#ActuallyAutistic trending

[gorgeousjewel]

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

Think about how many parents on this site post about struggling to get referrals for their obviously neurodivergent children. Services are reluctant to give referrals to children not coping never mind adults.

It's really important that resources are clear regardless of where your diagnosis is. For instance, DP thinks she has ADHD. We are paying for an assessment but in the meantime she is using tips online to help manage hers and it has improved her life so much. I could think of a million more examples like this.

Functioning labels are a waste of time. I would have been considered 'high functioning' at school and was supposedly v academic but I scored more than twice the required points for an autism diagnosis. And I struggle with life skills.

People with autism tend to have spiky profiles. It's not like you're 1% autistic or 90% - it doesn't work that way.

I'm autistic. I've been diagnosed 3 years now. There are lots of self diagnosed autistics on a online group. I've often wondered what if they aren't autistic at all.

Sorry I can't remember who to tag.

I’m not policing.

I’m pointing out it is a misleading response.

A skim reader might form the view that the hashtag is trending because of an argument between the different autistic identities.

I am adding the information that this is not the case.

If self ID is something that you feel needs discussing, it would work better as a separate thread to avoid confusing the issue.

I think it's fairly rare for people to think they're autistic when they're not. I remember finding online communities of autistic women and thinking I'd finally found others in the world who are like me.

@imjustsoworried

Also to be honest I do agree with self ID. I was finally diagnosed in my late teens after struggling through high school. What got me by was self ID and using methods discussed online to manage my undiagnosed autism as I managed exam stress with no accessibility requirements met.

I didn't outright say, 'Oh, I'm definitely autistic' until I was diagnosed, but I did fight tooth and nail for a referral for a diagnosis, and then got one quite quickly once I was in the right hands. Accessing a referral is a mindfield and it's important that those considering an autism diagnosis have access to resources too. I would have crashed and burned without them.

Not talking about you here, but a lot of the people who self-ID may or may not actually be autistic. Whatever is going on, if strategies help, great, but many strategies help with a lot of different things.

Fine for someone to say they think they’re autistic, waiting for diagnosis, however they want to phrase it, but IME the main “autism police” are self-ID and i don’t appreciate being told I can’t be autistic because I don’t act or think like they consider I should.

@Itsnotover
What really pisses me off about threads like this is that there is still so much ignorance about autism and people are asking why others make videos about it? When we have to hear day in, day out about how 'everyone's a little bit autistic' and we shouldn't let our autism define us (f off) Functioning labels encourage ableism end of. I'm autistic myself and I have 2 diagnosed daughters.

How do those who are "ignorant" find out more; if we are castigated for asking questions?

Why do you also assume I am neurotypical?

@gorgeousjewel

Did you read the tweets before you started the thread?

@Itsnotover

I think it's fairly rare for people to think they're autistic when they're not. I remember finding online communities of autistic women and thinking I'd finally found others in the world who are like me.

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

There are also, evidently from posts on here, huge amounts of men who have been told by a partner that they may be autistic when they are just actually cunts

Lots of people self ID who are not autistic and it is damaging to autistic people.

@AelgenVsPreDator Who are the autism police? I've not seen anything like that - not to dismiss your experiences but that's shocking to hear. I work in disability in film and most folk I know acknowledge that autism is hugely variable depending on the person.

@anotherdayanothertea I was once a teen self ID'ing online. I'm now an adult with a diagnosis I should have gotten far, far before I ended up in a psych ward because as an 18 year old I couldn't cope with expectations in a neurotypical world. Just because they're teenagers it doesn't mean they're making it up, what an awful statement.

the main “autism police” are self-ID and i don’t appreciate being told I can’t be autistic because I don’t act or think like they consider I should.

It's this. There are groups of them online shouting as loud as they can about how certain terms don't exist - Asperger? You can still get an Asperger diagnosis in the UK, it's less commoner as most use DSM V but ICD 10 still has Aspergers as a valid diagnosis but we have #ActuallyAutistics in swarms telling people 'off' for using their OWN diagnosis. That is damaging.

You’re telling me to ‘go away’ - and reckon I’m the one policing your posts.

Why is it objectionable to have a factual inaccuracy flagged?

[quote imjustsoworried]@anotherdayanothertea I was once a teen self ID'ing online. I'm now an adult with a diagnosis I should have gotten far, far before I ended up in a psych ward because as an 18 year old I couldn't cope with expectations in a neurotypical world. Just because they're teenagers it doesn't mean they're making it up, what an awful statement.[/quote]

I did not say every teenager saying they are autistic is lying. It's not untrue though that there are groups dedicated to self ID full of teenagers. A lot of them are trans too - do you believe that to be the case?

@TumbyTumm

Did you read the tweets before you started the thread?

Some of them yes but the AA hashtag has been around for a very long time - hence my initial question (which wasn't about the specific issue you are referring to and social media users you are referencing)

Actually autistic is used largely but not exclusively by people who have self diagnosed as autistic. Iirc it started in response to neurotypical people speaking on behalf of autistic people and shutting us out of debate about ourselves and our wellbeing but like everything else it was hijacked and became a marker of something else.

While I appreciate not everyone has speedy access to diagnosis and that in places like America it can be too costly to get diagnosed and I also understand that many people begin to realise they’re autistic long before getting diagnosed, I do have issues with the AA crowd speaking on behalf of all autistics and policing how we talk about ourselves. Positioning yourself as a spokesperson for the autistic community based on self diagnosis is inappropriate IMO because it may well be the wrong diagnosis and no one person can speak on behalf of a community.

I’ve walked away from the autism communities because I’m so sick of the policing of everything which doesn’t take into account the realities of autistic communication styles.

[quote imjustsoworried]@AelgenVsPreDator Who are the autism police? I've not seen anything like that - not to dismiss your experiences but that's shocking to hear. I work in disability in film and most folk I know acknowledge that autism is hugely variable depending on the person.[/quote]
It’s almost exclusively an online social media phenomenon IME.

Haven’t been on many for a while, but there are or were a lot of people who are quite prolific posters in various communities who have very fixed ideas about “what autistic people are like”. They all seem to have read the same articles about stereotypes and if you dare to say that your experience is different then it’s a pile-on and accusations of not being #actuallyautistic…

Which was not great when I was newly diagnosed trying to find out what the hell the diagnosis meant in practice.

Ok.

More widely it’s about adult autistic people (who are not necessarily parents) weighing in on conversations about how to raise autistic children/ support autistic people.

@anotherdayanothertea - disagree with you about self-ID. Your asthma example doesn't work - e.g. you start wheezing around cats, and therefore be pretty sure you have a cat-induced asthma allergy, and know to avoid them or take an antihistamine. A doctor telling you that you have a cat allergy doesn't change your experience and how you know yourself to be.

Plenty of people (like me) don't seek a formal diagnosis. I don't like having the focus on me and I don't like talking to doctors (or anybody) about health or thoughts. Maybe some people self-ID wrongly - but in my case, having read a lot (and I mean a lot) about autism in adult females (including scientific papers in peer-reviewed journals), suddenly a hell of a lot of things about me and about my life make sense, including my social stress, excessive sensitivity and apparently different approach to life. My big sister has a severe eating disorder and has been diagnosed. I personally have always avoided doctors whenever I possible can and do not welcome diagnoses, ever really. (Example - I finally gave in and spoke to somebody about my generalised anxiety disorder in order to get access to CBT therapy. They confirmed I have GAD. I did not need them to confirm this to know it, I knew it already, but I was at that point 'undiagnosed'.)

I'm not going to go on twitter and declare I have autism and start speaking on behalf of people with diagnosed autism, but I equally don't think people can blanket say to somebody that their self-ID is invalid unless they happen to like talking to doctors and getting diagnoses.

[quote HadEnough798]@anotherdayanothertea - disagree with you about self-ID. Your asthma example doesn't work - e.g. you start wheezing around cats, and therefore be pretty sure you have a cat-induced asthma allergy, and know to avoid them or take an antihistamine. A doctor telling you that you have a cat allergy doesn't change your experience and how you know yourself to be.

Plenty of people (like me) don't seek a formal diagnosis. I don't like having the focus on me and I don't like talking to doctors (or anybody) about health or thoughts. Maybe some people self-ID wrongly - but in my case, having read a lot (and I mean a lot) about autism in adult females (including scientific papers in peer-reviewed journals), suddenly a hell of a lot of things about me and about my life make sense, including my social stress, excessive sensitivity and apparently different approach to life. My big sister has a severe eating disorder and has been diagnosed. I personally have always avoided doctors whenever I possible can and do not welcome diagnoses, ever really. (Example - I finally gave in and spoke to somebody about my generalised anxiety disorder in order to get access to CBT therapy. They confirmed I have GAD. I did not need them to confirm this to know it, I knew it already, but I was at that point 'undiagnosed'.)

I'm not going to go on twitter and declare I have autism and start speaking on behalf of people with diagnosed autism, but I equally don't think people can blanket say to somebody that their self-ID is invalid unless they happen to like talking to doctors and getting diagnoses.[/quote]

Right, so thinking you are autistic and blatantly saying 'I'm autistic and this is how we feel' are 2 different things? Yes. I agree.

@anotherdayanothertea I think I agree with what you wrote so maybe I mis-read the point of your post?

But yeh, I think it would be valid for me to say 'I'm autistic and this is how I feel' - just not 'I'm autistic and this is how WE feel'...

Posted too soon!

My problem with with self IDing people using the hashtag ActuallyAutistic, because you know, unless you have actually been diagnosed you don't really know if you are autistic or not. You are correct the asthma was a bad example, but only because I didn't realise rearing to a cat was an asthmatic thing that could be treated with antihistamine. So yes, I fully understand, particularly with women (I was in my 40s when I was diagnosed myself, but I thought I was autistic for about 2/3 years before that) I understand that some may suspect they are autistic and not be able to access the diagnostic services, but at the same time these women are not the people shouting #ActuallyAutistic so they are not who I was talking about.

Not being autistic does NOT mean you are neurotypical. I wish people would stop using neurodiverse just to mean autistic when there are a range of other reasons why someone may be neurodiverse. Non-autistic neurodiverse individuals are finding themselves drowned out or silenced by the #actuallyautistic crowd who at best try to speak for them without any knowledge of their conditions, and at worst deny they exist.