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?

Assess, advice and discharge.
here they skip advice in my experience. It’s assess, discharge.

I think it’s ableist to try a teach significantly above (or below) an individual’s developmental level, because rushing them along or dragging them back has real and lasting impact. “Treating” someone for something that is not broken an is in fact their norm isn’t always helping. For example forcing a nt child to walk months before they are able isn’t a treatment, teaching a child far beyond their understanding of language is dreadful. Similarly insisting they use language like a nt 4 year old before they learn to read or they use pecs before they use any other communication method is just daft. So many wasted years and wasted opportunities to really help people.

I think she's basically saying severely autistic children have other ways of communicating they're need's so don't need speech therapy.

A lot use signing or picture symbols so that should be the focus. Sometimes when they can see a picture they will say the word. You cannot force speech from an autistic child. You need to find another way.

One size does not fit all but SALT is not really fit for the needs of children with the most severe disabilities. The more able might get more out of it. I'm not an expert no just a mum of two with severe autism/ADHD.

I don’t really understand what you’re getting at with your post op (I’m not being snarky). You’ve mentioned the neurodiversity ‘trend’… that sounds off to me.

Ds is autistic and I was very happy with the SLT support he received when he was younger.

I don’t begrudge other children (not diagnosed ASD) potentially getting further support ahead of my child. Lots of us need help and I’m sure their needs are valid too.

You will be surprised that some of these children with ASD, who I'm talking about, do not have co current difficulties. Some of my non verbal students with ASD has above average cognitive abilities. But coupled with the lack to support earlier, and reduction to services, they have developed- what others deem, challenging behaviours and are not safe to be in the public domain.

No, I’m not at all surprised because I am parent to three autistic dc with varying support needs, none of whom have learning difficulties. The issue is, what support would be helpful to them. I can’t agree that coaching them to behave in a neurotypical way is the goal. The challenging and unsafe behaviour, in the absence of learning disabilities, usually arises as a result of mental health needs, and ‘upskilling’ as you put it, where the assumption is that autistic people lack skills, is a sure fire way to wreck mental health.

When you say

*No one is saying that we should be encouraging masking. I never said this in my post. I've said it's important to teach ASD children skills.

The issue comes with seeing ASD being a difference vs a disability. If I had a student who has cerebral palsy and I took him/here to physiotherapy in the hope that he/she can walk or gain enough function in her limbs in order to navigate safely- is that ableist?*

you are seeing neurodivergence as a deficit. You are taking the view that neurodivergent children need to be ‘taught’ something that they are lacking. Gain functioning, ‘ups kill’. They already have perfectly good skills, and it will serve them better to recognise them rather than teach them that they are inherently deficient.

With the example of the autistic child who seemed happy alone at break time, but in fact didn’t know how to join a group… rather than assuming his skills are deficient, it’s important to see that there is difficulty in both sides. He is unable to relate to his neurotypical peers, and they are also struggling to relate to him. He is no more deficient than they are. Awareness will help. Teaching him to act neurotypical in order to be accepted might look like a success but is actually setting him up for a lifetime of being unable to be himself. Rather than teaching someone to walk, it’s more like teaching someone who is gay to act straight. You might see it as success when they get married and have kids but that person is deeply unhappy.

Following that thread through to it's conclusion, I could see Local Authorities making the argument that, if the child with ASD does not need to meet the sorts of targets set in EHCPs then some of the justifications for the EHCP (variance from peers, specific support needed, involvement from external agencies, etc.) will no longer be seen as valid because they could say that the child is: "fine as they are". Heck, the eventual end of the line conclusion could be: "It's ableist to ask children with ASD to attend mainstream schools.

Wouldn’t the more logical conclusion be that mainstream schools need to become more inclusive? Or that more specialist provision needs to be available?

I think I’ve probably read the op wrong (half asleep). Just ignore me!

Please don't leave this thread. The problem within the SLT field is that their is a lack of diversity (and I mean cultures, genders, life experiences) and we need to conform. We need to hear opposing voices and more questions about our practice.

This! My son did want to play but he just didn’t know how. Once he learnt some basic social skills he now loves spending time with other kids.
I agree with you OP it is worrying. I change lots of things to suit my son (as I do with my neurotypical child) but he does need to fit into society and hopefully live a happy life in this world. I’m a teacher too and I see the reduction in services, it really is so sad, our children deserve better!

I have autism and I work with autistic clients I am really struggling with the idea that we need to prioritise teaching NT behaviours to ND children in order to increase forms of communication. Every person I have ever met who has autism and has the capacity to mask does so. In order to work, have relationships and live their life. Every autistic person I have met who doesn't have the understanding required to mask successfully, will never have that understanding - and nor should they feel like they should have to (Not masking is a good thing in my experience). NT people either accept ND or they don't. The whole world feels like a NT classroom though, we really don't need that many lessons in how that works. I feel that we should teaching ND children not to mask and to be more congruent, not less. Because this is what you are taking away when you deny integral autistic traits. Congruency and the opportunity to be true to yourself.

Oh wait a minute though.... Am I just an articulate autistic person advocating for all ND? Should I shut up and get out of the way so that NT paper pushers can make decisions instead?

There's a branch of academic psychology that argues all mental illness/disorders labels are damaging as it makes people identify with the illness, think 'its part of them' and not work on techniques to improve their function.

This argument follows that instead of labelling someone as 'nerodivergent' for example, we should look at whether someone is able to function at a basic level, and offer tailored intervention and support when they aren't.

I think this plays into this discussion - lots of people identify as neurodivergent when they are still able to talk, function, work etc and then think they can speak on behalf of people with more severe forms of asd or adhd who cannot speak/live functionally and spend their lives in institutions.

Actually, they probably need very different forms of support and their experiences won't be particularly comparable.

Err how about everyone else is taught that many of our behaviours aren't abnormal or something to be ashamed about and that plenty of us are capable of various jobs despite stimming or not wanting to go to office parties or wearing the same outfit every day.

Expecting US to be the ones to change ourselves to make the neurotypicals more comfortable is to expect autists and other neurodivergent people to exhaust themselves constantly masking their natural selves. The 'therapies' mentioned in this thread are linked to ABA!

Every time I think people are making positive steps forward in understanding and accepting us as we are, comments like some of these turn up and remind me we are just going backwards.

Not if it's coming off the back of the argument "It's ableist to expect a child with ASD to do things a NT child does," which appears to be where this is heading.

In that case, yes, you're looking at more special provision or some kind of "halfway" school system (for children who don't need full special provision but can't remain in mainstream as it would be ableist to expect them to). That narrative could lead to the partial (or complete) removal of children with ASD from mainstream schools.

It could end up making mainstream provision less inclusive and almost exclusively for NT children.

No one’s teaching anyone they’re ‘deficient’ FFS.

Anyone who falls for that suggestion does everyone who’s ever wanted to learn anything a huge disservice - and propagates and continues stigma.

Learning grows who you are, not crushes your soul. We’re all born ‘natural’ whether that’s ASD or not. The idea that education harms the sacred child brain is an old one, repeatedly disproved.

Children aren’t bags of flour - better for all if left unprocessed. Babies’ brains are made to grow and adapt.

Not just human brains either. Elephants don’t have rows about ableism, but they do teach calves social skills for as long as it takes. That’s real ‘natural’ in action.

I agree. They are different ways of communicating. But if you want your child to have good communication skills, that enables them to advocate, state their needs, likes, dislikes, opinions, news, negotiations etc. They need a robust communication system (I.e. a high tec AAC, PODD book, teaching them lots and lore of core vocabulary words through Makaton signing) not a few symbols or teaching a child 1-3 signs but this requires

1. more funding (which the neurodiversity realm doesn't appear to me advising)

2. Specialist and direct service to children with ASD, delivered by an SLT (not 6 visits a year from an SLT).

3. more money more money,

@NoYouSirName

I see Autism as both. A disability and a difference.

There are some adults, with ASD, who do lack some skills. That's just a fact. The adults I have witnessed, cannot ask for help, cannot dress/ go to the toilet, do not know who is a safe person/not, do not recognise if they are at risk of abuse or have an awareness. I mean. What do you want me say? There is no nice way of putting it. It's not their fault but it's due to their ASD.

About the student I was working with. Oh yes, I agree. In therapy, it's always both sides. The onus is not on the person with ASD. I was just giving an example of how we can unintentionally reduce opportunities,

It requires more specialist provision and lots and lots of money.

I think "your voice" should be heard. But I also think you need to "own your privilege" and advocate for more support for your ASD fellows. You appear articulate, can spell and construct grammar very well. The children who I work with, particularly the minimal verbal ones, are not given the same opportunity. They are held to the same standards when it comes to reading and writing in comparison to their NT peers, where writing can open up doors or communication if speech is looking unlikely to come.

For all the articulate ASD adults. It's great your bringing awareness and questioning our practices but please advocate for more support for adults and children with ASD who are struggling to function in society, who do not have adequate communication skills, who require a considerable amount of support to have a decent quality of life. Please do not let your voices over shine the adults/children. ASD children are all individual. We should not advocating for a one size fits all. We should be advocating for individualism and innovations.

Exactly this. I have autistic daughters diagnosed in their teens and its made me reassess myself, DH our siblings and wider family. I'm pretty sure undiagnosed autism is rife on both sides but all adults have jobs, homes and families , I keep getting quoted stats like only 25% of autistic people work and I think that's b**t, maybe only 25% of diagnosed autistic people work but In my generation and that of my parents it wasnt diagnosed ( and still isn't for many autistic girls and boys who aren't disruptive) I think there are a lot of ND adults out there who hold down jobs and have families . I don't want my DDs to feel.that autism means they can't do something or are unlikely to find employment.
ND people have different strengths and weaknesses across the spectrum.
If therapies like SALT give them coping strategies and to develop social skills for their own benefit and so they can set boundaries then thats hugely beneficial for them .
It sounds like a way of cost cutting , withdrawing support without putting any alternative in place.

If you came home one day to see someone you didn't know clinging to the side of your house I'm sure you'd ask what they were doing. Some people would ask nicely some wouldn't. It could hand out the person in a dangerous situation if the picked the wrong wall.

OP, you're talking about individualism, but you started talking about neurodiversity, when you meant ASD specifically. But not just ASD, you mean autistic people with speech and language difficulties, or a learning disability. People with a learning disability or S&L difficulties, will require different support to people with "just" ASD. The people who can't communicate verbally should be provided with options to enable them to be able to communicate, if they wish. But people with ASD don't need to learn how to pretend to be normal.

Yes, but the issue is that the movement is advocating an approach for all ASD children- with co occurring conditions or not.

I think it's rich for you say... if a minimal child wants to communicate or not. Communication is a fundamental right. Period. Whatever communication methods my clients use. I will make sure that it is robust enough.

Many decades ago, in many different parts of the world, people whose difficulties had led them to come into significant contact with the psychiatric services and institutions of the time started to come together and discuss their experiences.

A lot of them had experienced compulsory treatment, sometimes abusive, often long-term. They might call themselves survivors, or mad, or something else, but they talked, read theory, wrote, and started to come up with alternative ways of thinking about and living with their difficulties.

One of the ideas come up with by one of these groups of people was "recovery" — recovery on their own terms.

They began to talk about "recovery" as a process, and not a process of moving from a state of insanity to one of sanity, but a process of working towards a life with value to the person living it. A life which, even if there were ongoing difficulties that doctors might prefer to treat with heavy, limiting medications, was nevertheless a life worth living.

People would look outside the psychiatric system that had pathologised them, drugged them to the point of torpor, locked them up, kept them in the system for decades, dismissed their unusual experiences as meaningless, and condemned them to a life as a sick person. Instead they would find value and meaning where they were able to. Some would still use psychiatric medications and support to some extent, others chose not to as far as possible.

Fast-forward a few decades, and healthcare systems of the world have suddenly had an idea.

If they can claim that they're now following the "recovery model" in accordance with service-user-led philosophy, they needn't provide expensive psychiatric and psychological healthcare to people with mental illness in the long-term. They can change their name from a "Community Mental Health Team" to a "Community Mental Health Recovery Service", take on only the most severe of cases for the shortest possible time, and discharge them when they still have many ongoing symptoms. Even if the patient doesn't feel remotely ready. Even if they beg not to be discharged yet. After all, the recovery model is about finding your own meaning in life even if you're still experiencing symptoms, right? About not being left to drift on under mental health services, a perpetual patient — so it's best you're pushed out of the nest to fly, even if your wings are still only stubs.

Don't blame the people asking to be treated like people, just because services use their ideas as a pretext to cut costs. Those on the front line who deliver services and those who need the services, we're on the same side — don't fall for it, when the powers that dictate how these things happen take our ideas and use them against ourselves and each other.

I don’t really understand why SALT are focusing on ASD at all, surely their focus should be speech and language and “appropriate play” and “masking” or highly verbal autistics aren’t really their core concern (and frankly certainly shouldn’t be sucking up the funding for people with actual speech sand language difficulties). How can it be that people who cannot communicate at all are unable to access aac and we are wittering on about “play”?

As a parent to a child who non verbal until 7, I'm just glad that my child learned to communicate. That wasn't via the nhs but by non maintained special schooling.

I don't think his experience was anything to do with correcting him. It was about opening his world to possibilities he wouldn't get under the nhs. Finding his voice was never about trying to cure anything. It was mainly ( from my pov) about keeping him safe.

Have not rft.
my understanding is that most of these services offer training in basic skills.
not masking. Basic skills.

if you reckon it is ok for non verbal autistic children to NOT learn basic hygiene, basic communication or basic daily routines because YOU think that is masking I reserve the right to think you are a total bell end.
by basic I mean basic. Not even small talk. It is learning to say «thirsty» ( or similar), learning to actually go to the toilet - so being able to not wear a nappy at school at age 12. Learning to go to bed and sleep - or at least stay in bed until 6 am and not run around the house OR outdoors naked in 5 degrees. It is learning to say «Hello» as a rule when you meet familiar people.

some autistic people NEED this. It enables them to enjoy some social settings: and I mean enjoy! Not endure.
my autistic child is very happy with social interactions, on their terms. But in order to do that they need to have some basic skills. Like keeping their clothes on. Not chuck them off at any opportunity. Cute when they are 3, not cute when they are 12 and older. Also not hygienic OR safe.