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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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?

OP posts:
mamainlove · 26/09/2022 00:36

5zeds · 26/09/2022 00:30

I don’t really understand why SALT are focusing on ASD at all, surely their focus should be speech and language and “appropriate play” and “masking” or highly verbal autistics aren’t really their core concern (and frankly certainly shouldn’t be sucking up the funding for people with actual speech sand language difficulties). How can it be that people who cannot communicate at all are unable to access aac and we are wittering on about “play”?

I agree. Unfortunately, it's only about ASD.

There is research coming to light. But children who's minimal verbal, or have receptive language and/or expressive language difficulties, have a co morbid language disorder on top of their ASD, deafness, learning disability etch The problem is that the child requires intense direct 1:1 speech and language therapy which services (mainly NHS) are unable to deliver.

Also, aac systems are not really well versed when studying SALT. It's more of a specialism and you require training. I undertook additional training in AAC systems but this is not the same for all SALT's.

OP posts:
BadNomad · 26/09/2022 00:37

mamainlove · 26/09/2022 00:27

Yes, but the issue is that the movement is advocating an approach for all ASD children- with co occurring conditions or not.

I think it's rich for you say... if a minimal child wants to communicate or not. Communication is a fundamental right. Period. Whatever communication methods my clients use. I will make sure that it is robust enough.

A minimal child? I don't believe anyone should be forced to communicate in ways they are not comfortable with. If your non-verbal children don't want to use apps or picture boards, then they shouldn't be forced to. Everyone communicates, it just might not be in ways that everyone understands. That is not the fault of the child.

Just look at the deaf community. Many are forced to learn to speak verbally as children so other people can understand them. Many grow up and reject this in favour of signing and socialising with others who understand and accept them as they are. The way you are talking makes it sound like you see ND as disabled, defective, needing fixed.

MangyInseam · 26/09/2022 00:42

Supersimkin2 · 25/09/2022 23:46

No one’s teaching anyone they’re ‘deficient’ FFS.

Anyone who falls for that suggestion does everyone who’s ever wanted to learn anything a huge disservice - and propagates and continues stigma.

Learning grows who you are, not crushes your soul. We’re all born ‘natural’ whether that’s ASD or not. The idea that education harms the sacred child brain is an old one, repeatedly disproved.

Children aren’t bags of flour - better for all if left unprocessed. Babies’ brains are made to grow and adapt.

Not just human brains either. Elephants don’t have rows about ableism, but they do teach calves social skills for as long as it takes. That’s real ‘natural’ in action.

There are element of this discussion that rely very heavily on the naturalistic fallacy. And then a lot of it also seems related to other trends like radical body acceptance movement.

Ultimately, if people really think that there is no deficit, there doesn't need to be services. That's not just trying to find an excuse to cut services, that's the actual logic.

I know a lot of parents, particularly of kids with more significant needs, who have simply withdrawn altogether from the wider "autism community" as it exists in things like support groups.

5zeds · 26/09/2022 00:43

i don’t think intense (yikes!) 1:1 speech therapy is necessary in all situations but it’s probably more appropriate than play/eyecontact/stim policing and behaviour modification. My ds is severely language disordered and that has been a much bigger hurdle than his ASD.

Zedcarz · 26/09/2022 00:44

mamainlove · 25/09/2022 22:54

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?

I can't find the specific post to reply to but someone asked why should neurotypical people be the ones to adapt their communication styles?
This question perfectly encapsulates our thatcherite every man for himself society.
The same attitude that shouts 'charity begins at home ' when we offer support to refugees.
One of the reasons NT people should adapt and be flexible to accommodate the needs of nd people is because your brain is not already performing 100 mental somersaults just to fit in, achieve and get through each day, therefore it's a kindness to those for whom societal norms can be harder to adhere to.
Also it teaches your children and those around you to understand difference, to ask people what they need. It broadens their vision and help not to raise another generation of people who are selfish, superficial, blissfully ignorant, arrogant and emotionally lazy.

MangyInseam · 26/09/2022 00:44

BadNomad · 26/09/2022 00:37

A minimal child? I don't believe anyone should be forced to communicate in ways they are not comfortable with. If your non-verbal children don't want to use apps or picture boards, then they shouldn't be forced to. Everyone communicates, it just might not be in ways that everyone understands. That is not the fault of the child.

Just look at the deaf community. Many are forced to learn to speak verbally as children so other people can understand them. Many grow up and reject this in favour of signing and socialising with others who understand and accept them as they are. The way you are talking makes it sound like you see ND as disabled, defective, needing fixed.

Quite a lot of deaf people actually find it useful to be able to communicate with people on a day to day basis, or even like being able to develop those friendships and think they are worthwhile.

turbonerd · 26/09/2022 00:45

And also this ableist nonsense, and why shouldn’t NT people just accept asd behaviours.
the majority of the world population is NT, the name gives it away. It is maths, whether you like it or not. The social human world is built around NT function and behaviour.
good luck with changing that.
all those high functioning verbal asd’s (likely like myself) who think some minor meltdown after too much masking one day at work is in any way comparable to the severe reactions of a child or adult who has no way of communicating their distress. That it is ableist to help them to reach through to others? When we KNOW that human connection is crucial to all humans?

It does vex me.

5zeds · 26/09/2022 00:46

I know a lot of parents, particularly of kids with more significant needs, who have simply withdrawn altogether from the wider "autism community" as it exists in things like support groups. yes me too

mamainlove · 26/09/2022 00:49

@BadNomad

What the fuckery am I reading?

Communication is a basic right. No more, no less. Sometimes, speech is not the goal, but I look into other communication modes- signing/pictures/apps/ etc. But whatever communication mode I choose, has to be robust. What I mean by robust is that the child is able to "request basic needs, make comments, shares with others, protest, negotiate". For example, if I have a child who prefer signing, I'm not going to teach or model to them 1- 2 signs, I'm going to aim for at least teaching them to sign 200 plus core words to meet those robust communication functions.

If I have a child who prefers to write, you bet I'm going to explore assistive technology systems; scribes, systems which imbed literacy and you can guarantee I will be telling schools and parents to continue to support their child's reading, spelling and writing (narrative) skills.

Regarding deafness. People in the dead community prefer signing than to speech and do not use speech and just signing. That is fine. But BSL (which deaf communities use) is a language that means that it's a language that follows its own grammatical rules and structures and therefore children/adults are able to converse in complex forms and it is very robust.... asks, a language that enables the child:adult to communicate for different functions.

Regarding you comments about deafness.

OP posts:
BadNomad · 26/09/2022 00:49

MangyInseam · 26/09/2022 00:44

Quite a lot of deaf people actually find it useful to be able to communicate with people on a day to day basis, or even like being able to develop those friendships and think they are worthwhile.

Isn't that their choice, though? They're not being forced to do it. Forcing people to communicate in ways they are not comfortable with is taking away their choice and their autonomy.

mamainlove · 26/09/2022 00:53

5zeds · 26/09/2022 00:43

i don’t think intense (yikes!) 1:1 speech therapy is necessary in all situations but it’s probably more appropriate than play/eyecontact/stim policing and behaviour modification. My ds is severely language disordered and that has been a much bigger hurdle than his ASD.

The problem now is that significant language disordered children would not make much progress unless they have 1:1 direct SLT that is specific and tailored to their language difficulties. Modifying the environment (I.e. visuals, modifying language in the classroom, differentiated work) makes a difference but it's small. The real difference is the child having access to regular 1:1 direct speech and language therapy.

OP posts:
turbonerd · 26/09/2022 00:57

Me three.
those communities seem to belong to some extraordinarily eloquent and verbose neurodivergents. They seem to reject the help and care from «NT» people whilst simultaneously demand more help and care, then decry it as ableism.

I am really angry about it today. Can’t sleep either. Thank you for posting op.

I am all for debate and constructive criticism of methods. Room for feedback and improvement. But even Temple Grandin had lots of help from NeuroTypicals to be able to utilise her genius fully - and then thrive independently in society. To acknowledge that does not take away from her Fantastic ability and incredible achievements.

SideEyeSally · 26/09/2022 01:00

I was diagnosed with ASD and ADHD as an adult and find that I cannot meaningfullly engage with most of the autism community. I am very glad I have some ability to mask. The research looking at the negative outcomes on masking focuses on the costs (tiring, draining, anxiety provoking) but not the postivies (independence, access to a wider world, broader pool of social potential, less obvious target). I think a lot of autistic people are very bitter about the costs and want the benefits without them. While that might be the ideal it doesn't work in reality and you can't control other people's behaviour only your own. Getting angry at NT people for not rebuilding society to fit your needs isn't a pathway to change.

Also I fully agree that the vocal voices in autism (though I actually suspect they are the majority not minority) for whom autism is experienced as a difference are quick to silence autistic people or the families of autistic people for whom it is an extremely debilitating disability.

Helping a child learn skills which don't come naturally to them is not the same as telling them they are deficient or defective and I find the narrative that it is petulant and worrying.

mamainlove · 26/09/2022 01:06

SideEyeSally · 26/09/2022 01:00

I was diagnosed with ASD and ADHD as an adult and find that I cannot meaningfullly engage with most of the autism community. I am very glad I have some ability to mask. The research looking at the negative outcomes on masking focuses on the costs (tiring, draining, anxiety provoking) but not the postivies (independence, access to a wider world, broader pool of social potential, less obvious target). I think a lot of autistic people are very bitter about the costs and want the benefits without them. While that might be the ideal it doesn't work in reality and you can't control other people's behaviour only your own. Getting angry at NT people for not rebuilding society to fit your needs isn't a pathway to change.

Also I fully agree that the vocal voices in autism (though I actually suspect they are the majority not minority) for whom autism is experienced as a difference are quick to silence autistic people or the families of autistic people for whom it is an extremely debilitating disability.

Helping a child learn skills which don't come naturally to them is not the same as telling them they are deficient or defective and I find the narrative that it is petulant and worrying.

This is very interesting. Thanks for sharing this. I have never thought that, as well as looking into the negatives of masking, there's no research into it's benefits. I hope you don't mind, but could I share this thought with my team? Not your post! But this thought of yours.

OP posts:
SideEyeSally · 26/09/2022 01:22

Feel free but bear in mind I am only one person. Being neurodivergent for me is like straddling two worlds. It is incredibly easy for me to go weeks days without showering, without really talking to people listening to my favourite podcasts, not dealing with life stuff and eating only processed carbohydrates. I also know that doing that for any length of time makes me depressed, I become aware I am being a bad friend/partner/daughter and guilt kicks in, I realise one afternoon that probably the people in the shop could smell me and then I feel shame.

I struggle to be 'normal' in a lot of ways but I am sure there are a lot of people out there like me who straddle both worlds and who are still affected by the 'prosocial' emotions like guilt and shame but struggle to keep up with the behavious that keep them at bay. I hate the thought of them being told they cannot have that help because it's ableist.

Someone up thread mentioned the radical body acceptance movement and there are parralells. I left those communities too because the attitude that wanting to loose weight was fatphobic, self-loathing and thst being fat was something people have no control over was so damaging to me as someone with a binge eating disorder. It made steps towards recovery seem immoral.

pompomdaisy · 26/09/2022 01:35

My next door neighbour is ND. He doesn't mix and socialise with us but we understand why. He is a programmer and earns a packet jetting all over the world. In summer he plays the most fantastic instrumental music. He is part of our neighbourhood but in his own way. Why can't society let ND people be ND?

user1477391263 · 26/09/2022 01:42

I agree with the OP's concern.

One thing that really bothers me is the trend whereby online discussions of things like autism become dominated by people with high functioning autism, who then see extremely eager to censor and avoid public discussion of low functioning autism and the immense suffering it causes to the people themselves and to parents and caregivers.

Have seen parents trying to talk online about their struggles and difficulties, and being shut down, screamed at and insulted, being accused of not accepting their child's condition in the right way, being informed that the only reason their child is suffering is because they (the parents) are failing to accommodate the child properly... and so it goes on. It's horrible.

This article here by Thomas Clement (who is autistic with a high IQ, and has a brother who is also autistic but is not capable of independent living) sort of sums up my concerns about all this.
www.theguardian.com/commentisfree/2019/aug/26/autism-neurodiversity-severe?fbclid=IwAR14AryBQWAa-6K8wvRSgJZarQWvM-NXBk_cxK6_6eIzEnIFz5geu9ww47I

Diverseopinions · 26/09/2022 01:42

I think awareness of the different neurodiverse path is good and the new trend is probably based on research, and not a whacky new trend with no empirical basis. I'm somewhat against PECS. It's basically about making your child give over a card with a picture of what they want before you will give them what you have ten minutes before being passing them freely: bubbles; a favourite sensory toy. It basically presents communication as something artificial, rather than naturally evolving.

I've sometimes wondered whether, left to evolve conversation naturally, children who experience ASD would use words to try to meet their own needs, initially, and then, over time, use language to start to talk about a special interest, like music. I don't not what is being advocated in place of PECS, but it might be a system which combines some of the 'old ways' of encouraging communication, but simply be more personalised and responsive to the child's own initiatives.

Certainly, children with ASD will make sense of things which interest them. Communication strategies which are too rigid may fail. It is not so much not being able to use language, but more wanting to use language to advance a particular interest, for a lot of ASD children. I think that strategies which are responsive to the ASD child's interests work best. There is a danger that if you force a child to try to do talking in a set way, that you will put them off education and then it takes longer to reconnect them. This is what some Speech and Language specialists cite as the danger of ABA. It probably works well as a therapy for some ASD children, but certainly not all of them, and not much good if it increases their anxiety.

You can't teach a young child with ASD that "This is orange. Say orange". If they get it at all, they might never generalise that understanding to everything orange, but think you mean that felt pen must be labelled orange. In the same way, I think that exploratory play with Montessori type sets for fitting pegs to the number of holes, obviously works better for finding out 'one more is needed' than saying "This is 3 + 2, look, say 3 + 2" , before the child has an understanding of 1:1 correspondence.

As a mother of an adult with autism, I know that you have to give freedom to express thoughts, and to do it during the childhood years, otherwise there is a danger that the individual with ASD will think that communication is a game where you say what the other person wants to hear. The impact on that on the adult, who might later in their life be looked after in some kind of official care setting, is that they won't be able to self-advocate for their own needs. They will think "What happened?" is a statement saying " I am asking you a question, can you remember what you're supposed to say?" - a kind of game again, like PECS, or those endless question and answer sessions they do in special schools, or card games which the ASD teenagers probably don't know the meaning of, nor want to win.

Quite a number of friends whose children have ASD, young adults now, like my son, say that at school, something would happen, like they would ask their son: "What is your favourite meal?" and the teenager would say: chicken pie" and the mum would say, "They never eat chicken pie". It's maybe been suggested before as an option and the person will think: "What am I supposed to say this time?". To work communication strategies gave to cover social expectations, but also evolve with the interests of the child.

SpidersAreShitheads · 26/09/2022 01:47

I'm not going to repeat a lot of views which have already been given here. All I will say is that there's a very big difference in teaching a child skills which are essential and that they can't do without, and teaching a child skills that make neurotypical people more comfortable. In my experience, most types of support or therapy focus on the latter.

There were comments earlier in this thread about teaching autistic people to have friends - some autistic people genuinely don't feel a need for this, and don't feel lonely. It's about identifying what are true, inescapable needs which should be addressed, and those things that neurotypicals think that everyone needs because they're incapable of seeing the world through a different lens.

It's useful to be able to mask, but it comes at a cost, and there's an increasing feeling of 'why should I have to?" among the autistic community. I guess some of the anger comes because it's very often not about accommodating our needs, but making us seem more acceptable to the neurotypical community. And if you compare this to other disabilities, maybe a wheelchair user, there's just not the same approach. We're not treated in the same way as physical disabilities, where accommodations are made and people understand that needs are different - and that's OK. For autistic people, it's all about making us as close to neurotypical as possible, even though that's just not the way our brain works.

There are some well-meaning parents of autistic children who push a harmful agenda unintentionally. ABA is the classic example. There's an enormous community of adults who say they were seriously damaged by ABA as a child, and yet it persists.

Being such a broad spectrum means that what's needed is an individual approach, and that takes time and money, both in short supply in our NHS provision.

For context, I have a DD and a DS who are autistic, plus I'm autistic/ADHD myself.

user1477391263 · 26/09/2022 01:47

Just look at the deaf community. Many are forced to learn to speak verbally as children so other people can understand them. Many grow up and reject this in favour of signing and socialising with others who understand and accept them as they are. The way you are talking makes it sound like you see ND as disabled, defective, needing fixed.

The correct way to do things, surely, is to bring children up with their national sign language AND teach verbal communication (speech and lip reading) in the vernacular of the country where they live, even if it's just their second language. Deaf people are as capable of bilingualism as everyone else is.

I wish BSL was taught in all schools instead of French or German, actually (because sign languages are fascinating, and useful in some practical situations, and because with aging populations it might be additionally useful for some people in old age, in addition to the accessibility for deaf people issue).

But it's rarely taught, and we don't have enough teachers to mainstream instruction.

Getting the entire population of the UK to manage BSL is not going to happen in our lifetimes. And in the meantime, Deaf people will need to communicate in these situations as well.

Diverseopinions · 26/09/2022 01:48

I get the impression OP that the new initiatives might not be so much about not giving the individual the tools to fit in, but more about making teaching and modelling strategies as effective as possible.

mamainlove · 26/09/2022 01:52

@Diverseopinions

I should be in bed but can't sleep!

I have never been too fond of PECS. The push is more towards a robust communication system- like high tec AAC's, PODD but again this requires more funding and money. However, there are some children with ASD who respond to PECS, particularly at the initiation stage.

Regarding ABA and language. In speech and language therapy, we wouldn't say to a child "This is Orange. Say Orange". We would encourage shared book reading, talk through play, modelling language, following the child's interests and so on.

OP posts:
SpidersAreShitheads · 26/09/2022 01:54

"Quite a number of friends whose children have ASD, young adults now, like my son, say that at school, something would happen, like they would ask their son: "What is your favourite meal?" and the teenager would say: chicken pie" and the mum would say, "They never eat chicken pie". It's maybe been suggested before as an option and the person will think: "What am I supposed to say this time?". To work communication strategies gave to cover social expectations, but also evolve with the interests of the child."

@Diverseopinions - this kind of thing used to happen all of the time, especially with DS and to a lesser extent, DD.

When the report from the Educational Psychologist for DD arrived, it listed her interests as including sewing, and playing guitar. DD had just come from a general music lesson in class where they were all introduced to playing guitars for the first time. She can't play guitar. We'd also done some sewing together at the weekend, which she was largely uninterested in. But asked and put on the spot, those are the two "interests" that she listed.

DS was even more bonkers. Every week they would have to write a diary on Monday morning about their weekend. DS would write about riding a bike - he can't ride a bike and has dyspraxia - same with playing football. Every week there was some kind of random activity listed. He had a "passport" thing for his class - he was in special school - and under his likes he had painting and art listed. He HATES art because again, with the dyspraxia he struggles to control pens/brushes etc. It's just about the pressure of having to list SOMETHING.

I used to have to explain to the school - repeatedly - that they couldn't take something that was said at face value because there's a very good chance it's just something to say, rather than being true. And yes, sometimes things were said which got me in trouble, and needed a swift explanation!!!

Diverseopinions · 26/09/2022 02:00

SpidersAreShitheads

Exactly!

IndianSummer78 · 26/09/2022 02:01

Exhaustedmoose · 25/09/2022 21:24

Shit that's scary OP. Really scary. 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

It's you who's scary. Mask and suffer in silence is your solution. How about accepting that some people are unfit for work due to their disabilities? And not pushing them to the point of total mental breakdown in order to prove it?

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