Holiday with another family and behaviour of their ASD child

[upoutandin87]

Currently on holiday with my family and another family (old friends) they have 2 older children same age as my kids and they also now have a 6 yr old. We have holidayed with them before but not since the youngest was born. Youngest is ND (autism and suspected ADHD). My son is 15 and autistic so I know about ASD but there DD seems out of control and we can't cope with it. She swears spits hits and throws furniture if she doesn't get her own way - there is no routine and she basically gets what she wants - she slapped my DD earlier today and called her a f b because she didn't want to go in the pool with her - my friends answer to this was you cannot say no to her - if you don't do what she wants she kicks off so we have to let her do what she wants. My friends DH and 2 older kids can't cope with her so they go to the beach and take my 15 yr old with them - I prefer being by the pool so I stay with them and my DD 17. We honestly don't know what to do as our holiday is being ruined by a 7 yr old. She threw my bag in the pool yesterday and I was fuming. We are trying to do stuff without them but they seem to be constantly appearing - they never raise their voice at their DD or tell her to stop as negative language makes her worse. Last night their 15 yr old told my son that she has been permanently excluded from her primary school and she currently has no school place from September - I was aware she has had several exclusions for violence but only short term exclusions but her parents have not mentioned to us about the exclusion. My DH wants us to cut all ties with them until they start parenting their child properly. We are only 3 days in to a 10 day holiday and are tempted to fly home to get away from them. I feel so bad as I am an SEN parent myself but they won't take any advice from us about maybe having a routine and setting boundaries. I so feel for them as they are completely broken by her behaviour but I don't actually know what I can do to help.

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.

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 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.

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.

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.

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.

@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.

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 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.

You have summed that up beautifully

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

It also bears repeating that for those thinking it's all nurture not nature, the child has been excluded from school. This is not as easy as some think. In the same way, with applications for external support the school has to jump through a series of hoops, the school cannot just exclude without showing that everything they've tried has failed. That doesn't mean the teachers are necessarily crap, in the same way the parents aren't, it does mean that the child in question needs significant support and specialised interventions. A parenting course offered for home or a Learning Plan given at school clearly don't cut it.

The OP incidentally has only written 3 posts out of 312.

They could have ‘won’ by being completely honest with OP and her family before committing to a joint holiday.

It will depend very much on the individual. How capable they are or not in all sorts of areas of life.

I can only really give the examples in my family, but what sticks out is being in control of their own destiny. The more intelligent and capable the person, the quicker they are able to make their own choices and this is a game changer.

One of the most difficult things, I have learnt, is the verbalisation and therefore acknowledgement of those present that there is a rule. It creates an urge to not "kowtow" to it, or to the one who enforces it.
However, as it has been explained to me, if the "rule" comes from a third party, and is not communicated as a direct order, rather as an understandable and reasonable argument to do something in a certain way, then this is not as triggering. This explanation appears rational and something the person would have done anyway, had they been in charge. In reality they feel like they are not following orders because they are doing exactly what they would have done anyway in this circumstance. I have learnt this from my highly intelligent teen.

Going back to what happens when they get older. I think it depends a lot on how much self awareness they have. Do they have the capabilities to select an occupation which fits them well? Can they adequately compromise enough within friendships or relationships?
Abiding to rules from the state, for example taxes and such like are completely different to being told what to do.

With other family members, who were Autistic with severe learning difficulties
"The man" ( seems sexist now but was of its time) was an unknown entity who controlled life. He decided the rules of society and would be "cross" should things be done incorrectly. "The man" would be cross if you played with the fruit at the supermarket or ran around the shop. He decided lots of things without ever showing his face and he permitted our parents to get out of saying no, yet effectively achieved the outcome of a no. There was no chance of my sibling contradicting "the man", he wasn't there to argue with.

@upoutandin87

How's things today?

This. All ND are different. Imagine how crap it is for them as they have to put up with it all of the time. Some kids with ASD have PDA which is really challenging and there is not much help, and the help out there tends to just tell you what you already know and have tried.

See what you mean, but I’m not sure. Sometimes people are a great deal more tolerant in theory than they are in practice!

This behaviour seems to have come as a surprise to the OP, so it’s not something they’ve seen before in a child they presumably know. If, upon being invited, they would have expressed that they were concerned about their child’s ability to take part in the trip without causing disruption the other families may well have been at pains to tell them it was fine, they didn’t mind, have an ASD child etc. When we feel we have to turn down invitations because our son’s needs would require too many accommodations from others they’re generally very insistent that they don’t mind, it’ll be fine etc. These days we hold our ground, but we’ve been doing it longer and have learned from experience that people often have no idea what they’re agreeing to and are very keen to be inclusive and helpful, until it all kicks off…

That sounded like I was being unkind about people wanting to be inclusive. Not what I meant. It’s great, and sometimes it’ll persuade us when we’re unsure. Other times we have to accept that people think we’re over the top.

Again, you’re looking only at the impact on the parents, not on the impact of those around them. There is no excuse for them not making OP aware of her behavioural issues before they booked a holiday. With that information OP and her husband may very well have decided not to agree to a joint holiday, and spent their annual leave and money on one they would actually have enjoyed.

Difficult to change accommodation now I would think. Personally I would just advise that your family are going to go their own way on the holiday and do your own thing. Be honest and say none of you can cope with the behaviour and why the hell should you. Their choice to deal with their child as they see fit your choice not to have to put up with it.

This sounds much more lack of parental boundaries than it does ASD issues. I'd not go on holiday with them again, that's for sure. And I'd tell them why.

It's pretty clear from this and other anecdotes on MN that we need far more government research into potential therapies for ND people and vastly more infrastructure to help families. For severely affected children and adults, it's unrealistic that untrained parents can manage them 24/7 for decades on end. I would utterly break down in a matter of weeks and hats off to those who don't.

That said, the friends were really rude not to forewarn the OP and let them make an informed decision about a joint holiday. Travel funds and annual leave are too precious to be squandered.

I don't understand the boundaries arguement when the parents have other well behaved children though. I used to blame myself for my youngest and had to remind myself I have another child that has never been in trouble at school and is very well behaved. I think being on MN reading post from people who know fuck all about ND but seemed to have strong opinions about it didn't help.

I think we are roughly in agreement actually. On almost every post I’ve made I’ve said that the parents have made an error and ought to be correcting it immediately. I’d go further than you have and say that I don’t think they should have offered the decision up to a group who would feel compelled by a sense of what’s right to persuade them to come on to the trip, probably without any real sense of what they were letting themselves in for. It’s ok to risk it for a day at the park, not so much an expensive holiday.

But it’s done now, and needs sorting. I don’t think the OP owes anyone anything and she should act in the best interests of her family.

As someone who’s walked this road, reading some of what is being levelled at these parents it’s really hard not to leap to their defence and try and give some context as to why this might have unfolded as it has. I’d lay good money that the parent who has washed their hands of the child was the parent who applied significant pressure for the trip to go ahead. I’d bet the one left dealing with the child has been worrying for months about it and didn’t think it was a good idea.

In my opinion, given that these people are supposed to be friends, the best way to rescue the situation would be for the OP and other friend to take the mother away from the situation and give her a drink and the square meal she probably hasn’t had since they arrived, ask her how she’s doing, and talk with her honestly about what’s going on and how it’s affecting her and the group. Get it all out there and sort something out rather than letting resentment and anger build.

The child will be highly attuned to her carers and environment and will be picking up on and escalating her behaviour due to the perceived demand of stressed parents and her mother’s stressed, angry friends. If the tension was broken with an honest conversation and a solution I’d bet the situation would improve considerably. But the OP is not obliged to do that on her holiday, and I would never suggest that she was.