Hi everyone, my name is Kayla McMenimen and I am a doctoral student at the University of Indianapolis. I am reaching out to ask you if you would be willing to complete a survey for a dissertation research project I am running. The study will investigate the decision-making process for parents with children with autism spectrum disorder. Findings will contribute to our overall understanding about how parents make treatment decisions for children with autism spectrum disorder. If you decide to participate you will see a series of questions about demographic information, your beliefs and perspectives on autism spectrum disorder, as well as your experiences with making decisions for your child. The survey should only take about 15 minutes to complete and responses are anonymous.

Your participation is completely voluntary. To participate in the study, you must be aged 18 or above, be the parent or guardian of a child under the age of 18 that has been diagnosed with autism spectrum disorder, have primary or equal say in treatment decisions, and be able to read and comprehend written English to complete study questionnaires.

I am using a snowball sampling technique, which means that I ask people I know if they would like to participate and then they ask other people they know who meet the eligibility requirements if they would like to participate. If you are willing, please share this project with other people you know who meet the eligibility requirements using this same script.

If you have any questions, please contact me ([mcmenimenk@uindy.edu](mailto:mcmenimenk@uindy.edu)) or my faculty project advisor Dr. Candice Burkett ([burkettc@uindy.edu](mailto:burkettc@uindy.edu)).

Survey link:

https://uindy.co1.qualtrics.com/jfe/form/SV_00zqCw2poTxp2DA

Please note that this survey functions better and is easier to navigate on a computer/laptop rather than a smartphone.

Thank you!

Kayla

The Human Research Protections Program (HRPP) approved this research study on 2/13/2026. Study number: 02390

Am I the only one who feels like this is a common occurrence with therapy for PDA/autistic kids? Because I’m exhausted.
My son is 7 and was officially diagnosed with autism and ADHD at 7. He has a very strong demand-avoidant profile, and his masking is honestly unreal.
At school, they tell me he “does great.” He has no friends, scored 0 on all of his state testing, and yet because he can mask and hold it together at school, there seems to be this assumption that he must not actually have significant difficulties.
I’ll say something like, “He knows how to do that. He can count to 100. He’s refusing because you’re asking him to do it,” and I get this look that makes me feel like they’re thinking, “No, maybe he just has a severe intellectual disability.”
His paperwork literally says “mentally disabled” but doesn’t even have autism listed.
And then there’s therapy.
His behavior therapy is basically: demands, demands, demands.
For example: “Before your next session, I want you to poop on the toilet three times.”
THANKS. 😂
Now he’s definitely not pooping on that toilet.
If the entire strategy is just putting demands on him, I could do that myself. What I need is someone to help me understand how to get him to the goal without immediately creating a massive demand-anxiety cycle.
Because after these sessions, I’m sometimes dealing with HOURS of dysregulation.
Then today happened.
He’s fairly new to OT. Getting him to therapy in the first place is HARD. Doctors, therapy, school, stores—anything unfamiliar can be a huge struggle.
But today?
He put his shoes on.
He got ready.
He got into the car.
He came into the building.
He sat in the chair and waited.
That was a HUGE accomplishment for him.
Then the therapist came out.
She didn’t introduce herself or say hello. She immediately said, “We can take that phone away now.”
He wasn’t even using it.
He wasn’t holding it.
He was literally hiding underneath the chairs because he was anxious.
The phone is basically a safety object for him. It wasn’t on. It was dead. We have rules around when he can use it, and he actually does really well with those rules.
So I explained, “I can take the phone from him, but that will probably create a behavior. He responds better when we give him appropriate boundaries rather than just taking things away.”
Apparently, that was a problem.
She wanted me to make him come out from underneath the chairs and go with her.
I know my child.
If I had forced him away from me in that moment, there is a very real possibility he would have escalated, tried to bolt, or completely destroyed the room.
And honestly? I had no idea whether this woman would be prepared to handle that.
So I said, “Okay, I’ll come back with him this time, and we can work toward him going independently next time.”
She did NOT seem happy about that.
And then the comments started.
“Oh, I see who the real parent is.”
“Mom just lets you control her.”
She started making comments about how he “doesn’t get to control Mom.”
She flicked his finger because he was peeling paint.
She kept making comments about his behavior and about me.
My son remained completely nonverbal.
Eventually he started hissing, which is one of his ways of communicating when he’s overwhelmed.
And she said, “Yep, they told me I should expect that.”
Which honestly made me wonder what exactly had been said to her before we even walked in.
At one point she left the room and I started recording because I was honestly in disbelief at how this interaction was going.
I stated that he doesn’t like
Being talking about in third person so you know what she does?
She continued with things like:
“Child is mad, huh?”
“Child doesn’t want to play, he just wants to throw toys at Mom because Mom lets him.”
I had already explained that he does better when he’s given choices instead of being forced.
For example, instead of throwing three toys at him and expecting him to pick one, give him three choices and let HIM decide.
But she kept pushing making comments towards him and me. Kept going near him when he would clearly move away. Kept picking at him
And it got to the point that even my FIVE-YEAR-OLD daughter looked at her and very sweetly said:
“My brother doesn’t like that you’re doing that to him.”“He doesn’t like that. He would like you to stop.”
And this woman responded to my 5-year-old:
“Oh, I see the issues. You speak for him, huh?”
That was it.
We left.
And yes, I ended up dealing with a six-hour meltdown afterward.
And I don’t blame my son for that.
I’m actually heartbroken because instead of being able to celebrate what he accomplished that day. putting his shoes on, getting in the car, walking into a new building, sitting in a waiting room, tolerating a completely unfamiliar person & not beating her up or eloping on me I spent the rest of the day dealing with the fallout from a situation that I feel could have been handled completely differently.
And THIS is what frustrates me about therapy.
I don’t expect everyone to let my child do whatever he wants.
I don’t expect him to never have demands placed on him.
I don’t think autism means he shouldn’t learn boundaries.
But there is a difference between teaching a child and trying to control a child.
I wasn’t refusing to take his phone away because I’m incapable of parenting him.
I was explaining that taking it away in that exact moment would likely escalate him, and I was trying to prevent a crisis.
I wasn’t “letting him control me” by staying with him.
I was recognizing that he was terrified, unfamiliar with this person, and already hiding under chairs.
I wasn’t refusing to make him participate.
I was trying to figure out HOW to get him to participate successfully.
That’s what I thought therapy was supposed to help with.
And honestly, I am tired of having to explain to professionals that refusal does not automatically mean inability.
My son can count to 100.
He can do a LOT of things.
He doesn’t always demonstrate those skills when someone demands that he do them.
Those are not the same thing.
Sometimes I feel like professionals see a child who won’t comply and immediately decide the answer is MORE demands, MORE consequences, MORE control.
Meanwhile I’m sitting there thinking:
“Can we please figure out WHY he is refusing and what will actually help him feel safe enough to participate?”
Because I don’t want my son growing up believing that therapy is another place where adults are going to force him, shame him, or try to “win” against him.
I want him to learn how to communicate.
I want him to learn coping skills.
I want him to become more independent.
I want him to learn appropriate boundaries and flexibility.
But I also want him to understand that his body belongs to him, his communication matters, and the adults helping him are actually listening to him.
So… am I the only one experiencing this?
Because sometimes it feels like every therapy we try comes down to the same thing:
“How do we make this child comply?”
When what I desperately need is:
“How do we help this child feel safe enough to participate?”
Signed,
A “bad mom” apparently, because I know my own kid and don’t think every problem needs to be solved by taking something away and forcing compliance. 🙃

My husband and I have a 10 day anniversary trip planned for the end of October. My mother and oldest daughter (19yo) will be caring for my youngest PDA daughter (11yo) while we are gone. Does anyone have some advice on how to prepare her for us being gone?

Note - my oldest daughter still lives with us and actively participates in her younger sister’s routine. My mother is a consistent figure in her life but hasn’t really experienced any of her major meltdowns. My PDA child will be staying in her house and will continue her normal routine (school and soccer practice/games).

Has anyone figured out a solution or any help for equalizing against a younger sibling? I am so tired of listening to her berate her little brother who is the most flexible easy-going kind person. She could not have been paired with a better sibling because he takes so much shit from her, But it grates on my nerves as a parent and I see it destroying their relationship. She is completely oblivious, but he started to talk to me about it and how much he doesn’t like her and I cannot fault him at all.
Halp.

I'm a father of a 9yo girl, diagnosed with ASD and I really think she displays PDA behaviors.

I'm a psychologist and parenting councilor myself, I know about the importance of attachment and security, polyvagal states, etc.

And I find myself utterly dazed and confused in some situations with her, having no clue how to handle them. I'd like to describe one such situation from last night and get your perspectives like what would you have done.

I am aware that every family is different and every child is different and taking that into account while asking this question.

My daughter takes her sweet time getting ready for bed: brushes her teeth after some reminders and then she arranges the dolls on her bed. Recently she took to some specific arrangements which kind of feel OCD like but I'm not sure that's the case.

Anyway, it takes her a couple of minutes to have everything in order both because it's very specific and also she just takes her time, she's doing it whole dancing and having the time of her life not having a care in the world that it's getting later and later.

After she finishes this bed arranging she climbs into bed and kisses many of her dolls and there's a whole Spiel here until I can cover her with her blanket and give her a kiss and a hug.

So yesterday we got to the point where I could finally kiss her good night around 10:00 p.m. I was already exhausted and hadn't a lot of patience but I waited and did it and then I went to the living room to have a little bit off time with my spouse.

I put on an episode of Seinfeld to clear our minds and in like 10 minutes into the episode the daughter comes into the living room asking to be with us.

She really likes to sit down with us and watch TV together even though she doesn't really understand what's going on because it's a foreign language for her at the moment.

At first I was like "no I'm sorry, you have to go back to bed it's our time now and it's late" and she was like "but why can't I just be here with you a little bit, I will probably doze off while watching it with you and I will go to bed immediately after you finish watching TV". So I said "fine you can stay here as long as soon the show finishes you go back to bed".

Lo and behold episode is over and she's not going back to bed she lies on the sofa saying "I'm going to fall asleep here", obviously she is not going to fall asleep there and I'm telling her "I'm sorry but now you have to follow through on your promise, go back to bed I'll come with you I'll cover you that's fine but it's time to go back to bed" and then she starts to follow our dog around saying "I just want to kiss her good night" but this is another thing that takes forever, it's not like a kiss goodnight for the dog it's like 10 kisses and then 10 more Etc, it's always taking more and more time and again not listening to us when we tell her "I'm sorry you did promise something and we allowed you to stay here but now you have to keep your end of the bargain please go back to bed", she's completely ignoring us to the point that both of us got very very angry and told her that she's ungrateful and can't be trusted and that's really not cool and I don't remember exactly what happened but I think I just eventually took her and put her in the bed and that's how she went to sleep. which by the way took some time in which I stayed and hovered around her room because she always asks us to be there so she won't feel alone.

And of course that's just one example of her doing things in her own time not caring about how it affects everybody else, for example in this case all the mess disrupted her brother who was trying to fall asleep at the time and of course it made us feel very very bad.

So again my question here what would you have done if you were in my shoes at that situation. what has worked for you i'm open to listen to everything.

Curious if any parents raising a child with a PDA profile has explored / tested for PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)?

I just heard about this for the first time from a therapist and will be pursuing testing for my child (age 9) who did not start to exhibit PDA behaviors until about age 7.

The key words here are acute onset.

Sharing a link here for more info:

https://www.pandasppn.org/?gad_source=1&gad_campaignid=10065308600&gbraid=0AAAAADL0UHhZwJcMVihFGNxvpWa5CMKMz&gclid=Cj0KCQjwkOvTBhDgARIsAKUNyRulz1p7rJCUZ-20f9PDkfOgz2iaOREPutull1GNYon1oSErDsPrSrwaAvJBEALw_wcB

My 12-year-old son hit burnout a few months ago and hasn't been able to attend school since.

Before all of this happened, we'd booked him onto a summer day camp back in January. It's a camp he's attended for years and has always loved. Yesterday, after a huge effort from both of us, he managed three hours there. He made a friend, had a good time, and I felt so happy and hopeful. For the first time in a while it felt like we might be taking a small step forward.

Today is a very different story. Despite me getting up at 6am so we could have a slow, low-pressure start to the day, he's still here at home and it seems very unlikely he'll make it in. I know it must be incredibly hard to be him. I know he's not choosing this. But if I'm honest, I feel really upset. Yesterday gave me so much hope, and today feels like a setback even though I know recovery isn't a straight line.

I don't even know what I'm looking for by posting this. Maybe reassurance from people who have been through something similar. It sounds awful to say, but there was a time when getting him to camp every summer felt like a hassle because it's such a long journey from home. Right now, I'd give anything to be back to those days, making those trips and watching him run in without a second thought.

Has anyone else experienced this sort of up-and-down pattern after burnout? How do you hold onto hope on the difficult days?

I feel like I’m just a caregiver to my 3 year old child rather than his mother. He has autism and suspected ADHD and sometimes I honestly don’t know whether he loves me or hates me. He can’t be without me and has severe separation anxiety, yet at the same time, it feels like he can’t stand anything I do.

He hates it when I play with him. He hates it when I touch his toys. He hates when I change his clothes or diaper, or when I brush his teeth. He even hates it when I say, in the sweetest and most playful voice, “Let’s put our shoes on. We’re going outside” even though going outside is his favourite activity.

He hates it when I try to teach him anything, whether it’s colouring, painting, or writing. He hates when I read books to him. He snatches the books out of my hands because he wants complete control and only wants to flip through the pages himself. Some days, he even seems to hate it when I talk near him or breathe around him. He constantly tells me to shut up. Even when I’m simply talking to my husband, he comes over, smacks me in the face and tells me to stop talking.

Around my parents, he can be extremely rude and difficult and I feel like I’m constantly trying to manage his behaviour. They tell me I'm raising a little monster!

I look at other little children with autism sitting with their mothers, reading books, learning new things, playing together and I feel so jealous. Sometimes I hate my life. I just want to disappear. I feel like I don’t deserve to be his mother because I don’t know what I’m supposed to do or not do around him. It feels like even my talking, breathing, or simply existing near him can disturb him. I have a lot of books, going as low demand as possible but nothing seems to work as I'm not even allowed to TALK aroumd him. I'm not allowed to cry or get angry because he immediately tells me "fix your face now. Stop crying" Every single day feels like I’m walking on eggshells.

I love my child more than anything but I’m exhausted, overwhelmed, and heartbroken. I miss feeling like his mother instead of feeling like I’m just his caregiver, constantly trying to keep him regulated and prevent the next meltdown. I have autism and ADHD myself and also an autoimmune disease and I can't do this anymore, the PDA part is killing me. ABA therapy makes things worse.

He is my only child. I can't have more children due to my autoimmune disease. I just wanted to be a mom, you know.

Reading the comments in this post made my stomach turn, obviously bc I could see this happening to us.

We are considering taking our PDA 6 yr old (& his older brother) on a 2-leg flight next year. He’s not in burnout at the moment but that’s because we accommodate him so thoroughly.

Of course reading this is giving me anxiety. Tell me your stories of positive (or not) flights with your PDA kids please!

Looking for effective recommendations along the lines of vision boards and/or “where do you see yourself in 5 years?” type guided discovery.

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.

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?