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Original poster

#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:
inmyslippers · 24/08/2021 22:01

Actually autistic crowd are the very vocal autism police. They like to bicker over functioning labels. Aba therapy and call everyone nazis. I have autism but don't like to associate with them

SuperLoudPoppingAction · 24/08/2021 22:03

It's not trending in order to make a point - it's just a hashtag some autistic people use when they want to chat to likeminded people.

OrangeSamphire · 24/08/2021 22:03

It’s just a community. Because autistic experience is different from non autistic experience, is marginalised and therefore needs specific space for conversation. A hashtag can help create that. Digitally, at least.

lilmrschatty · 24/08/2021 22:08

It's just a hashtag some autistic people use to talk to each other. They aren't trying to achieve anything by using it, it's just a way of tagging posts. Most autistic people understand that it's not easy to get a diagnosis and would be happy to talk to people who are self diagnosed using that hash tag too.

TumbyTumm · 24/08/2021 22:10

There’s a breaking news story about a genome study into autism

CoastalSwimmer · 24/08/2021 22:10

I got the impression it was because the autistic community are fed up of Neurotypicals lecturing the NeuroDiverse even though they have no lived experience of the condition.

anotherdayanothertea · 24/08/2021 22:11

I have read in various Facebook groups that it started off to let people know they were an autistic person rather then the parent of an autistic child. Now it's used for the 'self identifiers' to make a mockery of those of us who have an actual diagnosis.

SuperLoudPoppingAction · 24/08/2021 22:11

The genome study is likely why it's trending, true.

anotherdayanothertea · 24/08/2021 22:12

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk guidelines.

TumbyTumm · 24/08/2021 22:12

I haven’t followed it closely - I’d have to look it up to check details - but the gist is to be distrustful of the motivations for the research/ disappointed that this is seen as a priority.

‘Actually Autistic’ in the sense of ‘did you ask any actually autistic people what would be useful to research?’

Goofers · 24/08/2021 22:12

I think it’s a reaction to the many research studies that ask for participants who are “diagnosed autistic or who are self identified as autistic,” thus rendering the research meaningless?

noblegiraffe · 24/08/2021 22:14

There's a drive to recruit people into an massive new autism study that involves looking at DNA.

They are worried that it could eventually be used for prenatal screening. I expect that's why it's trending tonight.

Original poster
gorgeousjewel · 24/08/2021 22:17

@TumbyTumm (and others)

Actually Autistic’ in the sense of ‘did you ask any actually autistic people what would be useful to research?’

Thanks for this - it is another angle I hadn't thought of at all.

I understand that a hashtag designates a community but wonder how/when that starts to trend - so must be related to current events and experiences that I am unaware of at present

OP posts:
AelgenVsPreDator · 24/08/2021 22:18

I’m not surprised it’s trending, looking at the consent form for the genome study. I was going to sign up but am really uncomfortable with the amount of access to medical records / who might have access in the future.

I have issues with some of the #ActuallyAutistic lot, though, who kept telling me I was doing autism wrong. I am diagnosed and female; the people who were telling me were undiagnosed males.

TumbyTumm · 24/08/2021 22:18

It really isn’t to do with diagnosed/self identify.

There is comprehensive frustration with autistic traits being seen as problems to be fixed.

For example, very punitive ‘therapies’ to stop kids hand flapping - because ‘average’ people find it ‘weird’ - even though ‘actually autistic’ people report that it’s comforting and calming.

This makes for a fraught relationship with scientists/doctors. On the one hand, a lot of people are struggling and really want help. On the other hand, they feel disenfranchised and pathologised by a lot of research that gets published.

Hence the strong reaction to the announcement of this massive research project

Peacrock · 24/08/2021 22:19

It looks mainly to be people seemingly attempting to speak for all autistic people whilst acknowledging not everyone with autism has the same experience which seems to be somewhat at odds.

coodawoodashooda · 24/08/2021 22:19

I wondered this too op. Didn't know where i could ask.

anotherdayanothertea · 24/08/2021 22:25

It really isn’t to do with diagnosed/self identify.

It may not be about that, but it has become very much used by the self iders to state they are autistic.

Original poster
gorgeousjewel · 24/08/2021 22:28

Thanks @TumbyTumm - can you tell me/us more about this research project please as I'm in the dark about it - or tell me where to look and do legwork myself?

OP posts:
MulanIsChinese · 24/08/2021 22:32

It's called Spectrum25k I think and it's being led by the leading expert on Autism, Professor Simon Baron-Cohen.

MulanIsChinese · 24/08/2021 22:34

Sorry Spectrum10 K

Original poster
gorgeousjewel · 24/08/2021 22:34

Thanks @MulanIsChinese

OP posts:
inmyslippers · 24/08/2021 22:40

It really isn’t to do with diagnosed/self identify.

It may not be about that, but it has become very much used by the self iders to state they are autistic.

^^ definitely the self diagnosed have latched onto it. Blah blah self diagnosis is valid...proceeds to tell people they can't call themselves Aspergers

TractorAndHeadphones · 24/08/2021 22:43

@TumbyTumm

It really isn’t to do with diagnosed/self identify.

There is comprehensive frustration with autistic traits being seen as problems to be fixed.

For example, very punitive ‘therapies’ to stop kids hand flapping - because ‘average’ people find it ‘weird’ - even though ‘actually autistic’ people report that it’s comforting and calming.

This makes for a fraught relationship with scientists/doctors. On the one hand, a lot of people are struggling and really want help. On the other hand, they feel disenfranchised and pathologised by a lot of research that gets published.

Hence the strong reaction to the announcement of this massive research project

If autistic traits weren’t problematic - then autism wouldn’t be a problem would it? Autistic DP finds this a very logical conclusion and fails to understand why people make a huge fuss.

The social media ‘autistic community’ has become much like any other group a cesspit of people shouting over each other. I wouldn’t read too much into it. Especially since it’s now cool to pretend to be autistic =.=

AelgenVsPreDator · 24/08/2021 22:48

If autistic traits weren’t problematic - then autism wouldn’t be a problem would it?

Problematic to who, though? The autistic person - fair enough. Neurotypical people who insist that their way is the only way to do things - nope.