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Original poster

to not understand MNers against neurodiversity

484 replies

UkiUki · 12/12/2024 13:30

Inspired by another thread on here today but it’s an ongoing trend.

I’ve noticed that most, if not all of the time, when a poster suggests that a behaviour may be caused by ND, other posters jump on them and seem enraged that ‘everything is explained away with neurodiversity these days’.

There has been a lot of progress in understanding these conditions which has naturally contributed to an increase in people getting diagnosed. It is especially increasing in females as, per most medical issues, the parameters for diagnoses were created around male behaviour.

As someone currently in the latter part of the long and stressful diagnosis process, my motivation to suggest ND when I recognise certain traits in situations described is that my heart goes out to those who could flourish with a little extra understanding of how their brains work, especially children. I believe I would be a different person now if I’d had the support I needed growing up, instead of just believing I was lazy, clumsy and weird.

I feel a lot of irritation and sometimes outright anger from some posters, and the suggestion that people are using ND as an excuse somehow.

Aibu to not understand where this annoyance comes from?

OP posts:
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8
Perzival · 13/12/2024 08:50

Acrossthemountains · 13/12/2024 08:34

I'm sorry if you're struggling to access support for someone who is non verbal and requires 24 hr care because of autism, i really am. The system is under resourced and there's not enough support for those people.

But my dc, who is not non verbal and doesn't need 24hr care, has valid needs as well, and i won't apologise for trying to meet those needs. i genuinely believe that if my dc receiving a diagnosis impacts your dc, then it's the system that is at fault, not my child. He can't just switch off his autism and adhd because it's inconvenient for other people. The previous government stripped the provisions for autistic people to the bone. That's not my child's fault and he deserves to get the support he needs too - which are very likely to be very different to the support your child needs anyway.

Show quote history

If you look at my first post on this thread, I've said very similar to your post above. I do believe all people with needs should have them met. I think giving separate dx is the way forward and including parent carers in the discussion. I'm not on my own with thinking this, the term profound autism is being used as a way to do this, with more professionals/ groups taking this on.

My ds does have his needs met very well but I'm acutely aware that they may not always be and being able to say his diagnosis and have people understand what that means is necessary and that has changed.

Your post does prove my point to some extent. You acknowledge the differences in the children's presentation and the varying needs and provision required to meet them but you'll (rightly) advocate and fight for those needs regardless of the impact on others. It's ok i do the same for my ds. That's why I support the use of profound autism to distinguish. I'm also aware that by doing this support, funding and accomodations can be ringfenced officially or unofficially and those with less severe needs won't be included in that support (similar to how aspergers or high functioning used to stop people accessing support for autism). It's not right or fair but I too want my ds to be protected. This is already bring reflected in some of the changes proposed to sen law in the UK where more kids will be expected to have their needs met without an ehcp and only those with severe send will have ehcpntype provision (I'll look for a link to support this- it's worth a read for all send parents).

ChristmasGrump5 · 13/12/2024 08:47

Perzival · 13/12/2024 08:30

https://www.theguardian.com/commentisfree/2024/dec/01/the-good-doctors-version-of-autism-masks-the-reality-of-badly-failed-children?fbclid=IwZXh0bgNhZW0CMTEAAR3XkM5xeZ4iwb7hfcs2X3jSma241YXc3FhgLMLVuSQ4d4Nn3ckO5RGQiRoaemGWEyV2fTBxAGA6BCgE1bvw

This is a more recent article looking at issues of self advocacy and dx criteria. There are others especially around the date that "profound" autism was started to be discussed as a way of distinguishing those severly impacted.

Edited
Show quote history

What a ridiculous badly researched and incorrect piece of journalism.

Far too much to quote however this illustrates the ignorance in spades.

” For those with milder conditions, things have indeed improved. Schools have often become more inclusive over the decades, making allowances for different abilities and efforts to combat bullying.”

No things have not bloody improved . There is no “mild” autism. There is a high threshold with traits having a significant impact on life being part of it. The bullying and suicide stats for those with autism are massive. Over 60% of autism children experience bullying, some sources quote 95%. There is no support for autism and SEN provision is on its knees with little provided.

The author had a clear agenda and provided zero meat to her laughable article. All she could do was bemoan extra time in exam figures and quote Kemi Badenoch as feeling re there is too much privilege and protection for those with autism. 🤔

Gingerbee · 13/12/2024 08:40

CrazyGoatLady · 12/12/2024 22:49

Unfortunately yes, as a now former CAMHS professional, and parent of ND teens, there are some parents who are like this. And as you say, there's some who are just exhausted and can't do more than "survival parenting" and it's just too much to do AutPlay or coping strategies or do anything beyond the basics. As professionals we have to understand what is behind what may look like resistance before labelling families resistant.

Many of the neurodiversity movement's current cohort of influencers are toxic. Some of them seem to demand all kinds of special treatment and claim not to be able to do basic shit that they've been doing since they were kids after having a diagnosis for all of five minutes. ND excuses every single flaw they have or thing they aren't good at. They weaponise RSD and call people ableist if they are ever called out for any BS, saying how they all have such terrible imposter syndrome and feel so bad about themselves really, and they're so introverted and socially anxious they need to post sad selfies on a daily basis for sympathy and likes. They give the rest of us who have just been trying to get on with it as best we can and had to fight for even the smallest reasonable adjustments a bad name.

I'm increasingly seeing this same crap in the younger staff in my workplace, no doubt because they consume the narcissistic crap these influencers peddle, and/or had parents who didn't think they should have to learn any life skills. Can't deal with the gentlest of constructive feedback because they're ND and have RSD. Can't request annual leave via a system and wait for a decision because it triggers "demand avoidance" or anxiety. Can't be on time for anything because time blindness. Resilience and perseverance is "toxic positivity" or oppression. Adhering to the most basic of social norms that help people live alongside each other in communities harmoniously is ableism.

I'm absolutely here for making the world more accessible, understanding and accommodating difference (while still maintaining a level of community cohesion) recognising where we need more equitable systems and treatment, and actually better universal design with accessibility built in is good for everyone. But this self obsessed, commodified insta/TikTok version of neurodiversity can fuck right off.

Very true

Acrossthemountains · 13/12/2024 08:34

Perzival · 13/12/2024 08:02

Because it is.

Show quote history

I'm sorry if you're struggling to access support for someone who is non verbal and requires 24 hr care because of autism, i really am. The system is under resourced and there's not enough support for those people.

But my dc, who is not non verbal and doesn't need 24hr care, has valid needs as well, and i won't apologise for trying to meet those needs. i genuinely believe that if my dc receiving a diagnosis impacts your dc, then it's the system that is at fault, not my child. He can't just switch off his autism and adhd because it's inconvenient for other people. The previous government stripped the provisions for autistic people to the bone. That's not my child's fault and he deserves to get the support he needs too - which are very likely to be very different to the support your child needs anyway.

ChristmasGrump5 · 13/12/2024 08:25

Thedogstolemyheatedblanket · 13/12/2024 07:45

Totally agree with this.
Am also ND

Show quote history

Where do you draw the line? Your experience of autism didn’t speak for all.

arcticpandas · 13/12/2024 08:24

adulthoodisajoke · 12/12/2024 13:33

I think a broader understanding of ND is great

what I dont think is great is excusing behaviours because of it and showing no self awareness of how these things can impact other people.
People should be accountable for their actions regardless of what causes it

extreme cases of ND are obviously a different story.

I am ND

This. My son is ND and since his young age I have told parents about this. Not to excuse his behaviour but to understand that his understanding of the world is different and he might overstep boundaries because he needs more time to learn. Some have been really understanding and even told their kids to help him out by being very clear and tell him straight out if something bothers them. Like him talking too loudly, standing too close etc etc. Rather than just blank him this has helped him immensely.

ChristmasGrump5 · 13/12/2024 08:24

WatchOutForBabyHaggis · 13/12/2024 07:56

And herein lies the problem. What was once a very wide spectrum of normal is becoming narrower and narrower to a point where nuance and difference in personality is not allowed for

Agree with this. And labels then seem to be being slapped on everything that would once have fallen under that spectrum of normal.

Im addition to the suggestions of being ND, no one seems to be nervous anymore - of flying, exams, speaking to big groups of people. They have anxiety. Instead of being down for a couple of weeks after x event, they have depression.

You seem quite ignorant. You need to reach a high threshold to get a diagnosis of autism.

ChristmasGrump5 · 13/12/2024 08:22

Perzival · 13/12/2024 08:00

No it isnt a load of bollocks. It may not be you personally but the widening of the diagnosis had hurt a very specific group of people. People who aren't as serverly impacted (generalisation not aimed directly at you) can stop advocating for everyone with autism especially including the more severe because their version of autism is a million miles away from somebody who is profoundly impacted. In addition and again meant more generally, groups eg autism advocates who don't include parents/ carers of those who can't advocate for themselves can stop excluding them.

More targeted support is needed in addition to more understanding of what autism means to them and not people who self diagnose.

Show quote history

People across the spectrum require different resources. Nobody is taking away anything from anybody.

And as for advocating what are you on about?

Acrossthemountains · 13/12/2024 08:22

Perzival · 13/12/2024 08:00

No it isnt a load of bollocks. It may not be you personally but the widening of the diagnosis had hurt a very specific group of people. People who aren't as serverly impacted (generalisation not aimed directly at you) can stop advocating for everyone with autism especially including the more severe because their version of autism is a million miles away from somebody who is profoundly impacted. In addition and again meant more generally, groups eg autism advocates who don't include parents/ carers of those who can't advocate for themselves can stop excluding them.

More targeted support is needed in addition to more understanding of what autism means to them and not people who self diagnose.

Show quote history

What about those who are not self diagnosed but who are not as severely affected?

Ottersmith · 13/12/2024 08:18

macap · 12/12/2024 13:46

It’s disgusting. People don’t second guess other diagnosis but things like ASD/ADHD are fair game and MN does little about it.

My DD has just been diagnosed with ADHD. It has a severe impact on her life, she really struggles. To think people think she’s just naughty is infuriating. She is the kindest most attentive little girl. She just struggles.

I try not to listen but it does get to you.

I also feel people that make these uneducated posts have little to no qualifications/experience regarding the diagnostic criteria/process. So I try to ignore it because I’d rather speak to the actual professionals.

Yes and I always seem to think of people who are so quick to dismiss it, that they are probably neurodiverse themselves. That's why it annoys them so much. They are in deep denial. Haha.

Perzival · 13/12/2024 08:02

Acrossthemountains · 13/12/2024 07:56

You say that like it's a bad thing.

Show quote history

Because it is.

Perzival · 13/12/2024 08:00

Acrossthemountains · 13/12/2024 07:45

Well all that really says is that people with severe autism need more targeted and continuing support. It doesn't mean people who are not severely affected by their autism don't also need support.

I'm not sure how i feel about being told someone like me being autistic, harms other people with autism, mainly because that's a load of bollocks. I can't exactly just stop being autistic because other people are more severely affected, and i can't just switch off all the ways it affects me or my children in order to keep diagnosis numbers under a certain artificial level.

Show quote history

No it isnt a load of bollocks. It may not be you personally but the widening of the diagnosis had hurt a very specific group of people. People who aren't as serverly impacted (generalisation not aimed directly at you) can stop advocating for everyone with autism especially including the more severe because their version of autism is a million miles away from somebody who is profoundly impacted. In addition and again meant more generally, groups eg autism advocates who don't include parents/ carers of those who can't advocate for themselves can stop excluding them.

More targeted support is needed in addition to more understanding of what autism means to them and not people who self diagnose.

Acrossthemountains · 13/12/2024 07:56

Perzival · 13/12/2024 07:49

You've misused my words and my point stands. As the diagnosis criteria has changed (this is a fact, autism is an umbrella diagnosis) to include more presentations, people are going to look at more people and suggest/ conclude nd where as previously they wouldn't have.

Show quote history

You say that like it's a bad thing.

WatchOutForBabyHaggis · 13/12/2024 07:56

And herein lies the problem. What was once a very wide spectrum of normal is becoming narrower and narrower to a point where nuance and difference in personality is not allowed for

Agree with this. And labels then seem to be being slapped on everything that would once have fallen under that spectrum of normal.

Im addition to the suggestions of being ND, no one seems to be nervous anymore - of flying, exams, speaking to big groups of people. They have anxiety. Instead of being down for a couple of weeks after x event, they have depression.

HermioneWeasley · 13/12/2024 07:54

CrazyGoatLady · 12/12/2024 22:49

Unfortunately yes, as a now former CAMHS professional, and parent of ND teens, there are some parents who are like this. And as you say, there's some who are just exhausted and can't do more than "survival parenting" and it's just too much to do AutPlay or coping strategies or do anything beyond the basics. As professionals we have to understand what is behind what may look like resistance before labelling families resistant.

Many of the neurodiversity movement's current cohort of influencers are toxic. Some of them seem to demand all kinds of special treatment and claim not to be able to do basic shit that they've been doing since they were kids after having a diagnosis for all of five minutes. ND excuses every single flaw they have or thing they aren't good at. They weaponise RSD and call people ableist if they are ever called out for any BS, saying how they all have such terrible imposter syndrome and feel so bad about themselves really, and they're so introverted and socially anxious they need to post sad selfies on a daily basis for sympathy and likes. They give the rest of us who have just been trying to get on with it as best we can and had to fight for even the smallest reasonable adjustments a bad name.

I'm increasingly seeing this same crap in the younger staff in my workplace, no doubt because they consume the narcissistic crap these influencers peddle, and/or had parents who didn't think they should have to learn any life skills. Can't deal with the gentlest of constructive feedback because they're ND and have RSD. Can't request annual leave via a system and wait for a decision because it triggers "demand avoidance" or anxiety. Can't be on time for anything because time blindness. Resilience and perseverance is "toxic positivity" or oppression. Adhering to the most basic of social norms that help people live alongside each other in communities harmoniously is ableism.

I'm absolutely here for making the world more accessible, understanding and accommodating difference (while still maintaining a level of community cohesion) recognising where we need more equitable systems and treatment, and actually better universal design with accessibility built in is good for everyone. But this self obsessed, commodified insta/TikTok version of neurodiversity can fuck right off.

You’ve expressed this so well

Perzival · 13/12/2024 07:49

Acrossthemountains · 13/12/2024 07:39

Nobody would self ID or diagnose as having autism if the diagnosis criteria hadn't been widened. Eg little Tommy's mum on mimsnet "my ds doesn't have many friends/ is rude etc" would never have got a reply of "do you think he may have autism?" When autism meant the classical non/ limitedly verbal, requiring 24 hour support etc diagnosis that it was previously.

I can talk and don't require 24hr care. I'm autistic. Diagnosed by a consultant psychiatrist with 20 years experience. If that's your understanding of what autism is, i think you're the one that's the problem.

The diagnostic criteria was made up by psychiatrists decades ago, mainly based on how males present with these conditions - do we accept any other areas of medicine standing still for decades? Do we diagnose people with cancer based on 40 year old criteria, or do we accept that as science advances, diagnostic criteria changes and we gain a better understanding?

You've misused my words and my point stands. As the diagnosis criteria has changed (this is a fact, autism is an umbrella diagnosis) to include more presentations, people are going to look at more people and suggest/ conclude nd where as previously they wouldn't have.

CatContortionist · 13/12/2024 07:48

Frenchtoastie · 13/12/2024 07:45

Hardly need to reference a source, I clearly meant PIP

Show quote history

Of course, why didn’t I think of that. Yes PiP, that famously easy to get benefit that all autistic people are receiving.

Sarcasm in case that isn’t abundantly evident.

Acrossthemountains · 13/12/2024 07:47

Frenchtoastie · 13/12/2024 07:45

Hardly need to reference a source, I clearly meant PIP

Show quote history

Have you ever tried to apply for PIP?

My disabilities mean that the process of applying for PIP seems impossibly complicated - endless forms, interviews, appeals etc but as you're saying it's really easy free money, maybe I'll give it a go!

Thedogstolemyheatedblanket · 13/12/2024 07:45

adulthoodisajoke · 12/12/2024 13:33

I think a broader understanding of ND is great

what I dont think is great is excusing behaviours because of it and showing no self awareness of how these things can impact other people.
People should be accountable for their actions regardless of what causes it

extreme cases of ND are obviously a different story.

I am ND

Totally agree with this.
Am also ND

Disturbia81 · 13/12/2024 07:45

I agree OP, it stands out so easily to me now and explains away so many behaviours that people just think are odd or difficult. I feel it creates more patience and understanding, and actually helps both parties not just the ND person.. I've felt relief sometimes to realise someone is behaving like they are not to be a dick on purpose etc
Of course it shouldn't be an excuse for negative behaviours but it's an explanation.

CrazyGoatLady · 13/12/2024 07:45

Frenchtoastie · 13/12/2024 07:37

I cannot think of one person that I think has no ND traits, so if EVERYONE looked for a diagnosis it would be ridiculous.
terms are used far to broadly and I suspect it’s linked to the financial benefit of having a diagnosis which is completely wrong.
so yes I am completely sick of everyone saying they are ND, it’s called life we are complex mammals

😂😂😂😂😂😂

Will someone please tell me what these financial benefits are and get me some? I guess I missed that memo 🤣

If you mean things like PIP, or the disability component of UC, then most ND people unless they have other chronic health conditions, severe and enduring mental health issues or cognitive impairments won't qualify for those.

Frenchtoastie · 13/12/2024 07:45

CatContortionist · 13/12/2024 07:41

Financial benefit…if you’re going to make such accusations please back it up with actual sources.

Show quote history

Hardly need to reference a source, I clearly meant PIP

Acrossthemountains · 13/12/2024 07:45

Perzival · 13/12/2024 07:34

I meant to add this screenshot.

Well all that really says is that people with severe autism need more targeted and continuing support. It doesn't mean people who are not severely affected by their autism don't also need support.

I'm not sure how i feel about being told someone like me being autistic, harms other people with autism, mainly because that's a load of bollocks. I can't exactly just stop being autistic because other people are more severely affected, and i can't just switch off all the ways it affects me or my children in order to keep diagnosis numbers under a certain artificial level.

CrazyGoatLady · 13/12/2024 07:42

WillowTit · 13/12/2024 07:19

@CrazyGoatLady
i think parents like the levels, has it come from America?

No matter how many times we tried to explain to some parents that saying level 1, 2 or 3 autism is meaningless to most people outside of a psychiatric service and we need to look at each child holistically (we used stuff like communication passports, sensory inventories, learning needs assessments, etc) some of them still clung to it like a badge of honour. And you just knew the kind of parents they were going to be. The ones who enjoy telling other parents and other autistic people they don't really have any needs and life isn't really that hard for them. Or the "oh, my child is only level 1, so it's not that bad, he'll have a normal life!" ones who refuse all support for them or even don't tell their kid about their diagnosis.

I've had that stuff said to my face often enough as an openly autistic psychologist, "well, you're probably only a level 1/only have a bit of Asperger's, you're not that autistic are you?" I've had parents ask for another psychologist/family therapist because they didn't think an autistic person could be competent at it, and I've had parents accuse me of lying about my diagnosis. I had parents weaponise me in front of their kids "see, she's got autism and she's managed to become a doctor!" which I found deeply uncomfortable.

The ableism I had from parents, and no longer feeling able to deal with it every day, was part of the reason I left, if I'm honest, along with the issues with waiting lists, resources and clueless managers. There's only so much compassion you have left in the tank. It was exhausting constantly having to filter, because of course you do need to understand and be compassionate about why people are behaving in these ways - they often don't know any other way, they're burnt out, exhausted, don't know where to turn, having difficulty accepting their child has problems, are undiagnosed ND themselves. It was great when the support and the family therapy helped. But there were just too many parents who already knew better than we did, and you'd just be there like "then why are you here? You've waited 18 months for this support, moaned at the admin staff every week for that entire duration, and now you want to flounce because I won't write Level 2 autism or a meaningless phrase like complex needs on your child's assessment report".

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