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.

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.

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.

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

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.

Fantastic post @Silkymum and I needed to hear that. I’m on some FB groups for parents of autistic children, some people seem to think their ASD child’s needs come above everything else.

Two years ago, my youngest dd who is diagnosed ASD developed an intense dislike/fear of her oldest sister. It went on for six fucking months. Because dd used phrases like ‘I don’t feel safe [around dd1]’, I was advised to listen to my ‘younger, more vulnerable child’ by people in these groups. Dd1 hadn’t done anything wrong but by siding with dd3, it caused a lot of damage to the relationship between me and dd1. I made a huge mistake and have apologised profusely to dd1.

Because dd3’s autism diagnosis was a huge curveball we let the boundaries slip over the years. She us now 17 and I just hope I haven’t left it too late to turn things around.

@justasking111 no one died having a meltdown? You sure? Because my Son has run down a dual carriageway when in meltdown. He's broken my nose, punched through numerous windows. All before the age of 7.

We are all miserable. There is no help available. But to come on this thread and see people talking about autistic kids as if they are animals has upset me more than any of his behaviours ever has.

Are you this mean to everyone online? That poster was expressing her view of her experience of being a wheelchair user.

People who are ND on this thread have spoken up about how they don’t want parents/non ND people to speak over them. This is absolutely correct. Fair enough, maybe I’m a carer of a child with ND but I don’t assume to know what it’s like to be ND. Therefore, a non wheelchair user does not get to speak up over other people either! Being a carer doesn’t mean you get to make assumptions.

I think that someone who has been a carer for 40 years since their childhood, deserves more respect from you. Are you this mean to your carers?

“Not quite sure where the hypocrisy is?”

The hypocrisy was that the PP said nobody should assume what a person’s life is like unless they have actually experienced it and then went on to make a comment that showed they are not a wheelchair user.

Everyone is not happy to make adjustments for wheelchair users, in my local town alone there are so few dropped curbs I end up having to wheel along the road if I want to go to any of the few shops that have any access at all.

I recently tried to find a solicitor with wheelchair access from a list of specialists and the only one who would even see me said they could put a couple of planks up to their back door. I could go on.

I know from personal experience how difficult it is to function as an autistic person in modern society, but minimising others’ difficulties isn’t the way to persuade people to make the accommodations that would make it easier.

Wheelchair users are also often disbelieved

Not quite sure where the hypocrisy is?

Differing treatment between visible and invisible disabilities is real and widely recognised as a problem.

That’s not diminishing the very real problems people in a wheelchair face.

And I don’t know if you read my follow-up replies but I was very clear that I can’t speak for wheelchair users, nor would I want to.

Wheelchair users still face enormous difficulties every day. Those with invisible disabilities face a different kind of discrimination and are often disbelieved.

Both things can be simultaneously true, hence why there are studies on the subject of the different barriers that those with invisible disabilities face. I can’t see the hypocrisy in pointing it out.

Thank you @LordSnot, you saved me from having to say this.
I was so struck by the hypocrisy in that post I actually laughed out loud when I read it.

I've reported you for your unpleasantness @LordSnot

Likewise.

I was going to post something similar about the difficulties with balancing conflicting needs.

And I think these posts get heated because there are different groups of people who all bear their own scars.

You have autistic people whose needs are largely dismissed, they’re spoken over, and regularly demonised. There’s a long-running series of threads on MN dedicated to how awful it is to live with an autistic person. Honestly, it’s really hard to see the thread regularly pop up. There’s no other group of people who have to endure others just piling in and slating them, with sweeping stereotypes and unfair statements made about the nature of neurodivergence. A whole series of threads dedicated to what shitty people we are.

So there’s that.

But then you have exhausted parents with ND children who are getting no support and watching their child spiral out of control. They don’t know what to do for the best, and often receive poor advice from the school. Parents trying hard are often demonised too as shit parents when that’s not the case.

And there’s a third group. People who grew up with an ND sibling which affected them deeply. Individuals who are traumatised from what they had to endure because their sibling wasn’t getting the right support. Understandably, their focus is on the impact on the wider family. Sometimes there’s real bitterness that their needs as a child were trampled over because all the focus was on the ND child.

Lots of emotions, lots of baggage all round from all three groups. Ignoring the posters who are just being dismissive arses, there are really good reasons why there’s such conflicting views.

I think there’s probably more middle ground than it seems. But everyone is so sensitive because of past experiences, it makes it really hard to overcome.

It’s really hard to drop your defences and try to view the other side when you feel attacked or just misunderstood. And I think thats often the case with anyone who has skin in this game, regardless of which group you fall into.

One can see how, if you try to deal with a reaction to one particular issue (such as loud noises/others eating) by control over it to the degre of not eating with others ever, or by making everyone else keep quiet, and that helps a person feel in control, it follows that being out of control feels even more scary and “not copeable” as well.

No I am certainly not saying that all people with ASD want to control others. I am saying that the place where this thread originated was how another poster had decided zero tolerance to the controlling behaviours her ASD DD had been exhibiting was going to be her new approach, having tried in every way to meet the need of DD to control all her surroundings and how it had become intolerable.

It opened up a debate about lack of understanding and needs being met. Some fairly defensive posts about how people with ASD should have their needs met and to expect them to change their behaviours to be more acceptable to others amounted to being ableist and disgusting. Which I think was met with some challenge about the needs of others and what to do when control starts to affect other people in the family.

One person saying zero tolerance amounted to disgusting abuse - overlooking the fact this thread is about trying to balance the needs of those who need to control with the rights of others not to be controlled and how that in itself is abuse.

I know not all ASD people need to control. But this thread is quite an emotional debate about control. What happens when need is about control in order to feel safe and the horrendously damaging impact of that.

At least that’s how I see it. A debate about zero tolerance approach to controlling behaviours born of desperation. Other people feeling this was ableist and could lead to masking and poor mental health resulting in suicide. People missing each others’ points and getting quite heated. And I wanted to reiterate that when the need is about control (because that’s how this thread started) it is absolutely not fair on those around them and the lasting damage this can have.

There was a mum on here ages ago now. Her son had in the past broken her arm, smashed her eye socket, various other injuries I can't recall. Her husband had walked out a few years before her other child was around 11 years of old.

That day he had smashed up the house. Ripping off doors, throwing televisions, all this she was quite sanguine about her fear was that he would attack her younger child.

She asked what to do. Everyone said call the police now. Get him arrested. She really didn't want to, I can't imagine the hell that little family had endured.

So coping strategies are important.

I’m not saying anyone thinks it’s okay, I’m saying some people are failing to THINK AT ALL about anyone other than the person with autism & not acknowledging the other side of the coin. I spelt out my upbringing as some people seem to be missing the point of the thread, this wasn’t started as a general discussion about autism but about what happens when certain behaviours become ABUSIVE to others which seems to have become lost; this isn’t about general expectations to conform to society or reasonable adjustments etc.

You’re right that in my situation no one’s needs were met so the hard question is what can be done about it? It seems even daring to explore solutions is bringing up accusations of ableism etc. If we can’t talk about it without being shouted down, then the only alternative seems to be to put up & shut up.

I'm not sure why the word "training" has got such a huge reaction. I've never seen any objection to "potty training" and I do "training" at work.
It's not being "trained" out of showing ASD, but more being "trained" to react in such a way that will make life easier both for the person with ASD and the people around them.
In the same way we "train" a child to say 'thank you' because it is nicer for others and ultimately also nicer for them because people will react to them better.

I'm another that grew up with siblings with (undiagnosed) ASD, and one of them we had to tiptoe round so much, and not doing so was seen as behaving badly. I very rarely didn't make accommodations, I often volunteered to do them, but on the odd times I didn't, I was treated as though I was the problem for not conceding.

Dm went through about 10-15 years where she'd say "let him get away with it - he's going through a difficult time."
And that was meant to explain everything from a trip out had been planned and he didn't want me to go, playing his music very loudly (but complaining if mine was on, even if it was inaudible - I remember once him complaining about the volume when I was rewinding a tape. He'd passed as I'd clicked a button. Even when I explained that, dm said I needed to turn the volume down), not going somewhere I wanted to go, being expected to go somewhere he did want to go, having the smaller serving of a treat food (I remember one time him (age about 16yo) having a strop because I 'wasn't dividing the food fairly'. I was literally going round putting one on each plate in turn. His response when I pointed this out was 'you're giving me the same as everyone else'. Dm gave him hers.). Expected to share my things (which often came back damaged) but never even think of borrowing something of his, even if it wasn't in use any more etc.

But the most frustrating was timing. Dm is one of those last minute people. We'd typically be running in as the doors closed to something we had tickets for. One of the reasons why I'll now be 45 minutes early.
My sibling used to say they didn't want to go, until we were leaving the house. Then as we went out, would announce he wanted to go. Then he'd need a shower, change of clothes, get something to eat... The number of things we arrived at the end or even after it had finished. We're talking when he was mid teens and older, so easily able to be left.
He now freely admits he did it to control the family, and says that if dm had started saying 'no' to him and leaving he'd have stopped doing it. He wishes that she had put that boundary in place too.

That makes sense :) I definitely don't think people should be changing to try and fit in, I tried that in my twenties and it led to a mental breakdown - would definitely not recommend 😂

I'm not really sure why the idea of teaching autistic children/adults how to cope is being knocked back like it's a bad thing.

Teaching people to cope, to the extent they can, is not a bad thing -of course it isn’t.

Some people (not you) do seem to be expecting autistic people to mask / hide their autism, though - it’s not easy to look back at the thread on my device, but quite a few people earlier were saying that people needed to learn to fit in. That’s what I’m objecting to. Not coping strategies that make lives easier.