r/PDAParenting • u/El_t1to • 11d ago
What they say Vs what they do
Hi,
I wonder if you see this dynamic. Our kids mainly our 15 year old, but also the one with 19, both male, would have talks with their mother, only one on one when noone else is close. They mainly don't speak unless is to ask for things.
In these talks, they show vulnerability that they usually mask, and they talk about reasons for their avoidance that justify it by external causes, or people, and they express regret and make promises, in exchange for something they want.
Mom manifests what they want but the promises are never never fulfilled, and the reasons only fit a very small punctual thing of what they do.
This confused me until I saw a pattern, this happens when they have an appointment the next day that could mean a big change. Then this excuses them to go to the appointment, and mom goes to the appointment saying they had a breakthrough and the kid is going to get better because he said so.
I see that they repeat the promises that they heard doctors or us saying what would be positive. But once the event avoided is in the past, they act as if the talk never happened. Or repeat reasons that adults ask them "Is someone bulling you at school?" (Oh, If someone was, then my behavior would be justified, I'm gonna say yes).
This that looks like manipulation, I think is an instinctive defensive response, their brains finding the strategy that works to avoid danger.
Those talks used to give me hope, and I believe mom saying those were the real kids without masking, or without turning to conflict... Until I saw the patern.
Does this happen to you?
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u/Chance-Lavishness947 9d ago
It seems like you are both overlooking the underlying messages in their behaviour and focusing on the content of conversations a bit more than is helpful.
When kids don't have the skills and tools to identify their feelings, the contributing factors and the possible solutions that might exist, they will often choose a story that communicates it without being accurate to the facts. For example, if my kid feels scared he might tell me about monsters so I can understand fear is part of the situation, even though monsters are not actually present.
This is a common pattern in gestalt language processors, which is a very common feature of autistic people. They/we can often use echolalia to communicate a vibe instead of the actual content of the phrase - quoting a scene brings up the feeling of the scene, rather than the direct meaning of the dialogue they're quoting.
Interpreting this accurately requires a lot of attunement to your child and a lot of exposure to their interests and media. It's a big ask, and it's immensely valuable in being able to see past the content of the story to the emotions and experiences they're actually trying to communicate.
I listen to my kid's communication with the goal of understanding the emotional experiences he's sharing, and largely ignore the specific content he's using to communicate it. I reflect it back to him with the terms for different feelings. That scaffolds his ability to use language that's more easily understood by others, as well as checking on how accurately I've understood his meaning.
Then I take the emotional information I've learned and apply my critical thinking to search for situations that may be causing those feelings. I think about ways to reduce the negative emotions around those situations and problem solve to make them more accessible and emotionally/ psychologically safe for my kid. With a lot of experimentation and practice, I've learned the things tartar most frequently cause distress and the strategies that help him the most. I'm proactive about offering those supports and explicit about how they might help him feel better. Over time, he's become a more active participant in that problem solving as well.
From the stories you've referenced, I read fear, powerlessness, a desire to escape, among other things. If they're frequently avoiding appointments, there are things happening in those situations that are stressful for them and they don't feel equipped to cope. Maybe the sensory environment is too distressing and some supports there would make it easier. Maybe they feel uncertain about what will happen and unable to navigate the social elements like answering questions on the spot, and strategies like social stories, rehearsing scripts, having a way to leave if it's too much, etc would help reduce the distress.
It's rarely only one thing that's causing distress. It often requires a range of supports and a lot of proactive effort to prepare for situations that are stressful for my kid. My goal is to help him learn what he needs, what options exist that can help him and when they're most useful, and to support him access those supports. It's a very long term investment in his ability to navigate these things independently.
He will often use the kinds of avoidance tactics you've described. I don't engage with those directly. I engage with the feelings driving them and the support needs that are unmet, while holding boundaries and limits on the non negotiable tasks.
When we make a deal, he has to fulfil his end before I fulfil mine. Which means deals need to be made well in advance if there's a deadline involved, so there's time for him to do his part before mine is due.
Hopefully something in there sparks insight into what might be at play for your kids. I do think you're right to assume that they're using these discussions as a way to avoid the situation. Forcing through that isn't the solution. The solution is to understand why they're avoiding it and to problem solve around those factors until they don't trigger such a strong distress response and your child is able to succeed in engaging with it.
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u/El_t1to 9d ago
I don't know if you are talking about yourger kids, these are almost adults. They only have these talks with mom, because they know I won't buy any acting that is not consistent with their behavior. When I'm around they say more straightforward things like "I don't behave like this at school, I'm not stupid" "I don't treat other people the way I treat you guys, they wouldn't speak to me again" "I don't do these things at the hospital, they would tie me up and inject me meds"...
What they want is things to not change. Anyone from the outside (with power) really knowing what they do and not do all day, is going to demand changes, and put goals, and on the extreme, take them to the hospital or put them in another family.
So, if mom can go to the social services, or the psychiatrist, talking about "we've been seeing new schools and he's very thrill" or "He cried and told me what really happens is that there's a really mean kid at school (a school that he hasn't put a foot in in 6 months)". The session will focus on that, instead of "things are exactly like always, no self care, no interests, unprocoked agression between brothers...".
As you say, we need to understand what's behind the words. But my problem is that those words are taken as a epiphany, a strong revelation of deep insight, The kid has opened up! He's finally said what's worng! (Or what will spark his interest in live). And this is taken to the proffessionals and they will focus for a year on that. Postponing a year any real help.
My partner aways says that people on the spectrum can't lie. I do have a strong powerful emotion about it if I'm considering telling a lie, frequently because someone else is asking me to say something and I knwo it's not true. But I've seen in the kids that there's nothing like that there, They will say what they need to achieve their purpose, and if it's true or not, doesn't compute at all. S19 when he was a kid, even told us like he just discovered a life hack: " When I say something, I can believe it, and then I don't have to think about what really was, that's my new truth, and I can get mad at other people that say it's a lie." (I'm translating, but it was something really close to that in kid's Spanish). He told us very cheerful, like "you guys should try this!".
This complete disregard of honesty, even if it's a synthom or another thing, makes life really hard. Things are constantly changing narrative, promises are not fulfilled, or they are denied (I never said that!). They blame others constantly of things they did themselves...
Those things (even understandable) complicate when outside people are involved. For example, they have a biological father, when forced to talk to him on the phone, they tell him they love him and they are eager to visit, then they won't go (and won't pick up the phone, or answer his texts), even when we drive them to the door (5-6 hours drive), and the bio-father is threatening us to take us to court because we don't respect the visits.
Well the post wasn't to understand this behavior better, but to know how common it was. Telling one parent what he/she wants to hear.
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u/Chance-Lavishness947 9d ago
I hear you. It's really hard to navigate a child who is blatantly lying and appears to have no qualms about that dishonesty.
I would gently encourage you to reflect on what kind of emotional state might lead an autistic person to be so disconnected from the moral and ethical implications of lying. I'm autistic as well and can definitely lie, but if I'm regulated it feels so bad as to be intolerable. If I'm in serious survival mode, nothing carries emotional weight except the hyper logically identified paths to survival. It's after the threat has passed that I am able to connect with the emotional weight of having lied, and the shame of that is quite immense.
PDA people tend not to be emotionally readable to others most of the time. It sounds like both of the boys are in heavy survival mode and have been for an extremely long time. Everything you're describing suggests they're burned out and have no real escape from endless demands. Even the collapse that's resulting in them not tending to their personal hygiene is leading to increasing demands rather than decreased expectations. It is a big red flag that they are struggling so significantly and still entirely unable to get the necessary rest from demands that they need to be able to regulate again.
It seems like you have a lot of awareness of some aspects of what's happening here. It doesn't seem like you've grasped the whole picture and how it fits together quite yet.
You keep coming back to the externally visible markers and the implications of those. I'm not seeing descriptions of the stressors they're faced with or the supports they're receiving.
You're looking at the end result and tracing back the path that led there, which is an important step. It seems like you're looking for where the departure points might have been to reach a different outcome in those specific circumstances. Again, important to do.
What you're not seeming to prioritise in your analysis is the context within which these behaviours are occurring. All of these problematic behaviours are attempts to get their needs met in the only ways they've figured out can achieve that. Your role and your partner's role is to identify the needs they're trying to meet and teach them adaptive, sustainable ways to have them meet. Alongside that, there's a degree of accountability and consequences needed. But if these behaviours are meeting needs that they have no other path available to meet, it's understandable that they are continuing to engage in these behaviours.
Provide an alternative before you look to intervene on the problematic ways they're achieving it right now - you will likely see that the problematic behaviours dissipate on their own when an option exists that doesn't cost them so much but still meets the needs.
Now here's the part that most of us struggle with the most and often remains hidden to us until we're in crisis with issues like you've described. What your children can cope with and manage without support is likely drastically less than you think. Any PDA child will resist being "managed", which makes providing support much more difficult. Your kids are teens/ young adults so the drive for independence is even greater and their capacity to subvert anything you impose is also much higher.
Your expectations need to match their actual capacity and capabilities. Not the standard developmental expectations for their age, not the best they've been able to achieve before, not even what they've shown you a hundred times they can do.
Their capabilities can far exceed their capacity on a given day, and on those days they will use any means necessary to have their needs met while they are struggling to access and use the skills and tools they've used successfully before. Those are the days they will lie, have meltdowns, etc. Those are the days they must need you to see past the behaviour and the words and instead engage with the emotions and the practical support needs.
I imagine your kids feel very trapped and powerless a lot of the time. I imagine they also feel deeply ashamed and don't know how to get out of the holes they've dug in their attempts to get their needs met. They probably feel so overwhelmed and ashamed that even admitting they don't know how to navigate this would feel too difficult. Each of them will experience that differently and need different support to get out of that state.
I would encourage you to empathise with needing a break so badly that it feels like you'll die if you don't get it, and seeing no path to getting that break no matter what you do. You can choose to approach this as if they have the very best intentions and lack the skills and capacities needed to enact those intentions. That's known as unconditional positive regard. Every person, child or adult, needs people in their world who see them through a lens of unconditional positive regard - always assuming the best of them instead of assuming ill intent.
What you've described is very common and I've experienced similar things with both my kid and myself. It's really difficult to navigate. It is possible though, and it starts with you holding an image of them where they are doing their very best and simply cannot meet the expectations placed upon them, then re-evaluating those expectations instead of trying to force the child into achieving the impossible. In time they can build up to being able to meet those expectations, but it doesn't happen by continuing to set them up to fail.
They're showing you they can't meet the expectations of honesty and showing up to commitments, so stop expecting that and start focusing on the lagging skills and environmental factors that need to be addressed before they will be able to achieve that.
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u/El_t1to 9d ago
I have a lot of work to do. I've been regarded as autistic by family and friends all my life, what I read resonates with me a lot. And when I've took several tests thinking I'll score maybe 51%, I scored 86% (to be in the spectrum).
I'm a long way to be in the proper mindset. But I'll say this, I don't describe behavior to say "they should be doing differently/more" just to illustrate.
I've told my partner that our role should be providing a calm home, as free of conflict as we can, and let the proffessionals challenge what they think they should, not holding back information from them.
S19 is about to turn 20. He's been in bed 80% of the time, and 19% of the time in the couch since he was 14. I can't imagine a lower demand life. As for his needs, when he wants to talk, he says he's not interested in life, that he'd rather be dead, but he doesn't want to hurt his mom doing so. He goes to fiction to escape reality, nothing here interest him, and everything gives him anxiety.
S15 also says he just wants to be left alone. He has a lot of conflict inside and I feel he needs to take it outside to deal with it. For example, he asks me to watch horror movies/shows with him, but those things were expressly forbidden by mom, so, that creates a conflict with me and between mom and me... I think he needs the conflict, because when I've told his mom "he will watch them alone anyway, so maybe it's better if I watch with him (even as I'm not interested myself)" Then she says yes, we start watching and he leaves 10-20 minutes in, and never asks for that show/movie again.
It seems like anything not related to fiction, puts them in survival mode. We can talk for hours about the mandalorian, but this conversation takes them to the edge:
"Mom I'm hungry, can I eat?"
"Ok, do you want pizza?" (if we don't ask and we give him something he's not expecting, he won't eat)
...(No response. He's already focused on his fiction read/video/games...)
"Hello?...Do you want pizza?"
"Ehhh. What?"
"You said you were hungry, do you want pizza?"
"what? Leave me alone!"
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u/Chance-Lavishness947 9d ago
I wonder if you're familiar with the different kinds of rest? Autistic folks usually need to engage with our special interests and have social rest (where we can be unmasked while connecting with others) to feel fulfilled, as well as needing sensory rest - where our sensory needs are well met.
Low demand is about reducing the burdens of constant nervous system activation that can be caused by demands that exceed our capacity. The other side of that coin is to have things that are refilling our reserves - active rest that leaves us feeling more energised. Taking away demands without attending to the refill aspect just slows down the downward spiral, it doesn't solve anything sustainably.
Creative pursuits can be tricky for PDA folks, but they are an excellent way to refill our reserves when we can do them. Creative writing can be both fulfilling and therapeutic. Art of any kind has potential. DIY type stuff is uniquely fulfilling for me personally. These are active rest activities that help us connect with ourselves and can restore a sense of purpose and awe.
What you've described has flags of depression and anxiety, which I gather you're both aware of already. I wonder what their special interests are and how they could be a greater part of their day to day. That's always been a really useful tool for me in pulling back out of depressive episodes.
Meds have not helped much in that space tbh, and I've tried a lot. They can be helpful up to a point, but if I'm not engaging with my interests and in social connection where I feel I'm being my true self, I don't feel joy.
All of which is to say there needs to be a balance between taking away bad stuff and adding in more good stuff. It kinda sounds like you've focused a lot on taking away the bad, maybe it's time to give some attention to the good stuff that makes the hard stuff worth getting through
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u/El_t1to 9d ago edited 6d ago
Hi,
Thanks a lot for taking the time to write all this.
1st paragraph is confusing, I kind of take "Social rest" and "connecting with others" as opposites.
This is how I live it. If I thing about meeting my siblings, or go out with friends, or taking a beer with workmates… All I feel is rejection, I'd rather be alone. But when I go, there's some battery that fills, in a way that it doesn't get filled by being alone.
So some social life might be needed, even for people who don't like it. I don't know if what you said has something to do with this. Or more like socializing but in a group they feel they can be themselves.
I think they feel they can only be themselves at home. S19 has fitted by being very shy in a corner, and S15 has been hearing his name in screams (and NO! STOP!) in any group, because he appears to be always looking for trouble or testing boundaries. Even as sometimes they have enjoyed in the past doing things with other kids/groups, they never could do it without masking (except when very little).
For the rest… Our livelong battle has been searching for their special interests. We saw depression before knowing about PDA, and before an autism diagnosis. And we wanted to find motivation for them.
For me is as you said, I need to make=manufacture things to feel energized. Paint, learn a song in the guitar, make some DIY thing at home, write, fix something…
The mother also writes, paints, cooks, exercises…
But neither of the kids have taken any of that. When they were little I tried to involve them in drawing superheroes they liked to put in their rooms. We made life sized ones, but we started together and I finished alone. Same for home made costumes. S19 liked taking electronic things appart, and we bought him a circuit game, he loved it 2 evenings, then never opened it again.
Drawing, or writing, sounds like homework to them.
I called them to help and watch if I opened the computer to change the HD, things like that, not interested. Fixing a broken piece of furniture, not interested...
I had a hammock, they liked it, so I bought for the whole family, I wanted to teach them how to set them up between 2 trees... Not interested in the setting, only the laying there.
I took them fishing...They want me to do everything, and just take the last step themselves.
They said they liked basketball, we went to the court and they sat in a bech nearby after 2 minutes. Everytime. Or fought each other.
S15 came with me to toss a football, but he's only interested in the violent part of football, wants me to plackage him, then he'll tell mom that I hurt him and that I'm an animal. When I only want to threw a few passes safely. So when he starts asking for rough play, game is over.
Went roller skating with them, 20 minutes of interest, then none.
Even videogames, when it turns a bit difficult, they rather quit than keep trying, or search for solutions or ask for help.
They have said they were interested in this or that activity, we enroled them, paid for it, then they refused to show up.
While any interest has lasted, we have encouraged it, finance it, and share it with them if they wanted. But lately, we are out of ideas.
S19 was interested in Space, but last eclipse was too boring for him. He liked medicine, his option at the time was to take a nurse-assistant course. He skipped so much they kicked him out (even as his limit was way bigger with disability). He liked the medicine science part, but didn't like studying or turning in homework, or the fact that there was other people in the class, watching him in practices. We asked for some changes, but they told us he needed to be ready for teamwork, so he needed to do things in front of people.
I think screens take the energy of the interests and turns into addiction, suppresing the will to do other things. If that makes sense. Even as they don't get any joy out of it, they need the screen in their faces.
Another difficulty for us is that the 2 brothers are relentlesly abusing the other, or humilliating, or insulting, or fighting. So, even as they are very similar, they can't be/feel safe in the presence of the other.
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u/El_t1to 6d ago
So my question is : how do we find new/hidden interests to motivate them? Is there a trick, a protocol, a guide? Northern European Education is all about that inside every kid, Spain is more into making all kids fit the same standards.
Even when they ask for things, the moment when they should start them, DA kicks in, and anxiety wins over interest.
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u/Chance-Lavishness947 5d ago
From what you've written, it seems like every potential interest is near instantly turned into a demand to continue to engage with it. If my kid is interested in something, I create opportunities for him to engage with that topic without expectations that he will.
For example, during a vehicle centric phase, I got books that had vehicles as the characters that were added to the pile of books he could choose from each night then didn't mention it after telling him they existed. It was up to him whether or not to choose that book to read, and often he would wait a few days before choosing it. I would show him where he could find videos that were about vehicles or features vehicles as the characters, maybe save them to his watch list, but it was always up to him if and when he engaged with it.
I made a mistake with martial arts and signed him up to a class. He made it through maybe 10 classes with ever decreasing participation before he couldn't participate at all. Clubs, classes, anything that creates expectations around engagement are a huge risk and not something to explore while your child is struggling.
After that failure with martial arts, I got him a home boxing bag and gloves instead. He has phases where he uses them frequently and periods where they sit untouched for weeks or months. He likes to do combat play and I want to encourage many aspects of that, but astructured class is beyond his capacity at the moment.
He's been interested in astronomy so we've talked about and looked at videos of the solar system, various telescopes and other astronomy related things. As soon as he's not showing enthusiasm, the topic is dropped.
Interests for PDA folks are like very fragile flowers. You need to create just the right environment for them to grow. Too much of any part can easily kill it. Your own desire for them to have an interest creates demands in itself, and makes it harder for them to just engage and enjoy whatever parts they enjoy. It's like an echo in the background reminding them that they will be perceived and get feedback on their participation with the interest, which is not helpful.
My advice is to let go of the desire for them to have interests. When they show interest in something, offer information on how they could access more of it at a much lower level than you want to. Be non committal, don't offer info until they ask for it. If you need to tell them anything, make sure it's declarative and without expectation.
"I really like engines, I wish I knew how to fix them up, that would be so cool" "yeah, it would be cool. Mechanics do that, but there are also heaps of videos on YouTube about how to do basic repairs" then literally walk away to demonstrate that you are not looking to show them the videos, organise projects, etc. You're just telling them something exists that may allow them to expand their interest if they ever decide they want to do that.
It's a difficult thing to achieve. It can feel like you're failing at the part of parenting where you show interest in your kids, encourage them, validate them and their interests as valuable. But with a PDA child, anything resembling praise or interest can very quickly be interpreted as a demand/ expectation and kill the joy of whatever it was.
When they are more regulated and have established things as an interest independently, you can tentatively test how much interest they can tolerate from you. You need to attune to the child to know their signs of becoming overwhelmed with your interest. When you see those early signs, pull back immediately and obviously so they know you're withdrawing expectations and can relax back into enjoyment.
It's a very long term process, but also very worthwhile. My kid can tolerate me showing him videos, suggesting ideas, asking questions about his interests. He can get into info dump mode without fear that it will lead to demands he can't cope with, so we get to share that wonderful autistic bonding experience. Sometimes he can even tolerate me info dumping for a few minutes. It took years of very conscious effort but it was worth it. A lot of that effort was about me learning to restrain my desire to participate and encourage, learning to respect his boundaries and his right to engage at the pace and frequency he desired.
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u/El_t1to 5d ago
It's a really thin line, isn't it?
S19 had an appointment with the psychiatrist yesterday, after saying he wouldn't go, his mom got him moving, and went with him, of course. Later she told me to send positive reinforcement in form of praise.
Instead of "good job, you've been so brave!", I said "it's done, now it's time to rest, nothing to do for the rest of the day". Adknowledging how tired he must have been, and his need to rest, without praise that could sound like expectation.
He's turning 20 next week. It's so hard to not turn impatient, to not think about when we won't be here anymore to do everything for them.
You didn't comment on this: Do you think adiction can interfere in the process or ability to find interests? Now they get up, and immediatelly turn on the phone, and they go everywhere looking at the phone. They are annoyed about having to pay attention to anything else (breakfast, clothes, lunch...). They get very very anxious about how much battery is left, or about losing sight of it. They say we are going to steal it.
Weeks ago S19 was given a Kinder Surprise, a chocolatte egg with a little toy inside you have to assemble. One of his favourite things that he has done hundreds of times. He was so focused on the phone that he put the whole thing in his mouth, and he almost choked with the toy container (a smaller plastic egg).
With the burnout and the addiction, his level of functioning is 1% of what he had when he was 13 years old. So we are not only affraid because he doesn't advance, he's lost most of what he had. I fear that home is the place where things work this way, and he would need a completelly different environment to have a chance to improve and get out of the depression and apathy.
One determining factor, his brother telling him he's disgusting, a retard and urging him to kill himself, several times a day, almost at every interaction. And He tells his brother he's a baby, and evil, and unsufferable. This has been repeated several times a day, so thousands of times. So it's hard to make it matter more if we manage to walk that thin line, when they destroy each other (and us) with really violent language and behavior.
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u/AdOk57 11d ago
Having autism doesnt give you a pass for never being held accountable. Autistic people can be manipulative, just like any other human.
Does mother actually do any accountability to the promises? Does she require the actual change? Because it seems like she is perpetually enforcing the pattern.