Holiday with another family and behaviour of their ASD child

Like the old saying goes, always write what you know. Timmy is…heavily drawn from someone I know very well and love very much 😂

You have summed that up beautifully

@EveSix Those struggles you list are awful and upsetting but they cant be fixed by the OP can they?

All the OP can do is protect her own kids and explain her stance of needing space in a kind and respectful way which is what she absolutely should do and there is nothing for her to feel guilty about there.

I would also question whether she's actually better at home if she's been expelled from school and her brother wants to move out. To be fair, it doesnt sound like her behaviour at home is stable either.

This thread really serves to highlight the fact that you often can’t win as a parent of a child with developmental disorder.

If the OP’s friends had worked out how to manage their child’s needs and come on holiday armed with a strict schedule and a load of visual reminders, safe foods and (heaven forfend) an iPad and headphones to help, the OP would be here talking about how the child is absolutely fine and and the rituals and routine were getting in the way of a relaxed holiday. Then a load of posters would pile in to talk about not needing labels and something ridiculous about the 80s and how everyone wants their child and by extension themselves to be unique and in need of special treatment.

Or you get this side of it, also implying that they’re doing a crap job and don’t care about anyone else’s holiday.

The biggest myth about parents of children with additional needs, particularly the more complex ones, is that we are some sort of breed apart from the people who ‘couldn’t do it’: selfless and willing to make whatever sacrifices are needed to in the interests of our child without even thinking about ourselves. I really, really wish this was the case but sadly I’m as selfish as ever. Giving birth to a child with needs does not cancel out the very strong pull of sitting next to a swimming pool in the sun, or drinking rosé and talking rubbish with your friends whilst the kids play. Sometimes you chance your arm in your own interests and it goes really badly wrong. They need to act to resolve this, but this doesn’t necessarily indicate shitty parenting. I’m pretty confident I know what I’m about with parenting my son, and just last month I ended up fully clothed in the sea with a large audience whilst he called me a c**t and tried to drown himself.

The word clusterfuck was made for demand avoidance and what happens when you make one mis-step and can’t get things back on track.

@EveSix

Yep, 'entirely possible that she is better regulated at home', evidenced by the older son having to have locks on his door and wanting to move to his grandparents home. His needs are being sacrificed to facilitate his sibling getting her own way. Don't see your heart bleeding for him anywhere in your post. This is how people pleasers and apeasers are created.

Friend’s name, I am not prepared for my DD to be slapped and sworn at. We will be spending some time doing things separately. Please give us space.

maybe via WhatsApp if you think she may twist things.

It isn’t all about the friend. Op and her family are clearly pissed off at what is happening on this holiday, and they have every right to be. The reasons behind the kid’s behaviour don’t negate the impact of it on those around them.

The parents know what their daughter’s behaviour is like - even if they thought she could manage the holiday there is no excuse for not being honest with their friends before they spent booked annual leave and spent money on this holiday.

Like Tiny says, there is virtually no support for families with a child with a PDA profile, let alone for the child themselves. There'll be a diagnosis with a reference to pathological demand avoidance and that really is it. It is then up to parents to reach out to charities, read widely and try to pick their way through what is very much a barren landscape in terms of support and provision.
Many schools, including specialist placements will categorically decline places to children with this profile. In my own professional experience, it really is down to the luck of finding the right adults in education: one of my students last year had been crashing through primary school with this diagnosis for the last few years. Previous teachers had pretty much ignored the ASC diagnosis, let alone engaged with the PDA profile, and plumped for standard behaviour management strategies which proved really unsuitable. I read the report prior to them starting my class, saw the reference to PDA, and was able to, through liaising with and learning from their parents (wouldn't assume that the strategies I use for my DC with the same profile would be applicable), implement strategies which enabled this child to engage with learning and the classroom environment without being completely overwhelmed by percieved demands. Completely hit and miss though, in terms of who your child 'meets' in education.

This thread, honestly!

OP, if you were only really looking for advice on how to extract your family from this arrangement, you could have framed the question in such a way that you did not need to go into the ins and outs of your friend's parenting and inadvertently invite lots of really unhelpful comments from posters who have very little idea of what your friend's parenting is actually like.

I read your OP and wondered instantly how much of your friend's explanation was
a) your interpretation of what your friend actually offered by way of explanation ("We are trying to implement a low demand strategy for x, y and z reason" is heard as "We can't say no to her")
b) you paraphrasing a more nuanced explanation of your friend's parenting strategies
c) your friend giving you a shorthand, perhaps a bit flippant, version of their approach 'between friends', thinking you'd 'get it' as a parent of an autistic child?

It's entirely possible that your friend's DD really is much better regulated at home because they have put in place the necessary accommodations, adjustments and boundaries where appropriate. Maybe they genuinely believed that a holiday, inherently low in demands, might be OK, while possibly underestimating how much the new environment and new faces would impact her. Some dysregulation and meltdowns may be unavoidable, as her older siblings can attest to, as we cannot account for every eventuality. This is especially relevant in school, as, with the best will and strategies in the world, there are so many variables, especially in a mainstream primary, that simply cannot be controlled for.

PDA is a pervasive neurodevelopmental condition which can present in a variety of ways and change over time as a child grows. A PP suggested viewing your friend's behaviour as a panic attack: they're spot on. Others have suggested that the inability to regulate effectively is similar to that of a much younger child, with the added implications that cognitively, it is much harder to learn from experience and embed this learning in a way that informs subsequent behaviour. Many children and young people internalise the anxiety they feel around demands through self-harm ‐this can include the experience of demands which are self-imposed, such as looking forward to doing something they know they enjoy. The perceived demand to enjoy something is simply too much and causes acute anxiety. Hence, experts do often advice low demand strategies in order to maintain regulation, and advise that cognitive nudges take place during times of low anxiety and secure regulation. Low demand isn't 'no demand', but there are many strategies of lowering demand while maintaining boundaries which may, to someone who hasn't had to tread this path, appear to be simply throwing in the towel and letting the cards fall where they may. But it almost certainly isn't.

Your friend is probably exhausted, burnt-out and by now used to judgement and parent shaming from all sides: school, her own family and her own social circle. Poor woman.

This is well worth a watch. This is what demand avoidance looks like, and what it doesn’t look like… 😁

The whole series is really great if you want to understand a bit more about what’s tricky.

This^
just look at it calmly: they probably hoped that they would be able to manage her behavior but it didn’t happen.
I think you need to work out plan B and rearrange the holiday as much as possible.
It doesn’t mean not to do things with them any more but obviously their DD is not handling big groups very well so I won’t plan joint holidays in the future or anything what requires to share accommodation.

It’s good to ask questions, more people should ask questions! It depends on a lot of factors. Like all things ASD, demand avoidance is part of the person rather than a symptom of something, if that makes sense. My son has ADHD too. When he is medicated he is still his lovely self, but without those particular symptoms that make his life more challenging. Autism and by extension demand avoidance is part of him. I cannot even imagine who he would be if he wasn’t the autistic version of himself because that’s just who he is, if that makes any sense.

If the demand avoidant person has sufficient capacity and is supported well then there is every possibility that they will learn in time to recognise and manage the anxiety and need for control, and to recognise when they need to step away and regulate rather than losing the plot. If they don’t have that capacity then they’ll always rely on someone else to manage that for them. My son is 13 and at the moment he very much relies on others to manage his environment for him, but I have moments where I think he is starting to understand that if he wants to live in the world, go to the pool etc then he needs to recognise he’s not the only person who has needs and rights.

It’s also worth noting that there is almost zero help available for children with PDA. It’s not often diagnosed, more often thrown into an ASD diagnosis report as ‘demand avoidant traits’ and you’re on your own. I like speaking about it. The only way I knew PDA is because I once watched a TV programme where a little girl was diagnosed and it stuck with me. When I saw ‘demand avoidant’ on something related to my son I took it upon myself to read, watch, seek support from charities and implement a parenting style that works. This child’s family will likely have had no advice or support, just a piece of paper with a diagnosis and a parenting course that won’t work for their child.

It's your holiday and your children are being physically and mentally abused. If moving accommodation is a possibility, then do that. If not, speak to the other parents and tell them that you want to holiday separately in the same location because you don't want your children hurt by their daughter. I appreciate that it's difficult and stressful for the other family but your primary responsibility is to your own family and to keep them safe.

I'm not disputing any of that, but two wrongs don't make a right.

Really, the cause of the chil's behaviour is irrelevant.

It's ruining OP's family holiday, and "friends" failed to give adequate forewarning of what a shared trip would be like. That's poor form and OP is justified in being angry.

The husband fucking off to the beach every day is really taking the piss. I'd call him on it.

Part of it is simply we're hearing these stories more because of SM. Everyone on this thread is now aware of this child's fairly extreme issues. In the 1980s we'd still be ignorant of them.

It's not the whole story of course, but part of the perception of it at least.

The incidence of allergies and asthma has also risen dramatically since the 80s by the way. Is poor parenting responsible for that too do you think?

The bottom line is we don't know all the reasons for these increases. Better diagnosis is part of it obviously.

Op is overwhelmed. She went on a holiday. Most people expect some downtime, relaxation or fun. But her holidays have turned out to be very stressful. Her dd has been slapped and called bitch and friend's response is we don't say no to our dd. She could have at least apologised to the slapped 15 year old girl. Her parenting might be good but she has not taken any responsibility for the pain caused to OP and her daughter, so OP is not unkind to express her frustration towards her friend. Also, why didnt friend tell op about her dd not accepting no before they all went on a holiday together?

A range of things which are pretty obvious when you give them some thought.

Better infant survival rates/advances in neonatal care.
Fertility treatments and the increase in maternal age.
Theres also a rising theory re industrialisation of food and our modern diet and environmental factors more generally.

True, but behaviour management strategies take time to figure out and this child is still very young (6 or 7, OP mentions both ages so I'm not sure).

Diagnosis still seems to be in progress as OP mentions suspected ADHD. With lots of support things will hopefully improve for this family. At the moment the parents seem to be in survival mode.

She's not talking about Victorian asylums or people locked away in homes in the early 20th century, she's talking about the 1980s.

friends and family, work mates and acquaintances would have spoken about such kids and their behaviours but they didn't seem to exist, at least not to the same extent they do now.

What happened to create all these ultra difficult kids? Bad parenting?

Manipulation is an unhelpful word. Children are evolutionarily developed to be good at getting others to meet their needs. They absolutely have to be because they are intensely vulnerable and not useful to the group. So being ‘manipulative’ is a completely normal and natural survival skill- not a sign of something of wrong.

It might not be helpful, but just like other children (and people) for that matter. If you get your own way each time you behave a certain way it just reinforces it. Which is probably happening here. Personally I don’t think it’s helpful to place every undesirable behaviour as a symptom or consequence or ND as it’s suggests they can’t change - the method to get there might look different than for NT children but they can change and carve new profiles for certain behaviours - ie by not making them rewarding.

This is of course going OT. But I think not taking parenting and behaviour management strategies into account is harmful for those parents doing their very best to manage and work with their children.

Genuine question - what happens to people with PDA as adults? Does it tend to get better?

I think ultimately it's obviously all very hard for the parents of the child but it isn't the problem of OPs children and they should not be having a ruined holiday and getting physically assaulted and their belongings damaged out of misplaced "kindness", and it's completely unfair of the parents to have that expectation.

@calamarisandwich Totally agree.

Does any diagnosis excuse this behaviour?

A parent with no boundaries is a) unsafe b) not a parent.

A lack of boundaries is going to cause far more dysregulation to a child than a change in environment. How is handing power over to a child ever going to end well?

I hope your priority is to your family and their safety not your friend's feelings; someone needs to be a parent here.

Manipulation is an unhelpful word. Children are evolutionarily developed to be good at getting others to meet their needs. They absolutely have to be because they are intensely vulnerable and not useful to the group. So being ‘manipulative’ is a completely normal and natural survival skill- not a sign of something of wrong.
For most children they learn their caregivers will meet their needs (if not their wants) and that they will be kept safe and so the survival tactics reduce and only come out when children feel anxious or unsafe (why your little one may become a nightmare when mum is sick, theirs a new baby, they start school etc!).
For ND children a combination of their needs not getting met consistently because the world is less and friendly and also caregivers being less well attuned due to either their own ND, the unusual needs confusing them or social pressure means ND children often have high anxiety and low sense of safety. So their survival mechanisms are in absolute raging full swing.
Getting your child to behave can then need to look like making them feel safe.
Clearly the parents aren’t managing that at this point. But many parents of ND children take a long time to work out how to do this because typical parents really doesn’t work (and can decrease sense of safety, making behaviour worse).
PDA is ultimately about anxiety. So of course this makes it harder.

None of this means the OP needs to stay on holiday with this family. But let’s not demonise children either.