I love how you described it as a “claustrophobia of being forced to [rigidly] conform.” That’s EXACTLY how I experience it, and it’s super validating to know I’m not alone.
This is why I hate filling out multiple choice questionaires. None of the choices fits what my true answer would be, yet I'm forced to still check one of the choices. This forces me to lie about myself. It makes me feel like only "normal" people are valid, and it really grinds my gears.
This is so true, I never thought it affected me much until I thought about it after reading this. It is so hard to go through each question and each one would not have an option that fits us.
"... I have a lifetime of experience of other people not understanding my needs, so if someone else chooses for me they're likely to choose something that's not really good for me." 😯🤯 Amazing! This is a game-changer in my understanding of my own PDA.
Yes, so refreshing to hear this perspective. People don't WANT to understand the needs of others, especially children. They just want blind obedience. And if you don't give them it, they will belittle and scream at you, or at best, diagnose you with a mental disorder.
A cardiologist is a heart doctor so unless you’re talking about a different condition, they won’t be of much help in the parenting willful precocious children department! 😂 That said, as an Autistic adult who is dealing with this myself and has also seen this phenomenon come up in business management courses of all places, give all relevant background information regarding what you’d like done and why and be willing to answer questions,, always present a list of several clearly defined choices so as not to fluster her, and don’t try to change a bad behaviour with rewards or punishments if you suspect demand avoidance could be involved in it since that will actually make the problem worse. :)
It actually made me so sad that the little girl was so used to force that she was confused to be treated like most adults expect to be treated, like an autonomous person.
This hit me so hard in the chest ... it's not about being difficult or contrary, it's about someone taking away my choice. It's about being forced into a situation where I might be made to feel uncomfortable and distressed, and not able to choose what happens to me. When someone takes away my agency, I have to go with whatever they choose for me, and nine times out of ten it will be uncomfortable for me because I won't be able to proceed in the way that I know works for me. Added to this is the fact that I have a strong sense of justice and fairness, and other people making me do something is simply not fair. It's not about the one dollar, or whatever it is about on the surface. It never is. It's about respecting me when I say 'no', and not choosing for me. Because when you take away my choice once, I don't know how far you're going to take it, and I'm so scared that this will be a slippery slope towards me being completely controlled by another person with no way out. If that were to happen to me, I would struggle so much to disentangle myself from that situation because I struggle to recognise my emotions when I need to and I struggle to stand up for myself and I am absolutely terrified of confrontation. I can't just say "it doesn't matter this time, I'll just let it slide", because I don't know what this is going to lead to. And this is by no means an irrational trait, it is a very valid reaction to my lived experiences.
@NEW HOPE INSURANCE LTD There is no such thing as a "cure" for autism and suggesting so is disgustingly ableist, on top of peddling your trash. You should be ashamed of yourself
Most of the time, the "demands" are for your own good. So to characterise it as "taking away your agency" is an inaccurate understanding that you may wish to work through. As a parent with a child with ODD you don't understand how difficult family life can be when you have a young person with ASC and ODD.
@@msb120 that's incredibly fucking ableist. Maybe you should stop centering your experiences as an "autism parent" over the experiences of actual autistic people
My 11 year old PDA often tells me that she wishes she could say yes but just can't. This happens even when asked to do fun stuff. There is just to much anxiety around expectations or new things etc. I always prepare her very well before an activity. We talk it through and prepare for it. This allows us to go to the odd movie or to someone's house and so on. This is very different from ODD but easily misunderstood.
I relate to that alot I feel very controlled there have been times when I've gone to do something and then afterwards someone has told me to do it or to hurry up doing it and I've not done it but originally I wanted to do it one main time in my life I'll explain for an example purpose I love art I aways have I was going to my next lesson art and I was very excited because we was doing a particular subject but a teacher told me to hurry up to class when I was but that comment made me bunk the class and go hide in a hallway cupboard until next lesson.
I have a bit of that issue. Actually I have trouble saying yes or no. I’m often pushed into selective mutism when I’m asked to do something or asked what I want, and I can’t speak at all until the right thing is said that my brain will latch onto allow me to respond to. As far as being asked about going and doing things, even if I want to, it suddenly seems like something that’s very stressful to do.
Sounds familiar, but I have that less severe. I used to always excitedly tell people what I was working on, thinking of, and what my plans were, but I've realized in the last couple of years that I should never tell anyone my plans in any way, because once I tell I feel that there is a demand that I follow through and I lose the will to follow through even if I was so excited about it. So then I ruined my own excitement. The worst thing is of course if somebody actually asks about the plan, but they don't even need to say something.
She's fortunate to still have a mother and some absolutely clueless or malicious school officials not called the social to take her off you. Every time it's difficult. Think about that scenario because it's a reality. The problem was parents research things and professionals have "qualifications " I am so sorry for your struggling. Demand avoidance autism was changed to ODD by a lot of ropey psychologusts. In my opinion. 😂 We've understood years.
Your 11 (now 15 I think) year old Pathological Demand Avoidance? I'm sorry but that's no way to describe your child. She's much more than just her diagnosis 😕
My son was diagnosed with Oppositional Defiant Disorder and I knew that was a useless BS diagnosis. Persistent Need for Autonomy makes so much more sense!
@PMbeers I agree. I find I don’t have a big problem with PDA as a term - that’s just me, others are free to disagree - but “ODD” just pushes all my PDA buttons. It’s a loaded term that’s all about how much trouble my own difficulties are making for the person in charge, who apparently can’t be happy if other people don’t do what they tell them to, but thinks I’m the one with the problem! There are other issues with demands that trip me up too, but that sense of unfair judgement is the one that makes me go from zero to apoplectic in no time flat. (I’m in my early 60s and have always been this way)
@@jimwilliams3816 that's a perspective that most people won't ever see. When we ask caregivers what is their goal many often get defensive. The goal of a caregiver should be to protect and teach, not to control
@@PMbeers Interesting. My mother was very willing to explain the whys to me, and I appreciated it even as a child, and it just seemed like the natural thing that everybody should do with their kids. As I've fairly recently become aware of PDA, I've realized that I've always had many of those traits, and my mother had them even more strongly -- she had an intense need for autonomy and was doctor-phobic. I have been thinking that explaining things to me, and letting me make my own decisions, was an accommodation for my traits -- she certainly wouldn't have had any luck saying "do it because I told you to." No one ever did. I love to explain my reasons for things to people, to a fault -- and the idea of becoming defensive about it seems wholly foreign to me. I have long thought I was autistic, and suddenly I am remembering that liking to explain things to people is not uncommon on the spectrum. I also really, really need to understand the logic behind anything to be able to work with it at all, so asking why is not really an authority-challenging behavior -- that's an outcome more than a cause, hence my anger at the term ODD. Like Paul said, it's less about opposing than not being given the tools I need to do the job. Then I do get angry at the person who insists I don't need something I know I do. I used to think my autism came from my father, but I now think he was mostly ADHD. My most autistic traits are ones I share with my mother, but our negative traits are associated with lots of disorders, and I've struggled to imagine she might have been autistic too. I also have focused on the negative ways we were alike. I am suddenly seeing how autism might have been our shared experience, and in some positive ways. We most enjoyed each others' company when we were explaining things to each other. Thank you for spurring this thought process.
I am not diagnosed with autism yet, but what you described here with the ODD is spot on for me. I freeze up completely whenever I feel forced, and I had the worst time as a child with this when people forced me into doing things and I went nuts, and everyone just said I had bad behaviour and was being a difficult child.
I'm watching this as a teacher and trying to apply it to a child doing things dangerous to himself and others like eating playdough or tackle-hugging children (and not recognizing or ignoring negative reactions of the kids he's did it to). Like how do you treat someone w odd that's OBVIOUSLY doing something wrong? I just wanna teach him the right thing but when I separated him from them he melted down and I was like, is he gonna take ANYTHING away from me doing this? A lil at wits end.
The freezing up paired with selective mutism when pushed can be an absolute nightmare. I never really had outburst, but just think bull in a china shop inside me, making me feel like I was gonna explode when somebody wanted me to do something and I couldn’t, but I also couldn’t speak to them to express why, not that I knew why at the time. It does still happen to this day sometimes. It’s so frustrating.
I had an abusive school teacher and I was always scared to ask any questions because she was authoritative and places the difficult kids on the outskirts to isolate them and embarrass them in front of the whole class
Keep using positive phrases - be kind, be gentle, be patient. These offer choice becasue the person can select how to be kind and gentle etc. but saying the negative like ‘stop….’ is a closed instruction
Aspie raising Aspie here. One of the things that I struggle with personally is that some of my daughter's sensory/comfort needs are diametrically opposed to mine. As an adult, understanding her needs I try to approach things sensitively and compromise where I can, but as an Aspie I sometimes get to overload point without warning which compromises my ability to deal effectively with her. Two key points on which we clash are as follows: She is very sweet and one of her main comforts is always having something in her hands, which is not a problem, the issue arises when she wants me to have the same comfort. She will hand me a toy to hold and expect me to keep hold of it. I can't stand having something in my hand all the time. I have explained to her that I'm touched that she is looking out for my comfort and security, but mummy feels different about holding things. I tell her that I need two hands to do certain things, so I can't hold the toy and complete the task (something she is grudgingly coming to accept but I am handed the toy back as soon as my task is done). There is no particular value in the object I am handed, only in the fact that I have one. I have tried showing her that I am putting the toy in a safe place, I have tried having it right beside me, I have tried quietly "losing" the toy, placing it in a pocket or pouch. I've tried securing it to my wrist with a hair tie. As soon as she notices that it's not in my hand it is replaced or substituted. It really distresses her, despite my constant assurance that I'm OK without the toy, that I don't like having something in my hand all the time, that it actually really bothers me to have it in my hand the same way it bothers her to wear clothes inside the house. She seems to have a blind spot and while she does accept this approach for a lot of things it doesn't work here. I can't handle the constant sensory input, I can't handle the controlling aspect of her not giving me a choice (which I have also explained to her) and occasionally I snap and get to meltdown point, the toy gets thrown, I yell, because at that point I can't control my volume and take myself outside to give myself time to "reset". When I have I come in and explain what's happened and why I got to that point. This works for about half a day. I have also explained that I really don't like that I am pushed to the point of meltdown (she hates her own meltdowns) before she will listen to me. I have also point blank refused to take the toy (this stresses her badly and sets her up for multiple meltdowns as she is so anxious about my not having the toy that she can't deal with things she can normally cope with). We are making small progress, but it's painfully slow. She's nearly 4 and she's been handing me toys since she was a baby. This comment is already too long so I will skip the second issue for now. Thank you for reading if you got this far.
I got this far. Thanks for sharing. That's a difficult situation, especially because she is so young. Sticking to your own personal boundaries is important - as you noted. This is something that she will need to learn as she gets older as it is not a feasible solution to expect others to hold a toy for her all the time. Sometimes things are out of our control (and/or are not feasibly to ask for). I watched my little nephew try to put on his old gumboots the other day. They were too small (he'd grown!) and the didn't fit. He tried and tried, and cried and cried when it just didn't work. Nothing would help. But that's just the reality. He couldn't get what he wanted, and the only choice is to learn to deal with that reality (somehow).
@@autismexplained it's especially difficult to find a balance in this situation because it is an expression of love for her. She finds great comfort and strength from having a small toy constantly in her hand and wants the same for me, she just can't conceptualise a different view on this because it's so important to her. It's the same sweet motivation that makes her strip all of her toys of clothes, because she is more comfortable without them herself. It's that Aspie compassion so many people think we're without. I understand it. I can't walk past a man in a suit and tie without feeling like I'm choking, or a woman in high heels without my feet aching. They may be perfectly comfortable with it themselves but just seeing someone else wearing clothes that I can't tolerate for any length of time makes me cringe. It is as you say just something we have to get used to.
@@cerridwenrowan I read your comments and really felt for you and your daughter. You may well have already tried this, but is there a substitute gesture or thing you could teach your daughter to do instead? She might feel better if she can still express the sweetness through a caring gesture, but tailor it to something that works better for you. I really empathise with you not wanting to “trample” on her gesture of love 💚 Also when she’s a bit older, she may find the concept of “love languages” useful. My autistic partner and I found it very helpful in clarifying how to convey love and affection in a way that the person truly wants to receive it. There’s loads on stuff online if you want to look it up. Wishing you and your lovely daughter all the best 💚
@@brindmusicnerd thank you how thoughtful. We have both grown and learnt so much about ourselves and each other in the 2 years since I commented I am pleased to say this has been worked through and resolved x.
This is so helpful to me. I'm a hypercompliant autistic (think "Ella Enchanted") but my oldest has a lot of demand avoidance--knowing how to deal with it, and being able to remind my inlaws that it's an anxiety response not disrespect or defiance is very helpful.
Daniel Goleman says basically we should all become fake people pleasers, and therefore that will improve our lot. "Emotional Quotient . " I'm ADHD, PDA, which evolves into ODD, then sometimes....uh yeah. Never heard of "Ella Enchanted", oh but such a pretty name
@@LSD-33166 Ella Enchanted is a retelling of the Cinderella story in which the titular character is cursed with obedience by a well meaning but not terribly bright fairy. It was made into a movie some years ago, but I think the book explores the consequences of such a curse more effectively.
I have thought I had ODD since I was a child. Only recently have I found the subgroup of EDA/PDA. I don’t want to defy - I just get extremely anxious when someone tells me to DO anything. Growing up with abusive parents who would enforce strict rules that they would not follow themselves blew my mind as a growing child causing me to never want someone to think they know what I should do next. This affects me socially too and when I’m aware of it I HATE it, someone can be talking to me and giving me a non verbal queue and I will PURPOSELY avoid being effected by their queue??? Like I know they want me to see/do X and it would be normal to follow but I refuse… made it really hard to make friends back at an age that it really mattered. It’s wonderful that neurodivergent’s are sharing their experiences and helping us all discover more about ourselves.
I also used to deliberately ignore nonverbal cues from other people! It was definitely out of a need for control. Never heard anyone mention that before. Thanks. Same with verbally implied "requests", like if someone was fishing for a compliment or sympathy. I would also get somewhat annoyed when I would do something on my own and then someone else would say "thanks" as though I did it specifically to please them. This was more in elementary through middle school, I've developed a more secure sense of self since then so I don't do this as much. But my gosh it was very hard to make friends. It's hard to explain these tendencies to people without sounding extremely antisocial. It's not disliking others, it's reacting to anxiety from feeling external demands or compulsions. The paradox is that I'm also a huge people-pleaser and often have trouble making decisions for myself in the first place.
Thank you so much. My husband was diagnosed with high functioning autism last year. Control is VERY important. I also work with small children in dance classes. Force NEVER works. Inviting and giving options brings the most resistant kids in. And they are only resistant because they are constantly denied choices day in and out.
I only just realised today that I have PDA and what you just explained makes total sense to me. Unfortunately the world is not going to change to accommodate my needs but having an understanding of what is causing my stress is helpful in itself.
Yoga mind control techniques can help you because you can have the mindset that "I will deal with issues as they arise because I am clever enough to figure out coping strategies". Things do go wrong sometimes but that is life. Deep breaths and try to survive it for the good days!
Yep, that parking situation is already pissing me off sitting here in my chair, much less in the moment, lol. Sounds just like every time I've exploded about "the principle!" and my wife is going "Just pay $1!".
Damn Paul, this is my favorite video of yours. I knew I related to you, but your description of the claustrophobia and tyranny of decided decision points is... A+! I'll save that one to explain my own issues, thank you! I'm working a 75hr work week right now for the first time in my life, and it feels like being in actual prison even though its at home. I have been trying to figure out why I'm struggling so much when the work isn't even that hard, aside from my ADHD making it hard to stay on task. It's this. The feeling of being trapped. Unable to move or do ANYTHING creativly. It's a VERY dry work flow, move things from one tool into another. And EVERYTHING has a 'right' answer. There is no room for interpretation. It's making me feel like I'm choking out and gasping for air every time I try to work on it. I didn't understand, I've never felt this way at work before... but you 110% nailed it w/ this video. My (new) boss in my (new!) dept has already decided what we're going to do. And now I ONLY need to do it. No other decision points or unexpected events to look forward to handling. No mystery, no unknown. Only progress. No way for me to inject any of "ME" into anything. Any ol' mook could be doing this rote work. It's hell. But luckily it's a one-off project so it'll never be like this again. I might have quit already if I joined the department and it was ALL this! AND it's juuuuuust complicated enough that I can't just zone out and do the work too. I keep trying, and I keep making zero progress. It's a new and horrible 'perfect storm' zone for hitting every single deficit and mental issue I have, lol. It's been a fascinating learning experience, at least!
I'm a nearly 40 year old man who, after months of extended discussion with my therapist, was recently directed to information about PDA. When you were describing triggering situations and visually, bodily coping with the emotions that merely recounting those stories were bringing up, my god I felt that. I sympathized with that so hard. I understand completely because I'm exactly the same way. I'm dealing with the frustration resulting from the fact that PDA has existed as a diagnosis for decades while I've only learned about it in the past few weeks. Lack of critical information, and all that.
Thanks Paul. "Give as much information as I've asked for". This always bugged me. Especially when people repeat the last thing they said instead of starting again where I've asked. Also saying - don't tell her/him - they need to learn on their own - is withholding information that we need. I believe we learn most often from *being told* the rules/ expectations/ boundaries.
That part hit me hard too because I have that problem at work. I put a lot of effort into asking for exactly the information I need. But the other person often glossed over it and only answers the first or last question. I don’t like having to pester people but I really need all the answers to everything I asked before I can do my job. And because I greatly prefer email to verbal I ask it all in email and then they want to call a meeting to address it because they can’t think without talking. But I can’t think while talking. It’s a mess sometimes.
@@carldmorris2 Just wanted to say: DUDE ME TOO HOLY CRAP. Exactly this, in all ways. The "here's my 6 bullet point questions, please address so I can start" situation is exactly me, and THEN they don't read it and just say "Can we set up a call instead?" and I just sit at my WFH Office desk internally screaming. NO! I won't remember all my questions, I'll be overly agreeable and unable to get my own needs met, and I also won't remember 95% of what we talk about, YES EVEN WITH NOTES! I can't run my SocialMask.Exe along with my WorkPrep program! Or my real worst enemy, the "Technically this answers the question, but with minimal information" people. They address the exact, single scenario I'm in that I use as an example, but then they don't tell me WHY that decision is the right one. So the next time I run into it, I have SOME kind of info, and it SEEMS like it SHOULD be enough since it's what my boss or w/e provided, but yet I find myself with a TON of grey area and questions still. Then I have the complex about asking for more details and being needy. JFC it's soooo difficult to get people just BE! CLEAR!
@Dr Yuching Lee I feel sorry for your son. Someone should call child protective services on you. He needs caring and patience and to be heard and believed.
@K.A. Fortunately we do not need to worry about Dr. Lee’s child, since I’m pretty sure she is a bot and so has no children, LOL! These things are crawling all over the neurodivergent boards now (mushrooms are a common pitch) and it’s pretty scuzzy behavior regardless.
I think the data-gathering phase is extremely important but also anxiety-inducing for everyone. Sometimes I'm not even sure what data I'm looking for. My mind is looking into all contingencies and try to understand the whole process.
That example with the paid parking reminds me of so many times I've encountered hidden charges and been really upset by it. The price also matters to me because yay lifetime poverty, but the point is that at a certain period of time before the money was spent, I had made a decision about how much I had been willing to spend. It's like your car parking. I don't drive, but I usually walk or commute via public transport. Before I even leave the house, I have an expectation that I'm going to spend at most $5 on transit costs. I would be stressed if I found out I had to get a taxi home or I hung out with a friend and suddenly they wanted to share a $50 taxi. I would wait until the first bus in the morning (usually 6 am) to avoid paying for a taxi. Why? It's not a cost that I planned, and there's this small thought in the back of my head that goes: "What if this starts happening every day? Are you going to make it your habit to start getting taxis everyday? There's no way you could afford that."
You are not alone in your feelings about hidden charges... Going out to lunch with a friend was ok as the restaurant was within budget - until the friend ordered wine with the meal. Luckily, she was sensitive enough to pick up on my discomfort, and we each paid for what we had... and we could save the friendship. I'd guess that your taxi home would have been ok if they'd offered to drop you off without charge... it's the sudden change that results in the easiest answer, "no"...
@@MNkno I know. I can't stand it when you go out with friends for a meal you can't afford, you pick the cheapest thing you can find, then they split the bill between you and you're paying for everyone else's. That is so unfair!
5:15 offer important information + teach them to ask for any more information they think they need. Teach them to be aware of their own needs and thr reasons ❤
This is why I hated school, because you HAVE to go and there's no choice or autonomy about this thing that takes up most of your time and energy. I ended up skipping as much school as I could while still passing my classes, but I still felt so trapped and miserable. I feel much the same way about jobs, but at least I have some choice over what jobs I do
Explaining school to a homeschooled child on the spectrum got a reaction of "you mean to tell me that you can't just leave when you want to? you can't learn whatever you're interested in? you have to go there every day, all day? why does anyone do that? it doesn't make any sense."
lol, yeah. the last 2 years of highschool I skipped almost everything and learned everything at home (which was possible because of the new covid file cloud systems)
This is the most accurate description of how I feel on a day to day basis. It’s not that I’m being difficult, it’s that I need to know all of the information that’s important to me so I can make the best decision for me.
YTer AUsome Training gave an amazing analogy for PDA: Imagine the difference between someone asking you for a candy and you have an entire bag full versus them asking innocently and you have just one or two candies left. The change in vibe is palpable for anyone, but it is cranked up to 11 in expressions of PDA
@Autism Explained … Such great explanations, especially for me about the girl at the school not being forced and responding much more comfortably. About PDA, pathological demand performance is such an awful name and shows lack of sympathy for the challenges of the person. 😢 Perhaps, my thought or feeling is that another description would be much better and accurate such as Panicked Demand Performance. An example: . I recall many times when wanting to do something (and this can happen to anyone even if not having PDA) , and I had already started the steps with great effort and time in my mind several days in advance working on the project and setting it out, and then after some days (more precisely I began a couple weeks in advance devoting much time, but three days was solely to the project with hours, many hours in my head focusing on the project) and then I started the rough details and organisation on paper and had a good idea of how to proceed which would have flowed quickly out and been done in one day with the next day to revise and perfect, so two days until perfection, and a third if I wanted more perfection or had interruption. However, the boss got nervous and a bit mad at not seeing anything, and actually she was the one panicked (a different panic than one might feel with PDA probably), although the project was not due until the next week, or rather two weeks later with the draft due the next week. So the boss, she did it herself, and had another staff do another part of it. So basically over two weeks of my work, nearly three was wasted. What they produced was honestly not as good or detailed as what I was producing and was about to be done with, but they finished faster, sooner. They finished early, by one week. After that, I had no joy in my work. I felt devalued and wasted, and I had been. The deadline had been at the end of two weeks ahead, the draft due the end of the next week, and yet they didn’t allow me to do it, but I already had spent extreme effort and time, dedicated solely to that. What they didn’t know, because they couldn’t see it on paper and anything they might see would look like scribbles to them, though very ultra organised which they wouldn’t be able to see as they don’t know my shorthand, was that it was nearly done, and done well. They did not like or understand my process, so they devalued and discounted it. After that and a series of such incidents (though that was severe because I had liked and wanted to share what I had been working on and finished planning and organising, in my head so of course they cannot see it) I felt panicked and anxious when something came up that was needed to be done, and frankly had much trouble doing that, anxious all my efforts would be wasted and have to be redone, or worse. It sounds childish but the effort I went through was exhaustive (and this did not only happen once with them but repeatedly) and as I was near done in the last stage the focus I had been putting in and energy got all wasted, repeatedly. If it was something I cared about, as often was, and wanted to do, that was so awful to see it be wasted. Plus I gave up all other activities to focus. It was very planned, very organised, very deliberately done by me. On rare occasion I got something to completion before all effort was discounted and wasted. Plus I was devalued and they felt like they had to force me as they wrongly assumed nothing was being done. So, after such interactions, the feeling is dread, and it does become really hard to get things done. Sometimes as a child or person in a vulnerable or lower position or position likely to recite judgement, it is better to give up and say no in advance if at all possible, So if possible to avoid doing something or avoid agreeing to do something but perhaps doing it when nobody is looking, such as washing the dishes and cleaning up, felt or feels or can feel better. Seriously, it isn’t pleasurable and can eventually become so traumatic that it isn’t possible to do even what we want (whether for ourself because we like it or to be considerate or lawful, following some required rules) because of this pattern of judgement and insistence that we do things in a way that doesn’t produce the results well when we try to do it that way. These days, we may have to struggle against the built up trauma from such experiences, and it may be especially challenging to get anything done, including what we want to do. So I suggested panicked demand performance.
Side note: It’s about taking away the choice AND potentially forcing someone to do what they cannot or may not be able to do. Normally I would avoid choosing things I’d have trouble doing, so basically 8m being forced into a situation where I may appear bad simply because 8m unable. Ironically even if it’s something 8 want to do, this gets me stressed out. It used to be all right but it has gotten progressively worse along with suspicion and manipulation being directed my way. Truly creating* a kind of trauma.
This is really helpful. I think with children it can be more complex when they additionally feel overwhelmed by choices/pressure/questions/have a need to get things RIGHT and a huge fear of not doing things correctly the first time. So it can be really confusing because I give my daughter more control or freedom but in some situations that just overwhelms her more, and she'd rather I make choices for her. As an ASD adult myself I understand some of it but our experiences are unique, especially when you've got other things going on. I find so many of your videos very enlightening and relatable. I wish more people got this stuff.
Omg, you just explained to me the reason why I was so devastated at my previous job! (besides my shitty new boss there.) The lack of choice: when it was about working from home because, you know, a deadly pandemic going on, my last company said: "you can work from home.... IF we allow it for each individual case!" Of course, my choice would have been 5 days home. But nooo, this decision was taken away from me/my colleagues without any valid reason. The feeling of completely being at someone's mercy. Horrible.
I thought everyone would respond that way to the parking situation. 😆 I think my life may have just changed watching this. 🤯 It explains a LOT of daily life in my household. 🤔😮 And being tricked is VERY annoying... whatever it’s about. Glad you got free parking in the end, but I can appreciate how worked up one can get about the principle.
I've found that it has to do with routines in my case. I cannot cope with demands because I'm not in that routine yet. So at work if there is a 10minute task I can't do it and it'll take 2 days to get started, but if there is a block of work which lasts for several days or a week then I can get into that routine and stick with it. If the work dries up then I end up in the "doing nothing routine".
I'm just learning about PDA and ODD and I have realised that the behaviors my adult family who are autistic have are due to these conditions. It answers so many questions about how we all behave and try manage our anxiety. Thank you for all that you do to help people with autisim etc. You speak so clearly and you are easy to understand. I have subscribed.
Completely get the parking thing, I hate being tricked or forced in situations also. I want to be in controle and when that "choise-option" is taken away I get very upset, just like you!
@@ChrisBcards I'm autistic and an autism teacher as well. He is telling you it is useless to try to force it. At times, your child may enter a "hyperfocus" state: playing video games, going on the internet, etc to the point of losing sleep. Only during these states may you be able to effectively redirect his attention to something he will need to learn. I have learned Spanish, music production, writing, reading, etc. only self taught. It's fundamentally irritating to have someone try to show me unless I ask. For example, I have to do IEPs for the students. I don't like doing them. I do them when I enter a hyperfocused state -- which I do not control. I have to wait for it to happen, and when it happens I have to cancel all other plans. I think what I'm trying to communicate is that you will never "control" the autism. Even as a full grown adult, with a regular job, I still am a slave to my disorder. I have to respect the disorder before I respect eating and sleeping.
@@graemesault3967 I'm autistic and an autism teacher as well. At times, your child may enter a "hyperfocus" state: playing video games, going on the internet, etc to the point of losing sleep. Only during these states may you be able to effectively redirect his attention to something he will need to learn. I have learned Spanish, music production, writing, reading, etc. only self taught. It's fundamentally irritating to have someone try to show me unless I ask. For example, I have to do IEPs for the students. I don't like doing them. I do them when I enter a hyperfocused state -- which I do not control. I have to wait for it to happen, and when it happens I have to cancel all other plans. I think what I'm trying to communicate is that you will never "control" the autism. Even as a full grown adult, with a regular job, l am a slave to my disorder. I have to respect the disorder before I respect eating and sleeping.
Your videos are absolutely fantastic! I'm a therapist and work with people on the spectrum (and NTs) and also have many family members, including my partner who are on the spectrum. Additionally, I have ADHD and have been learning Demand Avoidance is a thing for some people with ADHD too -- and that definitely includes me. I've read about AD before and have watched other videos about it before but I never really "got it" before watching this! Oh, and I love your story about the 11-year-old girl. Thank you so much for sharing in it; I totally agree about the unfairness of potentially setting up preconceived judgments.
Holy cow! You are talking about me! Regarding the parking incident: Yep, it's the principal. It's as if the world is filled with gotcha events. Ugh! I prefer to treat everyone with kindness, respect and charity.
Explained so well with car park story :). You said you need to have control because of your specific needs related to sensory issues for example but I got to 50 without really knowing what my needs are so that’s been fun ! Think I have adhd and pda/autism
Thank you so much. I identify on so many levels with your experiences in those videos. Lately I didn't come to an ecologic event for which I had a reservation, only because I was forced to give "permission" being recorded for a TV program in order to have my free ticket. I was so frustrated being forced that I let down the occasion. Too bad, but I hate being seen and didn't want my private life being exposed on TV, being recognized by patients or close ones.
I don't quite struggle with this, because I have found a way to get around it most of the time. The immediate pushback feeling happens for me, but then I try to see it from a big picture perspective, or from somebody else's point of view, and that helps make it feel less personal. And if it's not personal, it doesn't bother me as much. To take your example, maybe instead of thinking "I don't want to be recorded, why do they want to video me, I don't want people to see me" I would change perspectives and think "it must be a big deal to organize this event. They're probably wanting to take pictures of the crowd for promotional purposes or for getting funding in future, to prove that this is something that people are interested in." And then I think "how much bother would it be if I were in charge of this and I wanted to video it for whatever reason, and there were a few people who didn't want to be recorded? That would not even work. I see why they have everyone sign the consent, because you never know where people will walk and maybe the ones who don't want to be recorded might walk by the in the background or something. I couldn't guarantee anything." And so on. And then I can make a choice that is reasonable and not a reaction that's our of my control.
So... not only did I discover that I was autistic through your channel... Now I feel as though you have described how my brain works with PDA. At around 4:21, you put words to my feelings. Thank you for developing your channel and explaining how you "operate." It is extremely helpful to know that I'm not broken, just different. Before I realized it was autism, I firmly believed I was completely flawed. Accepted abuse from everyone. When I learned I was autistic (thanks to you) I began healing. I have removed a lot of toxicity from my life just because of one 20ish minute video. You are changing people's worlds with your channel. Thank you!! From the bottom of my heart, thank you!!
This happen to me occasionally in certain situations where a specific verbal response is excpected by me as out of social concvention. I go: "Oh, now they're excpecting me to utter this phrase again" and I freeze in anxiety and goes into a temporary shutdown. The same goes for folllowing some of the rules in a group setting. If the leader has told us not to do something, then I really feel the urge to do it and sometimes I do too! :D Ironically NT:s also don't like feeling forced by us autists to do certain things - just in different situations. It becomes worse, because for me the only time I really enjoy my social life is when I can grab someone's arm and say "Come with me!". Already as a child when I sat in the front seat of Cessna, I turned around and told the children in the backseat: "Let's fly, shall we!"
Years ago, a clinician tried to diagnose me with ODD, and I k ee it was so wrong. Being diagnosed with autism and adhd, I am now JUST hearing about PDA and it makes me so upset that it explains so much of my life, and yet it has been kept from me for so long. Thank you for the breakdown and for the validation. It feels like another piece has slipped into place, and so much weight has been lifted off of my shoulders. I finally feel what I consider normal.
Given all the negative crap low support needs divergent people get, you'd have to be quite unwell to choose to identify as ASD. We do it because, as mentioned in the video, we go through a very long process, often lasting years before we hit upon the fact we might just be divergent. We then spend a long time thoroughly researching. The last thing we want is to be singled out even more. We risk the extra burden of guilt and shame on top of that which we've suffered all our lives, because wecan find some solace within ourselves and in the company of others. The more we come out, the more adverse reaction we get, but the more we understand ourselves. It's not a decision taken lightly.
Totally. When I was a kid my mom sent me to camps where there were set activities and I was forced to partake along with everyone else, that caused "behavioral issues" and frequent calls home over me being "defiant" or "disruptive". Say everyone was going down to the river and I wanted to go swing on a swing at the playground and they wouldn't let me. My dad sent me to a camp where we had to choose our own activities for the week, you coukd choose kayaking, biking, horseback riding, tennis, painting, etc. My dad was warned by my mom to expect me to be troubke and to get calls. Guess what? No issues at all, I happily did all my chosen activities and I could choose to keep them or change them next week. Loved it. Can you imagine a boss telling an employee that they absolutely have to go to a bar with their coworkers on friday or else there'll be serious consequences? No option to say "I don't feel well, will pass this time".
Great tips; thanks. Absolutely get the need to always provide a choice. The difficulty comes when my daughter (who has a PDA) has made a choice but then can't follow through. We've made arrangements as per her decision but when the time comes to do something (e.g. go to an appointment) she's faced with the consequence of her decision. That feels like there's no choice - e.g. she's being reminded that people are waiting to take her to her to her appointment. Any tips on how to follow through the consequences of making a choice?
Paul! This is so amazingly helpful for parents (and I'm sure autistic adults as well). Your examples really made the concept tangible. I found myself thinking, "Well, of course!"
Personally, I feel the need for others to be in perfect conformity to your thoughts is the problem, not the need to have choices and some degree of control over your own life. ODD and PDA are the more normal reaction. The "pathological demand" is what needs to be avoided, not that avoiding the demand is pathological.
I'm really upset because this profile matches me perfectly. But it's extremely personal to each individual. I was diagnosed late with ADHD. I see the trauma and anxiety in PDA that detrimentally affected me as a child. In fact, it led to compounding trauma because medical investigations were so hard on me. I am now so worried there's no solution here. If parts of my job, the thing I love, are triggering PDA, then I'm in real trouble. It's academic for people out there humming and hawing over whether it's real or not, whether it's autism or ADHD. I'm just rolled in a ball frozen with anxiety because I can't do a thing that's vital. Your video was one of the few places I felt someone was making a good faith effort to guide us.
Similar thing happened when I had to park in Chicago once. I entered a parking structure, decided I couldn't afford to pay, so I left immediately, without obtaining a slip allowing me to park. Then I began wondering "How am I gonna prove that I didn't park?" Then I started worrying that they were going to detain me on my way out
I understand these principles and have used them to smooth the relationship with my 25 yo autistic son. But how do i prepare him to live in a world where most others are not that informed or supportive?
I’ve seen a dozen or so of your other videos and liked them but this is perfect on a whole new level. Amazing to see someone be able to put it into words like that.
Cognitive behavioural therapy can help correct the idea that nothing should go wrong. If you accept that things WILL go wrong and have coping strategies it deals with every situation. The Chimp Paradox is a good intro to CBT.
THIS. If it's mandatory I won't do it. If it's non critical, I won't do it either. And if I find out that my decision was influenced by people intentionally feeding me corrupt data in order to advance their agendas I'll explode.
Thank you so much for sharing your parking example! I'm currently working with a student I believe to have PDA. Trying to find strategies to help me help her!
Heh I remember having a total meltdown at camp in 7th grade when the camp counselors changed a game which I had planned to join in from an optional to a required activity
This video helped me so much. I didn’t want to take my friend to the pool at 4pm. Even though I really wanted to swim and to see her. It’s later today and the avoidance was getting so bad that I wasn’t eating or showering or doing anything or taking any of my medication‘s or vitamins because I was avoiding going to the pool so much that the defiance was spilling over until literally every single activity I had to do. I was getting so frustrated that avoiding doing something I wanted to do was effecting me so badly I was avoiding every just felt insane. After this I calmed myself down and realized that since I’d said to myself for the last week that I needed to remember that I was going to the pool at 4pm today my brain was so anxious about forgetting that it just made me anxious and upset about the whole thing. I still wanted to go swimming, I still wanted to see my friend, but 4pm was now a dreaded time of fear. So I told myself “it’s fine we don’t have to go at 4, is 4:10 ok?” And even though it was only 10 minutes my brain immediately relaxed and now I can do my daily routine and have no anxiety around it. I messaged my friend and she said 4:10 actually works better for her so literally eveything is fixed and fine because I gave myself the ok to adjust the time. I’m so excited about this! I’m really hoping this strategy can help me with other things I want to do but avoid
It's all true: I do tend to avoid pathological demands. Some may call this "PDA." I call it "TFM": _thinking for myself._ I've had 59 years of practice, and I believe I'm not bad at it. 😸
wow... great video! Thank you for uploading this! I've always felt so high maintenance but I relate to everything youre saying and it makes sense. I avoid going out with otheres because theyre usually like hey lets go here and do this and I will want to do that thing and have fun but its like the way they presented it turns me off... I HAVE to know what im walking into... idk how others just do things...I cant help but feel like im the problem sometimes so I just avoid others all together (":
I related to this very much. I'm not diagnosed with autism, but I know I'm on the spectrum (my adult son is dx'd on the spectrum). I also am an abuse survivor, so I have a very strong need to be in control....and this video helps me better understand why. Thank you for sharing this information and tips.
Completely agree with the parking situation. It’s like the thought or possibility that someone has any authority or forced decision making over me is like literal kryptonite. I would have refused to pay. And fought about it.
Suppose the workers who were hired to make and maintain the parking lot felt the same way? Now no one had a parking lot and, thus, no one had a choice except to walk. Now you are forced to walk. Suppose you are the owner of this parking lot business. You want to keep your 6 employees who are loyal and have familiar but you are forced to fire one of them because you are not bringing in enough revenue to support 6 workers anymore. My point is that choices are easy to make when you provide yourself with the majority of your basic needs. (Aka off grid, so to speak) If you can’t or won’t do that, you have to be willing to compromise, even when it makes you feel claustrophobic. Otherwise you are just passing on your discomfort to someone else in a variety of small ways.
having multiple choices bit speaks to me as well as the little girl's story. So many times as a child I was told "were doing this now, or come over here for a 'moment'. was always irritating because my attention was pulled away from what ever I was into.
Wow, that was a great explanation towards the end of your video! You described pretty much how I feel about what I need. I keep asking questions until I understand what I need to do for myself in situations. For example; I might ask if there will be stairs that I can use or will the only way up be an elevator? I’m claustrophobic in elevators.
I love the example you gave of your own experience! I felt frustrated listening to you tell it. It shows you really understand what having PDA can be like!
I love your example of your own experience. Imagine if everyone in the world adamantly resisted being controlled-- the slave system we are in would no longer exist.
This is something that became increasingly apparent to me over the years long before I realized I was autistic. I can manage it to a fair degree but it's obvious to me that I have to manage myself in relation to this. When I was younger I typically responded like a good little soldier happy to follow orders because it instilled confidence that I was acting rightly. I was a bit of a self righteous little so and so at times unfortunately. "Relying on me" is one of the more serious serious stressors for me but it's also more motivating so when I can maintain a balance it's fine but if anyone leans on me the wrong way it's definitely trouble.
I am just now learning about PDA. I feel like I don't completely understand it yet. Initially I would say I have no problem being told what to do, so it might not sound like me. I tend to be a people pleaser, I say yes to everything. I often feel like I have no clue what I am doing so when someone tells me what to do it feels more like direction and guidance which I greatly welcome. I would say I always did what I was told growing up and I always tried to do what I felt was expected of me. I feel like I was very compliant. I did not like making decisions. So being told what to do can bail me out from having to make a decision. But I was also passive aggressive. I could be very stubborn at times. I feel like there is definitive truth or efficient ways of doing things. So if someone tells me how to do something but I feel like my way is better, more efficient, more correct, that I just know more than they do, or that their way is just not very good then I really don't want to do what they say and I am probably going to do it my way and not listen to them. And with the personal experience you shared I could see myself reacting/ feeling the same way you did. I am just going to have to do more research on PDA. I always try to get lots of information from many sources when learning about new things like this before I start to understand it.
Thank you so much for such useful information:) If there are any tricks to deal with internal demands? I find them the hardest. When I want to do something but I can’t. Is there a way to trick yourself into doing things? As I already know what exactly I want to do it, how it’s going to be done, when it’s going to be done. And even that I usually enjoy it. And I’m just stuck. Can’t do anything. Feels like a huge heavy rock that I need to carry. There are so many videos about communication with other with PDA, maybe there’s some tips on communication with ourselves?
It would be nice to get some advice on this.. I have it happen all the time things I want to do becomes a demand and I don't get around to doing it.. Thats not as bad as when I want to do things for family and tell them so and I end up not getting to it I feel very bad for not doing the said thing. Its one thing to not do somthing you wanted its another to not do somthing you really wanted to do for a loved one..
Thanks for this. l think l have a PDA disability and l've been doing youtube for nearly 4 years but still 3 years like l derely make something just for natural experiences and my doings of activities that l enjoy doing like doing vlogs and playing xbox games and l live going swimming and gym which meanly l also have like a sort of thing from physical health issues and diet problems and l love to talk about my life about me and my learning mental disabilty and l also suffer from social anxiety and sometimes panic attacks that l struggle to control my belongings and my reality of my thinking thoughts from the positivism rather then thinking about the negatives and sadness feelings about not gonna see my friends or talk to them again bcz of the covid 19 and it got me very threatening life conditions with my family and friends and toughely a challenging thought of social isolation. l always get mental difficulties with environmental near people and playing games with others and l struggle to not play too rough which l struggle with like roughly playing football with friends which can cause bullying and accidently hurting them and myself and start to lose confidence and talking to people online about subjects and information and l easily get nervous about something such as worrism and high feelings of society panic anxiety and sometimes when they demand me to do something like inviting me to join in games or when someone tells me to do something that l need to do something for them very important l just avoid it and l cant do it bcz l know l wont be able to manage like struggling to respond back at they messages and think what I'm gonna say back at them or fix everything also struggling to fix my xbox when it gets disconnected from xbox live & l become angry and upset bcz I can see someone in my mind and that person in my mind is bald and he has a troll face with a white head circle shape and that makes me very paranoid and angrier and mental but l do indeedly have pride in my soul and my integrity intelligence for helping my people that is going through with difficulties and mental illnesses so yeah I'm indeedly a nice person becides being my self and enjoying my time with friends on xbox but sometimes when they mean to me l become violent and after that l lost my mind and clearly it's not a bad thing l mean its pathetic to mention about bullies on xbox or the environment that l believe is sometimes scary or confusing or depressing when people stare at me sometimes l get a lack of confidence when I'm meeting new people for the first time to ever talk to and try think what can l say to them and l say your alright and they say alright and then afterwards l get a electrical feeling in my stomach and It makes me feel anxious and intense anxiety with my mental health and my wellbeing as like my following incredible life skills l do in college like communication skills or going to get a job which I'm struggling to apply for the company until when I'm 22 and try learn about my self and believe in myself that I am the real me and l learn to get good counting money and try give them my money after l did my shopping l felt anxious and they might think is that guy ok and l might talk to myself saying I'm not sure but was l just anxious or did l embarrasse that shop keeper and l was trying to get my shopping bag and l was taking for ever and then l had to pay with my bank card and l was struggling to behave like a normal humanbeing and l was uncontrollably laughing about they way l was doing or acting ou in front of the customers and that made me feel wierd and l become awkward when l cant control my emotions bcz it started since when l was 17 and it was a year ago andxl think I had it since 2011 and l think its getting better with my autism spectrum when I'm on the autistic spectrum disorder and that all what happended and l think l get that when l publicly act like a child but as an adult it feels like I'm in a movie and playing a character of paying for something or pretending to be someone that l never let them know who I truly am and l just hide myself so they might not know who l am that is trying to be a different person and l was scared to tell them I'm the same person that is hidden something like in xbox and l told them I'm not him and it feels like I'm lost and it changed my thinking and my relationships with others that l care for. l mean everyone is just different from the different sources of their own lives and nobody will not let you down it's just panic attacks and sometimes l feel out of touch and feel disconnected from others and from reality and l think that was PDA disabilty feel like if I'm right! Everybody has different opinions.
How are you doing now? Do you feel like you are still struggling? I hope you managed to keep contact with your friends and fix your xbox. I suffered a lot of anxiety in social situations until I realised the world has become so self obsessed most people are too absorbed within themselves to notice anyone else. When all the thoughts run at 101 miles a minute, be like an invisible breeze and observe the others like animals or specimens. That helps me, hope it helps you :)
Holy shit! I never even realized why paying for parking pisses me off so much until this moment! It's because the 'P' sign is generally a lie for lack of $ disclosure. If they'd just make the signs say $P or put the word hourly on it, I think my brain would process it differently.
This reminds me of: The show Frasier has an episode where he gets into the parking ramp but changes his mind about parking, so he wants to drive out again. But they won't let him out unless he pays for having been in there. He then refuses to move and of course it all escalates.
I love how you described it as a “claustrophobia of being forced to [rigidly] conform.” That’s EXACTLY how I experience it, and it’s super validating to know I’m not alone.
This is why I hate filling out multiple choice questionaires. None of the choices fits what my true answer would be, yet I'm forced to still check one of the choices. This forces me to lie about myself. It makes me feel like only "normal" people are valid, and it really grinds my gears.
This is so true, I never thought it affected me much until I thought about it after reading this. It is so hard to go through each question and each one would not have an option that fits us.
Wow, never thought of that, but it so obvious now when you say it.
I love your response. Nothing makes me cringe more than dishonestly or being disingenuous
Same, I HATE multiple choice. I gotta choose the "most right" answer. Excuse me ?!
That’s it; it forces me to lie about myself or give an answer which is deceptive.
"... I have a lifetime of experience of other people not understanding my needs, so if someone else chooses for me they're likely to choose something that's not really good for me." 😯🤯 Amazing! This is a game-changer in my understanding of my own PDA.
My daughter.
She have a PDA too.😢
What is the best thing to do of her PDA,? 😭😭 We dont have much money to go to pediatric cardiologist 😭😭😭😭
She is 10years old... please help
Yes, so refreshing to hear this perspective. People don't WANT to understand the needs of others, especially children. They just want blind obedience. And if you don't give them it, they will belittle and scream at you, or at best, diagnose you with a mental disorder.
A cardiologist is a heart doctor so unless you’re talking about a different condition, they won’t be of much help in the parenting willful precocious children department! 😂 That said, as an Autistic adult who is dealing with this myself and has also seen this phenomenon come up in business management courses of all places, give all relevant background information regarding what you’d like done and why and be willing to answer questions,, always present a list of several clearly defined choices so as not to fluster her, and don’t try to change a bad behaviour with rewards or punishments if you suspect demand avoidance could be involved in it since that will actually make the problem worse. :)
@Jeniejill heramis What's the connection?
It actually made me so sad that the little girl was so used to force that she was confused to be treated like most adults expect to be treated, like an autonomous person.
Same. I feel like I'm her.
This hit me so hard in the chest ... it's not about being difficult or contrary, it's about someone taking away my choice. It's about being forced into a situation where I might be made to feel uncomfortable and distressed, and not able to choose what happens to me. When someone takes away my agency, I have to go with whatever they choose for me, and nine times out of ten it will be uncomfortable for me because I won't be able to proceed in the way that I know works for me. Added to this is the fact that I have a strong sense of justice and fairness, and other people making me do something is simply not fair. It's not about the one dollar, or whatever it is about on the surface. It never is. It's about respecting me when I say 'no', and not choosing for me. Because when you take away my choice once, I don't know how far you're going to take it, and I'm so scared that this will be a slippery slope towards me being completely controlled by another person with no way out. If that were to happen to me, I would struggle so much to disentangle myself from that situation because I struggle to recognise my emotions when I need to and I struggle to stand up for myself and I am absolutely terrified of confrontation. I can't just say "it doesn't matter this time, I'll just let it slide", because I don't know what this is going to lead to. And this is by no means an irrational trait, it is a very valid reaction to my lived experiences.
@NEW HOPE INSURANCE LTD There is no such thing as a "cure" for autism and suggesting so is disgustingly ableist, on top of peddling your trash. You should be ashamed of yourself
I relate to everything you have said, because of my personal experiences.
Same!!
Most of the time, the "demands" are for your own good. So to characterise it as "taking away your agency" is an inaccurate understanding that you may wish to work through. As a parent with a child with ODD you don't understand how difficult family life can be when you have a young person with ASC and ODD.
@@msb120 that's incredibly fucking ableist. Maybe you should stop centering your experiences as an "autism parent" over the experiences of actual autistic people
My 11 year old PDA often tells me that she wishes she could say yes but just can't. This happens even when asked to do fun stuff. There is just to much anxiety around expectations or new things etc. I always prepare her very well before an activity. We talk it through and prepare for it. This allows us to go to the odd movie or to someone's house and so on. This is very different from ODD but easily misunderstood.
I relate to that alot I feel very controlled there have been times when I've gone to do something and then afterwards someone has told me to do it or to hurry up doing it and I've not done it but originally I wanted to do it one main time in my life I'll explain for an example purpose I love art I aways have I was going to my next lesson art and I was very excited because we was doing a particular subject but a teacher told me to hurry up to class when I was but that comment made me bunk the class and go hide in a hallway cupboard until next lesson.
I have a bit of that issue. Actually I have trouble saying yes or no. I’m often pushed into selective mutism when I’m asked to do something or asked what I want, and I can’t speak at all until the right thing is said that my brain will latch onto allow me to respond to. As far as being asked about going and doing things, even if I want to, it suddenly seems like something that’s very stressful to do.
Sounds familiar, but I have that less severe. I used to always excitedly tell people what I was working on, thinking of, and what my plans were, but I've realized in the last couple of years that I should never tell anyone my plans in any way, because once I tell I feel that there is a demand that I follow through and I lose the will to follow through even if I was so excited about it. So then I ruined my own excitement. The worst thing is of course if somebody actually asks about the plan, but they don't even need to say something.
She's fortunate to still have a mother and some absolutely clueless or malicious school officials not called the social to take her off you.
Every time it's difficult. Think about that scenario because it's a reality.
The problem was parents research things and professionals have "qualifications "
I am so sorry for your struggling.
Demand avoidance autism was changed to ODD by a lot of ropey psychologusts.
In my opinion. 😂
We've understood years.
Your 11 (now 15 I think) year old Pathological Demand Avoidance? I'm sorry but that's no way to describe your child. She's much more than just her diagnosis 😕
My son was diagnosed with Oppositional Defiant Disorder and I knew that was a useless BS diagnosis. Persistent Need for Autonomy makes so much more sense!
Agreed!
@Dr Yuching Lee please do share
@PMbeers I agree. I find I don’t have a big problem with PDA as a term - that’s just me, others are free to disagree - but “ODD” just pushes all my PDA buttons. It’s a loaded term that’s all about how much trouble my own difficulties are making for the person in charge, who apparently can’t be happy if other people don’t do what they tell them to, but thinks I’m the one with the problem! There are other issues with demands that trip me up too, but that sense of unfair judgement is the one that makes me go from zero to apoplectic in no time flat. (I’m in my early 60s and have always been this way)
@@jimwilliams3816 that's a perspective that most people won't ever see. When we ask caregivers what is their goal many often get defensive. The goal of a caregiver should be to protect and teach, not to control
@@PMbeers Interesting. My mother was very willing to explain the whys to me, and I appreciated it even as a child, and it just seemed like the natural thing that everybody should do with their kids. As I've fairly recently become aware of PDA, I've realized that I've always had many of those traits, and my mother had them even more strongly -- she had an intense need for autonomy and was doctor-phobic. I have been thinking that explaining things to me, and letting me make my own decisions, was an accommodation for my traits -- she certainly wouldn't have had any luck saying "do it because I told you to." No one ever did.
I love to explain my reasons for things to people, to a fault -- and the idea of becoming defensive about it seems wholly foreign to me. I have long thought I was autistic, and suddenly I am remembering that liking to explain things to people is not uncommon on the spectrum. I also really, really need to understand the logic behind anything to be able to work with it at all, so asking why is not really an authority-challenging behavior -- that's an outcome more than a cause, hence my anger at the term ODD. Like Paul said, it's less about opposing than not being given the tools I need to do the job. Then I do get angry at the person who insists I don't need something I know I do.
I used to think my autism came from my father, but I now think he was mostly ADHD. My most autistic traits are ones I share with my mother, but our negative traits are associated with lots of disorders, and I've struggled to imagine she might have been autistic too. I also have focused on the negative ways we were alike. I am suddenly seeing how autism might have been our shared experience, and in some positive ways. We most enjoyed each others' company when we were explaining things to each other.
Thank you for spurring this thought process.
I am not diagnosed with autism yet, but what you described here with the ODD is spot on for me. I freeze up completely whenever I feel forced, and I had the worst time as a child with this when people forced me into doing things and I went nuts, and everyone just said I had bad behaviour and was being a difficult child.
Omg me too!!
I'm watching this as a teacher and trying to apply it to a child doing things dangerous to himself and others like eating playdough or tackle-hugging children (and not recognizing or ignoring negative reactions of the kids he's did it to). Like how do you treat someone w odd that's OBVIOUSLY doing something wrong? I just wanna teach him the right thing but when I separated him from them he melted down and I was like, is he gonna take ANYTHING away from me doing this? A lil at wits end.
The freezing up paired with selective mutism when pushed can be an absolute nightmare. I never really had outburst, but just think bull in a china shop inside me, making me feel like I was gonna explode when somebody wanted me to do something and I couldn’t, but I also couldn’t speak to them to express why, not that I knew why at the time. It does still happen to this day sometimes. It’s so frustrating.
I had an abusive school teacher and I was always scared to ask any questions because she was authoritative and places the difficult kids on the outskirts to isolate them and embarrass them in front of the whole class
Keep using positive phrases - be kind, be gentle, be patient. These offer choice becasue the person can select how to be kind and gentle etc. but saying the negative like ‘stop….’ is a closed instruction
This is SO me!!! Recently diagnosed autistic at 59 yo. I am extremely demand avoidant. It drives my husband nuts!
Aspie raising Aspie here. One of the things that I struggle with personally is that some of my daughter's sensory/comfort needs are diametrically opposed to mine. As an adult, understanding her needs I try to approach things sensitively and compromise where I can, but as an Aspie I sometimes get to overload point without warning which compromises my ability to deal effectively with her. Two key points on which we clash are as follows:
She is very sweet and one of her main comforts is always having something in her hands, which is not a problem, the issue arises when she wants me to have the same comfort. She will hand me a toy to hold and expect me to keep hold of it. I can't stand having something in my hand all the time. I have explained to her that I'm touched that she is looking out for my comfort and security, but mummy feels different about holding things. I tell her that I need two hands to do certain things, so I can't hold the toy and complete the task (something she is grudgingly coming to accept but I am handed the toy back as soon as my task is done). There is no particular value in the object I am handed, only in the fact that I have one. I have tried showing her that I am putting the toy in a safe place, I have tried having it right beside me, I have tried quietly "losing" the toy, placing it in a pocket or pouch. I've tried securing it to my wrist with a hair tie. As soon as she notices that it's not in my hand it is replaced or substituted. It really distresses her, despite my constant assurance that I'm OK without the toy, that I don't like having something in my hand all the time, that it actually really bothers me to have it in my hand the same way it bothers her to wear clothes inside the house. She seems to have a blind spot and while she does accept this approach for a lot of things it doesn't work here. I can't handle the constant sensory input, I can't handle the controlling aspect of her not giving me a choice (which I have also explained to her) and occasionally I snap and get to meltdown point, the toy gets thrown, I yell, because at that point I can't control my volume and take myself outside to give myself time to "reset". When I have I come in and explain what's happened and why I got to that point. This works for about half a day. I have also explained that I really don't like that I am pushed to the point of meltdown (she hates her own meltdowns) before she will listen to me. I have also point blank refused to take the toy (this stresses her badly and sets her up for multiple meltdowns as she is so anxious about my not having the toy that she can't deal with things she can normally cope with). We are making small progress, but it's painfully slow. She's nearly 4 and she's been handing me toys since she was a baby.
This comment is already too long so I will skip the second issue for now. Thank you for reading if you got this far.
I got this far. Thanks for sharing. That's a difficult situation, especially because she is so young. Sticking to your own personal boundaries is important - as you noted. This is something that she will need to learn as she gets older as it is not a feasible solution to expect others to hold a toy for her all the time. Sometimes things are out of our control (and/or are not feasibly to ask for). I watched my little nephew try to put on his old gumboots the other day. They were too small (he'd grown!) and the didn't fit. He tried and tried, and cried and cried when it just didn't work. Nothing would help. But that's just the reality. He couldn't get what he wanted, and the only choice is to learn to deal with that reality (somehow).
@@autismexplained it's especially difficult to find a balance in this situation because it is an expression of love for her. She finds great comfort and strength from having a small toy constantly in her hand and wants the same for me, she just can't conceptualise a different view on this because it's so important to her. It's the same sweet motivation that makes her strip all of her toys of clothes, because she is more comfortable without them herself. It's that Aspie compassion so many people think we're without. I understand it. I can't walk past a man in a suit and tie without feeling like I'm choking, or a woman in high heels without my feet aching. They may be perfectly comfortable with it themselves but just seeing someone else wearing clothes that I can't tolerate for any length of time makes me cringe. It is as you say just something we have to get used to.
But kids just need stuff to your all the time, be careful of reading into things too much.
@@cerridwenrowan I read your comments and really felt for you and your daughter. You may well have already tried this, but is there a substitute gesture or thing you could teach your daughter to do instead? She might feel better if she can still express the sweetness through a caring gesture, but tailor it to something that works better for you. I really empathise with you not wanting to “trample” on her gesture of love 💚
Also when she’s a bit older, she may find the concept of “love languages” useful. My autistic partner and I found it very helpful in clarifying how to convey love and affection in a way that the person truly wants to receive it. There’s loads on stuff online if you want to look it up.
Wishing you and your lovely daughter all the best 💚
@@brindmusicnerd thank you how thoughtful. We have both grown and learnt so much about ourselves and each other in the 2 years since I commented I am pleased to say this has been worked through and resolved x.
This is so helpful to me. I'm a hypercompliant autistic (think "Ella Enchanted") but my oldest has a lot of demand avoidance--knowing how to deal with it, and being able to remind my inlaws that it's an anxiety response not disrespect or defiance is very helpful.
Daniel Goleman says basically we should all become fake people pleasers, and therefore that will improve our lot. "Emotional Quotient . " I'm ADHD, PDA, which evolves into ODD, then sometimes....uh yeah. Never heard of "Ella Enchanted", oh but such a pretty name
@@LSD-33166 Ella Enchanted is a retelling of the Cinderella story in which the titular character is cursed with obedience by a well meaning but not terribly bright fairy. It was made into a movie some years ago, but I think the book explores the consequences of such a curse more effectively.
I have thought I had ODD since I was a child. Only recently have I found the subgroup of EDA/PDA. I don’t want to defy - I just get extremely anxious when someone tells me to DO anything.
Growing up with abusive parents who would enforce strict rules that they would not follow themselves blew my mind as a growing child causing me to never want someone to think they know what I should do next. This affects me socially too and when I’m aware of it I HATE it, someone can be talking to me and giving me a non verbal queue and I will PURPOSELY avoid being effected by their queue??? Like I know they want me to see/do X and it would be normal to follow but I refuse… made it really hard to make friends back at an age that it really mattered. It’s wonderful that neurodivergent’s are sharing their experiences and helping us all discover more about ourselves.
I have a friend that does the whole non verbal que thing all the time and it drives me bananas. I do the same thing and ignore him 90% of the time.
I also used to deliberately ignore nonverbal cues from other people! It was definitely out of a need for control. Never heard anyone mention that before. Thanks. Same with verbally implied "requests", like if someone was fishing for a compliment or sympathy. I would also get somewhat annoyed when I would do something on my own and then someone else would say "thanks" as though I did it specifically to please them. This was more in elementary through middle school, I've developed a more secure sense of self since then so I don't do this as much. But my gosh it was very hard to make friends.
It's hard to explain these tendencies to people without sounding extremely antisocial. It's not disliking others, it's reacting to anxiety from feeling external demands or compulsions. The paradox is that I'm also a huge people-pleaser and often have trouble making decisions for myself in the first place.
Yes yes yes 🙌🏼 so many things feel like people are manipulating to get the answer they want.
Thank you so much. My husband was diagnosed with high functioning autism last year. Control is VERY important.
I also work with small children in dance classes. Force NEVER works. Inviting and giving options brings the most resistant kids in. And they are only resistant because they are constantly denied choices day in and out.
I only just realised today that I have PDA and what you just explained makes total sense to me. Unfortunately the world is not going to change to accommodate my needs but having an understanding of what is causing my stress is helpful in itself.
Yoga mind control techniques can help you because you can have the mindset that "I will deal with issues as they arise because I am clever enough to figure out coping strategies". Things do go wrong sometimes but that is life. Deep breaths and try to survive it for the good days!
Yep, that parking situation is already pissing me off sitting here in my chair, much less in the moment, lol. Sounds just like every time I've exploded about "the principle!" and my wife is going "Just pay $1!".
Damn Paul, this is my favorite video of yours. I knew I related to you, but your description of the claustrophobia and tyranny of decided decision points is... A+! I'll save that one to explain my own issues, thank you!
I'm working a 75hr work week right now for the first time in my life, and it feels like being in actual prison even though its at home. I have been trying to figure out why I'm struggling so much when the work isn't even that hard, aside from my ADHD making it hard to stay on task.
It's this. The feeling of being trapped. Unable to move or do ANYTHING creativly. It's a VERY dry work flow, move things from one tool into another. And EVERYTHING has a 'right' answer. There is no room for interpretation. It's making me feel like I'm choking out and gasping for air every time I try to work on it.
I didn't understand, I've never felt this way at work before... but you 110% nailed it w/ this video. My (new) boss in my (new!) dept has already decided what we're going to do. And now I ONLY need to do it. No other decision points or unexpected events to look forward to handling. No mystery, no unknown. Only progress. No way for me to inject any of "ME" into anything. Any ol' mook could be doing this rote work.
It's hell. But luckily it's a one-off project so it'll never be like this again. I might have quit already if I joined the department and it was ALL this! AND it's juuuuuust complicated enough that I can't just zone out and do the work too. I keep trying, and I keep making zero progress. It's a new and horrible 'perfect storm' zone for hitting every single deficit and mental issue I have, lol. It's been a fascinating learning experience, at least!
I'm a nearly 40 year old man who, after months of extended discussion with my therapist, was recently directed to information about PDA. When you were describing triggering situations and visually, bodily coping with the emotions that merely recounting those stories were bringing up, my god I felt that. I sympathized with that so hard. I understand completely because I'm exactly the same way. I'm dealing with the frustration resulting from the fact that PDA has existed as a diagnosis for decades while I've only learned about it in the past few weeks. Lack of critical information, and all that.
Thanks Paul. "Give as much information as I've asked for".
This always bugged me. Especially when people repeat the last thing they said instead of starting again where I've asked.
Also saying - don't tell her/him - they need to learn on their own - is withholding information that we need. I believe we learn most often from *being told* the rules/ expectations/ boundaries.
That part hit me hard too because I have that problem at work. I put a lot of effort into asking for exactly the information I need. But the other person often glossed over it and only answers the first or last question. I don’t like having to pester people but I really need all the answers to everything I asked before I can do my job. And because I greatly prefer email to verbal I ask it all in email and then they want to call a meeting to address it because they can’t think without talking. But I can’t think while talking. It’s a mess sometimes.
@@carldmorris2 Just wanted to say: DUDE ME TOO HOLY CRAP. Exactly this, in all ways.
The "here's my 6 bullet point questions, please address so I can start" situation is exactly me, and THEN they don't read it and just say "Can we set up a call instead?" and I just sit at my WFH Office desk internally screaming.
NO! I won't remember all my questions, I'll be overly agreeable and unable to get my own needs met, and I also won't remember 95% of what we talk about, YES EVEN WITH NOTES! I can't run my SocialMask.Exe along with my WorkPrep program!
Or my real worst enemy, the "Technically this answers the question, but with minimal information" people. They address the exact, single scenario I'm in that I use as an example, but then they don't tell me WHY that decision is the right one. So the next time I run into it, I have SOME kind of info, and it SEEMS like it SHOULD be enough since it's what my boss or w/e provided, but yet I find myself with a TON of grey area and questions still. Then I have the complex about asking for more details and being needy. JFC it's soooo difficult to get people just BE! CLEAR!
@Dr Yuching Lee I feel sorry for your son. Someone should call child protective services on you. He needs caring and patience and to be heard and believed.
@K.A. Fortunately we do not need to worry about Dr. Lee’s child, since I’m pretty sure she is a bot and so has no children, LOL! These things are crawling all over the neurodivergent boards now (mushrooms are a common pitch) and it’s pretty scuzzy behavior regardless.
@@carldmorris2 Totally Carl. Should really get glasses, so I can read other people's emails. My own I can, but other peoples - aah!
I think the data-gathering phase is extremely important but also anxiety-inducing for everyone. Sometimes I'm not even sure what data I'm looking for. My mind is looking into all contingencies and try to understand the whole process.
Feel you man, I’ve recently come to terms with my PDA - and recognise my need to control and resentment from lack of choice over my life
That example with the paid parking reminds me of so many times I've encountered hidden charges and been really upset by it. The price also matters to me because yay lifetime poverty, but the point is that at a certain period of time before the money was spent, I had made a decision about how much I had been willing to spend. It's like your car parking. I don't drive, but I usually walk or commute via public transport. Before I even leave the house, I have an expectation that I'm going to spend at most $5 on transit costs. I would be stressed if I found out I had to get a taxi home or I hung out with a friend and suddenly they wanted to share a $50 taxi. I would wait until the first bus in the morning (usually 6 am) to avoid paying for a taxi. Why? It's not a cost that I planned, and there's this small thought in the back of my head that goes: "What if this starts happening every day? Are you going to make it your habit to start getting taxis everyday? There's no way you could afford that."
You are not alone in your feelings about hidden charges... Going out to lunch with a friend was ok as the restaurant was within budget - until the friend ordered wine with the meal. Luckily, she was sensitive enough to pick up on my discomfort, and we each paid for what we had... and we could save the friendship. I'd guess that your taxi home would have been ok if they'd offered to drop you off without charge... it's the sudden change that results in the easiest answer, "no"...
@@MNkno I know. I can't stand it when you go out with friends for a meal you can't afford, you pick the cheapest thing you can find, then they split the bill between you and you're paying for everyone else's. That is so unfair!
5:15 offer important information + teach them to ask for any more information they think they need. Teach them to be aware of their own needs and thr reasons ❤
This is why I hated school, because you HAVE to go and there's no choice or autonomy about this thing that takes up most of your time and energy. I ended up skipping as much school as I could while still passing my classes, but I still felt so trapped and miserable. I feel much the same way about jobs, but at least I have some choice over what jobs I do
Explaining school to a homeschooled child on the spectrum got a reaction of "you mean to tell me that you can't just leave when you want to? you can't learn whatever you're interested in? you have to go there every day, all day? why does anyone do that? it doesn't make any sense."
@@annerigby4400 Nice, that kid gets it. School is in many ways like prison
Same was the mine, l preferred exam as there was choice to go ,write n return on my own...odd one out in whole class
lol, yeah. the last 2 years of highschool I skipped almost everything and learned everything at home (which was possible because of the new covid file cloud systems)
This is the most accurate description of how I feel on a day to day basis. It’s not that I’m being difficult, it’s that I need to know all of the information that’s important to me so I can make the best decision for me.
YTer AUsome Training gave an amazing analogy for PDA:
Imagine the difference between someone asking you for a candy and you have an entire bag full versus them asking innocently and you have just one or two candies left. The change in vibe is palpable for anyone, but it is cranked up to 11 in expressions of PDA
@Autism Explained … Such great explanations, especially for me about the girl at the school not being forced and responding much more comfortably. About PDA, pathological demand performance is such an awful name and shows lack of sympathy for the challenges of the person. 😢 Perhaps, my thought or feeling is that another description would be much better and accurate such as Panicked Demand Performance.
An example: . I recall many times when wanting to do something (and this can happen to anyone even if not having PDA) , and I had already started the steps with great effort and time in my mind several days in advance working on the project and setting it out, and then after some days (more precisely I began a couple weeks in advance devoting much time, but three days was solely to the project with hours, many hours in my head focusing on the project) and then I started the rough details and organisation on paper and had a good idea of how to proceed which would have flowed quickly out and been done in one day with the next day to revise and perfect, so two days until perfection, and a third if I wanted more perfection or had interruption. However, the boss got nervous and a bit mad at not seeing anything, and actually she was the one panicked (a different panic than one might feel with PDA probably), although the project was not due until the next week, or rather two weeks later with the draft due the next week. So the boss, she did it herself, and had another staff do another part of it.
So basically over two weeks of my work, nearly three was wasted. What they produced was honestly not as good or detailed as what I was producing and was about to be done with, but they finished faster, sooner. They finished early, by one week.
After that, I had no joy in my work. I felt devalued and wasted, and I had been. The deadline had been at the end of two weeks ahead, the draft due the end of the next week, and yet they didn’t allow me to do it, but I already had spent extreme effort and time, dedicated solely to that.
What they didn’t know, because they couldn’t see it on paper and anything they might see would look like scribbles to them, though very ultra organised which they wouldn’t be able to see as they don’t know my shorthand, was that it was nearly done, and done well.
They did not like or understand my process, so they devalued and discounted it. After that and a series of such incidents (though that was severe because I had liked and wanted to share what I had been working on and finished planning and organising, in my head so of course they cannot see it) I felt panicked and anxious when something came up that was needed to be done, and frankly had much trouble doing that, anxious all my efforts would be wasted and have to be redone, or worse.
It sounds childish but the effort I went through was exhaustive (and this did not only happen once with them but repeatedly) and as I was near done in the last stage the focus I had been putting in and energy got all wasted, repeatedly. If it was something I cared about, as often was, and wanted to do, that was so awful to see it be wasted. Plus I gave up all other activities to focus.
It was very planned, very organised, very deliberately done by me. On rare occasion I got something to completion before all effort was discounted and wasted. Plus I was devalued and they felt like they had to force me as they wrongly assumed nothing was being done.
So, after such interactions, the feeling is dread, and it does become really hard to get things done.
Sometimes as a child or person in a vulnerable or lower position or position likely to recite judgement, it is better to give up and say no in advance if at all possible,
So if possible to avoid doing something or avoid agreeing to do something but perhaps doing it when nobody is looking, such as washing the dishes and cleaning up, felt or feels or can feel better.
Seriously, it isn’t pleasurable and can eventually become so traumatic that it isn’t possible to do even what we want (whether for ourself because we like it or to be considerate or lawful, following some required rules) because of this pattern of judgement and insistence that we do things in a way that doesn’t produce the results well when we try to do it that way.
These days, we may have to struggle against the built up trauma from such experiences, and it may be especially challenging to get anything done, including what we want to do.
So I suggested panicked demand performance.
Side note: It’s about taking away the choice AND potentially forcing someone to do what they cannot or may not be able to do. Normally I would avoid choosing things I’d have trouble doing, so basically 8m being forced into a situation where I may appear bad simply because 8m unable. Ironically even if it’s something 8 want to do, this gets me stressed out. It used to be all right but it has gotten progressively worse along with suspicion and manipulation being directed my way. Truly creating* a kind of trauma.
This is really helpful. I think with children it can be more complex when they additionally feel overwhelmed by choices/pressure/questions/have a need to get things RIGHT and a huge fear of not doing things correctly the first time. So it can be really confusing because I give my daughter more control or freedom but in some situations that just overwhelms her more, and she'd rather I make choices for her. As an ASD adult myself I understand some of it but our experiences are unique, especially when you've got other things going on.
I find so many of your videos very enlightening and relatable. I wish more people got this stuff.
Omg, you just explained to me the reason why I was so devastated at my previous job! (besides my shitty new boss there.)
The lack of choice: when it was about working from home because, you know, a deadly pandemic going on, my last company said: "you can work from home.... IF we allow it for each individual case!"
Of course, my choice would have been 5 days home. But nooo, this decision was taken away from me/my colleagues without any valid reason. The feeling of completely being at someone's mercy. Horrible.
I thought everyone would respond that way to the parking situation. 😆 I think my life may have just changed watching this. 🤯 It explains a LOT of daily life in my household. 🤔😮 And being tricked is VERY annoying... whatever it’s about. Glad you got free parking in the end, but I can appreciate how worked up one can get about the principle.
I've found that it has to do with routines in my case. I cannot cope with demands because I'm not in that routine yet. So at work if there is a 10minute task I can't do it and it'll take 2 days to get started, but if there is a block of work which lasts for several days or a week then I can get into that routine and stick with it. If the work dries up then I end up in the "doing nothing routine".
I'm just learning about PDA and ODD and I have realised that the behaviors my adult family who are autistic have are due to these conditions. It answers so many questions about how we all behave and try manage our anxiety. Thank you for all that you do to help people with autisim etc. You speak so clearly and you are easy to understand. I have subscribed.
Completely get the parking thing, I hate being tricked or forced in situations also. I want to be in controle and when that "choise-option" is taken away I get very upset, just like you!
Hey, Paul. PDA teacher here. Great advantage! Never had a kid have a meltdown.
Any tips on how best to get an 11 year old to do their homework without a full blown meltdown?
@@graemesault3967 Homework should only be done on hyperfocuses, otherwise it is a waste of time.
@@TheAutisticEducatorhyperfocuses?
@@ChrisBcards I'm autistic and an autism teacher as well. He is telling you it is useless to try to force it. At times, your child may enter a "hyperfocus" state: playing video games, going on the internet, etc to the point of losing sleep. Only during these states may you be able to effectively redirect his attention to something he will need to learn.
I have learned Spanish, music production, writing, reading, etc. only self taught. It's fundamentally irritating to have someone try to show me unless I ask.
For example, I have to do IEPs for the students. I don't like doing them. I do them when I enter a hyperfocused state -- which I do not control. I have to wait for it to happen, and when it happens I have to cancel all other plans.
I think what I'm trying to communicate is that you will never "control" the autism. Even as a full grown adult, with a regular job, I still am a slave to my disorder. I have to respect the disorder before I respect eating and sleeping.
@@graemesault3967 I'm autistic and an autism teacher as well. At times, your child may enter a "hyperfocus" state: playing video games, going on the internet, etc to the point of losing sleep. Only during these states may you be able to effectively redirect his attention to something he will need to learn.
I have learned Spanish, music production, writing, reading, etc. only self taught. It's fundamentally irritating to have someone try to show me unless I ask.
For example, I have to do IEPs for the students. I don't like doing them. I do them when I enter a hyperfocused state -- which I do not control. I have to wait for it to happen, and when it happens I have to cancel all other plans.
I think what I'm trying to communicate is that you will never "control" the autism. Even as a full grown adult, with a regular job, l am a slave to my disorder. I have to respect the disorder before I respect eating and sleeping.
Your videos are absolutely fantastic! I'm a therapist and work with people on the spectrum (and NTs) and also have many family members, including my partner who are on the spectrum. Additionally, I have ADHD and have been learning Demand Avoidance is a thing for some people with ADHD too -- and that definitely includes me. I've read about AD before and have watched other videos about it before but I never really "got it" before watching this! Oh, and I love your story about the 11-year-old girl. Thank you so much for sharing in it; I totally agree about the unfairness of potentially setting up preconceived judgments.
This is hard, it has been so hard, but is good to know I’m not alone 😢🥹
Holy cow! You are talking about me!
Regarding the parking incident: Yep, it's the principal. It's as if the world is filled with gotcha events. Ugh! I prefer to treat everyone with kindness, respect and charity.
Absolutely needed to hear this!!!!! I have a 24 year old with Autism and this made sense today!!! Thank you so much!!!!!
I didn’t see as much comparison between odd and pda as I was expecting, but still an excellent video. Thanks for the quality content.
Explained so well with car park story :). You said you need to have control because of your specific needs related to sensory issues for example but I got to 50 without really knowing what my needs are so that’s been fun ! Think I have adhd and pda/autism
The more of these I see, the more I understand myself. I have never been diagnosed, but I sure do relate to almost everything you talk about.
Word of my mouth, absolutely relatable to my situation...
Thank you for this video. It helps me to understand why I react so strongly to certain situations.
Thank you so much. I identify on so many levels with your experiences in those videos. Lately I didn't come to an ecologic event for which I had a reservation, only because I was forced to give "permission" being recorded for a TV program in order to have my free ticket. I was so frustrated being forced that I let down the occasion. Too bad, but I hate being seen and didn't want my private life being exposed on TV, being recognized by patients or close ones.
I don't quite struggle with this, because I have found a way to get around it most of the time. The immediate pushback feeling happens for me, but then I try to see it from a big picture perspective, or from somebody else's point of view, and that helps make it feel less personal. And if it's not personal, it doesn't bother me as much.
To take your example, maybe instead of thinking "I don't want to be recorded, why do they want to video me, I don't want people to see me" I would change perspectives and think "it must be a big deal to organize this event. They're probably wanting to take pictures of the crowd for promotional purposes or for getting funding in future, to prove that this is something that people are interested in."
And then I think "how much bother would it be if I were in charge of this and I wanted to video it for whatever reason, and there were a few people who didn't want to be recorded? That would not even work. I see why they have everyone sign the consent, because you never know where people will walk and maybe the ones who don't want to be recorded might walk by the in the background or something. I couldn't guarantee anything."
And so on. And then I can make a choice that is reasonable and not a reaction that's our of my control.
Thank you, Paul.
I seem to need “clarification” for a lot of situations. I’ve learned to ask questions until I have the answers I need.
So... not only did I discover that I was autistic through your channel... Now I feel as though you have described how my brain works with PDA. At around 4:21, you put words to my feelings. Thank you for developing your channel and explaining how you "operate." It is extremely helpful to know that I'm not broken, just different. Before I realized it was autism, I firmly believed I was completely flawed. Accepted abuse from everyone. When I learned I was autistic (thanks to you) I began healing. I have removed a lot of toxicity from my life just because of one 20ish minute video. You are changing people's worlds with your channel. Thank you!! From the bottom of my heart, thank you!!
Claustrophobia! That is SUCH a good way to describe how I feel
This happen to me occasionally in certain situations where a specific verbal response is excpected by me as out of social concvention. I go: "Oh, now they're excpecting me to utter this phrase again" and I freeze in anxiety and goes into a temporary shutdown. The same goes for folllowing some of the rules in a group setting. If the leader has told us not to do something, then I really feel the urge to do it and sometimes I do too! :D
Ironically NT:s also don't like feeling forced by us autists to do certain things - just in different situations. It becomes worse, because for me the only time I really enjoy my social life is when I can grab someone's arm and say "Come with me!". Already as a child when I sat in the front seat of Cessna, I turned around and told the children in the backseat: "Let's fly, shall we!"
You have made it make sense. I hope one day my son will be able to verbalise his needs, fears, anxieties etc as well as you one day. Thank you.
Years ago, a clinician tried to diagnose me with ODD, and I k ee it was so wrong. Being diagnosed with autism and adhd, I am now JUST hearing about PDA and it makes me so upset that it explains so much of my life, and yet it has been kept from me for so long. Thank you for the breakdown and for the validation. It feels like another piece has slipped into place, and so much weight has been lifted off of my shoulders. I finally feel what I consider normal.
Recently started working with an autistic young adult working through these issues. This video is very helpful.
Given all the negative crap low support needs divergent people get, you'd have to be quite unwell to choose to identify as ASD.
We do it because, as mentioned in the video, we go through a very long process, often lasting years before we hit upon the fact we might just be divergent. We then spend a long time thoroughly researching. The last thing we want is to be singled out even more. We risk the extra burden of guilt and shame on top of that which we've suffered all our lives, because wecan find some solace within ourselves and in the company of others.
The more we come out, the more adverse reaction we get, but the more we understand ourselves.
It's not a decision taken lightly.
This is my daughter. She has ODD, and has a major issue with having control. I’m definitely bringing up Demand Avoidance with her psychologist
Totally.
When I was a kid my mom sent me to camps where there were set activities and I was forced to partake along with everyone else, that caused "behavioral issues" and frequent calls home over me being "defiant" or "disruptive". Say everyone was going down to the river and I wanted to go swing on a swing at the playground and they wouldn't let me.
My dad sent me to a camp where we had to choose our own activities for the week, you coukd choose kayaking, biking, horseback riding, tennis, painting, etc. My dad was warned by my mom to expect me to be troubke and to get calls. Guess what? No issues at all, I happily did all my chosen activities and I could choose to keep them or change them next week. Loved it.
Can you imagine a boss telling an employee that they absolutely have to go to a bar with their coworkers on friday or else there'll be serious consequences? No option to say "I don't feel well, will pass this time".
Just brilliant. All this time I never knew this. Explains so much about me that I never
could have fathomed. Bless you and thank you 👍
Great tips; thanks. Absolutely get the need to always provide a choice. The difficulty comes when my daughter (who has a PDA) has made a choice but then can't follow through. We've made arrangements as per her decision but when the time comes to do something (e.g. go to an appointment) she's faced with the consequence of her decision. That feels like there's no choice - e.g. she's being reminded that people are waiting to take her to her to her appointment. Any tips on how to follow through the consequences of making a choice?
Autonomy is so important for mental health
I don't want to throw up. My anxiety about throwing up has ruled my life
Paul! This is so amazingly helpful for parents (and I'm sure autistic adults as well). Your examples really made the concept tangible. I found myself thinking, "Well, of course!"
Personally, I feel the need for others to be in perfect conformity to your thoughts is the problem, not the need to have choices and some degree of control over your own life. ODD and PDA are the more normal reaction. The "pathological demand" is what needs to be avoided, not that avoiding the demand is pathological.
Thank you for the great explanation! I’m dealing with someone who reports to me who suffers from this and I found this very helpful.
I need this so family can I understand my son thanks
This is such a valuable perspective and I appreciate your voice in this.
I finally get it. I am definitely PDA it just sank in Two hours ago.
I'm really upset because this profile matches me perfectly. But it's extremely personal to each individual. I was diagnosed late with ADHD. I see the trauma and anxiety in PDA that detrimentally affected me as a child. In fact, it led to compounding trauma because medical investigations were so hard on me. I am now so worried there's no solution here. If parts of my job, the thing I love, are triggering PDA, then I'm in real trouble. It's academic for people out there humming and hawing over whether it's real or not, whether it's autism or ADHD. I'm just rolled in a ball frozen with anxiety because I can't do a thing that's vital. Your video was one of the few places I felt someone was making a good faith effort to guide us.
Similar thing happened when I had to park in Chicago once. I entered a parking structure, decided I couldn't afford to pay, so I left immediately, without obtaining a slip allowing me to park. Then I began wondering "How am I gonna prove that I didn't park?" Then I started worrying that they were going to detain me on my way out
Thankyou such valuable advice. As a parent this is great information and very easily understood.
I understand these principles and have used them to smooth the relationship with my 25 yo autistic son. But how do i prepare him to live in a world where most others are not that informed or supportive?
I’ve seen a dozen or so of your other videos and liked them but this is perfect on a whole new level. Amazing to see someone be able to put it into words like that.
Thank you for this - you explain it so clearly and briefly, I can show it to teachers etc who haven't got a clue......
Cognitive behavioural therapy can help correct the idea that nothing should go wrong. If you accept that things WILL go wrong and have coping strategies it deals with every situation. The Chimp Paradox is a good intro to CBT.
Your channel is so helpful for me. I'm just starting to understand my life at 54 🤯
When something "feels like force", it's usually coercion, pressure, or duress (part of the force spectrum)
THIS. If it's mandatory I won't do it. If it's non critical, I won't do it either. And if I find out that my decision was influenced by people intentionally feeding me corrupt data in order to advance their agendas I'll explode.
Thank you so much for sharing your parking example! I'm currently working with a student I believe to have PDA. Trying to find strategies to help me help her!
Heh I remember having a total meltdown at camp in 7th grade when the camp counselors changed a game which I had planned to join in from an optional to a required activity
Yes! I've been scared of school settings my whole life
So is my son do you home school?
This video helped me so much. I didn’t want to take my friend to the pool at 4pm.
Even though I really wanted to swim and to see her. It’s later today and the avoidance was getting so bad that I wasn’t eating or showering or doing anything or taking any of my medication‘s or vitamins because I was avoiding going to the pool so much that the defiance was spilling over until literally every single activity I had to do.
I was getting so frustrated that avoiding doing something I wanted to do was effecting me so badly I was avoiding every just felt insane.
After this I calmed myself down and realized that since I’d said to myself for the last week that I needed to remember that I was going to the pool at 4pm today my brain was so anxious about forgetting that it just made me anxious and upset about the whole thing.
I still wanted to go swimming, I still wanted to see my friend, but 4pm was now a dreaded time of fear.
So I told myself “it’s fine we don’t have to go at 4, is 4:10 ok?”
And even though it was only 10 minutes my brain immediately relaxed and now I can do my daily routine and have no anxiety around it.
I messaged my friend and she said 4:10 actually works better for her so literally eveything is fixed and fine because I gave myself the ok to adjust the time.
I’m so excited about this! I’m really hoping this strategy can help me with other things I want to do but avoid
It's all true: I do tend to avoid pathological demands.
Some may call this "PDA."
I call it "TFM": _thinking for myself._
I've had 59 years of practice, and I believe I'm not bad at it. 😸
wow... great video! Thank you for uploading this! I've always felt so high maintenance but I relate to everything youre saying and it makes sense. I avoid going out with otheres because theyre usually like hey lets go here and do this and I will want to do that thing and have fun but its like the way they presented it turns me off... I HAVE to know what im walking into... idk how others just do things...I cant help but feel like im the problem sometimes so I just avoid others all together (":
I related to this very much. I'm not diagnosed with autism, but I know I'm on the spectrum (my adult son is dx'd on the spectrum). I also am an abuse survivor, so I have a very strong need to be in control....and this video helps me better understand why.
Thank you for sharing this information and tips.
Weird to hear this somewhere other than behind my eyes 😢🙏🥰
Thank you
Completely agree with the parking situation. It’s like the thought or possibility that someone has any authority or forced decision making over me is like literal kryptonite. I would have refused to pay. And fought about it.
You could have just gone by foot. Or parked somewhere else where you knew it was free and walked the last bit.
Suppose the workers who were hired to make and maintain the parking lot felt the same way?
Now no one had a parking lot and, thus, no one had a choice except to walk.
Now you are forced to walk.
Suppose you are the owner of this parking lot business. You want to keep your 6 employees who are loyal and have familiar but you are forced to fire one of them because you are not bringing in enough revenue to support 6 workers anymore.
My point is that choices are easy to make when you provide yourself with the majority of your basic needs. (Aka off grid, so to speak) If you can’t or won’t do that, you have to be willing to compromise, even when it makes you feel claustrophobic.
Otherwise you are just passing on your discomfort to someone else in a variety of small ways.
having multiple choices bit speaks to me as well as the little girl's story.
So many times as a child I was told "were doing this now, or come over here for a 'moment'. was always irritating because my attention was pulled away from what ever I was into.
Wow, that was a great explanation towards the end of your video! You described pretty much how I feel about what I need. I keep asking questions until I understand what I need to do for myself in situations. For example; I might ask if there will be stairs that I can use or will the only way up be an elevator? I’m claustrophobic in elevators.
I love the example you gave of your own experience! I felt frustrated listening to you tell it. It shows you really understand what having PDA can be like!
I love your example of your own experience. Imagine if everyone in the world adamantly resisted being controlled-- the slave system we are in would no longer exist.
This is something that became increasingly apparent to me over the years long before I realized I was autistic.
I can manage it to a fair degree but it's obvious to me that I have to manage myself in relation to this.
When I was younger I typically responded like a good little soldier happy to follow orders because it instilled confidence that I was acting rightly.
I was a bit of a self righteous little so and so at times unfortunately.
"Relying on me" is one of the more serious serious stressors for me but it's also more motivating so when I can maintain a balance it's fine but if anyone leans on me the wrong way it's definitely trouble.
Thankyou so much for your incredibly helpful, clear and concise presentations -you are such an excellent teacher on this subject.
This made my life!!! 🎉❤ thank you for your explanation, I feel this so hard! Thank you
I am just now learning about PDA. I feel like I don't completely understand it yet. Initially I would say I have no problem being told what to do, so it might not sound like me. I tend to be a people pleaser, I say yes to everything. I often feel like I have no clue what I am doing so when someone tells me what to do it feels more like direction and guidance which I greatly welcome. I would say I always did what I was told growing up and I always tried to do what I felt was expected of me. I feel like I was very compliant. I did not like making decisions. So being told what to do can bail me out from having to make a decision.
But I was also passive aggressive. I could be very stubborn at times. I feel like there is definitive truth or efficient ways of doing things. So if someone tells me how to do something but I feel like my way is better, more efficient, more correct, that I just know more than they do, or that their way is just not very good then I really don't want to do what they say and I am probably going to do it my way and not listen to them. And with the personal experience you shared I could see myself reacting/ feeling the same way you did.
I am just going to have to do more research on PDA. I always try to get lots of information from many sources when learning about new things like this before I start to understand it.
My son has pda initially we thought it was odd, later after he diagnosed with autism spectrum some of the things he did makes or made sense.
This is such a helpful explanation thank you, you are doing such an important job.
Story of my life. "Its not fair"...
Is the parking analogy a good description of the odd /demand avoidance?? It's so spot on for soo many of my stressful experiences..
Thank you for explaining my parking dilemma
Thank you so much for such useful information:) If there are any tricks to deal with internal demands? I find them the hardest. When I want to do something but I can’t. Is there a way to trick yourself into doing things? As I already know what exactly I want to do it, how it’s going to be done, when it’s going to be done. And even that I usually enjoy it. And I’m just stuck. Can’t do anything. Feels like a huge heavy rock that I need to carry. There are so many videos about communication with other with PDA, maybe there’s some tips on communication with ourselves?
It would be nice to get some advice on this.. I have it happen all the time things I want to do becomes a demand and I don't get around to doing it.. Thats not as bad as when I want to do things for family and tell them so and I end up not getting to it I feel very bad for not doing the said thing. Its one thing to not do somthing you wanted its another to not do somthing you really wanted to do for a loved one..
Thanks for this. l think l have a PDA disability and l've been doing youtube for nearly 4 years but still 3 years like l derely make something just for natural experiences and my doings of activities that l enjoy doing like doing vlogs and playing xbox games and l live going swimming and gym which meanly l also have like a sort of thing from physical health issues and diet problems and l love to talk about my life about me and my learning mental disabilty and l also suffer from social anxiety and sometimes panic attacks that l struggle to control my belongings and my reality of my thinking thoughts from the positivism rather then thinking about the negatives and sadness feelings about not gonna see my friends or talk to them again bcz of the covid 19 and it got me very threatening life conditions with my family and friends and toughely a challenging thought of social isolation. l always get mental difficulties with environmental near people and playing games with others and l struggle to not play too rough which l struggle with like roughly playing football with friends which can cause bullying and accidently hurting them and myself and start to lose confidence and talking to people online about subjects and information and l easily get nervous about something such as worrism and high feelings of society panic anxiety and sometimes when they demand me to do something like inviting me to join in games or when someone tells me to do something that l need to do something for them very important l just avoid it and l cant do it bcz l know l wont be able to manage like struggling to respond back at they messages and think what I'm gonna say back at them or fix everything also struggling to fix my xbox when it gets disconnected from xbox live & l become angry and upset bcz I can see someone in my mind and that person in my mind is bald and he has a troll face with a white head circle shape and that makes me very paranoid and angrier and mental but l do indeedly have pride in my soul and my integrity intelligence for helping my people that is going through with difficulties and mental illnesses so yeah I'm indeedly a nice person becides being my self and enjoying my time with friends on xbox but sometimes when they mean to me l become violent and after that l lost my mind and clearly it's not a bad thing l mean its pathetic to mention about bullies on xbox or the environment that l believe is sometimes scary or confusing or depressing when people stare at me sometimes l get a lack of confidence when I'm meeting new people for the first time to ever talk to and try think what can l say to them and l say your alright and they say alright and then afterwards l get a electrical feeling in my stomach and It makes me feel anxious and intense anxiety with my mental health and my wellbeing as like my following incredible life skills l do in college like communication skills or going to get a job which I'm struggling to apply for the company until when I'm 22 and try learn about my self and believe in myself that I am the real me and l learn to get good counting money and try give them my money after l did my shopping l felt anxious and they might think is that guy ok and l might talk to myself saying I'm not sure but was l just anxious or did l embarrasse that shop keeper and l was trying to get my shopping bag and l was taking for ever and then l had to pay with my bank card and l was struggling to behave like a normal humanbeing and l was uncontrollably laughing about they way l was doing or acting ou in front of the customers and that made me feel wierd and l become awkward when l cant control my emotions bcz it started since when l was 17 and it was a year ago andxl think I had it since 2011 and l think its getting better with my autism spectrum when I'm on the autistic spectrum disorder and that all what happended and l think l get that when l publicly act like a child but as an adult it feels like I'm in a movie and playing a character of paying for something or pretending to be someone that l never let them know who I truly am and l just hide myself so they might not know who l am that is trying to be a different person and l was scared to tell them I'm the same person that is hidden something like in xbox and l told them I'm not him and it feels like I'm lost and it changed my thinking and my relationships with others that l care for. l mean everyone is just different from the different sources of their own lives and nobody will not let you down it's just panic attacks and sometimes l feel out of touch and feel disconnected from others and from reality and l think that was PDA disabilty feel like if I'm right! Everybody has different opinions.
How are you doing now? Do you feel like you are still struggling? I hope you managed to keep contact with your friends and fix your xbox. I suffered a lot of anxiety in social situations until I realised the world has become so self obsessed most people are too absorbed within themselves to notice anyone else. When all the thoughts run at 101 miles a minute, be like an invisible breeze and observe the others like animals or specimens. That helps me, hope it helps you :)
Thank you for this video. This sums up a lot of my issues. It's good to begin to understand them so thanks for putting thos video together.
Wish my granddaughter had someone like u to help her.
Holy shit! I never even realized why paying for parking pisses me off so much until this moment! It's because the 'P' sign is generally a lie for lack of $ disclosure. If they'd just make the signs say $P or put the word hourly on it, I think my brain would process it differently.
This explains so much. Your best video yet, for me.
This reminds me of: The show Frasier has an episode where he gets into the parking ramp but changes his mind about parking, so he wants to drive out again. But they won't let him out unless he pays for having been in there. He then refuses to move and of course it all escalates.