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.

Not sure how I feel about this. I’m autistic but no one knew much about Asperger’s in the 80s and everyone just thought I was very shy. It was very very tough having no adjustments at school. I was so anxious most of the time that I would wet myself. It took me ages to realise that I have the right to expect any sort of accommodations. And even with an nhs diagnosis I’m not eligible for any financial help.

These threads are just awful for autistic people to read. All the sweeping statements and “autistic people are….” by people who aren’t autistic and really have little idea what they’re talking about. We’re sick of neurotypicals thinking that their way is best and that we should adapt to fit in.

I doubt we’d have the tech to be able to access MN without autistic people. Autistic people have been responsible for most important inventions and scientific breakthroughs. And who do you think cracked the Enigma code? I guess Alan Turing’s treatment says it all doesn’t it?

So perhaps you should have a bit more respect and stop treating us like a problem to be dealt with.

I'm autistic myself with a toddler who is awaiting assessment and while we aren't zero tolerance, we definitely have boundaries and rules. My friends autistic teenager rules the roost , is extremely aggressive and has hurt people when they don't get their own way. They also terrorise their younger siblings. All because their every want was pandered to . I don't want a situation like that with my toddler . My friends teen now has no friends as nobody will tolerate their abusive and controlling behaviour and nobody will go to her house either.

I think there is a mixture of giving way and being firm.

My dd has anxiety, diagnosed when young and been through CAHMS etc. She's got out of all sorts at school by going and saying "my anxiety is playing up". Exams, lessons she didn't like, things she didn't want to go to. She only had to say those magic words and she didn't have to face it. Even when I asked school to be a bit tougher, they didn't dare.
Now when she talks about it, I realise that actually I had very similar feelings of anxiety. But there was no get out then. So I developed strategies to deal with them, and, as far as I can tell, to no lasting effects.
She's away at uni and having to learn some strategies that I learnt 10 years younger in the comfort of my own home. And actually she's doing very well, but she now recognises that it wasn't always good she could just pull out.

When ds was diagnosed with ASD he said "now I'm allowed to be antisocial" to which I said "now you know that there are some things you have to work out how best to do them."

With both of them, there are times when you step back and let them-for example ds has sensory issues around sand and I will never make him do anything round sand that he doesn't lead. But there are also times when the best thing for them, and their mental health, to work out how they can do something as comfortably as they can.

And dd is realising that is something that would have been good for her to do many years ago, rather than just giving up each time.

AmethystSparkles - Unfortunately the minority do have to adapt to a certain extent to fit in with the majority. That isn't saying that allowances shouldn't be made, but certain behaviour whether a person is autistic or not shouldn't be tolerated.

I don’t think there can be a fair comparison because every person with autism is different so their reactions and tolerance levels will vary. I.e between your friends son and the previous posters child.

Completely agree. Am sure many people will disagree profoundly with this but it also puts me in mind of the fairly mindless "be kind" mantra. Sometimes the kindest path is not the path of least resistance and is very very difficult and painful in the short to medium term, but with a happier more adjusted outcome in the long run.

Totally agree with this

Same here

I agree too. I had a group of friends who made me feel like a monster for wanting my son to be able to cope in life rather than thinking the whole world should change for him and make allowances for him. Of course that would be lovely but it’s not at all realistic. He needs life skills. He is a very intelligent child who could go so far in life, and sure he is going to need a few reasonable adjustments to get there, but in the whole he is also going to have to know how to survive in a mainstream world.

I am a parent to an autistic child and NT child.
We certainly have boundaries and every family member is allowed their feelings and consideration. But there are times when my child just ‘can’t’ do something or it would be very detrimental to them. That is different from just wanting their own way. The challenging thing as a parent is knowing when something is a want and when it is a need. Realistically it is more art than science. I don’t always get it right.
Like raising any child, you learn as you go, try to instil your values and help them become who they are meant to be with all their gifts and quirks.
Parenting a child who is not typically developing is always a unique journey. My autistic child isn’t the same as your autistic child. I think the OP in the original thread sounded like she had reached total compassion fatigue and desperately needed a break. I felt for her. I also wouldn’t take it as a parenting example which should learn from. Just a mum at the end of her tether who probably needed access to respite but due to cuts, hasn’t had it.

I dont believe that all these young ones have SEN like they say they do.
I think mental health is taken as a joke when some out there have real issues.

This is exactly what the NAS earlybird early intervention program was about. I did it with my ds. We got a lot more support from sure start back then under a labour government. Both mine were officially diagnosed within 6 months.

I know two women. The first wouldn't make concessions, it worked. She then got back in the early days with the main charity, helping out at local clubs, giving talks both here and abroad.

The second works in a special needs school, also with the DofE taking youngsters on outward bound trips.

Both these people truly believe to infantalise special needs children is plain wrong. Bad behaviour can be just that. No-one died having a meltdown.

It's bloody hard, but bear in mind at 18 these young people are thrown back to the parents no more school. No more help, which is so hard on the parents.

If one child in a family is continuously excused it's hard on the siblings as well as the parents.

I remember that and l thought the approach was fair enough. You can’t have one person dictating and controlling how the whole house is for everyone rise living in it. Whether it’s everyone being silent after 9pm, only certain people are allowed in rooms when they are in them etc

WarningOfGails
Interesting. I was having this chat with a friend the other day (her daughter is waiting for a diagnosis) - difficulty in identifying when her daughter can’t help it and when it’s bad behaviour
Thats the crux of it all, isn’t it? It’s how to know when they’re being unreasonable/mean etc. so hard!

Ozgirl75
One of my son’s autistic friends will just say “this is boring, I want to leave” and at 13 I just think, isn’t it time to learn the polite way of saying that?

Chances are their parents have taught them not to or said it to them before in a different situation and it just came out on that/ those occasions. You can’t judge people who live in the trenches 24/7 on anything that has visitors/ an occasion because they’re a big thing, and generally a heightened sense of ‘this is how we all have to act’ (for everyone not just nd people!!)

Hoardasurass

Zero tolerance is not teaching someone how to behave.
Zero tolerance means no stimming ever, no adaptations or adjustments made ever.
Zero tolerance means not allowing someone to leave a situation that they find overwhelming.
Zero tolerance often (not always) involves punishment for stimming or meltdowns.
Zero tolerance is torture and child abuse.

Totally this- I hope most people mean just zero tolerance on a specific situation as I can’t imagine how to would be to eg tell someone to sit still when their body is telling them they need to get that pent up everything out

A balancing act is best as an overall approach but when it comes to certain behaviours that involve other people, sometimes zero tolerance is the ONLY option as anything less than that is abusive to the people on the receiving end. Just because you know there is no ill intent or malice behind an action & understand where it’s coming from, that doesn’t make it any less abusive if you’re receiving the brunt of it. You also need to look at the bigger picture as well, certain behaviours in isolation might be fine but when you put them altogether, it can add up to an abuse environment for others.

Edit: Just to be clear, I’m only referring to behaviours that directly involve other people here, not self-stimming, removing oneself from a certain environment etc.

I didn’t see the original post but would be very interested in the outcome.

I work in this area and quite honestly sometimes I feel things have gone too far in the direction of adjusting the world entirely for young people with Autism. I worry greatly for my students, that they are utterly unprepared for the realities of the world and as such are very at risk of falling through the cracks and becoming adults that will not engage with anything once secondary schools end and will likely live at home forever without any meaningful outlets.

I do feel there should be a happy medium, that some adjustments should be made to facilitate the needs of individuals with autism but also young people should be adequately prepared for life. However whenever the latter is mentioned increasingly the immediate response is ableism.

Autistic woman here too and I agree.

It’s always very hard to read any thread about autism on MN as there’s a good chunk of people who firmly believe that we shouldn’t be “pandered to” and just need “training”.

Someone up thread has just compared autism to trans demands and I’m speechless tbh.

Autism is a neurological condition where there are physical differences in the brain. Same for ADHD.

How you parent your autistic child is up to you but making reasonable adjustments within society is just like accommodating and supporting any other disability. We don’t put other people at risk and we aren’t asking for our own special laws. We aren’t trampling over other people’s rights. It’s not even remotely comparable to what’s been going on with the trans community!

Anyway.

Not all child behaviour is due to autism but autism will undoubtedly add an extra layer of complexity.

Like a couple of other PP, I find a low demand approach helps with my autistic DC. We have boundaries and expectations but they were created with an understanding of how my DC feel, and why certain things might be hard.

Autistic people can develop helpful coping strategies which are essential because as is frequently demonstrated on MN, there is very little compassion in the world for invisible disabilities. But you can’t “train out” autism. What happens is that an individual masks and represses things for years - until they eventually crash and burn.

No one is suggesting that an autistic child should be allowed to rule the roost but if the behaviour is driven by their autism, it’s rooted in anxiety about something, or being overwhelmed. The key is understanding where their issue lies.

Also, autistic teens are still teens - with all the usual teen issues. Please don’t mix that up with autism.

@AmethystSparkles l agree. This thread makes me want to smash my phone up.

My Dd is ASD. It’s so hard for her. ASD people are sidelined and treated as awkward all the time.

Hello, that was me!

I did wonder if I should post an update.

The biggest change has been that DD1 takes herself to her own bedroom to have a meltdown so she is no longer punching or kicking DD2, me or DH. She is finally using the strategies she has been taught over the years by us, teachers, outreach workers and counsellors.

I ended up having a rule that both DC go to their bedrooms when we return home from being out of the house. That has reduced my hyper-vigilance which has left me with more energy. DD2 (NT) is quite cross about this though.

DD1 seems much happier with far fewer meltdowns than before.

This is interesting as I have an autistic child but he copes relatively ok with boundaries (so I appreciate we have it easier than many).

however I’m in a group for other mums who also have autistic children and the group is VERY about zero demand as the only acceptable approach . It clearly causes huge friction in some of the household particularly between parents. Several marriages have split up and a big reason was disagreement over this approach.

The children seem to spend all day every day on their iPads as this is the only thing that doesn’t cause conflict. Some of these families never go out on trips, no family get togethers, no holidays. Because every single decision is geared towards avoiding anything the autistic child will struggle with or complain about. Any other person except the mum who suggests they could at least try gets shot down as being clueless about the needs of autistic children.

It makes me really uncomfortable as the home life for the adults and other children sounds unbearable. And I wonder what it is setting the autistic kids up for as adults where life simply won’t be so accomodating.

In terms of eating, DD1 decided she preferred eating alone at breakfast and lunch but wanted to eat as a family for dinner. That was easy to organise as we have a table in the kitchen as well as in the dining room.

I think what people don’t understand is that the volume of the world is often turned up with autism, or that there’s more difficulty working out what to do.

Imagine you’ve got a big day at work ahead - you’ve got to do a big presentation and there’s a lot to remember. Lots of things could go wrong. Everyone from head office is going to be there so your usual workplace will be noisy and crowded. You’re really anxious about getting through the day without fucking things up. Theres going to be situations arising that you don’t know the etiquette for and that’s making you feel extra anxious, on top of everything else.

You manage it, but by the time you get home you’re exhausted. It took everything you had to keep it together. Every drop of emotional energy has been wrung out of you. But now you have some work from home you have to do tonight, your DP wants to talk to you. The DC want you yo play with them. You just want to retreat in peace and quiet - but more demands are being placed on you.

Finally it’s bedtime and you’re so keyed up it’s hard to unwind. But hey, at least tomorrow will be easier, right?

Wrong. You know that really exhausting hard day you had? You have to do that every single day. Every day. And while you eventually manage to cope, it never stops being exhausting. It never stops being overwhelming. You never stop feeling anxiety.

Every. Day.

That’s what it can be like for autistic kids going to school, managing homework, and a family life. It’s so, so bloody hard for them.

It’s not ok for them to abuse other family members but understanding how they’re feeling and where it’s coming from will help drive solutions that work for everyone.

Just for a moment, please, really think about how autistic people experience the world around them. Please.

I have a 17 year old autistic son and a 14 year old autistic daughter.

I think that there are times where, in order to the child to survive (and I mean survive) we have to make allowances for their needs.

My eldest was diagnosed at 10, by this stage he was trying to kill himself (jumping out of moving cars/ bedroom windows) to avoid attending mainstream school which was a sensory overload for him. He was so poorly as a result of us trying to get him to comply that he had a period where he was extremely violent / breaking things if we even tried to get him to leave his bedroom. School/ education had to be knocked on the head because he couldn't do it. Family life was awful by trying to get him to comply. It took at LONG time for him to recover from this trauma and he could only do it because we backed off 100% to allow him to recover.

He now has recovered and surprisingly, with the aid of therapy and medication for anxiety disorder he is now successfully attending college and will go to university in September. He does reasonably well with tolerating things that he wasn't able to cope with when younger. He knows his own limits and tries to avoid the situations that he struggles.

My 14 year old daughter has the struggles with noise that have been mentioned upthread. It causes her pain to hear certain noises the same for smells. Some days are worse than others. There is no way I would force us to sit in pain with the rest of the family on the days that she is really struggling. That's miserable for everyone and down right painful for her. She tries her best.

So I think it's not the case of doing what the autistic person wants because it makes them 'happy' it's because it's the only way they can survive or not be in pain.

We had people say we were too soft on the eldest child when he came away from formal schooling and he would never amount to anything. The opposite has turned out to be true. He's on track for 3 A*s at A levels, trusts me completely as his primary care giver so we have an amazing relationship, much closer than that of his friends and their mums. The judgement we got at the time was off the scale. I've lost friends over it.

This is my friends concern. Through her clubs she continues to see ex pupils and their parents. Both are at an absolute loss. Young adults now home full time, no chance of a future because no-one ever said no to them. They can't get work because employers have to say no.