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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.

355 replies

Shestolemyboyfriend · 21/04/2024 07:30

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.

OP posts:
WaitingForMojo · 21/04/2024 16:26

greyandbluewool · 21/04/2024 13:52

@WaitingForMojo
Firstly I haven't said in what way you should attempt to modify behaviour.

I understand the idea that in a period of intense stress trying to adapt behaviour may result in the opposite.
However, in the day to day I disagree that exposing children to children with ASD to situations which are not 100% to their liking or that they cannot control entirely is abusive.
I don't agree that expecting children with ASD to learn to also accomodate others is harmful to them.

I'm also unsure what you mean by saying that by encouraging them to do so you are "asking them to behave in a way contrary to their neurology".
Is trying to help someone with Dyslexia learn to read going against their neurology too? What about organisational techniques for someone with ADHD to stay on top of day to day life? Would these be abusive in your opinion?

I don’t think I’ve used the word abusive here, forgive me if I’m wrong.

No, helping a dyslexic person learn to read isn’t abusive. ‘Zero tolerance’ of alternative ways of communicating would be. Insisting that they must read without adjustments they need such as coloured filters for Irlens, chunking information, dyslexia friendly fonts, etc and insisting that their refusal to read is ‘bad behaviour’ would be.

Insisting that someone with ADHD organise themselves and providing no accommodations, no visual prompts, no medication, no neuro-affirming coaching would be abusive, yes. If the person with adhd is overwhelmed, supporting them to organise themselves would be helpful, as long as it’s done in a way that supports their neurology, not works against it.

You also can’t do these things in a state of high arousal and sensory overload. A period of backing off on the reading / organising etc is likely to be necessary first if that person is already overloaded.

Of course, the people with dyslexia and ADHD might also experience sensory overload and meltdown / shutdown, those things aren’t just the preserve of autistic people.

Createausername1970 · 21/04/2024 16:24

I don't recall the thread. My DS wasn't diagnosed till he was 20, but I kind of assumed he was from his behaviours.

I think I had an easier time of it because he was an only child so I was able to parent in a way that suited him and didn't upset other siblings. He probably was indulged a bit more than he needed to have been, but my route through life was achieving what needed to be achieved in the least disruptive manner.

I was clear about what the needs and expectations were on any given day, but I didn't mind too much how we achieved them. I was quite happy to do things his way, as long as we achieved the overall aim. Whether that was a supermarket shop or a transatlantic flight!

I often said I do not know how I would have coped with a second child and meeting their needs as well. Must be very hard.

fieldsofbutterflies · 21/04/2024 16:24

PenguinLord · 21/04/2024 16:03

Lots of autistic people also grow hateful and depressed when denied the one thing that they enjoyed. Also, 'trainig' an autistic person, ffs.

I don't think anyone is talking about "denying autistic people the one thing they enjoyed" but they do need to learn that they can't always do what helps them, regardless of the circumstances.

The word training might seem off, but I don't see it as any different to teaching neuro-typical children about table manners, or how to behave in restaurants etc.

Yes, you have to approach them differently and maybe use different techniques, but the general idea is the same. Children (autistic or otherwise) need to be taught how to behave in certain scenarios, and in autistic children, that includes dealing with sensory overwhelm or overload.

I say all that as an autistic adult who was taught how to handle scenarios that overwhelmed me as a child. It means that, as an adult, I can handle lots of scenarios that would have terrified me as a child or even a teenager, and it's made my life a lot easier. I'm also now confident enough to say when I'm overwhelmed and need space, whereas as a child I wouldn't be able to say that and would meltdown or shutdown as a result. I rarely need to do that these days.

justasking111 · 21/04/2024 16:18

WaitingForMojo · 21/04/2024 16:16

Do you know what a meltdown is? It’s a neurological event, not bad behaviour.

Yes I do thank you and the difference between the two.

WaitingForMojo · 21/04/2024 16:16

justasking111 · 21/04/2024 12:41

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.

Do you know what a meltdown is? It’s a neurological event, not bad behaviour.

notameangirlhun · 21/04/2024 16:15

My DD is in a mainstream school and although she performs at a high level academically, there are lots of aspects of daily life that she struggles with, especially as a teenage girl interacting with lots of other teenage girls.

I wouldn’t say I go as far as zero tolerance as I personally feel that would be massively damaging to my teen DD, however I do ‘train’ her how to cope with and navigate situations as one day she will have to live without me and I am adamant that her younger siblings do not become her carers.

I draw boundaries like PP have done. There’s a big-ish age gap between DD and her youngest sibling. She’d be very distressed by his crying or loud play as a baby/toddler and would want me to tell him to stop.

I didn’t believe it was right (or possible!) to discourage a toddler from playing so instead I worked with DD to help her manage. We did this by investing in noise cancelling headphones, reminding DD to wear them and keeping noisy toddler activities on the opposite floor to where DD was where possible.

soupfiend · 21/04/2024 16:13

PenguinLord · 21/04/2024 16:03

Lots of autistic people also grow hateful and depressed when denied the one thing that they enjoyed. Also, 'trainig' an autistic person, ffs.

What 'one thing that they enjoyed' are you talking about someone being denied?

Because this thread is talking about people being controlling of others, or harmful to others, or aggressive/rude/violent/breaking things/emotionally abusing and manipulating the household

No one is talking about being able to move about, or stim or do hobbies or have time out.

The abuse that is created to others in the household from controlling and manipulative behaviours is never or rarely acknowledged here. Unless its from a husband though. Then there is a recognition that no matter where the behaviour is coming from (MH, ADHD, ASD) it is still abusive.

That also stands for teenagers.

SecretSoul · 21/04/2024 16:10

I think part of the problem, seen regularly on MN, is that we have people who aren’t ND themselves deciding what’s best for people who are ND.

Just because your child is ND, or you teach/work with ND people does not mean you get to speak over what ND people are telling you.

So often ND voices are spoken over by NT people who have some experience of living/working with ND people. That is NOT the same thing. Until you experience things for yourself, you have no idea what it’s like. None. And it shows in the comments made here.

Neither myself or any of the other ND voices here are suggesting that ND children should always get their own way. The full needs of the family need to be balanced and considered, and there are often conflicting needs which makes it hard for everyone.

I remember the last post and I’m so pleased that the OP is finding a way that works for her family. It’s bloody tough for parents, but don’t forget it’s tough for the kids too. They’re not “being difficult” for a laugh.

The problem is that NT people often view success as training an ND child to mask well and pass. Suppress their own needs. Thats what’s been repeated in many posts on this thread, often with misplaced pride. In the majority of cases this approach causes psychological damage which typically manifests as a burn out in the end. You might not see it yet. It might take years to reach this point but it’s so frequently the case for autistic adults who weren’t helped to develop healthy coping mechanisms. And by that I’m talking about mechanisms which are designed to support the needs of the autistic person rather than being designed to make the people around them happier.

Just for emphasis, I am at no point saying violence is acceptable. I am referring to all of the other behaviours being described. An autistic person never has cart blanche to hurt anyone else.

Of course us autistic folk still have to function in a world which is desperately lacking in compassion. Someone in a wheelchair? No problem, legit disability and everyone is happy to make reasonable adjustments. Autistic people though? Nah. They have to fit in with the rest of the world and fuck how much harm it does. Asking for adjustments is seen as unreasonable because you can just train autistic people to look more socially acceptable. So much better, right?!

Gah.

Sirzy · 21/04/2024 16:06

It is hard as a parent to try to get that balance right, and some days you do let things go for an easy life.

but as with any young person to role of the parents is to help that person grow to be the best version of themselves they can be. That will look different for everyone but we still need to try to equip them with the skills as best as they can. Nobody should be forced to hide who they are, or be unable to relax in their own home but at the same time they need to understand that other people have needs and feelings too.

PenguinLord · 21/04/2024 16:03

clearmoon · 21/04/2024 07:34

It can work, there is nothing about autism that prevents people learning acceptable behaviour on the home, but the earning journey can be a bit brutal for everyone involved. Lots of autistic people grow up grateful for the training, when it has worked. Depends largely on cognitive ability

Lots of autistic people also grow hateful and depressed when denied the one thing that they enjoyed. Also, 'trainig' an autistic person, ffs.

Noidea2024 · 21/04/2024 15:53

As many other have said, it really is a balancing act. I grew up without anyone recognising my autism. My parents had no tolerance for my 'differences' and nor did school. I ended up with serious mental health difficulties and spent eight years in-and-out of eating disorder units. Many adults who grew up without their needs being recognised had a similar experience.

That said, I do not feel we should panda to a child's every need. We have an autistic child and it really is a balance. We are actually considering home Ed for secondary, but it's not around d protecting him so much as enabling g him. He already finds schools a real challenge and needs hours to recover. We suspect he was be more overwhelmed at secondary and have no other life. He copes much better in the holidays and is a different child. We have thought long and hard about whether this is detrimental to him, but no matter how hard I try, I cannot cope with full-time work, and I suspect he won't. No amount of 'training' or exposure has changed that for me. Sometimes with autism, it's about finding out one's limits and working to them.

Maray1967 · 21/04/2024 15:50

Silkymum · 21/04/2024 08:59

I don't think sudden sweeping changes like zero tolerance approaches ever work well with autistic kids. But I do think that they need boundaries, and that there is a danger with the current trend for lowering demands that what happens is that child's window of tolerance shrinks and shrinks until they are not only school refusing but refusing all the demands of social life, and making family life intolerable for the other members of that family. So finding a balance between the needs and wants of everyone in the household, and slowly and steadily working on boundaries and social behaviours to help everyone to live together and in the social world, is really important. Really hard to find that balance, but letting an autistic child believe they are in control of everyone around them as just as scary for them as if is for a NT child. They need to know that their care givers can keep them safe and that the world is not going to fall apart if they have a meltdown. Permissive parenting approaches do not teach the child this, instead it teaches them that they are out of control and nobody can protect them because when they push the boundary they find a curtain where a wall should be.

As an HE lecturer , I wish parents would bear this in mind. Students whose parents have encouraged them to try to do things and face their fears do much better and seem much happier and calmer. Those who seem permanently miserable in my experience are the ones who have no coping strategies and complete refuse to consider trying to develop any. We are implementing very significant adjustments for some students now - but I cannot see how future employers will be able to manage their expectations.

On the home front, I would not allow a child to dictate home leisure activities and how & when everyone eats. I’d be happy to try to put compromises in place but would not let one child basically control family life.

justasking111 · 21/04/2024 15:44

My friend wouldn't accept that her child was ND he was tall and strong, would be physically aggressive at nursery, then primary school. Then secondary school. Her solution keep changing schools. He was no problem at home she said, well maybe was but because he was allowed to do anything he wanted or bribed with sweets he was less stressed. When he smashed things up at home it was because of nasty people at school who had upset him.

He was expelled finally, from secondary school went to college, discovered drugs, became a dealer was jailed for GBH.

The prison saved him because there were rules his sister told us. Mum and dad just gave into every demand. His sister had an unhappy childhood, they're not close but she's glad he no longer rules the roost for her mother's sake.

He came out of prison with a trade, he lives alone but is happier. He works, has a social life, a girlfriend.

Blueocean18 · 21/04/2024 15:42

Surely all this depends on the individual & the degree of autism involved.

Youcannotbeseriousreally · 21/04/2024 15:41

stargirl1701 · 21/04/2024 13:07

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 sounds like a really positive step forward, I’m please you’ve made improvements.

stargirl1701 · 21/04/2024 15:40

I think I realised something from my original thread that is being repeated here. Some posters really struggle to separate their own experience from my daughter's. Some posters see parenting in very black and white terms.

Balancing the needs of all family members is nuanced. My child's experience is not your childhood repeated.

ChicViper · 21/04/2024 15:38

There is too much I would like to say here. I would caution people to understand that profound autism with a co morbidity like learning difficulties is a different beast altogether. The process to change behaviours can be years in the making. What you might see are concessions/not being strict enough but you have no idea of the progress made to get to that point even if the behaviours are still outwardly negative. The improvements can be small and decidedly incremental.

Honestly, Id find it very hard to take a critique from someone who does not live this life making parenting judgements on their outside perspective. I do agree that teaching appropriate behaviour is incredibly important as are reasonable adjustments. It's different for every child and takes more time than some of you could ever know or understand. Someone could look at me and think I've not been strict enough when actually we've worked so hard to even get where we are. We are on a different timeline altogether.

BustyLaRoux · 21/04/2024 15:33

Hoardasurass · 21/04/2024 09:28

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.

Having reasonable adjustments and allowing someone to stim in a safe space (for them and others) whilst allowing them to remove themselves from a situation that is overwhelming, should be the go to, not pandering nor zero tolerance

Doesn’t it depend what the other person says they will have zero tolerance of though?

zero tolerance of all things autism does sound like what you describe and would be abusive and unreasonable.

zero tolerance of behaviours which aim to control others seems to be what the original OP had been saying. I don’t think refusing to accept that is abusive at all. Quite the contrary. It’s recognising that when ASD related need to control is impacting on the wellbeing of other members of the family, including other children, that this has become a form of abuse (albeit unintentionally) and that a line has to be drawn. I don’t think adopting a zero tolerance of behaviours that control others is abusive.

2dogsandabudgie · 21/04/2024 15:26

NiceDay2024 · 21/04/2024 13:56

I don’t recognise the thread but I am interested as I am in a similar position with an asd teenager. My teen is very aggressive and has been for ten years to the point of regularly beating me up and trashing the house for hours on end. They were permanently excluded from two schools and they were not in education at all for two years.

I am a single parent and they are the only child at home. If I had a partner and other children, the family would have broken down years ago and my teen would have been removed and taken into care, probably at the age of 10 or 11. This was discussed with social services and it became very close.

This is an interesting discussion. I think family life is affected whether you ‘kick back’ against the behaviours or try to accommodate them.

That must be very difficult, how old is your son now? Does he still hit you?

DoreenonTill8 · 21/04/2024 15:19

@mt9m so you believe that if parents don't let their child, even as an adult do whatever they want whenever they want the child/adult is likely to become suicidal and likely to act on it? That's appalling emotional blackmail.

2dogsandabudgie · 21/04/2024 15:18

Potentialmadcatlady · 21/04/2024 14:22

I didn’t say that. I did not say if you don’t do want they want they will kill themselves. If you read my post correctly you will see that I said a lot of the training goes too far, doesn’t give the person a safe base where they can be themselves. I also said that my ds has learnt how to cope outside the home as he has the support he needs at home to be himself.

It depends on what you mean by being themselves and whether that has a negative impact on other family members. All children need a safe home environment not just children on the spectrum.

My autistic son was aggressive when younger. I had to have a zero tolerance approach to that otherwise my other children and myself would have been hit plus other children at school. He had to learn that no matter how frustrated/angry he felt, hitting another person could not be an outlet to release that.

mt9m · 21/04/2024 15:15

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twelvexahomob · 21/04/2024 15:05

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EnglishBluebell · 21/04/2024 15:03

Silkymum · 21/04/2024 08:59

I don't think sudden sweeping changes like zero tolerance approaches ever work well with autistic kids. But I do think that they need boundaries, and that there is a danger with the current trend for lowering demands that what happens is that child's window of tolerance shrinks and shrinks until they are not only school refusing but refusing all the demands of social life, and making family life intolerable for the other members of that family. So finding a balance between the needs and wants of everyone in the household, and slowly and steadily working on boundaries and social behaviours to help everyone to live together and in the social world, is really important. Really hard to find that balance, but letting an autistic child believe they are in control of everyone around them as just as scary for them as if is for a NT child. They need to know that their care givers can keep them safe and that the world is not going to fall apart if they have a meltdown. Permissive parenting approaches do not teach the child this, instead it teaches them that they are out of control and nobody can protect them because when they push the boundary they find a curtain where a wall should be.

Worked fine in our house

EnglishBluebell · 21/04/2024 15:01

Worked perfectly for my DC. She no longer vocal stims

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