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.

Class sizes are so big now and schools so big. My friend a teacher does 16000 steps a day. That's pretty overwhelming for children.

Add to that no lockers, having to hump heavy bags all day which leads to physical issues. That's a lot to ask of a young child.

Two primary schools I went to as a child, one with a field to play in as well as a playground is now a housing estate. The other a town school next to a park, teachers would take us to in decent weather . Is now sheltered housing.

There's now an enormous school there.

My own children went to a primary with 65 children and a small secondary.

I go to the local RSPB often and see a group of mums with home schooled children. They have nature lessons, play in the grounds it just seems saner imo. We've lost our way somehow where our children are concerned.

I remember the consensus from that advert as being the NT sister got a totally shit deal having to put up with the ND sister’s demands!

I do think the state of education at the moment, and the move to “busier” classrooms and curricula, vs the old way of rows of desks and predictability does a lot of NT children a disservice.

I also think that there is a banding together of ND people around an identity, which does tend to frame NT people as the enemy. I can’t say it’s unreasonable if one has struggled interacting with an NT world, but I don’t think it’s particularly helpful.

For me, it’s upsetting to see just how little is understood about autism and neurodivergence generally and to see how some people are thinking about my dc. It doesn’t bother me so much for me, but for the dc it does, because I know how that judgement hurts them.

My dc are terrified of putting a foot wrong, because they feel this kind of judgement. they’re anything but deliberately naughty or badly behaved.

I agree on some level but how on earth can society meet people half way when needs are differing. If you’ve got one person who experiences sensory overwhelm and cannot tolerate noise and one person who stims loudly - you are asking the impossible.
It has to be on an individual basis. It is unreasonable to go to a concert and ask them to the the music down. It is not unreasonable to expect a different section, be near an exit, be near a room where someone can have quiet, have access to ear defenders etc.
It is unreasonable to expect 13 year old Sarah be quiet in the family home because it upsets Emma who is 12 and has autism and difficulty with sensory overblown. It is not unreasonable to expect Sarah to listen to music on headphones and encourage Emma to wear ear defenders so the family can all sit and watch a movie together.

Interesting how different takes can be taken from the same thread.

I just remember feeling very sad that posters were saying that my daughters should just accept being hit and verbally abused by their brother, because he has it so much more difficult.

As the child of an ASD parent who was the golden child when they themselves grew up and whose controlling behaviours weren’t managed, I can honestly say it’s been very hard for me, my sibling and my poor poor DM who is no longer with us. As children we grew up afraid of him. Everything was done to his standards. For example my DM was timed on her trips to the supermarket in order to prevent her taking longer than necessary by looking in a couple of charity shops on the way back. She had a permitted amount of time and woe betide her if she went over that. He went through her shopping lists to check she hadn’t bought anything with the housekeeping money which he deemed not a household item. If she had, he would recharge her for the item. She wasn’t allowed a waste paper bin in our bathroom as he said she didn’t empty it regularly enough. When I say “not allowed” I absolutely mean NOT ALLOWED!

In short he controlled everything and refusal to comply with his demands was met with anger and shouting. Shouting was daily and normal and frightening and has affected me in more ways than I can say. We were on high alert at all times. My DM eventually walked out on us all, leaving her beloved children as she could quite literally take no more. She never came back. Though I did see her regularly, it wasn’t the same. She was our safe parent. Our emotional anchor. And then one day she left. And we were left with him.

So although I don’t think the anecdotes about “I know a person who killed himself as he had to mask so much” are helpful because generally I don’t think a single anecdote is helpful in trying to make sense of a highly complex multifaceted debate. And I realise I have also given an anecdote so I am being somewhat hypocritical here!!! But for all those people on the side of allowing ASD children to have all their needs met and not have to be made to conform to what is considered acceptable behaviour, I just wanted to present a portrait of what can happen when that is allowed to play out. What it means in practice for those people who have to live with that person in the future. Because they won’t always be children. They will adults one day. An adult who, like my father, doesn’t understand that their needs do not trump everyone else’s. An adult who uses aggression as a normal response when they feel challenged. And how those people who say it would be considered by them to be abuse to not allow that ASD child to have their needs met, may want to consider that in some (not all, by any means) cases that individual who will
grow into an adult, will unwittingly inflict their controlling behaviours on those around them, including children.. and the experience of those people is to feel emotionally abused and frightened. And in my case to spend my teenage years without a mother around. My DM never could get over the guilt of leaving her children and she drank herself into an early grave. I miss her all the time.

So yes, this is highly anecdotal. I do understand that. But perhaps a pause for thought about what can happen on the other side. And what it means for the other people in this scenario. It has not been pleasant. And he continues to alienate people with his behaviour but he is now too old to be taught to behave differently.

But the examples you give - all of which I agree with - are examples of meeting halfway!

What some people (not you) seem to be suggesting is that Emma should just have to learn to tolerate Sarah listening to music without headphones.

Yes, I can see this.

I was undiagnosed as a child and wasn’t taught any coping strategies. I was also labelled naughty, unmanageable, manipulative, spoilt, weird etc.

Not having accommodations made and a zero tolerance approach didn’t make me more able to cope, it made me less able to cope. I may have gone to mainstream school, appeared to have friends at some points, gone away to uni, and learnt in many ways to appear neurotypical. But it led to extremely poor mental health and a lot of difficulties. It also led to a very poor relationship with my family, as I generally just felt they disliked who I was and experienced much of their behaviour as abusive.

Diagnosis, and learning to reduce sensory overload, has been transformative for me. And my family ‘get it’ much more than they did, even if they do sometimes have a deficit based view of autism and don’t altogether get ADHD either.

Learning not to try to fit in, not to be afraid of asking for accommodations, making accommodations for myself, has made my mental health and my life absolutely fine, as well as improving my relationships with others.

The world does bend. It has to. As adults we are the curators of our lives and we have control of which environments we put ourselves into. Children have none of that power and I feel strongly that teaching our autistic dc to advocate for themselves is the most important thing we can do for them. That is a hill I will die on.

I shouldn't be surprised that you doubled down instead of acknowledging that you said something stupid and hypocritical, but somehow I'm still disappointed.

You berate neurolotypical people for speaking over ND people, saying they shouldn't do it even if they know ND people. Yet here you are claiming wheelchair users have a breeze compared to autists based on your experience knowing a few wheelchair users. Do you see the issue?

No one here is advocating for all autistic traits to be ‘trained’ out of someone or saying that someone needs to mask continuously. This whole discussion is about what happens when certain behaviours become ABUSIVE TO OTHERS which some of you seem to be overlooking (including the fact that those “others” may only be children themselves so don’t fully understand the situation). If you’ve not lived in such a situation yourself, you should really think twice before calling someone disgusting or ableist for simply daring to open up a discussion. It’s very telling that in some posts, it’s all about the person with autism & not a single mention or consideration for anyone else.

Speaking in general terms, looking at ways to help someone change their behaviour does not mean asking them to mask, it can be about helping someone find alternative strategies to still release their feelings but just in a less destructive way that is not abusive to others. Of course it’s not going to be an easy path but that doesn’t mean it’s not worth at least exploring to see if it’s suitable.

My brother has autism and having ‘a home base that allowed him to be his true self’ whilst I’m sure good for him, meant the rest of us - who were also children ourselves - living in a house where he would regularly knock seven bells out of us. It was easier to cope with when he was younger but as he got older & stronger, ‘being himself’ meant drawn blood, knocked out teeth, concussions & broken bones for the rest of us. That’s not even touching on the damage done to our home & belongings.

Trying to help my brother change how he let his feelings out may well have caused him “major mental health issues” as some of you are saying, but being on the receiving end of his violent meltdowns caused the rest of us major mental health issues too but that doesn’t seem to matter to some of you. Another thing which some posters are failing to take into account is that yes, home should be a “base of safety” for people with autism but family members who are living with a person who’s autism results in violence or controlling behaviours have “no base of safety” themselves because of what they are subjected too.

My whole family received therapy and were in various support groups and learnt that other parents / carers / siblings in situations like we were in, often ended up feeling suicidal themselves due to living in abusive home environments. I’ll never forget how I would regularly have to wet myself (and the humiliation I felt) because he had to control when others used the bathroom & the fear I felt of what he would do to me if I dared risk it; I distinctly remember being 10 years old, on my period & trying to figure out where in the house my parents were & how much damage he could do to me in the time it would take them to get to me if I chanced it, no one should have to live like that. In my family, several of us are still battling with our mental health to this day, for example ALL my sisters & I, have gone from one abusive relationship to another as we were unintentionally conditioned into accepting & tolerated certain behaviours. Several of us also suffer with eating disorders too because at one point in our childhood, it felt like food was the only thing we had any control over.

All that is to say I don’t blame my DB & I love him to death & I know it wasn’t his fault but that doesn’t lessen the trauma the rest of went through.

Like I said in an earlier post, knowing that there is no ill intent or malice behind someone’s actions & understanding where it’s coming from / knowing they can’t control it, doesn’t make the actual actions any less abusive to the person on the receiving end; being punched in the face with such force that your nose breaks, hurts just as much whether the person actually means to hurt you or not.

While the damage violence does is easier to understand, people should also look up coercive control to get an idea of the damage controlling behaviour can do to a person too. While it goes without saying, that the intentions & personal culpability of a person with autism is completely different to others who exert control, the actual actions being carried out and repercussions / damage for the person on the receiving end is the same.

But for all those people on the side of allowing ASD children to have all their needs met and not have to be made to conform to what is considered acceptable behaviour, I just wanted to present a portrait of what can happen when that is allowed to play out

I am sorry that your father was controlling and that your mother couldn’t adequately protect you from him. But that was down to him. Not all people with ASD want or need to control people to that extent - I don’t, my own father didn’t - and not all controlling people are controlling due to ASD.

And shouldn’t all children have their needs met?

What some people (not you) seem to be suggesting is that Emma should just have to learn to tolerate Sarah listening to music without headphones.

I think what people are trying to say is while you can implement certain rules and adjustments in your own home, you can't dictate what other people do outside of the home - eg. on public transport, or in the supermarket.

Parents may be able to ask Sarah may use headphones at home, but they can't ask random people on public transport to keep the noise down, or to use headphones. So if Emma doesn't have her noise cancelling headphones for some reason, and is stuck on a bus, she also needs to learn some additional techniques that could help her until she can safely get off the bus and go home.

they can't ask random people on public transport to keep the noise down, or to use headphones.

There have been multiple threads on that topic on here tbf!

But I do see where you are coming from, and I don’t disagree with you on that.

I don’t think anyone is saying this is ok. I’m certainly not.

In this scenario, it doesn’t sound like anyone’s needs were met.

Mine would just get off the bus.

The world does bend. It has to. As adults we are the curators of our lives and we have control of which environments we put ourselves into. Children have none of that power and I feel strongly that teaching our autistic dc to advocate for themselves is the most important thing we can do for them. That is a hill I will die on.

Absolutely, but I think a lot of learning to advocate for yourself comes from learning what works for you in childhood, and knowing that, actually, you can cope with some scenarios - even if it's uncomfortable or overwhelming or scary.

Because then you can go to someone and say "look, I'm already doing X and Y and I'm still finding this really difficult. Could you possibly do Z as well".

I would also say that my experience of "fitting in" wasn't just about socialising, it was about learning to cope with the sensory issues around food, cleaning my teeth and washing my hair - all things that people do have to learn to cope with at some point.

But as I said in my post, it's not always possible to get off the bus - at least, not immediately. So techniques to cope until you can are essential.

That posters father didnt have his needs met as a child though did he, his needs, like any childs needs, were to have parents who enabled and promoted his development so rhat he developed the skills to live safely in the world as an adult. He was failed in that respect, no one taught or trained or modelled or guided him to develop different skills and emotional regulation that would enable him to be safe around others.

I would also get off the bus, I also wouldn’t get on a bus without sunglasses and earplugs.

Also, the more my sensory needs were met before I got on the bus, the better I’d be able to tolerate it. Being made to tolerate the noise at home would make me much less able to cope in this situation, not more able to cope.

But there may be situations where you have no choice - the car breaks down, or something happens that means the only way you can get home is to catch the bus.

There's no guarantee that you can always avoid situations that make you uncomfortable, nor can you necessarily ensure you can always meet your sensory needs beforehand.

What happens, for example, if your car breaks down on the motorway and the only way home is a breakdown lorry plus a bus or train journey of several hours?You can't just stay on the side of the motorway, you have to get to safety so you need techniques to cope with that.

This sounds really positive if he isn’t unhappier (god, dare I say even if he were?!) I can understand the parents doing this, one child of three making everyone’s life so much harder sounds so difficult.

To add, of course if I was overwhelmed and had the option to get off the bus and walk, or get off and wait for the next one, I would do that - but my point is that it's not always possible and there's no way to live your life that's guaranteed to be completely free of situations that make you uncomfortable.

I can't see why learning techniques to help you cope in those scenarios could ever be seen as a bad thing.

Oh I misunderstood. We are clearly on the same page. 🙂🙂

@QueenOfTheLabyrinth I couldn't agree more. I grew up in a similar household where the needs of my autistic sister trumped all else (I strongly suspect both myself and my other sister are ND but never sought a diagnosis). We are now all in our 20s/30s and as a result I, my other sister and Dad are non contact with our autistic sister. She is physically and emotionally violent and abusive with our Mum still, and I've now begged Mum to stop seeing her as I'm worried for her safety. Until 2 months ago they lived together and my sister would regularly call the police on Mum for every perceived slight, to the extent they wanted to caution her for wasting their time. Its horrific and so hard for everyone, as these situations are.

But from DS POV in your scenario the car breaking down would send him into complete overwhelm (I keep his wheelchair in the car at all times incase we do break down so I can safely restrain him) so no matter what getting on public transport after that would be a no go, we would have to find another way back.

ones person “can struggle through” is another persons “not a chance” and no amount of preparation can get them through it