PDA child in charge of the household

[Tartandress23]

My 5 year old has PDA and ASD and is now basically in charge of the household.
Meltdown after meltdown if we don’t do things the way he wants us to.
He also wants to do everything himself, including more adult jobs, so we spend so long sometimes doing a simple task as he won’t let me help him. He had a full on meltdown on a day out on Monday because he couldn’t open his drink bottle , but didn’t want me to do it for him.
He talks constantly from morning until night, it’s usually him telling us facts he knows, about his particular hyperfocus at the time. He needs to have our full attention at all times, he does the same with other adults, and some children and cries/gets frustrated when they don’t appear to be giving him their full attention.

I’m starting to hate my life, he’s our only child, I was considering another, but there’s no way on earth I could cope with this as well as a baby.

What help do you have? Is he at school? What support does he receive in school hours? Are you getting appropriate benefits that could help fund a support worker or sessions with a psychologist or something that could help you all?

Have you looked for help with the PDA society, OP?

What is his behaviour like at school and how do they manage him?

At school he does have a bit of a problem with boundaries, but mostly I think he masks at school, because he does conform as needed.

No benefits, apart from child benefit.
Is it worth applying for DLA?

I don’t know what to do, everyone just thinks he’s badly behaved. Even though I’ve explained why he’s like this. I’m stating to doubt it myself , I’m so drained with it all.

My dd is 18 and runs my house too, at the moment it’s just me and her (her sisters moved to uni) and I think I have just allowed it to happen to keep the peace. She’s in charge of what we watch on tv, where we go, what activities we do, what we eat, when we go to bed….etc….etc…, if I try and change any of these things it results in a huge meltdown so I no longer attempt it ☹️. Occasionally I can change things as long as I can convince her that it’s the best option.

Is he diagnosed with ASD and PDA? I would apply for DLA

My DD’s behaviours or better at school/college because it’s so well structured, she does have the odd incident when she doesn’t want to do something or when she wants to do something she knows she’s not allowed too but most of the controlling behaviour is at home.

I'd really suggest looking for pda specific support groups. Parenting PDA is a very different approach to both NT and most ND parenting as I know you are probably very well aware!

Are you on the PDA Society website? If not it's a really good starting point.
Facebook has quite a few a groups. You can be much more honest in those groups because they get it. It's very easy to get the wrong advice or judgement.

You are probably correct in assuming he is masking at school and inevitably as a result he is exploding at home.

Definitely apply for dla.

Where did you go for assessment/diagnosis? Is there any ongoing support you can access there?

I'll try and post more later. But I have been in your shoes. I understand how challenging it can be.

You may already have loads of information but some of this might be helpful to others that don't necessarily get it. And even when you know it, I find it helpful to go back over things. It's only by understanding why behaviours happen, that you can begin to find ways to support so they are less likely to happen. Sadly, it may be that he is dealing with so much at school that he has to compensate so massively at home.

The Autism Discussion Page on facebook is not PDA only but he includes some posts specific to PDA e.g.
https://www.facebook.com/autismdiscussionpage/posts/pfbid02a18Jpor4EbMhQd45CfBeWNA5p81Pzoq5sGkiakFDJE593uJyCxE1ukcYWAkVQRFgl

I recommend his books, especially the one on Stress, Anxiety, Shutdowns and Meltdowns: Proactive Strategies for Minimizing Sensory, Social and Emotional Overload

People frequently think that if a child can 'behave' or 'cope' at school, then they should be able to do so at home. That is often SO wrong. Dr Luke Beardon (he was in one of the programmes Chris Packham made "Inside Our Autistic Minds") wrote this which is really helpful to explain to others

https://blogs.shu.ac.uk/autism/2014/11/18/good-behaviour-at-school-not-so-good-at-home/

No advice other than what's already been offered, but just wanted to agree with what others have said about the PDA society. It's a wonderful resource.

I have a child in my class with a very challenging PDA profile. It's really, really hard and some days can be totally overwhelming (many tears are shed - mine mostly!) I've no idea what I'm doing but the website has been a great help to me.

Mum of 5 year old PDA-er here too 👋🏻 completely understand what you're going through. Parenting a PDA child is so emotionally and mentally draining. And as others have said, it's a completely different way of parenting compared to NT children. (Having one ND and one NT is a whole lot of fun 🫠)
We've massively lowered demands lately and it's made everything much more manageable. From an outside perspective, we're giving in. But we know we're making him feel as though he has autonomy and that makes our lives easier. We also reframe our questions from 'can you put your shoes on please' to declarative statements e.g. ' I can help put your shoes'. He responds much better to this.
Although I don't practice what I preach, accept help from friends and family to fill your empty cup ❤️

Please get help. This is abusive towards you. Have you anyone that could help you out?

My Dd talked non stop too. She also wanted 100% attention all the time.

She was diagnosed ASd and then later ADHD. It was the adhd driving the attention demands and incessant talking.

You need to go no demand. Then low demand whereby you can increase demands.

We had to go no demand for several years. We are now at a place whereby we can place demands, if worded correctly of course.

It goes against everything we are told as parents, but it works, and it's worth it. You may lose friends, people will judge. But you will look back and thank yourself.

Look at Ross Greene.

There is light at the end of the tunnel. And it's bright.

Agreed @Flapearedknave !!
I too lost friends and had to defend myself against accusations from professionals, and made the mistake of posting on MN about it once - the judgement from some was overwhelming.
My dd is now a young adult. She holds down a job, drives and lives independently from me. She's an awesome individual who needed to learn how to become a healthy, successful PDA adult not a failed NT adult.

Solidarity and support here. Mine is 7. He controls everything. Different from yours in that he won’t do anything for himself. Still insist on being carried half the time. Talks or makes noise 18 hours straight every day. Sleeps in our bed. DH and I are not allowed to talk to one another or he goes apeshit. Nobody understands. It’s exhausting.

We are totally no demand. Which reduced meltdowns but means we are essentially prisoners in our own home.

https://www.thepdaspace.com/summit-2024

Lots of fantastic speakers including Dr Ross Greene (The Explosive Child)

That's fantastic to hear! Really inspiring.

My dc is lucky to be in a independent autistic school, and his teacher is wonderful. Hoping he will be successful like your daughter.

Congratulations to your daughter. She has come so far through some shit, and congratulations to you too! And I'm sorry that sounds so patronising, but I genuinely mean it.

Absolutely apply for DLA and short breaks funding too. Also, do you work? Can you apply for carer’s allowance.

Thank you so much @Flapearedknave
It means a lot from another parent!
I'm glad you have found brilliant professionals it makes it much easier. Ultimately we did too but by then school was no longer an option. It was a different pathway to adulthood for her through learning at home via EOTAS..
to all parents supporting their precious dcs

Honestly, to see that you guys have come through the other side, successfully, is heartening.

A few years ago I was distraught reading about Bethany, and my life became an absolute battle ground because that was not going to happen to us.

DC is now in a place where I am able to persue an actual career I love, and he is doing wonderfully in school. Yeah, he spends a lot of time in his room, on his pc. But he's happy, and he's learning to deal with his large emotions, and it's wonderful to watch.

You must be so undeniably proud of your daughter!

Check out Yvonne Newbold too - she has some brilliant strategies and explanations about constructive ways to deal with meltdowns, PDA, aggression etc.

Another vote here for the Plan B approach from Ross Green too

www.newboldhope.com/

5 and 7 year old here, both most certainly ASC and 5 year old has all the PDA behaviours (both awaiting diagnosis, still!). I'm fortunate to home educate them (I'm a former SENCo and early years teacher and lucky I specialised in children with additional needs) I make sure I use declarative language which helps a great deal and I have boundaries for the things that absolutely must happen like cleaning teeth, washing etc. This helps and I'm really flexible over everything else. We are a very low demand household and make sure we done do too much each day which reduces the meltdowns as there is so much anxiety over any demand placed on her, however, we still have boundaries as PDA children can struggle when left to set their own routines as that's a demand placed on them. We're still finding our way but things are working.

I think we are fairly low demand already, but will try more.
He sleeps in our bed every night and I totally resonate with the previous poster about how myself and my DP are not allowed to talk to each other. He needs total control all the time.

Please tell me how people deal with judgement from other parents, particularly other school mums.

@Tartandress23 I’ve become incredibly thick skinned about other parents. My DS goes to a small school that’s technically mainstream, but with a reputation for supporting kids with SEND. So most of his friends are ND and the parents are living the same sorts of through-the-looking-glass lives as we are.

When he was at pre-school, though, the judgement from other parents and nursery workers was absolutely awful.

Re low demand - what this looks like for us is we have no expectations that DS will do homework, read books or let us read to him. He only eats his safe foods. He eats whenever and wherever he wants (no family dinner time at the table, etc). We have no limits on screen time, no set bedtime, no expectations around bathing or changing clothes except socks and pants. He can cope with us cutting his hair about twice a year, and we do that at home. He won’t dress himself or brush his own teeth but generally lets us do this without too much resistance if we can make it a game. He still needs us to wipe his bum, and he won’t be in a different room from us.

I hoped we’d be a bit further along than this after being low demand for nearly 5 years, but I am just happy he goes to school. For now.

He is high masking and does well at school, and seems to enjoy the social aspect.

I’m going through this at the y
if you don’t mind me asking, what accusations from professionals? This is my worst fear that they will somehow blame my parenting :(