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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
BustyLaRoux · 23/04/2024 08:02

Hoardasurass · 23/04/2024 06:13

@AllPrincessAnneshorses please reas the rest of my posts.
Also when people use terms such as zero tolerance they should understand what they are advocating for.

I think it’s important to understand what aspect of behaviour is being zero tolerated though. Zero tolerance of controlling others’ behaviour. Acceptable. Zero tolerance of harmless behaviours (stimming, etc) not acceptable. Harmful actually. No one should be “training” someone’s ASD out of them! Not that that is even possible. But we shouldn’t be accepting controlling behaviour as permissible as that can be harmful to others.

LakeSnake · 23/04/2024 09:40

This reply has been withdrawn

This message has been withdrawn at the poster's request

WaitingForMojo · 23/04/2024 12:08

AllPrincessAnneshorses · 22/04/2024 23:18

They are not talking about ABA, afaics.

Are you saying that the autistic person should just rule the roost until such time ( if ever)as they feel like allowing anyone to not obey their every demand? Anxiety thrives on restriction, it isn't in fact assuaged by it.

That’s true when it’s purely anxiety. Not when there are sensory issues at play, in my experience, when what you are dealing with is actually overload. In these circumstances, reducing stimulation is essential for that person to be able to process cognitively and thus begin to address any anxiety.

Packetofcrispsplease · 23/04/2024 13:09

I think reasonable adjustments need to be made for the autistic person .
They can’t be allowed to dictate absolutely everything the family does , compromise is necessary.
The autistic person can be given reasonable choices in certain situations.
Mum of 3 , one is autistic and I am exhausted

minuette1 · 23/04/2024 13:44

This reply has been deleted

This message has been withdrawn at the poster's request

As an aside do you know that people can just click on edited and see what you wrote - so real point replacing your text with an full stop. If you don't want your comments to be visible you should contact MNHQ to ask for it to be removed..

MargaretThursday · 23/04/2024 18:13

WaitingForMojo · 22/04/2024 23:12

So I’m wondering how it would work in practice if you say that eg autistic people shouldn’t be masking at home so NT should learn and adapt to ASD communication. Which then makes home a non safe place for NT where they can’t be themselves?

why would it mean that? Why would the autistic person unmasking mean that the NT person had to mask?

also, home is likely to be the only place the ND person is able to do that, whereas the NT person can be freely unmasked NT wherever they go?

I don't think it's as clear cut as a NT person is freely "unmasked" wherever they go.

I'm fairly certain I'm NT, but I find being out of the house dealing with other people at work all day pretty exhausting. Even socialising with friends I find tiring. And when I get back I need to have a break where I can relax or I do struggle mentally. I need to have a place I can relax and be myself without thinking too. Home is my safe place where I can do that. I could not do it anywhere else.

LakeSnake · 23/04/2024 18:21

I’m chronically ill.
Im masking being well when I’m out and about all the time. From conversations with people, interactions etc… to smiling and saying ‘yep I’m great’ when I just feel like lying down and I’m in complete survival mode.

And still I’m NT.

GoodnightAdeline · 23/04/2024 18:21

MargaretThursday · 23/04/2024 18:13

I don't think it's as clear cut as a NT person is freely "unmasked" wherever they go.

I'm fairly certain I'm NT, but I find being out of the house dealing with other people at work all day pretty exhausting. Even socialising with friends I find tiring. And when I get back I need to have a break where I can relax or I do struggle mentally. I need to have a place I can relax and be myself without thinking too. Home is my safe place where I can do that. I could not do it anywhere else.

Literally 100% of my friends feel this way

Unless we’re all ND, I’d say it’s the human condition, only everyone thinks it’s only them experiencing it

LakeSnake · 23/04/2024 18:23

Thanks @minuette1

I wrote something and realised it didn’t convey what I wanted to say.
I probably need to take time to write it again.

soupfiend · 23/04/2024 18:39

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

LakeSnake · 23/04/2024 18:44

I actually don’t quite agree there.

Playing the role for the situation is something I’ve done many times.
But it’s totally different than the masking I do nowadays because of my illness. It’s more fake. It takes more energy. Not comparable imo.

Saying that ‘everyone is masking, it’s just being human’ is a bit too close to ‘everyone is on the autistic spectrum’ because some times we struggle to read other people’s emotions etc…

Hoardasurass · 23/04/2024 19:43

yellowlupins · 23/04/2024 06:40

I think that probably the use of "zero" here is problematic, because it implies that no allowances would be made for any deviation from the NT "norm", however I think that many people, myself included didn't read the original thread in that way, and interpreted it to be hyperbole on the part of the Orginal poster, and was said in a way of readdressing the balance in her household, rather than actually implying "zero" tolerance in any shape or form.

I suspect that the problem is with the use of the term "zero tolerance" for many of us on the spectrum (of a certain age) it has become a phrase to fear as we endured horrific abuse under the guise of helping us fit in. It didn't work and everyone I know who went through it and its rebranded versions (aba, afaics) has had a mental breakdown because of it, some of us broke during the abuse others years later.
People who use the term without knowing the history of it to mean something else as appears to be the case in this thread end up talking at cross purposes with those of us who do

soupfiend · 23/04/2024 19:54

LakeSnake · 23/04/2024 18:44

I actually don’t quite agree there.

Playing the role for the situation is something I’ve done many times.
But it’s totally different than the masking I do nowadays because of my illness. It’s more fake. It takes more energy. Not comparable imo.

Saying that ‘everyone is masking, it’s just being human’ is a bit too close to ‘everyone is on the autistic spectrum’ because some times we struggle to read other people’s emotions etc…

I say everyone is masking (although I wouldnt necessarily use that word) because as another poster says its a human trait, not necessarily an autistic trait, in my view.

I dont think its anything like saying everyone is ND at all.

OutsideLookingOut · 23/04/2024 19:58

soupfiend · 23/04/2024 19:54

I say everyone is masking (although I wouldnt necessarily use that word) because as another poster says its a human trait, not necessarily an autistic trait, in my view.

I dont think its anything like saying everyone is ND at all.

I don’t think everyone had to mask to the same extent - that is what I interpret that poster as meaning. I’ve found that in a male dominated environment, also when dealing with a chronic illness (my condolences to that poster by the way) and also because of my race. It has lead to burnout for me and all without being ND that I know off.

WaitingForMojo · 23/04/2024 22:06

The masking issue is really tricky isn’t it, I can totally see the poster’s point that NT people can also be drained by social situations etc.

I do think that is different from masking, as ND people are asked to behave in a way that’s contrary to their neurology and police their own every move, even within their own families. We’re also asked to suppress stimming etc and not allowed access to any of the strategies that can help.

I also know people who say ‘but that’s the same for all of us’ who are clearly autistic but can’t see that themselves, because they see autism as being something different.

GlomOfNit · 24/04/2024 08:32

I'm finding this a very thought-provoking thread, but it's hard to read and there is so much I don't agree with here. However, I'll add my twopenn'orth.

I'm the parent to a severely autistic son in his early teens, and he has significant learning disabilities too, which combine pretty seamlessly with the autism. It's impossible to separate these conditions from one another, just as it's impossible to separate them from my son. If he didn't have autism, and to this severity, he would be an entirely different person.

His autism informs everything he does, is interested in and how he functions. To train him out of any outward manifestations of this has, at times, seemed futile, as we know his brain is simply wired that way. We can't change the wiring, and we know that the behaviours are a symptom of the wiring, or sometimes a way of coping with the wiring of his brain coming up against the rest of the world.

But. I do try sometimes. We would never have a 'zero tolerance' approach - what a brutal, stupid phrase! 'Zero tolerance' with my child would look like - probably him locked up in a bare room somewhere and the rest of us trying to ignore his screaming.

But we try to tweak and modify his behaviours. Now he's 13 he's a bit more amenable to reasoning with. But please remember - cognitively, he's mostly about 3/4 (and yes we did have this assessed two years ago, privately because the LA were utterly crap and had never done an educational psychologist assessment at a point when he was able to co-operate with the tasks, and we needed an assessment of his abilities in order to get him into a far better special school). So it's very hard for him to grasp concepts like deferred gratification, or pro quid quo, or just plain and simply 'no, you can't do that, it's dangerous!'.

At 13 he is wiry-strong and if he wants to do something it's almost impossible to stop him physically. So yes, our family life is reduced. We take my older son off to do certain things and the other one of us does something lower key with my autistic son. Family days out are a challenge and very limited in scope. Holidays are a challenge but he does actually like travelling and exploring. Every time we get on a plane for the very short flight we take each summer to the same place, I think 'maybe this will be the last time, this might be the last time he's allowed on, he might kick off.' Our lives are becoming smaller. And I feel like we sleep-walked into this - but what are the alternatives? ABA was never an option, it's intensive, requires vast funds that we don't have, and very few special schools in the country support it. (plus we disagree with its central tenet, that you focus on the behaviour rather than the iceberg of neurology beneath it). We have a great school for him now but it's a day school. Getting any sort of respite care including nights in a unit at school needs a social worker, and thus far we haven't been able to get one. He's getting violent in his meltdowns as his teenage hormones kick in. So hey, maybe that will help get a social worker. How bruised do I have to be before someone finally gives a shit, eh?

He is often a joyful, lovely, gorgeous boy. He takes joy in all sorts of things and that gives us joy. He'll always have LDs alongside the autism that is part of him.

Our lives, and his life, seems lightyears away from NT society's view of 'an autistic kid' and we feel invisible. Please don't forget about people like us.

WaitingForMojo · 24/04/2024 09:45

GlomOfNit · 24/04/2024 08:32

I'm finding this a very thought-provoking thread, but it's hard to read and there is so much I don't agree with here. However, I'll add my twopenn'orth.

I'm the parent to a severely autistic son in his early teens, and he has significant learning disabilities too, which combine pretty seamlessly with the autism. It's impossible to separate these conditions from one another, just as it's impossible to separate them from my son. If he didn't have autism, and to this severity, he would be an entirely different person.

His autism informs everything he does, is interested in and how he functions. To train him out of any outward manifestations of this has, at times, seemed futile, as we know his brain is simply wired that way. We can't change the wiring, and we know that the behaviours are a symptom of the wiring, or sometimes a way of coping with the wiring of his brain coming up against the rest of the world.

But. I do try sometimes. We would never have a 'zero tolerance' approach - what a brutal, stupid phrase! 'Zero tolerance' with my child would look like - probably him locked up in a bare room somewhere and the rest of us trying to ignore his screaming.

But we try to tweak and modify his behaviours. Now he's 13 he's a bit more amenable to reasoning with. But please remember - cognitively, he's mostly about 3/4 (and yes we did have this assessed two years ago, privately because the LA were utterly crap and had never done an educational psychologist assessment at a point when he was able to co-operate with the tasks, and we needed an assessment of his abilities in order to get him into a far better special school). So it's very hard for him to grasp concepts like deferred gratification, or pro quid quo, or just plain and simply 'no, you can't do that, it's dangerous!'.

At 13 he is wiry-strong and if he wants to do something it's almost impossible to stop him physically. So yes, our family life is reduced. We take my older son off to do certain things and the other one of us does something lower key with my autistic son. Family days out are a challenge and very limited in scope. Holidays are a challenge but he does actually like travelling and exploring. Every time we get on a plane for the very short flight we take each summer to the same place, I think 'maybe this will be the last time, this might be the last time he's allowed on, he might kick off.' Our lives are becoming smaller. And I feel like we sleep-walked into this - but what are the alternatives? ABA was never an option, it's intensive, requires vast funds that we don't have, and very few special schools in the country support it. (plus we disagree with its central tenet, that you focus on the behaviour rather than the iceberg of neurology beneath it). We have a great school for him now but it's a day school. Getting any sort of respite care including nights in a unit at school needs a social worker, and thus far we haven't been able to get one. He's getting violent in his meltdowns as his teenage hormones kick in. So hey, maybe that will help get a social worker. How bruised do I have to be before someone finally gives a shit, eh?

He is often a joyful, lovely, gorgeous boy. He takes joy in all sorts of things and that gives us joy. He'll always have LDs alongside the autism that is part of him.

Our lives, and his life, seems lightyears away from NT society's view of 'an autistic kid' and we feel invisible. Please don't forget about people like us.

Thank you, you’ve expressed that very eloquently and it’s a critically important contribution to this thread. It must have been very hard to write.

I know that there can be a divide between autistic adults and the parents of non verbal autistic children with LD’s, and that is so unhelpful to overall understanding. I feel wary of saying anything that might sound patronising or upsetting but I’m so glad you took the time to post here so that your ds and others like him aren’t overlooked in the discussion.

NiceDay2024 · 24/04/2024 10:43

2dogsandabudgie · 21/04/2024 15:26

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

We are ten years on now and my dc is 18. They are back in education (not mainstream) and the aggression is less. However, for several years the violence was off the scale, towards me and other carers and teachers. My child would not have been able to stay at home if there had been other children at home.

My instinct has always been that there should be normal household rules and routines and that dc should conform as much as they can, taking into account their needs where possible. But I could not live the way I wanted (still can’t) because of my dc’s anger and aggression which was not fair on the neighbours due to the noise, disruption and frequent police visits.

GlomOfNit · 24/04/2024 17:53

WaitingForMojo · 24/04/2024 09:45

Thank you, you’ve expressed that very eloquently and it’s a critically important contribution to this thread. It must have been very hard to write.

I know that there can be a divide between autistic adults and the parents of non verbal autistic children with LD’s, and that is so unhelpful to overall understanding. I feel wary of saying anything that might sound patronising or upsetting but I’m so glad you took the time to post here so that your ds and others like him aren’t overlooked in the discussion.

Thanks, Mojo. I really appreciate that, particularly since you yourself are autistic (did I get that right? I've not read the entire thread yet).

We just don't know what the future holds for our family. Provision being what it is, I dread him turning 19 and falling out of the 'education provision'. We really hope by then we'll be able to get him a meaningful and lovely live-in college or residential home. And just typing that would have been unthinkable a couple of years ago, but we can see that him living with us until we drop is just not sustainable, practical or desirable. Breaks my heart. We all want our children to become independent, spread their wings and be able to function away from the nest. When a child is incapable of independence, it doesn't mean that they shouldn't still be able to live away from home. But I don't even know if he could countenance such a thing.

I mean, he'll have to, one day. Sad

WaitingForMojo · 24/04/2024 20:33

GlomOfNit · 24/04/2024 17:53

Thanks, Mojo. I really appreciate that, particularly since you yourself are autistic (did I get that right? I've not read the entire thread yet).

We just don't know what the future holds for our family. Provision being what it is, I dread him turning 19 and falling out of the 'education provision'. We really hope by then we'll be able to get him a meaningful and lovely live-in college or residential home. And just typing that would have been unthinkable a couple of years ago, but we can see that him living with us until we drop is just not sustainable, practical or desirable. Breaks my heart. We all want our children to become independent, spread their wings and be able to function away from the nest. When a child is incapable of independence, it doesn't mean that they shouldn't still be able to live away from home. But I don't even know if he could countenance such a thing.

I mean, he'll have to, one day. Sad

I am autistic, and my children are too, although they don’t have learning disabilities like yours. They do have significant difficulties with functioning in the world and I know that I worry hugely about the future for them, especially when inevitably one day I’m not here. That must be magnified times a million for you and whilst I don’t like it when my children‘s issues are dismissed by some because they don’t have learning needs, I think it’s really important that children and adults like your ds, and their families, aren’t overlooked in discussions around autism. It doesn’t have to be a competition as to whose needs are greatest, as sometimes it seems to be.

It struck me that you say that without autism, your son would be a completely different person. I agree and that’s how I feel about myself and my dc.

BustyLaRoux · 25/04/2024 15:19

Is anyone on this thread actually saying they want to try and train someone’s autism out of them though? There are a lot of people talking about how inappropriate that is (I agree!!) and how zero tolerance as a blanket approach is abusive. Again I would agree, if applied to a zero tolerance approach to autism and associated behaviours. Forgive me if I’ve misunderstood but has anyone actually advocated for that on this thread.? I’ve read many many pages -‘d I can see a lot of desperate parents trying to balance needs and manage the effects of controlling behaviours. Controlling behaviours which can in themselves become abuse to the other members of the family.

Hoardasurass · 25/04/2024 17:21

@BustyLaRoux yes unfortunately some of the now deleted posts did, including 1 who boasted about "successfully" stopping their dc from stimming.

BustyLaRoux · 25/04/2024 17:40

Hoardasurass · 25/04/2024 17:21

@BustyLaRoux yes unfortunately some of the now deleted posts did, including 1 who boasted about "successfully" stopping their dc from stimming.

Ah OK I must have missed those. Gosh I’m so ignorant then. Assumed no one in this day and age could possibly think like that! I do agree that perhaps a zero approach to controlling behaviours (when in relation to other people) could, in some cases, be beneficial to all. But that’s of course dependant on the individuals involved and the circumstances. I can’t imagine how anyone could say they were proud of drumming the autism out of a child! How dreadful. Did they delete their own posts? Or did MN do it for them?

Hoardasurass · 25/04/2024 18:04

Mnhq deleted it thankfully.
I agree that controlling behaviour should be managed in a compassionate but firm way to minimise the negative affect on everyone including the autistic person

bendmeoverbackwards · 03/05/2024 23:21

fieldsofbutterflies · 21/04/2024 14:54

my points stand- willfully ignoring a child’s needs is traumatic. The stats say it all, other people have said it I don’t need to repeat them.

Most people aren't talking about ignoring a child's needs, though. They're talking about managing the needs of one person against the (different) needs of everyone else in the home.

I'm autistic myself and I'm eternally grateful that my parents had boundaries and taught me that certain behaviours weren't okay at certain times. I'm also glad they helped me overcome my sensory issues around maintaining personal hygiene - especially with brushing teeth and taking showers.

Helping autistic people cope with the real world isn't about ignoring their needs, it's about helping them balance their needs with other people's, and about teaching them appropriate ways of dealing with (eg) sensory overload or overwhelm without controlling other people's environments in order to do so.

Really interesting @fieldsofbutterflies Can you give some examples of the boundaries your parents put in and how they helped you? Currently struggling with my 17 year old. I’ve made too many accommodations for her and know I need to reintroduce some boundaries for all our sakes. But for me living through the short term pain is hard.