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 am shocked. If it wasn't for PECS then DS wouldn't have learned to talk. He went from non-verbal to full self generated sentences using the PECS modelling. He also learnt to play with his siblings and peers by learning to play with adults first. He enjoys this connection with others. He is not forced to not be himself, he plays in his own way mostly, but he is encouraged to try things that he would initially not do due to fear, anxiety and lack of confidence. He is also given opportunities to feel positive about his achievements. DH also has ASD and didn't have enough intervention as a young child which affected his whole life and self confidence.

I tried to get support for my teen with ASD. SALT wouldn't see her, even to assess, because she was verbal. A private SALT, commissioned by the LA, saw her and deemed her 'average'. In fact, she had scores on the 98th percentile in some areas and the 0.4th on others. I complained. Finally, she was reassessed by another SALT who specialises in ASD and she was diagnosed with an expressive language disorder and given therapy, with that added to her EHCP.

I tried to get support for my older teen with ASD and LDs. I was told she was 'fine' because she'd reached 'Blank 4' level (could answer 'why' questions). I insisted on a Speech and Language assessment. She has a severe expressive and receptive language disorder, on the 0.1st percentile for both, and only understands language at a sentence level. She now has SALT in her EHCP.

My children need help to navigate the NT world. If they have the skills to do that, they can choose how much they engage with it. Without those skills, they are locked out from it.

How far do we go with 'acceptance'? My DD went to special school. You can't tell me that children licking windows (literally, not metaphorically) and being completely unable to communicate choice is something to embrace? You can't tell me I did wrong by wanting DD1 to be able to attend to an activity for more than 30 seconds at a time?

I want DD1 to have choice about where she lives, with who, and what she does. Even after years of specialist education, that will be severely curtailed by the difficulties she has interacting with wider society. She will be a danger to herself and others if left unsupervised, and will be in danger from unscrupulous members of society due to her vulnerability.

People like me???
Oh you mean someone who has lived their whole life being autistic and trying to fit in to an NT world. Someone who actually knows how mentally exhausting and damaging it is to try and fit in. Someone who, had there been allowances made for her "wierdness" and odd behaviours, could have had a career. Someone who always desperately wanted to be normal, who didn't realise that her differences were something that could be embraced.
What seems to be forgotten in these conversations is that a large number of the now vocal ND community are women in my age group. We weren't diagnosed until late adulthood, the double whammy effect of the Rainman idea of what autism is plus "autism doesn't affect girls".
I spent 45 years knowing I wasn't like everyone else, desperately trying to be like everyone and yes wanting to be able to socialise like everyone else. I was diagnosed with various types of depression along with social anxiety disorder but never autism. I was medicated which didn't help, I learnt to hide my stims, to make it appear I was looking in people's eyes when they talked. I kind of know the constructs of conversation, only kind of, never quite know when it's my turn to talk, when a conversation has moved on etc.
When I finally got my ASD diagnosis 5 years ago aged 45 it was liberating. As the person who diagnosed me said, there's inherently nothing wrong with how I am, it's just the world is designed for NT brains and I'm just not wired like that.
Now I have my diagnosis, I've embraced who I am. If I need to stim, I stim (I still remember being thrown out of a job centre 20years ago because my stimming was "making people nervous", thank god that's improved now), if I need to put my earphones in I put them in. I no longer force myself to look People in the eyes.
I'm lucky I have a group of friends who know I'm autistic. I get invites to things and they know that just because I'm on the edge of a group or sitting quietly in a corner that doesn't mean I'm not enjoying myself. They know that sometimes it all.gets too much, they see the signs and help me.remove myself until I feel.calmer.
This is an example of the NT world "changing" to be more accessible to me a non-NT. I can still be myself I don't need to add to.my stress (and distress) by masking. But it's taken education on my part plus the whole group (all of us including me) working out how I can be included

At least it will actually be autistic people speaking for them instead of clueless people without autism who don't understand that forcing someone into years of masking (just so they fit in nicely and don't annoy the nice NT people) can have a really crap effect on your mental health and self-esteem in later year!

One thing that always becomes clear in these types of threads is that a lot of NT people don't think autistic people who can speak are autistic enough to talk about autism and therefore verbal autistic people should shut-up and let non-autistic people speak for autistic people who can't talk.

I really wish there was a like button on here.

What a lot of people don't realise is just how many ND people self medicate, whether that be drugs or alcohol. Alcohol really, really helps me deal with the NT world, when drunk I can deal so much better with socialising and the ADHD part of me really likes recreational drugs. Luckily, I really like to exercise (it's my hyper-focus) and know that is a really bad road to go down.
Then there's the depression, I was medicated by the doctor for decades, now I embrace who I am.i haven't had medication for years. I no longer have the stress (it's not stress exactly but that's the best way of describing it other than being like a pressure cooker) of holding in my stims, trying not to have meltdown, staying in noisy environments etc., so I don't need the antidepressants in the same way.

There have to be limits to what we allow in terms of anyone’s preferred way of communicating, limited by a basic need to keep everyone safe. I’m currently working with a child who’s preferred method of expressing his frustration at not being allowed to do what he wants is to throw whatever is in his vicinity. Last week it was chairs, thrown without regard for the five year olds nearby. We could say he should be able to do what he wants all day, but that isn’t how schools work, it just isn’t. If we want schools that work that way, allowing everyone to follow their own interests, then we (as a society) need to invest in them. But it’s not going to happen. So in the meantime we need to keep everyone safe in the schools we do have.

Surely like most things in life the truth is in the middle. People shouldn’t be forced into a certain set of behaviours or way of thinking but strategies to cope with situations and enable better communication will benefit some. Everyone should be treated as an individual and society should be far more accepting.

This bespoke approach would be more expensive so it’s easier for the NHS to operate at extremes. The cheapest extreme is to basically not offer anything, which according to the OP is what they are wanting to do.

I do seem some of my difficulties as deficits, not differences. I want to be able to fit in. I also don't see why the world should change to accommodate me. What makes me so special? If I want to have friends, I need to find a way to deal with the situation and people in front of me. I don't expect anyone to particularly go out of their way to include me or change how they interact just to suit me - I personally would feel arrogant somehow, to think that my potential friendship or whatever was so important that others should want to see past my anxiety or weirdness or annoying traits or just lack of convention or conversational skills. I want to be able to be like other people and to fit in naturally, and yes, that might take a lot of work on my part and a lot of masking, but I also gain from it so it's worth it to me. And I'd need skills and teaching to be able to get there. If there were adaptations the world could make that affected absolutely no-one else, then yes, that might help. But realistically, that's not the case, and I don't see why anyone else would need or want to change for me. Other ways of interacting might be the norm, and if my language style or behaviours are different, I'm not easily going to fit in. I can choose to stay like that or I can choose to change, and both options are avialable and suitable to different circumstances. I think people who dont' want to change to fit in have that right, and there shouldn't be any recriminations against them for doing so, but they don't speak for everyone. And I'd be concerned if this then leads to reduction in services for those who do want a different way.

Some people (adults and children with ASD) prefer to be called an adult/child with Autism and the others prefer autistic child/autistic adult. shrug

It doesn't sound like it has to be ABA to me. There are plenty of other approaches that allow an ND child to 'fit in' without making them robotic or 'trained'. You can support a child with change in ways that help them choose how and when to communicate, be social etc so that they have the skills without necessarily resorting to behaviourism. I would have appreciated empathetic, gentle ways of teaching skills, rather than either extreme of forcing 'normal' behaviours, or ignoring and assuming 'all was fine as it was'.

I hear you, OP. I tried to articulate something in my workplace once regarding working with people who have a range of disabilities that affect their abilities in cognition and social aspects and so on (I was trying to articulate that a person with Downs Syndrome might have very different needs to one living with autism specifically) and I acknowledged that this not being my specialism I was unsure of the appropriate language or politics inherent in this and, predictably, I was shut down with 'the phrase you are looking for is neurodiverse'. I asked if this was a catch-all for every individual who was not NT and I was told 'yes'. Further questioning was impossible because so many researchers and many practitioners in this field are from 'lived experience' backgrounds and if you are not someone with 'lived experience' of being ND or caring for someone who is then your view is worth fuck all - and let's face it I get enough flack for believing in biology as far as sex goes, so I figured I'd bow out of that conversation.

But I did think at the time that those with more language capability and ability to articulate their specific needs (or the parents who frequently do this ostensibly for them) seem to have the voices that are the loudest and most heard and that one reason for this is that services can become bland and one-size fits all and thus cheap.

But the whole point with autism is we can't actually change, life would be so much easier for us if we could. We can learn coping strategies, but finding socialisation easy is quite simply not something that is ever going to happen. It really isn't a case of fake it till you make it, I've been faking to extent or other for 5years and I still haven't made it. Every social interaction is still a minefield of not quite understanding the rules, of trying to differentiate one voice among many, of staying silent at the edges of a group because I'm not sure when it's my turn to talk, of not knowing whether what I want to say is appropriate or whether the conversation has moved on so not having a voice.
What has made my life and attempts at socialising easier is when the group (or at least certain people in the group) knows I have these difficulties and then makes adjustments so that I can be part if the group.
I was at a party this weekend (would have been unthinkable a few years ago despite desperately wanting to do this type of thing). Everyone there knew about my social issues and almost everyone made adjustments to include me when I wanted it (you always get some that wont). They went out of their way to include me in conversations, they gave me verbal cues that it was my turn to talk, they made sure I was ok when I moved away and sat on the very edge of the group, engaging with me one on one.
Yes I am very lucky with my group of friends, over the years they've got to know me and have found a way to accommodate my difficulties. This is how I'd like the world to be, honestly it is often only tiny things that need changing and a little bit of understanding goes a long way.
And by this group supporting me.in these situations, I've been able to make strides in my own social skills. Because I know they will always ask first, I allow them to hug me (kissing cheeks.is still a big no though), I had my very first birthday party this year at aged 50 and I enjoyed myself, despite the fact that I had to escape for 5minutes at various times. I've been to various events including local gigs that I wouldn't have dreamt of doing a few years back.
In fact I have a social life, but it's on my terms and the people that include me know those terms. I've had near meltdowns at.some of.these events and someone has always seen the stimming intensify and taken me outside for 5minutes to calm down.

In all honesty. It doesn't sound like you received the support for your ASD when you were younger. If you did have the support you would have been supported to understand and recognise moments of distress and find ways to manage these (with your choice!).

You sound very lucky in your friends, and you are obviously valuable enough to them that they want to do that, which is great.

But I would in no way expect that people should do that for me. I am not that special! If I can't keep up with what is happening around me, I would not expect them to change. Yes, it might be nice if it happened, but I don't think for me it would be a useful expectation. I'm quite happy to learn how to fit in better, how to mask better, how to cope with my feelings around that, how to decide what I can or can't cope with, etc. And I do find that change is possible; learning new skills can eventually reduce serious anxiety and make things possible that might otherwise not have been. I might not learn them in the same way as other people, but I can and do change over time. That doesn't mean I find it easy.

I have a very different experience and desires than some of the more vocal people in the ND community, and I think there is a place for my way of approaching things too. And it would be hard for parents or teachers to judge which a child might ultimately prefer. So there may always be a struggle between teaching a child to fit in, and teaching them that they are fine the way they are; both things can be possible. I found certain teaching methods very difficult, that 'forcing' normal behaviours or expectations was traumatic, and I think there are better ways of doing it. But some aspects of it, I do want to learn, and would not want to have been denied the opportunity.

Well no, I was finally diagnosed at age 45. Although according to.my my Mum, they always knew there was something different about me, they just didn't want me labeled.
Plus for most of the world autism wasn't something that affected girls and even in boys there was the Rainman stereotype.
If I had learnt to embrace it earlier in my life, I would maybe have learnt these coping strategies much earlier in life instead of just convincing myself there was something "wrong" with me

Pushing me out of my comfort zone causes me to burn out. Why is that good for me and the people around me?

And "everyone masks to some extent" shows a really shocking lack of understanding.

Im so confused by the idea teaching language skills is teaching masking. For us its feels the opposite.

My son used to mask at meals in other houses, eat things he didnt like and then have huge meltdowns. We rehearsed and taught him to say a few different things from not hungry, dont like, too loud etc and he can now advocate for himself rather than sit there going 'yummm' like he used to. At home he didnt mask and would throw the food at the wall and we'd have to guess if he wasnt hungry, couldnt manage the taste/texture or the environment.

I really want to understand this as i certainly dont want to increase his mental health issues.

This thread seems to suggest that learning language is masking and he should still be throwing food at the walls and i should have just got better at working out the problem

I wish I could like this comment a million times

I've read the whole thread and I'm exhausted. So much anger and contempt for people's views and feelings. My son was diagnosed at 2, had years of intervention at mainstream school alongside bullying and failed support and broken agreements. Who knows if any of that worked or not, school was his world then, not ours. He's now in his 30s and living with us as retired older parents. We all rub along because we have to. Life is ok but not the life any of us expected when he was 2 and everything was about hope for the future and trust in the system.

I generally keep away from threads such as this because often they're not about trying to help and support each other but full of anger and disdain for others' views. Autism is disabling and sucks. Our whole family has been affected over the years in ways that are both good and bad. The way I feel about this is different from other family members, friends, professionals we've been involved with and of course my son himself. Now, I just accept that it is what it is and look for the silver lining. For him, and others it will be different.

@PizzaFunghi
But you are "that special", autism is part of who you are and I'm sure that if you asked your friend group would make those little adjustments that would make your life a little easier.
I'm sure if you were vegetarian they would not try and force you to eat meat in order to fit in, but instead would make sure there would be veggie options available. Think of it in the same way, you may be pleasantly surprised at some people's reactions when you explain that, for example, you find physical contact really difficult please ask before you touch me. Or explain that you may go really quiet and look like you're not enjoying yourself, but that you really are ok, you just need to spend a little while watching.
The way I'm accepted and included by the group didn't happen overnight, it took me being able to share my difficulties with one or two of them first and then we worked.everything else.out on the fly. Yes there was the night where I just had enough "fun" and walked home by myself in the dark and rain, another time when I had a full on head slapping episode and needed someone to take me outside to calm down. It's been a learning experience for all.of us, over the years they've learnt how my autism affects me and I've learnt how I.deal best with those social situations

However, I also often see posts on here from parents of children / adults who are profoundly disabled by their autism, trying to explain that their experience, and their children's experience, is very different to those with what could be called high functioning autism. Where autism is not a "superpower" as some people like to say. So advocacy is one thing, but I don't agree that one group can necessarily speak for all, and doing so isn't helpful.

One thing that always becomes clear in these types of threads is that a lot of NT people don't think autistic people who can speak are autistic enough to talk about autism and therefore verbal autistic people should shut-up and let non-autistic people speak for autistic people who can't talk.

That's actually really unfair. What I find problematic is when people living with autism but who are verbal, can participate socially and in employment as well as the parents of young autistic people speak for the population of people with autism as a whole and/or drown out the voices of those who cannot speak or speak with the language that is readily heard by those with the power to describe autism or to allocate resources to the population with autism.

Yes, they're talking about their experiences as NT parents raising a child with autism. But they can only assume to know what their children's experience is from an observational point of view. They don't actually know what it feels like to have an autistic brain, they don't know what it feels like to think with an autistic brain, they don't know what it feels like to be autistic.

People will say "my child likes this, that and the other" because it looks like they like this, that and the other, but they can't know that is actually what their child is experiencing. Whereas verbal autistic people can say "actually, I just behave that way because I thought that was what was expected of me." Masking. Acting. Pretending.

I'm not saying only autistic people should have opinions on this, but people are sooo nasty about autistic people with voices because their opinions on autism are so different to their NT opinions on autism.

But the only people who know what it's like to be autistic are people with autism.

I totally agree with all of this comment. I'm unable to put my thoughts together in a coherent way today and this post said it all for me. I was diagnosed with ASD at 36, my eldest is diagnosed and my middle child is currently going through the process.