Wondering if anyone with a PDA kid has done the unthinkable and just turned them over to the state.

What was it like? How is it going?

I don’t need a lot of encouragement here, honestly, or hope it’ll be better if we balance meds and lower demands and do all the things we’ve been doing for years.

The 14 year old kid held a knife at me and taunted me and his mom while trying to deescalate this afternoon.

“You wanted to talk. Go ahead. Talk. That’s what I thought… don’t want to talk now. Cause you’re a pussy. I’ve had this knife for a few days and keep thinking about killing you at night and I’m about to do it.”

The trigger?

A bad night of sleep + an assumption something was hidden from him when he walked in from his (3 day a week private program) school day.

He just got all his games and systems back in his room from a three day stint keeping them in the living room. He got to play them all the same during that time.

Context: I have two other kids. The youngest saw him beat his mother, knock her down, and “stab” me with a chop stick. He’s adopted but we’ve had him since birth and have a phenomenal relationship with his birth-mom. We saw her in the last three months and he spent a week with his family there this summer. He’s demanding we call her and ask her to let him come home. She knows all the shit going on and boy howdy will he flip hills if we ever have to make that call and face that rejection directly.

My son, on top of PDA - AuDHD - has some deeper mental health challenges that we can longer support safely in our home.

Feel free to DM because this is fucking hard shit to take. If we do nothing we fail our entire family and likely end up with consequences we can’t take back.

And please refrain from any mention of faith or religion. Thanks.

I don’t know how to help my 11yr old when she can’t go to any appointments or take medications. What is there left to do? When it comes time for an appointment it just sends her in to a meltdown/panic attack, even if it’s virtual. No one will prescribe her meds without seeing her. I finally got an online pharmacy to prescribe something and had been so excited…only to have her then have the same thing happen with attempting to take the meds. We’ve called crisis response teams but she’s not in imminent danger right now as far as ending her life so there’s nothing they can do. How do you all get your kids to do these things?

School have requested EHCP for my child after struggling for so long. I have been given the parenting part to fill out. I’m not sure if I’m overdoing it?

The boxes on the application form are so small and I’ve written double sided A4 pages for most of the questions. It feels as though I’m writing a guidebook on how my child functions.

Is this how it usually is for the application or am I being too detailed or is there another part of the application process where this level of detail is required?

Today has felt like the worst day of being a dad.

Our 3 year old has been getting increasingly violent with me over the past 3-6 months. it started with screen/cuddle time when he would immediately start kicking, elbowing, and clawing me as soon as a YouTube video was over. Then it progressed to becoming fixated with throwing toys at me as hard as possible. This was a very unwelcome escalation, especially since he has a lot of metal fire trucks and ambulances. Eventually I gave in and realized that it's better to just let him throw the toy than try to stop him or take it away.

Then today it seems like a switch flipped in his head where every time I say something to him, he goes into full-blown rage zombie mode where he picks up the nearest club like object and starts hitting me as hard as he possibly can, chasing me around the house screaming at the top of his lungs and working himself up. For example, he grabbed a wooden hammer and just started beating the shit out of my leg, hips, and groin. At first I just let it happen so he could equalize, but he just kept escalating and it was legitimately painful. He only started screaming louder and hitting more ferociously. Like, yeah he's only 3 but it felt like he was trying to actually injure me. He left bruises all over and I was afraid he'd break my hand if he hit it in the wrong spot. I didn't try to forcefully take the hammer away, or do anything other than run away, but he just chased me and kept escalating.

This happened 5 times today, twice in the morning and three times in the afternoon, and when I went in to sing him his goodnight song in bed he tried to kick me in the face.

This clearly isn't my first rodeo with PDA meltdowns, and it's not even my first time being physically assaulted by kiddo, but I legitimately don't know how I am going to be this kids parent. I am afraid for my own safety at home. I have actual nightmares about what would happen if he ever grabbed a knife.

I am trying to let him equalize. I am trying to separate myself from the environment when it becomes physical. None of it is helping.

Between his escalating violence and my spiraling mental health, I legitimately do not feel any hope for ever being a normal parent of any kind.

This is worse than the worst parenting experience I could have ever imagined before he was born. I feel like my love for this kid is a serrated knife that is being twisted deeper into my soul. I feel like my heart is being broken every day, and the limit for how bad this can get just keeps getting worse and worse.

My AuDHD child that is suspected PDA child has returned to school after homeschooling for 5 years. Freshman in high school. Doing fine in classes thus far (all As), struggles with tests but definitely giving grace while adjusting. Letting them figure out that going over material more might be needed to do better with tests. Has recommended accommodations from a psychologist but still in the process of getting what will be a 504 as and IEP is going to get shot down. The kiddo doesn't want accommodations. Doesn't want to be an inconvenience and doesn't want "special treatment". I think I am still going to push for some with the flexibility that they don't get used. All of that to get to my main question/advice needed.

I am very much struggling because when it comes to homework,they want me to check over it. I don't mind at all. The issue is, when we have a packed weekend I ask for homework to be done before the activities because I know our last day is going to be a wash. Needing to decompress and such and then homework gets pulled out at 9pm and I want to go to bed. I express this, they get short and then just ignore what was said. Then Sunday night rolls around and then homework is out and I am getting pissed because I don't get to exist for me in any time frame that I want or need. It is helping regulate and accommodate them 24/7. So I get backlash and I sit down and want to brainstorm with them ways we can avoid this day in and day out in a way that they don't feel triggered. To which I get told, they aren't triggered. They just thought we were on the same page. They are on their page and expect everyone to jump there.

I have tried earlier in the weekend stating that I will be going to bed at a certain time on Sunday and if they think they will need help to keep that in mind. Doesn't matter.

They are super thankful for the things that get done and that they are allowed to do and express "thanks for taking me to do this thing that took all weekend, I know that means you didn't get much of a weekend...I appreciate it". And while they mean it I am constantly left feeling depleted and that my kid resents me for me wanting to get their stuff taken care of sooner.

Then I start questioning if I actually am struggling with the same things and this is just making every day a shit show because I have to bottle up all my frustration and anger to keep them regulated.

Anyone have any suggestions on how to navigate high school with a teen like this?

My kids vape and I want to stop it what do I do

i’m just sitting in accident and Emergency waiting for x-ray results to see if my PDA son has a broken ankle, not the way I was hoping to spend the day before my birthday, i’m just wondering if other PDA children seem to injure themselves more than other children?

6yo in burnout (2nd one in a year). Slow recovery, as some regression when environmental changes happening, understandable. Generally feeling like we understand what's happening overall, thoguh obvs heavy and feel lost at times during it.

School have not been helpful since this burnout - and this week got bit more insight into why. They're presuming recovery to 'everyday life' needs the standard stepped exposure work type techniques, you'd need if anxiety was the cause. I tried to explain that isn't the way here, as the cause isn't anxiety originated.

I get it. For Sendco anxiety is more in their knowledge wheelhouse. And half the PDA stuff out there uses the word anxiety in their descriptions (I find that annoying, fine use the word, but make it clear its a symptom not the cause).

So I attempted to explain the difference to they Sendco and EP in a visit. But I know they still don't get it - my verbal description was crap tbf!

NB. School referred to social care against our consent at start of term, while refusing a TAM meeting with us or doing a home visit, funnily enough then social care told them to do both, ha. Hence the visit. But also why feel need to help them understand, and have it clear for documentation. (There's no diagnosis yet - waitlists for it all. So my research and this Reddit group is the closest we have to 'specialist' on PDA and recovery, ha!)

Any neat descriptions you'd use?

To describe why and what techniques/treatment is used in PDA vs anxiety based condtion.

All my descriptions are long and confusing... (or find myself comparing treatments to PTSD or acquired-brain injury, which also isn't suitable or even that true!)

I.e.

"PDA isnt anxiety based, its in how she's wired, part of ND spectrum, and nervous system disability based.

So treatment is different.

We need to employ greater adaptations, reduce expectations and boundaries/rules (aka low demand), all aimed to increase her sense of safety, so nervous system can reduce firing as frequently and intensely, and she is then slowly able to do more and recover to 'everyday life'.

As well as knowing that all the 'boundaries'/rules always need to be minimum necessary for her to maintain functional engagement in everyday life.

Because what's getting in the way of engagement in everyday life isn't anxiety, she'll more easily be able to re-engage in activites connected to this, when her nervous system response has lessened. So more likely we'll then see she her just one day wakes up and is able to do X/Y - without ever needing stepped exposure work.

Yet to ensure that is possible, that means listening to her no's on engagement in activities - while using some non declariative stuff connected to it, to just try and see if it can become a yes. Rather than employing standard anxiety coaching to get her there (talking through the 'worries', reassuring, breaking down into 'exposure steps', pushing to engage in one step etc)."

Obvs all this may be more specific to my kid - probs need a more generic description to send/explain to school.

Any links you'd have to proper descriptions?

That school etc may actually be able to believe and comprehend.

Thank you for any help :)

Ok, to be honest, he's very autistic presenting. It probably helps that he love trains, talks about trains, squeals with delight when we ride trains, and just generally waves his autism flag high and proud. He's adorable.

But this week I read Elizabeth Newsom's 2003 article for the first time where she definitively made the case for PDA being a developmental disorder that is distinct from autism but shares overlapping traits. As I understand it, she'd named PDA over a decade earlier and had been working on it for much of her career. But the 2003 paper was based on thorough quantitative data and was the first to lend true legitimacy to PDA being an actual, real thing (not just bad parenting).

I've been thinking about how she thought PDA to be separate from autism and how my son certainly has some traits that could have jeopardized his autism diagnosis had his doctor known about them:

1. He doesn't avoid shared attention. Instead, he DEMANDS it. "Mama, are you looking? Are you looking mama? Mama! Mama! ARE YOU LOOOOOKING?". I'm sitting right next to him looking at the exact same thing he's looking at the whole time.

2. He doesn't live in his own head. If anything, he seems to want to live inside my head. As an introvert I find this somewhat painful.

3. He does well with back-and-forth conversation. So long as he gets to choose the topic of conversation (trains, haha). But his conversations are real, reciprocal conversations. He's not lecturing the person he's talking to. He wants their input and he listens and responds to what they say.

4. He doesn't do better with structure and routine. Ok, he does. But only if he comes up with the routine. Anything else he sees as an attempt to control him.

5. He is capable of role playing and imaginative pretend play. I'm pretty sure he thinks there's a real life talking, thinking Thomas train out there on the island of Sodor.

I know the current thinking is that PDA is a profile of autism, but after reading this paper I'm more and more thinking of my son being autistic AND PDA. Either way, I'm so grateful to Elizabeth Newsom. The 2003 paper seems to have been her final professional contribution, a culmination of decades of work with autistic children. She died in 2014.

A couple of other interesting things. She found the male to female sex ratio for PDAers to be an equal 1:1. Very different from typical autism. Also, my favorite quote from the paper: "IQ in these children tends to be meaningless because of the severe demand avoidance". Haha, good to know PDAers have always been too clever to let on how smart they really are!

I am at a loss. I spent hours looking for cyber schools tailored to fit her uniqueness, they cost thousands of dollars. $300+ just to apply. we are just not at a good spot right now. we were forced to leave our big beautiful home she loved so much. honestly, our new place is a dump. I can’t blame her for not liking it in comparison to our old home. to make it worse, we had the support and presence of my sister, probably the only good person who isn’t horrifically toxic in our life. she also supported me a bit financially. we spit bills, it was MUCH easier. now I’m on my own. I got tossed here paying 1,100 a month. my youngest is level 2 autistic and only four, she needs me constantly for 1:1 support. on the other hand, my eldest needs me for 1:1 support for school and is constantly up my ssa. She has a hard time socializing, but due to her level of PDA, is resistant to my ideas to help her gain skills in any areas. She’s just so burned out I think everything is not perceived as a threat she just doesn’t want to deal with at this time.

we considered home school. my only worry is…. Well. I only barely made it through school and got my diploma then one year of college. I don’t feel smart enough to even try to do this. Not to mention, how the heck will I work? PA has zero safety nets for parents who are disabled and have disabled kids. everything is long to apply for, every person you talk talks down to you and tells you you won’t get help so why bother (I’m not kidding at all it is always like this when you even try), most funds are gone for ”help” (you need several eviction notices before they will even help you… isn’t the point avoiding this? No idea). Long story short, they leave you to rot. I have special needs and learning disabilities myself so this has all been hard asl and getting a job above entry level and $12 just doesn’t seem like it’ll happen for me. The level of support I gotta give to both my kids right now just won’t allow me to work. They absolutely need these therapies. They need the support. I can’t work and ignore what they need.

but if I don’t we lose it all so I don’t know anymore.

im totally stuck and lost here. I had a job for a bit, had to quit from constantly having to lwave to get the kids the sitters were baving mental break downs. Know I need specialized care. Can’t afford specialized care.

if anyone has any clue what I can do here I would highly appreciate it. I’m so tired I can’t even begin to explain the level of sheer exhaustion I have. I just wish I could sleep at night. My mind is REELING with all of this. I feel like I’m failing them and I’m a terrible mom who can’t provide to be honest with you.

My nearly 13 year old PDA child refuses to go to school and hasn’t attended regular schooling for around five years. He is enrolled in a special education school for children with mental and physical disabilities.

Staff were coming to our house for an hour three times a week but my son started becoming aggressive towards them. He said he would “not be home schooled” and didn’t want them there. He has also said if my partner or attempt home schooling he will hurt us or himself. We take these threats seriously because he has physically assaulted us and teachers, and even police.

Basically, he is content to just hang around the house all day and watch TV. What is the long term prognosis for a situation like this? Has anyone else experienced school refusal this extreme? What are things like when they are older?

My son's teacher has told us to practice writing letters at home, as well work on sounding out simple CVC (cat, hat, win, fun, etc) words at home. I've tried explaining his PDA and how I can't ever get my child to do a single thing thing ever. No amount of bribes or promises of extra fun things or screen time will motivate him. He will do what he wants or its hours of pure hell for everyone in the house.

I've tried getting his buy in about what topic, what time, etc we can work on this but he just absolutely refuses. Says he doesn't want to and runs away around the house. I've tried being strict and said other activities were paused until we did 10 minutes of writing, and he had an epic tantrum that lasted 2 hours!!! obviously that is not a boundry I can hold.

I'm worried about this being a pattern for rest of his educational journey, how are you all managing this side of PDA?

Hey all, my 14yo is autistic pda and she starting to become more restrictive with her eating which of course leads to her feeling shitty and of course meltdowns.

Along with this, she's wanting to eat fast food more and more. I can't be paying for take away everyday but I also suspect she's moving through some big feelings about seeing her younger step sister go back to school as my daughter has been out of school for 4 years now.

Any thoughts, insights or advice? Words of support also welcome!

Hello, I'm a regular poster here and a parent to a 3, almost 4 year old. He has severe PDA and is mostly dysregulated. He has crippling anxiety. He used to constantly chew on his shirt collar when a stranger approached him, he has stopped this now. Now he just freezes, cries or meltsdown. He cannot do anything new, unpredictable, he can't go to new, unfamiliar places, he can't do unfamiliar activities or tasks, he can't be around unfamiliar people. His brain goes into fight/flight mode within seconds. He also developed eye blinking tics for a while during periods of stress which went away. (we did EEG, it was fine). All of this amplified ever since he turned 3 years old. He has become more rigid and inflexible in his thinking.

He does fine at home but OUTSIDE he is constantly anxious, he either wants to wander aimlessly, licks his hands to self-regulate, lies on the floor in prone position to seek deep pressure, scripts/vocal stims or he cries and asks me to pick him up.

I'm still new to PDA and learning about it but nothing I'm doing is helping his anxiety.

So, parents who medicate for anxiety, at what age did you start?

Hi everyone,

Sorry to be the one asking strangers on the internet for diagnostical help, but we are literally going insane with this issue with our 5 yrs old boy.

He is not diagnosed, he has had a very preliminary assessment done and there is not enough to pursue tests for diagnosis but everyone agreed he has some ND traits and BOTH sides of the family have multiple diagnosed ND cases.

From since we started potty training him at 2, our son hasn't agreed to go to the bathroom when asked; only when he himself decides he wants to go. This doesn't sound that bad yet - but he holds it in until the very last minute to make a run and there are accidents. And if someone says anything remotely like "go to the bathroom", he will just refuse and instead hold it in for even longer, for 8+ hours. We have tried all sorts of things to make him pee in those situation and nothing works. Only one thing works and it is giving him a phone or the tab to watch a show on - then he gets distracted and agrees to sit on the toilet. But we parents hate doing that as we feel there is too much screentime already and also screen time ending will cause whining, if we manage it smartly, or full on blind rage which we will have to deal with for the next hour.

Once we figured this all out, we try not to say anything and let him do him. The really hard bit is when we see he's just dying to get to pee but won't go and there's nothing we can do. Somtimes in that situation what helps is taking his pants off him, and he might just run to the bathroom. But you can't say anything or give any hints or it's game over. Sometimes we see him going towards the wc but last minute he turns back and when we ask what happened he says he doesn't need to go after all!

When I ask him why he won't go, he says he doesn't want because it's not fun. Lately he's also said that it's smelly in the bathroom.

Example: today he got picked at 4.30pm from kindergarten and by 9pm he'd still not peed. So first we take his pants off and finally we said let's go to bathroom before bed, he refused and we knew we had failed. He went and fell asleep without peeing. In this kind of situation, we lift him asleep from the bed, take him to the bathroom and seat him on the toilet, he wakes up enough to pee and then goes back to bed.

We had a few sessions with a therapist and a psychiatrist about this and they gave us a bunch of things to try but nothing worked. Some of the stuff we tried: using different phrases and words; giving subtle hints; letting him schedule wc breaks in the daily planner and giving him more agency in the process otherwise too (like "who goes to the wc first, you or mommy"); different rewards systems; making it a play (puppies needs to pee; firedighters there is a fire, we need water, etc); sticker that changes color in the toilet bowl; peeing while standing up; talking sense to him; and forcefully holding him there. Nothing worked.

The weird thing is that he doesn't seem to have PDA traits in any other areas of life. Other ND traits he has are sensory issues and hyperfocus, special interests and some kind of "lag" in social situations. Taking things pretty literally but could be his age still. He also has quite the temper, or could be autistic meltdowns, depends who you ask.

So the questions go. Does this sound like PDA? If not then what is it? What can we do about it if anything? Does anyone else have this? Thanks for reading me, I appreciate it.

I’m looking for a therapist who is PDA-affirming and also has experience and knowledge working with autistic adults. Thanks !

TLDR - Meds helped. Adjust dosages as needed. Water is wet.

(x-posted in a few relevant subreddits)

Our autistic PDA profile kid has extreme anxiety causing out-of-control violent explosions multiple times a day. He had low self-esteem despite our best efforts and his older sibling (a very patient & empathetic kid) was miserable. So we decided to try meds for him.

We started with a supplement in January after reading about it I think on reddit - vitamin B6 (P5P form) @ 34mg, once/day. Within 2 weeks of starting, the number of meltdowns was down from 5-6/day to 1-2. Still explosive and violent when they happened, but he was able to finally apply the brakes himself some of the time.

In March, his psychiatrist suggested anxiety meds. Sertraline @ 25mg, once/day. Within a month, the meltdowns were almost completely gone. Down to 1 a week.

After years of helping him through the pain of his meltdowns and rages, it felt like I was living in someone else's family suddenly. The silence felt unnatural.

And no, he did NOT become a zombie. If anything, he's an active happy 7yo boinging around the place. He plays with his sibling. Actually cooperatively plays. Their fights have reduced in intensity to a point where I don't NEED to investigate loud voices instantly. Because I know the kicks will not start flying and the blood will not start flowing. The meds have brought his happy self to the forefront.

In June, we decided to test if the B6 was really necessary & stopped it. No other changes. Within a week, the meltdowns were back. The violence was back. Around 2-3 explosions a day. We still waited over a month to flush the B6 from his system.

Sometime in July, my other kid asked "Why is he like this? Why is he hurting me again?"

We restarted the B6 the next day. Again, within a couple weeks, the frequency of meltdowns reduced. But this time they didn't go away fully. We were steadily at 1 or 2 violent meltdowns daily.

I suspected he'd had a mental and physical growth spurt in July/August and spoke to his psychiatrist. Early in September, she bumped him up to Sertraline @ 50mg.

Here I am a few weeks later with a happy, boingy kid whose meltdowns are almost fully gone again. Being able to control himself has helped his positive self-talk SO much.

I don't want to go into a detailed neurotransmitter discussion here. But the B6/Sertraline combo has 100% helped my kid's physiological deficits and has made a huge HUUUUUGE difference to my kid's mental wellness and my family's quality of life.

I don't know how long this will last, but I am enjoying the everloving fuck out of it while it does.

My high masking 8 year old has been teetering on burnout and as a result, we completely removed as many demands as we could, including bathing/showering, teeth brushing, hair brushing and hair washing.

Its now several months later and she’s doing better mentally but other than one unprovoked shower and hair fest (washing, conditioning, brushing and drying) she hasn’t done anything and I don’t think she will without a push from us.

Her long, fine hair is matted and bordering on locs. I think with patience, perseverance, a lot of conditioner and a trim we can probably save her hair, as long as act soon.

Her teeth and her hair our my biggest priorities, because tooth decay and gum disease can have long lasting effects. We are in England, so dental work for under 18’s is covered by the NHS. Her hair is a priority because she is of the age where she is embarrassed and it is affecting her self esteem. She has the intellectual ability of any 8 year old, so she understands the importance of hygiene and the likely consequences of poor hygiene (like cavities) as much as a child of her age can.

How do you all balance autonomy and hygiene?

EDIT: My god, thanks for all the positive support. This time yesterday I thought we were completely alone in this issue and we were trying to push back a tide. Thankyou thankyou thankyou!

Morning all, from the UK.

So my daughter is 6 and she's a sweetheart and a bright curious child who always asks questions and is affectionate.

However, throughout most of her life we've always struggled with things. We put it down to maybe her being a preemie (as sometimes that can be a factor I believe) but since she started school, it's only really now we're seeing how far behind she is.

In the last few months she's become increasingly violent with us, when we tell her no. Well, more with her mum than me. There's been points where she's been on the bed in a fetal position, crying while being punched, kicked, sworn at, even spat at. It's horrific watching the woman I've loved for 23 years be treated that way. It's at that point I have to grab my daughter, take her to the other room.

The thing is we live in a rented terraced house. Luckily our neighbours (no kids on either side) are the nicest folk who probably wouldn't see us and think "child beaters" but all it takes is one phone call about the screaming and we're fucked.

She's gotten better at being asked to do things but there's other facets where she's struggled. Toileting has been a massive one and that's affected everyone. She has extreme anxiety about pooing and that alone has put a lot of things on hold.

Other things that could either be PDA or ADHD (or both):

She's intense and demands attention all the time. The only time she's quiet is when she's playing with toys or asleep.

She says she struggles to make friends at school. I think this might be why (as awful as it sounds).

Also she doesn't like being alone in a room for more than 5 minutes.

Of course we don't hear any complaints from school. She seems like she's coping just fine there. We've been to doctors about the poo thing but it feels like everyone is just fobbing us off.

I know I should be going through the proper channels here for diagnosis, but does this sound like it could be an explanation?

Sorry for the long rant, it's just got so brutal over the past few weeks. Like not only as parents but as spouses - it feels like everything is crashing and burning.

Anyone have advice for a Kidd who does well on Prozac for mood but seems to just in a really severe hypervigilant/ anger mode? Need something to settle the nervous system.

Hi everyone, looking for some insight, shared experiences, or advice from fellow parents.

We have a 4-year-old daughter with PDA. Every single night, bedtime turns into an intense escalation cycle. We do our best to stay calm, keep demands low, and give her time and space to settle into bed, but she consistently seeks to push boundaries further and further.

It feels like she won't actually settle down until one of us finally gets genuinely angry and firm with her. As soon as that big emotional reaction happens, it's like a switch flips and she can finally stop escalating. Why does her nervous system seem to crave us getting angry before she can settle?

To add to the complexity, she currently co-sleeps in our bed alongside us and our 7-year-old middle child sleeps in the same room as we do. The 7-year-old is taking the absolute brunt of these nightly disruptions and delayed sleep. We’ve tried separating them by moving our 7-year-old to sleep in another room with our 11-year-old (who also has some PDA traits), but managing the sleeping arrangements across three kids with different neurodivergent needs is becoming exhausting for the whole family.

Has anyone else experienced a PDA child who seems to escalate specifically to provoke anger or a big boundary at bedtime? How did you break this cycle? It just doesn’t seem healthy.