For anyone having issues with the #ActuallyAutistic hashtag, there is also #AllAutistics and @allautistics (the latter being a recently created group that you can follow and post to).

Still having trouble with Rhode Island’s website, but this Spectrum article from 2011 explains what RI intended to do with its registry: https://www.spectrumnews.org/news/rhode-island-plans-statewide-registry-for-autism-research/

They wanted to register every Autistic person in the state – ‘an estimated 2,500 children from 1st grade through high school, as well as preschoolers in early intervention programs and adults with autism [sic]’

Despite mentioning adults here, there’s only one other mention in the article, when one of there researchers refers to ‘the support and services her kid needs’, the kid being, in the article’s words, her ‘adult son with autism [sic]’

They also intended to use ADOS, a very child-oriented diagnostic tool – it’s the one that uses the picture book ‘Tuesday’

‘Less than half a million dollars would enable the group to build a registry database and hire a three-person team to begin recruiting participants’, Daniel Dickstein of Brown University is reported as having said

#ActuallyAutistic #AllAutistics #registry

The research implications of US state autism registries (as mentioned in @dramypsyd’s petition) are hinted at in some of these, e.g.

‘to inform the planning of service delivery to children with autism and their families and to facilitate autism research’ (Delaware)

‘To identify factors that might be associated with birth defects [including being Autistic!]’ (Indiana)

‘they are instrumental in establishing significant risk factors, potential causal factors, and cellular-level research results’ (New Jersey)

The third is from this linked paper (PDF), which also helpfully discusses the positions of all eight states, including a comparison table (attached): https://www.nj.gov/health/fhs/autism/documents/2016%20overview%20of%20States%20Autism%20Registries%20Brief.pdf

#ActuallyAutistic #AllAutistics #registry #MandatedReporting

Der Brief der Autismus Klinik ist angekommen und ich bin auf der Warteliste.
Ich werde also in voraussichtlich etwa 20 Monaten den ersten Termin haben.
Mal sehen, ob dann immer noch der ICD-10-GM gilt.

#Autismus #AuDHD #AllAutistics

@actuallyautistic
#actuallyautistic
#autistic
#autism

To add another point about the history, for awhile on Twitter some #autistics began to use an alternate tag:

#AllAutistics

This was intended to correct the ambiguities of the #actuallyautistic tag, so that it was more clear that it wasn't about gatekeeping.

@Elizabeth3 Absolutely – there’s some very good participatory and neurodiversity-informed research being done at the moment

For example, I need look no further than @SueReviews’s research group a stone’s throw from me (if you’re *very* good at throwing stones – not that I condone stone-throwing in general!):

https://salvesen-research.ed.ac.uk/our-projects-1
http://dart.ed.ac.uk

#ParticipatoryResearch #neurodiversity
#ActuallyAutistic #AllAutistics

Neurodivergent grief is not like neurotypical grief, in several ways

For instance, a lot of neurodivergent people found the social expectations of grieving difficult to navigate

The study looked at remembrance (constancy and echophenomena)

The study also looked at grief and identity (including the relief of late diagnosis and masking)

Echothanatologia: repetitions centred on death (Mair et al. 2023)

(Struggling to hear)

#SARG2023 #ActuallyAutistic #AllAutistics #grief #grieving

The research here takes a trans diagnostic perspective, permitting co-occurring conditions, and values lived experience

It uses an eight-step approach to content analysis (Mayring 2022), and looks at social media posting (across six platforms) on loss: disenfranchised grief (378), bereavement, secondary loss, grieving things, Covid loss and pet loss (55)

Main way to cope with grief is taking time

#SARG2023 #ActuallyAutistic #AllAutistics #grief #grieving

Now on to Ally Mair, talking about Autism and grief

CW for this talk: grief and death

#SARG2023 #ActuallyAutistic #AllAutistics #grief #grieving

We reconvene shortly with 15-minute presentations, which I’ll add to this second thread:

David Thorpe – Autistic experiences of employment
Irene Alvarado Reinoso – Sociological exploration of the transgender Autistic experience
Ally Mair – Autism and grief
Carmen Rosas-Pérez – Experiences of 12 Autistic people with sounds and daily life acoustic environments

(Going to cut down on the number of slides I share from now on!)

#SARG2023 #ActuallyAutistic #AllAutistics #ParticipatoryResearch

Welcome underway

The majority of researchers presenting today are Autistic

#SARG2023 #ActuallyAutistic #AllAutistics #ParticipatoryResearch

This, shared by @jbenjamint, should be good news for Scottish Autistics :audhd:

https://www.inspiringscotland.org.uk/autistic-adult-support-fund/

I hope the Scottish APOs (Autistic People’s Organisations) below will have access to the fund

• Autism Understanding Scotland, https://www.autismunderstanding.scot
• Autistic Mutual Aid Society Edinburgh (AMASE), @amase
• Autistic Rights Group Highland (ARGH), https://arghighland.co.uk
• Diversified, https://www.diversified.org.uk
• Scottish Ethnic Minority Autistics (SEMA), https://sema.scot

(If any of the APOs besides AMASE has a fediverse presence, I’d love to know! Also please let me know if there are any APOs I don’t know about)

#ActuallyAutistic #AllAutistics #AutisticPeoplesOrganisations #NothingAboutUsWithoutUs

@adelinej @zeolith @Firlefanz @Sci_Fi_FanGirl @AKMA @actuallyautistic Yes, our *only* #support is our own #community. Without it/them, I would be a Big Mess.

#AskingAutistics #ActuallyAutistic
#AllAutistics
#AuDHD

I am tending toward the view that NTs are disabled when it comes to their communications (written, spoken, body-language, etc).

Autists, on the other hand, communicate clearly, meaningfully, and *honestly*.

Thoughts?

#AskingAutistics
#ActuallyAutistic
#AllAutistics
#AuDHD

I am tending toward the view that NTs are disabled when it comes to their communications (written, spoken, body-language, etc).

Autists, on the other hand, communicate clearly, meaningfully, and *honestly*.

Thoughts?

#AskingAutistics
#ActuallyAutistic
#AllAutistics
#AuDHD

My poem, “This Is A Clothespin” has 10 years of autistic history additions made since its creation in 2013

Trigger Warnings:
Ableism (internalized; medical; societal), homicide, anti-autistic discrimination, blood, COVID-19 pandemic, anti-vaxxers/anti-maskers, SI & unalive ideation

#actuallyautistic #autismacceptancemonth #allautistics #bookstodon @autisticbookclub #2SLGBTQIA #disabilityrights #poetrycommunity #writingcommunity #lucasscheelk

https://lucasscheelk.substack.com/p/this-is-a-clothespin-lucas-scheelk

#Shorts

Things are changing this April #AutismAcceptanceMonth...

#ActuallyAutistic #AutisticAdults #AllAutistics #video #shortfilm #short
@actuallyautistic @actuallyadhd https://youtu.be/g5J-H3KUfnk via @YouTube

#Shorts

Things are changing this April #AutismAcceptanceMonth...

#ActuallyAutistic #AutisticAdults #AllAutistics #video #shortfilm #short

https://youtu.be/g5J-H3KUfnk via @YouTube

Day 4 of Autism Acceptance Month

I'm reminded that my first autistic character, Jerry Espenson (Boston Legal), didn't arrive until I was 17 years old, when it aired (2005)

[& he lived! the bar was in hell!]

This episode of disability media history was brought to you by trauma!

#actuallyautistic #allautistics #autismacceptancemonth #autismacceptance #disability #disabilityrepresentation #2SLGBTQIA #bostonlegal #jerryespenson

A PRAYER FOR A NON-RELIGIOUS AUTISTIC is now available on eBook formats!

💖: Pushcart Prize nominated poet
✡️: Jewish convert story
⚠️: StoryGraph TWs
🧿: [ownvoices] & special interests as literary palate cleansers
📚: acrostic, book-spine, sonnet, free-form, list poems, etc

#bookstodon @bookstodon #poetrycommunity #writingcommunity #2SLGBTQIA #actuallyautistic #allautistics #autismacceptancemonth #lucasscheelk #ownvoices #queerart #queerbooks #Mazeldon @mazeldon

http://masonjarpress.com/chapbooks-1/a-prayer-for-a-non-religious-autistic-ebook