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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?

OP posts:
PomegranateSeed · 25/09/2022 21:14

I’m not really sure what you are suggesting. Are you saying that autistic children should be encouraged to mask?

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.

PomegranateSeed · 25/09/2022 21:16

Completely agree @BryceQuinlanTheFirst

Greenapplesandpears · 25/09/2022 21:19

I have multiple dc with asd. I think the approach you are describing is a welcome change - it has never felt right when I’ve had targets in SEN plans basically wanting one of my dc to be adhering to social norms as I feel they were just being taught and encouraged to mask rather than be their authentic selves with appropriate support around them

Hoardasurass · 25/09/2022 21:20

Expecting children with asd to perform to neurotypical norms is a recipe for failure

ofwarren · 25/09/2022 21:21

PomegranateSeed · 25/09/2022 21:14

I’m not really sure what you are suggesting. Are you saying that autistic children should be encouraged to mask?

This
It sounds like the changes are going in the right direction to me.

AntlerRose · 25/09/2022 21:22

I think learning how a conversation works is a useful skill for a child who might not pick it up naturally.

I dont mean 'nice weather today' but role playing and rehearsing buying something in a shop or order a meal.

Is that the type of thing you mean you are stopped from doing?

mamainlove · 25/09/2022 21:22

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.

Because developing play skills encourages cognition, speech and language and knowledge about the world. But of course you can get all the above without the development of play skills but we are putting the stop to all of the above.

The point of my post was that there is a real fear of reduction to services of children and teens with ASD. There's a big movement of neurodiversity but not a big move on support of services to parents, innovations and research into new interventions and practices of children with ASD.

OP posts:
mamainlove · 25/09/2022 21:23

AntlerRose · 25/09/2022 21:22

I think learning how a conversation works is a useful skill for a child who might not pick it up naturally.

I dont mean 'nice weather today' but role playing and rehearsing buying something in a shop or order a meal.

Is that the type of thing you mean you are stopped from doing?

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.

OP posts:
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

Exhaustedmoose · 25/09/2022 21:24

Thus country is fecking fecked

Greenapplesandpears · 25/09/2022 21:25

I have asd as well and I vividly remember the pain caused to me by my own mothers ‘de sensitisation ‘ programme (basically her way of trying to ‘normalise’ me) I was forced into all the situations that caused meltdowns ot shutdown I was humiliated and made to practice conversations and social situations over and over . If I did it wrong I was ridiculed as a way to make me try harder. I know this is an extreme example but the theory behind it I suppose is the same - to make a person with asd act as if they don’t have asd

BryceQuinlanTheFirst · 25/09/2022 21:25

But in my son's case. He couldn't possibly grasp imaginative play and constantly modelling this would cause him stress, which would further limit his learning potential. There are other ways to develop his skills. It is ableism to keep expecting him to conform to how typical kids play.

I don't understand how your two points are connected, either in your op or in your update message just now.

Why is the neuroaffirming change leading to a reduction is support?

Didiplanthis · 25/09/2022 21:25

I see the issue here is withdrawal of services deemed inappropriate but not replacing it with more appropriate things in their place, leaving these children with even less services then they had before...

Loopyloopy · 25/09/2022 21:26

So, its one of those things where subtle improvements/changes in support for people with ASD are used as an excuse to remove services?

AntlerRose · 25/09/2022 21:26

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.

But how woukd a child indicate whether they did or didnt want a friend and what if they did want one but just didnt know how so just stuck to a safe thing like playing alone.

No wonder you have concerns.

Greenapplesandpears · 25/09/2022 21:27

AntlerRose · 25/09/2022 21:22

I think learning how a conversation works is a useful skill for a child who might not pick it up naturally.

I dont mean 'nice weather today' but role playing and rehearsing buying something in a shop or order a meal.

Is that the type of thing you mean you are stopped from doing?

But the tools are now available to enable anyone to buy items online without the need for any interaction so why teach these ‘skills’ if they are a difficult area and there is a way to achieve the same outcome in a way that’s acceptable to someone with asd ?

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.

AntlerRose · 25/09/2022 21:31

Greenapplesandpears · 25/09/2022 21:27

But the tools are now available to enable anyone to buy items online without the need for any interaction so why teach these ‘skills’ if they are a difficult area and there is a way to achieve the same outcome in a way that’s acceptable to someone with asd ?

They were just examples as i was trying to understand what she was stopped from doing.

Not everyone with asd want no interaction with anyone ever. My son wants to interact. He needs support on how. He has to be explicity taught how. He is then pleased with his skill.

mamainlove · 25/09/2022 21:32

BryceQuinlanTheFirst · 25/09/2022 21:25

But in my son's case. He couldn't possibly grasp imaginative play and constantly modelling this would cause him stress, which would further limit his learning potential. There are other ways to develop his skills. It is ableism to keep expecting him to conform to how typical kids play.

I don't understand how your two points are connected, either in your op or in your update message just now.

Why is the neuroaffirming change leading to a reduction is support?

Yes, some children never grasp imaginative play. My point is that we a reducing opportunities. They are telling us to put a full stop encouraging functional and imaginative play because that is ableism. Whereas before, where we would follow the child in their play and model functional activities/imaginative play with toys- but if the child doesn't grasp it- that's fine, we move on. But Now they are saying, don't even bother- therefore reducing opportunities.

So we are scrapping, PECS, timetables/rewards, social thinking methodologies, using terms like language difficulties, conversational skills, etc etc.

OP posts:
Awayyego · 25/09/2022 21:34

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

That is exactly the point. Why should someone with autism have to learn to fit in? Why can’t those who don’t have autism learn to be more accepting of difference?
You are asking the person with supposedly “impaired communication” to change their communication to make the person with supposedly “unimpaired communication “ feel better, without expecting the person with the supposedly better communication to change at all.

Twizbe · 25/09/2022 21:34

I can see what you mean.

I remember watching a programme years and years ago about a young woman with ASD. She got a huge amount of sensory comfort from brick walls. She had 1 particular wall at home that she'd cuddle for hours. She talked about how her parents had taught her that she could touch walls at home but not ones belonging to others. Fair enough right?

There are so many subtle rules in our society. NT people pick up a lot of these just by being around. If a ND child doesn't pick up the social cues why is it wrong to teach them? Doesn't it help them to have more independence as adults?

Greenapplesandpears · 25/09/2022 21:37

I think it’s difficult because so many interventions just encourage masking . One of my dc will not mask at all - he is considered more ‘severe’ than my other dc who do mask but I don’t think that’s the case at all and I actually feel it’s easier for me to leave him at school because I know he will object loudly and strongly to anything that puts him out of his comfort zone whereas my other dc masked to the point they were physically unwell

mamainlove · 25/09/2022 21:37

Why is the neuroaffirming change leading to a reduction is support?

In the NHS, we have to point out to stakenholders that the reason why we need more funding for these group of children is because of X and if they don't get X, then this will have a detriment to their lives.

In terms of children with ASD and the neurodiversity trend, we have to write things like difference and make sure
our reports are not negative (I.e. stating that this child's has social communication difficulties).

The issue is that Educational Health Care Plans need to be quite blunt in order for children and young people to prove to Local Authorities that they need more help/funding. Calling everything a difference, would give them leeway to say "well... X doesn't need speech and language to improve his communication skills, his ASD is a difference and that his way of communication needs to be respected" (bad example but you get the drift).

OP posts:
5zeds · 25/09/2022 21:39

So what DO you offer autistic children?

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