Sarah Louise Curtiss
@sarahlcurtiss.bsky.social
Assistant Professor of Education at the University of Delaware doing community-based research with autistic youth and their families on topics like #sexed #socialskills #mealtimes #transition. Check out my work here: https://autismincontext.org/
Pinned
New public alert 🚨
Really proud of this work with Dr. Melissa Stoffers available open access rdcu.be/d0gLX
Really proud of this work with Dr. Melissa Stoffers available open access rdcu.be/d0gLX
Reposted by Sarah Louise Curtiss
Advocates for Youth says that it can’t serve marginalized young people and adhere to the president’s executive orders, restrictions and censorship on race and gender.
Why this nonprofit made a $1.2 million decision to reject federal funding under Trump
Advocates for Youth says that it can’t serve marginalized young people and adhere to the president’s executive orders, restrictions and censorship on race and gender.
19thnews.org
May 7, 2025 at 1:05 PM
Advocates for Youth says that it can’t serve marginalized young people and adhere to the president’s executive orders, restrictions and censorship on race and gender.
Reposted by Sarah Louise Curtiss
this is legitimately evil
Just to be clear, this is a violation of the fundamental ethical principle in clinical trial design called "equipoise."
Equipoise means that no-one is exposed to excess risk just to test the therapy. That's specifically *why* vaccine trials don't use placebo arms.
Ethical violation as POLICY.
Equipoise means that no-one is exposed to excess risk just to test the therapy. That's specifically *why* vaccine trials don't use placebo arms.
Ethical violation as POLICY.
Robert F. Kennedy Jr will require all new vaccines to undergo placebo testing, WaPo reports
U.S. Health and Human Services Secretary Robert F. Kennedy Jr intends to shift the way vaccines are tested, The Washington Post reported on Wednesday, citing a spokesperson from the HHS.
www.reuters.com
May 1, 2025 at 8:33 PM
this is legitimately evil
This is scary on so many levels it’s hard to know where to start.
People might think something like this already exists—you hear about rates of autism increasing and think the government is keeping track.
That’s not at all how it works.
Autism is the test case for eroding our right to privacy.
People might think something like this already exists—you hear about rates of autism increasing and think the government is keeping track.
That’s not at all how it works.
Autism is the test case for eroding our right to privacy.
An autism "registry" culled from private medical records could potentially violate federal privacy laws and runs the risk of abuse.
It also harkens back to a time when disabled people were labeled, segregated, and excluded. We won't go back.
It also harkens back to a time when disabled people were labeled, segregated, and excluded. We won't go back.
RFK Jr’s autism study collecting Americans’ private medical records
The National Institutes of Health claims it is fulfilling RFK’s promise to find cause of autism by September
www.theguardian.com
April 24, 2025 at 11:21 AM
This is scary on so many levels it’s hard to know where to start.
People might think something like this already exists—you hear about rates of autism increasing and think the government is keeping track.
That’s not at all how it works.
Autism is the test case for eroding our right to privacy.
People might think something like this already exists—you hear about rates of autism increasing and think the government is keeping track.
That’s not at all how it works.
Autism is the test case for eroding our right to privacy.
This is the program that I teach in and this article makes me quite proud 😊 www.cehd.udel.edu/centering-re...
Centering Relationships in Teaching - College of Education & Human Development
As long as University of Delaware alum Sara Colmorgen, EHD14, 15M, can remember, she wanted to be a teacher. As Colmorgen recalls fondly, she was “that sister who made [her] brother play school, much ...
www.cehd.udel.edu
April 23, 2025 at 12:57 PM
This is the program that I teach in and this article makes me quite proud 😊 www.cehd.udel.edu/centering-re...
Reposted by Sarah Louise Curtiss
Breast cancer diagnoses rose by over 300% between 1973 and 1992.
Was there a breast cancer epidemic?!
NO.
Mammograms were implemented for screening in 1976.
PREVALENCE is a function of being able to correctly diagnose something.
This is also about autism.
Was there a breast cancer epidemic?!
NO.
Mammograms were implemented for screening in 1976.
PREVALENCE is a function of being able to correctly diagnose something.
This is also about autism.
April 21, 2025 at 10:14 PM
Breast cancer diagnoses rose by over 300% between 1973 and 1992.
Was there a breast cancer epidemic?!
NO.
Mammograms were implemented for screening in 1976.
PREVALENCE is a function of being able to correctly diagnose something.
This is also about autism.
Was there a breast cancer epidemic?!
NO.
Mammograms were implemented for screening in 1976.
PREVALENCE is a function of being able to correctly diagnose something.
This is also about autism.
Do you know how hard it is to get these organizations on the same page?
ASAN, Autistic Women & Nonbinary Network, the Autistic People of Color Fund, Autism Society of America, Autism Speaks, The Arc, and others stand united: Autistic people deserve respect, support, and science-based policy, not dangerous disinformation. autisticadvocacy.org/2025/04/lead...
Leading Autism Organizations Release Joint Statement on Upholding Scientific Integrity and Supporting the Autism Community - Autistic Self Advocacy Network
April 17, 2025, Washington, D.C. – As national organizations dedicated to advancing the well-being of Autistic individuals, the Autistic Self Advocacy Network, Autism Society of America, Autism…
autisticadvocacy.org
April 18, 2025 at 9:24 PM
Do you know how hard it is to get these organizations on the same page?
If I had a dollar for every time someone falsely spread (and profited from) autism misinformation, I’d give it all to the services that Autistic people actually wanted and millions of people’s lives would be better instead of worse.
Secretary Kennedy falsely called autism a “preventable epidemic” and ignored decades of science. Autism is not a disease — we are born autistic and remain autistic our whole lives. The real crisis is his war on our rights, care, and existence.
ASAN Statement on Updated Autism Diagnosis Numbers Amidst Attacks on Autistic People - Autistic Self Advocacy Network
Today, the Centers for Disease Control and Prevention released the Autism and Developmental Disabilities Monitoring (ADDM) Network report. This report estimates how many autistic 8-year-olds there…
autisticadvocacy.org
April 18, 2025 at 9:21 PM
If I had a dollar for every time someone falsely spread (and profited from) autism misinformation, I’d give it all to the services that Autistic people actually wanted and millions of people’s lives would be better instead of worse.
Reposted by Sarah Louise Curtiss
Our paper won a Best Paper Award at #chi2025 ! It challenges the idea that Deaf tech should only be assistive. It presents alternative narratives that center deaf lives and show why we need Deaf-centred design in tech. @robinxtech.bsky.social @katta.bsky.social
programs.sigchi.org/chi/2025/pro...
programs.sigchi.org/chi/2025/pro...
Conference Programs
programs.sigchi.org
April 2, 2025 at 5:51 AM
Our paper won a Best Paper Award at #chi2025 ! It challenges the idea that Deaf tech should only be assistive. It presents alternative narratives that center deaf lives and show why we need Deaf-centred design in tech. @robinxtech.bsky.social @katta.bsky.social
programs.sigchi.org/chi/2025/pro...
programs.sigchi.org/chi/2025/pro...
This is digital book burning connect.ala.org/acrl/discuss...
Upcoming changes to ERIC from an evidence synthesis perspective | Evidence Synthesis Methods Interest Group
Colleagues,If you use ERIC for evidence synthesis, there are some things you should know with the ongoing changes at Department of Education and specifically
connect.ala.org
March 31, 2025 at 9:49 PM
This is digital book burning connect.ala.org/acrl/discuss...
“Reorganizing” means eliminating the Administration for Community Living (ACL). The ACL supports the deinstitutionalization of people with disabilities and the elderly. Institutions still exist in America and their (re)expansion is celebrated by the eugenicists who run this administration.
March 28, 2025 at 11:33 AM
“Reorganizing” means eliminating the Administration for Community Living (ACL). The ACL supports the deinstitutionalization of people with disabilities and the elderly. Institutions still exist in America and their (re)expansion is celebrated by the eugenicists who run this administration.
Whenever this administration does anything egregiously stupid it’s to divert the narrative from something egregiously amoral. The more horrendous things they do, the more they’ll up the ante on the distractions—that’s not to say this isn’t dangerous in and of it’s self.
“A mack-truck-sized breach”: @jeffreygoldberg.bsky.social discusses being accidentally added to a Trump administration group chat planning military strikes.
Read more in The Atlantic Daily: theatln.tc/0VASTR78
Read more in The Atlantic Daily: theatln.tc/0VASTR78
A Conversation With Jeffrey Goldberg About His Extraordinary Scoop
How The Atlantic’s editor in chief found himself in a group chat with Trump-administration officials who were planning an attack on Yemen
theatln.tc
March 24, 2025 at 11:44 PM
Whenever this administration does anything egregiously stupid it’s to divert the narrative from something egregiously amoral. The more horrendous things they do, the more they’ll up the ante on the distractions—that’s not to say this isn’t dangerous in and of it’s self.
Excited to read this!
Just published
Fearon, B., Pearson, A., & Kapp, S. K. (2025). Exploring the social and emotional impact of puberty and adolescence on autistic people assigned female at birth. Autism in Adulthood. doi.org/10.1089/aut....
Fearon, B., Pearson, A., & Kapp, S. K. (2025). Exploring the social and emotional impact of puberty and adolescence on autistic people assigned female at birth. Autism in Adulthood. doi.org/10.1089/aut....
Exploring the Social and Emotional Impact of Puberty and Adolescence on Autistic People Assigned Female at Birth | Autism in Adulthood
Background: Emerging research suggests that puberty and adolescence may be particularly difficult for autistic people assigned female at birth (AFAB), but there is currently very little exploration of this transition from a lived experience perspective. In this study, we aimed to retrospectively examine firsthand accounts of puberty and adolescence among AFAB autistic people, the first study to our knowledge to broadly do so. Methods: We conducted semi-structured interviews with 17 autistic people AFAB about their personal experience of puberty and adolescence. We used reflexive thematic analysis to generate themes from the data. Results: We developed three main themes from the data. Theme 1, “The overwhelming nature of puberty,” focused on issues such as distressing bodily changes and sensory discomfort (e.g., menstruation). Theme 2, “Navigating the adolescent world,” focused on the experience of feeling different, trying to cope with not fitting in, and finding support in others. Theme 3, “Victimization experiences,” highlighted the prevalence of social and sexual violence against our participants. Conclusions: Overall, our findings suggest that puberty and adolescence can be an especially difficult time for autistic people AFAB. In addition to bodily changes such as menstruation, dealing with sensory discomfort and a rapidly changing social landscape can result in extreme distress.
doi.org
March 21, 2025 at 8:19 PM
Excited to read this!
Reposted by Sarah Louise Curtiss
Walz: "The idea that the secretary of education would not know what IDEA is -- individuals with disability in education act -- that's like your mechanic not knowing how to put air in your tire. And she's in charge of this nation's education progress. It is catastrophic."
March 13, 2025 at 12:35 AM
Walz: "The idea that the secretary of education would not know what IDEA is -- individuals with disability in education act -- that's like your mechanic not knowing how to put air in your tire. And she's in charge of this nation's education progress. It is catastrophic."
My guess is these guys knew they were going to take some “big” hits at first but that’s the price you pay for an everlasting oligarchy. 🤷🏻♀️
NEW: Five of the billionaires who attended Donald Trump's inauguration have lost a combined $210 billion in wealth since then, according to the Bloomberg Billionaires Index
Billionaires at Trump’s Swearing-In Have Since Lost $210 Billion
As Donald Trump took the oath of office on Jan. 20, he was flanked by some of the world’s wealthiest people. The billionaires present that day — including Elon Musk, Jeff Bezos and Mark Zuckerberg — h...
www.bloomberg.com
March 11, 2025 at 11:35 AM
My guess is these guys knew they were going to take some “big” hits at first but that’s the price you pay for an everlasting oligarchy. 🤷🏻♀️
This is not just a waste of taxpayer dollars. It takes money away from projects Autistic people care about—research that supports Autistic people to thrive and identifies/dismantles systemic barriers. Not to mention, at this stage of the game, I would not trust the people doing the research.
It has been shown again and again that vaccines do not cause autism. The CDC's proposed study is a waste of time and resources that could be spent on research that would actually help autistic people.
Exclusive: U.S. CDC plans study into vaccines and autism, sources say
The U.S. Centers for Disease Control and Prevention is planning a large study into potential connections between vaccines and autism, two sources familiar with the matter told Reuters, despite extensive scientific research that has disproven or failed to find evidence of such links.
www.reuters.com
March 10, 2025 at 10:55 PM
This is not just a waste of taxpayer dollars. It takes money away from projects Autistic people care about—research that supports Autistic people to thrive and identifies/dismantles systemic barriers. Not to mention, at this stage of the game, I would not trust the people doing the research.
Reposted by Sarah Louise Curtiss
"Opposing forced sterilization means reckoning with how disabled people are viewed as parents. After all, more than 40 states allow disability to be used as grounds for parental termination, and disabled parents are at a higher risk of being monitored by CPS."
www.motherjones.com/politics/202...
www.motherjones.com/politics/202...
Forced sterilization of disabled people isn't a relic of the past
In most states, eugenics-era laws still let doctors sterilize disabled patients—even against their will.
www.motherjones.com
March 1, 2025 at 5:47 PM
"Opposing forced sterilization means reckoning with how disabled people are viewed as parents. After all, more than 40 states allow disability to be used as grounds for parental termination, and disabled parents are at a higher risk of being monitored by CPS."
www.motherjones.com/politics/202...
www.motherjones.com/politics/202...
Reposted by Sarah Louise Curtiss
The first measles death in the US in a decade -- the tragic, preventable death of a child whose parents chose not to protect them with vaccination -- should spark an immediate nation-wide campaign to ensure all children are protected against preventable diseases. Anything less is unconscionable.
February 26, 2025 at 7:36 PM
The first measles death in the US in a decade -- the tragic, preventable death of a child whose parents chose not to protect them with vaccination -- should spark an immediate nation-wide campaign to ensure all children are protected against preventable diseases. Anything less is unconscionable.
Reposted by Sarah Louise Curtiss
This is easy, this is quick, and this is something legislators will pay attention to
If you live in Delaware and are fed up with the wholesale surrender of our government and our courts to Elon Musk, here is something you can do: actionnetwork.org/letters/stop...
February 20, 2025 at 4:37 PM
This is easy, this is quick, and this is something legislators will pay attention to
Reposted by Sarah Louise Curtiss
The measles outbreak in Texas is reminding me of the public letter Roald Dahl wrote about losing his daughter to measles in 1962, just before the vaccine was publicly available.
February 15, 2025 at 5:49 PM
The measles outbreak in Texas is reminding me of the public letter Roald Dahl wrote about losing his daughter to measles in 1962, just before the vaccine was publicly available.
Reposted by Sarah Louise Curtiss
Excellent 🧵 on this evening's NIH announcement of a dramatic reduction in indirect rates for research institutions, which amounts to a generational restructuring of the US research and development ecosystem. These cuts are effective immediately, not just for new grants but for existing ones.
6. The policy does not just affect funding going forward. All existing NIH grants will have their indirect rates cut to 15% as of today, the date of issuance.
For a large university, this creates a sudden and catastrophic shortfall of hundreds of millions of dollars against already budgeted funds.
For a large university, this creates a sudden and catastrophic shortfall of hundreds of millions of dollars against already budgeted funds.
February 8, 2025 at 12:44 AM
Excellent 🧵 on this evening's NIH announcement of a dramatic reduction in indirect rates for research institutions, which amounts to a generational restructuring of the US research and development ecosystem. These cuts are effective immediately, not just for new grants but for existing ones.
Reposted by Sarah Louise Curtiss
New — The National Center for Missing & Exploited Children (NCMEC) was told this week by DOJ that they'd lose their funding if the org didn't remove any mentions of LGBTQIA+ issues from their public materials, I've learned. Staff were told they need to deadname trans kids in their reports to comply.
February 7, 2025 at 3:30 AM
New — The National Center for Missing & Exploited Children (NCMEC) was told this week by DOJ that they'd lose their funding if the org didn't remove any mentions of LGBTQIA+ issues from their public materials, I've learned. Staff were told they need to deadname trans kids in their reports to comply.
Reposted by Sarah Louise Curtiss
NEW — DOGE now has full access to HHS Payment Management System, I’ve learned.
The system distributes almost $1 trillion per year in grants (largest in the govt) and supports all of NIH, CDC + many other public health initiatives. Musk guy Luke Farritor is actively delaying payments to recipients.
The system distributes almost $1 trillion per year in grants (largest in the govt) and supports all of NIH, CDC + many other public health initiatives. Musk guy Luke Farritor is actively delaying payments to recipients.
February 5, 2025 at 6:00 PM
NEW — DOGE now has full access to HHS Payment Management System, I’ve learned.
The system distributes almost $1 trillion per year in grants (largest in the govt) and supports all of NIH, CDC + many other public health initiatives. Musk guy Luke Farritor is actively delaying payments to recipients.
The system distributes almost $1 trillion per year in grants (largest in the govt) and supports all of NIH, CDC + many other public health initiatives. Musk guy Luke Farritor is actively delaying payments to recipients.
Also true for complying with the ADA.
I know that all these institutions know how to push back because when Obama directed them to enforce pre-existing Title IX law, universities said no.
They flat out refused until there was a working group and specific guidelines. And even then, they *still* refused.
They flat out refused until there was a working group and specific guidelines. And even then, they *still* refused.
February 1, 2025 at 4:18 PM
Also true for complying with the ADA.
And blaming people with intellectual disability because why not if you’re the worst.
Here's Trump's order pinning blame for the DCA crash on Obama, Biden, women, and people of color
January 30, 2025 at 11:06 PM
And blaming people with intellectual disability because why not if you’re the worst.