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#ActuallyAutistic trending

202 replies

gorgeousjewel · 24/08/2021 21:59

I feel I will be flamed for this but I really would like to genuinely understand.

The hashtag #ActuallyAutistic is trending this evening and I think I know what it means - it's for those who have had a proper diagnosis and are a supportive and collective group. (please correct me if I'm wrong)

What I don't understand is what do people who use this hashtag want to achieve?

What are others doing wrong (beyond funding, support, recognition etc..)?

What can I and others do better?

Do #uthenticallyAutistic follows think that there are clear divisions and that those described as "Neurotypical" have an easy/different life?

Genuinely interested and would love to know more - please help me understand

OP posts:
AelgenVsPreDator · 25/08/2021 19:13

The basic point is, it’s a disability.

For some people it is. For others, it’s a difference. You don’t get to define whether someone thinks of themselves as disabled or not (and neither does the NAS, who I have always found distinctly unhelpful)

XDownwiththissortofthingX · 25/08/2021 19:22

It's not about 'blame' or expecting 97% percent of people to change to suit me, my ire is at people expecting me to change to suit them because they consider me 'abnormal'.

My 'disability' doesn't affect them beyond making them uncomfortable when they don't get an expected response, or I don't want to participate in some activity that other people think I should.

None of that requires 97% of the world having it's arse put out of joint to accommodate me, and nor is there any need to constantly scrutinise my behaviour through the prism of the medical model of autism. People getting their knickers in a twist about others who don't conform to societal 'norms' is the only real issue I encounter, so to me it's clear where, more specifically who, the issue lies with, and it isn't me. I'm perfectly happy not participating and speaking my mind, honestly, when I'm asked.

AlfonsoTheMango · 25/08/2021 19:26

@CorrBlimeyGG

My reading of Excel's post is "You're a minority, know your place". I hope that's not what they meant.
Excel's posts are very clear about supporting the outdated medical model of disability: it's the fault of the disabled person and they shouldn't expect any revision to the environment because they're in a minority and the majority aren't inconvenienced.

So, you wheelchair users - find your own way into a building. Oh, and those of you with visual impairments? Get better spectacles. Why should there be content in different formats when the majority can read just fine?

Please note that this is what I got from Excel's posts and do not represent my views at all.

Greenmarmalade · 25/08/2021 19:26
  • anotherdayanothertea

Greenmarmalade
What is wrong with self-ID? When getting an accurate assessment is so intensely difficult with the nhs, why not?

Everything is wrong with it. Everything.

You can't just decide you are autistic any more than you can decide you are diabetic or asthmatic or schizophrenic. It actually baffles me that people think this is in any way acceptable, In particular because of your reason 'NHS' - what the fuck? So we should all just bypass the busy professionals and just diagnose ourselves hmm*

The paediatrician who did my DD’s assessment was shockingly ignorant. She said because my daughter made eye contact, she couldn’t possibly be autistic.

My GP doesn’t want to take further action.

So… in the meantime… how can I get help for her? How can I get school to understand her needs and not just isolate her?

Nhs are currently being entirely unhelpful and not helping her at all - I don’t understand your ‘wtf.’

I have been able to see the signs that she has asd much more than the crap professional she was assigned to. I’m happy to ‘self’ID in my position.

DoubleShotEspresso · 25/08/2021 19:40

This isn't true at all. There are huge numbers of teens self IDing online

Largely due to the insane waiting time for formal diagnosis in most areas possibly?

AlfonsoTheMango · 25/08/2021 19:44

Self IDing is nonsense.

TractorAndHeadphones · 25/08/2021 20:20

[quote XDownwiththissortofthingX]@TractorAndHeadphones

I have no issue at all with other autistic people regarding their own traits as problematic, or indeed, their autism as a problem.

@AlfonsoTheMango already articulated my thoughts far more concisely than I could, but simply put, I can't accept your original statement because it implies ALL autistic behaviours are problematic, and therefore autism is a problem. My autism isn't a problem in the slightest, it's the fact that society deems my lifestyle, living arrangements, coping mechanisms etc 'atypical' or 'abnormal', and therefore medicalises them as an illness that requires treatment or some sort of therapy in order to amend by behaviours into something society deems acceptable.

Bollocks to that.

What I actually need is to be left in peace to live my life in a way that means I can make my own adjustments that permit me to function perfectly satisfactorily. When other people insist ALL autism is problematic, and therefore MY autism is problematic ,when it has no impact on anyone else's life but my own, I am not going to accept that because it simply isn't true, and it perpetuates this nonsense belief that autistic people need to accommodate a society set up to suit NT people, rather than society accepting that 'normal' behaviour is a far broader spectrum of behaviours than has been deemed 'acceptable' until now.

I totally accept that for some autistic people they absolutely do require help and support because of their autism, but there is far too much focus on autism as a disability, and too little on the fact that what causes a huge amount of distress is not autistic behaviours themselves, but the way that NT-centric society attempts to force compliance rather than adjusting it's idea of what is 'normal'. I will never accept being told that I'm a problem because of behaviours that are perfectly naturally occurring.[/quote]
Accommodation goes both ways. So if autistic people shouldn't have to accommodate a society set up for NT's (perfectly valid), then NT's don't have to accommodate autistic people (perfectly valid).
Great! So we don't have to do anything but just not judge each other and everyone will be happy.

Except that it's not the way it works is it?

At least one party has to be 'understanding'. Some extra effort has to be made on one side. For example you mentioned people not accepting you speaking your mind and them being 'uncomfortable'. The solution according to you is for them to accept your behaviour - but ironically you don't accept their behaviour (which is their reaction to your words) either. If of course you do not care at all how they react then you are right, nothing to see here , you can disregard this entire paragraph.

My point was not that a specific individual was a problem but that extra effort, adjustments, whatever word you like needs to be made when there is a deviation from the norm.. Wheelchair users for instance - if every surface was well designed then they'd be about as mobile as someone who could walk and not 'disabled'. But the inherent reason that extra solutions (e.g. ramps) are needed is because their physical ability deviates from the norm. Because of this deviation it is classed as a disability.
Whether that solution is NT's be more understanding (as you have said) or society forces autistic people to think like NT's (which is what you said currently happens) is not my point of of discussion here. But either requires active action going out of the way on the part of whoever's closing the gap. The action is therefore a solution to a problem. Like a mathematical problem.

Also for the record.. I have ADD and my partner is autistic... you should see the hilarity that ensues... no NT's involved here! He has to be understanding, as do I. If we both decided to just go along doing as we please in keeping with our respective neurotypes we'd be punishing only ourselves. I have changed the way I say things for him to understand, but he extends the same courtesy to me. If it all went one way in either direction it wouldn't be fair.

Frazzledazzles · 25/08/2021 20:24

It’s about the fact that autistic people don’t want to be “cured” and see it as a difference not a disability.

The study is asking for saliva samples and the participants have to agree that they can be used for future research. There is a fear that research might lead to screening tests in pregnancy (as there are for Down’s syndrome) and termination encouraged.

Frazzledazzles · 25/08/2021 20:26

*that many autistic people, that should say, I can’t speak for everyone.

AlfonsoTheMango · 25/08/2021 20:42

@Frazzledazzles

It’s about the fact that autistic people don’t want to be “cured” and see it as a difference not a disability.

The study is asking for saliva samples and the participants have to agree that they can be used for future research. There is a fear that research might lead to screening tests in pregnancy (as there are for Down’s syndrome) and termination encouraged.

Interesting. Definitely NOT a study I would participate in.
AelgenVsPreDator · 25/08/2021 20:56

Participant information sheet for anyone who may be interested. Don’t want much, do they?!

join.spectrum10k.org/files/Spectrum%2010K%20Participant%20Information%20Sheet_Adult%20V3.0%2007122020_Clean.pdf

CoffeeWithCheese · 25/08/2021 22:06

To the person saying that provision in school should be based on need not diagnosis. Key word there: "should"

The only reason we paid to go privately for diagnosis for DD2 (who masks well and is very compliant in school but underneath it all is a bubbling ball of anxiety and rigidity of thought and behaviour) is that we hit upon a teacher who refused to just make adjustments in terms of them making a little child's life easier and completely refused to engage with us at all when we suggested being consistent with how we were explaining things, or when she was becoming really distressed etc as parents.

Basically both sides of the equation need to learn to not be a dick and try to understand. There's some shit which is just unnecessary and easy to adapt to support ND people - things like background music blaring in shops (Shit Christmas FM from about mid-October in particular) and schools being aware of sensory and communication friendly spaces... but there is some stuff that can't easily be adapted - I tend to overload badly when I'm in a place where there are lots of people moving around and going in different directions and my brain has to process all of that, work out who's going where, how to get my arse through it all and then facial expressions as well (masks have been HELL for me - I can't read people at all with faces masked) and my brain would really rather clock off and fuck off to lie down in a darkened room given half the chance. I've just worked on ways to make that as easy as possible for me - I get places early so I can have time in the car to get my head together if needed, I have AirPods in my ears the bulk of the time (often only on noise cancellation and not playing anything), and I tend to plan my routes around places. I can't stop people needing to go places, and I can't stop people randomly changing direction in shops or stopping to check their phone or whatever - so I have to try to work out a way for me to cope in that world.

The one that pissed me off the other day was someone from uni who is fully aware of the fact I'm waiting for an assessment appointment - who decided to give me crap about being upset on a video call, and not managing to control the turns in a conversation very well. I think she'd just forgotten herself on this one and misjudged it - but I find conversational turns quite difficult and something I have to consciously monitor anyway (I've been known to have a tally chart at the corner of notes of how many times I've spoken up to make sure I'm not dominating discussions - which gives an idea of how much I have to think about it) and it's a fucking nightmare on sodding Zoom and Teams for me. I was upset anyway as well - so that's the kind of situation where I don't think it's unreasonable to expect some understanding and adjustment.

Meh I just get on living inside my head. It's not much of a head, but I'm sort of attached to it.

Gingerkittykat · 25/08/2021 23:50

I've just been on Twitter and seen the #actuallyautistic crowd whipping each other into a frenzy about the research study. It includes trashing Chrish Packham and screaming that the researchers are nazis and TERFS!

Tibtom · 26/08/2021 00:27

It is not just non-autistic people who struggle with autistic behaviours and stims - other autistic people do too. So in that situation which autistic person should accommodate which? The one with vocal stims or the one with auditory hypersensitivity? The one who needs hugs or the one who hates them?

Tibtom · 26/08/2021 00:41

@Frazzledazzles

It’s about the fact that autistic people don’t want to be “cured” and see it as a difference not a disability.

The study is asking for saliva samples and the participants have to agree that they can be used for future research. There is a fear that research might lead to screening tests in pregnancy (as there are for Down’s syndrome) and termination encouraged.

Difference or disability? I've seen actually autistic people screaming both is the truth and it is ableist or something to say the other....

It is very simplistic way of looking at genetic research to think they will come up with one clear genetic marker like for down's syndrome. For a start it assumes that autism is associated with just one genetic condition which we already know is not true. It also ignores epigenetics. If the study showed a certain drug in pregnancy changed the impact of autism from being able to live independently to one where high levels of care was needed then would you think it ok to advise avoiding that drug? What about in exposures in early childhood? If not then would you say the same about children with PKU?

Clymene · 26/08/2021 01:04

@Greenmarmalade

* anotherdayanothertea

Greenmarmalade
What is wrong with self-ID? When getting an accurate assessment is so intensely difficult with the nhs, why not?

Everything is wrong with it. Everything.

You can't just decide you are autistic any more than you can decide you are diabetic or asthmatic or schizophrenic. It actually baffles me that people think this is in any way acceptable, In particular because of your reason 'NHS' - what the fuck? So we should all just bypass the busy professionals and just diagnose ourselves hmm*

The paediatrician who did my DD’s assessment was shockingly ignorant. She said because my daughter made eye contact, she couldn’t possibly be autistic.

My GP doesn’t want to take further action.

So… in the meantime… how can I get help for her? How can I get school to understand her needs and not just isolate her?

Nhs are currently being entirely unhelpful and not helping her at all - I don’t understand your ‘wtf.’

I have been able to see the signs that she has asd much more than the crap professional she was assigned to. I’m happy to ‘self’ID in my position.

That is not an ADOS assessment
WhenZoomWasJustAnIceLolly · 26/08/2021 01:08

Educational accommodations are based on need not diagnosis as is DLA.

There speaks someone who has never had to navigate the system !

WhenZoomWasJustAnIceLolly · 26/08/2021 01:08

That is not an ADOS assessment

So?

WhenZoomWasJustAnIceLolly · 26/08/2021 01:12

I could run and score the ados on my child but it wouldn’t tell me any more than I already know about them (I have one dc formally diagnosed).

Not all autism assessments use ADOS. It’s a tool, not gospel. You can make it say what you want it to say like any other tool. What’s important is the observations of someone who understands autism.

I don’t have a definite opinion on self ID and I think I do consider my (diagnosed) autism a disability. But some of these replies are seriously arrogant and dismissing people’s lived experience.

WhenZoomWasJustAnIceLolly · 26/08/2021 01:13

I love the innocence of those who think school will support a child based on need and understand the subtleties, and that professionals have the definitive answers and are always well informed. It must be lovely to live in that world.

Clymene · 26/08/2021 01:15

@WhenZoomWasJustAnIceLolly

That is not an ADOS assessment

So?

So, that isn't how the NHS assesses whether a child has autism.
Clymene · 26/08/2021 01:16

It's pretty much the best tool that's out there. I have little truck with self ID

WhenZoomWasJustAnIceLolly · 26/08/2021 01:25

The NHS doesn’t always use ADOS. It’s ok, but it’s not gospel.
Self ID is complicated and I have mixed feelings. Someone isn’t autistic just because they say they are. Equally, someone doesn’t stop being autistic because a professional says they aren’t.

XDownwiththissortofthingX · 26/08/2021 01:34

The solution according to you is for them to accept your behaviour - but ironically you don't accept their behaviour (which is their reaction to your words) either

I am perfectly accepting of their reaction. What I am not accepting of, is being told to change my own perfectly honest and reasonable behaviour because they don't like their own reactions to my honesty.

You are right, in that I don't particularly care how they react, after all, if they don't want to know then they don't need to ask, however, as I've already explained, it's not the reaction that is the issue, it's the aftermath, i.e. how they sometimes respond to their own reaction.

If I was being dishonest or deceitful, then of course I could understand why people might want me to change my behaviour. As I'm sure you know, dishonesty and deceit are not vices that most autistic people engage in or tolerate to any degree. I'm no different. I speak honestly if I'm asked an opinion, so if that honesty is unacceptable or deemed offensive, what am I supposed to do to be the one who 'adjusts'? Lie, tell them what I think they actually want to hear instead of what I actually think? I'm simply not capable of that, in the main because I'll have no idea what it is people actually want to hear in the first place.

So we're left in the situation where the only real solution is for NT people to do one of two things. Simply stop asking if they're not willing to accept an honest answer, or, adjust their thinking about autism, and accept that while they might not like my answer, they're going to get a fundamentally honest one and really have no reason at all to complain that they don't like it and therefore it's up to me to somehow change a behaviour that I'm incapable of changing.

The last part is really the nub of it. There's still a huge element of 'change, because you are unacceptable as is', when the reality is it's simply not possible for an autistic person to alter certain behaviours without them becoming extremely distressed and ill.

OrangeSamphire · 26/08/2021 07:01

@Gingerkittykat

I've just been on Twitter and seen the #actuallyautistic crowd whipping each other into a frenzy about the research study. It includes trashing Chrish Packham and screaming that the researchers are nazis and TERFS!
There’s also this wonderful thread on Twitter which I’m sure anyone who has posted on this thread will be interested to read:

twitter.com/annmemmott/status/1430582699656458241?s=21