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 agree that NT parents speak over actually autistic adults. People find it hard to be an ally to a community without dominating the voices of those in it.

My DH is black and I am white, our son obviously is mixed ethnicity. I care passionately about inclusion and fighter against racial prejudice. The people I care most about in the world face racism. But it's not for me to speak over black voices, I don't know more than their lived experience.

Likewise with neurodiversity, I am not autistic. Everything my son finds hard I find easy, I actually do a job that heavily relies on communication and social interaction in a very NT way. Again... I love him more than life itself and I want to be an ally to the community he is part of, but it's not my lived experience. I live autism through my son. I can walk out the door alone and I don't experience racism or ableism.

I think many parents don't recognise the autistic adults as being the grown up versions of their own child. Because we haven't been exposed to seeing them at every life stage.

Haha yes I'm super social when I've had a drink, it really helps - I was far too reliant on it in my late teens/20's though. I don't have to worry about ds going that way though because at 17 he'll only drink water.

To me (and what I'm seeing from this thread) it's less about people needing the world to change hugely and more about understanding yourself and having a few tweaks from the world around based on that.

I read about a pp who said how her group of friends all understood and looked out for her so she could manage and it was wonderful for her. Personally I'd hate that, I'd feel like I had to be baby sat through everything, I'd feel no more comfortable no matter how kind and accommodating the large group were which is why I avoid going out with a larger group than 4. I much prefer one to one though as I find it difficult to juggle people and conversation! If I have to be in a large group occasionally at work I will try to stick close to one person I know well or just stick to the edge of the group. None of this needs huge change from the world around me.

I guess the difficulty is how to understand from non verbal people what they want and what is best for them. Their behaviour can tell you a lot but beyond that how do we find out? I agree that high functioning people with autism are not going to be useful advisors on this - neither I or my son would consider ourselves qualified on that. (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.)

It sounds to me like the OP is suggesting that the use of minimising language such as 'differences' is unfortunately reducing the opportunities for funding. As a 'difficulty' it's an issue, as a 'difference' you don't get/need any help. The problem isn't so much that some things are being taken away necessarily - but what are they being replaced with. Nothing?

Surely it's a well known fact that being unable to communicate your needs leads to incredible frustration and potentially self injury? PECS may not work for everyone - but is it really being taken away on that basis?? What about those kids that it did work for? What are they being offered now?

Ok I'm not profoundly disabled by my autism, in as far as I can verbalise and kind of get involved socially (in my own way with support) although i cant work, i have tried but my issues just make it impossible. Do I get to speak about how my autism affects me, do I get to talk about how my (each differently affected) children's autism affect them?
The whole point with autism is it is a spectrum, most of us look like the majority of the NT world. You can't tell that we are autistic just by looking at us. But all of us are affected in virtually every aspect of our lives and while we don't know how every other person with ASD is affected, we do have some knowledge about some of the aspects.

The services being cut is not about autism. It's about money. If it was actually about ASD, they would replace these services and programmes with ones that are more appropriate and useful. But they're not doing that. They're just using the autism community's voice as an excuse to save money.

No, this still doesn't work for my experience. I don't and wouldln't expect or want those sorts of adaptations. I don't really have much of a friend group, but I am learning things that help me develop a bit of a social life. But I'd find it arrogant of me to assume that there is something so important about being friends with me that people need to go out of their way to accommodate me. If other people have that, sure, great for them. But I simply would not expect the world to change to fit my way, when it's clearly a minority and many things are in fact irritating or weird or inconvenient or whatever. I want to be able to fit in on their terms, as and when I choose that. Some of it is making, absolutely. Other times I can change. Other times people do make some adaptations. But I don't particularly expect that, and I do feel that some aspects of myself are in fact deficits that I would like to fix.

I find the adult ND community are often the people who have very different views to me; there seems to be a prevailing view there that just doesn't seem to have much to do with me, so I would not use that for support at all and do not find it helpful - and yet, as a result, voices of people like me don't tend to be heard, because that group can predominate.

@Choconut
I'm the one with the group of friends. And I totally understand how you feel, especially the one on one thing, I find it incredibly hard work to follow conversations when there's more than one person talking (hence the need for regular breaks and times when I sit on the edge of the group). I am very aware of how easy they find it and it took me a while to accept the help and support they give me, but I do now enjoy those short doses of being included.

The thing that seems to be forgotten when talking about autistic people (or people with autism, however you want to word it, personally I use the phrases interchangeably and again think I have the right to do this) is that just like NTs we are all different. Just like NTs we all want different things and we all have different ways of dealing with the world. Do I know exactly how my children feel in certain situations? Of course not. But I do know just how mentally and physically exhausting it can be to try and mask all day. I know that no-one with autism wants to have a meltdown, I know how scary that completely loss of self-control is, I know how absolutely exhausted I am for days after I have one. I know how hard it is to see things come easily for NTs, things I desperately want to do, but simply can't force myself.
I know the looks you get when you are doing something that the NT world deems inappropriate, like vocal ticking, headbanging, scratching yourself. I know the feeling of actual pain when walking in to a noisy atmosphere. The pure panic for days leading up to an event. Knowing that i need to keep my mouth shut when everyone is talking about how sad they were the Queen died because i feel absolutely nothing, i didnt feel anything much when my Dad died, why should i feel sad because someone I never met died. I know how my autism affects me and have just about enough empathy to realise that others with autism may have the same problems to a lesser or greater degree. So I realise that someone who is far greater affected than may well be finding the situation I find difficult totally overwhelming.

Exactly this. I have a high functioning 19 year old. Off into the world independently, with lots of good tools to navigate NT-world.
His diagnosis helps him understand why he needs to stim. His high functioning has long ago made him aware that people find his stimming peculiar, so he stims when he feels comfortable/alone.
(hand flapping, running and jumping back snd forth. Pretty innocuous, but he is a 19 yr old lad, so it looks more Odd on him now than when he was younger).
We have talked about the importance of taking «time off» after socialising, because we do Get very tired from it, but we do want to belong and participate. There is nothing wrong with him. But we must modify how we live.
my youngest is low functioning. Will not live independently in the world. Will need help and care and support to communicate. It us extremely important to her. The frustration when she cannot Get her point across is clear, so is the joy and relief and Pride in herself when we do communicate well.

so no, it does not happen by itself. It must be taught.

Even if we are not making a distinction between ND and NT people
Why would you want everyone to conform and fit in.

Why do you think that getting a job and living a lie is what people should do to fit in and be a functioning member of society
Why the need to fit in when to do so would make someone deeply depressed and end badly

What else would you deem people do to change themselves to fit in

Who gets to describe what fitting in with society looks like.

Being ND doesn’t make you not a member of society

As for role play. It is toe curlingly awful in what ever capacity you try it and the scenarios never fits in with real life.

Because communication is easier for neurotypical people. Apparently you can readily understand tone of voice, facial expressions, subtext, body language, figurative language, can communicate well by phone, can interpret ambiguous statements using contextual information and usually be right, and so on. Many (most) autistic people have trouble with at least one and in many cases most or all of those things. Why should we have to be the ones to adapt our natural communication process when we have difficulty with communication by definition?

But who are They

What other groups occupy the They in terms of not fitting into your societal norms.

People with ADHD or other ND labels People with disabilities.
People with MH issues
People in same sex relationships.
Where does the They end and society begin.

Or is it just people with Autism that has to be othered in your eyes.

You can't teach a young child with ASD that "This is orange. Say orange". If they get it at all, they might never generalise that understanding to everything orange, but think you mean that felt pen must be labelled orange. this isn’t my experience at all. In fact colours were entry level to communication in our experience.

I think the post earlier about waiting for the world to change is pretty spot on. It is changing, but not at a pace that means every child teen (and adult) with autism will be able to reach their true potential.
It's interesting that the OP talks about not being able to document "communication difficulties" , instead must state "communication differences". Yet in many of the posts on this thread by people with ASD, they do mention communication difficulties or finding communication difficult.
The cruel but stark fact is that right now people with autism (or any type of ND) need to be able to function in a world built mainly for NTs, so they need a "toolkit" of how to navigate this. Not by not being themselves, but as an earlier poster beautifully put it, trying to round off the square edges a bit.

My DH is black and I am white, our son obviously is mixed ethnicity. I care passionately about inclusion and fighter against racial prejudice. The people I care most about in the world face racism. But it's not for me to speak over black voices, I don't know more than their lived experience.. But in this scenario you would be talking over (though I think it’s more being allowed to talk at all) someone who had “passed” as white and in some cases hadn’t even known they weren’t until they were adult. Would that individual know more about receiving racism than someone with a black partner and bi-racial child?

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.

well with this new definition that it's all 'communication differences', then you don't have to. It's up to the person whether they want to communicate with those that do it differently, or not. If they are equally good ways of communicating, then people can equally learn the other person's way, because supposedly one is not easier or better, it's just more common...

It sounds silly to put it that way, because for many people, it's not true. There is a communication difficulty in that it IS harder, not just a difference, and there's no shame in that. I don't see why giving that person the tools to try to understand the rest of the world is such a bad thing.

I also wouldn't want all communication to be adapted; there is a huge richness to communication with tone of voice, expressions, figurative or poetic language, amusing ambiguity etc. As it happens, I don't find those areas difficult at all; my diversity is more sensory or anxiety based. I know that others do, and there are times when adapting language is very helpful. But much richness can be lost at the same time, and sometimes learning to understand what people are saying in that way can be beneficial or even enjoyable.

Exactly this. You can go off on one firefly because you don't like my opinion but giving ds the tools to achieve what he want to achieve is important imo. He wants to be with his friends, he wants to go to uni. He wants to work for the UN. He is 15 and well able to articulate what he wants(in 3 different languages). Giving him the tools to achieve these things hopefully means that even if the world doesn't change in the next few years he will still be able to achieve them. Like I said in an ideal world sure things would change but what is ds supposed to do in the meantime. You say you are 45 with no career? Ds doesn't want that for himself, he has seen first hand with dhs relative what happens if you opt out and sit around waiting like Cahms advise. If he can and is willing to learn how to best manage in the world he is actually living in shouldn't he be given the opportunity to do that?

Since we got him help privately I have never seen him happier and more self assured. He has the confidence to know that he can travel 30km away from us alone, navigate buses, navigate ordering a coffee with his friends, navigate shopping etc He can go on a 2 night sleep over at his friends house and come home tired but so proud of himself. Sometimes when he is going off to do something new he looks like he is off to face a firing squad but when he comes home having done it he look like he has won the lotto. Getting help, learning how to manage his overwhelm has allowed him to do this. It's hard, no doubt but for ds he feels it is worth it and it is always him driving it. I am listening to an autistic person, I'm listening to my son and I am responding to his needs.

I understand what you're saying, what they would know is different. My son was diagnosed autistic at 2, he has a different profile to someone getting diagnosed at 45, but that doesn't mean I wouldn't listen to their experiences of feeling different and struggling.

Exactly.

A lot of people are getting tied up in knots about ASD but in reality (as another SLT in the NHS) services are being cut left right and centre for just about everyone.

Dementia - send an info sheet.
Stammering - redirect to a website and tertiary centres.
Stroke - don't do much rehab, all about the 'functional skills' you have retained.
Dysphagia - no therapy, texture modification and discharge.

Some is ok, some not. It's happening across the NHS.

@sunshineflowerdaisy I don't disagree at all about it being about budget cuts and saving money.
But, look at all those on this thread who seem to agree that interventions to support those with ASD to communicate in a NT world are not right? I think there are issues from both sides.

I am NT, I had SALT as a child, and I feel the same way as @SideEyeSally and I think learning how to mask so you can choose to do it in some situations is an essential survival skill. I want a rulebook of social norms so I can fit in and make friends and not draw attention to myself and communicate effectively.

I also wonder if you have considered opening a private practice so you can help people in more depth using the approach you prefer?

My son is on the three year waiting list for SLT in my area and I will be mightily pissed off if we get to the appointment and they refuse to actually help him because of some bullshit ideology that only represents people who shout the loudest and therefore don’t need SLT help.

Arrgh I am ND not NT. Stupid autocorrect

A family member of dhs with asd was taught by his shrink to parrot 'I don't feel comfortable with that' to anything he didn't want to do because the world should change to accommodate him. So at 16 he didn't feel comfortable at his school anymore and left. He didn't feel comfortable doing anymore education anywhere else. He didn't feel comfortable finding a job. He hasn't felt comfortable doing anything but sitting in front of a computer screen for about 6 years now. A smart person with lots to offer but given no support at all because the world should change for him. So he sits in his room waiting for the world to change

Did no one offer him alternatives. To look around at what he might be interested in instead of just leaving him to figure it out all on his own.

I think this is where teaching children to conform to the NT misses the opportunity for the ND to play to their strengths.

My own Ds is ND and has social anxiety.
He sits in his room on his computer but he learns different things that take his fancy or have suggested he looks into.
His income comes from online working. Stuff he can dip into and out of He can spend weeks on one thing, then he switches to something else, then something else, then back to something he has done before.

It isn’t 9-5 type work and it’s not everyday but he is slowly getting better at things and he likes when he profits from something and sees the money in his account.

Whilst building his confidence in working we are slowly tackling his social anxiety

Only read half the thread but OP I think I get what you mean and agree. There seems be a suggestion NT kids do not need to learn social skills, how to play cooperatively, learn how to speak, how to behave etc etc and therefore somehow to teach anything to autistic children is ableism. That autistic children do not need to grow and learn, to benefit from guidance and therefore any attempt to do so is forcing them to mask and not be their 'authentic selves'. ALL children need to be taught skills.

As for leaving children unable to communicate because they have 'communication difference', sorry but how dare people suggest their 'lived experience' is sufficient to deny the help my child needs! My child had five sounds at 2. These cries of 'ableism' would have denied her investigation and treatment for glue ear and verbal dyspraxia because 'it is her authentic autism'. Her meltdowns were not sensory or masking, they were frustration at inability to communicate. Fortunately we could afford private SALT to overcome this - which she loved going to.

Now she is at the top end of primary I am sure these same voices would tell me I must give into her demands, that her NT brother must learn to live with the house laid out exactly as she wants because autism. No, it is OCD and accommodating these things harms her by making her OCD worse.

Children with autism are still children. They still need to learn stuff and be taught it. They are still affected by other conditions. And they still need to live in the world as it exists.

This in bucketloads.
And just because some of us with autism can manage to function independently and hold down jobs, doesn't mean that our autism is 'mild' and easy-fucking-peasy. What people don't see is the struggle that goes on in our heads, all the coping mechanisms we have to put in place just to function in a way that's socially acceptable, or how we beat ourselves up because we fail like failures.
Oh, and the whole concept of people shouldn't treat us as if we're special (as PP's friends apparently do) - it's not treating us as if we're special, it's treating us like human beings with feelings! PP's friends are obviously decent and value her. That's what decent people do. You wouldn't refuse to make accommodations for a visually-impaired person or someone in a wheelchair - you'd do it because it would be the right thing to do. So why does being autistic seem to mean that we should have to struggle?
(This thread is yet another frustrating one)

I disagree.
several here have stated they are nd themselves and STILL want help with learning skills, including communication.

several have children on different parts of the spectrum, and it is clear that the help needed and the level of skills they can learn is vastly different depending on how their autism is.
many of us are very worried that the hard fought for support will go away, because of the loud voices saying we should just accept all nd behaviour and accomodate it, rather than teaching the children skills they are able to learn so that they can have as much independence as is safe for them.

licking the tiles in the supermarket is not safe. Not being able to communicate if you are in pain is not safe. Not caring whether you are dressed or naked regardless where you are or with whom, is not safe.

by all means: advocate for high functioning verbal autistic people, but do not let that take away from the ones who both want and need other kinds of help and care.

When reading this thread you have to wonder if ASD is a useful diagnosis at all. The Spectrum is so broad. Especially now that things such as severe, low functioning and high functioning are deemed unacceptable to say by some. The reality is my DS experiences are just that my DS experiences.
DS was a late talker and we followed the HANAN approach. Do people really think this was me teaching him to mask. He was like a new boy when he learned to talk. Finally he had a way to really share his inside world with those around him. Before he learned to talk communication was far more needs based. If he was thirsty he might bring me to the fridge and guide my hand to what he wanted. Or other times he would meltdown and I had figure out what was wrong and I didn’t always get it right. We don’t buy into eye contact being necessary for communication a teacher in early days mentioned it and I knew from reading experience of others that many found it distressing so I told the teacher this.
When my EX wanted us to do something about stopping DS from stimming again I knew from reading of the experiences of others that this was not a good approach. One person’s account broke my heart. The way they stopped hand flapping was by repressing their excitement (they flapped when excited like my son does).
I am not ND as far as I know. I do know my child though. I know when he is struggling and when he is happy. I know he wants to travel the world, live in different countries and although his future career changes all the time he is keen to go to university and get a degree in science. I see my job as his parent to help him reach his potential whatever that may be, teach him skills to make managing the world around him easier.
In everyday life NT people can make some allowances for their ND friends and family. However, they can do this because they know that individual. I can’t use my experience of DS as a roadmap to how to treat autistic kids or adults in general. Realistically there is only so much NT people can do because the spectrum is so broad and the needs of the people within the spectrum are so varied.