Discover and read the best of Twitter Threads about #Autism

Most recents (24)

A #thread of threads:

I've been trying to collect all of the #autism threads I've written over the years so they're easy to access. Here's the links...
Read 34 tweets
Thread🧵My experience with A&E doctors last week who failed to understand my Autism and the seriousness of the situation which could’ve lead to me developing blood clots. #Autism #autismacceptance #ActuallyAutistic #allautistics #AutismAwareness #AutismTraining
Over a month ago I developed the cold sore virus in my mouth that wasn’t too bad to start with but it ended up developing quite severely due to my poor immune system. I was managing okay but eating less and less as it was painful to do so… last week it got to a severe point
I was unable to eat, drink, couldn’t talk without severe pain and I had lost 7kg in weight… I was unable to take my medication that is strong pain meds for my chronic pain and unable to take my mental health meds and my blood thinning medication that stops me developing clots.
Read 34 tweets
Growing up, I struggled in my relationships with other kids my age.
When I did hang out with other kids, they were often older or younger than me, additionally, my relationships were often very superficial, because, even when I wanted to, I didn’t understand how to get close to others or let people in.
For many years, as a preteen and a teenager, my best friends were our family cat and my dog, Ripley.
When I struggled to bond with others around me (even my family and caregivers) animals always were as kind to me as I was to them - like a mirror reflection back on me.
Read 8 tweets
.@eminesaner @guardian article on highly sensitive (HS) ppl says:

1) Large overlap w/autism
2) HS≠autism
3) Society should "recognise and nurture" ppl with HS traits

TFW MSM mirrors #actuallyautistic advocacy while managing specifically to exclude us.…
@eminesaner @guardian 2/ Not that I begrudge advocacy for compassion toward HS ppl, or anyone else. But AFAIK, nobody is electrocuting HS ppl or using techniques the WHO defines as torture on them and calling it therapy. There's a reason #actuallyautistic ppl feel some urgency about this issue.
@eminesaner @guardian 3/ So it is a bit jarring that the reason #autism is discussed at all in the article is for the purpose of surgically carving us out of the neurodiverse population the author is advocating for.
Read 6 tweets
Attending the NAPP National Association of Practicing Psychiatrists Gender Dysphoria In Young People Webinar 2 hours now. Will live tweet #live
This is a medical condition because it involves medication and surgery
Presentations by 5 different psychiatrists all experienced and working within the area of gender Dysphoria @dianna_kenny is speaking about intake assessment which is called “gatekeeping”
Read 38 tweets
10 things you need to know about #autism

1. Autistic people *do* feel emotions - we're not robots. Often we may struggle to identify them, though, and we may not show them on our faces.

There's some evidence to suggest that we feel emotions more strongly.
2. Autistic people are usually extremely sensitive to our environment, from sound to light to textures and smells. This is often a cause of our high stress levels.

It's like our senses are dialled up to 11, like Spider-man.
3. There are wayyyy more autistic people out there than you think. It seems likely its at least one-in-thirty people anx it may be more.

There's probably an autistic person right behind you, right now! (joke)
Read 11 tweets
Brutal EDS day, ribs sliding round every way, woke up in sensory overload and never left it. Brain screaming.

But it's also a good day for my favourite shirt 🌶️ to remind everyone that I am very spicy & that functioning levels and #autism "rating" scales are complete hogwash. 😘 White girl with long rainbo...
(get this shirt here - I don't know them but I Love this shirt.)…
& I don't have the spoons to answer say here's some deets on why functioning labels are NOT useful terms and how they hurt #autistic people especially nonspeakers!…
Read 4 tweets
Our #autism #microbiome paper “Autism-related dietary preferences mediate autism-microbiome associations” is out in @CellCellPress today! Thread below (1/n) 👇:
There’s been a lot of speculation about autism and the gut microbiome. But the “hype” has outstripped the evidence. A PubMed search in April 2021 found 56 review articles, versus 26 primary research articles in a recent meta-analysis:…
The “hype” has led to “therapies” marketed to parents claiming to support autistic children by changing the microbiome (probiotics, supplements, diets, faecal microbiota transplants). These come with significant cost, possible health risks, and unclear benefit.
Read 16 tweets
So there is news in my life:

My Autism Spectrum Disorder Diagnostic Report has finally arrived.

A thread.

(It would really be nice if people retweeted this.)

#ActuallyAutistic #AllAutistics #SelfDiagnosis #Gatekeeping #autism

An initial screening process, a dozen psychometric tests, multiple pages of my written answers to questions, an ADOS diagnostic interview, and more, were all part of this. I read it and I'm nervous. What will the report say?

This moment has been a long time in coming. It was a lengthy 5 month process.

And now it's arrived. My god, what will the report say?
Am I autistic or not?!

Read 20 tweets
Ten things you can do now to improve how you interact with autistic people in your life.

1. Don't make us feel bad for having our deep interests. So often non-autistic people mock us or show strange 'concern' for our interests and it's really unpleasant. #autism
2. Don't treat autistic adults and teens like little children. This is so frequent. It's insulting and degrading but often comes from the most 'well-meaning' people. Talk to us like we're grown ups. #autism
3. Let us stim. Our regular repetitive movements or sounds help us regulate our stress levels and are (usually) completely harmless and not a big deal, so don't make a big deal out of them. This includes doodling and 'fiddling' with stuff. #autism
Read 12 tweets
Myths about #autism that we just have to get rid of - a thread 🧵🧵🧵

Please share widely as that's the only way it can help.
1. "Autistic people can't make eye contact, so if someone does, they can't be autistic."

It's true that autistic folk don't tend to like eye contact - for many it's quite painful and unpleasant - but we are able to force ourselves, usually. It's a big part of '#AutisticMasking'
2. "Autism is a childhood condition."

No it's not. If you're autistic, you will be forever. You may learn to hide it (at cost) but you still are. You cannot 'grow out of' #autism.
Read 16 tweets
So very true. I'm definitely "more autistic" than ever after 3½ years of therapy. I consider this a huge success,though larger society probably disagrees. I now know how to take good care of myself, what my true needs are and how to address them. 1/
It's been so different from "help" I received when I was assumed to be NT. In fact, often what's good for me is total opposite from what's good for an NT person, and the advice I was given by people who didn't understand #Autism often managed to made my problems worse. 2/
Instead of trying to wrestle my #Autism into submission and numb my senses, I've learned to embrace them, and like I yesterday wrote in my one of my #MusicOfAutism tweets (go check them out!), instead of overwhelming me, they have started to sustain and nourish and delight me.3/
Read 11 tweets
Then onto those lighter subjects I promised you in honor of Kekri weekend, a celebration of new year, Ancestors, and domestic animals of ancient Finns!

I thought this'd be a good moment to start a new hashtag, #MusicOfAutism, where we can share some of our favorite songs 1/
we associate one way or another with #Autism in our minds and hearts. Music is a powerful language like that. I'll start by sharing a few of my favorites here, and with each song I'll write how I feel it relates to my #ActuallyAutistic experience. You are most welcome to share 2/
your favorites in similar manner. Due to copyright concerns, I won't be posting YouTube links for these songs, so you'll have to look them up. It'll be worth it, I promise! 3/
Read 35 tweets
When you are Black + differently-abled the world comes at you harder and from different angles. Here is a too-damn long thread on our non-verbal son with #autism. Today, he's 30 years old, lives semi-independently, works 2 jobs.

It is a lifetime of advocacy.

My late wife + I were so excited when she was first pregnant shortly after we got married. She was an attorney, I was a receptionist on Capitol Hill. Child was due in December. In November she went to see her parents in Nashville to get mom and dad to DC.
"James, the baby's not moving. I'm going to Meharry." I ran from my DC office, took the first plane smoking, sliding through halls, and I get to the room. Mom was holding Sheila's hand. Dad was shaking his head. The child was still born.
Read 33 tweets
Next up in the #ASHG21 plenary session is Jonathan Sebat (@sebatlab) covering WGS of #Autism combining common and rare variants.
#ASHG21 @sebatlab: Found more de novo variants in cases than controls, rare inherited variants overtransmitted to cases, polygenic scores overtransmitted to cases. As such, all 3 categories are associated with #Autism risk.
#ASHG21 @sebatlab: created rare variant and common variant risk scores and both were associated with #autism status.
Read 8 tweets
Out today in @NatureComms our 🐁+👨work where we show that in #Autism
➡️(mTOR-related) excess of synapses causes aberrant fronto-striatal activity
➡️ this signature can be decoded in human fMRI scans, defining an identifiable autism subtype
An important implication of our work is that it unifies two major pathological domains that in #Autism had long been regarded as distinct i.e. synaptic pathology & macroscale dysconnectivity

An expanded account of our results was reported here

All our previous results hold. We have now just added further evidence that Tsc2 mice lack major white matter/myelin alterations, further implicating synaptic pathology as cause for our findings, and documented that human findings are robust to multiple denoising strategies

Read 4 tweets
It has never been my desire to be someone who constantly has to call people/orgs out. Because believe me, I am far, far from perfect. But sometimes you try to work from within & folx tell you to STFU…leaving you no choice. A thread, & I’ma need serious signal boosting, please./1
Again, I TRIED to resolve this w/the individuals & the orgs most centrally involved. But that just resulted in me being gaslighted by @FamilyVoices & accused of “vilifying” others when all I wanted was equity for #ActuallyAutistic #Black parents/self-advocates./2
Recently, @FamilyVoices was awarded a $250,000 @PCORI grant designed to build capacity in the Black #autism community w/regard to engaging in research. Which is VERY much needed. Yay. Or so I thought…/3
Read 23 tweets
When I was diagnosed as autistic back in 2017 (when I was 34), I was waved from the door with a few leaflets containing links to websites like the National Autistic Society, and a reading list to take to the library.
That was it. I'd just been told that my brain was fundamentally, hugely different to other people's, and that I had spent my life trying to make up for this, at huge cost to myself.

But just a couple of leaflets.
Since then I've been contacted by the local health team exactly zero times. There was no follow-up care or counselling to help get through the life changing ramifications. I have to remind my doctor I'm autistic at every appointment.
Read 7 tweets
Ways that an autistic person's day can be ruined by other people - a thread 🧵🧵🧵

Please share widely - hopefully this will help folk realise what us autistic people are up against on a daily basis. Thanks!
1. Being forced to wear something uncomfortable. Whether it's a uniform of some kind, having to do up your top button, being told to wear a tie - there are loads of ways others' demands of our clothing can cause us extreme discomfort and even pain. #autism
2. Being made to sit still for any amount of time - especially if we are also ADHD. Being in a situation where we're not allowed to move or get up or escape can be incredibly stressful, and the longer it goes on, the worse it gets. #autism
Read 15 tweets
Ways that autistic people are not treated with humanity that you have probably missed.

A depressing and angry thread. 🧵🧵🧵
1. Forced to make eye contact despite it feeling extremely uncomfortable and vulnerable, despite it having no discernable benefits. #autism
2. Being forced to sit still despite us needing to make repetitive movements to keep ourselves calm and our moods regulated (stimming). #autism
Read 12 tweets
Trigger Warning: Trauma and Self harm for thread
@nolan_syreeta @manijadegarcia @BlackInMH

Today is my first trauma anniversary of the most severe medical trauma I have dealt with in my life in a critical period of my academic journey. Really, I could be in graduate school
right now. My applications to my 7 planned programs could have been so strong. This medical trauma happened 2 months before the deadlines to my graduate school programs. I had just gotten to the point where I was ready to fill out the applications that acceptance would have
meant leaving my medical teams, but I was prepared to make that change. This medical trauma was the worst 2 hours of my life to a consent that really wasn’t a full consent, to have my pain dismissed, to have wheelchair support to leave denied, to have a resident speak with
Read 25 tweets
Thread on #GNC & identity in #autism #Aspergers #adhd from @AspienWoman @AspiengirlVIP the assessment & diagnosis or self-diagnosis is full of dangers inherent in the vulnerability of many autistic female experiences, as they discover their authentic GNC selves/identity
From early on they don’t fit in, feel ‘different’, ‘alien’, ‘wierd’, from their peers. They are intent on following the rules perfectly, often devoid of context, correctly following the rules in black and white ways. They have intense intellectual & philosophical curiosity
About getting it “right”. They ask multiple questions from as early as they can talk. They use their intelligence to use strategies through imitation, echolalia, masking, personas of other people, overthinking, strong emotions perfectionism, social camouflaging, mimicking copying
Read 13 tweets
@TaniaAMarshall es experta en autismo y escritora. En este hilo recoge testimonios anónimos de profesionales de la medicina de diferentes países.
El denominador común es el culto queer, el daño a la infancia y/o el miedo a perder el trabajo si se quejan

Voy a publicar las preocupaciones anónimas de profesionales de la salud de todo el mundo RE: protección de los niños, medicalización, ética, terapia, dilemas éticos y morales, acoso en el lugar de trabajo, acoso de la junta ejecutiva y otro asuntos relacionados con el tema.
Hablo con #HealthCareWorkers en Australia, Nueva Zelanda, Canadá, Estados Unidos, Reino Unido, Suecia, Finlandia, entre otros. Sus historias, puntos de vista y voces merecen ser escuchadas y este es su espacio. Solo tuitearé el comentario, el campo de trabajo y el país.
Read 110 tweets

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