That Neurodiversity is becoming an issue

[mamainlove]

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?

I completely agree with you OP - I think that the services are being led blindly by the neurodiversity movement which is whitewashing autism into being I just a difference and any intervention at all is labelled ‘being made to be neurotypical’.

It’s actually very scary as in reality it means many, many children with serious functional and language communication difficulties are just being sidelined, ignored and failed by everyone.

I got told by my son’s SLT recently that his communication difficulties ‘were just his autism’ and that he ‘might prefer’ not to communicate. So she is offering him nothing.

How dare other people assume that my son is ‘masking’ by not being able to talk or to understand language - and that to help him is ‘neurotypical expectations’. This is what the situation is now. They are just going to let him go and rot somewhere unable to communicate at all - it’s something that is so backward, so appalling, so against support for children with disabilities - because my son does have a disability - recognised in law - with this kind of damaging rhetoric.

Of course we shouldn’t be stressing any child - there are ways of supporting my son with language to enable him to communicate on his terms, in the way that he wants, in a way that gives him access and opportunities like any other person. But leaving my son to go through life without language - how bloody stressful is that going to be for him?

Thankfully I’ve ignored most of the privileged nonsense from mainly people who have the language themselves - somehow ‘speaking’ for those who do not… and have helped my son develop his language myself and he has so many more opportunties for it, he’s happier and more in control of his life - because he can actually ask for what he wants and understand others. But I meet people every day whose kids still don’t have that. Shame on us for letting these kids down.

I think that the services are being led blindly by the neurodiversity movement

I think this is naive. They're not being led blindly, they're allowing themselves to be "led" with their eyes wide open, specifically towards particular ideas from neurodiversity activists which will allow the services to cut costs.

The moment neurodiversity activists are asking only for things that will be more expensive than the status quo, the interest in community engagement with the neurodiversity movement will evaporate.

See the example I gave above about the recovery movement — if services can use certain ideas originating in activism as an excuse for reducing services and cost-cutting, they will, and they'll claim it's a good thing because it proves they're responsive to wishes of the populations they claim to serve.

I agree there is so little by way of service for children and its even worse for adults. My 21yo DD is likely to be ASD and maybe even ADHD based on our assessments (my DS is diagnosed ASD), but no way can we get her assessed via nhs and noone accepts private diagnosis. Ridiculous when once diagnosed I'll know how to help her.

As everyone will appreciate, there's always been neurodiversity, but now we're aware of it more and hence can offer support. Some scientists believe it is an evolution presumably due to the continuing exponential understanding of IT and AI.

This is the post I mean.

It's a similar tactic.

Of all the people who have been under your service in the past, a subset have experienced damaging care. They may also come together with others who may not have had all the original sub-group's experiences, but who are interested in the ideas.Together they begin reject the mainstream consensus about their treatment, and start to develop alternative ideas about the best way to conceptualise the issue. This also includes a rejection of some of the more expensive things your service provides, often because they're coercive.

So you have a perfect excuse to do away with providing these treatments and services even on an optional basis, and can point to these activists as the reason (without providing any of the other things they ask for, if those are in your power). You don't have to do anything difficult like changing the way you provide services or changing the exact nature of the services offered, just stop bothering, and if anyone gets upset they'll blame the campaigners and activists and ex-patients, not the service. After all, the service was only responding to community activism…

I've skipped from page 2 so apologies if I've missed something but I hate this 'how about the world changes", yeah it would be great if it did but until then what?

A family member of dhs with asd was taught by his shrink to parrot 'I don't feel comfortable with that' to anything he didn't want to do because the world should change to accommodate him. So at 16 he didn't feel comfortable at his school anymore and left. He didn't feel comfortable doing anymore education anywhere else. He didn't feel comfortable finding a job. He hasn't felt comfortable doing anything but sitting in front of a computer screen for about 6 years now. A smart person with lots to offer but given no support at all because the world should change for him. So he sits in his room waiting for the world to change.

My ds a teenager with asd. Develops anxiety, we take him to cahms. No help for him. The world needs to change for ds apparently. He doesn't need coping mechanisms so he can achieve his dreams of going to university to study languages and eventually move to Germany, he has to hope the world changes in the next 3 years. A smart top of the class student fluent in 3 languages at 15 who is desperate to go to uni, desperate to just be able to go to town with his mates without being crippled by anxiety gets no help because he has to wait for the entire world to change for him first before he can do these things.

I get help for my GAD. Not ds though because people like you are advocating for a sit around and wait for the world to change for you while life passes you by.

Fortunately we could afford private care for ds and he spent the summer going out with his mates. He is still doing great in school and he has learned what works for him and what doesn't. He is autistic not thick. He can and has learnt coping mechanisms that mean with continued help he will hopefully be able to fulfill his dreams and not end up shut away from the world because sometimes he feels uncomfortable.

In short:

If mental health services can bastardise and selectively understand the recovery movement in order to refuse healthcare to the mentally ill, claiming it's for the benefit of patients and is what they asked for

then:

the same thing can happen in services for children with neurodevelopmental disability, using a bastardisation and selective understanding of the neurodiversity movement.

Yes, a small number of autistic adults might advocate for the abolition of any and all therapies aimed at helping autistic children adapt to the world, just as a small number of people with mental illnesses might advocate for the abolition of all psychiatric treatment. But I am confident that they are the minority, and that the majority of autistic advocates (perhaps excluding the self-diagnosed assessment-refusers who insist it's a difference, not a disability) aren't so extreme.

We fall into a trap if we allow services to get away with cutting costs and then saying "look over there, not our fault".

Surely the benefit of a diagnosis is to access support, treatment or interventions? Leaving people to get on with it as they are sounds like a backwards step to me.

ADHD/ASD person married to ASD person here with young baby who is highly likely to be ND. Fully agree with you. There is a difference between owning your neurology and individuality vs massively lacking the skills that would make other people want to be around you. Eventually all these children will grow up and have to function in society.

Neither I nor DH were diagnosed as children and the opportunities we have lost due to our poor social and executive function are incalculable. We eventually learned by trial and error but how I wish I had had explicit instruction and training when I was younger. Of course there are positive and negative ways to do this, of course punishment and criticism are wrong, of course children shouldn’t be told to stop stimming etc.

I am ambitious and I want access to everything society has to offer. To do that I accept I need to explicitly address the areas where I lack the standard wiring. I want my kid to be proud of who he is and to be able to own it, but ideally he will also be able to code switch (“mask”) when needed. NTs also have to do this, albeit usually with less cost and pain. But we play the hand we’re dealt, and not giving kids access to every tool we can is not helpful or respectful to them.

So do you mean they are reducing the services you have to offer for ASD children rather than replacing those services with other useful and more appropriate services. So really, the children are being offered less rather than an alternative?

As an SLP and mum to an almost 5 year old girl with a mild learning disability OP you are right. When she was very small, and missed all her communication milestones we took her for assessment and got an initial diagnosis of ASD. Then earlier this year after further cognitive assessment she got a diagnosis of mild learning disability which to be honest seemed a much better match to her needs. I believe that’s her primary diagnosis. Over the 20 years or so I have been working I have seen diagnoses of ASD increase exponentially while we hardly ever now see a diagnosis of general learning disability. School classes for children with mild learning disabilities were closed and now everyone is under the umbrella of ASD. I believe there is a point where it’s best to call a spade a spade as they say, and describe a child in accordance with their primary need - learning disability. There are of course those with severe language disorders associated with ASD without cognitive impairment but in my experience (limited I do admit as I have not worked much in disability) they are clinically rarer. It’s exactly as you say. There is a huge trend and vested interest in putting everyone in under the one ASD umbrella. Thank you for starting this debate. It does these children no favours to be cohorted with those without co occurring difficulties. She has benefited so much from constant use of Hanen type strategies at home, reduced language, child led play, modelling turn taking and how to initiate a conversation, and I did introduce her to AAC also via an iPad app, which she took to fairly immediately, and recognised it as something she could communicate with. We are in Ireland and services are a mess, non existent, there is no statutory framework. Thank you for giving your perspective.

This is a fantastic comment.

There is so much to unpick in this conversation, but I’ll try.

Firstly, to operate as a society, everyone has to learn to meet somewhere in the middle. NT children also have to learn difficult skills and suppress certain desires in order to get along with others and operate in this world.

We must get better at accepting differences and accommodating the needs of others. However, I know many children who are ND who have impulses and desires which disrupts the rights and needs of others. I know ND children who hit and bite others through their frustration at not being able to communicate effectively. I have met NT children who believe they must put up with being hit and bitten because they understand their peer is ND and have been taught that they must accommodate them. That is not ok either.

Assuming ND children cannot, or will not, achieve a particular skill is doing them a massive disservice. Every ND child is different and will want to engage with the world in their own way. A child should not be forced to endure learning something that actively upsets them, but taking away opportunities to learn skills that will help them to interact with others is doing them a massive disservice.

The issue is as a society we have this perception of normal that we expect everyone to be. There's little allowance within that. So rather than accepting people as they are we expect them to change to make us feel more comfortable. Any service that leans away from this gets my vote. With regard to salt my ds had salt involvement for four years. He learnt language through his interests - reading, talking about favourite characters, playing I spy and posting games. There was no imagination games which he wouldn't have been interested in anyway. He mostly enjoyed sessions (unless he really wasn't in the mood)

@Choopi Exactly - nailed it. Same with my (adult) child with ASD plus a trove of other letters. What is being advocated here would have meant they would not have been able to attend school let alone have done well. It would have meant no uni for them. It would have meant they were sitting at home rotting away versus being in a job well suited to them and where they are happy and feel good about using their skills.

In short, if you listen to the ‘no need for anyone neurodiverse to do anything that doesn’t fit them and it’s up to the rest of the world to accomodate them’, then they are seriously fucked as the rest of the world is not going to change. That’s reality.

Completely agree with this, excellent comments

@Chrissmasjammies how does our trust justify what? Lack of therapy? They don't justify it - we have very minimal funding and staffing and can offer offer what we offer and they are happy with that and refuse all business cases 🤷‍♀️. Are you in the NHS / U.K. as it's quite common across the NHS!

My dd is autistic and gets barely any support from SLT. A few sessions a year. It’s not hugely meaningful as it’s all based around what a neurotypical person needs. Considering the amount of children who are neurodiverse you’d think there would be things in place but unsurprisingly another area where children with disabilities are failed.

What would you think if a 30 year old man came up and hugged your house every day for 15 minutes?

Autistic children become autistic adults and their behaviours aren't so "cute" or "quirky" anymore - why wouldn't you take the time to teach them what's appropriate and what isn't, where possible, and support their sensory needs at the same time?

My autistic DD has private SALT funded through her EHCP as the NHS provision is so poor. Her therapist is wonderful and follows DD's lead. She also has a speech disorder, the NHS gave up on her when they couldn't support her speech disorder the 'usual' way due to her autism. She had 2 sessions in 3 years 😡

This brings us right back to the situation only 30 years ago when parents were fighting the state to recognise that autistic children were entitled to any education at all.

I think you're coming from a good place of worrying about how ND kids might cope in school or later in life if they don't learn some of these more 'NT', for want of a better term, behaviours? I see what you mean. As a mum of two ND son's I think this to an extent sometimes but tbh I think the situation is very specific to the individual and to their ND and ND comorbidities.

I read your post as highlighting the lack of funding in neurodiversity which means there's not enough individual consideration and only one broad brush strategy being attempted which of course will always fail somebody.

Firstly it's autistic child not a child with autism, it's not an accessory like a handbag.
What you're discussing to me sounds like ABA approaches 🙄
So you think we should be trained like robots to "fit" into societal norms!

But potentially worse if the state can say it's being done under the guise of anti-discrimination and is the end result of messages that originated within ASD activism groups.

There's an easy narrative here that could be created around releasing children with ASD from the shackles of mainstream education and giving them to space to just be who they are, embrace their diversity and never live with the weighty, discriminatory expectations of NT conformity again. The message would be easy to agree with: the reality would be very different.

I have autism, I have a child with autism, we are both 'high-functioning'.

Completely share your concerns OP. In particular it sounds like your team are following some half-baked ideological idea about 'celebrating diversity' rather than thinking about what would be best for the individual child.

My child WANTS to have friends and play with other children, but things like turn-taking and backwards-and-forwards conversations don't come naturally to her. With some practice, support and encouragement, she has some really good friendships now. If we hadn't helped her develop these skills she would not have friendships - you can't build a meaningful friendship if you are shouting over the other child constantly.

Sometimes she is feeling overwhelmed/ exhausted and needs some time to herself without the demands of interacting with others. That's where being supporting of her differences helps her - recognising that her autism means she can get overwhelmed at times, and knowing what will help her. Previously she couldn't recognise this feeling, and would end up screaming/ hitting/ throwing toys. We've helped her recognise this feeling, and now she tends to notice it early and either take herself off for some time alone, or tell us or her teacher that she is feeling overwhelmed and needs some time alone.

I wouldn't want to force a child to play with others if they really didn't want to, but it is very very helpful for that child to be able to communicate their needs and wants as much as possible. The best way to help them achieve that may involve some trial and error of different communication strategies.

I fear the new direction your team is taking may be an opportunity for the services offered to be cut and save money, in the name of 'celebrating diversity'.

I have autism and that brings me strengths, but my difficulty in holding a conversation is not one of them. Learning to wait for someone else to finish talking before interrupting has improved my life hugely.

If you get diagnosed as an adult, this is exactly what they do. We should have "adapted" by now, therefore, not worthy of support. And social services in my experience, are totally clueless. Them being clueless has led them to label me as "awkward". Yes, I'm awkward because I don't like loud noise or crowds.

Well the finance model of sen education and white paper all want to move away from special.schools and ehcps.

I think the idea that the NT world is going to willingly bend to accommodate every ND and be able to provide enough care to do so isn't going to materialise. We get direct payments for respite but I can't find anyone who wants to do it. I'm not convinced that the same wages will suddenly be appealing once he hits 18.

This is the problem.with going with looking at the diagnosis and not the need. But people who don't belive in speech therapy I think the option will soon be gone anyway.