Holiday with another family and behaviour of their ASD child

Oh, I know. Great kudos to those who are handling it.

The main reason I didn't have children is because I knew I would be useless in a complex needs situation; I have low energy and little patience. Best wishes to those of you facing these challenges.

How can you possibly be sure of that on the information given @Nowordsformethanks?

There is a significant overlap between the conditions.
From Tony Atwood and colleagues -
Certain behaviours, such as temper tantrums, irritability, defiance and aggression, are present in both PDA and ODD, complicating the diagnostic process.

Away with a friend and her 10yr old at the moment who isn't ND. He has moaned and disagreed with anything that any adult has asked him to do about 80% of the time. He also employs a very grating toddler like tone when whinging away. None of my kids have behaved in this way.

I've told him off a few times as has my DH. My kids are finding him very wearing. He doesn't seem able to stop.

When my friend brought his behaviour up I didn't want to say, well yes he's a whinging spoiled brat and you're doing him no favours by indulging it.

We've just spent some time away from them. To try to have a break from him. I will always be friends with my friend. Might not holiday with them again though!

I can imagine the extreme nature of what you're having to deal with OP. I'd try to find alternative accommodation in your case I think. It's not fair on you. This is your holiday. ND or not.

@x2boys well said. (I actually have a mini break down several times a week, but once I’ve finished I just have to dust myself down and look after DS, because no other bugger will!)

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

Yes, I think this is a very astute observation.

But thats what happens ,what else do you expect parents to do ,most of us just have to get on with it as there is no other option, and I know you're trying to Be kind but you have no idea how you would cope with a child with complex needs ,most of us can't afford to breakdown, what would happen to our children If we did?

I don’t agree @Nowordsformethanks - we already know the DC is autistic, so PDA - which unlike ODD does not involve choosing to disobey - is far more likely, as it often accompanies an ASC diagnosis.

I appreciate it can be hard to see PDA as a disability, and not chosen behaviour, if you’re not familiar with it.

Yeah cos we're all textbook cases of something. 😂

I think ODD is that sort of behaviour in the absence of any other condition surely? I'm not sure how you could call it ODD when you haven't even seen it for yourself. Do you earn much as an armchair paediatrician?

No it's "textbook" oppositional defiance and aggression towards any form of authority or control.

Totally agree with your first comment as that is my experience. Have to work FT too, no generous benefits and being a SAHP like people think. Doesn't help that to access any benefits at the correct rate, or to get an EHCP/special school place you nearly always need to go to tribunal. To access any form of healthcare you have to alway send 'evidence'. You Don't get time off work as a carer for planned appointments and there is no holiday clubs for children with complex needs too, so you use all your leave covering holidays and appointments when you could really do with having a week off when they are at school. Some parents don't even get the benefit of having a school place either. It's shit. I wish people with NT children would join us in campaigning as we are a minority and just get left to rot.

When people suggest accessing 'respite' I laugh.

It's a shame the holiday hasn't worked out, but try to think of the parents dealing with this all of the time. If I planned to go away with anyone I would forewarn people though. I'd probably avoid as I would stress about ruining someone's holiday. If they still came insisting we were being dramatic then that is their fault.

This sounds much more lack of parental boundaries than it does ASD issues

It’s textbook ASC with demand avoidant profile, to those of us who actually live with it daily.

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.

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.

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.

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.

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.

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.

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.

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…

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.

@upoutandin87

How's things today?

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.

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

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

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.