Lavender
@lavendertypes.bsky.social
They/them , multiple and multiply disabled nonspeaker. Flowing against static narratives. I like plants and disability justice. Profile picture by @tinytyra.bsky.social
Reposted by 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
Unfortunately autism research is behind disability research in terms of the amount of tokenism, and non-autistic parents being over-represented.
#INSAR2025
May 3, 2025 at 5:55 PM
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
Unfortunately autism research is behind disability research in terms of the amount of tokenism, and non-autistic parents being over-represented.
#INSAR2025
Reposted by Lavender
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
#INSAR2025
May 3, 2025 at 5:40 PM
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
#INSAR2025
Reposted by Lavender
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...
psmag.com/news/disable...
February 28, 2025 at 5:05 PM
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...
psmag.com/news/disable...
Reposted by Lavender
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/
www.thetransmitter.org/spectrum/cli... 1/
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.
www.thetransmitter.org
March 1, 2025 at 5:52 PM
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/
www.thetransmitter.org/spectrum/cli... 1/
Reposted by Lavender
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?
February 13, 2025 at 4:56 PM
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?
Reposted by Lavender
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.
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.
February 4, 2025 at 6:47 AM
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.
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.
Reposted by Lavender
Communicating with symbol AAC is not automatically "inferior" or "worse" than communicating without symbols.
February 4, 2025 at 6:45 AM
Communicating with symbol AAC is not automatically "inferior" or "worse" than communicating without symbols.
Reposted by Lavender
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.
February 2, 2025 at 11:47 PM
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.
Reposted by Lavender
"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
joyofj.substack.com/p/on-truth-a... #neurodiversity
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).
joyofj.substack.com
February 1, 2025 at 8:36 PM
"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
joyofj.substack.com/p/on-truth-a... #neurodiversity
Reposted by Lavender
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...
But can *we* refuse?
#AutChat
file.prentrom.com/196/LAM-Proc...
file.prentrom.com
February 2, 2025 at 9:54 PM
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...
But can *we* refuse?
#AutChat
file.prentrom.com/196/LAM-Proc...
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.
Q2: Is privacy important to you? Why?
What has happened as a result of privacy violations? What do you worry might happen (for you or others)?
#AutChat
What has happened as a result of privacy violations? What do you worry might happen (for you or others)?
#AutChat
February 2, 2025 at 10:32 PM
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.
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?’
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?’
Q1: Have you ever experienced a violation of privacy, either about your neurodivergence or because someone thought your neurodivergence made it ok? Have you seen someone else’s be violated? #AutChat
February 2, 2025 at 10:22 PM
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?’
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?’
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.
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.
Q1: Have you ever experienced a violation of privacy, either about your neurodivergence or because someone thought your neurodivergence made it ok? Have you seen someone else’s be violated? #AutChat
February 2, 2025 at 10:05 PM
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.
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
Q0: Introduce yourself! Say anything you like about yourself or your interest in #AutChat or in today's topic, privacy and privacy violations.
Quick reference for this week's #AutChat questions (please wait till they're posted to answer):
autchat.com/privacy-and-...
Quick reference for this week's #AutChat questions (please wait till they're posted to answer):
autchat.com/privacy-and-...
February 2, 2025 at 9:38 PM
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
Reposted by Lavender
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
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
February 2, 2025 at 9:04 PM
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
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
Reposted by Lavender
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
![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.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:sox6xar4qdc3ujhi5h4whtlh/bafkreiazjyxk6foryp6lzxcqbls62uaokwhjrjmnzg5uqpdimg77xrt26a@jpeg)
February 2, 2025 at 2:25 PM
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
Reposted by Lavender
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
January 31, 2025 at 9:06 PM
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
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
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
Q1: Do you currently use augmentative or alternative communication? Full-time? Part-time? What type of system? #AutChat
February 2, 2025 at 2:27 AM
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
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.
On those "Telepathy Tapes": Autistic nonspeaker Danny With Words wants to know why they are "gaining so much more attention than work driven & directed by nonspeaking autistic advocates. Do we need to be portrayed as supernatural beings to be interesting?"
www.facebook.com/dannywithwor... #autism
www.facebook.com/dannywithwor... #autism
Danny With Words
Dear Friends,
I am sharing my raw feelings about a controversial topic. Some of you have asked me about it. I am not sure if it is wise to post this publicly. However, as you presumably respect me...
www.facebook.com
February 2, 2025 at 12:59 AM
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.
Reposted by Lavender
December 17, 2024 at 5:04 AM
Reposted by Lavender
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:
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…
buff.ly
December 1, 2024 at 1:00 AM
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:
Reposted by Lavender
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:
spotfund
www.spotfund.com
November 28, 2024 at 6:00 PM
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:
Things are about to get so very bad in all kinds of ways. Fear for our communities.
be very very wary of “autism” nonprofits
parent groups without autistic leadership like Autism Speaks and, apparently, Autism One (never heard of it) want autistic people not to exist
RFK Jr is speaking their language
parent groups without autistic leadership like Autism Speaks and, apparently, Autism One (never heard of it) want autistic people not to exist
RFK Jr is speaking their language
New: Recordings from private autism conferences show Trump HHS pick Robert F. Kennedy Jr. vilifying & conspiracy theorizing about agencies he's set to lead. Videos show RFK Jr comparing CDC vaccine programs to "Nazi death camps" & calling for researchers to be jailed. www.nbcnews.com/health/healt...
November 28, 2024 at 3:21 AM
Things are about to get so very bad in all kinds of ways. Fear for our communities.
I am very scared
*States do not have to cover HCBS, meaning they can cut these programs when budgets get tight—an inevitable result if Congress cuts #Medicaid funding. ~8 million people with disabilities of all ages could lose access to the support they need to live with their spouses & families in their communities
Medicaid Facts: #Medicaid is the primary funder of long-term services and supports (LTSS). In 2022, Medicaid covered home- and community-based services (HCBS) for 7.8 million people and institutional care for 1.5 million people (1.3 million in nursing homes).
www.medicaid.gov/medicaid/lon...
www.medicaid.gov/medicaid/lon...
November 28, 2024 at 1:33 AM
I am very scared