Autistic PDA child vs grandma - wwyd?

[QueryAutism]

For context, my 4 year old is undiagnosed, very likely autistic with a demand avoidant profile. Since we realised this we have been following the guidelines for parenting a child with autistic Pathological Demand Avoidance. The most relevant aspect for this situation is that we try to pick our battles - we have some non-negotiable boundaries which we uphold firmly with regards to health and safety, but try to keep rules to a minimum and don’t argue over what we are as the ‘small stuff’. His grandparents (who see him every couple of months) question whether he is autistic because he’s very verbal and makes good eye contact, but his school also feel that he’s autistic.

We were at our own house, grandma visiting. Son was jumping on one of those small trampolines for toddlers with a handlebar to hold onto, holding a toy car in his hand (one aspect of his autism is that he likes carrying small objects around all the time). He was holding onto the bar with one hand and holding the car in the other. This isn’t something that personally I felt was very dangerous. Bouncing and holding objects are both things he does to regulate himself and we bought the trampoline for this purpose.

Grandma asked son to stop bouncing with a car in his hand because it’s dangerous. She expected him to put the car down or get off the trampoline. Son said no and started to get anxious/angry. After a short back and forth argument I came into the room and both looked to me to settle the situation, so I became the middle man (although this was fair enough as his parent).

I wasn’t really sure what to do as grandma felt he was being rude by refusing and I should back her up and make him comply. But I didn’t actually agree that what he was doing was dangerous and saw his point.

Wwyd? Back up grandma because she’s the adult and she’d asked him to stop? Or explain that you didn’t agree with the boundary she was trying to set?

You weren't there initially. She thought it was dangerous. If you don't trust her decision making then don't leave your son alone with her.

If your own mum, "Love you mum but back off!"
If your MIL, DH to explain the objects in hand.
Neither will necessarily understand adaptive parenting or pda for that matter, they may well think you are enabling/he is being deliberately obstructive.
All that said, one-handed trampolining isn't great (and I say that as a parent of ND children).

If you’re sure it was safe I’d say “oh I think he’s fine doing it but thank you” or something.

“Sorry, you weren’t to know, but we allow him to do that”

Also agree that easier to preempt rather than referee after.
His Gran meant no harm.
She thought if he did slip then an object in hand is something sharper to land on/more likely to tip the trampoline or off balance if only holding with one hand.
The part I will empathise with on your side is the frustration you must feel at her insisting he is NT. I've had that - but he makes eye contact/but he has a sense of humour/but he showed some affection, can't be autistic - I grit my teeth and ignore. Smile and wave, boys, smile and wave

does she ever look after him alone?

“Oh it’s fine Grandma, he does this all the time and it’s never a problem”.

You could try explaining, later, that he needs the sensory input from bouncing to help him regulate, and the car is kind of a comfort object.

If she chooses to get uppity about it that’s not your problem.

As a parent of an autistic kid you have to develop a thick skin in the face of people judging your parenting 😄

I have an autistic child with a demand avoidant profile (diagnosed autistic, but assessment didn't cover PDA).

Luckily my parents tend to be respectful of the way we parent the children; if DH or I or around they will let us do the parenting and they might occasionally say something to one of the children but it tends to be in line with what we do/say. Of course it's not perfect and sometimes I wince internally at their comments but if it was something really inappropriate I would challenge it. My child's wellbeing trumps theirs (they're adults, they can handle it!)

In this particular case I would suggest that since you were not in the room, it was understandable that the grandparent asked your child to stop jumping. In an ideal world they would have not told the child to stop in those words but would have said "I wonder if it would be safer for you to hold on with both hands - do you want me to hold your car while you jump?" Or even ask "do mummy and daddy have any rules about jumping on the trampoline? Do they have a rule about holding on with both hands or not?" ... and/or just mentioned to you they felt uneasy with it and asked if you allow it. But of course that's an ideal world and if a grandparent is dismissive of the idea a child has autism - when the parents and school suspect it - they are not exactly likely to handle the child in the best way, are they :(

No real suggestions I'm afraid but I do get it. I think that a lot of people responding won't get it, because they don't have an autistic/PDA child and they'll take the grandparent's side. So if you want more understanding and advice maybe post in SEN parenting.

Yes this! After my long winded reply
this nails it

To reply to a few people at once -

Grandma is my mum. I was raised very differently, authoritarian, no arguing back, crying and certainly being angry is bad behaviour and there will be consequences. So the way we parent is clearly a shock to the system.

No she doesn’t look after him on her own. She did a couple of times when he was a baby but he struggles with change and so we don’t really leave him ever when awake. She has babysat a couple of times while he’s asleep but he hasn’t woken up.

I was upstairs getting little sister up from her nap when the disagreement happened. I certainly trust her enough to leave them alone together in a room for two minutes. If she weren’t there I would have left him alone downstairs while I did that. He’s not the kind of child who is so unsafe you can’t leave him alone or with another adult who doesn’t have parental responsibility. As I said I didn’t actually deem what he was doing to be unsafe. He was bouncing in a very controlled way, not really high dangerous jumps or anything (at least when I was in the room, but he never jumps very high or fast).

Thanks for all of the replies and opinions.

Others not accepting he’s autistic and therefore not really understanding why we parent like we do is very tough. People tend to have a very stereotypical view of autism and if a child isn’t non-speaking and completely uninterested in other people then they can’t possibly be autistic apparently. Hopefully things will change if we get a diagnosis but it will be a while.

He never jumps very high or fast
Not yet.
Sorry OP your child so you do the risk assessment.
It's just that having seen one of the handled trampolines go over forwards with exuberant jumping, it depends on height/weight ratio and how good expensive your trampoline is. My friend's was a mini one from Argos and hers had outgrown it without her realising. I also have one, mine is sturdier (Amazon) but even then, DC can make it move if I'm not there.
My DD was once pushed over with a pen in her hand. She gouged just above her upper lip, had to be glued together and has a scar ever since. That's why objects in the hand trigger me!
I promise I wasn't being judgy I'd just hate yours to go through what mine did.
Good luck with the diagnosis (and your Mum) x

Your son is in his home, doing what he normally does.

Grandma getting stressed/angry at him is going to make him feel unsafe and this is not going to help anyone.

l would not be backing up Grandma - this would confuse your child entirely - because you would be telling him he could not do something he normally does, just because 'grandma doesn't like it'

Grandma is a grown up who can cope developmentally with people disagreeing with her and having to compromise.

I do appreciate the info, maybe I should be more scared of the one handed jumping. Thankfully it’s a sturdy one, it’s not actually designed for children, it’s marketed for adults for exercise and the max weight is 100kg or something, but I’m sure an accident could happen under the right combination of circumstances. To be honest though, I feel like there are so many safety related things that we have to be firm on - holding hands to cross the road, not trying to wiggle out of your car seat straps, not trying to do backflips on the sofa with a mouthful of cake etc. etc. - we do have to pick our battles, and sometimes that means risking a split lip or a bump on the head in order to not be in conflict with him all the time. I try to prioritise the things that are most likely to actually kill him 🙈

Our DC are NT but we do have experience of authoritarian grandparents expecting things to be done a certain way and expecting their instructions to be followed. Over the years, we have just got good at repeatedly saying that, in our house, that behaviour is allowed so please don't criticise it or intervene as it simply confuses or upsets the child. If the grandparent wishes to discuss it, we ask them to do so once the DC are in bed.
When we're at a grandparents' house, the rules are slightly different. Whilst the DC are allowed to have drinks in the sitting room and eat on the sofa at home, that isn't allowed at the grandparents.

“Oh, he’s fine mum.”

your mum sounds like my in laws. God speed

I don’t think older people really understand pda my mum doesn’t and my son has been called manipulative, controlling etc she doesn’t understand the way I communicate with him it’s tough but perhaps a chat with her without you son there would help. I’ve had the questioning re autism etc too it’s bloody draining when you’re constantly trying to manage things and not put demands on them. I don’t leave my mum alone with my son ever. She just doesn’t get it and it’s not fair on my son.

just explain you parent in a specific way and he does this to regulate himself etc I think parents like ours - mine was very similar by sounds of it are never going to catch on to the low demand parenting etc it would be lovely if they could but I always feel judged and that she’s seething that I let him do certain things as I said above I’m sure she thinks it’s manipulation etc

I don’t think older people really understand pda my mum doesn’t and my son has been called manipulative, controlling etc she doesn’t understand the way I communicate with him it’s tough but perhaps a chat with her without you son there would hel

nothing is stopping a judgemental older relative from researching @Shopper727

and your mother has called your son manipulative and controlling?

she sounds very unpleasant

To be fair, a huge number of younger people don't understand PDA. I think most people don't understand it unless they have personal experience of it. A lot of the experts in the field seem to have children with PDA, too.

yes but if my daughter was telling me my grandchild had PDA… the. i’d bloomin well be invested in researching as much as possible so i can support

True, and that's my mum's attitude, luckily for me and my DC.

I think as he's not diagnosed (and PDA may not be in your area) you could try talking about needs and strategies. I appreciate long waiting times but he may be neurodivergent but not autistic - I think it's important to talk about his needs and what works rather than diagnosing him yourself.

I agree with the poster above - you think your child is autistic with a PDA profile but they are not diagnosed.

The evidence base for PDA as a clinical profile isn’t that strong (and the evidence base therefore for low demand parenting in that context) as I understand it either and I think 4 would be very young to diagnose it as many 4 year olds are defiant and oppositional.

I would still adapt to parent the child you have but be cautious making ‘clinical’ type assumptions without a diagnosis.

However, I would probably have been the same as you in not being too bothered about jumping with something in the other hand - everyone has different risk tolerances. A classic gritted teeth moment, I try and ride it out in similar situations, but sometimes I explain. Good luck.

Thanks everyone. Re: not having a diagnosis - in an ideal world where we could get an assessment in a matter of months rather than multiple years, I would be more hesitant about assuming a diagnosis. However given that the waiting list in our area is around 3 years and we aren’t likely to get a diagnosis until he’s 6-7, we and the school have had to make some assumptions in order to put the right support in place for him. We feel he very clearly is autistic based on the diagnostic criteria, and several professionals have said the same. Learning about ASC and PDA and adjusting our parenting style accordingly has been one of the best things we’ve done for him. If it turns out that he doesn’t meet the criteria for a diagnosis, then it won’t really change anything because the strategies we’re putting into place are working regardless of whether we have a piece of paper saying he’s autistic or not.

I’m with you on this. Interested to know if the previous posters have PDA kids.

My son's assessment was done through the NHS Right to Choose route. I recommend it as it's much quicker than the standard route. You choose a private provider that accepts NHS Right to Choose funding and ask your GP to refer.

This is just one of the providers - there is helpful info on their website:
https://wellbeingasd.co.uk/services/right-to-choose/

And if you're on Facebook there is a group you can join that has a pinned post with a list of providers:
https://www.facebook.com/share/ibckt5dwaDvjNnLa/?mibextid=K35XfP