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?

[firef1y]

@Exhaustedmoose

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

How about the rest of the world learn to fit in with us, rather than us having to go through the exhausting process of masking and trying to fit in with thr rest of the world???

[Teaandtoastedbiscuits]

@mamainlove

Yes but we don't typically see children with ADHD unless they have speech, language and communication needs.

So use the correct terminology/language!

[firef1y]

@Exhaustedmoose

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

Oh and great job of othering. Dont know about anyone else but just the fact you lump us as "they" is telling in you attitude to us.

[heresamarshmallow]

You clearly ascribe more to the medical model of disability than the social, but that aside… I’m not completely sure where you’re coming from with this.

Greater understanding and acceptability of neurodiversity isn’t a problem in itself. And like others have said, having to mask in day to day life is draining, exhausting and damaging for many autistic people.

You can’t cure autism (and a lot of people wouldn’t want that even if it was an option). We should be pushing for further acceptance, not trying to make people fit into societal norms that hurt them.

[BryceQuinlanTheFirst]

Why aren't more UK SLTs using AAC devices for autistic children with little or no speech?

[mamainlove]

@5zeds

Do you ever ask adults with asd and/or their parents what helped?

Always. It makes goal writing much easier.

But I want to hear more from minimal verbal adults with ASD.

[WinterSpringSummerorFall]

Yes, I do that... if the parent divulge that they are also autistic. Quite often they are not yet at the stage of understanding their own profile, so.I am not able to do that easily.

I think the problem is that the type of children we are trying to support would never become adults who are able to advocate for themselves in the way that verbal, high IQ autistic adults can. So we are being forced to change interventions for all autistic children based on the very valid views (for their own neurotype) of a percentage of autistic adults.

It feels wrong. And we are doing them a disservice.

[5zeds]

Why aren't more UK SLTs using AAC devices for autistic children with little or no speech?

WHY AREN’T THEY???? WHY?!!!! It’s infuriating.

[WinterSpringSummerorFall]

@5zeds

Why aren't more UK SLTs using AAC devices for autistic children with little or no speech?

WHY AREN’T THEY???? WHY?!!!! It’s infuriating.

This is a different question for a different thread.

[mamainlove]

@BryceQuinlanTheFirst

Why aren't more UK SLTs using AAC devices for autistic children with little or no speech?

Little awareness, training and funding. Plus this hierarchy method of thinking, a child has to do X before he can use something like a high tec AAC.

[mamainlove]

@WinterSpringSummerorFall

Yes, I do that... if the parent divulge that they are also autistic. Quite often they are not yet at the stage of understanding their own profile, so.I am not able to do that easily.

I think the problem is that the type of children we are trying to support would never become adults who are able to advocate for themselves in the way that verbal, high IQ autistic adults can. So we are being forced to change interventions for all autistic children based on the very valid views (for their own neurotype) of a percentage of autistic adults.

It feels wrong. And we are doing them a disservice.

Yes. Exactly my point.

[5zeds]

But I want to hear more from minimal verbal adults with ASD. devices that talk for you are fairly useful in this context.

[Babyitstimetomoveon]

Sounds like things are going the right way to me. Our speech and language support has Bern terrible. Years forcing pecs, pixon board etc on a child that isn't interested. Tryjng to get me to force eye contact etc. I fought for years for a communication device, even saying I would purchase myself and was told not to as if he couldn't use a pixon board he wouldn'tbe able to use it. Finally flipped a couple of months ago and gave him one myself, he's picked it up very quickly and has started to ask independently for things. Should have done this years ago but I put too much faith in the 'experts'.

[Zedcarz]

@WinterSpringSummerorFall

Also an NHS SLT... we are at the stage of discussions and considering practice changes, we haven't yet stopped interventions.

But we are (as I imagine the OP is) already child and family led....for example I would agree lining up the tiger and elephant and making a pattern is an equally valid play methodology, but would also encourage intensive interaction within this play schema so that the child understands there are people in the world interested in the same things they are and can therefore worth (in whatever way) communicating with.

I am concerned neurodiversity might be an excuse to cut services?

I am also concerned that parents' wishes don't line up with what neurodiverse adults are telling us what interventions for autistic hildren should / shouldn't be.

I am also concerned that a small, vocal minority, so called high functioning, are speaking for the entire autistic community and perhaps not all opinions are being considered.

'So called High functioning ' ?
And you're worried about 'a small vocal minority of autistic people' speaking on behalf of other autistic people?
The other part of this autistic community they speak for are 'so called low functioning' then?

I had to delete most of my response as so angry.

Please don't ever think you can speak for autistic children or their parents if you talk about them like this.

[mamainlove]

@heresamarshmallow

You clearly ascribe more to the medical model of disability than the social, but that aside… I’m not completely sure where you’re coming from with this.

Greater understanding and acceptability of neurodiversity isn’t a problem in itself. And like others have said, having to mask in day to day life is draining, exhausting and damaging for many autistic people.

You can’t cure autism (and a lot of people wouldn’t want that even if it was an option). We should be pushing for further acceptance, not trying to make people fit into societal norms that hurt them.

I do a bit. I have seen adults with severe ASD detained in services and used to work with neurodiverse young people in youth detention. So it does change my view somewhat. In these scenarios, these adults/young people were left without support/minimal support.

I'm glad that there is an awareness of neurodiversity but it's leaving us with jo alternatives. Currently, research is looking into neurodiversity etc but is not exploring new practices to support services for children with ASD and their parents, looking into quality of life and examining our service provisions.

[gogohmm]

I completely disagree I have an adult child with autism diagnosed at 2. I've never settled for being able to "be her authentic self" as someone puts it because she needs to live in this world not some idealised society thought of my academics. She's a square peg, the this world has round holes so since diagnosis we through therapy, teaching etc have worked on rounding those sharp edges, the coping mechanisms for the world she lives in. It's not been plain sailing, I'd never pretend otherwise but finally aged 23 she's semi independent, still studying for her degree.

I refused the special Ed placement for instance because there was no track record of exam success at the school they wanted to send her to, instead I fought for specialist provision at her mainstream school. She's worked full time in the past though finds pt is more manageable, masking isn't easy but it means she is able to cope mentally, she works I morning a week whilst at university, plus occasional gigs

[BryceQuinlanTheFirst]

@5zeds

Why aren't more UK SLTs using AAC devices for autistic children with little or no speech?

WHY AREN’T THEY???? WHY?!!!! It’s infuriating.

It really is. I'm facing a lot of pushback at the moment but I'm going to train myself on it and start my son at Christmas. So many of the SLTs just parrot "they must use pecs first". That's absolute rubbish

[WinterSpringSummerorFall]

I used "so called" high functioning to indicate it was not an acceptable turn or phrase in the autistic community.

But I will leave this thread now. I believe the OP is trying to support autistic people.and so am I.

[mamainlove]

@5zeds

But I want to hear more from minimal verbal adults with ASD. devices that talk for you are fairly useful in this context.

The issue is that it needs to be taught. I cannot give a device to a child with ASD and say "hey, use this". It's needs to be modelled, modelled, school has to use it, parents have to use it. If I have a minimal verbal student with ASD and he/she is only seeing SLT across the year for 6 visits- well that it's not really going to amount to much.

[5zeds]

I think it’s less about low/high functioning (ie low or hi iq) and more about verbal/nonverbal (and everything in between)

[amijustparanoidorjuststoned]

You lost me at the use of the term "trend" when it comes to neurodiversity.

Perhaps you should reconsider your career choices.

[LiveInSunshine]

Oh gosh. Verbal and high IQ are not dependent on each other!!! Argh.
My non speaking cousin is a maths researcher who can write a clear email or report. Better than most.
Move away from that one. Rich inner worlds exist inside many many wonderful people who do not communicate through spoken language.
There’s quite a few books out there nowadays, Internet posts and even an amazing Valedictorian speech on YouTube. They have a voice to listen to…

[Exhaustedmoose]

The day you say you're the same and not divergent will be the day I don't say "They" @firef1y

[Takeachance18]

Just comparing what I hear about mental health services for children/adults who are autistic - nearly zero, yet lots end up stuck in mental health hospital, in crisis and stuck - but they couldn't access services early enough due to a diagnosis. We also know learning languages is easier as children. It is pointless forcing something and needs to be service user led, but stopping doing something because it doesn't work, is a massive generalization- but it is easier to stop doing something than try something different.

[Zedcarz]

@WinterSpringSummerorFall

Yes, I do that... if the parent divulge that they are also autistic. Quite often they are not yet at the stage of understanding their own profile, so.I am not able to do that easily.

I think the problem is that the type of children we are trying to support would never become adults who are able to advocate for themselves in the way that verbal, high IQ autistic adults can. So we are being forced to change interventions for all autistic children based on the very valid views (for their own neurotype) of a percentage of autistic adults.

It feels wrong. And we are doing them a disservice.

The parents understandtheir own profile. Theyve lived with themselves all their lives and will have also learned a great deal about it through learning about their kids and recognising similar traits , triggers etc.
They may not recognise themselves in the language you use in a professional setting but they are the expert on themselves and their children.
They come to you for your expertise in provision.
If you are not researching or trained in new improved approaches then you're doing the families a disservice, yourself and your colleagues a disservice.
Everything we know changes all the time.
The world is changing.
Knowledge is changing.
Research is funded in order to make a difference in any field. to ignore that research because youve always done it this way is foolish and will leave you behind.