Lavender

Grant: It's important to have power sharing in autism research, both in general and to them personally. #NothingAboutUsWithoutUs
Unfortunately autism research is behind disability research in terms of the amount of tokenism, and non-autistic parents being over-represented.

#INSAR2025

Kapp: People with higher support needs, who access supports through community serviced provided by Medicaid like HCBS, we as an autism community should be uniting to protect these services. Autistic #neurodiversity supporters are MORE likely to regard disability as an appropriate term.

#INSAR2025

Here's what I wrote in 2017 about this difficult day. I haven't been able (mentally) to go to a vigil since, but I carry the weight with me. Please read, come if you can, remember, and do what you can to stop this from happening again.

psmag.com/news/disable...

Clinicians must put more effort into autism-specific medical care Without it, autistic adults with high support needs like my son are missing out on treatments that could reduce their suffering and improve their quality of life.

Still true: "My high-support adult autistic son’s many medical appointments have become routine. Even so, I broke into sobs during a recent session. Despite years of consults and procedures, no one seems to know how to treat his debilitating headaches."

www.thetransmitter.org/spectrum/cli... 1/

a red-headed white woman wearing a Grogu (also known as “the Child” from The Mandalorian) headband, posing in front of a First Order fighter space craft. She is wearing a green shirt with white text reading, “speech does not make someone more human”

Grogu knows: Speech does not make someone more human! Sadly @communicationfirst.bsky.social is no longer selling these t-shirts but maybe they will bring them back?

AAC users can talk about important things.

AAC users can talk about dangerous things.

AAC users can say things that not everybody agrees with.

AAC users have the same right to freedom of expression as everybody else.

Communicating with symbol AAC is not automatically "inferior" or "worse" than communicating without symbols.

Hi, I am @motherjones.com' disability reporter. In the following weeks, I am very interested in hearing how tariff nonsense impacts getting your meds and medical equipment. My email to get in touch is jmetraux@motherjones.com. Reposts appreciated.

On truth and knowing and GLP One of the most helpful things I know about my son J is that he is a gestalt language processor (GLP).

"We do harm if we assume that unless a person has fluent language, they cannot know anything worth sharing, or that what they do share lacks meaning." On respecting and responding to autistic language and communication differences, from Louise:

joyofj.substack.com/p/on-truth-a... #neurodiversity

A4: PRC's for language activity monitoring files manual includes "It is strongly recommended that people whose communication is being monitored be clearly informed and that public use of recorded communication be anonymous."

But can *we* refuse?

#AutChat

file.prentrom.com/196/LAM-Proc...

And even when I can use AAC independently, to know the app is tracking everything I am saying with it and selling it to people is also terrifying.

I do not think enough people talk about how much privacy rights get took away from nonspeaking people. #Autchat

It is very important. Especially as a nonspeaker who needs a communication partner to talk. There are a few people who know almost everything I have said or written, because I need their help to do it. I trust my CRPs to respect my privacy, to not write down all I say, but it is still terrifying.

A mom in the group told my support person I seem agitated and asked if she could help. Said ‘I know how they get, it’s been so hard, my son has been off his (medication name) and he’s been hitting himself and being aggressive to us so much more”

Her son was right there. #Autchat

seen: so many but I will choose one.

Was at nature appreciation/‘therapy’ group for autistic adults. I was making the kind of noises I make- not upset ones, enjoying and communicating and keeping my body regulated and in motion. My body was moving in a way that maybe looked upset or ‘aggressive?’

Which has to be edited every year , every new support person has to read this before meeting me. trying to get a new SA who respects my privacy and lets me have input.

I am on a Medicaid waiver for people with developmental disabilities. This means everything I do must be wrote down, tracked, investigated all the time. Every deficit and medical issue and behavior and trauma and thing I have said. I have very little control over what is in my support plan. #Autchat

Privacy violations are so normal for me it is hard to count.

When I see a new doctor, there is a 75% chance they do not acknowlege me at all. Most new providers assume I am under full guardianship, so decide once they tell my parents something they do not need to ask for my consent after.

Hi everyone. I’m Lavender. I am a nonspeaking autistic person who gets a lot of support to communicate and to live, government and family and medical support. So privacy violations have been a constant in my life. I have a lot to say on this topic. #Autchat

A0: Hi, I'm Alyssa, I'm Autistic, and I'm a researcher.

I do research in a field where collecting full transcripts of everything people say is marketed as a *feature* and from a privacy perspective that is *horrifying.* One of many complaints I have about AAC as a field.

#AutChat

This is the front page of a fraudulent research article that purported to show a link between vaccines and autism. The word "RETRACTED" is written across it in large red letters. Wikipedia: On 28th February 1998, a fraudulent research paper by physician Andrew Wakefield and twelve coauthors, titled "Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis, and Pervasive Developmental Disorder in Children", was published in the British medical journal The Lancet.[1] The paper falsely claimed causative links between the measles, mumps, and rubella (MMR) vaccine and colitis and between colitis and autism. The fraud involved data selection, data manipulation, and two undisclosed conflicts of interest.

Today is Retraction Day, when we observe the anniversary of the retraction (Feb. 2, 2010) of the fraudulent paper that purported to show a link between vaccines and autism. 🧪#medsky

It already has and it is awful. But yes there is so much more harm that could happen. Hundreds of people having their communication taken away because of the ‘skepticism’ and harm this will lead to is one thing I am worried about.

Alongside their aides, AAC users eat boxed lunches at a table in a hotel atrium.

What would you do without your aide? Share how #MedicaidCuts would hurt you or those around you who need #Medicaid to stay in the community. We put together some resources from our amazing partners to make this easy! lnk.to/medicaid

Do you know if they are still trying to do this? I am working with Disability Rights Ohio to get help with housing and guardianship things and this would be so scary.

Going back the last 3 of these chats because I’ve figured out how to use this app better.

I am nonspeaking and use AAC full time. I use Proloquo2Go and sometimes Grid for symbol based communication, letterboard/keyboard for typing. I am supported by a partner but do not use a formal method

Thank you Danny, again. Rereading and it is making me feel better about publishing my own thing , with all my messy changing feelings on the Tapes. Thank you for opening this up in our community for making it safe to say no.

Digital painting of a beaker full of blue liquid bubbling up over the edge, turning purple as it dribbles over the edge. The beaker has a line sharpied on labelled ‘so much autism’. The fluid reaches above the line. It’s standing on a shelf, and the name Lavender is written right on the edge is the shelf.

so much autism~
This was a fun #art to make! 1.5hrs, CSP on iPad. Made for @lavisacat.bsky.social

Proud and Supported Series - Autistic Self Advocacy Network Definitions and Beyond There are many ways to identify. Everyone is different and that's good! This guide, “Definitions and Beyond,” will explain some of the ways people identify. Maybe you are…

Everyone has the right to make their own choices and that includes choices about sex! Our accessible resource “A Self-Advocate’s Guide to Safer Sex” provides information to help you make decisions you feel good about:

My trans, disabled, Indigenous friend Lilya had to spend last night in the emergency vet with their cat getting emergency surgery to save the cat who takes care of them and now they owe $600 for this. Given the racism of Thanksgiving can we raise this for them. Fundraising link here:

I am going to say this semi publicly:

I-ASC , halo soma, the Spellers Centers and other organizations that focus communication rights. need to put out a public statement against RFK like @autisticadvocacy.bsky.social did. I don’t care how many people they lose. Think it is the right thing to do.

Things are about to get so very bad in all kinds of ways. Fear for our communities.