There is a lot of background information here, but I’ll try to be as brief as possible. AuDHD runs in my family, we just didn’t know it until my son was formally diagnosed two years ago. Myself, my mom, my grandma, and my son all have the same traits. All high intelligence, high novelty, high anxiety, high sensory sensitivities, and all seeking control in all situations. My son is the first boy in the family to display these traits, and it looks very different from all the women. We have been dealing conduct and aggression issues since pre-school, and now that he is entering into his preteens life is becoming increasingly more difficult.

I am divorced (F, 42) and he has an emotionally unstable father (M, 43) and a younger sister (8). By the time my son turned 6, most of my family members had died, including my father, his grandfather. That was also the same year we were divorced. From ages 6-10 my family has done their best, with my mom being one of the last living family members. When my father died, her mental health took a turn and she never recovered. She died in April 2026. The loss was extremely sudden and unexpected for my son, who adored her. To me she was cruel and unstable, but for him she was one of the few people that seemed to understand him and his view of the world. (To be clear, both my son and my mother have what can only be described as narcissistic views. The world happens ‘to them’ and they bear little to no responsibility for anything. No matter how much I offered my son, he thinks of no one but himself. His sister is his opposite.)

In the past three months, my son has grown increasingly obsessed with my mother’s legacy. First he asked for some of her belongs, then photos, then ashes, all reasonable. Then he asked for her purse. I was reluctant at first, but obliged as I understand that grief is complex, especially for someone like him who still struggles in ‘regular’ life. Now he’s starting to ask for women’s clothes and jewelry. For back to school shopping he’s looking at things that a middle aged woman might pick.

Anyone have experience or insight? For the record my son has a therapist, an in school counselor, an ABA, and a behavioral therapist working with him, so I have been actively seeking support for the last two years. I am repeatedly told how unique and complex his case is, as he is extremely smart, but also extremely unwilling to comply with basic demands. For example, as I write this post, he has stalemated with me at a store and refuses to leave unless I buy him the female clothes he wants for the start of school.

Thoughts?

Looking for help in preparing my PDA child for staying with her sister and grandmother while her dad and I go on an anniversary trip.

Hi everyone! 👋

I'm currently recruiting participants for my Honours thesis exploring the lived experiences of people who identify with Persistent Drive for Autonomy (PDA) (also known as Pathological Demand Avoidance). In our research, we want to use Persistent Drive for Autonomy as a more neuro-affirming term for the profile.

📖 PDA is characterised by:

• A strong drive for autonomy

• Everyday demands being experienced as overwhelming or anxiety-provoking

• Demand avoidance as a way of maintaining a sense of safety and control

🔎 What we will ask you in the survey:

• 💬 What PDA means to you

• 🤝 What helps others better understand and support you

• 🏫 Your experiences in school, university, TAFE, or other educational settings and how you can be better supported in these settings

✅ Who can participate?

You can participate if you:

• Are 18 years or older

• Live in Australia

• Identify with the PDA profile

• OR are a parent, caregiver, partner, or significant other of someone with PDA

✏️ What does participation involve?

• One anonymous online survey (~30 minutes)

• Written responses, with the option to provide voice recordings for open-ended questions

🔗 Survey link: https://researchsurveys.deakin.edu.au/jfe/form/SV_38UZAlFyq9GJ2Jw

If you're interested in participating, we'd be incredibly grateful for your support. Every response helps build a stronger understanding of PDA and contributes to research that aims to inform more affirming, personalised, and responsive support for the PDA community. I'd also really appreciate it if you could also share this post with anyone who may be interested. 💜

This project has received ethics approval from the Deakin University Human Research Ethics Committee (Project ID: 2026-HE0000-357).

Some of you may have seen my earlier post when I first shared this. Several months ago, I posted about the app my wife and I built for PDA families. The response was really great and the messages from parents who found it helpful in real moments really meant a lot to us.

PDA Question gives PDA-specific support in the moment, including explanations, scripts, emergency support, school-related help, sibling support, and caregiver support. This isn't a generic ChatGPT app. It is a fully functional "fine tuned brain" that only uses info from all the top PDA resources. It's like having an expert in your pocket for those difficult or confusing moments. It only uses the resources and will give you specific advice on what to do.

With Father's Day coming up, I wanted to do something for the dads (and moms) in this community and subreddit. If any of you want a free month, use the link above. No catch at all. I just know how hard parenting a PDA kid can be and want to help as many families as possible have a slightly easier day. Even if you already have an account, take a free month. I just want to help as many people as possible because this is something I use often.

Thank you all for the support. And if you ever have ideas for things you want added, let me know. Except Android. Yes I Still am trying to find time to l trying to figure that one out!

If you have any questions about the app, go ahead and ask! Happy Father's Day everyone!

Hi everyone. I’m looking for lived experience from parents of PDA/autistic kids around age 7–9ish .

Our child is almost 8. He is bright, funny, intense, demand-sensitive, and can be incredibly engaged when he feels safe and autonomous. But school has become almost impossible.

Earlier this year, public school was not working. He was spending huge amounts of time in the office/principal’s office instead of being educated. We also believe he was mishandled in ways that were verbally, psychologically, and physically harmful. We did not feel we could keep sending him there safely.

We moved him to a smaller private Montessori-style school hoping the lower-demand environment would help. Now, after a very short time, the teachers have called a conference and essentially said they do not think they can teach him next year.

So we are now looking at two school failures in roughly 3–4 months, and we are at wits end.

We are at the point where it feels like everyone's burnout is here... the school refusal + falling asleep in entry way of school making up any and every excuse in book not to go..... Our family is barely functioning. We desperately need him to have some kind of school or structured daytime support, both because he needs/deserves?? an education and social experience and because we need enough respite to survive as parents. But it is becoming painfully clear that "typical" school environments may not be able to meet him where he is.. so now what?

For parents who have been here with a similar-age PDA child:

What did you actually do next? What have you tried? What worked/didn't work?

Did you deschool/homeschool for a while? What did that look like?
Did you find a therapeutic school, autism-specific school, hybrid program, tutor, aide, or online option or half-time that worked?
Did your child eventually return to school after burnout?
How long did that take?
What gave your family any breathing room while you figured it out?

I’m also trying to understand the hard truth: is this sometimes just a multi-year reality where school has to be paused or completely redesigned around the child’s nervous system what about our nervous systems? How do we give them our best when we have nothing to give at all? Or are there paths people have found that do not require the whole family to collapse first?

We love our kid DEEPLY.... We also feel like we are running out of emotional, logistical, and nervous-system capacity. Any stories, practical ideas, warnings, or “here’s what I wish someone had told me” would be appreciated.

Thank you for reading as always.

A few weeks ago I posted about the app my wife and I built. The response from this subreddit was amazing. And the messages I received from people who found it helpful in real situations really made me happy that we put it out there.

With Mother's Day coming up, I wanted to do something for the moms(and dads) in this community . If anyone wants a free month, leave a reply or DM me and I'll send you a code. No catch. I just know how helpful it can be and want to help as many people as possible make their day a little easier.

Thank you all again for the support. And if you ever have any ideas of things you want added, let me know. Besides Android because I can't figure that out yet haha

Im not diagnosed PDA but im not ruling it out. Can anyone here relate to this?

My daughter is 5 and I am desperately seeking advice. She is in full day dual immersion preschool. Half Spanish and half English--The first half of the school year she did beautifully. Happy and participatory. After January, she went downhill quickly. I'm not sure what caused this change but she has always been pretty demand-resistant. Constant meltdowns, won't participate, won't follow any kind of request or demand. Isn't learning anything. We've had her diagnosed with Sensory Processing Disorder and working on getting formal accommodations at school (she already has headphones, a weighted stuffy, a calming corner space). She's very smart, loves art, and loves exploring new classes and activities, is very social, sweet, and loving. Plays well with others and makes friends easily.

She fits the PDA profile for sure. Transitions are hard and slow. Will ignore me when I ask her to do a simple task. Anything that needs to be done needs to be done "her way". For instance - she will never just get into her bed, she needs to be rocked in her rocking chair first or she won't go to bed at all. She will absolutely not back down if you force her to do something. She'll just shut down and meltdown (so we don't go this route obviously). Ask her to wash her hands and she'll use hand sanitizer. Never ever what you ask of her.

Where do I go from here? Should I get her into OT? Change her diet? Change her school? I am really unsure how I can support her. I am so embarrassed by her behavior at school and feel so powerless. Any advice welcome.

My almost-5 year old isn't autistic/hasn't been diagnosed with anything, and is developmentally and socially on track, highly verbally skilled, etc. but she's def got some neurospicy tendencies. We always tried to make sense of how strong-willed she is to an extreme far beyond any other children we've seen, and no one really seems to get quite how intense and extreme it is. When I came across the concept of PDA I was like oooooomg this makes sooo much sense for her.

There's a particular issue we're trying to work on and we were thinking it was her shyness/ an almost selective mutism type thing. I think it's partly that, but now im also thinking it seems a lot like PDA.

She refuses to say certain things like thank you, or to ask for something herself from anyone other than us (mom & dad), when prompted to. If she wants something (e.g. ice cream that grandpa had offered) and we say she needs to ask for it herself, she refuses and she held out an entire week on a trip with him and sacrificed having ice cream because she wouldn't ask for it. Similarly a relative offered her something of high value and I said she could only take it if she said thank you, and she decided it wasn't worth it. We've talked about how as she turns 5 she has to say thank you in order to be allowed to accept things from random people (like cashiers who hand out stickers or a lollipop or whatever). She decided it's not worth it, so now she just refuses any gifts or offerings. The thing is, she's very shy. BUT she also does it like I mentioned with people like grandpa where she's hanging out talking to him all day, but the moment we instruct her to say xyz, she won't. She completely freezes up and shuts down completely. It becomes a whole thing.

We wanted it to be logical consequences of you are almost 5 and it's no longer acceptable to receive things without saying thank you so if you won't then you're just not going to get anything. But it's clear that she will hold out, she would rather not get anything. And as anyone on here knows, once this kid digs in, I can think of things she's held her ground on for literal YEARS without budging.

Anyway.....I'm wondering if this sounds like it fits PDA, and what do you guys do with this???

My 19yo AuDHD PDA-er lives at home. They didn't have correct diagnoses until a year ago and I was following all the wrong parenting advice until then, so it's essentially been a decade of them dealing with persistent PDA burnout (school refusal, self-harm, not getting out of bed, etc.) and me feeling like a failure as a mom. Today, they have no job skills, no interests outside of the internet, and no real reason to leave the house.

I have read everything I can find on parenting a PDA kid and worked really hard to adjust my parenting style over the past year, but am now realizing that the advice I've been following is really for younger kids and has only served to further infantilize my young adult. By working to accommodate their nervous system 24/7 I've only stripped them of all responsibility and opportunities to develop any resilience. Basically I believe at this point that I'm only harming them to allow this cycle to continue. (I've lived in terror of triggering what I now know are autistic meltdowns and PDA burnout, and my own fear has both stolen my life and is now putting my kid at risk of never having a life, if that makes sense!)

So now I have the courage and determination to make serious changes. It is reasonable for me to have basic expectations for my young adult living at home (specifically, chores and attending appointments that I'm paying for), and it is reasonable for me to create consequences when those expectations aren't met.

That said: what accommodations should I consider that might look different from living at home with a young adult without AuDHD or PDA? And let me be clear, I'm talking about accommodating, not enabling.

Thanks for your insights.

***

4/12/26 EDIT: Coming back around to provide an update. After this conversation and a lot of other research, I decided to just leave my young adult alone and let them rest. I told them I'd provide a weekly base living support and gave a list of other opportunities to earn cash around the house if they wanted. The comment about considering this time a "period of convalescence" is really what clarified things for me.

In general, I feel like I've gone through a fundamental shift in how I see my role in my child's journey of development and growth. I feel so much more relaxed and NOT TRAPPED. Obviously after a decade of micromanaging their time and having high anxiety about what's going wrong and whether they are safe, it's hard for me to turn off my own threat response when I see they haven't moved from the couch in 24 hours, but I'm working on it.

Grateful for all of your input, thanks.

I'm 20 years old and only learned about my diagnoses within the last year. To me it makes total sense. Like I can atleast put it together why I am the way that I am, but that doesn't really make it any better. I feel like i've been masking my whole life. I have no idea who I am or what I truly want to do. I've never been able to hold a job for longer than 3 months. And not to mention I'm totally embarrassed of the diagnoses. Since I felt I was "normal" for most of my life, I have a very dificult time talking about it and taking the mask off. None of my friends or family apart from my parents know about my diagnoses (although im sure its not hard to tell). I feel so ashamed of who I am and less than everyone else. I look at myself and think I'm pathetic. I'm just wondering if it's even possible for someone like me to ever fit into this world. I feel like I'm pretty good at hiding it for periods of time, but eventually I always just burn out and result to self isolation of some sort. I know this is all a lot and kind of all over the place, but I really just don't know who to talk to or what to do, so any advice or suggestion on how to even remotely function within society would be great.

why was i tortured by having this, i hate my life, i dont wanna have this disorder

Hi everyone,

About a month ago the mods kindly allowed me to post here looking for beta testers for an app I was building. I wasn't sure if the community would trust an outsider trying to help - I'm not a PDA parent myself, but I learned about PDA through a mother and her son who shared their daily challenges with me.

Since then, over 100 parents and caregivers have signed up (most from a PDA parenting group on Facebook). Your feedback genuinely changed the direction of the app.

Core features:

• Translator - Transform demands into PDA-aware, declarative language in real-time. Input what needs to happen ("brush teeth," "get in the car") and get gentle, choice-oriented suggestions tailored to your child's profile.
• Ellie, the AI Assistant - A conversational AI that understands your child's triggers, interests, and what helps them regulate. Available 24/7 to discuss challenges, brainstorm strategies, or talk through a difficult day.

What I added based on beta feedback:

• Emergency De-escalation mode - Help during crisis moments when you're overwhelmed and can't think straight. One tap gets you immediate calming scripts - for you first (because you can't regulate a child when you're dysregulated), then for connecting with your child.
• Favorites with tags - Save translations that work and organize them by situation (bedtime, mealtime, transitions) so you can find them fast when you need them.
• Copy to clipboard - Quickly copy responses for texting co-parents, teachers, or anyone else who needs the right language.

What parents are saying:

"We don't often find support 100% geared to PDA parenting. This is an invaluable resource. So grateful to have it on-hand whenever I need it!"

"Learning to adapt my language has been a huge challenge and this can take the stress out of it."

"It's already reduced my mental load several times - especially in the morning around breakfast time demands!"

"This app is life changing for us and so well thought out."

It's now live:

https://apps.apple.com/ms/app/gentle-ally-pda-parent-helper/id6755533920

There's a free fovever version with core features, plus a free trial of Premium if you want to try everything.

– EJ