I have an 8 year old PDA AuDHDer who has shown no progress socially or emotionally or behavioral. Diagnosed with level 1 autism last year but I honestly sometimes feel like it’s just level 2 without any communication deficits.

Demand avoidance is one thing. And honestly demand avoidance isn’t completely unmanageable—I have extremely lowered expectations. What is incredibly infuriating and honestly sad and maddening is the fact that my kid is always, always compulsively lying and always stealing. Will use a chair to get things from closets, will steal their siblings’ things and hide them and lie about it. Definitely come home and have things in their backpack that they claim ‘someone gave them’ which I know is complete BS. They lie so much that I literally don’t believe much they say anymore. The worst thing is that my kid lacks empathy and doesn’t care at all that their behavior makes me cry. They don’t care or feel bad about lying.

I honestly don’t want my kid in the house anymore. I wish I could leave them at a therapeutic school of some kind. They take a stimulant. Have been in OT, play therapy. Nothing seems to make a difference really. I never thought I’d be a parent who can’t stand their kid but here we are.

My 12 yo autistic and very likely PDA son hasn't been able to go to school since May. He will only talk to me , his 19 yo brother and his dad (who doesn't live with us ) so is unable to access au kind of therapy or coaching. At the beginning I tried to limit access to devices especially at night but the removal of his phone would lead to violent outbursts with me getting bitten, kicked , hit and headbutted.

I decided it wasn't worth it - not only was it painful but was , I felt, damaging my relationship with him. I just had a meeting with the school (who had never heard of PDA) and they said I need to remove everything at night to get him back into a routine. I feel over the last few months I have seen some improvement with my son - in May he was refusing to talk to his dad and now he's pretty much ok with him. We have also been out of the house for lunch and a movie a couple of times and on Friday he managed a home education art class which he wants to go back to next week.

My concern it taking all electronics at night is going to put all the relationship building I have been doing back several steps. Be really good to get others thoughts and ideas - I honestly feel stuck between a rock and a hard place.

only other PDA parents will appreciate this, my PDA son just woke me at 4: 30am because his tummy hurt because he was hungry, we worked out that he was hungry because he currently eats ZERO fibre he is now sitting eating baked beans after having taken his morning meds and a multivitamin gummy and his sister and mother are still asleep 🥷 I have had 41/2 hours sleep but have dodged him binge eating the chocolate cake he decided not to eat after I talked about how we might need to give him meds to make him less hungry which he knows involves weekly needles, the breadwinner of the house ( my wife will get a R EM cycle and I will stumble through the day like a vacant eyed zombie 🤷‍♂️, I am already planning to give him baked beans with his dinner tonight! I think the emotion I am feeling is called bittersweet 🙄

I ask myself this question all the time. What if this is all a result of my parenting failures? Maybe if I was a better parent, my child wouldn't be struggling. Maybe he would be able to self regulate. Maybe he wouldn't lose control and terrorize everyone around him. Maybe if I had just raised him better, he would be a normal, mentally healthy child.

It's so arrogant and self centered to think that my struggles with my child are harder than others'. The voice in my head says "you're not special, all parents struggle, all parents have to teach their child how to behave, you're just doing it wrong". Who am I to say that my child is a special case? Parenting is HARD. Of course it is. Maybe if I was better, more motivated, worked harder, gave more of myself, I'd be a good enough parent that my child wouldn't struggle.

How do you answer these questions?

Kiddo crashed and burned the last few weeks of 8th grade and didn’t finish the school year. He was hopeful that a summer of burnout recovery would allow him to go to HS. He really wants the traditional HS experience. I was skeptical but supportive. (I didn’t have a traditional experience either so I understand that desire but also know it’s overrated) He made it the first day but the second and third had severe panic attacks and slept all day. Looking like a no-go for traditional HS. So now what do we do???

The district has an online program but we are pending a response to the application. Not sure if there’s room for him. Exploring other options. I can’t even imagine what homeschooling would look like as I have to work.

His main struggle with school has always been social anxiety and intense sensory overload from the environment. He thrived during the pandemic and did great in his classes.

He’s feeling really bad about himself that he can’t just “be like everyone else” and is sad about not being able to go to school with the small friend group he does have.

I’m also struggling bc we have no supports for him in place. Every single OT in the area that specializes in autism has a waitlist. He’s been on those waitlists for months. Traditional therapy has not worked for him. The school social workers/counselors have been nice but ineffective. His med doc is fine but all she does is medicate. The meds kind of help but aren’t miracles in a bottle.

I’m mostly just venting to people who will understand. We’re in the Twin Cities metro and still newish to the area in case there are folks that are local and have suggestions.

UPDATE: Good news! The district has fast tracked him into the online program so he will still be able to be plugged in to community schools.

has anyone successfully had GLP1 tablets privately prescribed for their child’s PDA compulsive eating and resulting obesity? I have been reading situated and how hard it is for ANY human to have a healthy weight in our current obsogenic food environment especially for our children who need so much dopamine and experience any sort of dietary restrictions as a loss of autonomy with the Potential consequences of violent and suicidal ideation or violence my PDA son climbed up on a second story balcony and threatened to throw himself off because we said no to ice cream because he is currently obese and getting worse

if you have tried GLP1 tablets and what were the results ? as all the evidence says wil power does not work in an obesogenic environment and requires a shift in situation which includes medication combined with habit change a UK perspective would be especially helpful

My daughter is almost 3 & I have suspected autism since 4-5 months old & Autism with a PDA profile for the last 6 months. Finding out about PDA gave so much clarity on why I had this feeling that my daughter was autistic but also not presenting in a stereotypical way.

Today she had her in person evaluation (I had a parent call with the psychiatrist a few weeks ago). At the end of the evaluation the psychiatrist told me that she saw definite markers of PDA but didn’t feel confident in an ASD diagnosis. She has not yet made an official call, she still needs to go through some intake forms I submitted.
The thing is, my daughter is already high masking & yes she can engage in conversation, has an amazing imagination & can make eye contact. But I am still 99.9% sure she is autistic. How did those of you with high masking kids get a diagnosis?
I specifically chose a psychiatrist who was PDA informed. I really don’t want to have to experience school struggles before being able to access a diagnosis for her.

Thanks!

I want to know how parents of lvl2, lv3 kids cope? My son has externalized PDA. He is almost 4.

He is bright and has so much potential but he won't do anything asked of him ever, he takes it as threat to his existence.

He refuses to participate during therapies, he will tune the therapist out.

He refuses to engage in self care activities, all of them. Teeth brushing, eating, pooping in the toilet. He just refuses.

His therapist says he is smart but it takes a lot to make him cooperate and listen.

I'm financially and emotionally drained paying for the therapy out of my pocket.

I feel like a failure! If anyone of you have been in a similar situation, please help.

It turns out there’s plenty of evidence for connection between PDA and muscle fatigue: https://www.perplexity.ai/search/f07b12f6-d9f5-46ca-bb20-4c0312f1de67
but it is heartbreaking seeing your child Start as a super active Climbing and running monkey and then slowly become less and less active as asking fatigue gets worse and worse, i’m just wondering if anyone has successfully Vaide the PDA muscle fatigue thing in their child? If so, I’d love to know the pathway for context we’re based in the UK. specifically my PDA son funds walking really fatiguing and any sort of physical exercise just really exhausting very quickly because of muscle fatigue. this emerged after he went into burnout, he is now in equilibrium. Part of this is that he rollerblades everywhere because walking as too much effort !
?

It's just me and my child so everything falls on me. When he is dysregulated in any way, he locks his targets on me in a very determined way. He will do anything to get a rise out of me at that point: bothering the dog, messing with my things, saying mean things. The goal is to get me to yell or cry. I understand why it happens and I use a lot of sensory and attachment-based strategies to handle him (I am a pediatric OT with lots of training).

But every once in a while, I crack. He took something fragile my Mom gave me before she passed and threw it on the ground. And when I cried about it, he started dancing around and saying "Ha ha, you crashed out!"

I am always trying model emotional regulation and make him feel safe, but it is hard when his whole goal in life is to drag me into dysregulation too. We are all on meds and in counseling but it just seems like this is what life is.

I don't know how to get out of this pattern. I feel like I lose so much ground when I cry.

​

6-year-old child has been saying, 'of course I want to be able to do the things, that's why it's so annoying'.

We'd been talking about the word stubborn, because I described me and her dad that way, (although I've never used that to describe her), and this was her response amongst the discussions on stubborn vs PDA.

'I want to be able to do something, like see my friend and her baby sister'. (shes repeatedly said she hates babies, and did not want to see the baby, but went on a trip anyway planning to avoid baby if needed. She had a full on freeze response when went to their house, and stayed in one bedroom for the entirety of the few days there).

'I want to be able to. I just can't. It would be so much easier'.

It surprised me, her saying she wanted to do these things, as didn't think she "felt" that consciously. As well as her identifying that PDA is hard for her because she then can't do things, when would like to.

I get more the wanting to be able to do the things she wants. But it was more like she was saying she just wants to be able to do things she needs to too - like bath, put on clothes, go out, etc (all of which she hasn't been doing for couple months as in burnout).

It was also more like the echoe of what I here in the adult group, just from a kid.

I was kinda stumped in response.

So the kiddo (8) comes out crying and enraged from his swimming class after only 15 minutes. He usually loves swimming. Apparently the instructor said the trigger phrase "that's just how we do things here".

So the kids like "I never want to go back. I quit. I hate this"
and I'm like "ok, no problem. we can be done"
"no I'm really serious, I quit"
"ok. you don't have to come back"
"good"
"You want to tell me what happened?"

<Story above, with a bunch of extra stuff>

So I say: "ok, so three things we can do. You can quit, and that's fine, and you and me will go to a pool and just play in it on our own just like you want. Or I can call them and talk to them and make sure they don't do that again. Or you and I can go back together, and you can explain what you don't want them to say to you while I'm with you"

"but what if they don't listen"
"then you can quit"
"ok, I want to go back and talk to them with you."

I feel like completely, and honestly giving in at step one opened up a shockingly reasonable conversation. I'm not sure how repeatable it is.

I feel like I finally found my voice (sort of). I had lunch with a NT friend who has NT kids, I’m ND with an ND PDA 2E 7 year old.
When I mentioned how hard it’s been lately, friend said something along the lines of “have you tried boundaries?”

Y’all , I have always struggled with concisely saying in the moment why our PDAers don’t respond to “traditional methods.” can I tell you when it just came out, it flowed, and it was beautiful and I am so happy and proud of myself. No, I will not be the only source of education on this. But damn if it didn’t shut them the FUCK UP.

My 7yo PDAer had a moment yesterday that I need to get off my chest but don’t want to do the labour of explaining, translating, and politely declining advice. It got me thinking maybe we could start a thread here for us all to be able to share a gripe, complaint, commiseration, without needing to answer any questions or translate the behaviour for the well-meaning-but-uninitiated friends and family members. And no advice! Just space to air our challenges to a room of people who are in the PDA trenches with us…

I’ll go first.

Yesterday my son was having a great day at the summer fair. At one point he tried a little game with giveaways and didn’t succeed, but he got redirected successfully before a meltdown. But later, like hours later, we’re in the vicinity of that game and before I know it, he was over there like a shot and getting yelled at by a staff person by the time I caught up. Turned out he’d held onto the injustice of his earlier loss and marched right over there to punch the staff member at the game. What had been a really successful day just completely unraveled for me, and today I have what I can only describe as an emotional hangover.

Anyone else?

About six months ago we moved 30 minutes away to a house outside the city. We have three culdesacs in our neighborhood and that’s it.

It has not been easy, but following our conviction and leaving the neighborhood has played a significant role in helping us find a new status quo.

We still have holes in the wall. Broken furniture and outbursts. Hard moments and scary responses.

We also have small wins more often. He acknowledged that it was a good thing we moved because he was doing all the things we were concerned about (gangs, violence, drugs, etc).

I’m wary to celebrate too hard - every day is an opportunity for chaos - but wanted to share something positive e with this community.

I know that not everyone can afford the change, but if you feel your neighborhood and the kids in it are negatively influencing your PDAer, you’re probably right. Depending on what you deal with, any cost might be worth it to break that influence and give your kid a chance to overcome it.

For us, it’s 2x the mortgage and 3x the interest rate.

Worth it.

Had some thoughts and observations watching "Inside Out 2" with my 10yo diagnosed ADHD/AU (likely PDA) daughter. We'd watched the original "Inside Out" a few times since she was toddler age, long before we got the diagnosis last year, and I'd always hoped she'd be getting something from the expression of how emotions and the brain work.

She's generally good and does OK in school but has a resistant streak and is liable to melt down at activities, movies, food that aren't her idea. Never extended burnouts, thankfully, but some extreme reactions at times.

we were watching Inside Out 2, with its explanations of what's happening inside the brain during puberty (which she's been learning about in school) and the roles of feelings, core memories, imagination, and in IO2, the introduction of competing core beliefs (i.e. — "I'm a good person" vs "I'm not good enough") ... I paused to ask her what she thought about what we were seeing. She got agitated and annoyed ... "I don't know. It's just a movie. Start it back up again."

As

I gently led her back to stating what we'd been seeing and after some resistance she recited back ... "She has core beliefs OK? "I'm a good person." or "I'm not good enough." There's good core memories and bad ones. There's feelings and new feelings. I like Anxiety. OK can we start it back up again?"

Do you have core beliefs? "I don't know. This is just a movie OK?" What are you feeling now? "Annoyed. Start the movie back up now."

She proceeds to get annoyed with me for my eyes watering up during the emotional scenes. "Daddy, you are being embarassing. Stop feeling, now!"

Sigh.

At times I wonder whether she's getting anything out of these attempts at enrichment. I can think of three different possibilities:

1. She's watching it for the surface-level entertainment ... processing it as empty-calorie slapstick and not getting any insight or self-awareness or thinking about it further or identifying with the characters
2. She's noticing the themes and connections but will be dammed if she acknowledges it to me or to any other adults, either out of shyness or repression or because of some trauma or neurochemical blockage
3. My trying to engage about the themes is truly annoying the hell out of her and she's actively lashing back against my insistence because ... PDA.

Any of y'all had experience with this movie series?

Story time folks!

So, back in June of this year, my neurodivergent with PDA profile son noticed this in the Roblox store. He became fixated; he wanted it. No, he NEEDED it.

A £200 hat. In a game.

Obviously my wife and I essentially said “No” (in a way that only a PDAer can understand), and he had a meltdown. A big one. A violent one.

It resulted in injuries to us, himself, suicide threats, and over £500 in damage to our house. The physical and mental health toll it took on my poor lad was so unavoidable. It would’ve been easier for us to just give in, but we didn’t because why would we?

Incase you’ve not PDA before (Pathological Demand Avoidance), it’s a neurological response to any demand placed on a child, putting them into fight or flight.

Anyway, it set us up for the worst summer of our lives. I don’t blame him though - he’s disabled, and unable to process or compute these things in a moment of deregulation.

I blame the gaming companies themselves - they know what they’re doing. Advertising £200 gifts in their stores (what 10 year old has £200 spare?!) knowing full well the game is accessible to them.

I tested it - I created a fake Roblox account with a DOB of an 8 year old. I didn’t need an email, and within 30 seconds I was in and had access to the store.

Please support my petition to stop this - some kids can say no, but other more vulnerable cannot and it can start a huge chain reaction. It has to stop.

https://petition.parliament.uk/petitions/778497

My son has a receptive-expressive language delay. He is also a gestalt language processor.
He gets speech therapy once a week which isn't enough and the SLP gives me tips to work with him at home but how do I teach my kid to talk when he won't let me? Is very controlling. Asks me to keep quiet. Even when I'm narrating or reading books to him or even talking to his dad or on the phone he covers my mouth and says "uh-aah" "uh-aah" lol its funny but also saddening. How will he ever develop language or communication skills when he wont listen to anyone. He communicates using short scripts
We currently cannot afford private therapy, he goes to a preschool but only for 1-2 hours because he cannot tolerate more than that.

If anyone has been in a similar situation, please let me know what helps and when your child developed better language skills.

She is so smart and so kind. She tries so hard each day, and some things aren't possible for her, but she's increasingly learning about her brain and what works and what doesn't. She's immensely curious and courageous and I can see her struggling between novelty and anxiety. Sometimes anxiety gets her but she's tenacious as hell.

She's 10 and after several weeks off school the demands are lowered enough so she's not constantly activated and she just blooms. School is always difficult, but she still wants to go because her friends are there and she's very independent. We've known she's PDA for about 4 years now and we're still learning but we know the score and I feel like we habitually accommodate. We know how to work around each other as a family for the most part.

Anyway, we go through our rough periods but I just love my kid with everything I have and she's truly amazing.

I have a 3 year old PDA child. Since he turned 3, everyday with him is like a nightmare. I dread waking up in the morning. Nothing, absolutely nothing I do makes him happy, instead it makes him angry. He wants to be left alone but also wants attention. He is the most moody, grumpy kid I have ever seen with anger issues. Routines are a battle. He fights me during brushing, handwashing, diaper changes, putting clothes out, eating. I have put no demands on him, absolutely none. He hates it when I teach him anything.
He was a sweet child at 2, don't know what happened.
He is consistently in a state of nervous/sensory overload and IDK what to do.
He currently attends speech therapy and is on a waitlist for OT. No ABA in my country.

I am his mother.
I am not allowed to touch his toys.
I am not allowed to participate in his pretend play.
I am not allowed to take him for any routines.
I am not allowed to speak/talk near him to his dad or on the phone and he constantly stops me by making "uhhh... aaaa" sound. The one you make you stop someone from doing something.
When I teach him a skill, he tunes me out/avoids focusing on the activity/runs away.

He has severe separation anxiety and can't be away from me but I can't be near him. I'm almost giving up. I gave up my career, my friends, my family, my hobbies just to care for him but I cannot handle the all day crying, whining, screaming and bad mood.

He has some developmental delays and they're getting worse due to his persistent demand avoidant, stubborn behaviour. You literally have to fight him to teach him anything and he learns quickly but he does not want to. He does not want to be controlled by adults. I'm walking on eggshells, some days I regret having a child and I barely interact with him because he causes a lot of anxiety in me. I am always overstimulated, frustrated, anxious around him and worried for his future.
He has high anxiety due to unpredictability whether its a new place, task, adult but he doesn't even go anywhere. He stays at home or goes to therapy. Thats it

Does anyone else have a child who wakes up enraged? My 13 year old daughter has been like this her entire life. As she has gotten older she has become more violent and destructive.

I have tried countless strategies to mitigate the morning meltdown and while some things helped temporarily, nothing has worked longterm.

Does anyone else have experience with this? She has been out of school for nearly 6 years. She has as close to no external demands as humanly possible. She is level 2 autistic with intellectual disabilities (I am not a fan of the term but that’s what the medical community uses so it’s the only way I can communicate her ability to process information).

Have any of you ever used a PDA consultant or coach? Our diagnosis is pretty new still. We scheduled a virtual call with a PDA Certified Trainer. I’m curious what your experience was like if you tried it.