Discover and read the best of Twitter Threads about #ActuallyAutistic

Most recents (24)

Stimming is natural.
Stimming is like breathing.
Stimming is a part of who I am.
Read 9 tweets my dad's side of the family is Assembly of God. They believe in divine healing. Mental health = spiritual health for them.
I'm really tired of the criticism I keep receiving about being on medication and having to explain myself, and having to justify why I'm drinking smoothies in place of eating solid foods.

I bought $10 of smoothie ingredients instead of $10 for 6 small nutritional shakes.
The last real grocery shopping trip was TWO WEEKS AGO.

I'm not into tasteless canned food or eating salads all the time (I actually feel worse when I have lettuce, thanks to IBS).
Read 16 tweets
Misunderstanding of the Day. A thread.
"People with autism don’t understand standard rules and conventions therefore if they have to wait for an appointment they can shout and get agitated". I found that extraordinary sentence on a London Council page, talking about #autism /ctd
Firstly, autistic people are amongst the best of the best at understanding rules and conventions, so that is simply wrong. But, let's look at the reasons why autistic people might become distressed if kept waiting in NHS settings. Here we go... /ctd
Here's a photo. On the left, how you might see a medical room. On the right, how my brain processes it, under intense flickering fluorescent lighting, surrounded by deafening machinery noise and overwhelmed by the stench of medical chemicals. It is blinding, painful. /ctd
Read 16 tweets
I just met a dad and his autistic son. Behaviors which had puzzled the dad for years I was able to instantly translate. It reinforced my frustration with the foundational things routinely missed by the autism industry - and why every autism entity NEEDS to hire autistic staff.
He told his son to say hi to me and the son whispered “Nooo!” and walked passed me. “I don’t know why he does that,” the dad said.

Me: “Often, placing sudden attention on us and putting us on the spot to do something can feel hugely uncomfortable. It’s a normal response.”
The Dad: “This is great advice. I wish he has listening to this.”

Me: “Oh, he’s listening. You’re listening to this, right?”

Voice of a kid hidden around the corner: “Yes!”
Read 12 tweets
My 16yo Aspie daughter sat me down & gave me feedback about my parenting. Pointed out my mistakes, asked me if I understood what went wrong, and said that the turning point was when we got her diagnosis & I changed my approach to autism-centered parenting. 1/ #ActuallyAutistic
The second turning point came when I got my Aspergers diagnosis & understood why she & I had such similar struggles. She said I went from meaning well & messing up (before her dx), to being a good mom (after her dx), to being the best mom for her (after my dx). 2/
Diagnosis gave us the tools to understand ourselves & each other. It gave us a language & it gave us the strength to stand up to those who would tell us we were wrong & attempt to train & “therapize” us into the dominant idea of “normal.” 3/ #ActuallyAutistic
Read 12 tweets
Dear world. It’s time to correct some assumptions about #autism. I am #actuallyautistic and fortunate enough to be professionally diagnosed. I would appreciate your taking the time to read this thread so you can learn about autism from a person with autism.
One of the biggest assumptions people make is that autism involves intellectual disability. This is incorrect. Autism often shows up in combination with a variety of other disorders and ID is one of them but the vast majority of people with autism do not have ID.
The official statistic most often quoted is between 31% (according to Autism Speaks) and 38% (according to the CDC) of autistic children have a diagnosis of intellectual disability. Note that this is a SEPARATE diagnosis. It is not inherent to autism.
Read 56 tweets
There is a good chance that, if you teach a college course, you'll have an autistic student in your classroom. Here are *some* ways you can be an ally - thread:
1. ''Silence'' isn't necessarily disengagement. Particularly in seminars or more intimate settings, the compulsion and requirement to be constantly participatory relegates many autistic students to the margins.
2. However, since autism is a multiplicity, many autistic students may participate excitably, particularly if the topic is of interest. One possible method here is to develop a system of participation that values autistic perspective while also carving space for other voices.
Read 21 tweets
Ok, a friend of mine just got a novel rejection saying that their #ownvoices autistic protagonist wasn't "autistic enough."

The editor's basis for saying this was that they, the editor, had been watching the show "Atypical."

Buckle up: I am going to talk about this AT LENGTH.
In this thread, if you are NT, I am going to explain several reasons why you SHOULD NOT EVER judge if a character is "autistic enough" by how well they match autistic characters on TV. Any TV.

Then when I am done with that I will suggest some things you can do instead.
Why should you not judge autistic characters by what you see on TV? There are several reasons.

There are several types of autistic representation on TV, from good to horrible. None of them should be used as a litmus test for another character's autisticness.
Read 25 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

Read 29 tweets

.@TrevorNoah of @TheDailyShow on @ComedyCentral has lost his voice and has been using AAC (Augmented and Assisted Communication) via his phone to communicate on and off the show. #Autism #ActuallyAutistic #Autistic #Disability #FilmDis (1/5)
Neurotypical/non-disabled privilege is temporarily losing your voice and using technology to communicate, and people still respecting you and not questioning your ability to still have complex thoughts and emotions and be supported in the workplace just like Trevor Noah. (2/5)
Autistic people and people with other speech disabilities who do not speak using their mouths have nuanced, complex thoughts and feelings just like people who speak with their mouths. (3/5)
Read 5 tweets
Getting ready to listen to Bryna Siegel on @KQEDForum, re: autism & the new prevalence rate.

Fun fact: I had lunch with Dr. Siegel & two autistic friends a few years ago. She talked about some of her theories for her new book. They both told her she was wrong. She ignored them.
@KQEDForum So even though Dr. Siegel has had “more than 40 years of clinical experience” with autism, if she ignores autistic insights, her opinion on autism is flawed.
@KQEDForum “Diagnosing for dollars” is absurd. We know from research that, if anything, #autism is under diagnosed, especially in girls, people of color, kids from low SES scenarios. Yes, there is always a small % of diagnostic error, but that is a dangerous misdirection.
Read 21 tweets
We need to talk

There's something that goes on in the #ActuallyAutistic community, a dirty little secret

Something we don't talk about

After all, perish that thought that we could be as guilty of treating each other badly as the non-autistics we criticise

It needs to be said, needs to be spoken about

No more pretending it doesn't happen, no more excuses

There's a #bullying problem within #ActuallyAutistic circles and people are getting badly hurt

It's not the ADW - forget about those nobodies. This is mainstream

We need to do better as a community

I'm not talking about calling out or tone policing - that kind of thing is rampant and part of the problem

I mean taking responsibility for the *effects* of our actions and not hiding behind "good intentions"

Read 4 tweets
What I learnt across 3 days attending sessions on accessibility and disability at the Internet Governance Forum:

- accessibility for disabled users is a long way down the list of priorities
- accessibility for those of us with invisible/cognitive differences is even further down that list
- accessibility is something of a dirty word for both designers and clients. It's seen as an imposition, compromising "good" design and stifling creativity and creative freedom.
- very few people recognise what an accessible web site or app actually looks like
Read 11 tweets
Would anyone be interested in a thread about a condition I recently learned Ive had my entire life.

Apparently it's incredibly common in autistic folk too.

It's called aphantasia
Okay to begin I want you to do an exercise with me.

It's something that I'm lifting heavily from a very interesting YouTube video, by amyrightmeow, which I suggest you watch after my thread because... Cont
as well as the exercise she goes on to talk about her personal experiences which are different to mine. ( )

Read 14 tweets
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?"


'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.
Read 4 tweets
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
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

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
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
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
#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

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