#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

• or whether you are of the view that autism is a medical condition. Most autistic people today would disagree with this, I think.

^^ high functioning maybe. Those in nappies that require 24hour care might
say otherwise if they had the ability

If a child doesn't qualify for a diagnosis then why do you think they should receive one?

I don't necessarily but I know of children who eg mask at school so they say they're "fine" and it's taken many years to get an eventual diagnosis having been turned away the first / second time.

Funny how that's the only point in my post people have answered.

No one has answered my question on what people should do or say when they're waiting 2 years to be assessed.

And sadly the reality is lots of schools downplay children's needs.

I found this thread very interesting twitter.com/sara_rose_g/status/1430429176427945985?s=21

"If you’re not autistic, please read: here’s how the cycle of autism misinformation works:

Neurotypicals (parents, researchers, autism professionals) decide to do something to “help” us. Usually it’s something distinctly unhelpful 1/"
....

@OrangeSamphire
But not every autistic trait relates to society.
Social communication- yes fair enough.
Sensory difficulties - nothing to do with anyone else.
Need for routine - society to a certain extent, but life itself is unpredictable. Even if you lived on a farm far away from anyone else the weather would mess with crops, your animals could die of disease etc.

It’s impossible to generalise.

@nanbread

If a child doesn't qualify for a diagnosis then why do you think they should receive one?

I don't necessarily but I know of children who eg mask at school so they say they're "fine" and it's taken many years to get an eventual diagnosis having been turned away the first / second time.

Funny how that's the only point in my post people have answered.

No one has answered my question on what people should do or say when they're waiting 2 years to be assessed.

And sadly the reality is lots of schools downplay children's needs.

Someone else said that help in school is provided based on need and not a diagnosis - did you see that? In the meantime specific things that present can be managed by the school even if there’s no ‘umbrella’ diagnosis

Sensory difficulties have a huge amount to do with other people. When left to my own devices I can control my sensory environment.
If I have to go to a shop with music blaring, or work in an office with flickering lights and a bleeping fire alarm, or sit on a bus next to someone reeking of perfume or fabric softener, I cannot.
So do I stay indoors?

Do I blame myself for my defecits?

Or do I use the social model to affirm my experience and request an accommodation where possible?

@nanbread

If a child doesn't qualify for a diagnosis then why do you think they should receive one?

I don't necessarily but I know of children who eg mask at school so they say they're "fine" and it's taken many years to get an eventual diagnosis having been turned away the first / second time.

Funny how that's the only point in my post people have answered.

No one has answered my question on what people should do or say when they're waiting 2 years to be assessed.

And sadly the reality is lots of schools downplay children's needs.

The threshold for assessment is way higher than it should be, because the system is overloaded and can't cope, and as you say, even when finally an assessment is agreed the wait can be years, with no support and unhelpful gatekeeping. Personally I think it's too wide a spectrum to fit within one umbrella, there are some that claim to speak for all in declaring that if the world was more accepting they would be fine; through to those screaming out for more help and support, and their family members, and being ignored or silenced by those offended that perhaps some do view themselves as having a disability.

@TractorAndHeadphones yes I saw that, assuming you saw the bit in my post you quoted about schools downplaying needs, also children masking at school doesn't help

I'm autistic and don't associate with the "autism community" and do not use #ActuallyAutistic. The same as I am bisexual but do not associate with the LGBT community - these things are not my entire personality.

Also to add, i do fully believe in "nothing about us without us", which means, did you actually talk to people who are autistic before you brought out this movie about an autistic person, before you make posters about what autism is like etc. That's what #ActuallyAutistic is about, i think. but i just find these communities and hastags to be exclusionary, that i'm not autistic enough to be a part of them.

@CapybaraConnoisseur

Also to add, i do fully believe in "nothing about us without us", which means, did you actually talk to people who are autistic before you brought out this movie about an autistic person, before you make posters about what autism is like etc. That's what #ActuallyAutistic is about, i think. but i just find these communities and hastags to be exclusionary, that i'm not autistic enough to be a part of them.

The thing is a lot of these things do have input from those with autism, but that's almost irrelevant as everyone's experience is different anyway, it can't really be universally represented because it isn't anything like a universal experience.

@noblegiraffe

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.

I used to participate in studies run by Cambridge University but I stopped as I wasn't getting anything out of being their human guinea pig. I'm not talking about being compensated in any way but simply I no longer see the point.

The studies I participated in weren't aimed at helping autistic people in any way; they were for the purposes of publishing research. I can understand this but I'm no longer interested in donating my free time to help someone else's career.

pearock of course, completely agree.

@CapybaraConnoisseur

Also to add, i do fully believe in "nothing about us without us", which means, did you actually talk to people who are autistic before you brought out this movie about an autistic person, before you make posters about what autism is like etc. That's what #ActuallyAutistic is about, i think. but i just find these communities and hastags to be exclusionary, that i'm not autistic enough to be a part of them.

#Actuallyautism means have talked to the right autistic person and listened to the correct views?

it can't really be universally represented because it isn't anything like a universal experience.

^^ agreed yet aa lot will have their own ideas and definitions puzzle piece bad..not a disability good ect will jump on others for not sharing their exact views

@inmyslippers

- or whether you are of the view that autism is a medical condition. Most autistic people today would disagree with this, I think.

^^ high functioning maybe. Those in nappies that require 24hour care might
say otherwise if they had the ability

You'll see in my post I did reference that there are individuals who are autistic and who also have learning disabilities.

As there are in the non-autistic population.

But autism often does come with issues around 'personal care' - from not remembering to shower or brush teeth to continence issues and 24h care needs. Which ones do you put down to learning disabilities? I have a diagnosis of Asperger's but find it impacts certain aspects of personal care. There isn't a learning disability in play, it's just the way I am with certain things. I find the push to 'sanitise' autism into 'we just need NTs to be more inclusive of any differences that they spot then everything would be fine' unhelpful as it ignores the wider range of presentations.

@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.

Totally agree @XDownwiththissortofthingX and even I, as an autistic adult, have been surprised by the degree to which society can be disabling for autistic people.

For example my daughter, who is also autistic, was so disabled by trauma caused by school that she was head banging, self-harming, developed a seizure disorder where she would black out every few minutes, even while walking, and was so unsafe she couldn't be let out of hospital for months.

Fast forward to her being home educated, and she's fit and healthy, has friendships, hobbies and is working towards a couple of GCSEs, aged 12.

A simple change of environment was what made the difference.

@excelthetube there's an awful lot of assumptions in your post and I have absolutely no idea what your point is.

Can I recommend the following Facebook group

When you're tired of autistic people but you are autistic people

It's an actually autistic uwu free zone

@OrangeSamphire
I may have waffled. The basic point is, it’s a disability. Even if you think it’s “just bad NT people environment making it so”

My reading of Excel's post is "You're a minority, know your place". I hope that's not what they meant.

whether you are of the view that autism is a neurotype (which many are, likely many unrecognised), and that within this neurotype some individuals also have learning disabilities, as does the non-autistic population, but the autistic population may currently look more heavily weighted than the non-autistic population towards including learning disability, because of diagnostic process / assumptions / medicalisation / prejudice.

My 5-year-old DS is diagnosed autistic... does this view basically separate his learning disabilities from his ASD diagnosis?