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?

@NameChange30 how long did you wait?

PDA is very rare though. Oppositional behaviour and rigid thinking is part of the 3-4 year old job description. Which doesn't mean he isn't autistic, but much more likely he is autistic (common) and a toddler so therefore illogical and oppositional than that he has PDA (rare) rather than "common or garden" demand avoidance in autism (common).

I think it's important to consider in wider terms what you are teaching him about life and the world.

I think parenting to avoid upset is a worry.
Parenting to avoid critical meltdowns maybe less so. I don't know what this is.

I don’t think jumping with a toy in your hand is likely to hurt him so I’d say that. As far as your mum wanting to tell him what to do, which is essentially what this is, I think that’s more tricky. Start noticing when she chooses to do it and why. I have a grown autistic child and this is a part of raising a disabled child that is less talked about. I have had people cross the road in order to interact with ds when their paths cross and certainly some relatives who seem to look for moments to exert authority or create an issue. It’s an odd one. I’d go with a light touch, and just say he’s allowed to do that and you don’t think it’s a problem.

For autism, it was about 3.5 months from GP referral to diagnosis. It varies hugely depending on the provider you choose.

how long ago was this?

Very recent. Assessment and diagnosis in February.

PDA is different to being defiant, demand avoidant (as per asc) or oppositional.
its not just, “little jonnny doesn’t like brushing his teeth”

is pervasive, it’s their basic needs, it’s the things they love and enjoy, it’s very very different and as pda parents, so hard to find anyone that understands unless you have first hand experience.

Yes I know. It's my job.
Autism with demand avoidance due to overwhelm is common.
PDA is rather rare.
Jonathon Green's recent review explains all this.
https://www.pdasociety.org.uk/what-is-pda-menu/identifying-assessing-pda/

I have seen many many demand avoidant autistic children in my 25 year career, in many cases because of unsuitable education provision or inappropriate expectations. The ones with PDA are rare and very different.

I'm the parent of a PDA teenager. I only recently found out about PDA through attending a talk and oh my what an immense relief it was to finally understand what we had been living through since DD was born and how we have muddled through our parenting techniques.

It is difficult being a PDA parent. A lot of your parenting decisions will raise eyebrows because you have to parent a PDA child quite differently to non PDA children.

I would also have allowed one handed trampolining. I think the previous posters response saying it's OK we allow him to do that is pretty good. You could also add that holding the car is something that helps your DS manage better.

Unfortunately growing a thick skin is often easier than trying to explain the complicated reasons behind lower demand parenting.

Thank you! I did look at this but couldn’t find a provider that would see an under 5 year old even remotely near to where we live (South Coast). Do you know of any?

I'm a grandma, and I'm far more worried about my grandchildren hurting themselves in my care, than I ever was about my own kids at that age. It feels such a responsibility to be trusted with them. I'd have told my DGD to put the toy down, too.

I honestly think that it's far harder for anyone to understand and respond 'correctly' unless they're with the child for long periods and consistently, and have had specific training or intense reading on the subject, with the level of experience of the child to relate that reading to.

I taught autistic children in special schools for several decades, and when taking to parents who had similar issues with the grandparents, I'd suggest that they simply say:
"I know that this seems odd and against standard parenting, but this is the advice I've been given by professionals who understand this condition better than I do. So I'm following their guidance and hope you can support me so that (child) doesn't get confused"

A local autism charity held regular training sessions for families, so I also suggested that the parents take the GPs along to one of those.

Ask in the FB group! My son was 6 when he was referred and assessed, so I'm not sure.
When does your son turn 5?

Thank you. We believe he presents with a PDA profile, but I haven’t gone into full details on here of how he presents or why we think this. It’s not defiance or oppositional behaviour - many of the things that cause anxiety and meltdowns are internal demands, perceived demands, time demands etc. This isn’t a case of he just doesn’t like to brush his teeth or to be asked not to do something. This is crippling anxiety which means that if for example I turn the TV on (rather than giving him the control over turning it on) he will sob uncontrollably and scream that he doesn’t like TV and I must turn it off, even though he loves TV. I could serve up a big piece of chocolate cake and because he wasn’t given the choice of whether he wanted it or not he will end up under the table having a meltdown and refusing to eat it, despite loving chocolate cake. He will avoid going to the toilet for 6+ hours until he’s crying in pain, but still won’t be able to do a wee because the internal demand is too much for him, and the more he needs a wee the worse it gets. I don’t need someone to tell me he has PDA to understand that he clearly has PDA, however I have had several professionals tell me that they also feel he does have PDA. It’s in no way about being afraid to upset him - we upset him constantly because we have to keep him and others safe and live our lives and so much of that involves upsetting him. But since we started this new way of parenting he and we are so much happier, and his behaviour has become much less challenging.

Assume you have already seen and already following the advice on the PDA Society website. There is also "At Peace Parents" which I have found very helpful. There's a free webinar if you sign up but then you have to pay for additional webinars. There is even one for grandparents!

We have 2 boys with adhd and autism diagnosis. Grandads view is that they just need a “firm hand”. Nobody will tell you that I was a soft parent, I had firm boundaries that were very well communicated but you cannot smack the autism out. I picked my battles, sensory seeking or self soothing is not the battle to pick.

I get that grandma wants to be backed up but her meltdown is likely to be much easier to handle than his. Sorry mum but this isn’t something I’m prepared to spend the next several hours on and it’s far easier for all concerned to let him get in with it.

my boys are 19 and 22 now with excellent sense of humours. 🤣

I think your Mum is correct in that it is a less than ideal thing to be doing - both the 1 handed bit, and the hard toy.
However, it's something that, given the challenges you face with your child, you have chosen to let go.
There are going to be many occasions where the way you feel is best to parent your child differs from what sme will expect. I think a sentence along the lines of "thank you, but that's something we've chosen to allow" is probably something you are going to get to churn out a lot if people are genuinely concerned about what is happening. Obviously there will also be interfeering so-and-so's who might need a harsher response! Find a phrase that works for you. Own your decisions. Parent the child you have.

Just depersonalise the demand fof grandma too. Make it come from a third party authority. Written down.

Like a print out from the PDA society.

It will give her permission to be different to how she parented.

OP@QueryAutism We have provided my mum with resources that will help her understand, so look out for anything you have found helpful. I would also highlight that with the genetic links it’s not unusual to have older family members with autistic or ND traits themselves which may well have determined their own parenting styles! My own mum is very much a rigid thinker with rigid routines but luckily once on a subject of interest she will read everything in sight and will try to put actions in place even if she struggles to understand.

Thanks very much, will check out at peace parents!

Yep, definitely see ND traits in myself and my mum. She is a very rigid thinker and it’s almost impossible to change her mindset on anything. I recognise ND traits/behaviours in myself now and as a child, but I was just punished and shamed for them. I’m not going to do the same to my son.

PDA often comes with a high drive to be social and very verbal. It’s one of the reasons kids get labeled defiant when they’re actually autistic with a specific PDA profile.

Risk is usually a personal judgement, so chances are if it wasn’t trampoline related it could have been something else. Could you try to give your Mum some guidelines about how to approach a situation like this if it happens again?

Choices - great jumping! Could you go higher with both hands holding on? Shall I hold the car so you can see?

Or distracting and novelty - oh I just remembered we have bubbles, shall we see if we can find them? Who can blow the biggest!

I have a PDA’er and helping grandparents use different language to communicate has helped.

I think sometimes it helps to tell people like GM that you know with certainty that your child is Autistic and with that you have to pick your battles. But I see how you were trying to just keep them safe granny chops.

Once diagnosed you end up speaking with such confidence and assurance that you probably won't even question anything anymore. Part of you probably feels judged because older people can and do like to suggest it's all down to your parenting.

My application for assessment was declined because of masking and the school provided zero information to support the assessment. We were then forced to have a private assessment which cost £2k. It was so thorough though and included an in school observation. This gave me great confidence then. I even have a sibling who I want nothing to do with for other reasons saying my child was like he was because of me.

Ooft sounds hard, sorry OP.
I'd explain that he is learning to regulate and part of that is as adults not enforcing he 'complies' but trying to pick your battles as you say. If it's not a matter of life or limb it's not that important. His need to carry things around is common in anxious autism and PDA also adhd. I'd stop using these terms at all with GParents until and if he gets assessed. They are seeing compliance equal to him 'fitting in' being polite and safe. Explain adults can really help by just being alongside the child, mirroring what their play is, not making any demands, giving instructions etc. You could say that transitions eg change or starting and stopping are demands and something bouncing, carrying or rolling can help with.

@Mouldyfoot not sure why my kids being PDA diagnosed specifically makes any difference? I don't think parents (or SENCOs or other non clinical staff) should diagnose and share that as if it's a fact. That's all.
As I said, talking in needs and strategies and following any kind of guidance that works is good parenting.

I’m bemused that if both yourself and school think he may be autistic, why have you not gone down the diagnosis route? Because until you do most people won’t agree with your self diagnosis.
At 4 years old, with a younger sibling, your DS may well show behaviours that could be present in a child with ASD, but what you’re describing sounds very much like the vast majority of 4 year olds. It’s a crucial developmental stage where children begin to understand that they can have control of their own lives, hence lots will exhibit what could be seen as PDA - A formal diagnosis would be very valuable for your DS especially at school.
I think your point about your DS not liking change therefore you don’t expose him to change is a bit worrying. How is any child going to manage change in a positive way if they're never exposed to it?