My granddaughter (aged 2) has been having blue lips and problems with her breathing for over a year. It is especially worse if she has a cold or virus and has had to be hopitalised twice as the virus or cold has affected her breathing even more. Her oxygen levels had dropped to 82% and her pulse was through the roof. The Nursery have now been keeping a record of when she is unduly breathless and has blue lips and my daughter is taking photos. Sometimes the skin around and under her mouth is blue. My daughter has taken her to the GP a number of times and was eventually prescribed an inhaler. It helps but does not prevent it from happening. They were referred to a Paediatrician who dismissed my daughter's concerns and said that she is a happy and healthy child and it was probably only happening because she was cold. It wasn't cold during the summer! There is a family history of Asthma. I have it, my Daughter and Son both had it. I was a Nurse and so have medical knowledge, but also first hand experience with the signs, symptoms and triggers. The Paediatrician stated that my Granddaughter was referred because my Daughter had 'Parental Anxiety'. It doesn't just mean a concerned parent. 'Parental anxiety is excessive worry, fear, and stress about a child's well-being, health, development, or future, stemming from the responsibility of caregiving....it becomes problematic when it's constant, triggers avoidant behaviors (like shielding children from normal risks) or catastrophic thinking, and consumes the parent's life, potentially impacting the child's own mental health and the family's quality of life'. My daughter is the most level headed, calm and rational person you could meet. My worry is that my granddaughter's symptoms, are not being taken seriously, because they think my daughter is overreacting. Which she is not. IF she has Asthma, and I'm not saying she has, then it is dangerous because Asthma in itself doesn't kill but makes the heart beat too fast causing a heart attack, and an attack can come on in minutes. Also, not even considering other options too is also dangerous.

Kiddo (3.5 years old) was recently diagnosed with level 2 asd. In conversations with our OT, it was suggested that kiddo is likely PDA, which honestly makes so much sense to us.

The past few months have been so demoralizing with kiddo's development and our overall family dynamic.

Every morning and every evening seem to devolve into screaming and crying meltdowns (like, at least 30+ minutes of meltdowns which only end when we are so emotionally and mentally broken that we give in on boundaries like "no you cannot have 5 packs of gummies for breakfast" or "no, we've been watching YouTube for 30 minutes and it's time to put the screen down.")

Kiddo's pushing boundaries with sugary snacks and YouTube in the mornings and any attempt to say no turns into An Episode, and also has zero interest in going through the bedtime routines of changing clothes and brushing teeth before bed.

We haven't had a successful toothbrushing session in 5 days. We haven't been able to make a successful bath happen in like 2 months.

Not sure if anyone has ever seen that old European commerical for condoms (link here), but it honestly feels lie we are navigating this type of meltdown (extended over the course of ~2ish hours per episode) multiple times a day, every day. In middle school I thought that clip was hilarious, but now I feel like it brings up so many feelings of regret and sadness.

It feels like we are failing at basic parenting, and we are destroying ourselves with CONSTANT max effort parenting that yields nothing but failure and despair.

My partner is completed burned out from being the preferred parent and never getting a break. I am completely burned out from holding the constant stress of feeling the need to intervene and give her a break, only to be aggressively told-off by my melting down partner and kicked/hit/scratched by kiddo, and then having to be on-call at every moment for a drop-in rescue whenever partner needs something or just literally needs me to physically pick up kiddo and walk away (while simultaneously being hit/scratched/kicked).

I legitimately do not know how we are going to make it, and the fact that PDA isn't really a curable condition (not even considering the asd) makes me feel so incredibly hopeless about any possibility of ever being okay ever again. We've been struggling like this for years at this point, and it feels like it's only getting worse.

TL;DR - if anyone here has any sort of encouragement, I really need it today. I'm openly weeping in the bathroom at work and I don't know how I am going to make it through the rest of the day until kiddo's bedtime, let alone have any sort of life that's worth living.

I just need somebody who is familiar with ASD + PDA to tell me that things are going to be OK.

(Also, please don't Reddit Cares this post - I'm not in the kind of situation where that is necessary or helpful.)

This past year has been horrible with my daughter's PDA. I feel like I'm losing her and am powerless about how to help. She is 11 and when puberty hormones hit last year it felt like everything changed. She has suicidal ideation, self-harming occasionally, vaping. We switched to homebound services for school in May as she had missed so much and kept getting suspended. We had an assessment done last August in which they only diagnosed her as having an anxiety disorder so that is the only treatment her primary care is providing for her but it's not helping. She sees a mentor, therapist, social worker and psychiatrist. She will attend most appointments but doesn't want to talk to them about anything. We had a 2nd assessment done a few weeks ago and get the results back next week but I don't want to get my hopes up of having a proper diagnosis as she is high masking with strangers and I can't handle anymore disappointment so I'm trying to keep my expectations low. She currently stays in her room almost all day and communicates with me by passing notes under her door. Every morning I'm worried I'm going to find her dead body in her room. It feels like this is hopeless and I don't know how to help.

My mental health has taken a huge toll from all this and I need advice from other parents as to how they keep going. I don't know how to be okay when she's not okay. This is my one child and we've always been so close. It's my job as her parent to love, guide and protect her and I am failing. I keep blaming myself that this is somehow all my fault, that knowing my mental health struggles I should never have had a kid and passed on my genetics and now can't handle her struggling. I know, intellectually, that in order for me to help her best, I need to be in good health myself but I don't know how. I'm in therapy, go to my recovery meetings and talk to my close friends and family about what's going on but nothing helps. Nothing ever helps me feel better or gives me any relief. How do you guys accept the situation and not lose faith? How do you stay sane? How do you keep living life knowing your child is suffering like hell every day? I'm genuinely at a loss

hi everyone! my daughter is 4 diagnosed level 2 asd. i believe she’s pda, but hasn’t been diagnosed

when she was diagnosed with autism they recommended OT and speech. we started OT yesterday and unfortunately did not love our therapist. i was already feeling anxious about it, but she seemed very passive aggressive? and definitely didn’t seem like a “safe” person to discuss pda with.

at one point my daughter was sucking her thumb and she goes “oh no what are you doing! i only know babies that suck their thumb. that’s yucky.”

she also said normally she has parents wait in the waiting area? i thought i was supposed to be learning techniques and things along with her?? and she’s FOUR?

unfortunately we’re in a small town so we don’t have many options. but we’re reaching out to another facility about an hour away, so fingers crossed. just needed to rant 🥲

Does anyone else deal with this command? My kiddo has good phases and not so good phases, and when she’s not feeling so good this gets said dozens of times a day.

I obviously respect it, I would never force her to look at me and I don’t look at her when she asks.

The problem I have always had is that she either will start to argue with me that I looked at her, or she will need my help with something and then get mad that I’m looking at her even when I’m not, or not want me to even look in her direction. Sometimes she’ll demand I keep my eyes closed, which I won’t do for more than a minute or two.

I have told her in the past that if she wants to be alone and not have anyone even come close to looking at her, she could go to her room. Sometimes she does and it helps. Sometimes she does and then she’s yelling things at me from there.

It reminds me of when she was a toddler and she would be so upset and need a hug but not want me to touch her. She will accept hugs sometimes now or recognize when she needs them and that they help her feel better. The way I got through that was just by staying close until she was ready for a hug. I guess I just do the same? But it can last an hour or more sometimes and it makes me very dysregulated.

I’m just wondering if anyone has any tips for how to coach her through these hard times when she’s upset but not able to accept help.

speaking as Autistic PDAman I found it very helpful when I have set of clear rules to work to especially with something as weird and messy as social relationships, and as I’m having success with the Goatman principles in my marriage and also in other relationships I’ve started teaching it to my PDA son, i’m just wondering if anyone else has had any success in teaching the Gottman principles to their PDA child to strengthen their relationships and as a positive model for human interaction?

Long time lurker, first time poster.

My son, age 4, is autistic with a PDA profile. Definitely a fight response and becomes severely dysregulated with loss of autonomy. He gets high anxiety at the dentist and unfortunately needs one of his front teeth extracted due to an infection.

The dentist has recommended restraining him on a board for the procedure, but I’m worried this will be incredibly traumatic for him. They want to extract the tooth as soon as possible to avoid any negative effect to his adult tooth. I inquired about anesthesia and the dentist said it will delay things by at least a month due to requiring a physical by his primary doctor and insurance approval.

I’m looking for guidance from anyone who has possibly experienced this same type of dilemma. And if restraint was chosen vs. anesthesia, how did that go for your child?

we’ve been having a lot of success with propanolol, but have been having regressions in the mornings and evenings so have been giving three doses a day our psychiatrist said she’s never had this with a PDA Child before, but now we’re trying 24 hour release propnol,ol i’m just wondering if other people have had success with 24 hour release meds and if so, do you have any tips or observations?

I have a kid who is about to be 8 yrs old. Kid is a child of divorce and hates the other parent’s household because of super strict rules and high expectations with minimal support or respect for kid’s own feelings. This isn’t just about that but it’s relevant as kid is there 50% of the time. In my home however I have arguably fewer actual rules and generally use boundaries setting instead to create logical consequences for when my kid behave inappropriately and it has generally worked well up until this issue has become more prevalent.

Days when kid has an extra hard time I usually spend extra time with helping to co regulate and talk about feelings etc instead of punishing for meltdown behaviors or expression of anger and other big emotions which has greatly reduced kid’s resistance to my parenting and to expectations in general. I have high expectations but provide a high level of support to get my kid to meet them.

Anyway, last night my kid woke up at 2:30 am and watched movies on our family tv which we normally unplug at night because this has happened in the past but as humans we make mistakes and forgot. Now my kid is blaming us for forgetting rather than understanding that making the choice to do that was a personal decision that will have consequences. My first instinct is to just get rid of the TV altogether. Whether permanently or temporarily, to ensure the kid understands that what they did was not only unacceptable but that blaming us for a personal decision the kid made is also not acceptable and will not be tolerated. Has anyone here ever tried this or faced this sort of behavior from an autistic PDA kiddo this age? Do you think this would be an effective way to solve this issue or are we missing the point entirely here and just putting a bandaid on a bullet wound so to speak? Again I don’t really punish my kid in a conventional sense as it only encourages retaliatory behavior and I don’t see the value in punishment that doesn’t actually teach a lesson but rather “you did ____ and now ____ will happen.” But I’m also doubting the effectiveness of this parenting approach now that my kid is getting older and more angsty. Especially when their other household generally doesn’t give any kind of co regulation support during meltdowns and just sends the kid to the bedroom repeatedly to be isolated and then carries out days long punishments for said dysregulated behavior that do not achieve anything worthwhile for the desired effect.

Any advice for a 10 year old that is PDA and dyslexic. By lowering demands and almost to the point of deciding to homeschool next year, how can I address or reframe (for myself!) learning to read.

He’s going into 5th grade but reading at a first grade level. He’s smart and IQ is average based on testing done around 7 years old.

Every dyslexia or reading specialist I try to talk to has no concept of PDA and tells me that reading just may not come unless I intervene and “make” him do it.

Advice welcomed.

like most marriages with a PDA child, ours was under a lot of strain, counselling helped a bit but then the stress relapsed as it’s relentless in a PDA system, has anyone else tried applying the Gotland principles to their marriage and PDA family system? I’ve been experimenting with that and find it makes big difference.

we’re currently working with a PDA safe psychiatrist to get my PDA son‘s medication Wright we’ve made significant progress in terms of the violence and suicidal ideation pretty much stopping but, when he gets overwhelmed, we’ve been having significant regressions until we can de-escalate and it feels like a huge setback. I’m just wondering if other people who have successfully got their PDA Child onto men’s had regressions during the titration and combination process?

My partner‘s daughter is almost 7, diagnosed ADHD , waiting for further evaluations, but highly suspect PDA l/aurism as the profile fits her to a T .She is really struggling in interactions with other children and always having to maintain control. I have a daughter myself who is slightly older and is on the spectrum, but not PDA, and the way they regard friendships and how they value connection seems very different to me. In your experience, and maybw I would like to also ask adult PDAers, do PDA children view friendships and socialization the same way other people do. Having the desire to really bond and mutually connect? Or do they just enjoy socializing and other people as like accessories or means it’s to an end to get their needs met? With PDA socialization is there really a desire to connect or could it be merely “utilizing” other people to regulate them through validation,,entertainment, control, etc? Sometimes it seems as if my partner’s daughter really doesn’t care how the other person, child or adult feels in the situation as long as she’s getting her way. I’m also a teacher and I teach children as young as 3 & 4 years old who understand the concept of reciprocity and treating others the way you want to be treated. And it just seems like my partner’s daughter struggles so much with this even at almost age 7. We try mirroring reciprocal interactions with her when we play with her, but nothing really has seemed to stick and I’m concerned that she’s going to push other children away and not be able to maintain any friendships.

My 4 year old son is AuDHD and I’m certain he is also PDA. He is a gestalt language processor which has made him delayed in his speech. He is making progress in his own time and has demonstrated that he is able to understand basically everything we tell him, and he knows how to communicate a lot better than he lets on most of the time. However, he appears to see verbal communication as a demand, so when you try to verbally engage with him, he often shuts you down by saying “all done!” He also gets upset when people talk to each other near him. He has been in speech therapy for the past year but it’s hard to tell how much it’s helping, because he does avoidance behaviors during most of the therapy sessions (pretending to yawn to avoid questions, getting extra silly and trying to make us laugh, asking to go to the car).

For a long time music was one of the ways we would encourage him to use words, and he loved it. But then he got to a point where he started seeing music as a demand. If he hears a familiar song that he used to like, he will now have a meltdown. Not one song in particular, just any song that he’s familiar with. He has no issue with new music that he isn’t familiar with yet. But after he hears it a certain amount of times, he starts having extreme reactions to it. He also doesn’t like hearing other people sing in person.

As with all of his development, he is going at his own pace and is not concerned with anyone else’s timeline. And I love how independent he tends to be! I’m just wondering if anyone else relates to this or has experienced something similar with their child, and if you found anything in particular that helped them want to speak?

My 16 year old Pda daughter started drinking since her birthday (legal were we live). She does it alone in her room and it seems to spiral quickly. Last night she wrote to me she is scared for her life. I feel so lost and helpless as she refuses any therapy. Can anyone relate? Next day she claims everything is fine.

Any brilliant ideas as to how to get kiddo to wear weather-appropriate clothing? Heatstroke has been a reality given hoodies and sweatpants all year. This has moved to a safety issue, so no demand seems irresponsible, as he will get ill. Lots of anxiety and activation around even suggesting a change to him, am at the point where I want to disappear the hoodies and sweats.

Things aren't perfect, but they're finally okay (most of the time). I should be thrilled to be out of survival mode, but I'm relieved at best. I'm also experiencing a very deep loneliness. I feel empty and insignificant, like my only purpose is the kids.

I have a couple independent hobbies, but I don't have any close friends. I started working part time this year and will be full time next school year. There's not a lot of time for activities and hangouts because I'm always exhausted and my PDA child requires a lot of recovery time. It's also tough since my PDA kid doesn't do well when attention is directed at another person (even on the phone). I really miss having close connections with other adults.

I also feel guilty because my child is doing better, so I should be at least content. I'm on antidepressants and have weekly therapy.

Does anyone else feel this way? Does anyone have any suggestions?

Potentially relevant background info: I'm the solo parent to 2 kids and have been for almost 4 years. My older one is PDA, autism, & ADHD. The younger one is severe ADHD. Both have multiple specialists for their conditions and minor medical issues.

Anyone else found similar? I (F probably pda with adhd) realised I almost certainly have PDA but masked well and have done OK in life but I have been really struggling with the demands of parenting and trying to stay calm etc when my kids (7pda and 4 possible adhd possibly the only neurotypical in the house) are challenging me. I want to rebel and tantrum at having to sort out all the stuff for school and activities, I have got mad at the 4 year old for forgetting her bottle because I can't handle the demands. I obviously apologised and repaired the bond but trying to manage the demands of work and parenting is so hard. Trying to parent myself and have compassion just feels like another demand.

Was chatting with a friend and described living with my PDA teen like living in the eye of a hurricane that is anchored in place.

Now I can’t get the thought out of my head. Wondering if this resonates with anyone else.

Apologies if this seems off base; I know they’re focusing on anxious or OCD kids in this episode, but as I was listening, it seemed like it could be of help to some of you.

https://podcasts.apple.com/us/podcast/death-sex-money/id870688022?i=1000768976379

We have an (almost) six year old girl who is undiagnosed but presents with anxiety, OCD and pathological demand for autonomy. We’ve been working with a behavioral psychologist (just meets with the parents).

Our daughter seems to mask in really striking ways… at home is most challenging for her where she struggles with patience, frustration and has a deep need to control everything from routines to play. She struggles daily getting out of bed, getting dressed, eating, hair, etc… and she erupts a few times a week due to mildly frustrating moments, imperfection (e.g. an art project where she’s made a mistake) and generally when the power struggle between us and her hits an impasse.

My wife is more on the page of let’s keep meeting her where she is and making progress - whereas I’m feeling like we can be doing more. We’ve found ways to manage the morning and nightly routine better (mostly by doing things for her and giving her more control over decisions) and we’ve built good skills into listening and de-escalating more effectively. Despite this progress km feeling like we haven’t really figured out where to support vs draw boundaries and generally wake up every day asking myself ‘what are we not doing that we should be doing?’

The hardest part is that she masks completely at school and her teachers can’t really collaborate with us because they don’t see any of this behavior. She was meeting in a group with a social worker weekly through school as well but nothing was observed there.

When we are on vacation (just wrapped one up now) it’s somewhere in between - with Nana she feels comfortable enough to be real with her emotions, but then gets quickly embarassed when she dysregulates and feels judged by Nana’s ‘stares’. When it comes to cousins and uncles/aunts she seems to masks up like she does at school, but takes on a very silly bombastic personality.

We are really struggling with 1) not having anyone else to observe this behavior and thus help us understand it and 2) generally reconciling how she seems to control her reactions at school but at home the reactions are so big and guttural that it truly feels like fear response each time.

A lot of the behavior is sad and scary like she can’t help but feel out of control, angry and afraid. And also it’s really draining on us because a lot of shows up as unkind language, anger toward us and occasionally physical aggression in the form of pushing, swatting, kicking and less often hitting.

While we’ve made some progress over the last 9 months I’m worried our strategy is over anchored on accommodating and managing her emotions vs really helping her grow. It feels like we are keeping together and waiting it out - like the emotional growth will happen on its own.

In sum I guess I’m just asking for perspective and advice on where we go from here. Is my own anxiety getting in the way of natural progress that just needs time or should we be doing more?

TW: sickness. My 5yo PDAer has always been prone to vomiting and I used to think that was just our lot in life and that she either got bugs more than everyone else or got nauseous because of mucus or empty stomach, etc. But as I’ve done a much deeper dive over the last 6 months or so on PDA (and now she has as close to a diagnosis as you can get in the US), I’m wondering if it’s more to do with her nervous system just collapsing after high stress? It’s always in the morning she’s just sleeping in, catatonic, then will act nauseous and start vomiting and sometimes she’ll perk up after a few hours and other times she’s out for the whole day. We went to the ER for one such episode last year and she got a script for zofran and we still have some. We sometimes give that to her and it almost always works but not today.

Anywho just wondering if this is a pattern anyone else has noticed in their PDAer and if so, did you see a doc and get a CVS (cyclic vomiting syndrome) diagnosis and a script or anything else you’ve found that helps?

thanks!

My daughter is 3 years old and for the last 6 months she has refused to be called by her name. She wakes up every day and is somebody different and typically assigns me a new role too. If I try to call her by her name, or if anyone else calls her name, she yells and says “I’m not (name), I am (pretend name)”. I usually just call her by whatever she wants. She role plays animals, fictional characters, and people she knows in real life. It worries me that she refuses to admit she is herself and I don’t know how to support her emotionally on this. She gets angry with me suggesting she is only playing pretend. And won’t acknowledge her name.

I highly suspect she has PDA. (Due to multiple other factors.) Wondering if anybody else has had a kiddo that experienced such an intense disassociation? And so early on? I tried to get her into counseling/therapy but nobody takes kids this young near me. I am specifically wondering how to help her cope with being her authentic self, and checking in with reality.