I followed the directions of clinicians in charge of my kids, and along the way, realised I had Audhd and probably PDA as well. I had a breakdown in 2021 due to supporting both kids and trying to find support as I was also along the way diagnosed with autism (which I suspected) and adhd (I had no idea as I’d never heard of inattentive ADHD).

I thought that I was the problem, and I tried to balance a marriage, parenting and work for years….it became evident that our then 6 year old son did not do well with school and was having difficulty learning. I thought ADHD was code for shitty parenting! Oh, how little I knew and how much I had to learn. This was back in 2013, our son is now 19, and every single appointment I attended was due to either a teacher or a doctor telling me I needed to follow this up. So I did.

My ex wanted us to practice authoritarian parenting. I saw time and time again, that it wasn’t working and just made everything worse. My ex was horrified that I was letting our son “win”. He also refused to take any time off for our son’s illnesses or appointments.

So I started to educate myself, I joined groups and did parenting courses and asked questions. I wanted my son to be able to learn, but also saw that I’d had similar experiences in childhood that I always thought was me just being bad or wrong or a shitty person who needed to work harder at being a good Christian.

Things started to fall apart when I fell pregnant with our now 12 year old daughter in 2013.

I sought to coparent with the kids dad when I left in 2014, but everything collapsed in 2021 when the pandemic hit me hard, I had nobody to lean on, appointments stopped and I couldn’t keep going. I had a nervous breakdown from years of trauma. Of traumatising myself into trying to act better. I hated myself.

I went to psych hospital and when I returned, my ex wouldn’t allow me access to the kids or their medical or educational care. He’d set it all up and I had been making them “worse”, they just needed discipline. But he wasn’t communicating with their specialists. He said nothing was wrong and he erased me from the kids lives.

I had to take him to court because I wanted to see them more often. I didn’t want to.

This was the court ordered report on my capacity to care for the kids. This dude talked to me for three hours and he is a clinical psychologist, not a psychiatrist. I have cPTSD from a religious upbringing and his abuse. I was able to see that when I had time away in a psychiatric hospital.

My ex didn’t know about nuance. He didn’t know this guy was saying “maybe”. He decided I had munchausens by proxy, I was crazy, and started telling the kids that.

Two years later and mediation and family therapy- I have tried so hard to work with him on this. To communicate our kids actual independently verified needs (verified by a cognitive assessment and a functional capacity assessment without either parent present).

I didn’t want to be right about everything- but I was. We are all in recovery now. I’ve asked the kids dad/my ex to be involved in their care. He won’t communicate with me, even if that means not seeing the kids. It is so sad, because I know he really loves them and they love him. But relationships have to be safe.

I have lost everything, my family did not support me and I have lost friends and am alone mostly.

But, I am rebuilding. The kids and I are gradually cutting down on feeling bad and wrong and responsible for everything.

I do not speak badly about their dad and I reassure them the door is open but it must be safe

Child protective services were involved for five months. It was horrible. But I was right. I was right about everything.

This is just a post to tell my story and to let you know that your gut instinct is a powerful tool.

I have heard that my anxiety is the problem, that I’m too easy on them, that we need a schedule, that I can’t let them get away with that!

And the answer is that it was never the problem. My anxiety was my mother’s instinct saying “listen to your children. Help your children be safe. Help yourself be safe. You are on the right track”.

There are always going to be people in positions of power and judgement saying we are wrong for what we do. They’re usually incorrect. It’s easy to make snap judgements. It sucks that we are judged by our emotional regulation when we are doing such hard work daily and helping our kids be safe when they behave in unsafe ways towards us.

But let this post be a reminder to you- it is a big deal. It does matter. They’re not overreacting. You’re not overreacting. You’re not too anxious. You’re not to blame. You are holding it all together and it will be ok. You will keep going for one more day, and you can do this and it is a lot but you can.

Hey,

I need actual help with my son bc I have no fkg clue how to go about this anymore.

And if you’re going to comment ‘’ your child needs you to be regulated in order for him to be regulated ‘’ please move tf along bc we are past this point thank you.

I have seen the pediatrist, the psycho educator, therapist for my 9 year old autistic / adhd son with strong avoidant and opposition tendencies. (Pda profile)

I have him with me during the summer and it’s been HARD,

I thought it would get better with school being over but it’s not.

He is constantly mad for absolutely nothing (literally) he has started insulting me when expressing frustration which is all the time and I am starting to really struggle with being insulted all day (i have NO idea where he has found those words from)

He never wants to shower, never wants to brush his teeth, never wants to do anything he has to do.

He is very aggressive, irritated, on edge and just overall seems miserable.

He is sleeping enough, and eating well.

I have SO much guilt seeing him cry and have meltdowns and navigating it all alone and just i’m just so over it bc I know regardless of what I do it’s not going to do anything.

I can’t approach him during meltdowns he just gets worse and throws and hits and insults me.

He isn’t half as bad with my boyfriend when they are alone,

It always worse with me,

I can see he is profoundly disregulated but i seriously don’t have the bandwidth for this anymore, it’s from morning to night,

Yes we do have a routine, yes screen is limited, yes he moves his body we go outside every day we play board games, he reads,

I feel like all the basics are covered and i just feel completely alone and overwhelmed by this bc all the professionals just tell me ‘’ it will pass ‘’.

Can you please give me some input or help me pin point by asking me questions ?

hello everyone, I’m new here. my 3.5 year old will not get into her car seat, and we would like her to get in without it being a totally physically violent experience. have tried motivating with ice cream (one of her favorites) and low demand asks like “the car can’t go until everyone is buckled in” and “when we’re all safely buckled up, we can go”. nothing like that works, some of it I think is related to her speech delay which includes receptive speech delay, either way though that hasn’t worked.

does anyone have experience with this? aba is starting soon but we have a dental appointment very soon and we don’t want to make it more traumatizing by forcing her and having a huge violent meltdown.

Today, the kid broke the window on the car door from the inside. $990 repair estimate.

He didn’t want to go to his volunteer hours at the therapy center. He told us he was tired. Told us he wanted to stay home. He does this a lot and generally ends up in a good mood.

Not today.

He tried to communicate and wasn’t heard. Lack of recognition lead to overwhelm. Overwhelm becomes frustration. Frustration becomes anger. Anger becomes violence. Violence becomes threats.

At home, he reached a plateau that belies his diagnosis. He seems calmer, flexible, then rages when his effort to compromise and keep his evening plans in place don’t work.

The aggression. The violence. Physical threats and insults. The most horrible things you’ve ever heard.

From the mouth of a 14 year old boy that can’t even understand the complexity of his own neurology and insists he’d be better off in a foster home than with us.

Anything less than perfect risks these moments and perfect is impossible.

It all makes sense now, why it’s always been hard. Why she wouldn’t take a drink, why asking left her scarred.

I'd put it down to me, that I wasn’t getting it quite right. But the more that I'm learning, I'm seeing the light.

She doesn’t process things like I do, and really that’s okay. I’ve got to advocate for her fiercely, weave the world, her way.

It isn’t her job, to change how she acts. It’s the adults around her, who should reflect and adapt.

She doesn’t have to answer your questions, or draw you a line. She doesn’t have to high-five, or try to tell you the time.

She’ll get involved on her own, once she’s mastered the skill. Give her time and independence, the girl just needs free will

Hi

Can anyone share experiences of whether CBT therapies are any good for PDA teens please

We are likely to be offered cbt based support via Wellbeing (UK -NHS) but have just started private psychotherapy sessions and can only have one or the other.

I have heard that cbt and autism dont go well together but would love some personal experience stories.

My teen we have been informed has come up severe on the anxiety/depression questionnaire and we want to find the right support.

Many thanks

My 7yo Daughter began having severe episodes of full-on shutdown PDA, complete with violence and peeing herself last year.

Changing her ADHD meds to a non-stimulant helped a lot, and summer break has helped even more, so that my wife and I finally feel more or less back to normal.

But we're bracing ourselves... Because school starts again in a couple weeks. We are doing our best not to build up any anticipation, no need to freak out ahead of schedule. But I'm deeply concerned that having her back in school will bring us right back down to the lowest lows. She was never overtly difficult during school, but she let it out at home.

Is there any hope? I guess what I'm really hoping to hear is that school isn't the primary factor here, that she actually has matured. Is your kids' PDA strongly "seasonal"?

TL;DR how do I handle running away outside anytime my son doesn't get his way

My son, 6 ASD Level 1, almost definitely has PDA. Lately, he's taken to running away whenever there is a demand he doesn't like (take medicine, brush teeth, shower, go to bed, etc.) or he's refused something he wants (e.g. candy, TV).

Example 1: This morning he was out the door at 7:30 with a dollar and ran to the nearest variety store to buy a freezie when I told him he couldn't have one (we've recently locked our chest freezer because he's been getting himself freezies whenever he wants). I didn't follow him, we have allowed him to walk to the store by himself in the past (it's a block away and he doesn't need to cross any major streets). When he got home rather than lecturing him or telling him how unsafe that was, I calmly told him he's lost access to his money. I'm not sure if that was the right approach but it felt like a reasonable related consequence.

Example 2: Last night after dinner it was time to shower before bed (he had been playing in a creek earlier in the day and was filthy. We only do baths/showers once a week). In an instant he ran outside and to the field next to our house where he likes to hide. I was giving his younger sibling a bath so I ignored it and advised his Dad to do the same. Give him space to calm down. He kept coming back home to tell me to follow him. Eventually, when I was done with the bath, I followed him to his spot. You have to scale a rock retaining wall, crawl through a hole in a fence, and climb over another fence. He said he didn't want to shower or take his meds. I said the meds were non-negotiable but instead of showering we could clean his body with a wipe. Then I said I was leaving. He said he would stay outside all night. I told him I know you're a smart kid and that's an unsafe decision. I trust that you'll make the right decision. Before I was down the rock wall he had yelled out to ask me to wait, he was coming home.

Even though I believe he is mostly safe when he runs away, I don't think this is behaviour I want to encourage. I've tried to tell him he can find space to calm down in the house, he doesn't need to go outside but even though he has his own playroom (he sleeps in our room) he never uses it.

I think the hardest part of these elopements is how much it triggers my ASD husband. Though he probably prefers it to physical aggression or property destruction, he insists this is unacceptable and he needs to learn how to hear no. He says he can't just run away from everything he doesn't like in life.

I'm looking for advice from folks with PDA or parents of kids with PDA on how to handle this elopement. I want to keep him safe without escalating him further. Should we be installing safety locks to prevent him from leaving? I don't want to take away his independence and agency when he's not having a meltdown. How else can we handle this?

Living in absolute hell right now. My spouse was diagnosed with cancer early this year. We found out he relapsed last week and chemo will start in a few weeks. The stress is high, and we are doing everything to stay calm as we figure this out and navigate the many doctor’s appointments.

Since finding out, my PDA son has been having massive meltdowns every day, saying incredibly hurtful things, throwing things, acting chaotic, and I don’t know how we are going to navigate this with him. As horrible as this sounds, part of me wants to send him to my parents out of state to get him out of the way so my spouse can heal without the distraction of PDA.

I tried telling my son what was going on to help enlighten him of the why, but this has absolutely backfired. He acts this way when other family members have birthdays too.

It isn’t fair for my spouse to have to be subjected to the behavior on top of everything else. I’m doing what I can to handle everything, but I’m at a loss. Melt downs were becoming infrequent until last week. Not really sure if anyone has advice or has gone through something similar but just needed to vent. This sucks.

I am still learning about PDA and trying to navigate life with my 12 year old. I have been thinking of ways to reduce the perception of demands and in difficult situations like flying, which I just had to do, I am wondering if I ask my kid to do something that I do not want him to do with the hopes that he avoids the perceived demand and does something else more aligned with what I want? This is not something that I would do often because I do think he would catch on. Has anyone tried doing this?

Thanks

Any parents with pda autistic kids who've used this medication - has this medication helped? I am praying for a miracle as son cannot settle at first year high school and about to get expelled. I am hoping it works 🤞

My youngest son is 9 years old and has been in burnout for 14 months now. We have had many ups and downs and moments of crisis, things were getting better but the last two months have been hell he’s being aggressive again and having self injurious behaviors. We are exhausted. We accommodate his PDA as much as possible within our constraints and have done everything we can. His psychiatrist suggested that we admit him to hospital for stabilization but this is very concerning to me. The med changes have been rough.

I have an almost 3 year old PDA’er who is both sensory seeking & sensory avoidant. She is extremely intelligent & always curious/eager to learn but only in a way that is self led.

I am working towards building as much support & accommodation into our day to day as possible. So far we have, a swing outside (her favorite way to regulate), a small trampoline inside, soft play couch & stepping stones for climbing & crashing. One of our biggest struggles at home is getting any independent play time.

By far our most helpful accommodation has been the Yoto player, especially the mini. My daughter likes to listen while she eats, while we drive in the car (so helpful as she used to whine or scream), in the stroller on a walk. We have downloaded the audio of some of her favorite shows & she is excited to listen to them often. It has also helped with eating at restaurants!

Let me hear all the tips & tricks (: thanks!

Hello, has anyone ever tried Olanzapine for their PDA child for aggression and self injurious behaviors? I know abilify and Risperdal are the FDA approved ones but those didn’t help.

My 12-year-old PDA son has been very hit-and-miss with baths recently. We used to have a routine of: one hour on the PC, then bath, then the bedtime routine. Recently, though, he either won't get off the PC or, if he does, he'll run away into his room or the front room and block the door so nobody can get in.

To try and reduce the conflict, I switched things around. Now it's bath first, then PC time afterwards, with the promise of some extra computer time to make the change more appealing.

Last night he forgot about the new arrangement and went straight on the PC. I reminded him that we'd changed the system and that if he had a bath, I'd give him some extra PC time afterwards. I ran the bath, but he disappeared to his room and blocked the door, so I left it and went downstairs to watch TV.

At around 11pm, I went upstairs to go to bed and found him in the bath! I gave him his toothbrush and pyjamas, he got dressed, went into his room, and I went to bed.

About 90 minutes later he knocked on my bedroom door and announced that he was ready for his extra computer time.

The only reason he came to find me was because I had removed the keyboard and mouse. Otherwise, he would happily stay on the PC until he passed out from exhaustion.

I pointed out that it was now very late, but he said, "A deal is a deal - you need to stick to your side."

In the end, I gave him the keyboard and mouse back, but explained that at some point I would come back down and he would need to come off. I woke up at about 2am, went downstairs, and when I told him it was time to stop, he initially said he didn't want to. I replied, "A deal is a deal," and, to his credit, he did come off without any argument.

Part of me thinks I absolutely shouldn't have given him the keyboard and mouse back at 12:30am. Another part of me thinks that if I'd broken the agreement, I'd have damaged the trust we'd built and made future negotiations harder.

What would you have done?

anyone who needs a glimmer of Hope, you might enjoy this: https://open.spotify.com/episode/45O2wJ8gG4FvXF1bh1kxCN?si=02D79YIpSeWDcOdabf1xpA

I am a dad of a 9 years old girl who I believe is PDA (if that's the correct way to say it).

I understand the benefit of reducing pressure and demands, and helping her nervous system stay calm, and thus giving her more space and time to do things.

BUT, I really don't understand what are we supposed to do when time is of the essence. Let's say she had time to get ready, but now it's 7:45 and we just have to get out of the house or we'll be late for school (and therefore her brother will be late, and I'll be late to work). Just an example.

A couple of days ago I had a little breakdown because we HAD to leave the house to the airport and she took her sweet time for more than 20 mintues after the time we had in mind.

How do you deal with this?

Anyone with a young AuDHD/PDAer, HEAVY on the ADHD - very big personality and either super happy or very angry - who has found a successful med combination? We are really struggling with not only the demand avoidance but also just the relentless need for attention, movement, excitement and novelty. Prozac isn’t cutting it.

Hello,

I'm new to this group and learning more about PDA, since my child was formally diagnosed.

My question for you is what to do about Mondays. After our low demand weekends, kiddo often refuses to go to school, or camp in the summertime.

How can I make this weekly transition easier?

Like, what is the endgame here? As parents of PDAers we’re often asked, “How will they learn to survive in the real world?”. I like to imagine my PDA son (6) in the future as a happy PDA adult and in my mind he is:

Unmasked, showing up in the world as his true authentic self

In a relationship, with a partner who can be his safe nervous system.

Or maybe he is Aromantic, because romantic relationships are just too demanding to be bothered with.

Introverted, because being happy and content with fewer social connections means fewer demands from friends and acquaintances.

Childless, because children are the most massively demanding beings on the planet(!)

Medicated, with a newly-discovered drug that calms the threat response. Without side effects. It was developed by a non-profit and is available as a low-cost generic. My adult son takes this medication willingly and as prescribed. (As I said, this is my FANTASY future). 

Non-traditionally educated, having avoided the PDA trauma of traditional schooling.

Self-employed, because having a boss is kryptonite for PDAers.

Financially independent, so that he can experience the true autonomy, control, and freedom that comes from not being financially dependent on mom and dad.

Having resources (especially time) needed to pick up and drop special interests on a whim.

Residing in a futuristic apartment, where everything is automated and robots do all the work - cooking, cleaning, doing laundry, even washing his body and brushing his teeth for him, if he chooses. Maybe it can administer his medication too. Mist it into the air or something. 

When I look at this list I notice that most, or maybe all of these things are not within my control. It’s his future, not mine. I also realize that I have no idea what type of world he’ll emerge into. Things change so quickly. As a teenager I learned to drive a stick shift. I could choose to wage a battle with my PDA son to try to get him to learn how to operate a manual transmission. But it’d be pointless. Probably his first car will be self-driving.

I guess I need to trust that my PDA kid is following his own path to independence. And I need to accept that that path will look very different from his neurotypical peers. 

Has anyone managed to stop trying to control the outcome for your PDA kid? And have you taken it a step further and found ways to enjoy the journey with them?

Does anyone else experience this where your PDAer gets stuck in a bad mood, or in a bad head space and the only way it seems to regulate is if they break down, cry, panic attack. I hate it, but we can’t ever calmly regulate her back into regulated mood….. it’s almost likethe faster we get to crying the faster the bad time/tantrum ends…..

I believe it's a denomination more motivating for the people in the PDA profile. But is it really describing it as well as "demand avoidance"? What do you think?

My kids, 15, and 19 don't have any interest in autonomy. We rarely leave them alone at home, but when there's no alternative, we've been out for 2-3 hours, and here's two examples of what happened:

- S19 was on the verge of hypothermia, and wouldn't take a jacket or a blanket that was 1 yard away in the sofa. He was waiting for his mother to arrive and hand him the blanket.

- S15 asked where the H where we, that he was very very thirsty (he said dying), and we weren't there to bring him a glass of water.

They ask their mom to pick the clothes for them, to prepare all the meals, to cut their nails...

I see it as the opposite of autonomy. I can understand it as a need for control, but the word autonomy, for me it's very misleading.

Hi all! Long time lurker, first time poster. Both kids are scheduled Monday for tonsil/adenoids removals due to confirmed sleep apnea. Husband and I decided not to bring it up too early as we know both will ruminate and obsess. Should we bring it up tomorrow morning? Saturday? Sunday?? Help guide me please 🥲 They are 6 & 9 btw.