To wonder about the OP whose daughter had ASD and she was going zero tolerance any associated behaviour for the happiness of her other child, herself and husband.

[Shestolemyboyfriend]

I remember a poster who had a daughter with Autism and was having meltdowns due to beig overstimulated al lot of the time. I think there were issues around misophonia around eating , control over the TV etc and who could be in the room at any time. The OP decided that the needs of the few were outweighing the needs of the many and had decided she wasn't going to engage with any of the behaviour any more as it was making the rest of the family miserable. She had everyone divided but it sounded so hard for the whole family with a seemingly no win situation. I wonder how she fared and how it all panned out. I have a friend in a similar situation and she is doing the same with her son, after some kick back the dynamic is totally different. I just wondered how it worked for her.

Thank you for taking the time to reply.

As I said upthread, I’m autistic myself so acutely aware that I might miss nuance sometimes, or be too black and white with my thinking.

So I appreciate a measured response rather than random name calling and insults.

I do think we might be talking at cross purposes though. Maybe my previous comment was misleading, I don’t know. So I’ll try again.

Do I think everywhere is accessible for wheelchair users? Absolutely not.

Do I think that accommodations can always be made that are realistic and useful? Also, sadly not.

My previous comment wasn’t intended to suggest that wheelchairs users have no barriers. In fact, I think I said explicitly in my follow-up comment that I know how hard life is for wheelchair users. In so many, many ways.

I also said I don’t speak for wheelchair users and I acknowledged that even with 40 years+ of providing intimate care for wheelchair users, there are things that I just miss. And that’s because I’m talking about secondhand experience which can NEVER be the same thing.

The point I was making which actually, you’ve just demonstrated with your comment is that generally, there tends to be more sympathy and understanding for a wheelchair user than someone with an invisible disability. The example you gave of a solicitor offering to put planks up to make their office accessible. I imagine, and I’m obviously guessing, that it felt rather degrading and that it was in no way an appropriate or suitable solution. In this case, although the solution wasn’t actually any use, there was the willingness to try and help. And that’s what I was trying to convey - the general attitude seems to be very different. Even when the suggestion is no use at all.

There are scores of reports about how invisible disabilities are ignored and treated differently. Many people just refuse to acknowledge they are real. And this isn’t a subjective comment from me, I’m referencing actual reports and studies.

So that’s what I was trying to illustrate. There was no intent to diminish the shit you have to deal with every day. And there was certainly no intent to suggest that life is a breeze for a wheelchair user!! I know that it really really isn’t.

What I was referencing was that ramps, lifts, lower work surfaces etc all exist in SOME places already. And generally, there’s more of an appetite to help someone who has a disability that’s visually obvious. Not everywhere and not everyone, admittedly.

By comparison, there are very few accommodations already in place for ND people. Things are slowly starting to change but it’s often viewed as a luxury. Just look at the opinions on this thread - there’s a ton of people telling autistic folk that we just have to get on and deal with it. That our disability doesn’t exist.

So that was the parallel I was clumsily trying to draw. The intent was to suggest that people don’t care about neurodivergence and that the attitudes are different compared to other disabilities.

If you feel that I was trivialising the things that you struggle with then I genuinely apologise. Because that wasn’t the intent - and I see every day how hard things are when you don’t have full mobility.

I was just in with my mum just now, so I asked her what she thought. Her view is that people have always been great in trying to help where they can. Shes never felt judged or disbelieved. She thinks that people are generally sympathetic, and are often mortified if she can’t use their facilities because they haven’t made it accessible.

I know that’s her experience and everyone’s experience is anecdotal. I also know that other wheelchair users may have different views.

I didn’t mention this earlier but I’m also a qualified ski guide for the British Ski Club for the Disabled. We have encountered huge barriers when going on holidays with groups of skiers. I only mention this to underline the things I’ve seen people have to battle, and the enormous challenges that still exist everywhere for many, many wheelchair users with varying degrees of disability. I don’t pretend to truly know how hard it is.

This has turned into a very long reply because I know it’s hard to judge tone from the written word. And I’m trying really hard to explain what I meant while also trying to say that I completely understand your experiences may be very different to what my mum and dad both had.

If you feel disbelieved by the general public, if you feel that others don’t care that you’re disabled, if you feel that most people don’t care whether any adjustments are made for you then I’m really sorry that you’re experiencing that. Because it’s horrible and no one with any kind of disability should have to feel the need to prove that their disability is real, or that they really do need help.

@SecretSoul thank you for your post it's soo balanced. I think you are right, everyone has so much experience of one side or another it can be hard to reach a middle ground.😀

What are you talking about? The poster wasn’t mean in the slightest!! Why are you attacking her for being mean? Completely uncalled for.

I think this post is important because it shows an adult in the position of having to balance differing needs. So many people are sharing experiences where they are in the "right" and others were "wrong" - it is good to see someone show how they tried to strike a balance, the subsequently judged that they hadn't made the best choice. I hope you are able to repair your relationship with your eldest as well as support dd3.

Grandparents can also need to be aware. We've had to lock, front and back doors, make sure that a little one doesn't climb out of the window. Manage emotions, balance it with siblings who deserve a fun visit.

@FloofyBird So haven't you ever heard of 'trainer' as a profession that is related to humans? At work we have various 'training programmes'. Are we dogs? Our kids get trained, we get trained. There is nothing wrong with 'training'. It provides a framework to help achieve certain objectives. You train for a marathon, so you can achieve the objective of finishing a marathon. You train in public speaking, so you can deliver a speech others find useful and comprehensive. And if the objective is to help autistic kids navigate the neurotypical world easier, it's good. There is already 'training' to society to understand better neurodiversity so they can understand us, neurodiverse people, better. Hope this helps.

Thank you @Love51 Unfortunately after a year of peace, it has happened again. This time we totally have dd1's back and are trying to support her as much as possible. She now hates being at home which breaks my heart. I have tried to encourage dd3 to forgive (whatever dd1 has done) but she seems stuck. Just wants someone else to blame for her unhappiness I guess 🙁

@bendmeoverbackwards but has dd1 actually done anything wrong? By encouraging dd3 to forgive, are you not agreeing dd1 has wronged dd3?

I suppose so. But dd1 isn't perfect (is anyone?) and there may have been some times when dd1 upset dd3 (not on purpose). I am trying to validate dd3's feelings.

I have two adult children at different points on the autistic spectrum. The oldest, my son, went to a special school. One of the best things I ever learned about helping my child with autism was “it’s the rule.” This makes things universal, that we all have to do, whether we like it or not. Autistic behaviour has to be modified, as does all children’s behaviour, but some autistic behaviour needs specific intervention. My son will never be able to do paid work, but works in a charity shop and in a supported enterprise. He lives on his own in a flat and has a very full social life. If we had not helped him - and it was very hard work - he would not be as independent and well liked as he is.

Why do dd3's feelings need validation? And why is at the expense of dd1?

Well everyone needs their feelings validated don’t they? I liken it to my marriage, sometimes I might upset dh unintentionally or vice versa. It doesn’t necessarily mean we’ve done anything ‘wrong’ to acknowledge and validate the other person’s feelings.

No, I don’t think all feelings are worthy of validation. You can acknowledge that someone feels a certain way, but those feelings can also be an overreaction/inappropriate response to an event.

There’s a huge difference between assisting an autistic child to adapt to a neurotypical world and forcing a child to mask 24/7. Autistic people are already statistically more likely to commit suicide — as a parent, I’m not sure I could forgive myself if contributed to that risk.

I was told by an amazing Psychiatrist at CAMHS that with ASD, you wont change the child but you can manage the “environment” to pre-empt and prevent the meltdowns.
This advice has worked wonders for me over the years.

Yes, but the environment of the person with ASD also includes other people, and so it's equally important to remember that while you can adapt the physical environment and do the very best you can to alleviate any other pressures you should be very wary, in my opinion, of attempting to adapt other people's behaviour , especially other siblings, to an extent where to help one you are essentially damaging the other.
This is an extremely difficult balance and one which many families have to juggle on a daily basis.
It's a discussion though that we shouldn't shy away from having.

In that case, does it mean you expect NT to learn ‘autistic social skills’ and to follow those rules each time they are with autistic people?

As long as it works both ways, that we’re equally wary of trying to modify the autistic person’s behaviour to an extent where you harm them in order to accommodate others.

@WaitingForMojo
I agree

No, I wouldn’t expect that from either party. You’re saying it as though it’s ridiculous, but it’s exactly what is being expected of autistic people. Or is that the point of your comment?

Learning autistic social skills in order to ‘cope’ with being around autistic people… why not, if that’s what’s expected of us?

Have you also validated dd1's feelings too though?

Because as the one who always had to back off, do more chores, give up what I wanted to do, I would have so appreciated an acknowledgement. The "well I haven't seen you do anything wrong, but you must have to make them react like that" is very hurtful. It feels like really they think you have done something. You may have apologised to her, but I'll bet you did it quietly, so not to upset dd3.

Nothing remotely on that scale, but I remember one holiday. We used to go to a self-catered place and the rule was we all did equal chores. Normally we went for teams, so team me and dad would do the picnic and Mum and brother would wash it up when we got back, then me and mum would do the cooking, and dad and brother do the washing up. Then the next day we'd swap round so over the holidays we did equal amounts. One year, he would have been about 14/15yo. Dbr refused to do anything. So I ended up doing all his as well as mine.
Not one word was said over the holiday about him not doing anything. At the end, my parents came to me and said thank you, and gave me £30 (a lot to me then as I didn't get pocket money) as long as I didn't tell him that they'd given me that money.
I didn't tell them this, but actually I was hurt. Because, you know, if he did something, then he'd be praised to the skies in front of me. It felt like my feelings didn't matter next to his.
I'd have rather they'd said a very basic "thank you for all your hard work this holiday" casually at one of the meals. It wouldn't have had to be a big thing, just that acknowledgement would have meant everything.
And a few months later, something was mentioned about dividing jobs and dbr said that he'd done more than half the work on the holiday, and both parents were falling over themselves to agree with him . Outside they again said to me that I'd done more...
Again it felt like his feelings mattered far more than mine.

It sounded like you validated dd3's feeling enough by expecting dd1 to tiptoe round her.

Please don't feel that I'm having a go. I think you were in a dreadful position, but please don't underestimate how much your dd1 is hurting. She may not say anything (I never said anything even if asked directly) but I'm sure she is scarred by the situation.
And, like my parents, you are too afraid of the consequences to stand up for her publicly.

If it's any help, when my brother went off to uni he got hit by the real world, and that people didn't endlessly make allowances. It wasn't easy for him, but he came out the other side a much better, and happier, person than he went in. He's now quite a decent member of society.

I think yes, learning about autistic communication would be extremely helpful, just as autistic people are expected to learn the ways of neurotypical peers. That’s the only way to resolve the double empathy problem really?

Autistic children (like nuerotypical children) aren't all the same. What works for one may not work for another. I've an autistic child with adhd and we've kept him busy. Running, volunteering, scouts etc. I worry about the future but try to focus on developing his skills, it just takes more time than his peers. He'll never withdraw to his bedroom. He won't be a high flyer but I'll be so pleased if he is able to keep a job and live a happy life.