Parenting a child with ASD and a PDA profile

[WafflesandSquabbles]

I have 2 DC with ASD; one has a PDA profile.
I love my children more than life itself but Christ on a bike I am being tested to the absolute depth of my humanity!

I most likely have compassion fatigue after 13 years of sympathising, being scratched, hit and punched I just don’t have it in me anymore.

I’m also quite poorly at the moment with a virus and after being punched followed by a meltdown where for two hours I tried to reason, explain, soothe, became exasperated, got annoyed, cuddled, explained more , I finally collapsed in to bed exhausted, having had to forgo my plans to relax and watch a tv to unwind.

Then his guilt set in, I told him I loved him, it’s ok over and over but he wanted more and more and I just couldn’t give it. I needed to sleep but he wouldn’t give up and I asked him why his needs always come first. His self esteem is shot. My patience had gone.

So my guilt set in and now I feel like an awful parent. The knowing that this is never a one off, it’s a daily occurrence, it’s exhausting.

Nobody fucking gets it. MIL is huffed for us cancelling our visit yesterday. If she could see the stress we go through to get DS dressed and in the car to drive the hellish hour to her place with him crying all the way, she’d forgive us for not wanting to fucking do it!

We don’t tell her this because DH’s family don’t believe in autism; they accepted DS1 diagnosis but laughed at us when DC2 was also diagnosed with this imaginary trendy ‘thing’ we’ve made up in our heads.

Our friends also have an autistic child but they regularly say they have things under control, how they know what they’re doing and their DC is thriving.

So what the fuck are we doing wrong? Our child is highly anxious, miserable and our lives are dominated by his demand avoidance. Does PDA make a huge difference?

I don’t know why I’m posting; we have no rl support. If you got this far, thank you for reading.

Sorry, can't help but I just wanted to say you sound like a bloody amazing mum. You're doing your absolute best in a very challenging situation. Give yourself a break. Xx

PDA does make a massive difference

Read the explosive child (if you haven't already) and reduce demands to an absolute minimum - and by minimum we talking minimum!! Remember that things that we don't even think about as being a demand or even things they want to do are demands. I have one who couldn't cope with the decision of what to eat or even be able to ask for it. That was a demand. School was just too much altogether and we home educate. Puberty is particularly difficult due to the hormones flying around. You have my sympathy - PIL and parents don't really believe in autism - well certainly not autism that is verbal etc! And I have several autistic children. You were right not to go!

I wish I could give you a hug. It is so so hard. The guilt phase after the outburst is just exhausting.

Has the PDA been diagnosed? And what kind of support have you got with that?

I’ve been reading about ODD which has a similar-ish profile but some distinct treatment options - medical and behavioural.

This sounds tough and very grinding you down op.
My young dd is beimg assessed for asd shortly. Those who have children with pda is the pda always apparent early on in life?
At this stage we have a diagnosis of nothing and her being an only child it's hard to know what is just regular toddler/ young child misbehaving or something else. She even gets angry when we praise her!

Hi op, I can't really offer much advice as we are struggling too. My son is autistic and definitely has traits of pda. He is struggling so much, my patience is wearing thin and he's off to secondary soon adding to it, his behaviour has been very challenging, he often has me in tears. I also have a daughter who is not officially diagnosed, but likely autistic but she is easy compared to Ds - in fact she's an angel. No two children and no 2 children with asd are the same! You are trying your best and don't fret about what other people think. 💕

I know it doesn't help much, but I just thought I'd let you know you are not alone.

our family is similar too, they don't understand!

there are some books out there which can be quite helpful. Facebook groups too but often other parents won't be going through the same as you. I feel like we are very alone with Ds!

keep doing you, you are doing a fab job. Screw what other people think and say 💕

Thankyou so much for the lovely responses. I’m fretful and exhausted tonight so to know strangers have taken the time to reply makes a world of difference.

PDA makes a shed load of difference - its a much like asd as it is different.

Try the PDA Society as a start. Try Facebook groups for PDA and the special needs board here. You need advice from other patents who have PDA kids.

I have an 11 yo with a PDA profile. Feel free to dm any questions.

Sometimes I am a very crap mother too. Have a cup of tea and accept you are human and MIL doesn’t understand.

I really wish I knew the answer. We’re on our knees here. Not much help, I know, but huge sympathy for what you’re going through. 💐

I strongly suspect that my 8yo has PDA alongside his Aspergers and it is brutal. He’s actually a lovely child for anyone else but me, but as soon as I ask him to do something he becomes a demon. This morning I went in to get him ready for his swimming lesson, due 10 minutes of bowling, kicking and hissing at me. I bargained with him that he could go in the front of the car, and moved the seat around, all whilst he’s still screaming at me from inside the house. Then all of a sudden the switch flipped and he trotted along and got in. and came back home after (DH took him) full of smiles and stories of a fun lesson.

It would be funny if it weren’t a constant occurrence. so no. It’s not just you. But I wish I had the answers.

*cue 10 minutes of howling…

The Jekyll and Hyde aspect of it is what I find exhausting. Our DD9 has suspected PDA. We are very lucky in that the school has been so supportive as have the PDA society.
ours is made more complicated as I have a life limiting illness that is often a trigger for DD. Sometimes I can’t pretend to be ok on the mornings before she goes to school so a meltdown ensues, tbf sometimes it’s me that has the meltdown 😞