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?

[mamainlove]

@NoYouSirName

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.

Please don't take this the wrong way.

But there are children with ASD who have high support needs, are not able to function at all, have no communication, who are either in prison or in institutions. My worry is mainly for these groups of children/adults not adults with ASD who can relatively function in society and have adequate communication skills to function day to day.

[Herja]

@AntlerRose

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.

My DS is the same AntlerRose, I begged from family to fund private SALT. Going to the corner shop to choose and pay for things himself is now one of favourite things. He also is confident in answering in class now too, so joins in far more. He's pleased with this and wanted to understand how to do these things. Some of the best money I have spent (and will continue to spend); it has improved his confidence tenfold.

[mamainlove]

@5zeds

So what DO you offer autistic children?

So what we are offering is:

Self advocacy
Autism play
Communication (like PODD)
Taking into account sensory differences.

That's it.

[mamainlove]

@Awayyego

Unfortunately, the real world hasn't caught up. The biggest problem with ASD is the vulnerability that comes with it. There are children, with ASD, who have very significant communication skills who by large will be supported by the "state" when their parents die. These are the people who are hugely vulnerable in society. If teaching my clients how to understand social cues, life skills, like going out to the who, requesting, building on their communication and conversational skills and having higher expectations is me being ableist. Then so be it. I want the children who I work with to be able to have the best quality of life and function in society.

[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.

[piegone]

What do you mean by 'the ND trend'?

[WinterSpringSummerorFall]

What is autism play?

[Teaandtoastedbiscuits]

Why are you as an speech and language therapist using the term neurodiversity when you actually mean people with asd/autism. Are you also including people with adhd?

[PomegranateSeed]

So you are saying you want to encourage autistic children to mask their differences and learn to appear to be more like the predominant neurotype? It sounds like your service are very sensible and are preventing a lot of the kids from a lifetime of trauma. You do know that you can’t make an apple into an orange and both have their merits?

[Crunchingleaf]

What about the kids who can learn some social cues etc.
Its one thing to acknowledge that my sons stimming has an important function for him and it’s okay for him to do this behaviour when needed, but along the way he has had to modify behaviours in a school environment such as putting up his hand etc. it’s natural behaviour for him to shout out when he knows something. He loves being in a classroom environment and loves having friends these things don’t come naturally to him. What suits him obviously doesn’t apply to all ASD kids out there.

[mamainlove]

@Teaandtoastedbiscuits

Why are you as an speech and language therapist using the term neurodiversity when you actually mean people with asd/autism. Are you also including people with adhd?

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

[TrainspottingWelsh]

It sounds more like the opposite of inclusivity. Trying to shoehorn all nd children into a box of low expectations with no understanding that nd children are individuals. Of course nobody should be forcing nt behaviour on dc, but likewise we shouldn’t be writing dc off in one area because some other nd dc struggle with it, or because they themselves struggle in a different area.

Most nd adults mask to some degree everyday. What we should be doing is helping dc learn from the start where their own boundaries are and when learning skills or even masking is for their own long term benefit and that it’s ok not to when it’s purely to needlessly comply with nt expectations.

[WinterSpringSummerorFall]

@PomegranateSeed

So you are saying you want to encourage autistic children to mask their differences and learn to appear to be more like the predominant neurotype? It sounds like your service are very sensible and are preventing a lot of the kids from a lifetime of trauma. You do know that you can’t make an apple into an orange and both have their merits?

I think the children the OP is talking about would not have the cognitive skills to mask their differences. They would be in their own autistic world and not.be able to interact with the rest of the world.without support. But we are not able to give that support because intervention goes against valuing ND.

[PomegranateSeed]

You do realise that communication difficulties is one of the diagnostic criteria of autism don’t you OP? It’s just with you mentioning that children with autism have communication difficulties! If you are a SALT I’m very concerned about your ablism, lack of knowledge about autism and neurodivergence.

[Stevenage689]

Removing PECS is worrying. It's one thing to be avoid teaching children to mask, but the world is a terrifying place for people with no ability to make requests for their needs and wants.

[mamainlove]

@WinterSpringSummerorFall

What is autism play?

Sorry. It's basically about following the children's play. So if a child with ASD has a particular style in play then we should be encouraging that and not encouraging other forms of play (which are neurotypical and ableist).Very similar to intensive interaction anyway.

[WinterSpringSummerorFall]

Most NT adults and children also mask impulses... and modify behaviour based on context. It is easier for some than others.

[mamainlove]

@PomegranateSeed

So you are saying you want to encourage autistic children to mask their differences and learn to appear to be more like the predominant neurotype? It sounds like your service are very sensible and are preventing a lot of the kids from a lifetime of trauma. You do know that you can’t make an apple into an orange and both have their merits?

No- of course not. But these are the same services that give children with ASD minuscule support and ridicule me as to why I give these children more hours for therapy as children with ASD "don't make much progress" and "they have generalisation issues so they don't need more therapy".

[5zeds]

I think salt should focus on speech and language and less on amateur psychology

[WinterSpringSummerorFall]

@5zeds

I think salt should focus on speech and language and less on amateur psychology

This is intriguing....what do you mean?

[LiveInSunshine]

I hope the next step is realising that children with asd often have parents with asd.

Make clear written reports, not talking at people. Let people digest the information and process it away from an overwhelming situation. Give an email out and save time to reply, instead of face to face.

Chat groups, parent groups etc are often the only support. Come and chat together about problems, post diagnosis parents groups, asd parent groups… talk talk talk. No solutions. No opportunity for a parent who struggles to ever get a word in in the environment created.

Yes, I keep forgetting about eye contact when stressed. Get over it and move forward. It’s fine and functional if you can let go of the expectation.

Please- ask the parents about what worked for them. Then advocate for the child at school. Don’t just tell them. Listen.

Ask the child, or just watch the child, and see what the child wants. Respond differently if they are disinterested in play compared to if they are seeking interaction and frustrated by a lack of tools to do so.

Don’t presume. A lack of play skills may be a rich inner world of imagination. Wonderful cognitive skills. Look for the clues in the atypical expression.

I remember our first ever SLT assessment. I nearly cried. My child parroted every single word, pig, oink, cow, moo. Didn’t make any eye contact, greet the person, comment or vocalise in anyway apart from parroting the person. Excellent speech sounds I was told. Absolutely zero understanding of any of it. Couldn’t follow a one step instruction, say hello or even parrot the word before the previous word. Finally back in the system in reception and they realised her language understanding was under 12 months, as I’d been saying. This isn’t a rant at the OP, but in general some of the arrogance and presumption of the neurontypical service providers really needs dismantling completely before it is recreated functionally.

[mamainlove]

@PomegranateSeed

You do realise that communication difficulties is one of the diagnostic criteria of autism don’t you OP? It’s just with you mentioning that children with autism have communication difficulties! If you are a SALT I’m very concerned about your ablism, lack of knowledge about autism and neurodivergence.

I don't understand. Communication difficulties is part of the diagnostic criteria for ASD- yes, but we now have to write "communication differences" as opposed to difficulties. I was highlighting that the problem with the terminology does not really highlight the difficulties of children with ASD- particularly if we have to ask stake holders to provide more funding.

[Zedcarz]

Are your methods informed by people who are neurodivergent?

Absolutely agree we should not only use tools which are designed for use with neurotypical people.
We have been trying to mould autistic people to fit into an NT world for too long
NT systems are not fit for purpose, hence our huge mental health crisis, employee sickness rate (particularly within NHS and local authorities) anxious school avoidant children etc.
It's time for change.
There are more neurodivergent people than we ever realised, we need to stop adapting children's behaviour to fit into narrow constraints and educate the educators in how to adapt their approach, alter the environment and Absolutely its about respecting difference

[Zedcarz]

@LiveInSunshine

I hope the next step is realising that children with asd often have parents with asd.

Make clear written reports, not talking at people. Let people digest the information and process it away from an overwhelming situation. Give an email out and save time to reply, instead of face to face.

Chat groups, parent groups etc are often the only support. Come and chat together about problems, post diagnosis parents groups, asd parent groups… talk talk talk. No solutions. No opportunity for a parent who struggles to ever get a word in in the environment created.

Yes, I keep forgetting about eye contact when stressed. Get over it and move forward. It’s fine and functional if you can let go of the expectation.

Please- ask the parents about what worked for them. Then advocate for the child at school. Don’t just tell them. Listen.

Ask the child, or just watch the child, and see what the child wants. Respond differently if they are disinterested in play compared to if they are seeking interaction and frustrated by a lack of tools to do so.

Don’t presume. A lack of play skills may be a rich inner world of imagination. Wonderful cognitive skills. Look for the clues in the atypical expression.

I remember our first ever SLT assessment. I nearly cried. My child parroted every single word, pig, oink, cow, moo. Didn’t make any eye contact, greet the person, comment or vocalise in anyway apart from parroting the person. Excellent speech sounds I was told. Absolutely zero understanding of any of it. Couldn’t follow a one step instruction, say hello or even parrot the word before the previous word. Finally back in the system in reception and they realised her language understanding was under 12 months, as I’d been saying. This isn’t a rant at the OP, but in general some of the arrogance and presumption of the neurontypical service providers really needs dismantling completely before it is recreated functionally.

Hear hear 👏

[5zeds]

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