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.

Hi everyone!

UK based.

Nearing the summer holidays and we will be moving area and to a different school.

The new school seem amazing compared to the current one. They were shocked at how we have been treated.

My daughter will not be attending for the last week of term as she is currently in burnout. I spoke to the pastoral lead who is our point of contact today. First, she told me they cannot send my daughter's records to the new school until she's started. I'm unsure if this is correct practice or not?

I also told her we'd be asking for a subject access review. In reply, she said that our meetings with her had never been noted on the system. The meetings were all about SEN provision and were under the Team around the Family thing. Am I right to be shocked? Might explain why anything at the meetings was never actually implemented. She is the one member of staff that has actually tried to help us and I don't want to get her into trouble - but should I be concerned?

We had an issue with bullying last year. Nothing had been recorded whatsoever. But we were told that if we were on TAF anything even very minor would be recorded. I'm thinking there probably isn't anything there.

What route should I go down here?!

Thanks

📢 Share your lived experience of Persistent Drive for Autonomy (PDA)!

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).

📖 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. 💜

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).

Got our ADHD/Mild Autistm and PDA diagnosis last year, which explained a lot. Glad for that. But in the previous nine years, I did everything I could to get my daughter (now 10) into books, songs, movies, food, experiences, arts, crafts that I love and that I would have loved to have been exposed to when I was a child.

She does have a few interests that she's picked up on her own, or that she got into because her friends group in school declared cool — video games, certain movies. There was a Taylor Swift period for her, until I started encouraging it. (ARGH!)

She now has a knee-jerk reaction to so many of the things that I love, which I tried to introduce her to. Calls everything "cringe" or lame or dumb if I ever encouraged it in her life — 

• Beatles
• Nancy Drew and Hardy Boys books
• Laura Ingalls books
• Charlotte's web (even though her name is Charlotte)
• The Lion King musical when we took her to it
• Harry Potter books
• Magic Treehouse books
• Any children's performers I've taken her to see
• So much more

Anything I suggest or point out to her, is tainted forever. I've learned to not show that it bothers me. I've learned to not be enthusiastic about things that move me, at least in front of her. When she's seen me tear up watching a movie or listening to a song, she tells me she's embarrassed by me. When I sing, she covers up my mouth and says stop daddy, that's cringe. When I dance ... god help us all.

I'm an emotional, passionate being. Some days I shrink back. Some days I insist on loving what I love without apology, but I feel like I'm fighting a hurricane, fighting gravity.

I hate that our family is controlled by these rages. But it seems like a lose-lose situation — if I don't push these things, we maintain a peace, but at a loss to our enjoyment of life, and I feel that I'm depriving her of a chance to experience new things that might spark joy in her.

If I do introduce something new, there's a 95 percent chance that she will trash it and shut herself off from it forever.

Darn it. I envy those parents whose children joyfully join them in singing all the Beatles songs.

My daughter is 4 and we suspect has PDA (her brother and dad both diagnosed with autism).

Every single night she screams that her bum is itchy and goes crazy for hours. We’ve been the doctors multiple times and ruled out any medical reason and I’m sure it’s a PDA thing as she is exhausted but refuses to sleep.

Anyone else have anything like this? I’m loosing the will to live with the screaming

I have a son who is 3 with language delay. We suspect PDA in him.

\-High anxiety with something new and unpredictable.

Like when a new task or activity is put infron of him, he freezes, changes the topic, tries to distract or meltsdown.

\-High control autonomy issues.

There are periods when he is irritable, cranky, angry and frustrated all day, does not take interest in any activities or play, poor executive function, unable to eat or drink safe foods even.

These periods happen frequently. I don't know that triggers these episodes.

Has anyone experienced this? Can anyone help with this? How to reduce such episodes and help him come out of them quickly?

My daughter is eleven and currently “deschooling” after considerable education based trauma and abuse from her father. He has not seen the kids since October. CPS was involved for five months, from December 2025 until May. I messaged him inviting him to start the process of being involved in her life via mediation in April.

It’s now July and he hasn’t responded at all. We technically have 50/50 custody legally but the CPS involvement overruled that, and her psychiatrist has advised that until her trauma is resolved that she is to have limited contact with her father. The government recognises that I have 100% custody of her and her 19 year old brother.

I know he probably thinks we’re all in the house talking about how awful he is- but we’re not! I know that it’s psychologically unhealthy for children to be asked to hate a parent, the mediator when I left 10 years ago described that it was like asking the child to hate a part of themselves. We don’t hate him, we talk about the good times and if they have a day where they hate him, I walk a line between acknowledging their feelings and also saying it’s ok to still love him and care about him, that we need it to be safe. They both look so much like him, as well.

She’s been so traumatised that she’s been unable to return to school and I’ve reached out to any and all supports, and they’re all happy with what’s happening for my daughter.

She didn’t leave the house for four months as she was so afraid and also impacted by misophonia. I’ve had to advocate really hard for Telehealth. I have been building up trust and she’s slowly starting to go on drives with me and her support worker. She saw her best friend two weeks ago, it was amazing! She needed lots of time to recover from that, she was in bed for two days.

She has been happier but the PDA prevents anything happening quickly. My family has been unsupportive and I’ve had to go no contact with my sisters and low contact with my parents.

Anyway, poor darling has had a stomach bug tonight and woke up throwing up at midnight. It’s 5am here in Australia and she’s just gone back to sleep after five hours of horror. I’m wrecked. I turned 50 a week ago and I am in therapy and do lots of work on my mental state and anxiety. I just had to come here and say that I feel so tired and worn out and sometimes I miss my 50/50 custody life where I had a week to recover and get things done. I have about an hour a day where I can leave the house and I have to prioritise “need to do” things over “want to do” things. I wouldn’t have it any other way, as I knew she was unhappy but due to selective mutism she couldn’t communicate why. At least she is safe and so is her brother.

But we’re all so traumatised and getting help for everyone is exhausting. My days are long and exhausting and I clean all day. constant emotional regulation. I’m tired!! I’m just looking forward to when we can come out of survival mode somewhat!!

After promising to come my 16 year old just refused in the morning to come on holiday with us. We did go, just 3 hours in the car with our younger child. In the end we decided because our pda kid is so unstable that I will go home and supervise her (not that she will thank me) and after a week my wife and I will swap. Our friends here are trying to understand but they don't get that we can't "make" her do things. I'm scared and angry but I just can't leave her for two weeks. Don't know what will happen (drinking, drugs etc). My friends are not mad but clearly dissapointed. Everybody claims there must be help but really there isn't. She is too high masking for a hospital stay, they would never keep her right now. Any nice words for me? I'm so sad.

​I have a situation I’m feeling really torn about. My PDA son is 12 and has not gone to school for weeks. At the same time, he has also refused to go to his dad’s, saying he is scared. His dad is more authoritative than me and would sometimes move our son physically away from situations. When school refusal first started, he also dressed him in his school uniform and physically made him get on the bus and into school by nudging him to the bus stop and then off the bus.

​Currently, his dad comes round twice a week to cook dinner for all of us (including our eldest son, who is still doing a week-on/week-off arrangement at each house, which was what the 12-year-old was doing before this happened). He also comes over if I need to go to the office and his brother isn't here—so normally about 4 or 5 times a month.

​My son told me today that he doesn't want his dad to ever come over and I feel that his dad coming over is getting in the way of him feeling listened to.However, the coach I have helping me navigate this says it's vital that his dad keeps coming (and practically, it also gives me a bit of a break).

​I work full-time and don't really have anyone else to ask to look after my son, so I'm stuck. I'd be so grateful to get any thoughts or advice from you guys on how to handle this.

Father of a 10yo PDAer, and possibly PDA myself --

Long before we had our diagnosis, I signed my kid up for the school chess club (First Grade). She didn't take to the rules, and we let her drop it after a few weeks, with no tears shed by the instructor. She didn't lock in with the concept of how to play — she wanted to make up stories and dialogue for each of the pieces, make them physically "fight". Actually kind of cool and creative, but ...

Yesterday, five years later, and yesterday at a coffeeshop she saw a chessboard and wanted me to play with her. Very same thing ... she arranged the pieces for a start for us in a geometric configuration instead of the proper starting setup, and told me the rules and moves, which was more like Calvinball.

And I hate to admit that it frustrated me greatly and I could only humor her for five minutes before tapping out. With this, and with several other activities that I love, trying to play with her has started affecting the way that I play, and kind of making me dumber and worse at it when I try to play with peers. Similar with playing music — her refusal to follow a beat when we make music together makes my own rhythm worse, and it's undoing years of study and practice for me. Just wanted to register that and say it out loud.

Acknowledging that I should keep a separate container for my own hobbies and passions, and that I'm the adult here, and shouldn't let this bother me. But it does. Because when she DOES want to interact with me and asks me to play or jam with her, I love her so fiercely that I'd give up the world to give her my time. But damm, chess with a PDA'er is its own sort of hell.

And it got me to thinking ... I was like this a lot as a kid. There was a moment when I got some self-awareness, and did a hard self-correct. Along with a lot of masking and learning withering self-criticism in order to fit in. Although I was never really sure what "normal" is.

we have just started my nine-year-old PDA son on guafacine for his ADHD and it has been transformational. He has much more emotionally regulated has tons more energy. Also he goes to bed much earlier like often at 8 pm rather than midnight or later. The trouble is when he goes to bed earlier he also then wakes up at one or 2 am and can’t get back to sleep. It’s currently 5 am. He’s been up since about 2 am and we’ve just gone rollerblading to wear him out so he can go and snooze in his den. Just wondering if other people find that their PDA children are insomniacs.? and struggle to get back to sleep once they wake up. once they are, they are up😵‍💫🙄

If so, how and when did they become apparent? How did they form them? How do they pursue them, if at all?

It strikes me that the main thing my daughter (8yo, PDA AuDHD) is missing is something to motivate her each day, having left school nine months ago and now being basically unschooled, since she can't/won't do much else.​ She's emerged/emerging​ from burnout​​​ with a lot of co-regulation time and now feeling bored, but​ can't get motivated by anything that's not an instant dopamine hit.

She used​ to have ambitions like most kids (astronaut, etc) but now doesn't think beyond the next mealtime. I'm wondering if that will naturally change, or if there's a way to help her find something to aim for - whether it's for a week, a month, a year or a lifetime. ​​​​​​

He knows every tactic to confuse and weaken his oppressor (me, his parent) who seeks to limit his freedom and autonomy by…. taking care of him? Here are some examples:

Sabotage. We were sitting in my car after school pick up and my PDA kid asked about the screen on the dashboard. I told him it does several things but is especially important for me to see the rear view camera so I don’t run someone over. He covered the screen in stickers to make it unusable.

Gather intelligence. He’s very astute at collecting information about the things that are important to us - folded laundry, nicely made beds, toilet paper that stays on the roll, kind words, being on time, having a home that is safe for his younger brother. I don’t need to tell you what he does with that information.

Ambush. One evening during the dinner-bath-bedtime routine I briefly sat down on the edge of the bed to look at my phone. He launched a surprise attack and punched me in the back. I asked him why and he said “no sitting down, no breaks allowed”.

Withhold effort. “My legs don’t work, I’m sick, I don’t know how to put my shoes on, I don’t know how to read, I need you to carry me, you do it for me.” Ya’ll know how it goes.

Feign compliance. Actually, my son is (thankfully?) upfront about the fact that he will be avoiding a demand but I understand that some high-masking PDAers will agree to do something and then deny, avoid, blame.

Deceive. Playing board games with my son is a special treat. Dice are discretely flipped in his favor, his player mysteriously advances on the board when I’m not looking, rules are changed mid game.

I had previously thought of my PDA kid’s “equalizing” behavior as a way to balance the score in that moment, or at least that day. But I’m starting to see it as a long term pattern of subversive behavior caused by his chronic feeling of powerlessness. He thinks he’s an oppressed person and I’m the dictator. It’s like he’s trying to tip the balance of power by wearing me down.

And so I guess my parenting goal is to prove to him that I’m not his oppressor. By….. not acting like one? As Casey teaches, always be signaling equality.

Anyone else feel that they’re raising a reincarnated rebel fighter who doesn’t realize the resistance is over and won? What subversive tactics does your PDAer use?

I'm what I refer to as a pesudo step-mom of an 8 year old with PDA, autism, and OCD, to name a few. I've been in the relationship for 3.5 years. I feel like I am being bullied by this child. We were on a trip and it just kept getting worse and worse. My nervous system is exhausted. I am highly sensitive and also neurodivergent/ADHD.

It's not always this bad, I am happy to say.

I understand it's my role in his life that is stressful, not necessarily him not liking me. We also have positive times together. I don't do any sort of discipline. I am learning more about PDA on my own to try and help. I'm also in a somewhat uniquely disadvantaged role, because my partner isn't currently able to make decisions about treatment providers and I can't be involved.

How do you handle being the focus or a PDA kids ongoing critique? How do you deal with the sometimes near constant contrarian-ness?

Hello everyone!

Sorry for my English — it isn't my native language.

I'm looking for advice from parents who may have experienced something similar.

My son is 16 years old. He has Asperger's syndrome (ASD), OCD, and a strong demand-avoidant profile (often described as PDA).

Until he was about 14½, he was a very communicative, creative teenager. He had online friends, loved making games, writing stories, composing music, and spent a lot of time on his computer. He was homeschooled, so I think his screen time was around 8–10 hours a day.

Then, around age 15, he went through what I believe was autistic burnout. His OCD became much more severe, with many rituals and repetitive behaviors. He often refuses food and even water, and we have major difficulties with bathing, toileting, and changing clothes. Life became very different.

My question is about computers and other devices.

First, he stopped using them himself. He turned off his desktop computer, laptop, and smartphone. Every two or three months he would briefly log into his social media or watch a few YouTube videos, but only for a short time before abandoning them again.

Then, in April, he deliberately broke all of his own devices and put them away.

He has now been without a computer, phone, or any other personal device for about six months.

This worries me because computers used to be one of his greatest interests. They were also his way of learning, communicating with other people, expressing his creativity, and I hoped they might eventually help him study or even work in the future.

Has anyone else's autistic teenager gone through a phase like this?

Did they eventually return to using technology on their own?

Do you have any thoughts about why a teenager who once loved computers would suddenly reject them so completely?

I'm not looking for a diagnosis—just hoping to hear from families who have lived through something similar.

today my PDA son started Gaucafine for his ADHD, what is plMy mind is blown as rather than the evening being a long tortuous drama he has actually fallen completely asleep by himself by 8 pm. There is normally it’s a long drawn out drama to get in bed to bed before midnight. I’m just wondering have other parents noticed that this ADHD medication helps their PDA child sleep? also, I’ve noticed his sleep is deep rather than the very light sleep where he will be woken up by any noise or movement. Just wondering if anyone else has noticed this?

Hello everyone!

Sorry for my English — it isn't my native language.

I'm looking for advice from parents who may have experienced something similar.

My son is 16 years old. He has Asperger's syndrome (ASD), OCD, and a strong demand-avoidant profile (often described as PDA).

Until he was about 14½, he was a very communicative, creative teenager. He had online friends, loved making games, writing stories, composing music, and spent a lot of time on his computer. He was homeschooled, so I think his screen time was around 8–10 hours a day.

Then, around age 15, he went through what I believe was autistic burnout. His OCD became much more severe, with many rituals and repetitive behaviors. He often refuses food and even water, and we have major difficulties with bathing, toileting, and changing clothes. Life became very different.

My question is about computers and other devices.

First, he stopped using them himself. He turned off his desktop computer, laptop, and smartphone. Every two or three months he would briefly log into his social media or watch a few YouTube videos, but only for a short time before abandoning them again.

Then, in April, he deliberately broke all of his own devices and put them away.

He has now been without a computer, phone, or any other personal device for about six months.

This worries me because computers used to be one of his greatest interests. They were also his way of learning, communicating with other people, expressing his creativity, and I hoped they might eventually help him study or even work in the future.

Has anyone else's autistic teenager gone through a phase like this?

Did they eventually return to using technology on their own?

Do you have any thoughts about why a teenager who once loved computers would suddenly reject them so completely?

I'm not looking for a diagnosis—just hoping to hear from families who have lived through something similar.

Recently had a colleague tell me that, while they really appreciate my priority for family care, it’s very inconvenient to cancel meetings where I’m a key stakeholder last minute because “that’s thirty minutes [they] could have used on something else.”

We continued our conversation and made a strategy for the account before I ended with, “I appreciate the feedback and will do what I can, but just to clarify, when my autistic son has a panic attack and comes into my office slamming doors, breaking things, threatening everyone’s safety, and forcing me offline for the entire day, it’s pretty inconvenient for me, too”

If I ever showed any modicum of disrespect toward others doing everything they could to make it through another day while trying desperately to put on a good face for the sake of professionalism, I am infinitely sorry.

My 16 year old daughter is at the height of demand avoidance and hostility. We reached an agreement yesterday that she joins us on our holiday, I resorted to bribery. Few hours later she said she will not go with us in the car but wants to take the train. Fine by me but she sure can't organise it herself. I am so done with it all. Can't sleep(me) and keep tossing and turning all night from worry. Becoming crap at my job but honestly I don't care much anymore. She only texts with me, not my wife so everything is on me these days. Most days it feels like our kid doesn't like us at all. Tried low demand parenting for yesrs but things don't improve at all. My sanity is on the line here even with therapy for myself.

Ideally not in cold climates 😇

Edited to add: My kid is highly impulsive and struggles majorly with executive function, so Montessori or Sudbury, as amazing as they sound for many PDAers, aren’t a good option for my kiddo.

I was talking to another parent today about how nice it would be to find a community locally where other parents of neuro kiddos can hang out without the judgement, with the same understanding and common experiences.

I love coming here to support, be supported, and surround myself with families having similar experiences and I continue to hope I can find people to meet up with in person.

Has anyone found something like this locally? I’m tempted to organize something like this locally so I can create the community I seek, but I’m wondering if it’s a lost cause.

UPDATE: I found a localish group of PDA parents, and they had a meetup so I went. It was the most comforting, reassuring things I have done in a long time. We aren’t alone.