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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Anyone else noticing the uptick in open hostility towards people with ASD?

949 replies

FFSakeDrinkSake · 17/07/2024 03:05

As the title says. It feels like it's open season recently. In the last few weeks alone I've seen many threads questioning the validity of Asd, the credentials of those diagnosing the condition, the 'explosion' of diagnosis', the 'fact' that you qualify for extra benefits if you are autistic and/or have ADHD, the apparent drain on resources kids with ASD have on the educational sector depriving others and most recently the idea that someone (self diagnosed) can 'outgrow' autism. Most of which contain the worst misinformation about what we're trying to deal with on a daily basis and making it sound like we're just trying to .. i dont even know tbh.. scam our way through life?

Disclaimer NATAAT.

OP posts:
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17
WaitingForMojo · 18/07/2024 15:57

summershere99 · 18/07/2024 15:26

I haven't read all the replies, so not sure if this has been covered. I'm not sure if there is an increase in hostility or not. I have 'NT' children (though I dislike that terminology) and actually think it's one of the issues when talking about ASD that creates a division (and so yes, perhaps some hostility / frustration).

I do think there are times when ALL behaviour of children with SEN is put down to them having SEN and is rarely, if ever, considered to be as a result of poor parenting. But almost every negative behaviour of DC when you have 'NT' children is blamed on the parenting.

So yes, parents of SEN children can, and do, use the diagnosis to not take responsibility for the behaviour of their child in school or other situations in a way that parents of NT children are very rarely allowed to do. I don't have an 'excuse' for my DCs behaviour. But that doesn't mean that my DC are going to find all social situations easy and I struggle with this expectation (often implied on here) that NT children should be displaying close to perfect and age-appropriate behaviour.

I also think that trying to provide for all children - regardless of SEN - in a regular school setting is just not working. It does sometimes mean that teachers are having to spend a huge amount of energy on a small number of children, at the expense of 25 others. It's not sustainable. And I totally get why as a parent you want the best for your child.. and if they have high needs you want them to have the attention and support they need. But those parents need to remember that there are other children in that class who also have needs that are not being met, or who need to be kept safe from a child who is having violent outbursts. And yes, education is of course every child's right, but that doesn't mean they should all be in the same setting. I really think there needs to be a huge shift in the types of school settings on offer so that all children can receive the support they need. But the system at the moment is broken.

I agree that the system needs to change. There is no provision for dc like mine, and even for profoundly disabled dc, special school places are hard to get.

The thing is that ime huge amounts of resources aren’t directed to a few dc. They’re generally left to crack on with it and blamed when they can’t.

My dc aren’t violent or ‘badly behaved’ in school though. They are the quiet ones who shut down and then melt down at home. They cause no trouble so get overlooked until they can’t cope at all.

SummerDays2020 · 18/07/2024 15:57

Laughingoverspiltmilk · 18/07/2024 15:49

This is actually a really good explanation of one of the reasons the hostility is increasing. Parents of NT kids are seeing their children impacted by poor support provisions for autistic children (and of course no child should have to be in fear of physical violence at school). As always happens (and this is is prevalent across lots of area that it seems to be human nature so I'm not targeting this particular poster here), rather than the hostility being focused on the lack of resources to facilitate inclusion (or to allow for separate provision where appropriate), it's on the disabled people trying to live their lives.

Edited

Yes, as if we like the fact our DC aren't getting an education. We dislike it as much as any other parent who may feel their DC is getting less resources than they need because of all the SEN DC.

WaitingForMojo · 18/07/2024 15:58

Plus, there were many examples of violence and poor behaviour amongst NT children in my dc’s schools!

TomeTome · 18/07/2024 16:01

Perzival · 18/07/2024 15:16

Hi, yes I have heard this many times. I do think some people have severe autism and some people have autism and severe ld.

I do think that some people with autism who are advocates or autism self advocates do other this part of the autism community for a few reasons:-

It goes against their narrative especially where that narrative is of neurotribes.

It shows autism at it's worst and not the Dan Akroyd etc al successful and flourishing type.

It is seen as diminishing their needs (I believe aside from the Hitler link, part of the reason the dxs were merged was due to the way the non classical autism was seen as milder and therefore not worthy of investment, funding or services).

I read a decent article about it some time ago, I'll try to find it.

We had an inde ep/ cp (very well known and highly regarded) assess ds for his transition to high school (tribunal over provision) we outright asked about ld. He doesn't have ld but he is impacted severly by the various subsets that he was assessed under. A formal ld dx can't be given likewise a iq value couldn't be made (although if it was ot would still be low but as the test is developed for nt people he is being measured in a way which isn't fair). We were categorically told he doesn't have learning disability so I won't refer to him as having that. His autism dx does refer to severe autism though so I'm comfortable using that as a descriptor.

Ds has limited verbal communication skills, has and does use aac etc. He was non verbal completely however he has always been hyperlexic even when non verbal and knows nouns in many languages. These aren't useful skills he doesn't understand what he reads. He could be reading a telephone book or directions or a letter but he wouldn't understand it or act on it. In terms of the other languages he can't use them in any meaningful way, I wish he could. I'd learn any language to baable to know what's he's thinking or wants to communicate. Imagine a teenager randomly saying house in Russion followed by tree in Spanish while sat in the lounge bit cannot answer if he's hurt, if he's hungry, if he needs anything (although we know how to read him). He can learn clearly but on his terms and his interests and can't apply that or rarely applies it. He likes patterns and repeated patterns so alphabets and numbers. He can count and uses that regulate but couldn't use it to time, play hide and seek or do math. He knows the alphabet order of letters but can't write or type a basic letter but can retype something he would use to regulate incredibly quickly (like ecolelia but via keyboard without relevance although we always assume competence so across on it, talk about, question it, get it etc). I dont really want to discuss hygiene etc as it isn't needed/ appropriate but you can guess.

Ds also regressed when he was a toddler- he lost all his learnt skills to that point and the few words he had more or less overnight. It was awful. He was just gone, his personality everything.

Our older son is very bright and will likely get 4a*'s in maths, further maths, chemistry and physics at alevel (no dx or signs of autism, no mh, just a norm teenager). We often wonder how our youngest would be and suspect he would be similar without his autism.

I know there is a least one ep on here so to give an idea his newsy ii scaled score was 1,his wisc-5 subsets were all extremely low (one less than 0.1) and one was very low (fluid reasoning was a 9). With a statement about ld not being able to be diagnosed and the components of his autism.

I think both mh and ld should be talked about as separate to autism while I recognise the impact they have on each other. You can have any of them as a stand alone dx or all of them and they do impact on presentation. It would be clearer all around if severe autism had a set meaning and not severe mh or severe ld.

I hope I've answered that well enough. I'm happy to engage and discuss respectfully but don't want to go down the road that these threads often do.

Well that was a fascinating read because so much of it is/was so like my own child. Amazing.

SummerDays2020 · 18/07/2024 16:02

Perzival · 18/07/2024 15:51

By the same token there are children being denied education for many reasons some nothing to do with disability at all. That wouldn't make them more disabled than someone with say pmld who attends a school.

@WaitingForMojo I had a quick search for that article but can't see it. I did see a huge amount though by googling profound autism all similar discussions to this in various ways.

I'm a nurse so I think we look at things holistically and we determine disability by the ways in which someone is disabled by all aspects of their life.

As an example 2 people with a broken leg - one is able to use crutches, the other can't. The first person is less disabled because they can still move about in a way the other person can't.

I think we are just looking at it in a different way.

Perzival · 18/07/2024 16:06

WaitingForMojo · 18/07/2024 15:51

Thanks so much for this response. I have no wish to go down the route these discussions often take, either, it’s horrible and not at all helpful for anyone.

Your ds sounds wonderful and what I can tell is that he has such a lot of love and support from you, and I hope he is happy in himself, whatever form that happiness takes for him.

I may disagree with you on some points but actually, not in any major way. I don’t feel I have a right to comment on what your DS’s disability should be labelled as, or whether without his autism he would still have a low IQ, because i don’t know him and you do. You are his voice as he can’t speak for himself and i don’t feel that anyone has a right to argue with what you know of your own child and your lives.

I also do feel that your dc is disabled in a way that I, and my children, are not. Others might disagree with me but the fact is that my children have a possibility of an independent life, and can hopefully be taught to advocate for themselves and find their niche, even if that doesn’t look like what we’re taught to think of as normality or success. I only hope for them that it will make them happy, regardless of whether they work, have relationships, etc. i understand that your ds won’t be doing any of those things and that situation is undeniably different from mine.

I do hope there’s some way of these kinds of dialogue not becoming an us and them thing. It really shouldn’t be a competition and I hope you won’t feel hostility from verbal autistic adults in general, because I have massive amounts of respect for the sacrifices and effort you must give to raising your dc. I do too, but mine are different. Your dc has value and so does mine, they shouldn’t be pitted against each other to compete for services and understanding.

What a thoughtful, Kind response. Thank you. I completely agree that non of our children should be competing in anyway.

I wish the best for you and your family.

PoliteCritic · 18/07/2024 16:08

@SummerDays2020 I am sorry I must have got you mixed up with another poster who said her DC could dress and go to the toilet by themselves.

PostItInABook · 18/07/2024 16:09

There is a huge amount of hostility directed at autistic adults who have lower support needs compared to others, not just by neurotypical people but by others with autism and those that care for them. I feel hated by everyone tbh. Maybe that’s partly because I hate being autistic and feel like it’s ruined my life and that it will be the underlying cause of my death, which I know will be at my hands. I’m just waiting for the correct circumstances frankly.

It is quite obvious I am not as ‘disabled’ when I am compared to someone who needs 24/7 care and won’t ever live independently etc. It is obvious that person should receive more additional support, financial and practical, than me. I don’t understand why anyone would ever try to deny that.

But what I also don’t understand is why people feel there is a need to compare in the first place? The differences are clear…obvious…glaringly so. But what do you gain from comparing my needs to someone else’s needs? Other than minimising/dismissing my struggles? I mean, OBVIOUSLY when compared to someone with different struggles and high needs my needs/struggles might appear ‘minor’…..but how does that help you or your kid? And how does that help me? I can tell you that it has a hugely negative impact on my mental health because it implies that I don’t matter, that the struggles I feel and go through shouldn’t actually be an issue, that I should just be able to get on with it and not struggle because they’re minor up issues and am I that shit that I can’t even deal with something minor…..and it actually makes me feel even more inadequate because to me that is my life and it’s fucking hard. And it simply confirms to me what I have already been told/shown and believe in my life……that I don’t matter and have no importance or place in this world. I fit nowhere. I mean I have a job don’t I. But I maintain that at the expense of literally everything else. I have no one. No partner, no kids, no friends. I have nothing in my life. It’s horrible. I hate myself. I hate autism. There is NOTHING positive about it or me and the sooner I can get off this ride the fucking better.

I need to hide these threads because all they do is confirm what I think of myself in black and white. I find them really upsetting.

summershere99 · 18/07/2024 16:15

SummerDays2020 · 18/07/2024 15:50

The point is we don't want our DC in the wrong setting, but we have no choice. And so if they have to go to mainstream we will fight with everything we've got to get their needs met. And if you feel your DC's needs are not being met then you can do the same.

But if you have 20 parents pushing for better support for their child, even 10 parents, where does a teacher or the school even start.. it's just not possible, and I think that sometimes when one child is largely dominating the atmosphere or the resources in a classroom, this must impact on the behaviour of the other children, not in a positive way as they are wanting attention that the teacher just can't afford to give. There just isn't the resources in schools right now to support every child who needs it, but of course, as parents, we think our child, because we know them inside out, is more 'worthy' of support that someone else. But that doesn't necessarily mean it's true. We don't know all the needs of all the other children in school and pushing for non-existent resources doesn't make them magically appear.

WaitingForMojo · 18/07/2024 16:19

summershere99 · 18/07/2024 16:15

But if you have 20 parents pushing for better support for their child, even 10 parents, where does a teacher or the school even start.. it's just not possible, and I think that sometimes when one child is largely dominating the atmosphere or the resources in a classroom, this must impact on the behaviour of the other children, not in a positive way as they are wanting attention that the teacher just can't afford to give. There just isn't the resources in schools right now to support every child who needs it, but of course, as parents, we think our child, because we know them inside out, is more 'worthy' of support that someone else. But that doesn't necessarily mean it's true. We don't know all the needs of all the other children in school and pushing for non-existent resources doesn't make them magically appear.

I don’t think that my child is more worthy, or more in need of support than someone else’s! Far from it. But my job is to advocate for my child. The resourcing issues are not for me to manage.

Rainbowsponge · 18/07/2024 16:23

WaitingForMojo · 18/07/2024 16:19

I don’t think that my child is more worthy, or more in need of support than someone else’s! Far from it. But my job is to advocate for my child. The resourcing issues are not for me to manage.

But it seems so many people now have ‘complex needs to be met’, it stands to reason we cannot do this for more than a certain % of people and it has now got ridiculous. Society cannot provide if it has more people with ‘needs’ than those without.

Rainbowsponge · 18/07/2024 16:23

WaitingForMojo · 18/07/2024 16:19

I don’t think that my child is more worthy, or more in need of support than someone else’s! Far from it. But my job is to advocate for my child. The resourcing issues are not for me to manage.

But it seems so many people now have ‘complex needs to be met’, it stands to reason we cannot do this for more than a certain % of people and it has now got ridiculous. Society cannot provide if it has more people with ‘needs’ than those without.

WaitingForMojo · 18/07/2024 16:26

Rainbowsponge · 18/07/2024 16:23

But it seems so many people now have ‘complex needs to be met’, it stands to reason we cannot do this for more than a certain % of people and it has now got ridiculous. Society cannot provide if it has more people with ‘needs’ than those without.

What’s your answer? That people’s needs are not met? That children can’t access their education?

WaitingForMojo · 18/07/2024 16:27

Which is pretty much what happened tbh, the two of mine whose needs couldn’t be met are home educated. I ran out of fight, but they need and deserve an education so I will provide it.

PoliteCritic · 18/07/2024 16:27

@PostItInABook I am sorry you are struggling so much. Do you have anyone who can give you some support?
I for one would not describe your struggles as minor. You are struggling and sound like you need support from someone who cares about you. Do you have that?

Rainbowsponge · 18/07/2024 16:29

WaitingForMojo · 18/07/2024 16:26

What’s your answer? That people’s needs are not met? That children can’t access their education?

My answer is an investigation into why so many children have needs compared to even 10 years ago. If it keeps rising at the current rate it will be actually impossible to provide for all of them, it nearly is already.

Flowers4me · 18/07/2024 16:32

PostItInABook · 18/07/2024 16:09

There is a huge amount of hostility directed at autistic adults who have lower support needs compared to others, not just by neurotypical people but by others with autism and those that care for them. I feel hated by everyone tbh. Maybe that’s partly because I hate being autistic and feel like it’s ruined my life and that it will be the underlying cause of my death, which I know will be at my hands. I’m just waiting for the correct circumstances frankly.

It is quite obvious I am not as ‘disabled’ when I am compared to someone who needs 24/7 care and won’t ever live independently etc. It is obvious that person should receive more additional support, financial and practical, than me. I don’t understand why anyone would ever try to deny that.

But what I also don’t understand is why people feel there is a need to compare in the first place? The differences are clear…obvious…glaringly so. But what do you gain from comparing my needs to someone else’s needs? Other than minimising/dismissing my struggles? I mean, OBVIOUSLY when compared to someone with different struggles and high needs my needs/struggles might appear ‘minor’…..but how does that help you or your kid? And how does that help me? I can tell you that it has a hugely negative impact on my mental health because it implies that I don’t matter, that the struggles I feel and go through shouldn’t actually be an issue, that I should just be able to get on with it and not struggle because they’re minor up issues and am I that shit that I can’t even deal with something minor…..and it actually makes me feel even more inadequate because to me that is my life and it’s fucking hard. And it simply confirms to me what I have already been told/shown and believe in my life……that I don’t matter and have no importance or place in this world. I fit nowhere. I mean I have a job don’t I. But I maintain that at the expense of literally everything else. I have no one. No partner, no kids, no friends. I have nothing in my life. It’s horrible. I hate myself. I hate autism. There is NOTHING positive about it or me and the sooner I can get off this ride the fucking better.

I need to hide these threads because all they do is confirm what I think of myself in black and white. I find them really upsetting.

Hello @PostItInABook - thank you for writing and I can understand how upsetting these threads are. They upset me too; we are a ND family and my son experiences the world similarly to you - he has a job but he can't do anything else and needs support with other aspects of daily life. I realise I don't know you personally but you do matter and I am wondering if you can reach out to someone (eg a counsellor) for more support. I think hiding these threads may be good thing to do and something I may have to do as they are deeply upsetting.

Perzival · 18/07/2024 16:39

Rainbowsponge · 18/07/2024 16:23

But it seems so many people now have ‘complex needs to be met’, it stands to reason we cannot do this for more than a certain % of people and it has now got ridiculous. Society cannot provide if it has more people with ‘needs’ than those without.

I think this is where some of the hostility comes from. I do also think that the law around sen will be changed (trials are being held and there has been consultations etc for things like a set list of schools ro choose from/ removing parental pref). There just isn't enough money.

I think there's also the issue that some parents/ carers for whatever reason can't advocate for their child/ believe the bs that the school/ la spout.

I know my ds has a specified and quantified ehcp but it was fought for. Likewise respite which will be reviewed in a few months 🤔 so who knows. Ds goes to an amazing out of area school again fought for via tribunal.

Some parents have sn themselves, don't have the finds, are just too exhausted or can't face it.

I do think teachers and sendcos need to take more responsibility. They argue that classes/ resources ate overstretched but then don't give parents the evidence to challenge. Write down the child's needs and the impact, if any assessments are needed or should be considered. Don't just say positive things in reports for fear of offending or upsetting anyone especially of you know a parent is trying to get an ehcp/ ehcpna.

Perzival · 18/07/2024 16:41

Sorry about all the typos in my posts, it's a mix of auto correct and me just not checking.

LlamaNoDrama · 18/07/2024 16:42

@rainbowsponge I think the current education system may have highlighted a lot of children who previously would have gone under the radar. Funding is inadequate, resources aren't there, less support staff, less outside resources available to come in and help like EP,s salt, OT, too much academic focus and formal learning and not enough movement which is very self regulating for a lot of children. I feel if education was properly funded one, a lot less children would require diagnosis to get the support they need, and two, well there would just be less difficulties for everyone all round in education and in accessing it.

LlamaNoDrama · 18/07/2024 16:44

@Perzival can we not perpetuate the myth send parents get to choose any school they want via 'parental preference'. It's simply not true.

Rainbowsponge · 18/07/2024 16:44

Perzival · 18/07/2024 16:39

I think this is where some of the hostility comes from. I do also think that the law around sen will be changed (trials are being held and there has been consultations etc for things like a set list of schools ro choose from/ removing parental pref). There just isn't enough money.

I think there's also the issue that some parents/ carers for whatever reason can't advocate for their child/ believe the bs that the school/ la spout.

I know my ds has a specified and quantified ehcp but it was fought for. Likewise respite which will be reviewed in a few months 🤔 so who knows. Ds goes to an amazing out of area school again fought for via tribunal.

Some parents have sn themselves, don't have the finds, are just too exhausted or can't face it.

I do think teachers and sendcos need to take more responsibility. They argue that classes/ resources ate overstretched but then don't give parents the evidence to challenge. Write down the child's needs and the impact, if any assessments are needed or should be considered. Don't just say positive things in reports for fear of offending or upsetting anyone especially of you know a parent is trying to get an ehcp/ ehcpna.

SEN isn’t underfunded, we spend £10 billion on it every year. The issue is the number of children who want assessments and have needs is skyrocketing beyond anything we could’ve predicted. Social care is the main reason councils are declaring bankruptcy and cutting back other services. Angela Raynor (who herself has a child with SEN due to extreme prematurity) has admitted there is no more money for SEN, the best they can do is give councils a heads up about the budget for a bit longer than they get at the moment.

There Is. No. Money.

Rainbowsponge · 18/07/2024 16:46

LlamaNoDrama · 18/07/2024 16:42

@rainbowsponge I think the current education system may have highlighted a lot of children who previously would have gone under the radar. Funding is inadequate, resources aren't there, less support staff, less outside resources available to come in and help like EP,s salt, OT, too much academic focus and formal learning and not enough movement which is very self regulating for a lot of children. I feel if education was properly funded one, a lot less children would require diagnosis to get the support they need, and two, well there would just be less difficulties for everyone all round in education and in accessing it.

It is properly funded, we spend more per child than the Netherlands, Switzerland and Germany. Our spending isn’t the highest in the world but it’s perfectly reasonable and in line with comparable countries.

PoliteCritic · 18/07/2024 16:49

Rainbowsponge · 18/07/2024 16:44

SEN isn’t underfunded, we spend £10 billion on it every year. The issue is the number of children who want assessments and have needs is skyrocketing beyond anything we could’ve predicted. Social care is the main reason councils are declaring bankruptcy and cutting back other services. Angela Raynor (who herself has a child with SEN due to extreme prematurity) has admitted there is no more money for SEN, the best they can do is give councils a heads up about the budget for a bit longer than they get at the moment.

There Is. No. Money.

It is an enormous amount and rising. There has to be a solution although I do not know what it is.

LlamaNoDrama · 18/07/2024 16:50

@rainbowsponge You genuinely think our education system is appropriately funded? Wow.