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AIBU?

That Neurodiversity is becoming an issue

360 replies

mamainlove · 25/09/2022 21:05

Sorry about the thread title:

I have been umming and arrring posting this thread. I'm not able to be speak about this with family/friends (due to lack of knowledge about the area) and some colleagues, as I may seem like a monster if I shared my views.

But I currently work as a speech and language therapist for NHS. The Neurdiversity trend has really changed our practice which I feel may be detrimental to our young people with ASD.

To point out. The support for neurodiverse peopje is minuscule. Children with ASD receive the least amount of provision and if you have a co-morbid conditions, even less so as it's about changing the environment and not about specialist interventions.

Currently, my team are scrapping some of the "typical" interventions that children with ASD usually receive. The idea behind this is that we shouldn't be using interventions that follow a neurotypical path.. for example, if a child with ASD likes to stim with cars, we shouldn't change this (agree) but we shouldn't model and try to teach the children functional play skills, imaginative play, turn taking, "social skills", conversations as that is neurotypical expectations.

I am happy that there is an awareness of neurodiversity but I'm worried that there's a harm in reducing services for children with ASD. A little bit frustrated with the team as it appears that we all have to conform and it's making me reconsider my career choice.

I'm not sure how I could go around this or is the problem with me?

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mamainlove · 25/09/2022 22:46

Tumbleweed101 · 25/09/2022 22:40

How would we make the world suitable for neurodivergent people? Society is set up for the way the majority of people are capable of interacting and communicating with one another. How can we support people who may have a really wide range of communicating or ability to do so in every day life?

Teaching someone to communicate in their own way is fine, but not if the rest of the world still have no idea how to communicate with that individual. Why does it fall to neurotypical people to change their way of communicating to communicate with someone who is neurodivergent? it's still one side of the two having to change for the benefit of the other.

Whether they like it or not, a minority group have to understand a majority group in some way. Many neurotypical people have interests and obsessions that they would love to pursue on a daily basis and ignore the rest of the world. Why can't a neurotypical child have the chance to indulge their interests in the way allowed to neurodivergent?

Children on both sides are being let down. Balance is needed as always. Help a child using their interests, but also push their comfort zone so they can fit into society. Everybody masks to some extent, that is being part of a society that has expectations of you against what you desire to do.

Yes. Thank you.

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Fundays12 · 25/09/2022 22:47

mamainlove · 25/09/2022 21:23

Yes, we are putting a stop to all that. If a child doesn't appear to want to have friends, we would not work on integration or playing with others.

As a mum of a child with ASD and ADHD this actually alarms me a bit. My son showed very little interest in friendships when young but through being encouraged (never forced) to play with other kids, taught social expectations and just play in general he naturally started to really enjoy friendships.

He is 10 now and has a lovely little group of friends. Some days he needs his own time and will take himself up to his room on his own to watch TV or build Lego but often he really enjoys time with his friends. Had this not been encouraged he wouldn't have realised the benefits. I think there is a fine line between encouraging and supporting a child to play and build friendships and forcing them though.

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qwertyqw · 25/09/2022 22:47

BryceQuinlanTheFirst · 25/09/2022 21:14

I'm a parent of a child who receive SLT. I am happy he won't be forced to do imaginary play and other things he has no interest in. Why does he have to? If my son saw a line of animals, he would make them into interesting patterns, he wouldn't pretend they moo or roar. Why is that way right?

I wish more SLTs would work within a child's interests. Every time I've gone to our session, they have a load of toys my son has zero interest in. I keep asking if they can provide x,y,z and they just don't. But realistically, the support is no minimal that 4 sessions twice a year which is what we get, is utterly pointless to make any meaningful impact anyway. And no time for them to get to know the child. The whole system is so so broken.

I love Meaningful Speech and Sensory SLP on instagram. They both use fantastic tactics to get engagement from autistic kids. Wish more British SLTs were like this.

can you share the instagram page? x

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mamainlove · 25/09/2022 22:47

Iamnotthe1 · 25/09/2022 22:42

Is an element of this just a hidden excuse for reducing funding and support?

Let's say that, currently, the majority of support available to children with ASD is focused on interacting in a NT environment (rightly or wrongly). Removing that as a "target" by stating that it's ableist to offer a child with ASD an intervention with that focus could be used to argue that no/few interventions are needed.

Coupling this with the statement that children with ASD cannot and should not be expected to reach the same developmental goals as NT children, a narrative could be created that a lot of the specified support in things like EHCPs is actually not required and the targets are wrong.

Following that thread through to it's conclusion, I could see Local Authorities making the argument that, if the child with ASD does not need to meet the sorts of targets set in EHCPs then some of the justifications for the EHCP (variance from peers, specific support needed, involvement from external agencies, etc.) will no longer be seen as valid because they could say that the child is: "fine as they are". Heck, the eventual end of the line conclusion could be: "It's ableist to ask children with ASD to attend mainstream schools."

This sounds to me that this is a move to reduce funded support for children with ASD hidden under the guise of equality and inclusivity.

Yes!!!!

I'm not very articulate. But yes. Precisely! This is what is happening.

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VioletInsolence · 25/09/2022 22:49

I’m autistic with two ASD sons. I’m all for embracing autism and my own eccentricity. I don’t really mask - have never been able to because my main trait has always been panic and there was no disguising it.

Now I have good social skills and cognitive empathy (always had emotional empathy) that I’ve learned over recent years (I’m 50). I’m not masking. I’m far more ridiculous at home but who isn’t? I actually think that neurotypicals mask far more than autistics.

I do think you’re right that it’s useful to teach social skills whilst also allowing autistic behaviours. I don’t know how successful it would be but as a little girl I think it would have been useful to me to some degree. I think it would have been great for someone to reassure me that I was perfect as I was (because I was so self conscious and embarrassed) but give me a few pointers about being a good friend and knowing what to say.

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Norabuzz · 25/09/2022 22:49

YES! I strongly agree with you OP. I have a son who is gifted, autistic, and has ADHD. He is struggling so much at a mainstream school. While we are working with school to be as flexible and as accommodating as they can, we are also trying to upskill our son as much as possible. He is social, loves to make friends but really struggles to make a connection. We are so worried for his future - he's bright, curious and engaged but will really struggle in the usual structure of a job. The world is changing and there are companies who are willing to be more inclusive but the world is not changing fast enough and we would love programs and strategies to help our son to thrive in the world as it really is.

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DontTouchThat · 25/09/2022 22:50

My ds was 4 when I first suspected SN. I fought for years to get him through the diagnostic process, he was 10 before he was diagnosed with ASD.

Throughout all this time I knew I was supporting him alone, the professionals weren’t interested. He had no friends, was in constant anxiety, barely ate anything. I taught him to play, to manage his sensory issues, to challenge his routines, to interact with others in an acceptable way. It was tough but I was terrified how he would cope in the world. He’s now 16, he goes to mainstream and is preparing for college. He has solid group of friends and loads of coping mechanisms, most people don’t even realise he’s autistic unless they spend a while with him.
I don’t regret trying to help my son fit in with the world. I still worry about adulthood, A LOT but I’m less worried than I thought I might be.

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mamainlove · 25/09/2022 22:50

NoYouSirName · 25/09/2022 22:42

Please don’t take this the wrong way.

But there are children with ASD who have high support needs, are not able to function at all, have no communication, who are either in prison or in institutions. My worry is mainly for these groups of children/adults not adults with ASD who can relatively function in society and have adequate communication skills to function day to day.


To be fair, you don’t know what my support needs are, or day time day functioning, those are assumptions on your part based on the fact that I can type a message and express myself here.

I spent a large proportion of my young adult life in ‘institutions’.

However, I do know that there are some autistic people with concurrent learning difficulties. Of course there are. My point still stands. Encouraging masking isn’t helpful for them either, it never could be. It’s all the more important to encourage acceptance of different ways of communicating, when someone is completely non verbal and has no voice to express what they need, surely?

You will be surprised that some of these children with ASD, who I'm talking about, do not have co current difficulties. Some of my non verbal students with ASD has above average cognitive abilities. But coupled with the lack to support earlier, and reduction to services, they have developed- what others deem, challenging behaviours and are not safe to be in the public domain.

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sunshineflowerdaisy · 25/09/2022 22:51

I'm an NHS SLT in a different field.

We don't offer therapy to ANYONE anymore. That's the NHS. Assess, advice and discharge. I'm not sure if that's what you're trying to say? I think calling the 'neurodiversity trend' the reason for it is quite insulting and I'd be wary of throwing that around as a professional.

Also - what is your evidence based for either approach? That's the backbone of any intervention.

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oddoneoutalways · 25/09/2022 22:52

NoYouSirName · 25/09/2022 21:31

They need to be taught how else are they going to learn to fit in with society and more importantly function in society and hold down a job with expected behaviours even if not natural to them? FFS

Jeez, exhaustedmoose! As an autistic adult you are so wrong. Forcing an autistic person to mask is only going to make them less able to function. I have only been able to work since I was diagnosed, stopped masking and trying to ‘fit in’, owned my neurology and have adjustments in place that make it possible for me to manage working.

Rather than forcing neurodivergent people to fit into a society that doesn’t cater for them we should be working on accommodating neurodivergent people in society and normalising neurodivergent ways of communicating.

There is a lot of ableist assumption in the OP. ‘Functional play skills’ - functional for whom? Fulfilling what function? ‘Neurodivergent trend’ - no, it’s an improved recognition leading to an increase in diagnosis.

As a parent of neurodivergent children I am glad this is changing and that they won’t be subjected to ‘interventions’ that don’t respect their neurology.

This, this and this again.

It needs shouting so that those at the back can hear it too.

From another autistic adult (with ADHD too, so double neurodivergence) who wasn't diagnosed until age 37.

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mamainlove · 25/09/2022 22:54

NoYouSirName · 25/09/2022 22:42

Please don’t take this the wrong way.

But there are children with ASD who have high support needs, are not able to function at all, have no communication, who are either in prison or in institutions. My worry is mainly for these groups of children/adults not adults with ASD who can relatively function in society and have adequate communication skills to function day to day.


To be fair, you don’t know what my support needs are, or day time day functioning, those are assumptions on your part based on the fact that I can type a message and express myself here.

I spent a large proportion of my young adult life in ‘institutions’.

However, I do know that there are some autistic people with concurrent learning difficulties. Of course there are. My point still stands. Encouraging masking isn’t helpful for them either, it never could be. It’s all the more important to encourage acceptance of different ways of communicating, when someone is completely non verbal and has no voice to express what they need, surely?

No one is saying that we should be encouraging masking. I never said this in my post. I've said it's important to teach ASD children skills.

The issue comes with seeing ASD being a difference vs a disability. If I had a student who has cerebral palsy and I took him/here to physiotherapy in the hope that he/she can walk or gain enough function in her limbs in order to navigate safely- is that ableist?

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Chrissmasjammies · 25/09/2022 22:57

@sunshineflowerdaisy that’s shocking - how does your trust justify that, it’s such a fundamental part of what an SLT does. What about the evidence base for that? What about duty of care? Regulatory requirements, keeping up knowledge and skills etc. it must be such a difficult way to work and very stressful for staff. I’m a publicly employed SLT and although our levels of service are very low that’s another level.

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mamainlove · 25/09/2022 22:59

Onceuponatimethen · 25/09/2022 22:43

Some of what you say sounds good - I don’t think there is any point aiming to teach imaginative play to dc like my dc who have very HFA but will never play imaginatively. And in my view that’s fine - we need to be less impairment focus and value not belittle any different skills.

But I do have real concerns about the friendship stuff and there I agree with you. My dc honestly very weak in this at 3-6 but now has friends after years and years of SALT and support at home. Friendship makes them so happy which they say themselves. So risky to extrapolate lifelong preference not to socialise from youthful difficulty with the social rules.

Yes.

I had an SLT colleague say to me "well if I see an Autistic child by themselves and they are happy, I won't teach them turn-taking, friendship skills, he is happy on his own".

I then turned around and said "Well I had a similar scenario, I too saw an ASD child, who was playing by himself and seem content, happy actually. When we did our 1:1 session I asked him "Z, you seemed liked you enjoyed yourself in the playground". He replied to me and said "Did I? No I didn't. I didn't have no one to play with. I want to have friends but I don't know how". I then further added and said to my colleague "well... I was lucky he was able to verbalise this to me how much more for children who are not able to do this or communicate this effectively".

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Supersimkin2 · 25/09/2022 23:00

So you’re saying that ASD DC are at risk of not getting SLT because:

a) stakeholders say reducing ASD behaviours via this text therapy is disablist and wrong
b) the NHS is using the discrimination argument to reduce therapy and save money
c) even though ASD DC, who already get precious little therapy, may benefit from
the therapy even if they risk being seen or judged as neurotypical as a result.

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mamainlove · 25/09/2022 23:01

FamSender · 25/09/2022 22:43

It is interesting to me that this is such a battle.

SLTs trying to make sure they are giving the right support to all the autistic children and families they work with, based on current research and feedback.

Autistic adults.and parents of autistic children trying to make sure the right intervention is delivered to autistix individuals.

Aren't you all pulling in the same direction?

Yes, vocabulary used might not be 100% perfect all the time, but isn't it better to focus togehther on what will work that pick apart the language of the debate?

Not if there is a risk to access of services and funding for these individuals. Then language really does matter,

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Xmasbaby11 · 25/09/2022 23:01

My DD 10 has ASD and benefits from help with her communication skills. She needs to know how conversations work, not just in the big wide world but at home, with her family, in the classroom, in social situations. You can't avoid dealing with people. Even for children who aren't bothered about friendships, they should aim for basic communication skills. DD struggles with things like:

turntaking (she will speak over everyone)
asking questions, following up (just talks about herself, doesn't know how to show interest)
intonation (angry, polite, enquiring)
facial expressions
non literal language
polite language

She is receptive to being taught explicitly about these by us and activities set up at school. She's very sociable and is desperate to have friends, so these skills are important. She still doesn't follow the rules all the time and forgets when she is emotional or tired, but she is getting there and able to communicate better with her peers. Of course they try to be tolerant when they know (eg her classmates) she has ASD but they would still misunderstand her or be put off working with her, being friends with her.

And yes, other social rules like don't hug people unless they are ok with it, don't take food off people's plates.

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TrainspottingWelsh · 25/09/2022 23:01

@Tumbleweed101

The nd, or natural, instinctive part of my brain makes me want to just reply with a less polite version of shut up.
However I understand the acceptable nt response would be to explain why you’re wrong in flowery terms and adhere to rules about how to offer constructive criticism and educate etc.
Instead I’m already compromising by attempting to illustrate we often already modify our behaviour without people like you ever realising.
I don’t expect you to understand, nor on a personal level do I care what you think. However in return for the compromises nd people make everyday, it would be great if you could meet us halfway and try, at least in public to mask your ignorance and contain your natural urge to share your uninformed opinions.

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FamSender · 25/09/2022 23:02

What is the evidence base for new neurodiverse appropriate therapy approaches for children?

Are any old interventions "ND approved"?

Or is all intervention based on a medical model and therefore not warranted, and we should look to social/environmental changes? Is there research on this?

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Supersimkin2 · 25/09/2022 23:05

Under argument B) you can put every illness and injury covered by the DDA. So, er, why would an NHS exist if treating say, cancer or MS is discriminatory?

‘It’s not a brain tumour, it’s a difference.

‘Go home.’

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PyongyangKipperbang · 25/09/2022 23:05

I get it. Oddly, my son does in fact have Cerebal Palsy and never has it crossed my mind that helping him to live independently would be considered ableist!

Its the mind set of "some people cant, so no one else should" that is worrying. Some people can learn certain skills, others can't, but they should all be offered the opportunity to try and if, as you said, its not their thing, then ok and move on to other things that do suit them. Sometimes people can surprise you! I was told 30 years ago that my son would never walk, unlikely talk and need care 24/7 for the rest of his life. Shortly before he took himself to (his own) home today we had a chat about the business he is starting. So........

Offering everyone the same opprtunity to learn a skill is not ableist, its the absolute opposite!

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mamainlove · 25/09/2022 23:08

sunshineflowerdaisy · 25/09/2022 22:51

I'm an NHS SLT in a different field.

We don't offer therapy to ANYONE anymore. That's the NHS. Assess, advice and discharge. I'm not sure if that's what you're trying to say? I think calling the 'neurodiversity trend' the reason for it is quite insulting and I'd be wary of throwing that around as a professional.

Also - what is your evidence based for either approach? That's the backbone of any intervention.

Well that's the problem. Assess and diagnose, asses and diagnose and then what? No support, no therapy, nothing for parents on how to support their children with ASD. No one is challenging our service provision. That's the problem. We just accept it as it is.

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SheldontheWonderSchlong · 25/09/2022 23:09

TrainspottingWelsh · 25/09/2022 23:01

@Tumbleweed101

The nd, or natural, instinctive part of my brain makes me want to just reply with a less polite version of shut up.
However I understand the acceptable nt response would be to explain why you’re wrong in flowery terms and adhere to rules about how to offer constructive criticism and educate etc.
Instead I’m already compromising by attempting to illustrate we often already modify our behaviour without people like you ever realising.
I don’t expect you to understand, nor on a personal level do I care what you think. However in return for the compromises nd people make everyday, it would be great if you could meet us halfway and try, at least in public to mask your ignorance and contain your natural urge to share your uninformed opinions.

Agreed. Plus the whole 'NT people mask too y'know' is so ignorant. It is not comparable at all imo.

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FamSender · 25/09/2022 23:14

How do you know?

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PizzaFunghi · 25/09/2022 23:15

My understanding of what the OP might have meant by "neurodiversity trend" was the greatly increased tendency lately for neurodiversity to be accepted and embraced by various people with the conditions (diagnosed or self-identified), particularly online - almost a 'reclaiming' of the words, a feeling of 'finding your tribe', understanding your differences, accepting them, not masking etc. - lots of positive aspects to it, people much more willing to share their conditions publicly, and so on.

Although this might be connected to the increased awareness and diagnosis of ASD, it feels like a slightly separate thing - it's more of a positive movement surrounding the conditions, not just the fact of increased awareness and diagnosis.

And I can see what the OP means that in some cases, this could lead to reduction in services. While many ND people might agree that they are divergent not disordered, and in no need of any sort of therapy to change the way the communicate or interact, there are others who do want or need this, either because they are distressed at not being able to interact as NT people do, or because they need some basic level of 'fitting in' in order to be able to advocate for themselves for safeguarding or generally surviving in a society that is the way it is. And it is hard to determine where the balance is between teaching some of these skills, even if they are not needed or wanted at that point. And particularly hard when you are talking about a young child, where you don't know whether they want friends or want to be able to speak in class or go to a shop or order a meal. I think there is a danger of the mood shifting to "if you just accept neurodiversity, then they don't need any SLT", and all services end up withdrawn. I may have spent much of my childhood masking, and I don't think I was taught well in some aspects, being dropped in the deep end and forced to do things until I showed no anxiety on the outside, but at the same time, they are skills I needed and have enabled me to do things that have made my life much better, so if I'd just been left as I was, that would not have served me well. I'd rather be taught how I was making and why and how to cope with its effects, and how to do it better and less stressfully. I'd have preferred a gentler way of teaching that went at my pace. But I would not have wanted to be told I was fine as I was, and that the world should adapt to whatever way I wanted to communicate.

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mamainlove · 25/09/2022 23:15

FamSender · 25/09/2022 23:02

What is the evidence base for new neurodiverse appropriate therapy approaches for children?

Are any old interventions "ND approved"?

Or is all intervention based on a medical model and therefore not warranted, and we should look to social/environmental changes? Is there research on this?

The research is very new. In terms of interventions/ not much, research is just looking into the whole neurodiversity and how this presents in ASD (again!). That's the problem, academic scholars have done tons of research on the ethology of Autism, how it manifests, what it looks like etc etc and little research into quality of life, interventions etc.

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