Discover and read the best of Twitter Threads about #autism

Most recents (24)

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.

THREAD Image
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. Image
"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
Today someone told me because I put my son in ABA I would obviously hate if he was gay and had sex with/married a man. #autism
A few thoughts about that: he’s severely autistic- there’s a very good chance he will never be able to consent to any type of sex. That’s his disability. I hope I’m proved wrong but that’s what the research tells us.
Also - I don’t think these people see what we see. I see my child being dehumanized by the government, by their “advocates” and by the general public. If my son was able to consent and found someone who loved him? That’s all that matters. That’s all that sound matter.
Read 4 tweets
Você que é Autista e/ou TDAH sabe o que é "Disforia Sensível à Rejeição"?

Segue o fio onde vou te citar alguns sinais de DSR (Disforia Sensível à Rejeição)🙂⬇️
1. Você teme verificar seu e-mail/Direct ou até mesmo abrir mensagens no WhatsApp

Isso acontece por que ficamos ansiosos e com medo do tipo de conteúdo que pode estar no e-mail, direct, WhatsApp... eu tô sempre achando que tem alguém me xingando, sendo muito rude comigo,⬇️
isso nos paralisa e nos leva a fugir de abrir e ler muitas vezes mensagens que PRECISAMOS, sejam coisas de trabalho, dos nossos pais, amigos etc e na maioria das vezes passamos DIAS apavorados, criando histórias horríveis com o que pode estar nessas mensagens.⬇️
Read 17 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
@IITalk
1/4
tinyurl.com/265xy8ha
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
➡️

2/4
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

3/4
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
Stimming can be flapping, pacing, hummingIt can also be scratching down to muscle, hitting your head against a wall until you have a concussion, hitting yourself in the face, pulling out your own hair, spitting, fecal spearing #autism isn’t quirky and fun on Twitter @SamKaplun
We have worked hard with ABA therapist to redirect some of the boy’s dangerous stims - he has a scar on his cheek from scratching down to his muscle after getting a mosquito bite. We redirected it slowly with medical help to make sure while we redirected it he didn’t die
We just this summer redirected a stim of spitting snd then playing with his spit to playing with my embroidery thread so he could actually go out in public during a pandemic. It look 6 months of slow redirection
Read 9 tweets
This @OntarioNDP hopefull candidate is apparently ready to speak against medically prescribed therapy to #autism because (checks notes) he’s 18 and listens to groups funded by Warren Kinsella to support @fordnation ? Woh. That’s a lot. And @AndreaHorwath is silent. #onpoli Image
I don’t know what’s going on with @OntarioNDP and @NDP but neither @theJagmeetSingh or @AndreaHorwath have responded to requests about #autism or their candidates’ anti science approach. #onpoli
And journalists don’t seem to think our kids are important enough to ask questions about this anti science and ableist current in the @OntarioNDP @NDP @ColinDMello @MercedesGlobal et al.
Read 3 tweets
Hey @StevenDelDuca @AndreaHorwath @fordnation - do you know that feeling when you don't have room on your credit card to pay for your son's #autism therapy? This is the fault of all three of you for ignoring our children and not caring about their healthcare access. #onpoli
@StevenDelDuca @AndreaHorwath @fordnation the boy is in 1 hour of speech and 4 hours of ABA a week (and he needs more but that's what we can do right now). That works out to almost $700 a week on my credit-card. Families can't afford this - and are watching the fact that none of you are talking about it.
What would you do if you had to pay for a child's access to care and couldn't? What would you think of the leaders of the parties who didn't care to even talk about it? Imagine what your family would think of you if they were in our position? #autism #onpoli
Read 4 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
What is #autism to me?

It's struggling for words that won't come.

Words that would capture my thoughts. Fully express what I'm thinking & feeling.

It's being locked in knots. Ripping at my brain in frustration.

Autism is screaming inside.

1/
What is #autism to me?

It's ALWAYS being on the outside looking in.

It's being soul-crushingly alone.

It's being an alien among humans.

It's feeling like I need degrees in psychology, sociology & anthropology to even BEGIN to understand people.

I've none of that.

2/
What is #autism to me?

It's living in constant fear.

Fear of being hated. Fear of being abandoned. Fear of being alone.

Everyone loves to say autism should be accepted.

Until you rub people the wrong way. Then you're just a jerk no-one likes.

3/
Read 8 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
1/
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
2/
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
3/
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
I found the boy stuck climbing a bookshelf. He saw me and just stopped holding on. I caught him but now have a bloody nose. #autism
And then he went right back up.
Literally just say “no I’m not rescuing you right now”. And then he fell. I hate this.
Read 3 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
“My mummy sometimes I wish my brother wasn’t autistic and he and I could just play and talk and not take him to speech therapy on a Saturday”. #autism
When we talk about mourning an #autism diagnosis this is what we are mourning. #autism
We’re not mourning who they are. We’re mourning all of the hoops and issues they will have to navigate in a world that denies and punishes their disability
Read 3 tweets
Thinking about a reply I wrote. Signs you were #autistic as a kid.

I realized whenever I answer that question, I instinctively leave out the ugly bits. The socially unacceptable bits. Fear, I suppose?

Keep reading if you want the *whole* picture. (1/7)

I was obsessed w Legos as a kid. Beyond being toys or a hobby. Beyond a "special interest" even.

I'd get lost in building for DAYS on end. I was none too happy about having to stop for annoying things like eating, sleeping or school.

I used to scream at being made to stop. 2/
Legos lived in buckets in my closet. When I got them out, I'd gleefully dump them out on the floor in great big piles, scattered around.

I realize now that was the "chaos" #ADHD side of my brain.

And the #autism side reveled in "sorting" and "organizing" the mess. 3/
Read 7 tweets
1/10 Professionals, parents and/or Autistics: my course 'The inside of Autism' kicks off on Nov 4th 7pm (BST). Its focused on reframing the #Autism narrative from an Autistic perspective, based on current research, introducing new concepts & giving new tools
2/ I cover:
The history of Autism & the role of research, Myths, What Autism actually is (and what it isn't), Co-occurring conditions, Gender, Sex & Minority groups inc the role of racism and sexism, The Neurodiversity paradigm, The sensory system, stimming & sensory invalidation
3/ Overwhelm, 'Behaviour', Understanding Autistic communication, Anxiety & why it's so prevalent,The role of stigma and marginalisation & their impact on Identity, Autistic Masking, Autistic Burnout and poor mental health, Enablement & self-advocacy; Autistic culture;

And trauma
Read 11 tweets
I am an inpatient on a psych ward but have been in general hospital for a couple of weeks. I was told at 5:30 I have a CTR tomorrow and that I should attend via teams. I don’t think this is enough notice and not an appropriate 1/2 #mentalhealth #Autism
place to have it. I’ve said I’m not willing to attend under such circumstances but apparently it can’t be rescheduled or cancelled. Surely I’m not being unreasonable? Everyone else must have known in advance that it was happening #mentalhealth #Autism
Update: They’ve listened and it’s been cancelled and will be rescheduled. I am really pleased
Read 3 tweets
Pas une ligne de l'AFP sur ce décès survenu en décembre 2020.
#BrandyVaughan,anciennement cadre de haut niveau chez #Merck, l'un des plus puissant groupe pharmaceutique de la planète, était lanceuse d'alerte.
#whistleblower
aphadolie.com/2020/12/12/bra…
« L’#obligationvaccinale, c’est pour le profit et pas pour la #santépublique »
#BrandyVaughan
A #Whistleblower who had worked for Merck was intimidated, threatened, when she tried to unveil the truth about "#vaccines".

"we need to expose what's really going on behind the #MandatoryVaccination bill"
was one of #BrandyVaughan's last messages on her f b account. Image
Read 15 tweets
If you've met one autistic person, then you've met one autistic person ... but did you even meet them? Lethomathica means that gigantic parts of our lives are not accessible at will even to ourselves and masking is deeply ingrained in many of us.
So, if you've met an autistic person, then you've frequently only met a snapshot or public image of an autistic person. It does not make you privy to their truths or the reality of their daily lives.
When whole aspects of your being and history are not even known or accessible to yourself, it is that much easier to be taken advantage of, to be gaslit, and to inadvertently gaslight others.
Read 38 tweets

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