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?

@Changingnames20 do you really think if the "ND movement" collectively said we "all autistic children should receive one-to-one therapy support for the first 10 years of their lives" that would happen? Of course it wouldn't. That would cost money. Doesn't matter that it would help tens of thousands of children. It's about money. The ND movement doesn't have any more power over this than parents do. The bottom line is cost. Not people.

@BadNomad The neurodiversity movement is actively attacking many forms of therapies, with very little to back this up except a lot of frenzied ‘it’s making them neurotypical’. That they are now attacking even speech therapy shows how extreme it has got. Professionals and researchers are now more concerned about appeasing the ideology than the child sat right in front of them.

…and neurodiversity it is doing nothing to support parents who are fighting even for the therapies that are ‘acceptable’ (which is less and less because there is now less research into what helps - neurodiversity is clamping down on anything that isn’t wholly positive and affirming).

The neurodiversity movement is also actively encouraging such a broad definition of autism that self diagnosed people are welcomed, and diagnostic criteria have been subjected to fierce criticism and so the diagnosis itself means less and less for people like my son. It has a direct impact. There is also less ‘room’ as there are now lots of people who would never have been diagnosed - and if they were it would be recognised that they had a very different presentation in Asperger’s. If you think these are similar you really haven’t met many ‘classic’ autistic people.

So on at least 4 counts the neurodiversity movement is actively restricting the tiny pool of services that did exist - and giving them the excuse not to do those that did.

At least before the neurodiversity ideology there was space for parents like me to unite, to fight for better services, and for people to understand.

So I am someone who is really quite angry at the neurodiversity movement and the negative impact it is having for my son. It’s very real and tangible.

It’s a great shame as if the movement had put those most severe in the forefront and actually really listened to them and their parents, and were humble enough to admit that no, not everyone is the same, and yes some kids really are more severe. And that the diagnosis is meant to reflect a degree of severity and difficulties with functioning and therefore access effective support. But however this isn’t about classic autism at all or my son at all. Sadly.

I watched The Reason I Jump yesterday which really shows how much non speaking autistic people are underestimated. They said that now lack of language is being treated as a motor issue rather than a lack of cognition. Sorry if this has already been covered. Haven't RTFT.

I think most NT people just have a different view of what autism is. It seems like you think "classic" autism is the only true autism and the rest are just autism-lite. Diet autism. Autism zero. It is all still autism, whether you like it or not. Our brains are different to NT brains.

My brother is autistic with a moderate learning disability, he will never live independently. I'm autistic with ADHD, I am his carer. My mother was autistic with nothing else (that we're aware of). You can be autistic and have other conditions that other autistic people don't have. But you know what we all have in common? Autism. Not learning disability. Not learning difficulties. Not dyspraxia. Autism. People are not less autistic because they do not have a learning disability. The learning disability means your son will have needs that I won't have. Equally, my ADHD means I have needs that your son might not have (unless he has ADHD then excuse me I missed that).

My friend has ADHD, but no autism, and although we have a lot of similarities, my issues are different because of my autism. But we both still have ADHD. I was never treated for my ADHD growing up and that really fucked up my life, so I do have sympathy for your son being let down because of the lack of support for his LD. But it really isn't an autism/ND issue that people's needs aren't being met. Your son is being dismissed because he is autistic, and so no one is addressing his LD needs. That is where your fight is. The same with every other co-existing condition. Autistic people with ADHD still need to have their ADHD addressed. It doesn't get absorbed by an ASD diagnosis. It does people no favours to lump their specific needs in with their autism.

I don't really agree with people self-identifying as autistic because that is open to exploitation. But it is understandable when the waiting list for assessment is 5 years. There is a lot wrong in this world. But autistic people are not your enemy.

I have a different perception of what's happening @Changingnames20, and I realise that for some reason the way I'm explaining my point of view on this topic is not persuasive.

Yes, it must be frustrating to see a vocal group of autistic people with less obvious difficulties advocating for conceptual changes and service changes that, if widely adopted, would not adequately serve others with higher levels of need for support. I think some of the ideas of the neurodiversity movement are well-meaning but short-sighted, some of them helpful to some and unhelpful to others, some too extreme and absolutist, some reflective of particular types of experience. And some of those ideas can, if selected carefully, be used as justification to reduce or remove services for people who really need them.

But if those advocates all blinked out of existence tomorrow, services for children who cannot yet communicate effectively would still be cut. A different excuse would be found, but they would be cut.

If the people that were getting heard were a different group, advocating for a totally different set of things, the powers that be would just find something in those ideas to justify cuts instead.

If, though, we had a government and health/developmental/social/educational services determined to invest in autistic people — all of them — and to find the best ways to provide the support they needed to develop to their fullest potential and lead the best possible lives, and the support their families need, then those services could equally well look to the neurodiversity movement for things that would augment, enrich and improve services for autistic people whatever their support needs.

I don't think the problem here is some autistic people and their ideas.

I think the problem is a lack of will to fund services, and the neurodiversity movement is just being used as a handy justification to cut services while appearing to be inclusive and responsive to "the community".

So they get away with it again, blame is efficiently directed in a convenient direction, and the rift between different groups of people with links to autism grows even bigger.

I get frustrated by a lot of the neurodiversity orthodoxy as well… but they would be pretty much powerless to effect change if they were asking for things that cost more money. They're listened to when it saves money to listen to them.

So look to the decision-makers, what things they choose to listen to and what they choose to do, first. A corrupt or evil leader will pick the advisers that are useful to him. Knock out the advisers, he'll just get different ones and find something useful in them instead. He won't start behaving any better.

I am the parent of a neurodiverse child.

This thread is important. It is painting a picture that is barely or rarely seen.

It has made me think ‘yes that’s true’ and ‘it’s a relief to know I’m not the only person who worries about that’ and ‘I’m not sure about that idea, oh I see that’s what they mean, that’s an important point’.

Every post I have read reveals someone who has really suffered.

Fundamentally it is about justice and about who is valued.

5zeds

Actually i do see autistics in my spaces. I have have a lot of contact with all areas of the autistic community, including non verbal and complex needs.
And actually encouraging not using ear defenders still happens too frequently.

Is there enough support for any individuals, absolutely not. The current support is terrible but thar doesnt mean we should be not questioning and speaking up about inappropriate types of support.

@BadNomad

Very well explained.

It is very fruatrated when both NT and ND children are not getting support they need. SALT is being cut and reduced left right and centre and has been happening for years.

So examples on this thread of trying to separate LD and autism in people with comorbid conditions, or minimise their LD.

30% of people with LD have autism - this isn't a missed diagnosis where they are really actually highly intelligent. They actually do have LD. Nor can you separate and treat the two separately. Look at LD through an autistic lens? What about looking at autism through a LD lens? Where comorbid ND conditions exist they exist within a single person and they interact. They are not separate conditions but different aspects of the whole. And that person needs treating as a whole.

@BadNomad Btw us "HF autistics" aren't naturally "HF". Our ability to interact with the world is something we have learned from being shat on by the world. I think you are talking about a different definition of HF to me. In my posts when I talk about HFA I am talking about autistic individuals who had delayed/disordered language and IQs in the normal to above normal range. The autistics you are describing I don’t think are the same population.

Have name changed for this as my colleagues and I seek out social media posts like this….

As a neurodiverse salt this is an issue very close to my heart.

My feeling is it’s all about balance. We’ve overused PECS for years and I’m not convinced it leads to real functional communication and it can be distressing for certain children (due to the withholding items). Therefore where I can see an alternative is going to work (eg core boards) I’ll choose to introduce that over pecs.

having said that pecs still has its place in my practise and I’m glad that my trust allows me to use to clinical judgement and use it with children where it will still be useful. I will also be using my clinical judgement to stop using pecs with those children if they don’t make progress or are upset by it.

The same goes for intensive interaction and attention autism. I will continue to use these where they don’t cause distress for the child. Not only to benefit the child themselves but also to ensure they are experiencing fun play and learning experiences that are autism friendly and allow the adults who work with them to build positive relationships with them. I so often go into classrooms where ASD children aren’t experiencing the positives of school because adults have no idea how to engage with them at their level.

OP’s comment about not using visual timetables has confided me. Visuals are there to add much needed structure reduce the anxiety of not knowing what’s coming next rather than to try and force a child into doing anything.

The only things that are a down right now for me are things like targeting eye contact, not talking about special interests at all or things like imaginative play where the child is not (and possibly never will be) developmentally ready for it.

I really hope it’s possible to be a neurodivergent affirming speech therapist without being rigid on what tools we use or don’t use. It’s about finding what’s best for each child, family and educational setting.

@Neurodiversespeechies

Yes, this is good explanation.
The rewarding eye contact i see so often and it really doesnt sit right.

It is also important to remember neurodivergent doesn't just mean autism. Neurodivergent includes:
Dyslexia, dyspraxia, dyscalculia, autism, add, adhd, fasd, cerebral palsy, epilepsy, learning disability, high IQ, stroke, dementia, aquire brain injury, schizophrenia, BPD, genetic syndromes, attachment disorder. It could also be said to include depression or left-handedness.

Why cant we strive for a society that makes small changes that benefit others. It really doesnt harm NT to have ear defenders in the classroom, or to have a child ricking in school. Does it really matter if Bob doesnt make eye contact with sam?

I have a teenage autistic son. His experience of Therapy is not the same as those older then him. He has never been encouraged in any setting to make eye contact, he need for movement has been accommodated in such a way not to disturb his class mates, kids who need ear defenders use them.

He has needed help along the way with communication and social skills. He struggles to make friends but really likes having friends. I think it’s wrong to decide for pre verbal or non verbal kids that actually they have a communication difference and not recognise it as a disability so that therapy isn’t warranted for that child.

You said everything I wanted to say .

Thank you

*I find it frustrating that Autistic Adults want to disconnect away from people who have Autism and a co-morbid condition (I.e: they are not purely Autistic and it's their LD causing issues).

I've said before on this thread and I'll say it again you can have a minimal verbal child/adult who has non verbal average intelligence and thus the ASD is the primarily reason.

Also, most tests are not equipped to capture the true intelligence of children/adults who are minimally verbal hence why a huge number of children with ASD (who are minimally verbal) are just diagnosed as having LD's without a thorough assessment of their true intelligence.*

I don’t want to disconnect myself from non verbal autistic adults. I’ve found this thread really interesting as well as having my brain totally fried by it, trying to understand and assimilate all the different perspectives.

So you feel that the non-verbal aspect is a direct result of autism, rather than a co-morbid language disorder?

One of my children (likely autistic, no formal diagnosis) has situational mutism. She is non verbal outside the home. Her speech is normal with us at home. I have considered that to be comorbid anxiety rather than a result of autism… but I’m open to changing my understanding.

NHS SALT wouldn’t see my child at all. Said it was anxiety related rather than functional speech and that it was a Camhs issue. She saw a private SALT who introduced a small steps programme, which did help her. I’m glad she could access that. Her own goal is to attend mainstream school even though we are happy for her not to and even wonder whether it’s in her interests. She wants to become a doctor and I hope she can. Academically she is able. She will need to be able to speak to people to do that. There are only so many adjustments that can be made… she will at least need a way of communicating with patients.

My understanding of my own neurodivergence has changed massively in the five years since my first diagnosis of autism (followed later by adhd). It will no doubt evolve and change further.

I don’t consider myself better placed to speak for non verbal autistic people than their own parents. I do have autism in common with them even though their support needs aren’t all the same. We will have things in common. If any of my children were completely non verbal I would also fight for the things that would improve their lives. Nothing I’ve said is meant to suggest that it’s wrong to do that.

I think understanding of autism amongst professionals has a long way to go and I don’t agree with reward and punishment based systems that reward neurotypical behaviour. I feel that they cause untold internal stress for an autistic person.

i also observe in my neurodivergent kids that they don’t want to stand out, they try to blend in and that doesn’t come from me.

It is complicated. But as an autistic adult, I have never coped with work until diagnosed and adjustments made. I have communication and sensory needs that need to be met before I can do a job despite high academic intelligence. My grades at school were excellent but my mental health was poor. My efforts to fit in led me to feel defective and ‘wrong’, and led to self harm, eating disorders, mood disorders, suicidal behaviour, even mild psychotic symptoms. Masking can cause immense stress.

So it’s all really complicated. I’ll be name changing soon as this is so outing.

@NoYouSirName I found your post interesting as you are coming from this from a couple of perspectives both ND and as a parent of ND children.
Masking is an interesting subject all be it tempers can get flared. Many of us behave differently in different environments. Kids tend not to want to stand out especially when teenagers and I observe the same with my own son. The older he has gotten the more important it is to him to be one of the lads. The teenage need to fit in is a developmental phase that thankfully eases off as you move out of those teenage years.
I get the impression that masking means different things to different people. Sometimes people seem to mean not being able to stim is masking, however if you actually were to ask parents of autistic children and teenagers how many of them are actually discouraged away from this this. For others masking seems to mean everything they say and do when outside the house.
Some consider therapy to teach masking and others describe masking as a natural behaviour done by everyone that can. It honestly makes parenting a teen who wants desperately to fit in and have friends very tricky.

So you feel that the non-verbal aspect is a direct result of autism, rather than a co-morbid language disorder?

It is a co morbidity and it's not a causal relationship (I.e. she is non verbal because she has Autism) but having a primarily social communication difficulty (Autism) does make you more likely to have anxiety, mental health, speech and language difficulties etc. because of the overall nature of the condition (how the brain process sensory information and longitudinal difficulties with social communication, interaction etc). Sort of like a domino affect.

Well... I'm simplistic terms and it is a bit confusing but they are two (or more) different conditions occurring within the same being/same time as that is what a co morbidity is.

So in essence you do have to treat the two conditions. For example, a person may have ASD and anxiety. I'm not just going to treat the difficulties with the ASD as intervention would only resolve the difficulties the individual has with their Autism and would not make impact with the anxiety- it may help a little but you won't see much or any impact. The person would also need tailored intervention for anxiety.

However, with an individual who has Autism and anxiety, it may affect my style of treatment of what I would typically use for a person w/o Autism who has anxiety. So maybe CBT won't be useful, but I may explore different approaches, using visuals, different modes of delivering information, I may look into animals assisted therapy. But this would not affect the dosage of the intervention I deliver..

The above is very common as to why people with Autism/Autistic people are denied services or lack of. Their comorbidity conditions (I.e. depression, mental health, LD, language disorder, dyspraxia etc) are not properly treated or explored as services feel that Autism is the culprit.

So in essence you do have to treat the two conditions. For example, a person may have ASD and anxiety. I'm not just going to treat the difficulties with the ASD as intervention would only resolve the difficulties the individual has with their Autism and would not make impact with the anxiety- it may help a little but you won't see much or any impact. The person would also need tailored intervention for anxiety.

So you consider Autism as a condition that needs treated, like anxiety? In this situation I would say they were an autistic person who needs to be treated for anxiety. If they had learning disabilities and autism as well as anxiety then I would say they are an autistic LD person who needs treated for anxiety. In both cases their anxiety treatment needs to be tailored to the person. You cannot discount their autism or their LD whilst treating their anxiety. Or treat them the same as someone or have only one of LD and autism.

You cannot discount their autism or their LD whilst treating their anxiety. Or treat them the same as someone or have only one of LD and autism. I think what makes me uncomfortable is that the speech and language practitioners seem to be treating the other comorbidities rather than the language disorder. How can we have people who’s primary difficulty is verbal communication being given no direct therapy? I think it’s always been a pretty poor offering but agree with the OP that the idea that you shouldn’t help because it’s squashing ND is unhelpful.
I don’t think many actually have any idea what it’s like to live unable to even say yes or no, or use a name, or a verb, or a pronoun, or past tense. I think there is an assumption that these individuals don’t have anything to say or contribute and have some blanket condition called “learning disability”. That isn’t correct. They could be as able, thoughtful, or brilliant as you on your best day.

5zeds why are you conflating learning disability with being non-verbal? They are very different things.

@Lovelyricepudding sorry if you read it that way, I meant the exact opposite.

I think what’s also confusing you here is that a ‘primary difficulty with verbal communication’ may not mean a child needs or could benefit from direct therapy.

non- verbal children aren’t always the ones that can benefit most from ‘direct therapy’. I have spent this afternoon in a classroom of preverbal teenagers with ASD coaching the adults in the class on how to support 3 of them to use iPads to communicate. For these three teenagers the biggest difference I can make is getting their environment right so they are getting opportunities to practise their communication skills in functional situations throughout the school day. While their main difficultly may be that they don’t speak their other difficulty (autism) means they would struggle to generalise those skills into a classroom if I taught them in a stand-alone therapy session.

Tomorrow I will be doing direct therapy with kids. Those kids can speak but have speech sound difficulties. I can work on those difficulties in sessions and, because it’s their only difficulty, they will be able to generalise those improvements in their speech into there everyday life.

Speech therapy isn’t about giving the most support to the seemingly most needy child. It’s about giving them the support that will actually make a difference in everyday life and not just in therapy sessions.