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Share your dilemmas and get honest opinions from other Mumsnetters.

To be angry at the ableism here on MN

290 replies

QuitChewingMyPlectrum · 07/09/2023 22:40

I don't see any threads saying cancer is over diagnosed. Or used as an excuse for something.
More and more ableism is showing up here targeting the ADHD and autistic community and I'm pig sick of it.
Overdiagnosis conversations involving those who have no lived experience (your kids don't count, sorry) suck.
You have ZERO idea what it's like to be us.
And you say WE lack empathy.

OP posts:
Thread gallery
9
XenoBitch · 08/09/2023 23:46

Quisquam · 08/09/2023 22:23

@FeelWorthlessAndAshamed

ITA. For all the talk about over-diagnosis and medication, I wonder how many ND women in particular, go undiagnosed for decades and end up with a MH label anyway instead - such as depression, anxiety, BPD….because of the trauma of struggling to cope? There’s a greater stigma around the label of BPD from what I hear, than autism or ADHD!

People see this problem as black or white, instead of the shades of grey?

Absolutely!
On social media, and even in my own social circle, am seeing more women that have the BPD label go on to get assessments for ASD.
A lot of the women I know with BPD were diagnosed after a very brief spell in hospital.. it was like a check box exercise... self harm? Tick! Suicidal behaviour? Tick! Mood swings? Tick!
BPD/EUPD is a shitty label that follows you everywhere. I have had awful experiences when seeking treatment for a broken bone because of my diagnosis.

oynix · 09/09/2023 00:21

This reply has been deleted

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Are you actually going to to make a suggestion on how to protect the poor, innocent neurotypicals from those horrible ND children?

Coyoacan · 09/09/2023 02:00

Would I have been able to empathise as a four year old in reception watching meltdowns? Hell, no, I wouldn't. I'd be, at best, distressed or, at worst, traumatised and refusing to return to somewhere that I was unsure if/when violence and/or extreme emotional distress was accepted

I don't think that children are being traumatised by witnessing another child's meltdown. My dgd was in a class with a boy with quite severe autism when she was six (just before lockdown) and she never mentioned any fright.

ChillysWaterBottle · 09/09/2023 02:11

Trez1510 · 08/09/2023 21:28

I hear what you're saying, and the institutionalisation of people was so very wrong.

I was heavily involved when Community Care (Care in the Community) legislation was implemented. Particularly in sourcing alternative living situations for those being discharged from NHS care.

The vast, vast majority of residents had either a diagnosis of Down Syndrome, Cerebral Palsy or physical disabilities. Those people were relocated to the type of home situation you describe - houses in local communities with on-site support (sheltered housing situation) to allow them to live as independent life as they were (individually) able. Some were allocated their own tenancies (or shared tenancies) with care workers visiting multiple times per day and sometimes someone sleeping over too. We did our absolute best to meet the individual's needs/capabilities in discussion with them and their families.

The minority of residents had diagnoses of Autism. Only a handful of those people were assessed as being capable (with substantial support) of living in even a semi-independent situation. The majority (of the minority) went to a combination of private and NHS residential units where there was no expectation of independent living. Those units were (are) much smaller, much more homely than the 'asylums' in which they previously lived but retain a 'structured' ambience. Interestingly, families (where they were still involved) were very supportive of ongoing full-time care for their loved one where it was suggested to them.

I'll be honest, I have zero idea of how many of those people would be in mainstream education these days. I suspect those with Cerebral Palsy or physical disabilities would definitely be in mainstream school now without question. No-one seems to mention Down Syndrome pupils in my social sphere, so I imagine those pupils work quietly/dilligently and are not disruptive. There is, though. a lot of anecdotal evidence of pupils with Autism/ADD/ADHD in mainstream classes. Unfortunately, usually that anecdata is negative in terms of disruption to fellow pupils and the trauma experienced by those pupils when the pupil with Autism etc. has multiple meltdowns on a daily basis. I'm sure, though, many of the pupils with these diagnoses are 'quiet' in their symptoms and battle through just as they would have (back in the day) without the diagnosis but with the same feelings/anxieties/behaviours/triggers.

FWIW, I'm sad I grew up in a era when people with disabilities were, for the most part, hidden away and recognise as a society we failed those people.

However, I'll be honest, I'm also grateful that I was not traumatised by witnessing multiple violent/emotionally distressing meltdowns on a daily basis. The most 'unusual' event I/we witnessed were fellow pupils who had an accident being despatched to the school nurse, or someone crying because they'd fallen out with their best friend.

For me, that's the massively under-discussed issue - the trauma/impact on children witnessing these events - teachers/fellow pupils being punched, kicked, spat on, being hit with flying objects or the deep distress of the affected pupil - in someone who has been triggered into a meltdown due to noise/lights/not wanting to take off their jumper/sitting in their own excrement for too long etc.

Are we at risk of creating a generation of people with PTSD from being required (without option/discussion/agency) to witness these events? Living on their nerves waiting on the next meltdown and having zero inclination when/how that will occur? Having no idea if they will be in the physical firing line, receive a blow to the head or be hit with a flying chair? Isn't that how victims/the children of DV live?

Of course, all of that, is before we look at the impact on their education due to so much time lost with the teacher doing their best to mitigate/handle the meltdowns. I often wonder if there is correlation between declining mainstream educational standards and the time teachers have to spend handling pupils who are ND?

I don't know the answers to any of it, but I certainly hope those with the appropriate qualifications/research ability are looking at the situation with a wide-angled lens and not focused solely on what is best for the ND child/ren.

This reads like a parody comment. At least you recognise how much society in your 'era' (and clearly you as an individual) failed these people, but such a shame you learned nothing and are still dragging that foul attitude into 2023.

Trez1510 · 09/09/2023 02:40

oynix · 09/09/2023 00:21

Are you actually going to to make a suggestion on how to protect the poor, innocent neurotypicals from those horrible ND children?

I don't recgnise your characterisation of the different groups.

However, if you're unhappy for the damage caused to (as you called them) 'poor, innocent neurotypicals', perhaps you could suggest a solution to protect them from the 'horrible ND children'. Unless, of course, you consider it fine for small children to be subject to unpredictable, uncontrolled, aggressive and violent behaviour and/or witness extreme emotional distress? I've already stated upthread I don't have the answers and hope the experts do have solutions that suit everyone.

Parents of ND children have been voicing their opinion. Their answer (to protecting poor, innocent neurotypicals) is separate school provision. I probably agree, but saying so without being a parent of a ND child opens one up to allegations of ableism, bias and considering ND children to be 'horrible' ..... usually from parents of ND children who think only of their own child's needs. However, when parents of NT children consider their child's needs (to be education in a calm, non-aggressive/violent environment) they are considered ableist and biased.

I believe as a society we have now (rightly) recognised the trauma caused to children being subjected to incidents of violence and/or extreme emotional distress (even when those incidents do not directly involve them) within their own homes. That's great, but we've to accept it in the school setting because ...... ???

Trez1510 · 09/09/2023 02:51

ChillysWaterBottle · 09/09/2023 02:11

This reads like a parody comment. At least you recognise how much society in your 'era' (and clearly you as an individual) failed these people, but such a shame you learned nothing and are still dragging that foul attitude into 2023.

Yeah, of course.

I, as a child, individually failed these people. Did you not read the work I undertook as Community Care legislation was implemented?

Can you be more specific as to what you perceive to be my foul attitude?

Is it, perhaps, my view that children, who are entitled to an aggression/violence free home environment, should also be entitled to the same in the education setting?

Or it is my empathy for teachers who are being subject to physical violence in their workplace that offends you?

DaisyWaldron · 09/09/2023 06:23

Speaking as the parent of NT children, they haven't been traumatized by the presence of autistic classmates. They've just learned that the world is made up of lots of different types of people, in the same way that they weren't traumatized by going to school with children with epilepsy, or children who were refugees, or children with learning difficulties. The main experience of trauma at school was when one of them was bullied by other NT children and the other was sexually harassed by a NT child.

Anewnamea · 09/09/2023 06:33

@Trez1510 I think you have a point in some of the things you say.

I’m ND and found it really unsettling even as an adult being in a particular secondary school where pupils including adult sized male children would routinely be violent to predominantly female staff . As an educator I was fortunate enough not to have suffered physical violence or been spat on myself but it would have badly affected me if I was and would have likely left that work environment immediately. I’m already naturally hyper vigilant.

I wouldn’t say I was a quiet ND as such. I annoyed teachers as a kid by my constant chatter, and forgetting homework etc. They probably don’t have fond memories of me and the feeling is mutual as to this day I believe my teachers were hostile towards any kind of difference which inconvenienced them ever so slightly and that wasn’t great . But I don’t think violence against teachers should be normalised which is the other extreme.

So to some extent you could say I was disruptive myself, but in no way was I violent or was anyone intimidated by me. I didn’t swear or throw things or threaten anyone. No one did in our school which I’m grateful for.

Personally I get thrown off by someone invading my space or making extremely loud sounds, so chairs flying around a classroom or explosive outbursts at teachers would likely have triggered me as a child.

It wouldn’t matter if they are ND or NT - and many of the kids who do this may be the latter tbh - it’s the behaviour that would have bothered me.

I’m not sure what the answer is but it’s tricky.

Anewnamea · 09/09/2023 06:43

DaisyWaldron · 09/09/2023 06:23

Speaking as the parent of NT children, they haven't been traumatized by the presence of autistic classmates. They've just learned that the world is made up of lots of different types of people, in the same way that they weren't traumatized by going to school with children with epilepsy, or children who were refugees, or children with learning difficulties. The main experience of trauma at school was when one of them was bullied by other NT children and the other was sexually harassed by a NT child.

Are these autistic children being violent though? I think what the poster was saying is that some kids may be traumatised by displays of violence in the confines of a classroom. It’s not as simple as being traumatised just because someone is ND and sitting next to them.

Being a refugee or having a learning disability doesn’t automatically lead to violent behaviour so being in a class with refugees of course shouldn’t traumatise them.

It could be that children nowadays are so used to extreme classroom disruption and acts of violence that they genuinely don’t care, or mind…but it would be interesting to find out how the majority feel.

And it’s not about ND vs NT in my opinion, as you can get violently disruptive kids on both “sides”.

Tr1pleJump · 09/09/2023 06:47

ND children are far more likely to have been bullied. My children were- seriously. That causes trauma which both have needed treatment for. Maybe all bullies should be educated elsewhere. 🤔

Also meltdowns within ND are caused by needs not being met and reasonable adjustments not being made. Children in wheelchairs have a right to have their needs met, ND is no different. I have worked in education my whole life and not seen disruption and trauma caused by ND children. Most ND children are pedalling hard to fit in and meltdown happens outside of school. When it happens in school decent educators work out how to support and adjust so occurrence at school is rare.

Frankly if we’re talking about overused words maybe some posters should look at the word “ trauma”. ND children are far more likely to be struggling with it than NT children.

Also just so you’re aware meltdowns and distressing behaviour in school are by no means exclusive to ND children. Try being in a reception class the first few weeks of term!

NoMor · 09/09/2023 06:49

This reply has been deleted

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I don't think your main problem is bias, I think it is ignorance. You have no first hand knowledge of autistic children yet you make many damaging assumptions. Tell their parents to explain to your great niece/nephews what is going on with those autistic children when they have those meltdowns, knowledge leads to acceptance, ignorance leads to fear.

Tr1pleJump · 09/09/2023 06:53

Ime ND do better in and prefer quiet calm working environments. They are often NOT the children causing disruption.

Trez1510 you are showing a huge amount of ignorance and prejudice are regards ND children.

Tr1pleJump · 09/09/2023 07:04

Trez1510“The issue regarding the misbehaviour of NT children is that is addressed, and sanctions put in place. That simply does not happen with ND pupils who are the major disruptors of lessons. The price is paid by all other pupils, NT and quiet ND alike.”

This is simply not true and simply prejudice.

Jjxnxnxnnc · 09/09/2023 08:01

The number of people.We know who are self diagnosing their children as ND is really significant . Removing the stigma around ND has led to a minority of parents is it the label to deflect from poor parenting and other social factors effecting behaviour. To those with genuine ND conditions I think there is a huge amount of sympathy but we shouldn't stop discourse around the increase in prevalence of such conditions or the reasons as it impacts the whole of our society. I don't think it is 'ableist' to discuss ND especially when it comes to education as schools are finding it a challenge to how to support a large number of pupils with diagnosed or alleged ND conditions.

Jjxnxnxnnc · 09/09/2023 08:22

To complicate matters there are children whose parents have medical diagnoses for their cHildren for ASD whose children simply do not acknowledge the diagnosis themselves and do not identify as such. Children do not want an ADD label following them around school and ASD is not mentioned in friendship groups or potential future partners.

You have a situation where parents actively pursue diagnoses for support for themselves and for their child's education but have not considered how a child is going to deal with a labelled condition in social contexts..

It is unfortunate that in local secondary ND conditions are mocked with teachers challenging poor behaviour being met with snide comments about 'you can't discipline him because he has ASD and its not his fault'. The children themselves are making their own judgments about whether their peers really are ND and I guess this is another factor in how we perceive and relate to ND.

SantaBarbaraMonica · 09/09/2023 08:24

I doubt it’s black and white.

Jjxnxnxnnc · 09/09/2023 08:31

I don't think as well as should try to reject the experience of parents whose children at MY but are in classes with children whose behaviour disrupts their learning. This must be horrible for the parent.

Independent on whether disruptive behaviour is associated with ND these voices should have a forum and shouldn't be necessarily about s down as being 'ableist'. These are genuine concerns many face.

Tr1pleJump · 09/09/2023 08:50

Jjxnxnxnnc

If has been explained over and again why there is an increase. It isn’t parents pushing inaccurate labels. You need a shed load of evidence just to get a referral and then there is a massive waiting list.

So I’ll say it yet again. We are far more informed now particularly with girls as to how autism can present. Diagnostics are better. Before it was geared towards boys. With better knowledge less girls are going under the radar for years, with it has come siblings and parents being picked up. It’s a good thing. Covid caused a massive backlog.

As for schools struggling to support those with a ND diagnosis. A diagnosis gets you zilch.All SEN is massively underfunded and that is why schools struggle. In our setting ND hadn’t been discussed once as an issue re us “ coping”.🤔I’d be very surprised if any school did. We have a massive range and variety of SENs and we just get on with it and prove good interventions and a happy environment for all. It is ableist to discuss this.An increase in children getting an ASC diagnosis is neither here nor there, you wouldn’t suggest more visible disabilities be under scrutiny.

I think there is a fair bit if sexism with this too. Women and girls don’t fit the stereotypical picture of ND and to many should just get on with it.

Jjxnxnxnnc · 09/09/2023 09:08

@Tr1pleJump

I absolutely agree that ND exists and there is a whole raft of diagnostic tests that can brought into play. For those with an ND child it must be extremely challenging and as a society we need to lend that support.

However for continued societal support I think there is a genuine debate about the reasons and consequences of increased prevalence of ND and in particular how it impacts our educational system. I don't think it is necessarily ableist to discuss schooling in general and sometimes discussions about school environment do touch upon ND.

There is unfortunately cynicism in our local community about ND prevalence at some of the poorer performing schools and I think honest debate is needed to counter it and shutting down voices that may appear offensive may actually be counter productive.

The proportion of pupils at some of our area's poor performing schools who are ND is really quite significant and there also would appear to be some correlation with socio economic status in some cases. You do actually get ableism in the fact that classes are unfairly being labelled as the ADHD/ASD class when academic setting is applied and children (sometimes being cruel) will highlight this.

Tr1pleJump · 09/09/2023 09:10

Jjxnxnxnnc

Links to your data supporting this please.

NewName122 · 09/09/2023 09:12

I have a friend that will often say 'well we are all a bit autistic, we could all fit on the spectrum somewhere'. I obviously disagree with her but as a parent with an ASD/adhd child I see my friend does have many traits and I think that's her way of saying she is like that but has no diognosis. Next time I might suggest she gets assessed to see if it clicks in her brain.

Jjxnxnxnnc · 09/09/2023 09:27

https://link.springer.com/article/10.1007/s00127-017-1453-2

A study looking into links between finance and ADHD.

I think if you do look at the research there is also a social element to this as well as an individual and discussions about how neurodivergence fits in with general social models is interesting.

There are some reasonablle correlations between %FSM at schools and %children with SEN. The reasons between the interplay of parental economic class and disability is probably really quite complex but is of academic interest.

The relationship between financial difficulty and childhood symptoms of attention deficit/hyperactivity disorder: a UK longitudinal cohort study - Social Psychiatry and Psychiatric Epidemiology

Purpose Attention deficit/hyperactivity disorder (ADHD) is associated with socioeconomic status (SES), in that children who grow up in low SES families are at an increased risk of ADHD symptoms and diagnosis. The current study explores whether differen...

https://link.springer.com/article/10.1007/s00127-017-1453-2

NoMor · 09/09/2023 09:50

Jjxnxnxnnc · 09/09/2023 09:08

@Tr1pleJump

I absolutely agree that ND exists and there is a whole raft of diagnostic tests that can brought into play. For those with an ND child it must be extremely challenging and as a society we need to lend that support.

However for continued societal support I think there is a genuine debate about the reasons and consequences of increased prevalence of ND and in particular how it impacts our educational system. I don't think it is necessarily ableist to discuss schooling in general and sometimes discussions about school environment do touch upon ND.

There is unfortunately cynicism in our local community about ND prevalence at some of the poorer performing schools and I think honest debate is needed to counter it and shutting down voices that may appear offensive may actually be counter productive.

The proportion of pupils at some of our area's poor performing schools who are ND is really quite significant and there also would appear to be some correlation with socio economic status in some cases. You do actually get ableism in the fact that classes are unfairly being labelled as the ADHD/ASD class when academic setting is applied and children (sometimes being cruel) will highlight this.

You do make interesting points. The reason for more diagnosis is better understanding, the consequence goes onto you next paragraph. Poorer performing schools are often in deprived areas. Currently, only 22% of autistic adults are in work in the UK. The consequence will be more ND children (hopefully) getting the help they need to get a proper education and helped into work improving social mobility so when they have their own ND children, they will not so be concentrated in deprived areas.

Tr1pleJump · 09/09/2023 09:53

Why are we surprised that a disability which hugely impacts education, relationships, handling money, mental health etc is going to be more prevalent in lower social
economic groups?🤷‍♀️Just one parent having it will impact household finances hugely let alone the impact of children who have it too. It can be hereditary.

greyflannel · 09/09/2023 10:06

This study is not about the distribution of ADHD across social classes but considers the impact of families experiencing financial difficulty or stress on the expression and severity of ADHD symptoms in children with a diagnosis. There is a small effect detected, which is described as interesting but not clinically significant.

In terms of SEN and disability more generally, we live in a country with very significant health inequalities. All sorts of long term health conditions are associated with poverty, this runs the gamut from poorer perinatal outcomes to reduced adult life expectancy. People who are the most socially and economically deprevied also receive the poorest healthcare. You are right about the complexity in how this plays out, including in terms of patterns of referral and diagnosis.

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