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?

Further, since I didn’t understand social codes and some rules for interaction - and because I «switch off» (and have meltdowns later) for YEARS I put myself in unsafe situations, lost important work opportunities, wasted years with «depression» which was wrongly medicated, and - extreme I know- nearly got killed.

After I started to read and learn coping mechanisms, how to «manage» myself according to the challenges I’ve had, things improved. Strangely, having a severely autistic and LD child has saved me, because I simply do not have to try and function socially to the same extent because she needs a different rhythm in life.

Also, NT people helped me and us to a huge degree.

This «only an autist will know what it is like to be autistic» makes me think No Shit Sherlock; but that doesn‘t mean that other people cannot contribute meaningfully to the discussion.

I totally agree @Crunchingleaf. I'm ND (ADHD, not ASD). I have reasonable adjustment at work so I can do my job, but my job is still extremely fucking hard because I have to work in a NT system. I can just about cope, but to do so I need strategies, a toolkit.
It's useful for those with HF ASD to be able to explain how they view and interact with the world so others can begin to understand and adapt, but their experience will be very different indeed to those with significant communication and functional impairments, who without support would not be able to cope and would to put it bluntly be unsafe.

And please don't police my language here because nobody asked me or my ds's opinion when they did the poll that decided what the 'autistic community' does or doesn't say.

When I hear people reference the 'autistic community' now I think 'Borg': You will be assimilated. Just one opinion is allowed as the true opinion of The Community (though what is the right one does vary depending on who is quoting The Community). This in no way reflects the diversity of opinions I hear from autistic individuals in real life - some of whom prefer to be called individuals with autism, aspergers, on the spectrum - and quite a lot call themselves 'aspie'. In reality the 'autism community' is a specific online community that regulates it's membership and the language it uses. Disagree and, like many autistic individuals I know, you will be forced to leave. How this community operates is similar to other social media groups that become echo chambers and is result of how the Internet operates.

The autistic “community” seems to involve an awful lot of policing and heckling, vetting and excluding….tedious.

The reality is no one really knows what is right with regards to asd.
Some new bit of research will appear and a clever marketing team will promise its the magic wand everyone is looking for.

Programs need funding and what do they base the funding on?

If this years experts feel doing nothing is best, then funding will be cut.

Its wishful thinking that the world will change for anyone who is different.
It's never going to happen.

The masking no masking has gotten a bit ridiculous.
Every masks. everyone.
We do it to fit in different environments. It's normal and part of human survival.

Nothing really just comes to people. Everything is learned through modeling, trial and error, explicit instructions.

Both my sister and I are autistic. I'm also deaf and have adhd and ocd.

Deaf people are treated like shit. It used to make me furious and go off on people.

Going off on people meltdown really isn't acceptable.

So now I decide if I'm talking or listening to people or not. It's stressful to try to read lips.
Forced eye contact having to stare at people's mouths.
If I don't feel like it, I'll write a note.

So what I'm saying you that work in this area will never find something that will tick all the boxes. Government programs by design want that.

You can argue as much as you like about right ways and wrong ways.
It doesn't matter at all because nobody has any secret knowledge or answers to this.

@MangyInseam
Do you speak for the deaf community?
We adapt everyday for hearing people. Having Clear speech is actually a disadvantage as even our own families rarely realise how hard we have to work at lip reading and guessing the conversation.
Having clear speech is pure luck and regardless of if speech is clear or not we have all been through countless hours gruelling and unpleasant speech therapy.

My childhood was full of struggles and therapies and believing i was broken as a deaf person. Trying my best to hide my deafness. Not once was I given BSL but this would have actually helped me.

Finding BSL and the Deaf community is life changing and I am proud of my identity and language.

The issue here is NT thinking they know ND and what is best for them. Autistic treatments have left many adults with trauma and not the benefit others perceive. While my speech may be more appealing to hearing ears it wasn't worth the trauma it created but I am seen as an oral success in hearing peoples view. You may believe the treatemnts to make Autistic more like you are great but you dont get to feel the impact on autistic people.

Schools are not inclusive to many people with differences. in fact they likely only cater for 1% the joe blogs average person. There are many ways that schools could change and work for all. Univeral learning for all concept is very interesting.

Many children will benefit from strategies that improve communication. BSL, English, PECS, Brail, ACC, colour overlays, ear defenders, stress toys etc should just be used and available for all. Who knows which children will find things that enhance their lives.

I find that even with the forum here for ND people. I occasionally stray in there and usually come right back out. It doesn't reflect me or my views on things and isn't a place I'd want to feel like I belonged. Others are so happy that it is there and get support from it. There are many very different perspectives out there on how/whether to interact or fit in with society, and some of the ones that are becoming most prevalent and known about are not necessarily ones that resonate with me.

I have not read the whole thread. I am sorry. However, is this really a matter of funding and resources? That is to say, are 'experts' now saying, 'Hey, you're neurodiverse. That's cool. You don't need support; the rest of the world just needs to accept, include, adapt a little!'

If this is the case, then many, many more people will be let down. The people will be let down not because they are ND, but because the world is not inclusive and accepting. My eldest son needed visual supports because he could not communicate effectively or quickly enough to make his needs known. He still needs to signal to others to give him time to process information and to formulate a response. He needs therapies for his autism and for his serious mental illness.

Yes, we should accept neurodiversity, but I think these cuts to services are not primarily based on greater acceptance and inclusion; they are based on finance

Thank you for saying this! When I see in Facebook groups everyone arguing about wording and what the "community" has agreed on I'm struck by the thought that no one has asked me, or anyone ND that I know. I certainly don't feel that being ND makes me part of a community, and I wouldn't want to be a part of a community that polices the language you use to describe yourself anyway!
Borg indeed!!

I've just remembered why I deleted my old account, I have no idea why i signed up again!

This is really sad and worrying
it sounds like what was being offered wasn’t always quite right but to take that away completely and not replace it with another approach is not right either.

as a mother of one (possibly 2) autistic dds, no I don’t want them to be who they’re not or be encouraged to mask in a way that’s detrimental to them. But part of me also feels they need to exist in this world and so it might be helpful for them to practice and be equipped with skills to help them survive/get on.

As far as the allocation of resources goes, my observation is that the resources available to classic (Kanner) autistics high or low functioning (that is with or without LD) are now shared with a larger group including Aspergics and self diagnosed adults, and that flubbery edged group “nd”, and on the whole the less verbal and less able are now receiving little or nothing. Their situation was always more extreme and the consequences of not receiving support always more terrifying.

@5zeds I'm not sure what resources formerly available to "classic" autistics you believe are now being shared with a wider group of "Aspergics" and self-diagnosed adults, but I assure you, there is almost zero support available for any adult who would fit the latter category, and precious little for children and young people in that group either.

Services to help autistic people with high support needs, non-speaking autistic people, or autistic people with learning disabilities (and their parents or carers) are not set up to provide assistance that is useful to adult autistic people with low support needs, without LD, and who can speak — that's never what those services have been for, and should not and cannot be what they are used for.

I don't understand how you think those resources are being used by adults with low support needs and inconspicuous communication difficulties. It's true that there's some very, very limited assistance coming from other pots for that group, but often what's asked for is things like adjustments from private organisations.

If a "high-functioning" autistic adult does, say, manage to somehow get a grant from Access to Work, and at the same time the government cuts SALT provision for non-speaking autistic children, it's unfair to blame the autistic employee for taking the children's resources, even if the government justifies those swingeing cuts by pointing to that piddling A2W grant as part of their spending on autism.

Autistic adults who generally seem to be sort of coping don't get a lot. Sometimes actually less than the standard NT person — even things like NHS mental health services that everyone is supposed to be able to access can be blocked off to you, if you have an ASD level 1 or Asperger's or high-functioning autism diagnosis — mainstream services will tell you they can't meet your needs because of your autism, but there is no service for autistic people in that category who have no LD.

When it comes to campaigning, awareness, public understanding of what ASD is — yes, I think some of the public discourse around neurodiversity is not reflective of the reality for many autistic people, and privileges a certain type of story from a certain type of person.

It's understandable that, since there's a whole subset of the autistic population who have a subtler presentation and have only been properly identified in the last thirty years (Asperger's syndrome entered the ICD in 1992), a lot of public attention would go to this "new", more numerous group, and especially, to the most extreme versions of the new conceptualisations of autism some of them put forward (since the extreme versions of things always get attention). And radical neurodiversity proponents who would advocate for abolishing all interventions to help autistic children communicate with the NT world would be the very extreme end.

I think it's playing into the hands of Tories and cost-cutters to blame either autistic activism, or high-functioning resource-hoggers, for the appalling cuts in services for autistic people with very high support needs and those who look after them.

PMK

@FurryDandelionSeekingMissile i don’t agree but I’m not sure where to start really. For example a lot of public attention would go to this "new", more numerous group except they aren’t as far as I’m aware more numerous they are just louder, often refusing space to the indigenous population as so many invaders have before. How has the inclusion of aspergics and self diagnosed helped autistics (whatever their iq)? The resources I was talking about are for example support groups and local authority activities which are now almost entirely populated by a small subset of new style autistics many of whom are fiercely protective of their position and like cuckoos push their less able autistic natives out. Few understand anything about the lives and experiences of more classic autistics and have no intention of finding out but STILL want to be the only voice in the room.

It’s not about blaming more eloquent autistics it’s about describing what is happening and refusing to politely slink away.

There are of course those with severe language disorders associated with ASD without cognitive impairment but in my experience (limited I do admit as I have not worked much in disability) they are clinically rarer.

My son had almost zero understanding of language (not even his own name) and only 10 words (non functional - numbers) at age 4 years. NO services offered after his official diagnosis at 3 years. If I had not given up my job and helped him, I’ve not idea what would have happened to him. He was labelled with learning disabilities - (which is fine he does have these) - which the neurodiversity movement won’t touch with a barge pole. It’s seen as ‘not autistic’ but most autistic children do have significant learning disabilities.

In reality my son was very able but had not been given the tools. I taught him basic maths myself - and now he is on par with his peers. He had to be supported to do this - with specialist ways of getting his interest and engagement, doing it in very small steps. No way could he get this from a school or the environment as it moves too fast for him.

He couldn’t use a spoon or be toilet trained until very late. Again - this is not something he would have just ‘picked up’.

This is the absolute tragedy of less services, less quality services, and the very strong wave of neurodiversity which says ‘just change some of the sensory environment but don’t help with anything else because you will be labelled harming’. That so many kids I believe have these abilities to function.

I do blame services AND the neuro diversity movement. I had hoped that the movement would be positive but in reality it’s turned into a very influential group who only see autism through the lens of adult functioning, talking people. And who cancel parents and services quite fervently. This is not a minority people!

@5zeds completely agree. I’ve started to join some forums just so that I can speak up for autistic kids who aren’t ‘as able’. And it’s shocked me even more, most of the influential forums don’t have a clue about ‘classic’ autism. Absolutely no clue and yet they have all the power and influence of services and research on ‘classic’ autism. They are not just pushing any ‘severity’ of autism out - I don’t think most of the movement is really even aware of what it is anymore.

Name changed as I do teach children with autism, from those who have barely any communication skills and significant learning difficulties to those who could be in mainstream but they need a lot of support with their emotional regulation skills. (Autistic and 'with autism' is interchangeable esp in our setting where we may have children with other diagnoses too. We also have staff with autism.)

I do agree with the OP; I appreciate that it's exceptionally complicated however. It's hard for you to communicate the wider implications of what you've been delivering for years and why, verses reducing this provision. Much of what you do supports what they'll access at school.

When I first started teaching in my setting I didn't appreciate how much sp and Lang contributed, nor even the OTs.

Yes we need to be flexible to individual need (the OTs are helpful here and we follow certain teaching approaches v different to mainstream- eg one of my pupils spent most of the year playing acid house on his keyboard before he started to join in my lessons. He eventually went to a mainstream school with a unit and did amazingly well!) but educational settings currently do have a focus on social interaction and communication, emotional regulation and the way staff transactionally support these (many places are following SCERTS)

I am concerned that I've seen a reduction over the last 10 years in both ratios for some cohorts as well as salt and OT support. My niece in the USA is autistic but wasn't diagnosed in order to remain in the mainstream system. The amount of salt and OT input she had (via health insurance) was staggering in comparison to what my pupils get access too.

Class sizes are much bigger here too.

Keiran the autistic advocate is good to listen to; he also is very clear that autism is a disability and shouldn't be seen as anything other than.

So many things at play here (hence so many differing - and quite heated - opinions)

1. Underfunding and lack of understanding. The terminology and diagnostoc criteria change regularly. Some old school psychiatrists use the old diagnostics. This means some children and adults will slip through the net / be misdiagnosed / given incorrect support and coping strategies.

1. Not all ND people present with the same symptoms / traits. This is fairly obvious. There are 3 recognised levels now. Yes, it's a spectrum, but some comments I've had directed at me personally (and seen on here) like "We are all on the Spectrum" are simply unhelpful.

1. It's unhelpful to alientate a group of people who are disabled (and some have physical disabilities as well as ND issues) It is not a competition. Sadly, I've seen more than one post about how NT kids and adults are being dismissed as they "aren't disadvantaged" Always remember that if you are able bodied and NT, that while you will experience difficulties in your life, would you trade your job with a pittance of DLA or equivalent financially while also taking on board the disabling element of not being able to work due to crippling conditions you wish you didn't have?

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.

5zeds if you're comparing the number of people who would've received a classic/Kanner autism diagnosis in the 80s and these days get an ASD diagnosis, with the number of people who would fit in your grouping of "Aspergics", self-diagnosed people, and the big broad church of ND, then I'd be extremely surprised if the former group was bigger.

The reason Asperger's syndrome was absorbed into autism in the DSM 5 (and I think ICD 11) is that it was determined that the only substantive difference between people with Asperger's and people with high-functioning autism was the existence or lack of speech delay in early childhood, which, in the support groups and activities you're talking about, would be increasingly irrelevant with increasing age.

If it's true that in your area, support groups and local authority activities that were previously set up for and used by people with "classic" autism and their families are now inaccessible or unhelpful for those people because of an influx of people with low autism-related support needs and people who've seen a TikTok and decided they're #actuallyautistic, then that's a problem, and either criteria should change or additional services should be provided.

I understand to some extent the frustration you're talking about — a similar thing has happened with public discourse on mental health, where a lot of time and attention and resources are pushed into restoring the economic productivity of people with mild-to-moderate depression and anxiety, while people with, say, schizophrenia, are ignored as much as ever.

I find your language a little odd, though, talking about invaders and natives and indigenous autistics. I'm unsure what you're trying to say. It certainly sounds like you're blaming this group for the reduction in services, presumably including the SALT provision the thread is about. But I don't see how that would work for SALT in the way you're saying it does with your local groups. What OP is describing with the SALT provision and similar services is far more likely to be cost-cutting with neurodiversity concepts as an excuse, rather than self-diagnosed or "Aspergic" toddlers invading Autismia, claiming the territory, and pushing out the indigenous Kannerite natives.

Changingmames20, great post and you're an amazing mum! I'm so sorry you were let down so much.

I have a pupil who's autistic and fairly able (MLD) but also has a very challenging speech difficulty. I can't believe he wasn't given a talker earlier. He finds it so complicated though that he's been using pecs more again recently. It's so frustrating for him. When he's calm he's so focussed and works so hard. When upset and frustrated it's so hard to help him and he'll loose the whole day. It has impeded his ability to play with his peers too as they've matured.

There are of course those with severe language disorders associated with ASD without cognitive impairment but in my experience (limited I do admit as I have not worked much in disability) they are clinically rarer. are they? My understanding was that all iq levels were seen in this group and while there were more autistics with LD hi IQ individuals were not a rarity.

changingnames20 one example of that was the reaction to that genetics study. Loads of adult/self diagnosed autistics condemning it out of hand. The 'autism community' demanded it be shut down. They completely disregarded the fact that autism is a feature of many genetic conditions - conditions that come with a range of other features including intellectual disability but also cardiac abnormalities, feeding or digestive issues, epilepsy etc which could all benefit from early identification and sometimes this may be life-saving for the individual. My daughter has a genetic condition and when identified the first thing the geneticist did was refer us to cardiology. Without the genetics we would have had no idea she was at risk of heart problems.

i think if their are limited resources there are always going to be tensions. I don’t really understand why eloquent autistics would want to stop less verbal autistics from being represented in discussions.

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.

Imo the problem isn’t whether nd people should or shouldn’t learn particular skills, or nd social conventions, or whom is best equipped to advocate amongst/ for nd people. It’s the fact society as a whole views us as a homogeneous group.
Yes perhaps a small variation between rainman and a small child in full meltdown, but otherwise we’re often judged to share similar personality traits, let alone any understanding that nd itself is a huge spectrum.

The important thing is why any nd person is learning something. As the mildest and least controversial example I can think of, it’s important I use coping strategies to control my overwhelming impulse to run with my shopping trolley and skid at speed the full length of supermarket aisles. Not because nd societal norms dictate 41yr old women don’t do that shit, but because I might hurt someone. And if I couldn’t control myself, or I found masking my impulse more distressing than avoiding the situation entirely it would be reasonable to limit myself to baskets and online orders.

Of course, most situations are far more important and complex, and don’t usually have a clear cut choice between two simple options. But the basic principle still applies, why are we doing it and is the outcome beneficial for that individual? However that won’t happen as long as there are assumptions we’re all basically the same person with variations on where we max out on a bizarre linear development chart that doesn’t exist.