to barn "management ".
And it does take me awhile, I am meticulous and careful, but that's why you want ME taking care of your horse, not some hourly employee who's only concern is clocking out at 2pm...
But time is money, right?
(I would work for free to make sure the horses were properly cared for... but then I would be homeless...)
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
Absolutely
I see it as there being two types of "autonomy" one which is basically just functional independence, it's living your life autonomously, and then there a sort of mental autonomy which, in my personal opinion, is what pda actually interacts with, it's the feeling of doing things for your own reasons on your own time by your own volition not for external reasons. I'm really new to the concept of pda so I might be a bit off of what some others might say but I relate to it more deeply than any other pathology I've ever thought might help me understand myself in the 25 years I've been trying.
Can you help me understand why my son won't just do as he's told. I'm ND myself and it just causes so much stress for both of us. I really dislike him at times.
@@caramadra5 My understanding is that a person with PDA has an overactive nervous system that interprets demands as dangerous and/or overwhelming. In other words, if your child has PDA and someone tells or asks them to do something, their brain automatically goes into the fight, flight or freeze response. They are overcome with anxiety and the feeling that they are in danger. The body's response is to fight, run away (which might include creative ways to try to avoid the demand) or freeze up. They may know that logically there is no real danger and maybe they want to do what they've been told, but it's incredibly hard if not impossible to get their body to cooperate and do the thing because another part of their brain is fighting to avoid what it interprets as danger. The demand can be more subtle as well, like knowing they are expected to do something. I hope you are able to find things that help you and your son!
@@caramadra5what’s ND please?
We mostly refer to it as EDA I South Africa. Extreme demand avoidance.
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.
Agreed.
Well said!! I just discovered this myself!! I honestly feel like some pressure has been removed. This information is life enhancing!
RE: "surrounding myself with more honest & genuine people...":
having been completely surrounded on all sides - at home, at school, even in my group of friends - with borderlines, narcissists, and/or other people who were like me similarly accostomed to being used, trampled, devalued, and gaslit as a matter of course... consequently it has taken me 40 years to even NOTICE the extent to which each and every one of them consistently over worked, under valued, took for granted, undermined, ignored, belittled, criticized, and took advantage of my better than average traits and were brutally unforgiving, intolerant, critical and unsympathetic to my hardships, my struggles, and the difficulties I endured regularly.
not only did I not recognize their selfish, self centered, manipulative, and unreasonable behavior for what it was - I actually BELIEVED that they were the 'good friends', 'caring, loving, supportive family/mother' they claimed to be (and in most cases actually believed there were).
To be 100% fair and honest - I consistently made excuses for them and gave them the benefit of the doubt time & time again far beyond what was reasonable and in the face of overwhelming contrary evidence - simply BECAUSE of the fact it just so happened to be somehow, against all odds, in fact so completely and unbelievably pervasive without even a single exception throughout my life, somehow...
all it took was making a SINGLE friend in my life who treated me the way I had always treated everyone to shatter my whole world and swiftly lead to the realization that no one I had known prior could handle me demanding fair, reasonable, equal treatment... so they all abandoned me, which gave me the emotional space to investigate into myself, my own feelings, beliefs, needs, experience and discover for myself PDA which has unlocked a tragically overdue sense of self validation, justification, and given me (for the first time EVER) a sense of identity which included all the parts of me which had been previously shattered, scattered, hidden in shame, and misunderstood even by me!!
my whole universe is doing spiral backflips and sending me oscillating from the agony of grief filled mourning for the last 4 decades of being unseen, invalidated, judged, and filled with self loathing - back and forth with a powerful and empowering sense of pride & accomplishment at having done such a spot-on performance imitating the neurotypicals around me that it's highly plausible that had I not done the internal work and external research to arrive at self diagnosis that no one would have ever perceived, noticed, identified, or understood my mindset, behavior or lifestyle as someone om the autism spectrum with an even MORE rare subtype!!
1,000 thank yous to those doing the good work of raising awareness of PDA profile autism here on this platform and wherever else in the world.
thank you so very muchly!
please, by all means, do keep up this vitally important work raising awareness and promoting understanding!
@@SueDamronlife-saving, perhaps even - in some cases, sadly and tragically enough 😢...]
@@TismyCitizen wow this comment I feel every bit of this however I am lucky enough to have started discovering my Autism and PDA at 24, only just started taking time for myself as i spent my past years trying to live like everyone else only for it to drive me to some really dark places, ive had no time for myself I was forced to hide my autism from my mum who is overly knit picky and absolutely belittled me for my differences for years and I was the one that had to apologise when i said things were wrong, and theres my dad that abused me all my teen years I was homeless at 17-18 and spent the last 6 years running into these stupid walls no one else seemed to struggle with until, my mate online for like 6-8 years found out that he was autistic and he also thought that i might've been especially given the fact my other good mate in real life also has autism, and wham bam thank you mam turns out I have autism and most likely pda shits fucked I go through ups and downs its so relieving to finally have some understanding and the evil parenting voice in my head is quieter but it also feels very debilatating as im unsure where to go from here but I do have a weird happy feeling one I havent felt for a very long time now that I finally started understanding this part of myself
thanks for the free therapy money is expensive
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.
I can relate as well... and now I must ask "What is the wall?" in case this is something new that I might also relate to.
@@BillieGote They may be referring to "The wall of awful", google the term you may find several resources on it. Good luck on your self discovery!
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}
❤
I get upset and protest that I can't do something. Once I say I can't do it next thing I know I will be able to do it, no problem.
Great description, very cogent.
“Taste the problem….” Yes. ❤️
I don't understand why he just won't do as he's told. I'm ND and I do as I'm told even if I feel defiant. It looks like bad character. I've been told that by a child Psychologist, that he just bags a bad personality.
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.
Thank you for taking time to give a detail comment. With examples. I have a high functioning autistic 18 year and it’s a nightmare right now. He is depressed and stays behind on his senior year work, and anything to do with college . I don’t know how to communicate with him. He doesn’t know how to listen or receive information with a huge defense. I feel so hopeless rn.
Wish my mum was this attentitive, your son seems really lucky and your approach is awesome the way you ask questions is like butter to my pda ears lol, but seriously good to know ill be able to eventually get my mum to understand been difficult but also good to know why we clash so much
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.
O my that sounds intense
Good on you get him assessed ASAP.
Join a support group meet people going through the same they are your biggest supporters.
She did a FANTASTIC job of trying to explain this. Thank you.
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
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?
SAME. Also I MUCH prefer using objects for purposes they weren't intended. Teacup? Nope, it's a soap dish. Costume jewelry earrings? Nuh uh. It's a curtain drawback
Ooh! Never thought of that!
I think you may be right. You described what I've been going through almost my entire life.
How interesting....I'm a 55 yr old on the waiting lidt to be assessed, my GP thinks ASD and ADHD. I've always found that i hate using the rooms in my home as they are 'supposed' to be....i currently have a downstairs bedroom and upstairs sitting room (just like it better) and will use rooms for several functions that don't seem logical to others....but it makes me feel calmer.😊
Yes very much so. That's an issue I have too.
My 16 yo daughter was diagnosed with ASD-PDA this week. Your presentation rang so true. It seems that the PDA profile sticks closely to type, which is actually very helpful. I now know how to help my darling child. Thank you from Australia.
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").
I think ill do the wrong thing all the time. I cant make choices even about my hobbies. I feel like if i pick something it might be wrong...sigh
As an LCSW myself... and slowly coming to self-diagnosis of ASD, this concept really speaks to me and my history, as well as a number of my clients. Thank you!
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.
Yeah, these example interactions sound very stressful. As an adult with PDA I've found that the best strategy is to be proactive about tasks that someone may ask me to complete in the future; "No one asked me to do this, but I'll feel better without it looming over me, so I'll do it now."
I'm a 78 yo Aspie with PDA -- and I discovered at 57 that I was Autistic, then at around 70 that I had PDA... NOT the ODD that I had been misdiagnosed with in 1996.
I was lucky, I had been creative and agile, so I was able to build diverse careers and reputations in fields including teaching (at all levels, including Special Ed and universities, graphic design, photography, advertising, marketing, management consulting, as a columnist, author, public speaker and more.
I developed solutions to major problems in fields like marketing, sales, organisational behaviour and more.
I even created a direct sales program for myself (my PDA would not accept failure!) that is about to become available in the USA in 2024, which has been producing extraordinary results -- and even works for Autistic direct sellers!
So I was really pleased to see PDA receiving some positive attention for a change.
I began renaming it as Pervasive Desire/Demand for Autonomy at least a decade ago because Pathological Demand Avoidance was so symptom-focused rather than CAUSE-focused.
Read more here:
myaspieworld.home.blog/loss-of-autonomy/
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.
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
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.
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.
This is really good. Parents, remember that it’s not an act of defiance. It doesn’t feel good to be the kid who won’t do chores or come to the dinner table right away. It’s anxiety, an involuntary physiological response. I read “Unconditional Parenting” by Alfie Kohn, and it really resonated with me. It’s not about PDA, but it’s about parenting without trying to condition or control your kids. With PDA, we can’t live with control tactics. Rewards and punishments are a slap in the face. I want to add to what Diane said about changing your language: it’s about your attitude. If you think you can say the magic words that will make your kid do the thing, it will backfire. They will figure out that you’re trying to control them, and it will hurt. Don’t think that you’re the boss.
I responded well when I was taught things in a group setting, so it wasn’t directed at me. I liked to hear my parents give advice to my older siblings, long before I encountered their situation, so I could think about those ideas and decide what I would do in the future. I felt like I could shine when I decided on my own to do something that no one was expecting. But if someone said, “I knew you could do it,” the feeling shattered. Please don’t try to predict their future. They will choose. Provide them with the information they need to make good decisions. Don’t think that you’re the boss. Teach good principles and let them govern themselves.
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.
I finally see I’m not broken. Thank you
I love the extra international context at the beginning.
Wow. I haven't even finished watching the video and I'm just thinking to myself how much PDA fits my son's profile. It's such a relief knowing that there's a reason why he acts the way he does. Initially, it took us 5 years for us to get him a regular ASD diagnosis because no one believed us. Listening to this video makes me realize that the diagnosis would've been so much faster if the drs acknowledged the PDA signs.
Honestly, as inconvenient as these PDA traits are both for myself and those around me, I’m not really upset about my brain being wired this way. It seems normal and healthy to me to desire autonomy and to not want to do things one can’t see the value in.
Anyone else feel this way??
I see you!!!!
Same
I like myself the way I am, but missing deadlines is a problem...
@@ConnoisseurOfExistence agreed, it certainly causes all kinds of problems for me as well. But like… I don’t think it necessarily has to. I think if if society was set up differently, if people parented differently, etc. That PDA folks could potentially struggle a lot less.
@@beemixsy same lol but I think if I’d been raised by parents who understood me that wouldn’t have been the case
There is not much more upsetting to a true PDA’r than telling them that nearly all their behaviors are NOT their choice but instead being caused by a part of their brain that they can’t control! 😂😅
I don't see it that way. No one's choices are their own...
I find true relief that it isn’t my fault I can’t get myself to do things, even when I would try so hard. I was told I was lazy my whole life by my mom, who would force demands on me and when I couldn’t do them, add even MORE and yell at me for not being able to, and threaten to kick me out even though I was incapable of holding down a job due to my anxiety. I became and still am an extreme fawner as a result, doing everything I could to please my mom, and quietly exploding in tears daily alone in our studio apt bathroom cause I had zero privacy.
And I could never refute her words, or explain “why?”. It ruined my self esteem to say the least and I couldn’t handle life from middle school on. I was basically the Bruno madrigal of my school, I hid from everyone, terrified of socializing and ate lunch under the stairwell from constant burnout at school and home. Had no energy to keep a friendship. I had to let my amazing friends go, and I thought it was my fault, cause I was becoming a monster due to the stress and I couldn’t keep a healthy relationship with them anymore. I was literally drowning every day. And everyone would blame it on me, and I had no explaination for why my life was heading downhill in such a chaotic mess. It was terrible. I embarassed myself constantly as I was loosing my ability to mask day by day. The only thing that kept me going was hope: hope that I would figure out what was wrong with me. I was desperate for a reason, an answer to my constant “why?”
Knowing pda exists is a relief, it’s been months since I’ve learned about it, and I’m still struggle to give myself credit. I’m still terrified. I’m 23. I’m trying to accept myself but it might take a year or more before I’m may be able to not feel like I’m drowning still.
@@Casiielake Nice and honest story, thanks for sharing!
I'm not Christian but once described PDA as feeling like demonic possession
@@Casiielake Thank you for sharing your story.❤🩹 Its mind boggling how simmilar it is to my life. You really helped me with this.
Not diagnosed (just my brother ADHD) - in my country diagnosis and mental health problem gets gaslighted - you are lazy, stupid or just a looser. (and help is Expensive af and hard to reach.) So accepting myself as I am and functioning trying to avoid burn outs and melt downs. Am currently trying to figure out my way to get out of family´s clutches and hope to function better in different conditions (plan is there. just.. the way to get out is so far away and overwhelming). There is so much to do and it gets too much.
Dogs help me - simple pleasures, so that end is not the answer. Sorry for the rambling. Better go. Take care 💌
thanks for this Diane. it is very recent for us parents, I feel relief that I can finally name/describe the difficulty my child has. I feel the freedom to say properly what it is rather than try to work with usual strategies for ASD that don't work for him, thank you very much for what you shared in this interview!! ❤❤❤❤
Thank you so much for this video!! It was so validating and informative. I look forward to sharing it with those close to me.
Also, I would love a more in-depth video about strategies for navigating PDA, ESPECIALLY for adults with it! But also parents/children.
I am autistic with PDA, and so is my partner’s son. We’re so alike, I swear he could be mine. I watch them struggle so much in the same way that I did with my parents, and I feel like it’s my mission to help. Fear of my authoritarian father was the only thing that kept me in line, and all that did was contribute to my C-PTSD lol. Thankfully my partner is a gentler parent, but because of that he gets very frustrated that he can’t get his son to do anything. I empathize so much with both of them.
I like the idea of talking in non-directive ways, but I do see a bit of a problem with this for both myself and the child. Being autistic, we are very literal and often need things to be super direct or else we just don’t understand. This caused a lot of issues for me growing up. Often because of their wording, I wouldn’t realize that my parent wanted me to do something. So I wouldn’t do it, and they would get upset because they couldn’t believe that I just didn’t understand what they wanted.
For me, to get anything done I seem to need to have a solid understanding of the WHAT and the WHY, and it has to feel like it benefits me in some way. Because then I can do the thing because I WANT to do it.
And honestly, as inconvenient as these PDA traits are both for myself and those around me, I’m not really upset about my brain being wired this way. It seems normal and healthy to me to desire autonomy and to not want to do things one can’t see the value in.
I was diagnosed with autism in 2020, I'm 44 now. I recently started occupational therapy in order to be able to take care of my home and just function in general. Starting this therapy, I've cone to learn just how much demand avoidance affects my life. I was supposed to clean my ac unit as homework between the last two sessions, I got to pick this task myself, yet every time I tried to do it (a 15 min job), I got stuck. It went so bad that I couldn't get anything done, because I was thinking I should do that one thing first.
Thanks for sharing the title occupational therapist. That's what I need. I didn't know it. But I also have devastating anxiety.
So unbelievably relatable. Definitely need more research and awareness of this.
In the past 18 months, I've suspected that I have undiagnosed ASD (I also have ADHD which I am medicated for) At first I thought I also had avoidant PD, but I"m glad I was recommended this video. PDA is 10000000000000% me. When I was a minor and into my 20s, (32 now) I was able meet my needs and get things done with some difficulty, despite this I was able to meet the challenges of pre-med higher education and matriculate into medical school at 27yo. While in medical school, I became chronically ill with an undiagnosed condition that I am still seeking diagnosis for.
Heavily masking in the educational/workplace, plus having this chronic condition, on top of the extreme stressors & demands of medical school (clinical rotations/board and shelf examinations), dealing with significant covert/overt racism, then having an additional personal life stressors involving my close family became the last straw and this lead to a major emotional shutdown in my 3rd year of med school.
Significant executive dysfunction caused by autistic burnout, the inability to keep up with daily life demands AND mandatory school administrative demands (educational paperwork (not assignments for grades)/checklists) lead to my eventual dismissal from school.
I've been extremely hard on myself for this because I couldn't understand why I couldn't just DO all the things. I love medicine and every part of the learning process and clinicals. Ever since the major shutdown, it seems that my ADHD and ASD symptoms have gotten much, much worse. I am unable to get anything completed even after without that high stress environment.
High Anxiety (I had my first panic attacks in medical school), excessive sleep, extreme fatigue, mental fog, memory loss, Initially I believed it was just depression, I am slowly understanding that due to the circumstances mentioned above, I am dealing with cPTSD, increased executive dysfunction, autistic burnout and PDA. Now that I am aware of these aspects, I feel that I can effectively seek therapy for coping and management so that I can continue on with life and not feel so stuck.
THANK YOU SO MUCH for your work and focusing on this topic (and bringing awareness of PDA to the USA). In all my medical education and even my adult and child psych learning and clinical rotations, we learned VERY little of Atypical Autism and High Functioning Autism. Videos like these are helping me with documenting what I would like to focus on in therapy when I start so I can be knowledgeable of this and really advocate for myself and my mental healthcare just as I advocate for my physical/traditional healthcare in the medical setting as a patient.
It's too early to tell, but I think I would like to work in this field and bringing more tools and research to ASD and PDA it is MUCH needed and I wish this was identified earlier in my life for better coping mechanisms.
I relate to so much of what you wrote, so thank you for sharing your experience. I managed to finish school but the burnout and PDA for me creeped in after about 5 years of practice. It was a nightmare. Still is, actually, but at least now I'm learning WTH happened.
Really wanted to say though that I hope it pans out for you to specialize in the field and have the opportunity to contribute with your firsthand experience and perspective. That's exactly what is needed, more professionals who know exactly what it feels like!
do it!
Such a tremendous personal contribution and thank you for time you spent. Very insightful for me. I pray you have found new ways to work through challenges of PDA.😊
Changing term PDA to something else might help make it more understandable.
Examples
? : Profile of Demand Avoidance
?: Persistent Drive for Autonomy
?: Panicked Demand Avoidance
? OK: Demand Avoidance
X: Pathological
It is not always that people don’t want to do something; they often can’t or if they do it then it will cause much upset so they go into a certain control and autonomy mode.
Definitely genuine approach is needed.
Flexibility and understanding, ability to listen and observe is important. Being aware that the person cannot always do something that they could do before. The person has a limited amount of fuel . If it is used in one area then there might not be enough available for something else; others cannot often understand that so giving others control is a problem. Emotions use up energy.
Important point, the PDAers often cannot do things that the PDAers want to do because of the pressure. The pressures and expectations use up energy that would otherwise be used for the action itself. It makes the day stressful.
I have searched my whole life for a relationship of any kind (family/friends/relationships) that wouldn't put any pressure on me but would walk alongside me. Even someone asking me what I want for dinner causes me total anxiety and I just can't deal with the pressure of making a decision. I have to be able to do it in my own time. I can't stand people praising me or asking me about my stuff, but I do want people to mention stuff as though it's not a big thing. I totally resonated with this video. Thanks ❤
In the case of the making up bed, you do like this: You don't make up your own bed, but you go to your kid and ask them if they can accompany you for the morning routines, cause you enjoy their company. You get them to your bedroom and say "Oh, I have to make up the bed, it's so hard, I hate doing it. Can you help me please, I struggle, I need your help". If they say "Why do we need to do it mom/dad, let's leave it like it is?", then you proceed to explain them that you might have guests (or they might have guests some day) and their guests might judge them badly and talk behind their back, if they see the unmade bed, for example. And don't expect them to understand right away, give them a good reason and let them think on it for a period of time (days, months...). Eventually they'll help you doing all the beds, because they actually care if you feel good or bad and have their compassion, but would avoid helping you if you phrase it as a demand or order. Don't expect them to recognize you as authoritative figure and simply comply, work with them as a team, be their friend. When they decide to help you to make up all beds (may be right away, if you can genuinly phrase it properly for them to get them into the team), then you can tell them that it would be more efficient, if everyone make up their own bed.
my immediate response wouldve been "i dont care about a bed being made or not, why should company?"
edit to add: "why dont we just do it if we know we have company over later? or not have people over at all if you stress about their judgement of the house? why would we want judgy people in our home?"
My 10 year old I am 100% sure he is PDA and it is so frustrating to not have it recognized here in America. I wish this would make it on the DSM.
As a 54-year-old PDA diagnosed at 52. I can tell you why it's not the same as Asperger's Asperger's has been taken out of the DSM. I had two children on the autism spectrum. My daughter, who is PDA actually much more "unwell" and would have been considered Asperger's. She's had 10 suicide attempts. She lived in and out of residential cares for 5 years. Half the problem was nobody believed me when I had her tested at three years old. My son, however, was diagnosed at two years old. I was not diagnosed until I 52. B I have had major depression, anxiety, CPTSD, my entire life, because of abuse of parents that thought I was being oppositional.
This has been invaluable in helping me understand a loved one. Thank you!
We have diagnosis of ADHD and Social Pragmatic Communication Disorder amd suspicion of ODD, but i think this makes more sense. Not trying to say i know better than doctors, but i know HIM better than they do.
I thought this was just me and a few members of my family. My dad always just said I was soo stubborn. It’s devastating when you’re in the middle of doing something or about to do something and someone has to ask you to do it. The entire task is over.
As far as more ways to ask your child to make their bed or other things you’d like them to do. I will use questions like, “do you want me to start breakfast before or after you’re done making your bed?” Or “do you need help making your bed?”.
this is scaring me bc it’s very accurate and it’s shocking me to my core
I am autistic and this is me without a doubt. If someone give me permission I lose interest. If I’m told not to do something, I am going to do it. I spent more time in the principles office than In the classroom. I am an example of when a kid falls through every crack. But at least I pay me taxes
Interesting screen name
@@heedmydemands thanks I made it myself
I do find that being told I'm not supposed to do something can make me want to do it. One particular tale from my life was a time when my sister and my best friend and I would always smoke weed together and bought it from this guy, so one day my friend was going on a trip so she didn't want him to give it to us while she was gone and we found out about it. So we were like o man she doesn't trust us well we'll give her a reason not to trust us lol
I don't. Lol
the one about the book i relate so much. i have my favorite book in there and every time i start it i get so anxious i can't even read my favorite book.
Aw that sucks. I like your screen name
I have PDA and if someone tried the "I wonder what we could do to make such and such better..." I would instantly feel like I was being manipulated. I'm very difficult.😂
This interview is so timely for me and so well described!! Diane Gould just described my biggest issue perfectly!! She truly understands the exact thought process!! I feel relieved to hear her understanding!! I’ve dealt with this but couldn’t give it a voice!! I’ve only recently discovered that I am on the spectrum at 72 years old! I’m so grateful for this conversation! I have thrived when I had autonomy at work! But recently I have struggled with my own environment at home. This discussion has opened my eyes as to “why!” I honestly didn’t expect someone to be able to articulate this so perfectly! Now I know what I am dealing with!!! Thank you!!!
I felt inspiration reading your experience as it almost mirrors mine. Thank you for writing so sensitively.😊
Thank you, my daughter fits this with out a autism diagnosis. I was fearful of an odd diagnosis and have by insinct, and maybe some personal experience, used effectively some of the techniques in this video. With this knowledge I can be more empathetic and effective in helping her thrive. Again Thank you.💖
My diagnosis aged 47 was Autistic Spectrum with a PDA profile. It explained so much as to why I am how I am.
Thank you so much for this video, I have been struggling to explain this very thing to people who keep doing this and then wondering what is wrong with me. I can show them this to help me explain to them. Thank you.
Great video. Finally we're starting to understand our autistic son is a PDAer. This was really helpful. Thank you.
I am so grateful for this video 😊 Thank you so much!
If its my bed, why are you telling me what to do with it; its autonomy is in reference to me.
So it must be your bed then, if its your bed because you control how it should be then you must think I'm yours to control aswell.
So you are forcing me to make your bed.
Then you say as an addition "forever".
I will no longer use your bed,
I will make it once and sleep on the floor.
If you ask I will say I like the floor and make sure that my sleep gear is tidied up . That way I am in control and you can't ask me to do that again.
If the floor is messy and its mentioned that I sleep on the floor so it should be clean. I will sleep on the couch.
If its further pushed that the couch is dirty and I should be in the room, you are forcing me to be there and I will trust that you will forever think I am yours to control. You lost trust.
All you need to do is have a valid reason for it to be made. How it would benefit them and their interests.
Then lead by example. A valid reason is that research says that a cluttered space is a cluttered mind. There is less to do when things are tidied.
Logically applied emotional intelligence.
The bed is happiest when it is made and tidy. Nothing is perfect, but it is happy to be righted..
like a helping hand out of a pool.
Common sense
The bed is made to be utilized in many ways
-Most people use it for sleeping on
Sheets are designed to cover a bed for the protection of the bed and the comfort of the owner.
The common sense of the design is that it is most right when it is ready to use by the majority of people.
Sheets folded on the end of a bed is as right as a bed made.
It is ready to be used.
Preparing it is a service to a guest or a future tired you, as comfort is difficult to account for when exhausted, but you will disrupt your sleep if your not prepared.
So common sense dictates that if the bed is flat and perfectly made as it was designed and tested to be, you will eliminate a negative factor to maximize your comfort in an awake state , sleep state and a passive environment state .
Thus the bed doesn't need your attention anymore, it is content.
Another example is... garbage on the ground, it wants to be where it needs to be, if you leave it someone else may handle it.. but if its a bird or dog.. they may think to eat it, so if you manage it now you eliminate that chance of it going where it shouldn't. Protecting the environment around you. Thus content.
Yes.
@@M.Shepardbee The logically applied emotional intelligence thing is really interesting, I might try using it for getting over tasks, thank you :)
My 26 year old adult has PDA. I've known since investigating 10 years ago and being in Canada folks had no idea what I was talking about :( Being our youngest of 3 we had to change our parenting style 100 per cent. It is difficult to always watch our language in asking him to do anything. We must change the way we verbally present things to him. He works off and on only...when he needs new instruments. He masks to others as a musician. Our young man is amazing and overcomes so many obstacles in each and every day.
i dont think he *masks* "as a musician" i think he might just be one of them lol
One of the most difficult distinctions to grasp, for those who don't know PDA firsthand, is that it is not ODD. It's not said enough and I'm glad this was pointed out.
THANK YOU, Dr. Reitman for your questions, I would have asked the same! And THANK YOU Diane, for this perfect description of PDA! Unfortunately in Hungary PDA is still not recognized.
Currently trying to educate school staff about PDA for my 4 year old son. They literally didn't diagnose him with Autism precisely because of his "socialness".
Wow Diane you are terrific! You really get it! Thank you for leading PDA North America!!!
2:00 I think it’s a mistake to prefer the “pathological“ title for PDA over the “autonomy” title. The two titles work together, and I much prefer autonomy over pathology, even though “pathological“ is honestly more to the point…
16:00 Very good example and explanation of “unable” vs “unwilling”.
Great conversation. I had no idea PDA existed until a little explanation CZcams short from Casey Ehrlich of At Peace Parents explained my son to me in 1 minute! I have been on a journey to educate myself since...
This is great information! I grew up recognizing I was different, but the other kids in the family were REALLY different. That different shakes out, in my view, as ASD. So, I grow up figuring out how to make my own way in the world. Turns out, ASDers are attracted to other ASDers, especially in our teens and 20s. We got married and had a son a few years later, then got divorced. Now that child grows up with what looks like a double-whammy of ASD. He grows up and has a child with someone similar to him. I worked my rear off trying to figure out how to raise my son which was a creative adventure swimming against the firehouse of social and familial criticism. My grandson looks like a full on concentration of the generations gone before.
So, that's the scenario. Now, I'm trying to help my son, who sounds like a PDAer (BTW, I feel like a PDAer, too!), is struggling with how to raise his son who is a PDAer. My son refuses, most of the time, to take up any of the suggestions I make, but just can't bring himself to do it. He is trying to get his son to do things -- he looks like a PDAer on steroids! It is soooo incredibly hard. HOW do adult PDAers with PDA children follow the recommendations of how to raise their PDA offspring!?! I cannot have success sharing my insights, even if I used all of or any of the techniques you recommend, it does not flow downhill to the next and the next. I am just beside myself with trying to help my own family navigate this space when it is almost impossible to transfer the techniques or approaches to even one generation!
We cannot get this kind of help fast enough!
Same!!!!
@@crawfordroses ♥️
as a PDer; I can sense manipulation and recognize it as another attempt to control. Collaboration (IMO) is realizing that the goal is my choice. If another person has suggestions for me; they need to be explained. As I understand how things (might) work; I can then make a decision whether or not I choose to participate.
I agree. Manipulation produces a knee jerk reaction out of me to automatically say no, avoid, and or shut down whatever demand they tried to trick me into.
I really appreciate this video.
What works (from a parent’s perspective): remove all demands, allow the child to unschool, stop all ABA therapies, collaborate with your child to allow them to feel a sense of control, CONSISTENCY, offer direct questions and answers. Be authentic and don’t try and manipulate them, they’ll see right through you.
Thanks. I enjoyed this a lot 😊
I'm PDA, and use to say to people that shouting at hens won't make them pay more eggs!
*lay
As an autistic adult, it should not be called avoidance, rather it should be more something like “paralysis”
17:25 yup. I do that as an adult.
What if I have only been diagnosed with inattentive ADHD as an adult, but a lot of this feels familiar? I've never been tested for Autism, but I would not have been for ADHD either if I had not requested it. My husband has not been tested either, but a LOT of this stuff fits him too.
ADHD and ASD have a lot of overlap anyway, and seems to overlap more with PDA. Some are also diagnosed with both.
I have an adhd son that fits the bill. I saw one study that found an even higher correlation between adhd and pda than asd - but that is not the prevailing thinking right now. I am not familiar enough yet with the literature to know if the study was good quality or not. So I guess I’d say… there might be something as yet undiscovered between adhd and pda. It actually makes sense to me when you look at how some adhd kids get labeled odd… I wonder if that’s really pda in some of those cases.
@@elizabethsavage4656 And yeah I think I heard like something like 60% of people with one also have the other? That seems high but I guess for many years if you were diagnosed with one the other couldn’t be diagnosed so it is hard to know for sure right now.
Suoer common for autism to be missed in women diagnosed with ADHD.
I have read about PDA rarely being associated with ADHD before, not just autism. So definitely if you relate to this, you could be PDA as well. In my opinion, this is either because you also have undiagnosed autism, or something in the brains of some folks makes enough similarities between ADHD and Autism, that PDA ADHD is possible. Reference: pubmed.ncbi.nlm.nih.gov/32682221/#:~:text=Background%3A%20Pathological%20Demand%20Avoidance%20(PDA,deficit%20hyperactivity%20disorder%20and%20impulsivity.
I don't just want autonomy and control, I want someone to do it with that I trust.
Great information
I love this presentation by Diane, she is amazing. I am adult diagnosed with Autism and I know I have PDA...when I heard her talk about the bed-making, my first thought was, why does the bed actually need to be made every day? It doesn't. Don't make them waste their energy on that, please.
I have a son with PDA. You do not need to ask how you can tell the difference with a neuro-typical teenager. PDA is not normal teen resistance. This is something else. Those of us who parent PDAers know the difference
Its not really that understood or accepted in Australia either 😢 but getting there thanks to people like Kristy Forbes. I have a child with a clear PDA profile.
I totally relate. 58, undiagnosed
Nothing about us without us
I wish we could teach society to stop judging. I judge myself and only want my own criticism or praise.
How about working on a bachelor/masters thesis or doctorate? How to get through that with PDA?
I did not go to school starting in 7th grade, which is when my skipping history started. It was really difficult for me to be in the environment with changing classrooms, all the noise, it was not the schoolwork as much it was the social thing about it all. Starting in 4th grade I really started to realize I was different than other kids. I just started to skip school. The truant officers were looking for me at the malls, or downtown, etc. I was at home doing my schoolwork for the next week. By my senior year first semester I attended school on average one day a week to get a weeks worth of homework, and turn in a weeks worth of homework. I went to school on pep rally days. I missed the class pictures, because I just did not know it was happening, nor did I care. I did not have to worry about where to sit at lunchtime or when I could excuse myself and go hide in the library where it was quieter. All this hindsight is 20720 now, but I missed 53 days out of 90 in one semester. The school administration hated me for it, I pulled As, Bs and one C without being there. My mother even told them that I was bored and I was proving they were just babysitting me. I had to sign a contract and have the teachers sign off that I was in their class every day of the week, I had to provide a real doctors note if I got sick, etc. etc. The last 5 months of my US educational system was the worst of my life. Well except photography, and my accounting class. I did not need to go to school then. I have met all the graduation requirements, except one. The next year they had a high school completion program at the community college I could have been in if it was offered at the time. Not GED but i would have gotten my high school diploma. I could have taken a math class at my level, and been a lot happier because I felt more in control of my education. Less demands to turn in homework at that level in the courses I took at the time.
WeIl am 53 now and just trying to finish the golden carrot of my MSc, I am capable, but the closer I get to the carrot the harder it becomes. I end up sabotaging myself.
It’s a shame you couldn’t be homeschooled, you probably would have done great at it. I don’t know much about masters degrees but I wonder if you could try to talk to potential advisors and see if you could find one who was autistic or could understand PDA and work with you on how you could pursue your goal.
So much this. I see you.
My sensory problems are not as acute, and I was a proficient masker, so I didn't end up leaving classes very often. But I was pretty checked out. I graduated with a 2.64 gpa, from a mix of As Ds and Fs. It likewise took me 6 years over the span of a decade to get a BA. Now I'm almost done with an MA in special education, and the experience has been so horrible that I have finally figured out the autism bit. I'm 53. Deadlines are very very difficult and my demand avoidance is not as bad as what you describe. Do NOT attempt until you work with the accessibility department to have accommodations in place for flexible deadlines. Also make sure you have a therapist who can guide you and talk you out of the trees when you get stuck. You CAN do it, with support.
❤❤❤❤ Diane you are a saint❤❤❤❤❤
Also it is a myth that there are PDA appropriate schools in the UK. Although several schools claimed to be PDA appropriate many (ie the ASPRICS/PRIORY group) have now withdrawn that claim as their approaches didn't help their PDA pupils and in many cases made their anxiety worse.
For education approaches see Dr Naomi Fischer's work on autonomous education.
15:55 My oldest son does this to a degree. He will literally fall down on the stairs on the way to wash his hands if I repeat the order or rush him. I also remember doing this when 7 or younger.
My kindergartener, my wife, and my father are on a whole other level. I can beat my dad in chess just by suggesting obvious best moves.
One thing that helps me with chores around the house is deadlines.
16:02 yup. Even at work. Happened today. It was terrible.
I think it, if this is a real thing, it's a gross disservice not to recognize many of these people are overtly, not to mention passively, abused, and this is a response from significant abuse patterns from people who coerce, threat, and gaslight because they are actually the ones with more pathology. A child refusing to take out the garbage is nothing like an adult who has had people psychopathically state they were going to have a person committed (for false reasons) as a means to punish, coerce, and control. People begging for autonomy do so because they have none in their private adult lives among family, spouses, and wider society.
The easiest, most effective, and most ethical solution for dealing with a PDAer is to grant to them and respect the autonomy they demand. Beating around the bush as suggested is as infantilizing as it is infantile. Yes, a "honey-do" list is unreasonably difficult for me to comply with. However, approaching me with something like "My parents are visiting next week and I'm anxious about x, y, and z" puts me in to monotropic problem solver mode. Speaking for just myself, obviously.
What I mean to suggest is that you speak to PDAers plainly and honestly. Communicate your wants and needs, and any other emotional or practical considerations, and invite them to be a partner in crafting a solution. Realize that, to the extent you have a demand of someone, they have power to either fulfill or deny that demand. Also realize that a PDAer is not trying to negotiate a worse outcome for you or themselves, rather, they're trying to negotiate an outcome that is authentic and respectful of their own identity and autonomy and likewise for everyone else involved.
Usually there's severe or easily seen ADHD with the more mild presentation of Autsim, what we used to call Asperger's. My son has been Dx ADHD and ODD then changed to ADHD and ASD. It's the extreme defiance that it's a huge problem for me at home, school, his relationships etc. It's miserable at times.
And being 'locked in' my head doesn't help me starting new projects, even art that l love
What if neurotypical types are ODD (overly demand driven) ? Why should the father care that the bed is made every day?
PDA is a very difficult thing for an autistic person to navigate. The neurotypicals will put you in prison over it even though you are not harming anyone. It happened to me. I must say, they are kind enough to medicate your anxiety away while they are forcing you to do things that you can't do. It is a sick world we live in and the neurotypicals are responsible for the sickness.
Turning statements into questions so that it does not come off as offensive
I am honestly trying all these recommended approaches and nothing works. I feel at times things are getting worse for me doing that and listening about that PDA and actually she got endless demands towards me and I serve her everyday like she is a toddler. While she is 13. Psychologists are telling me she is PDA and that’s how I should behave with her, but honestly I see no improvement following that.
My son has literally said, "Now I can't do it," when he was about to do his school work, but I came in and asked if he'd done his assignment yet. I now collaborate with him to make his weekly schedule by writing his assignments on a wall calendar and resisting the urge to remind him. I will check on him towards the end of the day and ask him what he's done that day or has he done everything he needed to do today? It's like taking the demand out and putting it in their court.
If we providers weren’t confined by the rigors of insurance companies expecting standards of time frames for SMART GOALS, and progress toward those exact goals. They will expect discharge if the client plateaus.
Autistics might be more prone to it, but I find that it's a universal thing. A person who feels free and respected will do things on their own.
I have this tendency but I don't really want to see it as pathological no matter how severe it is😅
I call it Personally Demand Autonomy. I hate being told what to do; even if I am the one telling myself what to do. (I can get more things done the first few hours of the day, then stress begins to build up and I get worn down.) As an autistic/aspie kid; you're constantly barraged with criticism, correction, direction, and orders to do what you are told. (I'm not surprised most of us show up as having PTSD, when we are older.) To be on the receiving end feels like you are in a concentration camp and everyone else has control over you. We're not dogs to be commanded. Anxiety, panic, anger, distrust and stress all play a part. Try talking to them like they matter, instead of just ordering them around constantly. Let them have a little say in some of what happens to them. It's like not having any freedom, and very much wanting at least some. You have the correction of how to address them; to coax in a non-demanding way is a better approach. PDA is hard just to get through all the things you need to do each day. It takes so much extra effort and focus just to get little things done. If I could just jump up and do what I need to do; instead of spending energy and time trying to decide if I can put it off until later, is there something more important I should do instead, does it really need to be done, what's going to happen if I don't do it - it would be so much better. I'm trying. I really am.
CAN'T not wont. Everyone has told me i'm evil my entire life, I'm selfish and so i turned it off and forcefully begrudgingly did what had to be done because my mother demanded it there was no room for no shed just beat me until i dissociated and she finally got tired (looking back i see where she would create issues caked on dirt in the corner next to the stove that i got beat for not cleaning one day she told me to clean the kitchen - i think so she could get the release that came from beating me probably because in her words when i got it out of her at 32 "what would happen when you beat me mom?" would i cry mom? " no you just curled up and stayeds till and SHE TOOK THAT AS AN INVITATION and its all better because she may leave a barbie on the bed the next day and again i am the one who is evil because i made her get there, so at 11 when there was all of a sudden babies in the house and still a massive amount of cruel neglectful selfish abusive people it stopped mattering what i needed and i did what i had to do for them, she kept getting me to school late so i had her drive to work and id walk through downtown phoenix every morning to get to school, i had to get home and see where things were left, there mother asleep noone else in the house, messes, kids arent fed but their mother managed to order herself food and her i am 12 7th grade 2 1 year olds and it went on like that until now at 32 that they are finally big enough and i cant manage to get myself a glass of water i ended up homeless but they still had what i thought they needed someone to make sure they were heard and understood, what i have never had ever in my entire life. i've given up, from doctors to therapists teachers workplaces, there is no absolutely no integrity so all the demands they want you to perform are based on whatever fickel hieracrchal world view that person or group has and will have no bearing on the next group or only some so why bother trying to play societies game? The masses say be and do this when they cant even decide on what it is they are telling to be and do.
The ladys name who was the founder of pda was Elizabeth Newson.
You never named her she passed away in2014
Thankyou so much I thought I was going crazy or control free n why I can’t start anything t reall ends up hurting me somehow
any help with how to request for core needs to be met , like even a script , if your partner has PDA. Autism , adhd ...i'm finding this area very difficult . It feels like he only wants to do it when i havent directly asked , to me when i spell it out directly to others that dont have this , they are relieved but he feels pressurised. I feel like I'm walking on egg shells and it's quite exhausting.
I hear you, remember there are people who have to do all the tasks their partner won’t, it feels like being abandoned.
All of the tools to help were external factors, is there anything the PDAer can do themselves? Incase you were hell bent on being autonomous maybe?
My personal strategies:
Understand WHY you want a task completed. What is in it for you?
I try to complete tasks before they feel like demands. (be v. casual about it: "since I'm in the kitchen already getting a glass of water, I might as well put away the dishes." Executive dysfunction can also make it hard to start tasks, so it's better to just build on momentum from other activities than try to follow a plan.)
Prioritize what REALLY needs to get done.
Delaying a task just a bit might be enough to feel like you have control over your autonomy: "Yeah, I'll take out the trash, but I was actually just about to X, so it will need to wait a minute."
Try to give yourself one day a week where you dont have to do anything you don't want to do. (Its important to recharge. If you don't give yourself a break then you might still get nothing done that day, but you'll also feel bad about it.)
Don't tell people what you're up to because they'll ask about it and cause it to never happen. I need to apply this to my own life
I have 3 children with autism. They all 3 have some similar behaviors and also very different presentations. My 8 year old has particular struggles with any kind of expectation, even ones placed on himself, and ones he thinks are coming. I wont try to explain how incredibly difficult he can be or this would be a novel. I have a good understanding of pda and believe %100 that he is a pda'er. Many times when I give him control and choices and absolutely want him to have all the autonomy he wants, that act of offering the choices will increase his anxiety and lead to an explosion. He also performs very very well at school and I have been told that he must do better with a lot of structure, but structure seems to trigger the anxiety. I am going to try to use more passive language. What about if the child also has processing delay and expressive language delay? Those combined with pda made comminication so so difficult. Sometimes feels impossible. I need to find help/better strategies to guide him. He has services and an iep and psychiatrist has referred him for aba therapy (which has been helpful for 2 of my other children). However, what information can I give to providers and friends and family that will help explain the idea of limiting demands/letting him be in control and how do they "teach" him skills without using a reward system?