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?

I do see my autism as a disability. I just don’t see disability as equating to deficit or something negative. I see disability as difference. Deviation from the norm.

I don’t feel that disabled people including autistic people shouldn’t be supported. What I have an issue with is that the end goal is often to pass as neurotypical.

Accommodating disability costs money, as op very rightly said. Truly inclusive education costs money. Workplace adjustments cost money. Enabling autistic people to thrive costs money.

Of course there are going to be tensions, especially if there are increased numbers of people wanting access to the same thing, but I'm not convinced that's what's going on with the SALT and related provision.

There are always movements for change, a wide range of people within those movements, and extremists within those movements.

Going back to the psychiatric survivors and the recovery movement that I mentioned earlier, there were people within those movements who wanted to abolish the system altogether. No psychiatrists, psychiatric drugs, psychiatric hospitals, forced treatment, no nothing. For anyone. Ever. There were also those that wanted very different systems, some quite expensive, and those who wanted reform of the existing ones

Taken over a broad span of time, those who wanted an end to all of it were probably a very small minority within the psychiatric survivor movement as a whole. They were part of a larger movement that wanted to think again about the best ways to think about and manage the kinds of problems that lead to psychiatric involvement, and had experienced the problems with the big mental hospitals and lifelong pathologisation.

It could potentially look like a big moneysaver for those who run services to shut down the hospitals, sack all the psychiatrists, and stop spending money on antipsychotics, and the best part is that you can say, "We're liberating people, giving them exactly what they asked for!" They can't do it completely, of course, because untreated mentally ill people are inconvenient to the general public, and because only a small minority even if psychiatric patients ever wanted the system completely gone. But what they have done is cut mental health inpatient provision way lower than what's needed, and cut outpatient provision to pretty much psychosis and imminent suicide only, all while trumpeting it as liberating and beneficial.

With ASD provision, many of the extremists aren't even those who would've been subject to the treatment they're campaigning against, which makes it more irritating, and makes it more tempting to blame the campaigners. But we know from other fields that it's perfectly possible for services to say "Yes, the extremists want all mental hospitals closed, but the extremists don't have the full picture, and we know hospitals are sometimes necessary, so we're not doing that". The problem is that it's just too tempting for Tories to cut and cut, and point to a group that's asking for something a bit like those cuts.

I'm no neurodiversity activist, and have reservations about parts of the theory and the way that these are expressed in online ND communities. I'm especially resistant to ideas which downplay the needs of some autistic people in favour of euphemistic words and other distortions of reality. But I'd like it if we could find ways for people, and carers of people, with difficulties in this broad area of autism to find commonalities, and I think it would be a mistake if we allowed services' cynical cherrypicking of neurodiversity ideas in pursuit of cost-cutting to drive the wedge even deeper.

Finally, a PP said something about rounding off the edges of their square peg to fit the round hole of 'normal life' No, it's about creating a square that neatly fits your peg.

For some people. Not for everyone. Some of us want to learn to get closer to fitting 'normal life' and that is what it might be about for us.

Part of the issue is a determination to separate learning disabilities from autism. So the problems faced by those with comorbid autism and LD are dismissed as being caused by the LD and therefore not relevant to the discussion of autism.
Sadly I think the original intent of the diagnosis of autism to highlight that these individuals might appear extremely limited but have normal or above normal capacity, is being lost.

To fit a square peg in a round hole you have to shave parts of the person away this is damaging to the person. If you make the hole square through the amazing thing is both the square and the round peg will fit.

Unfortunately it isn’t always possible or realistic to make the hole square. Of course if we put a bit of effort into really trying it would improve, but it’s never going to be a solution in itself.

Agree. As per my previous post.

However, I totally acknowledge that people are at completely different stages of acceptance and reality of their own circumstances.

Hence earlier in my post I said not every ND person would feel the same.

I'm sorry that I signed off with that last quote. It went against what I stand for. We are not identikits.

I have a physical disability. I always say that Awareness is good, Belief is better, and Support requires both.

I think the same applies with Neurodiversity. But it absolutely goes to show that not all experiences of any medical conditions are the same. There will always be variations and severities. My apologies.

@Lovelyricepudding

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 dont think they want to disconect from autistics with other issues through.
We get this accuesed of this alot in the deaf community that we are against others with other disabilities.
This is realy untrue as the deaf community has vast differences among its members. But it tends to get thrown at us when we question the lack of support deaf children get and the issues with makaton not be adequate. Its a way to shit us up and say our vies, knowlegde and expiences isnt valid.

Many SALT in my experience wont even listen to other perspectives. We have had families being denied support for hearing children unless families agree to implant.

When I read autistic perspectives o dont see anythibg to suggest they are disconecting from autistics with other conditions. Quite to opposite but you have to be open to really try amd see the world through the autistic lense

To fit a square peg in a round hole you have to shave parts of the person away this is damaging to the person. If you make the hole square through the amazing thing is both the square and the round peg will fit.

This ignores the fact that even neurotypical people typically modify their behaviors and actions to suit their surroundings and society, and parents teach neurotypical children to do this as well.

The naturalistic fallacy has already been discussed on this thread.

It was once considered a fantasy to expect ramps and wheelchair access it is now a legal requirement. Always perfect of course not but a marked improvement.

It wasnt that long ago that being Gay resulted in being crimilised and punished. Now it is an accepted part of life.

In wales children caught speaking wales would be humiliated by being made to wear a wooden sign around their neck and physically punished.

Many things that once were" just they way it is " and thankfully the world has adapted.

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?

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.

Well, isn't it lucky that nobody's actually suggesting that people can't wear ear defenders, then?
The conversation here is about an increasing tendency to not bother about stuff like language therapy or play therapy for children who would really benefit from this.

When I read autistic perspectives o dont see anythibg to suggest they are disconecting from autistics with other conditions. Quite to opposite but you have to be open to really try amd see the world through the autistic lense and yet many people on this thread have said that’s their experience. Perhaps it’s YOU who needs to see the world through an autistic lense. Are you seeing non-verbal or minimally verbal autistics in your spaces? Why not?

Totally irrelevant when all you get is two assesments per year and a referral to online tools.

NHS SALT provision is a joke. So whether or not toys are changed is totally irrelevant to the outcomes for the child

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.

Such a good point @Awayyego and perfectly illustrative of how it’s the minorities who are forced to shoulder the labour for assimilating.

I dread to think where my autistic DS would be now without support developing social communication and other skills. It's not about masking, it's about teaching skills that autistic children struggle to just "pick up" from typical social interaction. I found things that NT children would learn from the reactions of others he needed to be explicitly taught. It would be going autistic children a massive disservice to remove that support because it's a "difference" and "not a disorder".

As Russell Barkley says about ADHD: you can't argue for support and funding and additional services at the same time as saying that ADHD is a super power and not a disorder. This kind of rhetoric really harms ND people.

As you say it looks like this is already starting to be used as an excuse to remove services.

No, but when an autistic child wants but can't maintain any friendships that's a much bigger issue. My child went being lonely and unhappy to thriving following social skills and other support.

It's all well and good hoping the world will change for you and maybe it will over time, my child didn't have time to wait for that. He needed to know how to navigate the world he is in right now.

And tbh I can't see how people form friendships changing any time soon. People want to spend time with people whose company they enjoy. And they want those relationships to be relatively easy. People don't want to have to work at friendships. I can't see that changing ever.

Don't you think it would be useful for autistic children to being taught about NT people? How NT people think. What needs NT people have. Why NT people behave the way they do. And therefore what adaptations you as an autistic person need to make if you want to interact with NT people so they can be comfortable and understand you. Then the rest of the time you can just be your normal autistic self without shame and feeling dysfunctional. NT Awareness training or something.

But instead, we try to train autistic people to look and act like they're NT so they can survive in this world. It's fucked up.

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. They are survival techniques we've picked up ourselves from going through negative experiences all our lives. All these loud mouth HF autistic people you are slamming have likely been victims of NT negativity all their lives, so yeah they want to fight on behalf of other autistic people because they don't want others to go through the shit they went through at the hands of this ignorant world. They are not the enemy of your children. But do carry on with your negativity towards them. Do keep on trying to repress them and any other minority that doesn't fit your normal.

Part of the issue is a determination to separate learning disabilities from autism. So the problems faced by those with comorbid autism and LD are dismissed as being caused by the LD and therefore not relevant to the discussion of autism.
Sadly I think the original intent of the diagnosis of autism to highlight that these individuals might appear extremely limited but have normal or above normal capacity, is being lost.

This is the nub of the problem. Well said!

To support someone we have to name it, recognise it and understand what is needed. Sadly I think we are actually getting worse as professionals and in the neurodiversity movement at understanding autism. In fact it is now unrecognizable - people who are diagnosed autistic can be so far apart as to make the whole diagnosis meaningless. When this happens, there is no support.

@BadNomad
No autistic people like my son get zero services to be helped for anything. You are carrying on the very strong but completely unfounded narrative that there is a bunch of services out there making autistic kids stop stimming.
This isn’t.

Parents like me are tired of having to fight for a scrap of help. The neurodiversity movement has done ZERO to help me fight for help for my son.

I think research ableism OP.
Also ABA therapy - I think your team are ensuring they aren’t moving towards this.

I think you and your colleagues just need to speak to parents and children/young adults and get their own personal views on what they would like support with!

Are you seeing non-verbal or minimally verbal autistics in your spaces? Why not?

Exactly. I went to a big autism conference recently. It was really smug about how it was totally by and for autistic people Not one single autistic person had communication difficulties. Not one had motor skill difficulties. No one talked about functional living, independent living, safety, safeguarding, autistic interests and passions, developmental delays, managing day to day living.

Absolutely nothing. From two whole days.

Absolutely appalling. When you think that approximately 1/3 of autistic people have communication difficulties, 1/3 learning disabilities, 1/4 epilepsy, 1/3 motor skill delays, (don’t quote me, very rough but about right!).

WHERE are these autistic people? Disappeared in our homes, with less opportunities, less help, less understanding, squashed out of their own diagnosis.

The lack of services is not caused by the neurodiversity movement, though. Yet that's who people are directing their anger at here. It should be aimed at the government. The people holding the purse. They are the ones responsible for services or lack of and they are the ones who will scapegoat ND people because it is convenient.