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Discover and read the best of Twitter Threads about #actuallyautistic

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It's #WorldMentalHealthDay - forgive me a tiny thread.

Since I published Electricity of Every Living Thing, quite a few parents have talked to me about their kid, who they think might, maybe, possibly be autistic.
Quite often, a teacher has suggested that their child is having difficulties, and that they should consider a referral for assessment.

What I often hear is, 'Surely not my kid, though? Surely they've got it all wrong?"

Or,

'I don't want my kid labelled with *that*'
Okay, I get it. I get that not everyone comes ready-fitted with the idea that being autistic is completely awesome, once you find people who treat you with respect.

I get it that a lot of people have a commitment to being like everyone else, which I find entirely baffling.
Read 10 tweets
@NeuroRebel Executive Function issues. I knew about the social stuff, and had learned a fair bit about the sensory stuff (and my parents knew and understood my more obvious sensory issues), but I had no idea about the #ExecutiveDysfunction or how much it affected. #ActuallyAutistic
@NeuroRebel My response is affected, however, by the fact that I was diagnosed as an adult a few years ago, and my sister had been training towards becoming an SLP for years before that, so we knew I was autistic and some of the elements involved before I was diagnosed. EF was new to me.
@NeuroRebel And it explained *so much* that neither I nor my parents nor my siblings had understood - like how really, *really* hard it is for me to keep my place clean.
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Hey #ActuallyAutistic friends, I’m working on some guidelines for the online community I manage, it’s a social justice space, and we want to be a safer space for neurodiverse folks. I can only do so much from my ADHD perspective, 2 questions:
1) What blocks do you encounter in social justice spaces?
2) What would make you feel more seen in social justice spaces?

It’s an online space so it’s all text-based, and we’ll be making 2 guides, 1 for ND folks and one for NT mods and community members to be more supportive.
My DMs are open if you want to share privately. I am totally cool with brain-dumping, feel free to fill up my inbox and don’t worry about translating to NT speak 💜
Read 6 tweets
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Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 16 tweets
Here is the reality of a day out for me as an #ActuallyAutistic person (usual caveat, we are all different):
1) even in low light I can barely open my eyes without my sunglasses on. In bright sunlight even my sunglasses don’t help. I cannot ask the sun to disappear.
2) I get on the tube & the environmental noise is so extreme for me that I need noise-cancelling headphones. That’s before we take into account chatting / announcements / other noise sources, plus strong smells, motion sickness & crowds. I can’t make these things go away either.
3) I have OCD as a comorbid condition. As I work down the street I have to step on the same type of pavement with both feet. If there is a patterned floor, I am nearly in tears with stress. I cannot ask people to make even pavements just for me.
Read 19 tweets
I really wish all the panicked, breathless newspaper articles about “banning” clapping at universities would do a little basic research and stop calling sign language applause “jazz hands.”
A little history: The #neurodiversity movement picked up sign language applause because the noise can be painful for some #ActuallyAutistic people. We started doing this in the 1990’s when we started doing IRL events like Autreat. Noise isn’t such a big deal on Usenet or IRC.
I don’t know enough about #Deaf history to know when applause was added to the American or British Sign Language vocabularies but they definitely did it first.
Read 9 tweets
So...

This whole fight to not consider Autism a disability, while noble in intent, is rooted in ableism.

In the idea that in order for autism to be seen as a neurological difference, we must separate it from disability.

#ActuallyAutistic
In this ableist idea that somehow if autism is called a disability, it means it's a bad thing. Or less "normal" or that if we call it a disability, it's suddenly a problem that needs to be fixed.

Accommodated disabilities are not problems. There's nothing wrong with disability.
When you bodly claim that Autism isn't a disability, you ignore the experiences of the *majority* of autistic people who are disabled because they are autistic.

It doesn't matter what model of disability you follow. This is the world we live in. In this world we're disabled.
Read 9 tweets
Oh, honey. Y’all KNOW how I feel about gatekeeping, right?

Here is an example of it in the #ActuallyAutistic community. This needs to stop.

People say if you’re self-dx’ed OBVIOUSLY you’re not really autistic/don’t know about ableism, or else you’d be dx’ed. First of all 1/
Ableism is, often, the EXACT REASON we don’t have a formal dx. That and other forms of bigotry.

So many of us were labeled as “problem children” instead of getting the dx & supports we needed in school. This is esp true of those of use who were born before ~ 1995...2/
...as well as those who are not white and AMAB. Socioeconomics plays into it a lot, as well.

Not that it matters, but some of us have actually experienced MORE ableism than some formally dx’ed folks. A lot of us are misdiagnosed with stuff that carries horrible stigma. 3/
Read 12 tweets
Why does my #autistic child manage to behave well all day at school, then go into meltdown when I collect them? A short thread for parents.
Hello. I'm autistic. So is our fine son. Let's look at a school day...
Generalising throughout.
First, a school day starts with a lot of cleaning-of-child (sensory pain).
And a lot of getting dressed into clothes that feel like sandpaper or barbed wire on the skin. ...ctd...
Then, there's the peril of the school playground with screaming, shouting, chatting. It blends into one hellish noise for the autistic child, unable to see faces to identify who is who, & can't read face expressions fast enough. So socialising becomes impossible & scary. ../ctd
Read 9 tweets
Going to do a little thread on what it’s like to be on the autistic spectrum. Will add to it from time to time, mostly myth debunking, stuff you might not know & how to help / interact with autistic people in your life. #ActuallyAutistic
Did you know that a lot of autistic people have problems processing sensory input? Even leaving the house can be totally overwhelming as we are less tolerant of bright lights, strong smells, loud noises (or multiple noise sources), textures, motion etc. #ActuallyAutistic
If you’re meeting an autistic friend, try to meet somewhere quiet & calm. If you can make the effort to travel closer to us, that helps greatly as long journeys can be really difficult. On top of the sensory issues, we can be very anxious about planning. #ActuallyAutistic
Read 88 tweets
Autism. A romp through history in some easy tweets. A thread.
It's been around for all of human history, as far as we know. A part of human diversity, and very diverse it is, too. Any gender, age, background, IQ, skill set. /ctd...
Autism was first noticed by a woman, Sukhareva, who wrote about in 1926 and noted that we had pretty major sensory issues. Then, some men claimed they'd invented it, and decided it was mostly to do with males, which it isn't. /ctd...
In fact, not only did they think autism was to do with males, but they were pretty sure it was young males, with a very low IQ, language difficulties and goodness only knows what else. All incorrect, as it turns out. So... /ctd...
Read 13 tweets
Dear @NevilleSouthall,

Hi! You're a great human. I respect all you do. But you're letting a non-autistic person speak for #autistic people, and I - we - need to talk to you about why that isn't okay.

(A thread - that I am happy for others to post on.) #ActuallyAutistic
#ActuallyAutistic people, like myself and many others, are spoken for - a lot. We often find ourselves without the ability to speak freely.

Not because of our own difficulties, but because we are spoken over. And ignored.

This can be small-scale, like at home...
...or large scale. Like providing a platform for people who aren't autistic to talk about autism.

I'm also bisexual. You wouldn't invite a straight person to talk about LGBT+ stuff, would you?
Read 16 tweets
Another hate campaign...
This time it's #endautismnow.
This is a truly vile one, and it's good to see so many #ActuallyAutistic people speaking against it. Here's my thoughts on it.
This'll be a long one...

CW: ableism, child abuse, violence, trauma, mentions of eugenics.
Okay, so first and foremost:

There is no 'cure' for autism. And even if there was, us autistic people wouldn't want it.
We experience life through the unique viewpoints that we have, and suddenly losing that perspective would be the height of trauma.
I'm talking about a full on existential crisis here... So much of how we perceive the world is shaped by our autistic minds. We would not recognise the world should that change so drastically.
Read 19 tweets
(Thread)
#ActuallyAutistic symptoms media tend to ignore:

- Fluctuating emotional age
- Hypersensitivity to sounds, smells, tastes, bright lights
- Insomnia
- Compulsive talking about special interests (infodumping)
- Involuntary strict adherence to spreadsheets and lists
- All-consuming obsessions with crushes
- Inability to see a barrier between "me" and "rest of the world"
- Emotional response to other people's mistakes
- Feeling of sadness, helplessness, anger at spelling errors
- Inability to tell time; to distinguish past, present and future
- Taking things literally
- Hyperverbalism: intuitive understanding of etymology, grammar, spelling; inability to use "easy" words when "big" ones convey things better
- Sing-song voice OR flat affect
- Spinning, skipping, clapping, flapping, childlike or wooden body language
Read 18 tweets
It really astounds me how many people think, "it couldn't possibly be ADHD, I can focus when I'm interested"

like hi you are literally describing hyperfocus which is common in both ADHD and Autism.

I just wish we had less stigma, more sharing important information.
Seriously one of the ways I bond with other neurodivergent people (especially Autistic and ADHD people) is to make jokes about how weird and sometimes wonderful hyperfocus is

it's a mental minefield of "I did all the things! But nothing on my to do list. Again. Whoops"
Knowing about hyperfocus in our ableist society is also really important

Because I think we all internalize that maybe we're just "making up our disabilities" or "it's not THAT hard to focus"

But then we end up beating ourselves up for variable attention and disability
Read 27 tweets
I'm re-reading @HHoangWrites #TheKissQuotient (read the first time in one sitting and forgot to tweet about it). Y'all, this is why #ownvoices fiction is so bloody important.

I can see myself in Stella. She sniffed Michael's t-shirt and is fascinated by his scent. That is so
accurate to my #ActuallyAutistic experience of sensuality and romance that I'm almost in tears on the second read because I can finally see me in a majorly recognized romance novel.

And damn Helen, can you ever write how to kiss! #TheKissQuotient

Publishing? I need MOAR.
This! Stella's night-time routine! Yes! #TheKissQuotient
Read 6 tweets
I spoke to a young woman yesterday who didn't think she could be autistic because she experienced empathy. Once more for the back of the room: autistic people do not lack empathy.
The misapprehension comes - I think - because maybe we don't always express our empathy in ways that non-autistic people immediately recognise. But it's there, trust me. We're sometimes overwhelmed by it.
I think this imagined lack of empathy is often used to de-humanise us: we're not rounded people; we have something lacking. It's just plain wrong.
Read 7 tweets
A lot of people reach out to me asking about autism because they suspect they might be on the spectrum too. No autistic person is the same, but below is a thread of different expressions and common co-occuring conditions
Autism can be described as differences in excutative functioning, motor skills, and sensory skills, as well as differences in communication and social skills (but the last two are emphasized too much, and the 1st 3 are not brought up enough)
What does this look like? I'm messy, clumsy, can't switch between tasks, have terrible hearing, and occasionally go mute or mix up my words
Read 21 tweets
It’s mental health awareness week-and as 1 in 4 of us will suffer from a mental illness I’d like to share with you my story.I have nothing to hide and no qualms about delving into my very candid story about my mental health. Trigger warning: suicide idealisation and a long read..
began feeling ‘strange’ around August time 2017. I can’t put my finger on what triggered it or what led me to decline so quickly but I just didn’t feel ‘right’.It all came to a head at Christmas time when I drove home on the motorway drunk after a fall out during a night out
I didn’t fear for my life, I already had it in my head that I was ok if I didn’t survive. Things got worse after that. I made it into work the first day back after Christmas and honestly didn’t know how I hadn’t crashed my car because that’s all I was thinking about doing
Read 19 tweets
So I've been thinking about this for a while now and I'd like to share my thoughts on the language we use, and how we think about, "challenging behaviour" (CB). I'd like to replace the term with Distressed Behaviour (DB)
For me the change from CB to 'behaviour that challenges', while welcome, doesn't go far enough. It also requires some clunky linguistic gymnastics to say. I think we can do better.
CB is usually defined as "Culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person...
Read 31 tweets
Some thoughts on today's paper in @MolecularAutism regarding Hans Asperger's complicity in Nazi crimes against people with disabilities. (Thread) molecularautism.biomedcentral.com/articles/10.11…
The paper makes a fairly compelling case that Hans Asperger was complicit in the Nazi eugenics project, using a wealth of documentary evidence that the author is to be commended for compiling. (1)
The paper has some flaws - for example, it criticizes @stevesilberman's NeuroTribes for not including this info on Asperger, when the author is very aware that the reason for this is that he declined to make his research available to Silberman. But overall, it's very solid. (2)
Read 23 tweets
Thread about "functional labels" and assumptions around verbal and other types of communication.
I am an #ActuallyAutistic adult, spouse of an #ActuallyAustistic adult (@bogiperson), and a parent of an #ActuallyAustistic child.
This thread is in reaction to @brookewinters33 's thread earlier today on functional labels (please check it out) and some of the antagonistic responses it gathered.

I will try to explain why "functional labels" are harmful in our lives as an #ActuallyAutistic family.
Useful context: I am an immigrant in the US. When my child was first diagnosed at 18 months (I was still with my ex at that time) we were insistently told by multiple professionals that we MUST use functional labels. #ActuallyAutistic
Read 35 tweets
I want to talk about autism and vaccines. I know it's all been said before, but I gotta say it, for me.

#ActuallyAutistic
Vaccines are safe. They don't contain poisons, or Mercury. They don't give kids autism or mental retardation.

They give kids immunities to common, deadly diseases.
I'm a mom.

When preparing to have my kid there was a ton of reading to do. A ton of permissions to sign.

"Do you authorize us to give the baby a shot of potassium. Possible side effects include..."
Read 14 tweets
Tonight, I'm going to be talking about Hyperlexia. For those who don't know, here's the wikipedia article on it:

en.wikipedia.org/wiki/Hyperlexia

"a child's precocious ability to read." Except it does affect us as adults. and it is a learning disability.
As a child, i picked up reading very fast. I was reading novels in Grade 2, and by grade 7, I was reading at a 3rd-4th year University level and had a vocabulary somewhere around most masters students.
Even now, I read quickly, and when it hits special interest time, I won't be able to stop. Like when I discovered the Dresden Files novels in ~2007.

And read all 10 out at that time in one weekend.
Read 16 tweets
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