While not officially a short story about PDA (given how long ago it was written (back in the year 1853)) you might find Herman Melville’s short story “Bartleby the Scrivener” to be an interesting read. It might indicate how PDA could potentially look in a workplace environment.
I can heavily relate to not liking praise and also not wanting to do something because someone told me to do it especially when the reason is “Because I said so” that really gets on my nerves.
From what I have read PDA can cause sensory sensitivities and sensory meltdowns even by itself. When combined with autism these symptoms can become more noticeable. Some parents have found that disposable training pants (even after being toilet trained for a while) can help with the stress of long car rides and other situations where restroom availability can be uncertain. If one decides to use this approach the most effective products would be the ones with superabsorbent polymers (such as Pampers Easy Ups, and possibly some store-brand products). The most calming products are the ones that expand the most (because pressure can be calming) and feel warm when wet (warmth can also be calming). If one is looking for a product with wetness indicators one option is the My Little Pony Easy Ups. The Bluey and PJ masks ones do not have the wetness indicators. Some pull-ups products also have the subabsorbent polymers and feel warm when wet. Some of the newer Pull-Ups products use wood pulp. This is more biodegradable but it may not expand enough to be comforting for the wearer when wet. Also I don’t know how much liquid the wood pulp ones hold vs the super absorbent polymer ones. As well as these products work for stress relief during long road trips (for example) they should only be a temporary measure. Overuse of these products might affect toilet training even in someone who has been trained for a long time (even perhaps a year or more). In time weighted blankets and other methods might work well enough to substitute for these for stress relief purposes.
Almost three years ago i was late-diagnosed with being a autistic adhder; have Dyscalculia. Terrible with math have only a third grade math level, it's hard to figure out how to cook, not the cooking part, though I have forgotten to turn the stove off time to time. It's the following the recipe parts i have issues with. Now, I'm really sure I have PDA. The way you described it sounds a GREAT deal like me. Except, I Don't ever remember being the bossy one; i was always the painfully shy one. I'll be 51 in three months time and i still live with my mother and sister. Never moved out, I seem to be always lost in some other fictional world, (or having a zillion art ideas that i can never bring myself to actually do...i can spend hours on Pinterest and UA-cam.) Maybe, if I can ever get on SSDI, I will be able to live on my own i mean. Hopefully someday soon. Most of the time they have to remind me to do things, & I'm not exactly thrilled with being told what to do. Don't even like it when i tell MYSELF what to do. The best way i can describe how all this feels* is: [My Autistic side is a Yellow Minion & my ADHD side is like a zillions of Purple Minions driving the solo yellow minion NUTS.] Pretty sure there's more i can say about this topic, but thanks to my ADHD-C part of my brain. I've lost my train of thought...oh well, what's a girl to do. (*kinda believe I have alexithymia as well.)
Thank you for sharing your journey with us! It takes a lot of courage to talk about personal experiences like yours. Remember, you're not alone in this, and it's okay to seek help and support when you need it.❤❤❤
I don’t know if I have PDA or not but I was diagnosed with Mild Depression when I was in high school (back in the early 1990s). It is not severe enough to require medication but it is there. I live with it by keeping busy and by only ordering food and soft drinks when I go to restaurants or bars (since alcohol is classified as a depressant).
I know an adult with PDA. I have known her for decades and while she was never diagnosed, she would have been if she were a child now. The sad part is, she is highly intelligent and has had a very unsuccessful life because she cannot hold a job, cannot carry through on any task, is late for every appointment, and not just ten minutes late, She will show up hours late and expect everyone to carry on as if she was on time. That's just a sample of her problems. It's very sad.
It's really tough to see someone struggle, especially when their potential is so clear. Awareness and understanding can make a big difference in navigating these challenges.❤❤❤
My sister gave up on learning to ride a bike after she fell down and scraped her knee the first time. She was around twelve years old at the time. This is why even now (in her early 50s) she still has not learned how to ride a bike. She fell because the bike had training wheels on it and one of the training wheels went over a tree root throwing the bike off balance. I explained this to her (I was eight at the time) but I guess I didn’t explain it well enough because she never got back on the bike. I was tempted to do the same later on when I fell down myself for a different reason but in the end I kept at it and learned to ride over the course of that year.
She does not ride a bike because her parents did not teach her as 3-4 years old, when falling is not so painful, and at 12 it was too late andtoo dangerous. Things need to be learnt by a certain age. At age 4 learning to ride a bike is very easy.
@@MishaSkripach That’s somewhat true but my mother taught me how to ride when I was eight years old and I still learned. I learned to balance during that year but it took me a couple years to be good at it (probably about twice as long as average) but I still got there. I think she could have probably learned also if she kept practicing (even if it ended up taking four years instead of two, for example). Also, practicing on a lawn in a back yard (on mostly level ground) where there are no driveways or roads seems just as safe at age eight or twelve as it does at age three or four. I also know that it was the training wheels that were preventing her from learning because I asked her how she would ride without training wheels and she said “As slowly as possible”. That was how she was riding when the training wheels were still on the bike. More specifically, when I asked her to explain again in more detail how she would ride (pausing for a minute or two to give her enough time to think about her answer) she told me that she would first try to balance without moving the bike forward at all, then try it at one mile per hour, then two miles per hour, and so on. I then explained to her that that method does not work. That was in 2008 when she was in her thirties. She insisted that she would learn in this way or not at all. Since her suggested method cannot possibly work she ended up not learning how to ride a bike at all. When I rode my bike (with a speedometer on it) I found that balancing at speeds of less than five miles per hour is quite difficult. But at five miles per hour and faster balancing is quite easy (once you get used to it (It was this part that took me a couple of years. Avoiding obstacles like trees and picnic tables was also difficult for me, initially.)). I explained all of this to her (giving her several minutes to process it each time) but (for some reason) she still insisted that her way was better.
@@thomasschoeck9080 We had a balance bike, at about 2 y old each of us went on it then riding actual bike was not a problem. My friend's sister learned at 6 and she cried a lot.
I don’t know if my sister has PDA or not but she doesn’t like praise for things that have been demanded of her. She’s level one and always has been. She once explained this to me by telling me that she doesn’t like this type of praise because it sounds sarcastic and/or phony. This would have been when she was in high school reading Catcher in the Rye by Salinger back in the 1990s.
Hello fellow 90s kids I can also relate so many labels 🏷 we need to let kids be kids even with labels I think all of the ones of us that have or will have kids can agree 👍 to that degree at least lol 😅
I thought that was just part of anxiety and autism. Now it's got a whole seperate name? Like how autism is now "neurodiversity". I don't see how changing the name changes how to treat it. It's called "I don't want to do something and I'm allowed to get out of it because I have a disability". That's ableism. I struggle to do a lot of things, but I refuse to stop trying or label my way out of living. Autism, anxiety, and I just want to live my life without worrying what to call my difficulties. Plus, perfectionism is part of OCPD and that's very common in people with Asperger's, etc.
Very understandable. Yes, terminology can help people understand one another and what they are going through. Understanding where you’re at can also help you to move forward and make progress in a positive direction.
How can a 2y old have it? Age 2 is a time to just start learning to work on demands? It is a learning time, you need to teach your kid, he does not know how to react to demands!
@@7Aheadfamily Awesome Topic! PDA sounds like it can affect adults 2 of any age. (Not just the common love one). Additionally it sounds like Pathalogical Demand Avoidance (PDA) can be common in families or form from stress or other situations. Really interesting how adults can be affected and yet they might not know they’re affected.
I recently asked Microsoft copilot some questions about whether a product like Pampers Easy Ups (for example) would be helpful for someone with level one autism and PDA who is four years old and has been trained for around a year and it indicated that yes these products can be useful under these circumstances. It indicated that children with level one autism and PDA can feel overwhelmed in a situation like a traffic jam or a long car ride where rest rooms can be far away and where there are seemingly no choices. It suggests the use of traditional distraction techniques first like stories, playing with toys, and games like “I Spy”. If these prove to be inadequate then seeing a familiar character on the product (like Bluey for example) can help with dealing with the stress. Also if it becomes too uncomfortable to hold it the child understands that he has a choice about how to respond to this. In the event that the child chooses not to wait he can have the experience of watching the wetness indicators change which can be interesting (almost like a science experiment) during the toddler and preschool years (or even slightly longer (given that these types of products go all the way up to size 5T-6T)). As long as this is reserved for certain unusual situations like traffic jams, long car rides, long flights, and other situations where a rest room might not be readily available it shouldn’t effect training all that much. That being said after using these products (during a very long road trip (or a long vacation) for example) there is likely to be a transitional period during which accidents of either or both types are likely to occur. As long as a parent does not go back to using any type of diaper during this time (except at night (and maybe the early morning hours)) the situation should resolve in a short time (sometimes as little as a few days, usually within a week or two, almost always within a month)).
When I took a computer networking test earlier this year I put it off for much longer than I probably needed to, so I can relate to this one also. I passed but I have the feeling that it was only barely.
I'm level 1 autistic and I think I have this. I remember praise making me uncomfortable as a child but not so much anymore. I'm not sure if it has anything to do with that, but I've always hated my birthday, especially being sung to. I hate having a day all about me. I tend to act controlling when I'm anxious, and demands can trigger that anxiety. I struggle with making commitments to do things, even if I'm being paid for it, because once it's "omg, I HAVE to do this now" I don't want to do it anymore. If I have a choice I'll want to do it, but once it's mandatory I don't want to. I make music and I have abandoned so many remixes halfway through after working so hard on them. I tend to avoid new uncertain situations. I've always struggled with authority in a way, I get really upset when authority figures enforce rules on me because I've always been good law-abiding citizen so maybe I feel like I'm not "bad" enough to need to be told what to do. Some of that may also come from my background of childhood abuse and emotional neglect though. Like, I know how to follow rules, I don't need to be told. I even get upset when someone thinks I did something wrong but I really didn't.
@@7Aheadfamilyin the UK you have to wait a few years to even get a diagnosis my official autism one can take up to 2 to 3 years like why 2 to 3 years?? like it makes no sense!?also btw how are yall??
I remember the idea of turning a chore into a game from the movie Mary Poppins. Turning a chore into a game was not allowed when I was growing up because he (like his parents did) believes that it causes a child to become spoiled.
I was just using Microsoft copilot a short time ago and asking it hypothetical questions about how a three-year-old who only has PDA would handle various toilet training challenges including traffic jams. I asked for both factual descriptions and stories and in each case it confirmed that PDA itself can cause sensory sensitivities and difficulties with changes in routine. Factor in level one autism (for example) and these can become more noticeable. The answers that I received were pretty much ones that I knew already like some of the pros and cons of disposable training pants and car seat protectors for situations like long car rides and traffic jams. Near the 30 question limit I asked about the hypothetical of a three-year-old with only PDA who is afraid of the sound of the toilet flush in preschool. The suggestions that it gave in both factual and story form indicate that the use of ear plugs and gradual adjustment to the sound of the toilet flushing could be helpful in that type of situation. This might be relevant for someone who is four years old and has both PDA and autism (for example). Copilot also listed some online videos with loud toilet flushing sounds that might help with this. I did not save the results because I don’t know for certain how helpful it would be but I thought I would mention the basic ideas anyway just in case. To me it looks like these ideas might help some people but not others depending on any individual differences.
Simon’s reaction to seeing the drawing of the toilet in the most recent preschool video seems like it either relates to the subject of this video or maybe he’s afraid of public toilets or unfamiliar toilets again. Maybe the sound of the toilet flushing bothers him. A number of things can cause the sound to change (or at least seem to change) and possibly be more scary. 1. A new toilet might have been installed at the school. 2. The town or city might be doing some work on the water mains and that might effect water pressure and in turn the sound of the running water. 3. Simon might have forgotten how the toilet at the preschool sounds after being away from the preschool for most of the Summer. If that’s the case he might still be readjusting to it. I remember every year of Elementary School for maybe the first month the toilets (and even the sinks) at school would sound louder and more scary. There may be other explanations for this but these are the main ones that currently come to mind.
It is sad the medical community doesn’t recognize it. My daughter is autistic and she was said to have it but they said we can put it on the paperwork because it is not recognized in the United States and they don’t have a DSM code for it. I agree it is very real and so hard for the kids.
Seeing you put Ezra’s shoes on reminds me that he should probably have a pair of shoes that he can learn how to put on himself. This is not ideal in all situations (as could be seen in the video about the Niagara Falls trip) but it’s still an important skill for him to learn. Maybe this pair of shoes can be for shopping trips, trips to the park, for walks around the neighborhood, and around the house.
When I was growing up my mother would give me a choice of two or three outfits to wear (or two or three sets of pajamas to choose from before bed). My father was of the opinion that this prevents children from learning gratitude and respect for one’s parents or other elders.
My sister still often tends to resist brushing her teeth if someone demands it of her. I was the same way until (I think) about first or second grade (age seven or eight). I started to brush more after my first cavity.
Well… I have ODD (and ADHD, ASD etc) but with this maybe, I have no idea. But I do HATE to fail with something and will refuse if I see any chance of failing. But my feelings then I am forced and I fail or gets cheers for something I dont like. With medicine in me I send a very angry look… if not I can very much start fighting.
An important thing about giving choices is to not give too many choices. Some years ago a study was done on the ease of choosing ice cream flavors when a different number of choices were presented. It was found that decisions (even by adults) were made most easily if the selection was narrowed to two choices (such as chocolate and strawberry) or three choices (such as chocolate, strawberry, and vanilla).
Helping to lift the burden is a good idea up to a point but it can backfire if you go too far with it. For example, when my sister was growing up my mother would brush her teeth for her during her childhood and even into her early teens (at least). In addition she would also cut her food for her even into her high school years (even food items like chicken fingers) and this caused her to take years longer to learn important skills even though her motor skills are normal and she’s level one. I was still level two at that age (I’m now level one) but I was expected to do more activities on my own and in most instances I was eventually able to (even if it took months to years more than average).
Regarding Level 1 Autism and PDA as it relates to the ability to lie/play tricks. While PDA is not associated with anywhere near the level of manipulative behavior that you would see with other conditions that you probably hear about in the media that doesn’t necessarily mean that you won’t see any manipulative behavior. For example, about two years ago the level one grandson of a friend of mine (who is older than Simon but younger than Ezra) who may or may not also have PDA had a fight with his younger level 2 brother over a toy fire truck. I came over to talk to the grandmother and while I was sitting on her porch he kept looking at me, then the toy fire truck, and then back at me. I had the sense that he wanted to play with it and I reached my arm out and almost picked it up. Fortunately it occurred to me to ask the grandmother when I noticed that the two grandsons were sitting on opposite ends of the porch (which is fairly unusual for them) what was happening. At that point she explained the situation and I obviously did not pick up the toy fire truck. Like Simon he was a late talker and had a quite a bit of speech therapy and social skills training and I think he still gets some of that off and on as needed. One effect of that, though, is that he learned how to make eye contact so well that he almost tricked me without saying a single word. Given that I am level one I might have potentially fallen for his trick if I had less sleep, didn’t have my morning coffee that day, or wasn’t paying enough attention. I am mentioning all of this because in the next year or two Simon’s social skills might reach this level and he might potentially be able to play a similar trick on someone his age or older if he has a fight with Ezra over a toy car or something else that they both want to play with at the same time and it gets taken away from him. Since that time the grandmother and the parents seemed to have nipped this behavior in the bud and I have seen no additional deceptive behavior from the one who is level one and may have PDA. The other one who is level two (like I was growing up) is not yet officially in the numbered grades but is older than Simon and from the looks of it has no concept of lying or deception just yet. Like me the concept will probably need to be explained to him by age seven or so to prevent him from falling for any tricks from his older sibling and any of his peers.
There are two kids in my area who have autism and one of them may have PDA as well but they’re not sure yet. The one who may have PDA is level one like Simon and has dyslexia. If Simon struggles with reading and penmanship in first grade some time in the next couple of years (like he does) you will want to have him checked for dyslexia. In any case back when the kid in my neighborhood who may have PDA was four-and-a-half years old one day his grandmother told him to go potty and take a bath and he refused and called her a “poo-poo-head-dum-dum” during a temper tantrum on her front porch that I happened to see on the way back from lunch one day. This was a number of years back. He seems to have outgrown these tantrums but from what I have been told his teachers indicate that he is sometimes not cooperative especially in reading and English classes. In theory you might see this with Simon in the next three to four years as he goes into first or second grade but if you luck out he might not go through that. Only time will tell. I don’t know if Simon ever does this but between now and when he turns four-and-a-half about a year after he started preschool it is possible so you might need to prepare for what you will do in that event. In that case you might need to figure out whether time outs are the best option or whether there’s something else that will work either instead of or in addition to time outs.
My son is autistic ( they score it bye severity not level in the uk) he’s severe , adhd severe and PDA . The PDA is something I have been unclear on but this video is super useful….. he does all this!!!
For me if I'm told I have to do something I fell terrible anxiety and can't function when I finally do that wanted task. It has to be on my own time that I do a certain task.
Regarding Pampers Easy Ups and wetness indicators: It looks like some of my earlier web search results on this topic were inaccurate. I just did some more searching online about the product features and it looks like the My Little Pony ones have the wetness indicators but the PJ Masks and Bluey ones do not. Otherwise the Easy Ups have all of the same features and all of the other benefits for road trips that the ones with the wetness indicators would have.
I don’t like the name either. One person in my family heard about it earlier this year and thought that it was another name for Antisocial Personality Disorder (ASPD). From what I have read they are not the same. Also, I just read late yesterday that (even more confusingly) PDA and Oppositional Defiant Disorder (ODD) are distinct conditions even though they might have some symptoms in common. I am aware of ODD because while I do not have that diagnosis myself it is not uncommon for people on the spectrum who also have Right Hemisphere Syndrome (also known as Right Hemisphere Deficit Syndrome (or occasionally Semantic Pragmatic Disorder)) to initially be erroneously diagnosed with ODD. I first read about that while browsing in a local bookstore over ten years ago.
This is very interesting, I’m very late diagnosed level 1 Autism, and all these signs resonate with me, I have to fight very hard when any sort of ‘demand’ is placed on me, even if I the one who places that demand, it can be a huge struggle to do the thing and not keep avoiding beginning to do that task. I have a paper pad that I write on the things I need to do in the house, then and only when I feel able I do something on the list, eventually all the jobs will get done, but not until I can cope with doing them, often some of the job stay on the list a very long time, but having the list takes the pressure of, because I’ve acknowledged they are jobs that I have to do, and because they are on the list they will get done, but only when I’m ready, hope that makes sense. Many times over the years I have said I wanted to do something, then when the thing changes from I want to do it to I have to do it I feel huge panicky so much that I ‘cannot do it’ I want to run I want to escape hide anything but do that one thing, it’s hard to cope with because it makes no sense, I want to do it but when the ‘demand’ comes that I now have to do it I can’t. It’s a hard thing to cope with, this video has really helped. Helped me understand what going on, it makes so much sense now. Thank you
If you got them to do the dishes don't say anything until they are done, then a simple "thank you" is good enough. I'm pda and I definitely know why being praised in the middle of doing what I was told to do makes me want to stop doing it. Also do not give excessive praise about it either it feels so false. My mind automatically goes to "you're just saying that so I'll want to do more things you want me to do"
I have all the 7 signs, for me doing homework is difficult. I remember one day my dad told me to do my homework so 30 minutes later I started doing it, then he said "Very well done, you are so smart" I started to cry and I ran away and I hide behind a door. It's much better for me to have choices. When someone demands me something it takes me more time to do it and if for example I can't do something perfectly I stop doing it. My reaction is normally ignore the demand. One day I was doing some work on my laptop and the teacher said "Don't forget to do..." and I stopped doing it because I got anxious, I just watched the screen and nothing more. About stop doing something I knew to do, I used to wash my face every day but I suddenly stopped doing it and now I can't make me do it I don’t know why.
I agree with all of these. And the anxiety is terrible. It feels like I’m being suffocated. Another thing on the demands. If I am going to do something like the dishes or walk to a room in the doctors office and someone starts giving directions even though I know where to go and what to do, I can’t do it anymore
Regarding other examples of fictional characters that may have PDA either with or without autism: Chuckie on Rugrats seems to be a possible example of that. It is most evident in the potty training episodes “Chuckie vs the Potty” and “Potty Training Spike”. And now for a non-potty-training-related example of this three examples of characters that might have this are the original Cutie Mark Crusaders (CMCs) Apple Bloom, Sweetie Belle, and Scootaloo. On the other hand it’s less certain in their case because their pattern of doing an activity once and then giving up was actually taught to Apple Bloom (The Founder of the CMC) in the episode “Call of the Cutie”. Rainbow Dash (arguably) reinforces this later on in the episode “The Cutie Mark Chronicles”.
I just remembered that I was recently (I think within the past month) watching an EC (Elimination Communication) video on Andrea Olson’s UA-cam channel and one technique that she mentioned for reducing resistance to either EC or Potty Training is to say “Good pee-pee!” Or “Good Poo-Poo!” when you get the desired result in that area instead of saying “Good boy!” Or “Good girl!”. If Simon’s daytime potty training is still on track that’s very good and you should do everything reasonable to keep it that way. In connection with Simon’s PDA you might be able to apply the same basic idea that I mentioned above in order to get more of the results that you are looking for with Simon whether it is doing chores or whatever else you might want Simon to keep doing when you see him doing it.
Regarding giving choices and picking your battles: Here’s a hypothetical that seems like it would be fairly likely given Simon’s age and how recently daytime trained he is (around last Thanksgiving, I think). Let’s say you’re driving somewhere and you get stuck in traffic. It’s bumper-to-bumper stop-and-go traffic and there’s nowhere to pull over. Also, Simon has had one (perhaps even two) Sippy cups of juice. Simon tells you that he needs to go and he’s not wearing a pull-up, easy up, or other diaper because you’re not on a long road trip and you’re not expecting him to fall asleep. Also, you didn’t bring a portable urinal or other receptacle because you were in a hurry and forgot it at home and you don’t really know if Simon can wait until you get home (or to any other rest room that he would be able to use). At this point you give him two choices as follows: 1. He can try to wait until he gets home and “go potty” there (on the toilet). 2. He can instead choose not to wait and “go car seat” where he is. Given his level one autism he might start to get the concepts of “car seat” and “potty” mixed up if you call it “going potty” in situations like this so you might want to use a different term like “go (or going) car seat” in those instances. If he opts for option two it’s technically an on-purpose rather than an accident but it’s not actually misbehavior because he would be doing it with permission. If Simon opts for the second option in this hypothetical whether he can technically wait or not (only he knows for sure in this instance) there are two options for what to do after you get home. 1. You could hand Simon a bath towel and have him assist with the car seat cleanup. In normal circumstances (especially before I knew about Simon’s PDA) I would suggest a natural consequence such as this one but no punishments (including timeouts). Or 2. You can (in this particular instance) handle the entire car seat cleanup yourself, give no punishments, get him cleaned up and gently (in a non-demanding way) request a couple hours later that he use the toilet so that he gets used to using the toilet again as soon as possible. Also later on you reduce the frequency of events like this hypothetical by (somehow) gently changing the schedule to include more bathroom breaks when you are doing errands, going on picnics (and the like), etc. Given the circumstances of this hypothetical and Simon’s PDA which options would be best in the scenario above?
Perhaps help Simon clean up his mess in a supportive way but then in the future, request for him to go to the bathroom before or when a bathroom is available💕💕
@@7Aheadfamily Like maybe you could start the cleanup of a small area with a wash cloth and then he could use a colored (e.g. dark blue, dark green, or black) bath towel that doesn’t stain easily to clean the rest. Also I read recently that cloth diapers can also be useful for cleaning such messes because they are often made of microfiber these days and they are very absorbent. By the way Target still sells Gerber cloth diapers near the disposables. They are technically smaller than Ezra and Simon’s sizes but given enough of them there are several methods to make them work. For example, when it comes to Ezra’s training you might try a variation of the “underwear in the diaper without taping it in place” technique that my mother used with me when I was five-and-a-half years old in preschool back in the early 80s. In this instance the cloth diapers can be folded and placed inside Ezra’s underwear in whatever quantity is needed and then a pair of plastic pants could go over the top of the underwear. This should allow Ezra’s clothes to be protected if he “goes” on long car rides, at picnics, in church, etc. while still feeling the wetness if he “goes”. One area where cloth is actually potentially worse than disposable when it comes to training is that due to evaporative cooling it becomes noticeably colder versus most disposables. From what I have read from people online who remember wearing cloth before disposables became popular they would sometimes decide to rewet them in order to warm them up again if they become too uncomfortable. This is just one of several reasons why regular changes are important with cloth diapers. Still occasional use of cloth diapers can help with building an understanding of the connection between wetting and feeling wet while providing protection of one’s clothing (at least in theory). I did not wear cloth when I was young but the pampers of the early 1980s (pre-1986) functioned more like a cloth diaper than most of today’s disposable products so I can see how that might work.
Thats what I have. Aspergers and pda. For me when I am calm, my pda really isnt too bad, but if i have had an upset during the day, its bad. For example I feel very hot and cross and the space of a very short period of time and then I sometimes shout or throw stuff.
I was wondering whether you think that Simon’s wetting accident in his car seat during that shopping trip last September was caused in some way by his PDA or whether he was confused and opted to “let go” because he was getting uncomfortable and thought that he had a diaper on. It could have been the second one because diapers and underpants can sometimes feel very similar. I would sometimes make that mistake myself (back in the late 1970s and early 1980s) when I was around the age that Simon was on that shopping trip up until at least age five-and-a half when I was in preschool. This kind of mistake would be pretty likely (even without PDA) if you were switching Simon back and forth between underpants and diapers at that point in time. Incidentally the colored underwear suggestion that I gave in some earlier comments is most useful when a child can look down and actually see the underwear and verify by appearance that it is not a diaper. This is most useful while playing in a play room or perhaps a back yard during potty training. My mother often had me play around the house (or in the back yard when weather permitted) in just my underwear (sometimes with socks on as well) while I was training so I could look down and see what I was wearing before deciding whether or not to “let go” on a specific occasion. When Simon was in his car seat that time he likely could not look down and see whether he was wearing regular underwear (preferably colored underwear) or a diaper of some kind. He would only know if he remembered in the moment what was put on earlier that day and if he was too tired or stressed out that might have caused him to not remember this correctly and perhaps make a mistake as a result. Which one of these two possibilities seems more likely in that particular situation?
Asking questions can be a good idea but some questions can be confusing. For example if a child is having a wetting accident (or any kind) and a parent asks a child who is either on the spectrum or early in the training process a question along the lines of “Is someone going pee-pee (or poo-poo)?” he or she might find it confusing like I did when I growing up.
In my neighborhood there is a kid with level two autism who is still struggling a bit with potty training. Apparently the potty watch and timers have helped him a bit but potty charts have absolutely no effect. As far as I know he has not been diagnosed with PDA so I don’t know if it’s a PDA thing or a level two thing. When I was growing up my parents did not use a potty chart with me so I don’t know if I would have trained more quickly with one or not. This was back in the 1970s and 1980s and I think people started using potty charts mostly in the 1990s to 2000s.
I did some recent searches on Microsoft copilot (as well as google) and I had the AI compare and contrast Level 1 Autism with no intellectual delay in combination with PDA, and Level 2 autism (without specifying any level of intellectual delay) and I noticed that the comparisons including the amount and type of sensory sensitivities, and when various developmental milestones are reached (on average) lines up fairly closely. I wonder if maybe one reason that I don’t hear about level two as much is that some kids (for reason or another) who are level two are misdiagnosed with level 1 in combination with PDA.
You already did a video about Potty Training as it relates to autism. Maybe you can also do a video about potty training as it relates to PDA. This morning I just asked Microsoft Copilot (with GPT-4 turned off) the question: At what age do children with PDA finish toilet training? The closest it came to answering this was in its final two lines of output before an ad for Pull-Ups and listing 7 sources. It said: “Remember, each child is unique, and the timeline for toilet training varies. Some children with PDA may take longer, but patience and understanding go a long way.” Above that it listed behaviors seen in children with PDA when they are nervous about toileting such as hiding, crying (as Simon can be seen doing during the regression section of the potty training video about autism), and verbal withdrawal. This makes me wonder if Simon (who has PDA) ever hid before “going” (like Ezra sometimes either does or did) at any point during the toilet training process. If Simon ever hid did he have a favorite hiding place (for taking care of potty breaks, as it were) like Ezra before he started using the toilet consistently? I also wonder how long ago you learned that Simon has PDA. For example did you know that Simon has PDA either before or during his daytime potty training? I don’t remember hearing about that. After listing hiding, crying, or verbal withdrawal Microsoft Copilot listed the following eight tips for navigating the toilet training process with a child who has PDA. I won’t list the complete text here, just the parts in bold (the eight numbered suggestions) as follows: 1.Stay Calm 2. Break it Down 3. Choose Battles Wisely 4. Empower with options 5. Be creative 6. Patience and Positivity 7. Never Force 8. Comfort Matters This was followed in the Microsoft Copilot output by an ad for (in this instance) size 2T-3T pull-ups. Now that I have listed the main points enumerated by Microsoft Copilot I will expand on them with my own observations as follows: I don’t know if I have PDA (since back in the 1970s, 1980s, and 1990s they were not testing for it yet). Even though I was still level two back then (I’m currently level one) I probably would have been diagnosed with this as well if they had that diagnosis back then. Regarding Staying Calm: A good example of this is from the time that Simon had a doctor’s visit about a week after he started preschool to have the braces on his feet looked at. When you asked him “Oh, did you go poo-poo?” and later said to him something like “That’s not a jungle gym.” these would be examples of pointing out and gently correcting behaviors with a combination of understanding and humor. Break it down: This involves having a set of manageable steps for the child to follow when it comes to toileting. Your autism potty training video already goes into some detail about this but if you eventually do a future video about potty training as it specifically relates to PDA you might decide to expand on this. Choose Battles Wisely: My mother did this with me sometimes. Sometimes when I was potty training if I was very anxious/stressed out and resisting a lot more than I usually did she would take me off of the potty chair or toilet and leave my diaper off and put me in regular underwear and regular clothes that would be dark colored and fairly easy to clean. Then she would get me some snacks for later and take me on a walk around the neighborhood. If I showed signs of having to “go” during the walk such as doing a potty dance or perhaps bending my knees or squatting she would have me sit on her lap and try to go there in order to work on the mechanics of it. If we were bowel training she would also have me push my feet against a large rock, a tree stump, or even her hands. If I managed to “go” she would give me some juice and/or a snack as a reward. After I got home any clothes that I managed to “use” (with her permission and/or gentle encouragement) would go into the wash and her clothes would also be washed. She actually gave me some verbal praise in this situation a good percentage of the time but she kept it mild and lowered her volume (almost like how Fluttershy usually talks on My Little Pony) to keep from overwhelming me too much. If I managed to “go” in a more preferred location (such as a toilet) I would be given one of my favorite rewards such as a small amount of ice cream or a small lollipop. In the neighborhood walk scenario I would be given a different snack that would be my second, third, or fourth favorite snack instead. On shopping trips the approach would be similar but I would be sitting in a shopping cart with regular clothes and no diaper but some folded bath towels, a beach towel, or even an old sweatshirt instead with something like an old crib liner under that. This approach also ties in with Empowering with options and being creative. Regarding Patience and Positivity: The Microsoft Copilot suggestion on this about being understanding and celebrating small victories would apply here. For example if Marie had managed to get Simon to do anything (#1 or #2) on the toilet after the car seat wetting during the Dollar Tree shopping trip any such victory would be celebrated. Likewise when Simon said “Oh no, Potty!” either before or (more likely) during the car seat wetting he would in all likelihood be gently praised or gently rewarded for telling his mother about what was happening. Any such reward would be noticeably smaller than the reward for making it to the toilet so that he would understand that given the choice the toilet should be the primary place to “go potty” not the car seat. That being said on the subject of choosing one’s battles, empowering with options, and being creative it would probably be fine to allow for some very rare car seat usage(for either #1 or #2 (either with or without a diaper or other “backup” (in elimination communication (EC)) terms)) instead of making him wait in certain exceptional situations such as traffic jams or other rare circumstances where a toilet may not be readily available. Regarding “Never Forcing” it looks like you made the right call having Simon sit on your lap and finish his smoothie (or whatever it was) after his first day of preschool even if you happened to notice him pushing/bearing down (a concept that Andrea Olson describes in some of her EC (Elimination Communication) blogs and videos). Taking him to the toilet at that point to finish up would have likely been too stressful for him and due to his PDA it likely would not have helped him to train any faster than he did during the day. In fact, when you asked him afterward(very gently in my opinion) “Did you?” and he answered the question he seemed to be scared even though (as far as I know) he has never been punished in any way for anything like that. I’m guessing that this is a combination of his level one autism and his PDA at work (what percentage of each went into that in this instance I am not sure of (Maybe you have some ideas on that)). Regarding “Comfort Matters” a toilet seat that is sufficiently soft and warm can help during the training process. My parents did not have that when I was younger but my mother did help me to be comfortable while learning to use the big toilet by having me sit on her lap (first with diaper , and then after getting used to that for a bit, later without one) while using the big toilet initially. Before that I used a potty chair. For me this potty chair to big toilet transition was some time after my fourth birthday (I think I might have been as old as four years and three months by then.). Simon took less time than this to learn how to use the big toilet (He was up to six months younger than I was when he learned how to do that.) so maybe it’s an example of the difference between level one (like Simon) and level two (like me at that age) whether I happen to have PDA or not.
Now that I know that Simon has PDA I have to wonder when he was younger and he was talking to his toys and not using words to communicate with people whether it was his level one autism, his PDA or both that were causing this. If it was both how much of a factor do you think each one was in this? Last year around this time before Simon started preschool I was wondering if he also had apraxia of speech like Ezra because at times their symptoms sometimes looked similar if Ezra was wide awake and Simon was tired and/or stressed out but it looks like their conditions are more different than I originally thought even though they are both on the spectrum. Now I’m hoping that Ezra learns to control the muscles in his mouth well enough to say “hi”, “bye”, and some other words that he can eventually use to communicate some of his needs like “food”, “water”, “juice”,”hungry”, “thirsty”, “tired”, “bath”, and “bed”. Yes and no would also be good words for him to learn eventually along with some other functional words. I remember from The Miracle Worker (I read it Freshman Year in High School in the 1990s) that “water” was Helen Keller’s first word. Maybe Ezra can learn this word soon. If he does it will be a good start in the journey toward eventually becoming verbal. It will take a while but if Broca’s area, Wernicke’s area and his motor cortex are working he should eventually get there (especially since he usually seems to understand what’s going on around him pretty well, most noticeably in videos since about January or February of this year).
My father thinks that giving choices is almost always a mistake because the child will walk all over the parent(s) if this is done. For example if a child is given the choice of using the potty chair or toilet or going in his or her car seat he is of the opinion that most (if not all) children will opt to go in their car seat until at least the age of four or five.
I'm sorry I don't have a direct link, since that doggy backpack was a gift and we can't seem to find it online, but here is a link to some other doggy backpacks. amzn.to/3LMiS2I
During sports day we are required to sit down unless we are going to an event i know its because of safety reasons but they would constantly repeat it over and over again i was fine sitting down on my own but once they said it over the announcement i would stand up until a teacher came up tue me directly and told me to sit down because i don't like to get in trouble but by the end when the staff did a relay race i get too exited seeing teachers i know racing and start jumping and moving this year was slightly different as well because we had a little dance as the year nines were finishing their races and i was stimming like crazy running at the back of the area we were allowed to be in racing my friends because that's what they wanted as well and i could not sit down i had a lot of energy at that point the only other time i sat down when we were told was when i was in the tiny bit of shade with the 100 other students in the area i still got burned because i don't like wearing sunscreen an when someone tells me to i don't want to but I'll put it on myself when i want to do it.
In my experience I've always hated being praised for things I was told to do. It feels wrong, upsetting and frustrating. When someone demands I do something I feel trapped, and I freeze. Even if it's something I love to do! So I might want to play guitar, then my parents say "You should play guitar, you haven't in a while" and that will make me feel upset and I won't be able to do it because I feel like I'm not in control of the situation. I also have issues being consistent with things, because as soon as something becomes an expectation, I get incredibly overwhelmed and hate doing it. I've had many hobbies I dropped because people started expecting me to engage in those hobbies. Usually what helps me is choices. So for example if rather than being told "Shower" I'm told "You can shower before or after dinner, what would you prefer?" I'll be able to choose and it will work. Unless then I am told "You have to shower now" when the moment comes, since that defeats the whole purpose. My therapist didn't diagnose PDA, but she said it in much less flattering terms saying I want everything under control and only do what I choose to do. Also I was wrong guessing it was Ezra! I would have actually never thought it was Simon. I even thought it was Benson before thinking Simon!
I have to fight my urge to try to refuse to do anything that people tell me what to do the only reason I tolerate it for my job is well money 💰 of course but rather than that good luck trying to tell me what to do
I don’t like the name pda either. It’s more of just an extreme need for autonomy. It cannot be changed or worked through. It’s an instant anxiety driven reaction of fight flight or freeze when anyone (even yourself) places a spoken or unspoken demand on you. Edited to add: PDA is very often misdiagnosed as oppositional defiance disorder.
I dont know whethever i had PDA becsuse bsck in my day as only child at home mevother diblings were adults libing away it was a bit like an only child i was spoilt rotton. I fo know thst at nursery if a fladh card was hrld up i was one of very bright ones ejo knew words but eouldnt put hsnd up snd say them while other kid's were present how much of this was pda, how much autism, how much school anxity and shyness we font know. But ive a feeling i was like thtough all of school and college yo a lesser degree difnt really like group discussions even at college. Even in my forties fidnt like mock job interviews etc i just felt overwhelming pressure and paronia became a big thing in last seven years
It's important to start by consulting a pediatrician or a child psychologist who specializes in neurodevelopmental disorders. They can guide you through the assessment process and help you get the right support for your child.❤
@@7Aheadfamily Most likely Autism my sister even said she always thought I was on the spectrum than having ADHD which that test I took in Feb 2020 & they said I didn't have ADHD
If you don't like the name you could call it "Pervasive Drive for Autonomy" instead. Some people in the autistic community use it. I don't have PDA but I've always struggled with perfectionism and anxiety.
I have also seen the term pervasive (or persistent, perhaps) drive (or desire, perhaps) for autonomy on Reddit and some other sites as recently as yesterday. As far as I know I don’t have PDA, but then again who knows? I have never been tested for it. I might have it. I’m usually a bit of a perfectionist and I sometimes have anxiety in connection with this.
Huh interesting 🤔 I learn more new terms on the daily and yet somehow I feel many of the things described sounds like what was just a normal part of growing up in a 90s type childhood 🙃 😅 for me lol they have all new names and labels why can't we still help kids while letting them be kids is my opinion on it these kids are gonna grow up with these terms thinking theres something wrong with their way of being human when theres actually not and to me thats the part I don't understand it just seems to me to be more detrimental and not actually helpful at all 😅
This is extremely helpful. For example, if a child does not have PDA then your reaction and your response is Parent will be quite different than compared to a child with PDA. PDA means that anxiety comes from the expectation. Most kids do not have anxiety when they have an expectation put on them. A Diagnosis makes a huge difference to help the parent know how to better support the child
@thomasschoeck9080 for me I don't get nervous I just hate it like whenever I survive I'm school back when I was in mainstream I would get praised my mum told me I think yesterday my grandpa doesn't like being praised either
@ For me nervousness is one aspect of it. Another is if I was praised for something fairly minor it would feel phony/condescending. For example, if I was praised for making the honor roll that felt real. On the other hand if I was praised for washing and drying my hands before eating that felt phony. Both of these examples were from when I was in High School. By that time I was washing and drying my hands for around a decade (rounded to the nearest decade). I don’t actually know if I have PDA or not. I have never been diagnosed with that but most of the signs in this video fit and when I listed them off in a recent phone call with my parents they indicated that they fit me better than I know. I should say, though, that some of my symptoms can also be attributed to being on the autism spectrum (I’m currently level one but I was level two during childhood.) and the effect of complications of a premature birth (in my case this included a small right hemisphere stoke around the time of birth.) I am already officially diagnosed with autism and what they call right hemisphere syndrome (My right hemisphere syndrome was caused by the stroke around the time of my birth.) It is interesting for me to think about whether I might also have PDA (since it gives me some insight into why I might do some of the things that I do) but at my current age (late 40s) there would probably currently be no reason for me to get that diagnosis in addition.
From what I remember PDA is much more like an anxiety disorder than what its name would imply. I have been visualizing it in terms of various My Little Pony characters (in terms of their personalities and some of their struggles) and a literal interpretation of the name of the condition (which again they should change as soon as they can) conjures up mental images of Cozy Glow and Lightning Dust. A more accurate description/depiction of PDA that shows that it is more akin to an anxiety disorder (such as Social Anxiety) shows that a more accurate MLP-based mental image can be pictured in terms of Twilight Sparkle (especially in Seasons 1 and 2), Rainbow Dash (especially in the episodes Sonic Rainboom, and Testing Testing 123), and Fluttershy (especially in the episodes Hurricane Fluttershy, and Luna Eclipsed). There are probably other fictional (e.g. MLP-based examples) that would also be reminiscent of PDA (whether the MLP writers for the Friendship is Magic series have heard of PDA or not).
His vocabulary seems to still be a bit behind but not as much as it was. For example, at the time of that Dollar Tree shopping trip last September Simon’s speech seemed to be one or even two years behind (at least in terms of more social words like “uh-oh” and “oh no”) but now the delay seems to be a bit more subtle. Maybe it’s six to nine month delay now.
![Is Simon no Longer Autistic? [HPRT]](/img/n.gif)
Hey Friends, Here is the Link for that communication document. 7-ahead.com/communication
Fantastic Document!
Thanks for Grabbing that!
@@7Aheadfamily 😊
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While not officially a short story about PDA (given how long ago it was written (back in the year 1853)) you might find Herman Melville’s short story “Bartleby the Scrivener” to be an interesting read. It might indicate how PDA could potentially look in a workplace environment.
That’s awesome! Thanks for sharing. ❤️
I can heavily relate to not liking praise and also not wanting to do something because someone told me to do it especially when the reason is “Because I said so” that really gets on my nerves.
Interesting, yeah I think most people don’t like that because I said so. 😊
Do you think you have enough other signs that maybe you have PDA?
@@7Aheadfamily I’m not exactly sure.
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From what I have read PDA can cause sensory sensitivities and sensory meltdowns even by itself. When combined with autism these symptoms can become more noticeable. Some parents have found that disposable training pants (even after being toilet trained for a while) can help with the stress of long car rides and other situations where restroom availability can be uncertain.
If one decides to use this approach the most effective products would be the ones with superabsorbent polymers (such as Pampers Easy Ups, and possibly some store-brand products). The most calming products are the ones that expand the most (because pressure can be calming) and feel warm when wet (warmth can also be calming). If one is looking for a product with wetness indicators one option is the My Little Pony Easy Ups. The Bluey and PJ masks ones do not have the wetness indicators. Some pull-ups products also have the subabsorbent polymers and feel warm when wet. Some of the newer Pull-Ups products use wood pulp. This is more biodegradable but it may not expand enough to be comforting for the wearer when wet. Also I don’t know how much liquid the wood pulp ones hold vs the super absorbent polymer ones.
As well as these products work for stress relief during long road trips (for example) they should only be a temporary measure. Overuse of these products might affect toilet training even in someone who has been trained for a long time (even perhaps a year or more). In time weighted blankets and other methods might work well enough to substitute for these for stress relief purposes.
Thank you so much for sharing.
Almost three years ago i was late-diagnosed with being a autistic adhder; have Dyscalculia. Terrible with math have only a third grade math level, it's hard to figure out how to cook, not the cooking part, though I have forgotten to turn the stove off time to time. It's the following the recipe parts i have issues with.
Now, I'm really sure I have PDA.
The way you described it sounds a GREAT deal like me.
Except, I Don't ever remember being the bossy one; i was always the painfully shy one.
I'll be 51 in three months time and i still live with my mother and sister. Never moved out, I seem to be always lost in some other fictional world, (or having a zillion art ideas that i can never bring myself to actually do...i can spend hours on Pinterest and UA-cam.)
Maybe, if I can ever get on SSDI, I will be able to live on my own i mean. Hopefully someday soon.
Most of the time they have to remind me to do things, & I'm not exactly thrilled with being told what to do. Don't even like it when i tell MYSELF what to do.
The best way i can describe how all this feels* is:
[My Autistic side is a Yellow Minion & my ADHD side is like a zillions of Purple Minions driving the solo yellow minion NUTS.]
Pretty sure there's more i can say about this topic, but thanks to my ADHD-C part of my brain. I've lost my train of thought...oh well, what's a girl to do.
(*kinda believe I have alexithymia as well.)
Thank you for sharing your journey with us! It takes a lot of courage to talk about personal experiences like yours. Remember, you're not alone in this, and it's okay to seek help and support when you need it.❤❤❤
I don’t know if I have PDA or not but I was diagnosed with Mild Depression when I was in high school (back in the early 1990s). It is not severe enough to require medication but it is there.
I live with it by keeping busy and by only ordering food and soft drinks when I go to restaurants or bars (since alcohol is classified as a depressant).
Thanks for sharing. Yeah, food and drinks can really make a difference.
I know an adult with PDA. I have known her for decades and while she was never diagnosed, she would have been if she were a child now. The sad part is, she is highly intelligent and has had a very unsuccessful life because she cannot hold a job, cannot carry through on any task, is late for every appointment, and not just ten minutes late, She will show up hours late and expect everyone to carry on as if she was on time. That's just a sample of her problems. It's very sad.
It's really tough to see someone struggle, especially when their potential is so clear. Awareness and understanding can make a big difference in navigating these challenges.❤❤❤
My sister gave up on learning to ride a bike after she fell down and scraped her knee the first time. She was around twelve years old at the time. This is why even now (in her early 50s) she still has not learned how to ride a bike. She fell because the bike had training wheels on it and one of the training wheels went over a tree root throwing the bike off balance. I explained this to her (I was eight at the time) but I guess I didn’t explain it well enough because she never got back on the bike.
I was tempted to do the same later on when I fell down myself for a different reason but in the end I kept at it and learned to ride over the course of that year.
Great job for persevering!
Yeah, learning how to ride a bike is no easy task.
She does not ride a bike because her parents did not teach her as 3-4 years old, when falling is not so painful, and at 12 it was too late andtoo dangerous. Things need to be learnt by a certain age. At age 4 learning to ride a bike is very easy.
@@MishaSkripach That’s somewhat true but my mother taught me how to ride when I was eight years old and I still learned. I learned to balance during that year but it took me a couple years to be good at it (probably about twice as long as average) but I still got there. I think she could have probably learned also if she kept practicing (even if it ended up taking four years instead of two, for example).
Also, practicing on a lawn in a back yard (on mostly level ground) where there are no driveways or roads seems just as safe at age eight or twelve as it does at age three or four.
I also know that it was the training wheels that were preventing her from learning because I asked her how she would ride without training wheels and she said “As slowly as possible”. That was how she was riding when the training wheels were still on the bike. More specifically, when I asked her to explain again in more detail how she would ride (pausing for a minute or two to give her enough time to think about her answer) she told me that she would first try to balance without moving the bike forward at all, then try it at one mile per hour, then two miles per hour, and so on. I then explained to her that that method does not work. That was in 2008 when she was in her thirties. She insisted that she would learn in this way or not at all.
Since her suggested method cannot possibly work she ended up not learning how to ride a bike at all.
When I rode my bike (with a speedometer on it) I found that balancing at speeds of less than five miles per hour is quite difficult. But at five miles per hour and faster balancing is quite easy (once you get used to it (It was this part that took me a couple of years. Avoiding obstacles like trees and picnic tables was also difficult for me, initially.)). I explained all of this to her (giving her several minutes to process it each time) but (for some reason) she still insisted that her way was better.
@@thomasschoeck9080 We had a balance bike, at about 2 y old each of us went on it then riding actual bike was not a problem. My friend's sister learned at 6 and she cried a lot.
I don’t know if my sister has PDA or not but she doesn’t like praise for things that have been demanded of her. She’s level one and always has been. She once explained this to me by telling me that she doesn’t like this type of praise because it sounds sarcastic and/or phony. This would have been when she was in high school reading Catcher in the Rye by Salinger back in the 1990s.
Thanks for sharing!
Yeah, defiantly could be.
Hello fellow 90s kids I can also relate so many labels 🏷 we need to let kids be kids even with labels I think all of the ones of us that have or will have kids can agree 👍 to that degree at least lol 😅
Thank you for sharing! ❤️
The repetitively controlling others sign is probably why some people confuse this condition with Antisocial Personality Disorder (ASPD).
Probably so. Easy to do for sure.
My sister and I both tend to repetitively avoid new things that are uncertain.
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I thought that was just part of anxiety and autism. Now it's got a whole seperate name? Like how autism is now "neurodiversity". I don't see how changing the name changes how to treat it. It's called "I don't want to do something and I'm allowed to get out of it because I have a disability". That's ableism. I struggle to do a lot of things, but I refuse to stop trying or label my way out of living. Autism, anxiety, and I just want to live my life without worrying what to call my difficulties. Plus, perfectionism is part of OCPD and that's very common in people with Asperger's, etc.
Very understandable. Yes, terminology can help people understand one another and what they are going through. Understanding where you’re at can also help you to move forward and make progress in a positive direction.
Hi, I watch most of your videos and they help a lot. We just found out my autistic 2 year old has PDA and These videos really help. Thank you
We are so glad our videos have helped you!💙💙
What other videos would be helpful to you?❤
How can a 2y old have it? Age 2 is a time to just start learning to work on demands? It is a learning time, you need to teach your kid, he does not know how to react to demands!
Thank you Holly and Adam and entire 7Ahead Family!!! Great video. I learned so much.
Thank you so much for watching and commenting ❤️.
It’s an interesting topic, right?
Do you feel like anyone in your circle of friends has PDA?
@@7Aheadfamily Awesome Topic!
PDA sounds like it can affect adults 2 of any age. (Not just the common love one). Additionally it sounds like Pathalogical Demand Avoidance (PDA) can be common in families or form from stress or other situations. Really interesting how adults can be affected and yet they might not know they’re affected.
So true!
I recently asked Microsoft copilot some questions about whether a product like Pampers Easy Ups (for example) would be helpful for someone with level one autism and PDA who is four years old and has been trained for around a year and it indicated that yes these products can be useful under these circumstances.
It indicated that children with level one autism and PDA can feel overwhelmed in a situation like a traffic jam or a long car ride where rest rooms can be far away and where there are seemingly no choices. It suggests the use of traditional distraction techniques first like stories, playing with toys, and games like “I Spy”. If these prove to be inadequate then seeing a familiar character on the product (like Bluey for example) can help with dealing with the stress. Also if it becomes too uncomfortable to hold it the child understands that he has a choice about how to respond to this. In the event that the child chooses not to wait he can have the experience of watching the wetness indicators change which can be interesting (almost like a science experiment) during the toddler and preschool years (or even slightly longer (given that these types of products go all the way up to size 5T-6T)).
As long as this is reserved for certain unusual situations like traffic jams, long car rides, long flights, and other situations where a rest room might not be readily available it shouldn’t effect training all that much. That being said after using these products (during a very long road trip (or a long vacation) for example) there is likely to be a transitional period during which accidents of either or both types are likely to occur. As long as a parent does not go back to using any type of diaper during this time (except at night (and maybe the early morning hours)) the situation should resolve in a short time (sometimes as little as a few days, usually within a week or two, almost always within a month)).
Thank you so much for sharing your insights with us💕💕
When I took a computer networking test earlier this year I put it off for much longer than I probably needed to, so I can relate to this one also. I passed but I have the feeling that it was only barely.
Congratulations!
That’s awesome
I'm level 1 autistic and I think I have this. I remember praise making me uncomfortable as a child but not so much anymore. I'm not sure if it has anything to do with that, but I've always hated my birthday, especially being sung to. I hate having a day all about me. I tend to act controlling when I'm anxious, and demands can trigger that anxiety. I struggle with making commitments to do things, even if I'm being paid for it, because once it's "omg, I HAVE to do this now" I don't want to do it anymore. If I have a choice I'll want to do it, but once it's mandatory I don't want to. I make music and I have abandoned so many remixes halfway through after working so hard on them. I tend to avoid new uncertain situations. I've always struggled with authority in a way, I get really upset when authority figures enforce rules on me because I've always been good law-abiding citizen so maybe I feel like I'm not "bad" enough to need to be told what to do. Some of that may also come from my background of childhood abuse and emotional neglect though. Like, I know how to follow rules, I don't need to be told. I even get upset when someone thinks I did something wrong but I really didn't.
Yeah, sounds like if you were in the UK you would have a diagnosis. 😊
@@7Aheadfamilyin the UK you have to wait a few years to even get a diagnosis my official autism one can take up to 2 to 3 years like why 2 to 3 years?? like it makes no sense!?also btw how are yall??
Labels 🏷 for normal childhood development yay lol says a fellow 90s kid lol 😅 😂 😉 😜 😘 😉 😜 😘 🕊
I remember the idea of turning a chore into a game from the movie Mary Poppins.
Turning a chore into a game was not allowed when I was growing up because he (like his parents did) believes that it causes a child to become spoiled.
Thanks for sharing ❤️❤️❤️❤️
Great example
I was just using Microsoft copilot a short time ago and asking it hypothetical questions about how a three-year-old who only has PDA would handle various toilet training challenges including traffic jams.
I asked for both factual descriptions and stories and in each case it confirmed that PDA itself can cause sensory sensitivities and difficulties with changes in routine. Factor in level one autism (for example) and these can become more noticeable.
The answers that I received were pretty much ones that I knew already like some of the pros and cons of disposable training pants and car seat protectors for situations like long car rides and traffic jams.
Near the 30 question limit I asked about the hypothetical of a three-year-old with only PDA who is afraid of the sound of the toilet flush in preschool. The suggestions that it gave in both factual and story form indicate that the use of ear plugs and gradual adjustment to the sound of the toilet flushing could be helpful in that type of situation.
This might be relevant for someone who is four years old and has both PDA and autism (for example).
Copilot also listed some online videos with loud toilet flushing sounds that might help with this. I did not save the results because I don’t know for certain how helpful it would be but I thought I would mention the basic ideas anyway just in case.
To me it looks like these ideas might help some people but not others depending on any individual differences.
Thank you for sharing!❤
Simon’s reaction to seeing the drawing of the toilet in the most recent preschool video seems like it either relates to the subject of this video or maybe he’s afraid of public toilets or unfamiliar toilets again. Maybe the sound of the toilet flushing bothers him.
A number of things can cause the sound to change (or at least seem to change) and possibly be more scary.
1. A new toilet might have been installed at the school.
2. The town or city might be doing some work on the water mains and that might effect water pressure and in turn the sound of the running water.
3. Simon might have forgotten how the toilet at the preschool sounds after being away from the preschool for most of the Summer. If that’s the case he might still be readjusting to it. I remember every year of Elementary School for maybe the first month the toilets (and even the sinks) at school would sound louder and more scary.
There may be other explanations for this but these are the main ones that currently come to mind.
Thanks for sharing ❤️
It is sad the medical community doesn’t recognize it. My daughter is autistic and she was said to have it but they said we can put it on the paperwork because it is not recognized in the United States and they don’t have a DSM code for it. I agree it is very real and so hard for the kids.
Right! Thank you for sharing your experience.
Do you think that the United States will eventually start diagnosing for this like in the UK?
@@7AheadfamilyThey should. The fact that PDA isn’t recognized is apauling! I work in the medical field as a volunteer and PDA isn’t known.
@@7AheadfamilyI have not looked at the latest DSM but I do remember that this was not in DSM IV or DSM IV-TR back in the day.
@@7AheadfamilyMaybe they should but they should probably change the name to something that sounds less negative first.
Seeing you put Ezra’s shoes on reminds me that he should probably have a pair of shoes that he can learn how to put on himself. This is not ideal in all situations (as could be seen in the video about the Niagara Falls trip) but it’s still an important skill for him to learn. Maybe this pair of shoes can be for shopping trips, trips to the park, for walks around the neighborhood, and around the house.
Yes!
Simon does put his shoes on by himself for the most part now. :)
When I was growing up my mother would give me a choice of two or three outfits to wear (or two or three sets of pajamas to choose from before bed). My father was of the opinion that this prevents children from learning gratitude and respect for one’s parents or other elders.
I like your mom’s options. 😊
Thanks for sharing
My sister still often tends to resist brushing her teeth if someone demands it of her.
I was the same way until (I think) about first or second grade (age seven or eight). I started to brush more after my first cavity.
Cavities make us more careful. 😊
Experiencing the real life effects of choices can make a difference
Well… I have ODD (and ADHD, ASD etc) but with this maybe, I have no idea. But I do HATE to fail with something and will refuse if I see any chance of failing. But my feelings then I am forced and I fail or gets cheers for something I dont like. With medicine in me I send a very angry look… if not I can very much start fighting.
Thank you for sharing! ❤️
An important thing about giving choices is to not give too many choices. Some years ago a study was done on the ease of choosing ice cream flavors when a different number of choices were presented. It was found that decisions (even by adults) were made most easily if the selection was narrowed to two choices (such as chocolate and strawberry) or three choices (such as chocolate, strawberry, and vanilla).
Very good advice! Thank you for sharing ❤️
Helping to lift the burden is a good idea up to a point but it can backfire if you go too far with it.
For example, when my sister was growing up my mother would brush her teeth for her during her childhood and even into her early teens (at least). In addition she would also cut her food for her even into her high school years (even food items like chicken fingers) and this caused her to take years longer to learn important skills even though her motor skills are normal and she’s level one.
I was still level two at that age (I’m now level one) but I was expected to do more activities on my own and in most instances I was eventually able to (even if it took months to years more than average).
So True!
Thank you so much for sharing that example!
Regarding Level 1 Autism and PDA as it relates to the ability to lie/play tricks.
While PDA is not associated with anywhere near the level of manipulative behavior that you would see with other conditions that you probably hear about in the media that doesn’t necessarily mean that you won’t see any manipulative behavior.
For example, about two years ago the level one grandson of a friend of mine (who is older than Simon but younger than Ezra) who may or may not also have PDA had a fight with his younger level 2 brother over a toy fire truck. I came over to talk to the grandmother and while I was sitting on her porch he kept looking at me, then the toy fire truck, and then back at me. I had the sense that he wanted to play with it and I reached my arm out and almost picked it up. Fortunately it occurred to me to ask the grandmother when I noticed that the two grandsons were sitting on opposite ends of the porch (which is fairly unusual for them) what was happening. At that point she explained the situation and I obviously did not pick up the toy fire truck.
Like Simon he was a late talker and had a quite a bit of speech therapy and social skills training and I think he still gets some of that off and on as needed. One effect of that, though, is that he learned how to make eye contact so well that he almost tricked me without saying a single word. Given that I am level one I might have potentially fallen for his trick if I had less sleep, didn’t have my morning coffee that day, or wasn’t paying enough attention.
I am mentioning all of this because in the next year or two Simon’s social skills might reach this level and he might potentially be able to play a similar trick on someone his age or older if he has a fight with Ezra over a toy car or something else that they both want to play with at the same time and it gets taken away from him.
Since that time the grandmother and the parents seemed to have nipped this behavior in the bud and I have seen no additional deceptive behavior from the one who is level one and may have PDA.
The other one who is level two (like I was growing up) is not yet officially in the numbered grades but is older than Simon and from the looks of it has no concept of lying or deception just yet. Like me the concept will probably need to be explained to him by age seven or so to prevent him from falling for any tricks from his older sibling and any of his peers.
Thank you for sharing your insight💕💕
There are two kids in my area who have autism and one of them may have PDA as well but they’re not sure yet.
The one who may have PDA is level one like Simon and has dyslexia. If Simon struggles with reading and penmanship in first grade some time in the next couple of years (like he does) you will want to have him checked for dyslexia.
In any case back when the kid in my neighborhood who may have PDA was four-and-a-half years old one day his grandmother told him to go potty and take a bath and he refused and called her a “poo-poo-head-dum-dum” during a temper tantrum on her front porch that I happened to see on the way back from lunch one day. This was a number of years back. He seems to have outgrown these tantrums but from what I have been told his teachers indicate that he is sometimes not cooperative especially in reading and English classes. In theory you might see this with Simon in the next three to four years as he goes into first or second grade but if you luck out he might not go through that. Only time will tell.
I don’t know if Simon ever does this but between now and when he turns four-and-a-half about a year after he started preschool it is possible so you might need to prepare for what you will do in that event.
In that case you might need to figure out whether time outs are the best option or whether there’s something else that will work either instead of or in addition to time outs.
Thank you for sharing! ❤️
My son is autistic ( they score it bye severity not level in the uk) he’s severe , adhd severe and PDA . The PDA is something I have been unclear on but this video is super useful….. he does all this!!!
Thank you for sharing with us!💕
For me if I'm told I have to do something I fell terrible anxiety and can't function when I finally do that wanted task.
It has to be on my own time that I do a certain task.
Thank you so much for sharing. ❤️
Regarding Pampers Easy Ups and wetness indicators:
It looks like some of my earlier web search results on this topic were inaccurate.
I just did some more searching online about the product features and it looks like the My Little Pony ones have the wetness indicators but the PJ Masks and Bluey ones do not. Otherwise the Easy Ups have all of the same features and all of the other benefits for road trips that the ones with the wetness indicators would have.
I don’t like the name either. One person in my family heard about it earlier this year and thought that it was another name for Antisocial Personality Disorder (ASPD). From what I have read they are not the same. Also, I just read late yesterday that (even more confusingly) PDA and Oppositional Defiant Disorder (ODD) are distinct conditions even though they might have some symptoms in common.
I am aware of ODD because while I do not have that diagnosis myself it is not uncommon for people on the spectrum who also have Right Hemisphere Syndrome (also known as Right Hemisphere Deficit Syndrome (or occasionally Semantic Pragmatic Disorder)) to initially be erroneously diagnosed with ODD. I first read about that while browsing in a local bookstore over ten years ago.
Thank you so much for sharing ❤️
You know your stuff. 😊
This is very interesting, I’m very late diagnosed level 1 Autism, and all these signs resonate with me, I have to fight very hard when any sort of ‘demand’ is placed on me, even if I the one who places that demand, it can be a huge struggle to do the thing and not keep avoiding beginning to do that task. I have a paper pad that I write on the things I need to do in the house, then and only when I feel able I do something on the list, eventually all the jobs will get done, but not until I can cope with doing them, often some of the job stay on the list a very long time, but having the list takes the pressure of, because I’ve acknowledged they are jobs that I have to do, and because they are on the list they will get done, but only when I’m ready, hope that makes sense. Many times over the years I have said I wanted to do something, then when the thing changes from I want to do it to I have to do it I feel huge panicky so much that I ‘cannot do it’ I want to run I want to escape hide anything but do that one thing, it’s hard to cope with because it makes no sense, I want to do it but when the ‘demand’ comes that I now have to do it I can’t. It’s a hard thing to cope with, this video has really helped. Helped me understand what going on, it makes so much sense now. Thank you
We are so glad our videos were helpful!❤❤
Thank you for sharing!💜💜
If you got them to do the dishes don't say anything until they are done, then a simple "thank you" is good enough. I'm pda and I definitely know why being praised in the middle of doing what I was told to do makes me want to stop doing it. Also do not give excessive praise about it either it feels so false. My mind automatically goes to "you're just saying that so I'll want to do more things you want me to do"
Thank you for your insight💕
I have all the 7 signs, for me doing homework is difficult. I remember one day my dad told me to do my homework so 30 minutes later I started doing it, then he said "Very well done, you are so smart" I started to cry and I ran away and I hide behind a door. It's much better for me to have choices. When someone demands me something it takes me more time to do it and if for example I can't do something perfectly I stop doing it. My reaction is normally ignore the demand. One day I was doing some work on my laptop and the teacher said "Don't forget to do..." and I stopped doing it because I got anxious, I just watched the screen and nothing more. About stop doing something I knew to do, I used to wash my face every day but I suddenly stopped doing it and now I can't make me do it I don’t know why.
Thank you for sharing.
Are there any other tips or things that you have found to be helpful with PDA?
Why do you have access to youtube if you struggle with your homework?
I agree with all of these. And the anxiety is terrible. It feels like I’m being suffocated. Another thing on the demands. If I am going to do something like the dishes or walk to a room in the doctors office and someone starts giving directions even though I know where to go and what to do, I can’t do it anymore
Declarative language is sometimes helpful too
Thank you for sharing!💙💜💙
Regarding other examples of fictional characters that may have PDA either with or without autism:
Chuckie on Rugrats seems to be a possible example of that.
It is most evident in the potty training episodes “Chuckie vs the Potty” and “Potty Training Spike”.
And now for a non-potty-training-related example of this three examples of characters that might have this are the original Cutie Mark Crusaders (CMCs) Apple Bloom, Sweetie Belle, and Scootaloo. On the other hand it’s less certain in their case because their pattern of doing an activity once and then giving up was actually taught to Apple Bloom (The Founder of the CMC) in the episode “Call of the Cutie”. Rainbow Dash (arguably) reinforces this later on in the episode “The Cutie Mark Chronicles”.
Thank you for sharing your thoughts with us!💙💙💙
I just remembered that I was recently (I think within the past month) watching an EC (Elimination Communication) video on Andrea Olson’s UA-cam channel and one technique that she mentioned for reducing resistance to either EC or Potty Training is to say “Good pee-pee!” Or “Good Poo-Poo!” when you get the desired result in that area instead of saying “Good boy!” Or “Good girl!”.
If Simon’s daytime potty training is still on track that’s very good and you should do everything reasonable to keep it that way.
In connection with Simon’s PDA you might be able to apply the same basic idea that I mentioned above in order to get more of the results that you are looking for with Simon whether it is doing chores or whatever else you might want Simon to keep doing when you see him doing it.
Thank you for your insight!❤❤
Regarding giving choices and picking your battles:
Here’s a hypothetical that seems like it would be fairly likely given Simon’s age and how recently daytime trained he is (around last Thanksgiving, I think).
Let’s say you’re driving somewhere and you get stuck in traffic. It’s bumper-to-bumper stop-and-go traffic and there’s nowhere to pull over. Also, Simon has had one (perhaps even two) Sippy cups of juice. Simon tells you that he needs to go and he’s not wearing a pull-up, easy up, or other diaper because you’re not on a long road trip and you’re not expecting him to fall asleep. Also, you didn’t bring a portable urinal or other receptacle because you were in a hurry and forgot it at home and you don’t really know if Simon can wait until you get home (or to any other rest room that he would be able to use).
At this point you give him two choices as follows:
1. He can try to wait until he gets home and “go potty” there (on the toilet).
2. He can instead choose not to wait and “go car seat” where he is. Given his level one autism he might start to get the concepts of “car seat” and “potty” mixed up if you call it “going potty” in situations like this so you might want to use a different term like “go (or going) car seat” in those instances.
If he opts for option two it’s technically an on-purpose rather than an accident but it’s not actually misbehavior because he would be doing it with permission.
If Simon opts for the second option in this hypothetical whether he can technically wait or not (only he knows for sure in this instance) there are two options for what to do after you get home.
1. You could hand Simon a bath towel and have him assist with the car seat cleanup. In normal circumstances (especially before I knew about Simon’s PDA) I would suggest a natural consequence such as this one but no punishments (including timeouts).
Or
2. You can (in this particular instance) handle the entire car seat cleanup yourself, give no punishments, get him cleaned up and gently (in a non-demanding way) request a couple hours later that he use the toilet so that he gets used to using the toilet again as soon as possible. Also later on you reduce the frequency of events like this hypothetical by (somehow) gently changing the schedule to include more bathroom breaks when you are doing errands, going on picnics (and the like), etc.
Given the circumstances of this hypothetical and Simon’s PDA which options would be best in the scenario above?
Perhaps help Simon clean up his mess in a supportive way but then in the future, request for him to go to the bathroom before or when a bathroom is available💕💕
@@7Aheadfamily Like maybe you could start the cleanup of a small area with a wash cloth and then he could use a colored (e.g. dark blue, dark green, or black) bath towel that doesn’t stain easily to clean the rest.
Also I read recently that cloth diapers can also be useful for cleaning such messes because they are often made of microfiber these days and they are very absorbent.
By the way Target still sells Gerber cloth diapers near the disposables. They are technically smaller than Ezra and Simon’s sizes but given enough of them there are several methods to make them work.
For example, when it comes to Ezra’s training you might try a variation of the “underwear in the diaper without taping it in place” technique that my mother used with me when I was five-and-a-half years old in preschool back in the early 80s. In this instance the cloth diapers can be folded and placed inside Ezra’s underwear in whatever quantity is needed and then a pair of plastic pants could go over the top of the underwear. This should allow Ezra’s clothes to be protected if he “goes” on long car rides, at picnics, in church, etc. while still feeling the wetness if he “goes”.
One area where cloth is actually potentially worse than disposable when it comes to training is that due to evaporative cooling it becomes noticeably colder versus most disposables. From what I have read from people online who remember wearing cloth before disposables became popular they would sometimes decide to rewet them in order to warm them up again if they become too uncomfortable. This is just one of several reasons why regular changes are important with cloth diapers.
Still occasional use of cloth diapers can help with building an understanding of the connection between wetting and feeling wet while providing protection of one’s clothing (at least in theory). I did not wear cloth when I was young but the pampers of the early 1980s (pre-1986) functioned more like a cloth diaper than most of today’s disposable products so I can see how that might work.
Good plan!💕
Thats what I have. Aspergers and pda. For me when I am calm, my pda really isnt too bad, but if i have had an upset during the day, its bad. For example I feel very hot and cross and the space of a very short period of time and then I sometimes shout or throw stuff.
Thank you for watching and sharing❤
I was wondering whether you think that Simon’s wetting accident in his car seat during that shopping trip last September was caused in some way by his PDA or whether he was confused and opted to “let go” because he was getting uncomfortable and thought that he had a diaper on. It could have been the second one because diapers and underpants can sometimes feel very similar. I would sometimes make that mistake myself (back in the late 1970s and early 1980s) when I was around the age that Simon was on that shopping trip up until at least age five-and-a half when I was in preschool. This kind of mistake would be pretty likely (even without PDA) if you were switching Simon back and forth between underpants and diapers at that point in time.
Incidentally the colored underwear suggestion that I gave in some earlier comments is most useful when a child can look down and actually see the underwear and verify by appearance that it is not a diaper. This is most useful while playing in a play room or perhaps a back yard during potty training. My mother often had me play around the house (or in the back yard when weather permitted) in just my underwear (sometimes with socks on as well) while I was training so I could look down and see what I was wearing before deciding whether or not to “let go” on a specific occasion.
When Simon was in his car seat that time
he likely could not look down and see whether he was wearing regular underwear (preferably colored underwear) or a diaper of some kind. He would only know if he remembered in the moment what was put on earlier that day and if he was too tired or stressed out that might have caused him to not remember this correctly and perhaps make a mistake as a result.
Which one of these two possibilities seems more likely in that particular situation?
I’ll have to ask him when he’s older and see if he remembers. 😊 I would guess tired or stressed
I'm an autistic adult with PDA. It's a panic response for me.
Thank you for sharing❤
Asking questions can be a good idea but some questions can be confusing.
For example if a child is having a wetting accident (or any kind) and a parent asks a child who is either on the spectrum or early in the training process a question along the lines of “Is someone going pee-pee (or poo-poo)?” he or she might find it confusing like I did when I growing up.
True ❤️
In my neighborhood there is a kid with level two autism who is still struggling a bit with potty training. Apparently the potty watch and timers have helped him a bit but potty charts have absolutely no effect. As far as I know he has not been diagnosed with PDA so I don’t know if it’s a PDA thing or a level two thing.
When I was growing up my parents did not use a potty chart with me so I don’t know if I would have trained more quickly with one or not. This was back in the 1970s and 1980s and I think people started using potty charts mostly in the 1990s to 2000s.
Interesting, yeah, not quite sure.
I did some recent searches on Microsoft copilot (as well as google) and I had the AI compare and contrast Level 1 Autism with no intellectual delay in combination with PDA, and Level 2 autism (without specifying any level of intellectual delay) and I noticed that the comparisons including the amount and type of sensory sensitivities, and when various developmental milestones are reached (on average) lines up fairly closely. I wonder if maybe one reason that I don’t hear about level two as much is that some kids (for reason or another) who are level two are misdiagnosed with level 1 in combination with PDA.
At the beginning is so cute how simon was helping ezra
Their buddies❤😊❤
You already did a video about Potty Training as it relates to autism. Maybe you can also do a video about potty training as it relates to PDA.
This morning I just asked Microsoft Copilot (with GPT-4 turned off) the question:
At what age do children with PDA finish toilet training?
The closest it came to answering this was in its final two lines of output before an ad for Pull-Ups and listing 7 sources.
It said:
“Remember, each child is unique, and the timeline for toilet training varies. Some children with PDA may take longer, but patience and understanding go a long way.”
Above that it listed behaviors seen in children with PDA when they are nervous about toileting such as hiding, crying (as Simon can be seen doing during the regression section of the potty training video about autism), and verbal withdrawal. This makes me wonder if Simon (who has PDA) ever hid before “going” (like Ezra sometimes either does or did) at any point during the toilet training process. If Simon ever hid did he have a favorite hiding place (for taking care of potty breaks, as it were) like Ezra before he started using the toilet consistently?
I also wonder how long ago you learned that Simon has PDA. For example did you know that Simon has PDA either before or during his daytime potty training? I don’t remember hearing about that.
After listing hiding, crying, or verbal withdrawal Microsoft Copilot listed the following eight tips for navigating the toilet training process with a child who has PDA. I won’t list the complete text here, just the parts in bold (the eight numbered suggestions) as follows:
1.Stay Calm
2. Break it Down
3. Choose Battles Wisely
4. Empower with options
5. Be creative
6. Patience and Positivity
7. Never Force
8. Comfort Matters
This was followed in the Microsoft Copilot output by an ad for (in this instance) size 2T-3T pull-ups.
Now that I have listed the main points enumerated by Microsoft Copilot I will expand on them with my own observations as follows:
I don’t know if I have PDA (since back in the 1970s, 1980s, and 1990s they were not testing for it yet). Even though I was still level two back then (I’m currently level one) I probably would have been diagnosed with this as well if they had that diagnosis back then.
Regarding Staying Calm:
A good example of this is from the time that Simon had a doctor’s visit about a week after he started preschool to have the braces on his feet looked at. When you asked him “Oh, did you go poo-poo?” and later said to him something like “That’s not a jungle gym.” these would be examples of pointing out and gently correcting behaviors with a combination of understanding and humor.
Break it down:
This involves having a set of manageable steps for the child to follow when it comes to toileting. Your autism potty training video already goes into some detail about this but if you eventually do a future video about potty training as it specifically relates to PDA you might decide to expand on this.
Choose Battles Wisely:
My mother did this with me sometimes. Sometimes when I was potty training if I was very anxious/stressed out and resisting a lot more than I usually did she would take me off of the potty chair or toilet and leave my diaper off and put me in regular underwear and regular clothes that would be dark colored and fairly easy to clean. Then she would get me some snacks for later and take me on a walk around the neighborhood. If I showed signs of having to “go” during the walk such as doing a potty dance or perhaps bending my knees or squatting she would have me sit on her lap and try to go there in order to work on the mechanics of it. If we were bowel training she would also have me push my feet against a large rock, a tree stump, or even her hands. If I managed to “go” she would give me some juice and/or a snack as a reward. After I got home any clothes that I managed to “use” (with her permission and/or gentle encouragement) would go into the wash and her clothes would also be washed. She actually gave me some verbal praise in this situation a good percentage of the time but she kept it mild and lowered her volume (almost like how Fluttershy usually talks on My Little Pony) to keep from overwhelming me too much.
If I managed to “go” in a more preferred location (such as a toilet) I would be given one of my favorite rewards such as a small amount of ice cream or a small lollipop. In the neighborhood walk scenario I would be given a different snack that would be my second, third, or fourth favorite snack instead. On shopping trips the approach would be similar but I would be sitting in a shopping cart with regular clothes and no diaper but some folded bath towels, a beach towel, or even an old sweatshirt instead with something like an old crib liner under that.
This approach also ties in with Empowering with options and being creative.
Regarding Patience and Positivity:
The Microsoft Copilot suggestion on this about being understanding and celebrating small victories would apply here.
For example if Marie had managed to get Simon to do anything (#1 or #2) on the toilet after the car seat wetting during the Dollar Tree shopping trip any such victory would be celebrated. Likewise when Simon said “Oh no, Potty!” either before or (more likely) during the car seat wetting he would in all likelihood be gently praised or gently rewarded for telling his mother about what was happening.
Any such reward would be noticeably smaller than the reward for making it to the toilet so that he would understand that given the choice the toilet should be the primary place to “go potty” not the car seat. That being said on the subject of choosing one’s battles, empowering with options, and being creative it would probably be fine to allow for some very rare car seat usage(for either #1 or #2 (either with or without a diaper or other “backup” (in elimination communication (EC)) terms)) instead of making him wait in certain exceptional situations such as traffic jams or other rare circumstances where a toilet may not be readily available.
Regarding “Never Forcing” it looks like you made the right call having Simon sit on your lap and finish his smoothie (or whatever it was) after his first day of preschool even if you happened to notice him pushing/bearing down (a concept that Andrea Olson describes in some of her EC (Elimination Communication) blogs and videos). Taking him to the toilet at that point to finish up would have likely been too stressful for him and due to his PDA it likely would not have helped him to train any faster than he did during the day.
In fact, when you asked him afterward(very gently in my opinion) “Did you?” and he answered the question he seemed to be scared even though (as far as I know) he has never been punished in any way for anything like that. I’m guessing that this is a combination of his level one autism and his PDA at work (what percentage of each went into that in this instance I am not sure of (Maybe you have some ideas on that)).
Regarding “Comfort Matters” a toilet seat that is sufficiently soft and warm can help during the training process. My parents did not have that when I was younger but my mother did help me to be comfortable while learning to use the big toilet by having me sit on her lap (first with diaper , and then after getting used to that for a bit, later without one) while using the big toilet initially. Before that I used a potty chair. For me this potty chair to big toilet transition was some time after my fourth birthday (I think I might have been as old as four years and three months by then.). Simon took less time than this to learn how to use the big toilet (He was up to six months younger than I was when he learned how to do that.) so maybe it’s an example of the difference between level one (like Simon) and level two (like me at that age) whether I happen to have PDA or not.
Thank you for sharing!💜💜💜 And thank you for sharing your video idea!💙💙💙
Now that I know that Simon has PDA I have to wonder when he was younger and he was talking to his toys and not using words to communicate with people whether it was his level one autism, his PDA or both that were causing this.
If it was both how much of a factor do you think each one was in this?
Last year around this time before Simon started preschool I was wondering if he also had apraxia of speech like Ezra because at times their symptoms sometimes looked similar if Ezra was wide awake and Simon was tired and/or stressed out but it looks like their conditions are more different than I originally thought even though they are both on the spectrum.
Now I’m hoping that Ezra learns to control the muscles in his mouth well enough to say “hi”, “bye”, and some other words that he can eventually use to communicate some of his needs like “food”, “water”, “juice”,”hungry”, “thirsty”, “tired”, “bath”, and “bed”. Yes and no would also be good words for him to learn eventually along with some other functional words.
I remember from The Miracle Worker (I read it Freshman Year in High School in the 1990s) that “water” was Helen Keller’s first word. Maybe Ezra can learn this word soon. If he does it will be a good start in the journey toward eventually becoming verbal. It will take a while but if Broca’s area, Wernicke’s area and his motor cortex are working he should eventually get there (especially since he usually seems to understand what’s going on around him pretty well, most noticeably in videos since about January or February of this year).
Great thoughts, thank you!
My father thinks that giving choices is almost always a mistake because the child will walk all over the parent(s) if this is done.
For example if a child is given the choice of using the potty chair or toilet or going in his or her car seat he is of the opinion that most (if not all) children will opt to go in their car seat until at least the age of four or five.
Thanks for sharing ❤️
Yeah, as apparently you really have to know your kids and what is most helpful for them.
For me, when my PDA gets triggered I feel heavy, dull, theres an uncomfortable feeling in my head and I feel anger in my head an chest.
Thank you so much for sharing. ❤️
Oh that is what that is, that explains a lot
So glad!
Do you think you have it. 😊
I love Simon’s backpack. Where did you guys gets it? I know my little guy would love it too. 😊
I'm sorry I don't have a direct link, since that doggy backpack was a gift and we can't seem to find it online, but here is a link to some other doggy backpacks. amzn.to/3LMiS2I
for me this is realy relateable but i dont think i have pda and if i do its verry mild but its probly just asd
Thanks for sharing. :)
Appreciate you watching and commenting.
@@7Aheadfamily ive also shared to some people ik that have childeran with pda and they liked it ;)
Thank you so much for sharing!
We appreciate that. 😊
During sports day we are required to sit down unless we are going to an event i know its because of safety reasons but they would constantly repeat it over and over again i was fine sitting down on my own but once they said it over the announcement i would stand up until a teacher came up tue me directly and told me to sit down because i don't like to get in trouble but by the end when the staff did a relay race i get too exited seeing teachers i know racing and start jumping and moving this year was slightly different as well because we had a little dance as the year nines were finishing their races and i was stimming like crazy running at the back of the area we were allowed to be in racing my friends because that's what they wanted as well and i could not sit down i had a lot of energy at that point the only other time i sat down when we were told was when i was in the tiny bit of shade with the 100 other students in the area i still got burned because i don't like wearing sunscreen an when someone tells me to i don't want to but I'll put it on myself when i want to do it.
That sounds like quite the day. Thank you so much for sharing. ❤️
I love the format of videos
Glad you enjoy it!
Have you ever heard of This TV Show Called Supernanny? Oh and have you ever watched The Show Before?
Yes! We have 😄
How does PDA and SM work together?
Hi by the way , what days and time do you normally upload if you have a schedule
Great question!❤❤❤ Normally we post on Saturdays around 9 Mountain Daylight Time😊
In my experience I've always hated being praised for things I was told to do. It feels wrong, upsetting and frustrating. When someone demands I do something I feel trapped, and I freeze. Even if it's something I love to do! So I might want to play guitar, then my parents say "You should play guitar, you haven't in a while" and that will make me feel upset and I won't be able to do it because I feel like I'm not in control of the situation.
I also have issues being consistent with things, because as soon as something becomes an expectation, I get incredibly overwhelmed and hate doing it. I've had many hobbies I dropped because people started expecting me to engage in those hobbies.
Usually what helps me is choices. So for example if rather than being told "Shower" I'm told "You can shower before or after dinner, what would you prefer?" I'll be able to choose and it will work. Unless then I am told "You have to shower now" when the moment comes, since that defeats the whole purpose.
My therapist didn't diagnose PDA, but she said it in much less flattering terms saying I want everything under control and only do what I choose to do.
Also I was wrong guessing it was Ezra! I would have actually never thought it was Simon. I even thought it was Benson before thinking Simon!
Thank you for sharing your story!❤❤❤
@@7Aheadfamily You're welcome! I enjoy commenting and talking about it. It feels helpful to me, and maybe others too
We love hearing about it!❤❤
@@7Aheadfamily I'm glad!
😊😊😊
Simon and Ezra was so cute when simon was asking Ezra to point to numbers ❤️🩵0:17
It was very cute!❤❤
I have to fight my urge to try to refuse to do anything that people tell me what to do the only reason I tolerate it for my job is well money 💰 of course but rather than that good luck trying to tell me what to do
I 100 % hate being control by anyone but yes I do tell my nieces and nephew what to do because I want them to listen to their parents
🤣🤣🤣
Do you think you may have PDA then?
One of the ways people get me to do something is to get me something like soda or ice cream or food by the way I'm a 28 year old man
Nice! Yeah, that’s helpful. 😊
I don’t like the name pda either. It’s more of just an extreme need for autonomy. It cannot be changed or worked through. It’s an instant anxiety driven reaction of fight flight or freeze when anyone (even yourself) places a spoken or unspoken demand on you.
Edited to add: PDA is very often misdiagnosed as oppositional defiance disorder.
Thank you for sharing! ❤️
This gave me a lot of advice thank you❤
Thanks for watching and commenting!
Was PDA a new topic for you?
@@7Aheadfamily yeah it was indeed
You should do more of these themes of videos
@@7Aheadfamily your welcome
I dont know whethever i had PDA becsuse bsck in my day as only child at home mevother diblings were adults libing away it was a bit like an only child i was spoilt rotton.
I fo know thst at nursery if a fladh card was hrld up i was one of very bright ones ejo knew words but eouldnt put hsnd up snd say them while other kid's were present how much of this was pda, how much autism, how much school anxity and shyness we font know.
But ive a feeling i was like thtough all of school and college yo a lesser degree difnt really like group discussions even at college.
Even in my forties fidnt like mock job interviews etc i just felt overwhelming pressure and paronia became a big thing in last seven years
Thank you for sharing your story!💕💕
I'm 10 and i relate to it all ?????
Thank you for sharing, if you have any question feel free to ask them as a reply to this comment❤❤
That’s my kid alright!
Thank you for sharing💕
But who has it?
Simon
How do I get my 5yr old diagnosed. The only thing we got is that he is neurodivergent
It's important to start by consulting a pediatrician or a child psychologist who specializes in neurodevelopmental disorders. They can guide you through the assessment process and help you get the right support for your child.❤
7 Ahead - Do you believe I may have & Be Diagnosed With PDA , Autism Or Both ?
That is a good question. I really don’t know the answer to that. I wish I did. What do you think?
@@7Aheadfamily Most likely Autism my sister even said she always thought I was on the spectrum than having ADHD which that test I took in Feb 2020 & they said I didn't have ADHD
Thank you for sharing💕
Thanks for sharing.
😊😊😊
If you don't like the name you could call it "Pervasive Drive for Autonomy" instead. Some people in the autistic community use it. I don't have PDA but I've always struggled with perfectionism and anxiety.
Good idea!❤
I have also seen the term pervasive (or persistent, perhaps) drive (or desire, perhaps) for autonomy on Reddit and some other sites as recently as yesterday.
As far as I know I don’t have PDA, but then again who knows? I have never been tested for it.
I might have it. I’m usually a bit of a perfectionist and I sometimes have anxiety in connection with this.
Thank you for sharing!💕💕
Thanks a lot
Most welcome!❤❤
Huh interesting 🤔 I learn more new terms on the daily and yet somehow I feel many of the things described sounds like what was just a normal part of growing up in a 90s type childhood 🙃 😅 for me lol they have all new names and labels why can't we still help kids while letting them be kids is my opinion on it these kids are gonna grow up with these terms thinking theres something wrong with their way of being human when theres actually not and to me thats the part I don't understand it just seems to me to be more detrimental and not actually helpful at all 😅
This is extremely helpful. For example, if a child does not have PDA then your reaction and your response is Parent will be quite different than compared to a child with PDA. PDA means that anxiety comes from the expectation. Most kids do not have anxiety when they have an expectation put on them. A Diagnosis makes a huge difference to help the parent know how to better support the child
I love your content and can you please do a day in life
And know more about PDA
For Sure! Have you seen these ones?
A Day in the Life of Mild Autism and Severe Autism. ua-cam.com/video/RykVSG2TNPY/v-deo.html
Day in the Life | Severe Autism & Mild Autism. ua-cam.com/video/x6a1opNCpe0/v-deo.html
A Day in the Life of Mild Autism and Severe Autism Traveling. ua-cam.com/video/HQJ_RSGtDyQ/v-deo.html
i dont like being praised
It’s the same for me. When people praise me it doesn’t always feel real and that sometimes makes me feel nervous.
@thomasschoeck9080 for me I don't get nervous I just hate it like whenever I survive I'm school back when I was in mainstream I would get praised my mum told me I think yesterday my grandpa doesn't like being praised either
@ For me nervousness is one aspect of it. Another is if I was praised for something fairly minor it would feel phony/condescending. For example, if I was praised for making the honor roll that felt real. On the other hand if I was praised for washing and drying my hands before eating that felt phony. Both of these examples were from when I was in High School. By that time I was washing and drying my hands for around a decade (rounded to the nearest decade).
I don’t actually know if I have PDA or not. I have never been diagnosed with that but most of the signs in this video fit and when I listed them off in a recent phone call with my parents they indicated that they fit me better than I know. I should say, though, that some of my symptoms can also be attributed to being on the autism spectrum (I’m currently level one but I was level two during childhood.) and the effect of complications of a premature birth (in my case this included a small right hemisphere stoke around the time of birth.) I am already officially diagnosed with autism and what they call right hemisphere syndrome (My right hemisphere syndrome was caused by the stroke around the time of my birth.)
It is interesting for me to think about whether I might also have PDA (since it gives me some insight into why I might do some of the things that I do) but at my current age (late 40s) there would probably currently be no reason for me to get that diagnosis in addition.
Under 1 hour
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First!
Well done!
Great job 👏
❤️❤️❤️
hi😁
Hello 👋
From what I remember PDA is much more like an anxiety disorder than what its name would imply.
I have been visualizing it in terms of various My Little Pony characters (in terms of their personalities and some of their struggles) and a literal interpretation of the name of the condition (which again they should change as soon as they can) conjures up mental images of Cozy Glow and Lightning Dust.
A more accurate description/depiction of PDA that shows that it is more akin to an anxiety disorder (such as Social Anxiety) shows that a more accurate MLP-based mental image can be pictured in terms of Twilight Sparkle (especially in Seasons 1 and 2), Rainbow Dash (especially in the episodes Sonic Rainboom, and Testing Testing 123), and Fluttershy (especially in the episodes Hurricane Fluttershy, and Luna Eclipsed).
There are probably other fictional (e.g. MLP-based examples) that would also be reminiscent of PDA (whether the MLP writers for the Friendship is Magic series have heard of PDA or not).
Good insight💜 Thank you for sharing!❤❤
Is it just me or does Simon speak pretty much like a "normal" 4-year-old?
He is getting there for sure. :)
He has been in school or therapy from 9:00-7:00 every day now for a long time, and he is improving quickly. :)
His vocabulary seems to still be a bit behind but not as much as it was. For example, at the time of that Dollar Tree shopping trip last September Simon’s speech seemed to be one or even two years behind (at least in terms of more social words like “uh-oh” and “oh no”) but now the delay seems to be a bit more subtle. Maybe it’s six to nine month delay now.
So it's like 80-85% in the end?
❤️❤️❤️
Fish 🐠
Thank you for watching!❤❤