Family holiday - been given a list of things we can/cannot do due to nephew’s ADHD/autism

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Going away on a holiday abroad at Easter with my 3 siblings, their families and our parents.

We’ve been on holiday with them before and not going is out of the question as our parents are elderly and our kids are all getting older too so we want to take the opportunity to all enjoy the time when we can.

Separate accommodation. My nephew is 11 and has recently, after getting nowhere diagnosis-wise with the NHS and 2 private clinics, been diagnosed by a 3rd private clinic with autism and ADHD. This is after a long history of behavioural issues and other symptoms.

My sister in the holiday group chat has given a list of “rules” for us all, including our kids, about what we can and can’t do around nephew now that he has a diagnosis. She’s asked we all respect it so that it can avoid a meltdown. They include- no competitive games (my own kids are a similar age to him as are my other nieces and nephew). The kids like to do things like throw those little sinking toys into the pool and be the first to dive for it. No talking about certain topics such as school (he’s a school refuser) to him and have asked to share our own kid’s school stories about school away from his ears as it upsets him when he hears how other kids are getting on And no talking to him when he has “quiet time” - so for example he will ask for an hour by the pool to be left alone and we all have to respect it and brief the kids as well. This might be a struggle for the cousins as some are younger and will want him to play and won’t understand to leave him alone. When we go out for meals together we can’t eat outside as nephew prefers to eat inside.

I don’t really know how to feel about this. I myself have a disabled DS but with a physical disability and we’ve always tried to ensure his symptoms and needs don’t impact on others - we just ask people to be forgiving if we have to cancel things, but there’s certain things my DS sometimes can’t do or join in with and I’d never stop the other kids from enjoying what DS can’t enjoy.

Not an AIBU as such but how would you respond? I want my sister and her family to have a good time but I’ll be damned if I’m told I can’t eat Al fresco with my mum and dad (who love Al fresco eating too) whose last holiday it will probably be!

YaaDDDnba OP. It's unfortunate that it's already paid for, I would be fuming. Holidays are so important for everyone. I get that there are difficulties but telling small children to police their games and conversations is just ridiculous. If your DN requires quiet time then he needs to go somewhere quiet, not the pool, and this needs to be managed by your DSis and her DH. Totally agree that she's trying to move that responsibility onto others so it will be less disruptive for her / DHs holiday.

Strategically I think you should stay out of it though, because it sounds pretty likely that your DB will raise it. Do your own thing, but stay out of it for a quiet life.

Well that doesn’t sound helpful to your sister of nephew at all. Did they not offer any therapy or anything along those lines for them?? If they put it purely down to low self esteem, you’d think they would suggest something more concrete. And the NHS and two private clinics all said the same to them?

Oh I am sure she will be taking action herself but I don't think avoiding any meltdown is realistic and it doesn't actually help the child in the long run bearing in mind we have to help them to develop skills to navigate the real world outside. It is better, I think, to teach your child to recognise when they are struggling and what coping tools they can have and use to manage this rather than trying to eliminate all possible causes of a meltdown. Some of the requests are reasonable or have an element of reasonableness to them but I do think that all children's needs have to be considered not just the ND child's needs.

OP having read more of your posts I do wonder if what isn't helping your mindset is the previous reports before the diagnosis. I have a feeling you maybe don't believe in the diagnosis?

Maybe it would help to in some sense ignore that the requests are because of ND and just view it as these are things that will upset this child and we don't want to upset a child. Balance that with these are things that would upset my own children and we don't want to upset them. And then work out a happy balance. For example they could talk about school when the child isn't around if they want to discuss their achievements. I don't think they should be barred from any mention of school at all - your nephew has to expect the word to crop up sometimes in life. But there is a big difference between a causal mention of school and discussing in detail achievements. And I say that less as a ND vs NT thing and just a being sensitive to others thing. My ND child excels and it's something she would like to talk about because she struggles in other areas. Other ND children are school refusers. So it isn't just an ND thing if you see what I mean.

Oh I am sure she will be taking action herself but I don't think avoiding any meltdown is realistic and it doesn't actually help the child in the long run bearing in mind we have to help them to develop skills to navigate the real world outside. It is better, I think, to teach your child to recognise when they are struggling and what coping tools they can have and use to manage this rather than trying to eliminate all possible causes of a meltdown. Some of the requests are reasonable or have an element of reasonableness to them but I do think that all children's needs have to be considered not just the ND child's needs.

OP having read more of your posts I do wonder if what isn't helping your mindset is the previous reports before the diagnosis. I have a feeling you maybe don't believe in the diagnosis?

Maybe it would help to in some sense ignore that the requests are because of ND and just view it as these are things that will upset this child and we don't want to upset a child. Balance that with these are things that would upset my own children and we don't want to upset them. And then work out a happy balance. For example they could talk about school when the child isn't around if they want to discuss their achievements. I don't think they should be barred from any mention of school at all - your nephew has to expect the word to crop up sometimes in life. But there is a big difference between a causal mention of school and discussing in detail achievements. And I say that less as a ND vs NT thing and just a being sensitive to others thing. My ND child excels and it's something she would like to talk about because she struggles in other areas. Other ND children are school refusers. So it isn't just an ND thing if you see what I mean.

Yes he got therapy in school which went well at first but then the therapist went off on long term sick and he didn’t like the person who replaced her it really set him back and now he’s v averse to therapy at all.

I completely agree with this. It helps nobody. Mood disorders need to be treated differently to personality disorders which need to be treated differently from disabilities such as ADHD/ASD

For starters, putting someone (especially a child) on the wrong medication could have serious consequences. The wrong diagnosis could exacerbate a condition, not make it better

Correct. My brother was very clearly PDA and my mum fought tooth and nail until she was given an ASD diagnosis for him. This meant any time he displayed pathological demand avoidance (“I don’t want to do that, I can’t do that, I won’t do that”) it was “Because of his ASD you must not ask him to do these things/he can’t be expected to.”

This solidified for him that anything he didn’t want or enjoy, anything he found difficult or challenging, he didn’t have to do. This grew and grew until he was many miles regressed from where he had been pre diagnosis.

Self diagnosis and online asd tests seem to be backing up a lot of people's beliefs that they or family members are autistic.
But experts who have trained are then told they are wrong .
What's the point in seeking a diagnosis if you won't except if you are wrong .
It's not saying nothing is going on and no further investigation is needed . It may just mean it's something else.

Did your brother eventually get the help he did need ?

Very true. I’ve encountered a lot of people on here, and some in real life who tell you straight away “I have undiagnosed ADHD” or “I have undiagnosed Autism”

What does that even mean?!

The problem is as well that many, many of these things have vastly overlapping diagnostic criteria/symptoms/displays etc. So people are saying “I have serious problems with executive dysfunction, I believe I have ADHD” not then realising that executive dysfunction comes hand in hand with depression, anxiety disorders, PTSD, OCD, BPD, BLPD to name just a few examples.

No, my brother did not as far as I know. I distanced myself for various reasons but the last I was involved he had became completely housebound and nocturnal, my mum became his full time carer. He actually had excellent exam results in mainstream education pre diagnosis in his late teens.

Exactly! And the experts understand this . And probably get frustrated with people insisting they have one thing when the evidence could point to several things . So in the end the help that is needed never happens .
That's very sad. Being labelled at a young age must influence the person's behaviour and limit what they believe they can do or cope with. And as you have said if it's the wrong diagnosis then they never get the correct help or medication that may infact improve their lives.
But Google knows best ! 😆

I don’t want to derail too much but there is another thread running now about someone questioning why they don’t feel like they have too many close friends. She describes herself and she seems fairly regular to me. Nearly everyone on there has rushed to tell her she may be ND and when I’d try to say that it isn’t the answer to everything and that she should perhaps just try to find people she is more compatible with, I have been labelled as ableist and unkind when the OP HERSELF didn’t give any indication that she believes herself to be ND either.
I then had it suggest to me that I MUST be ND myself FFS. These people are doing those who are genuinely ND no favours whatsoever

Thing is, OP says this behaviour has been going on for a long time & DSIS refuses to help him learn coping mechanisms & would rather everyone else bend to his will.

You have to help them help themselves, it's not optional & yes it can take a long time. But she's not doing that, she's making it a performance which helps no one.

It's the answer to everything on here.
Husband moody and doesn't want to socialise with my family = he must be autistic.
I find it hard fitting in or being motivated =autistic/adhd
Any bad behaviour from spouse=autistic
I could go on and on...
No wonder the waiting lists are insane for the NHS assessment.

Thing that annoys me here is that I am ASD and have many, many friends. Not because I’m exceptionally sociable, but because we are all very understanding and lovely about each other. Need to cancel last minute? That’s fine, I love staying home and cancelled plans. Don’t talk to me for a few months? You’ve got your shit going on. When we get together we can all be weird and infodump together or be quiet or literally what the fuck ever. Finding your tribe is key. None of us went looking for each other, just followed our natural passions and interests and latched onto each other without even realising we are all clowns of the same circus. Beautiful.

That is beautiful and I find the insinuation from some that everyone with any kind of ND finds it hard to make friends very generalised!

Very much through my prism of having a son with ASD, I don't think they're asking for much tbh. Just a low demand holiday for their son which they know will help avoid meltdowns (which wouldn't be nice for anyone).

I suppose the test is to what level they enforce it when you're there.

Pre covid it felt like every thread was diagnosing people as bipolar.

MIL is nasty - must be bipolar
Friend is nice one second and nasty the next - must be bipolar

As someone with bipolar disorder, it felt very frustrating. Especially as 99% of the descriptions would not have met diagnostic criteria, focused heavily on traits that neither I nor many of the others I know with it display at all.

Nowadays I rarely see it suggested. But ADHD or ASD is for everything.

I have a DD with ADHD who has been quite obviously so since she was very little (enough that the GP had zero doubt that we would definitely be needing the shared care agreement I asked for in advance of the diagnostic assessment!)

Losing count of the number of parents I know who are asking for advice on where to go for assessment. Kids I have known most of their lives and have never displayed any ND traits as little ones but are now finding GCSE year stressful and because they occasionally forget their pencil case the parents are wondering if it might suddenly be ADHD.

Well it is for the sister. The fact is, she’s not being reasonable in the adjustments she’s asking for, it’s more like ‘let’s make sure the entire holiday of16 other people revolves around my son’

He was not diagnosed by the NHS or by two private clinics? Were they just shopping for a diagnosis until they got one?

To be fair though even if it was diagnosed as PDA, which autistic people can also have as a side, it sounds like she would have had a similar response- he cannot do it because he has PSA. So actually it's less the diagnosis and more how someone reacts to and works with the diagnosis. Is it a cant focus or a can focus - what can they do and how can they best do it, with adjustments that are reasonable

No No and No.

Sorry i think this is outrageous to ask everyone to anticipate what the conversations will be, ensure certain subjects arent talked about and tip toe around someone all day long which is what is sounds like.

Holidays are meant to be care free and relaxing in a way that's personal to you and this doesn't seem to be matching you or your children's idea of this.

Im actually flabbergasted at the audacity of your sister listing these things.

Honestly you've committed now which is ashame but Id probably be letting her know that whilst you will not be going out your way to trigger nephew you are certainly not going to change your daily plans or stop natural conversations either - she really should not be holidaying with people if she needs certain types of rules to be followed.

This seems a case in point for what I'm saying about the importance of balance and, as a parent, helping ND children to navigate the world rather than expect the world to completely bend/avoid situations that will be hard. Obviously it's all a spectrum so some children will have serious developmental issues and that's very different to a situation such as your brother. I'm talking about people like your brother - good exam results etc. He's like me. But I have coping mechanisms and get involved. I make adjustments for myself I don't avoid hard situations or expect others to do everything I need only to reasonably adjust. And through that I manage a successful career. Yes it's tough but sometimes things are hard - whether ND or NT.

Exactly this. You may not force your own child into a shop. You help them to recognise what they struggle with and how to cope and manage the situation. You don't tell everyone they must avoid shops entirely because of your child.