Discover and read the best of Twitter Threads about #Autistic

Most recents (24)

Something I don't talk about much, because, tbh, I'm ashamed to some degree, and afraid ppl will bully me for it as they have in the past: I'm not only #autistic, but highly #gifted. They call ppl like me "twice gifted". Twice isolated would be more like it.
I'm a National Merit Scholar. I missed 5 questions total (together worth 3 points) on my PSAT. I absorb information, especially about science and math, like a sponge. I have an IQ just shy of 140.
I also struggle to make & keep friends. My verbal IQ subscore is 40 points lower than my PIQ subscore, making it hard to communicate my thoughts. I forget names, dates, and phone numbers like I never heard them, and have trouble remembering to do basic things asked of me.
Read 8 tweets
Respectful words. A thread.
The #BBC #Panorama show re abusive behaviour towards lovely people who need support in care homes showed a wall in the centre's building. On it, words of respect. Person-centred,rights, equality, fun, safe, choice...
And yet, the spoken words.../
...from the care staff were words of hate, of contempt. Some too shocking to write on here. The violence and abuse were very much part of that narrative. That #autistic people and people with learning disabilities were just there for staff entertainment and gossip, for abuse/
Autistic people receive a narrative of hate every day of our lives. Some of it so traditional that its writers and speakers don't even realise what they're saying, I suspect.
Deficit. Disorder. Fault. Burden. Cost. "Service User".
That narrative poisons. It kills. It harms/
Read 14 tweets
WHO definition of sexuality: it is a central aspect of humanity, and everyone has choices as long as they respect the boundaries and autonomy of others.

Sexuality is a holistic concept. It’s not just about risk reduction. It’s also about living good lives. #INSAR2019
Sexuality is for everyone, not just those who have relationships with partners.

Read 29 tweets
Now: Where Do We Go from Here? Learning How to Prevent Suicide in Partnership with Autistic People and Their Allies, led by @Sarah_NottsUni, who has been doing this for four years now. #INSAR2019…
@Sarah_NottsUni More than 10K stakeholders worldwide have identified the top 10 priorities, with equal representation of #autistic people. #suicidality #INSAR2019
@Sarah_NottsUni Now: @soundcube, #actuallyAutistic on why lived experience is key.

“I don’t live with autism. I live with my wife and two cats. I *do* live with PTSD."

#suicidality #INSAR2019
Read 26 tweets
Now: “#Autism and Related Disorders in the Context of Humanitarian Emergencies” #INSAR2019
First up: Doctors without Borders developmental pediatrician, who worked in conflict zones. Can we use remote consultations to increase support disparities?
We will be hearing from group of professionals with experience with children with developmental disabilities and humanitarian emergencies. Trauma during conflict means diagnoses/traits can be muddies. #INSAR2019
Read 42 tweets
Now at #INSAR2019 Press conference. @sbaroncohen is talking about what INSAR is: The International Society for Autism Research, the conference is in its 18th year, it’s the largest org to bring together and foster autism research. “We keep autism research healthy and growing."
@sbaroncohen SBC: 4 major challenges to autism research:

1) Going from basic to applied research
2) Hetereogeneity (also innate vs. co-occurring conditions)
3) Balancing biological vs. non-biological research
4) Making research relevant to & communicating w/autistic ppl/families.
@sbaroncohen Now: Joseph Buxbaum, INSAR scientic program co-chair, also from the Icahn School of Medicine.

Says #INSAR2019 will have more oral presentations than before, allowing more biogical, medical, and neurological sessions. Now with more biomarkers! & Stem cells!
Read 33 tweets
Autistic people, #suicide, #depression. Thread, Important.
Are you involved in testing for depression in #autistic people? Perhaps as a researcher, or a medical professional? Please be aware of the perils of using some of the standard tests. An example. Here we go.../… This example is freshly published. A team gave a suicidal autistic person a questionnaire re depression and said, "Cor, you're not depressed, mate - this must be just one of them obsessive autistic things" (or words to that effect...)/
Unfortunately for the researchers, they decided to use the Beck's Depression Inventory. Here it is if you want a link to a version.… It asks questions, and the person chooses the response that is most accurate. It's not designed for autistic people./
Read 9 tweets
Thinking about the importance of #ownvoices to me as an #actuallyautistic reader. Keep in mind, I love so many non-own voices books and authors. But for those who are neurotypical, cis het white readers, this might help you understand the movement from a different perspective.
I grew up surviving by mimicry while also afraid to be seen by people. My wife, also #autistic, is an observer. I am a hider. I was afraid to be a target. So I learned to be neurotypical by reading anything and everything I could. I didn't know that was my reason though.
Now, as a 40 year old, I understand and do it purposely. I've learned to act more sexually interested than I may be, not as a negative, but to make my wife (or partner at the time) know that I do want to be there, but #asexuality means I experience it differently.
Read 10 tweets
Tomorrow, April 24, is a day of action for our community—one in which you can take action to #StopTheShock, and call for an end to the torture of #autistic & disabled people at the Judge Rotenberg Center (JRC) in Massachusetts. How? @autselfadvocacy
is on it. #neurodiversity
@autselfadvocacy First, background: "On April 24, 2014, @US_FDA held a hearing on the use of electric shock torture at the Judge Rotenberg Center. After concluding the JRC’s electric shock devices cannot be used w/o causing significant harm, the FDA began to work toward banning the devices.” 2/
@autselfadvocacy @US_FDA "Five years later, we are still waiting for the ban. This April 24th, the disability community is marking the fifth anniversary of the hearing by hosting wait-ins across the nation to demand the immediate release of the ban on electric shock devices” #StopTheShock 3/
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Listening to @stevesilberman and @JHMarble in conversation about #autism and #neurodiversity at @square! Will be Live-tweeting as much as possible. :)
@stevesilberman @JHMarble @Square Steve is talking about the origins of #NeuroTribes in the early aughts, and how before he began his research he though #autism was rare. And how the conspiracy theories about causation were really running rampant.
@stevesilberman @JHMarble @Square He then wrote his classic article The Geek Syndrome, talking about how some autistic people were finding refuge in the Tech industries of Silicon Valley — and would often have #autistic offspring.
Read 52 tweets
1) A year ago today I was officially DX #Autistic at the age of 36. I spent most of my life knowing I was somehow fundamentally different to people around me but didn’t know how to explain it beyond saying “I’m different” #ActuallyAutistic #Autism
2) Prior to official DX I was Self DX for about 18 months. I will forever be grateful to the #ActuallyAutistic community who gave me support and didn’t use my lack of an official DX to insult, bully and exclude me. God knows I’ve experienced enough of that sort of behaviour ...
3) ... in my life from people who considered me weird, a freak and abnormal. I didn’t Self DX as autistic because it was “trendy” or “fashionable”. I wasn’t a “fraud”, I wasn’t trying to “appear more interesting”, I wasn’t “impersonating a disability” or seeking “attention”
Read 12 tweets
Well, here it is, #WorldAutismAwarenessDay. So I wish to remind the world that #autism has been recognized for only about the past 70-some years, but people have been #autistic a lot longer than that.

So now I wish to ask the world:

#Autistic people have made significant scientific advances throughout history, most notably in medicines, technologies and energy sources that we unthinkingly use every day.

Many autistic people have elevated senses, and are likely to react unexpectedly and poorly if they're overstimulated (i.e. meltdown).

Read 11 tweets
A few important messages I presented at this weeks conference #AutismPostDiagnosis

“Support for Autistic people needs to be on their terms not an imposed assumption or guess

as that may harm them”

A few important messages I presented at this weeks conference #AutismPostDiagnosis

“It’s better to talk with #autustic people than to talk for autistic people that way you learn authentically

Otherwise you may harm us”

A few important messages I presented at this weeks conference #AutismPostDiagnosis

“Others deciding what’s in an autistic persons best interest may be contrary to what interests an autistic person”

Read 8 tweets
So yesterday my boss & mentor thought I should attend my 1st ever press conference.

As we talked on the walk over to the @IWKHealthCentre I told her about when I was 14 I ran away from home. When I was brought back by the Police, my parents took me to the IWK.

Our family was +
In total crisis.

We spent the day at the @IWKHealthCentre. I remember it being a lot of waiting. Answering a lot of questions.

While there I told the person who was doing the intake that I was a danger to myself & my family.

My mother cried a lot.

We were sent away and
only because my mom had a good job and insurance we were able to seek help privately.

I've hated the IWK my entire life. It's a bad memory. So going there the same week I turned 50 was a bit of a reclamation for me.

The @nsgov was making an announcement of a pilot project
Read 10 tweets
Confidential stuff and #autism. A quick thread.
Good to make the acquaintance of a researcher on here who wanted to talk about confidential data. I want to talk about this, because there's an aspect of this that doesn't match. Here we go.../ ctd
In my national and international roles, I have to keep information confidential. There are strict laws, strict professional regulations. In autism research, lots of rules around keeping participants anonymous, etc. And far as the eye can see..../
..we have parents and carers of #autistic children parading their child in front of the public, by name, with their photo. No detail is spared. The child's toilet habits discussed, the child's meltdowns videoed for public viewing & put online. All without that child's consent/
Read 13 tweets
Real question. We know what we DON'T want to see from #autistic characters in film & tv (hold the puppet jokes pls), but what DO we want to see? Who do you want to watch and what's happening to them?
Eagerly waiting for aaalllll the comments. This is it. This is the time and place to speak your mind and be heard by people who can actually make a difference. Come thru #ActuallyAutistic #AskingAutistics #DisabledTwitter #DisabilityPride #Neurodiversity
Thanks everyone! You really came thru on this. I have LOTS of great input to share and responses to give to those inevitable questions. You've got my back and I've got yours! Here's to more of us, better represented, on screens in the near future. 🤞🏽✊🏽🎬
Read 3 tweets
#DrivingWhilstAutistic. A short thread.
You may have seen some mentions today, here, or in the Press. About the #DVLA wanting to bring in hundreds of thousands of #autistic #drivers for questioning.
Why have some of us spent a weekend trying to seek justice? /ctd
Because it's about love.
It's about dignity.
It's about the difference between being able to earn a living, and being crushed.
About a group so marginalised, and so 'othered'. So desperate to survive from one day to the next.../ctd
It's about a faceless organisation saying, "Hey, - let me see - how did you get that driving licence? Surely some mistake. People like you shouldn't have things like that. Give it here. Let us force you through some more humiliation to test whether you are worthy"
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I want to talk about what it's like to be the sibling of someone "unwanted" in society & the parent of a kid with #ASD. This is a thread about neuro disorders; how cruel society is; why parents of kids with #autism fight like they do and how this fighting impacts family dynamics.
My sister, Jen, is Developmentally and Mentally Delayed (DMD). She's 46. She is my parents' retirement. And my parents are tired. At 71 and 72, they spend each day ensuring Jen's mental, medical & physical needs are met. It's exhausting.
I am my mom's rock.
I listen to her cry.
I'm crying as I type this out because I feel so many people don't fully, nor want to understand why parents of #autistic kids are so angry at the government. My whole life has been spent watching my parents fight. Fight for inclusion. Fight for funding. Fight for support.
Read 25 tweets
Damn do I have some things to say about what passes for #SpecialEd in the communities called out with #ExposeChristianHomeschooling. See, I just figured out I'm #ActuallyAutistic. My twin siblings were diagnosed at age 2. one told them until they were 20 years old.
It was the late 90's. Neighbors were distrustful of us homeschoolers, and church ppl could sense something was off. So the last thing my parents were going to broadcast was that the twins were deeply disabled, and they were refusing to accept help offered by the public schools.
My #autistic siblings got a couple forms of therapy until age 4, and then we "did therapy at home". What we really did was escape the scrutiny of medical mandatory reporters who were already telling us the twins needed in-home therapy options from, again, the public schools.
Read 17 tweets
The anti-vax movement has been listed by WHO as one of its top 10 health threats for 2019…

#WeThePeople WILL WIN!!!🙏🏻♥️
#QAnon #MAGA @WhiteHouseHstry
@realDonaldTrump ’s new @HHSGov department may BAN #MandatoryVaccinations nationwide and restore health and religious freedom…

#QAnon #MAGA #WeThePeople WILL WIN!!!🙏🏻♥️
@realDonaldTrump @WhiteHouseHstry #vaccines #antivax #AntiVaxxers
#BillGates' Former Doctor Says Billionaire ‘Refused To Vaccinate His Children’…

#QAnon #MAGA #WeThePeople WILL WIN!!!🙏🏻♥️
@realDonaldTrump @WhiteHouseHstry #vaccines #antivax #AntiVaxxers
Read 21 tweets
What’s that you say? I haven’t tweeted in a few days about this AMAZING JOB w @AutisticaUK & @turinginst that I’d love for you to apply for or share with anyone you know?

GO ON THEN. A thread about our values and project outcomes! 🌟🙌🏿🙌🏾👩🏻‍💻👩🏿‍💻👨🏼‍💻👨🏾‍💻😬🥰💖🥳…
The values are attached as a pdf to the job description linked above. Here’s the direct link:…

Before I dig into them I want to give a quick shout out to Georgia Aitkenhead who wrote the first draft based on our long conversations. THANK YOU Georgia!
The values are only loosely ordered. Don’t read too much into which ones come first etc. They’re ALL important.

When you apply for the job PLEASE address the values in your cover letter. It’s an essential requirement that you have a commitment to these values.
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Great question from @pandamakes about the @AutisticaUK @turinginst #ResearchAssociate JOB that you should all be applying for (and telling your friends about).…

I'm going to answer it in a little thread 👇🏼
What do I mean by a "fine-grained consent model"? At the highest level it's pretty simple: it means I want to give all the participants control over their data.

What does that mean in practise?
In this #CitizenScience project we'll be collecting experiences about the challenges that #Autistic people have when navigate the environment.

For example, is it very stressful to take the tube? (Yes!) Are there times that are particularly bad? (Yes!) What are the workarounds?
Read 14 tweets
The one autism & parenting approach I want folks to absorb for 2019: if your #autistic child is violent or aggressive then that usually means something is really really wrong with them, health or environment-wise, and you really need to figure out what it is—for everyone’s sake.
It can be really, really hard to figure out the source of an autistic kid’s (or adult’s) extreme distress. But you know what makes it harder? People assuming aggression is "because of autism,” & not because something is wrong. And then so much avoidable suffering happens.
This is why you don’t want to listen to #autism “experts" who recommend “extinction,” punishments or aversives for kids who are aggressive, without even bothering to figure out why they might be in pain or other distress—because that is ignoring/punishing someone who needs help.
Read 10 tweets
A little thread telling you one of my motivations for this #CitizenScience collaboration between @AutisticaUK and @turinginst.

It’s about how non-autistic folk can adjust our behaviour to make places easier for #autistic people to live and work.

Job ad:…
In 2016 I was selected to attend #OpenCon @open_con - a conference to support #EarlyCareer researchers in #OpenData #OpenAccess and #OpenEducationalResources.

We were asked to watch a couple of videos before arriving in #DC to make sure we were all on the same page.
The video/webinar that stuck with me the most was the one on #Diversity, #Equity and #Inclusion in the #Open community.

And in particular the section by @pennyb which starts around 15:30

Read 10 tweets

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