@ProfoundAutism
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Inclusive research and collaborative, targeted advocacy for those with profound autism.
Joined August 2022
- Tweets822
- Following150
- Followers511
- Likes250
Profound Autism Alliance retweeted
Much too generous! I've been very fortunate to have the support and help from incredibly talented and innovative people and teams over the years.
The head of Kennedy’s new autism project has roots in Iraq War and Sesame Street. A Navy veteran, Russell Shilling is also the father of two sons with autism trib.al/3AmonHI
Profound Autism Alliance retweeted
🔬 Advancing today’s biomedical research to build a healthier tomorrow involves more than publishing research results in journal.
It involves verifying those findings through scientific rigor and scrutiny, transforming promising research into discoveries upon which the world can act.
To that end, NIH has launched a new reproducibility and replication initiative rooted in one clear conviction—that discovery and independent verification are inseparable pillars of science.
Read more in my @ScienceMagazine editorial ➡️ science.org/doi/10.1126/scie…
Federal officials are rolling out a major new research effort to “transform” autism diagnosis and care.
Read more here:
ow.ly/t7mO50ZQkqo
Our Profound Autism Advocacy Network focuses on the part of the autism spectrum that requires lifelong, 24/7 care. Participate a little or a lot. It all matters.
Sign up below. 👇
profoundautism.org/advocacy/…
Kimberlee McCafferty, whose 22-year-old son Justin fell from a 3rd-floor window at the Fort Monmouth Day Program and died wrote “Had there been cameras within the building, perhaps someone would have noticed my son was not where he was supposed to be." ow.ly/pfa650ZPSst
"A group home is a therapeutic sanctuary and private residence, not a public hospital waiting room. Treating a crisis-driven behavioral episode as criminal assault fails medicine, caregiving and human dignity"
Read the complete article and take action. Links in comments.
Take action here if you live in MA: thearcofmass.quorum.us/campa…
The SPECTRA (Systems for Phenotypic Evaluation, Causal Trajectories, Response, and Agency) program takes a bold approach, anchoring autism research in objective, multi-factor measurement and computation rather than behavioral observation alone. Learn more: ow.ly/JBtF50ZOR1B
Over time, autism research has included fewer and fewer participants with profound autism. Without targeted research, our population will never have the answers, supports, and services they need. We are working to change that.
Learn more: profoundautism.org/advancing…
#profoundautism
Today, we remember September 11, 2001, and all those who lost their lives that day, and in the days and years that followed. From Lower Manhattan, to Shanksville, to the Pentagon, our hearts are with those who carry the of love those who were lost.
Research shapes more than academic journals. It shapes the systems, training, and policy that affect people's daily lives. Submit your study to connect with our community of families, clinicians, and advocates.
Share your research here: ow.ly/pWGj50ZLTuR
Our Nebraska families have been shouting this from the rooftops. Nebraska has slashed Medicaid funds for nearly 900 people with developmental disabilities after using an algorithm to determine eligibility.
Watch the report here:
nbcnews.com/video/families-i…
He was on the playground for around 40 minutes without an adult.
"Then he left from the playground at that time, again with no adult, to a neighboring neighborhood in the back, and went into a couple's home. And this couple called 911,"
lex18.com/news/covering-kent…
After receiving a terminal diagnosis of late-stage liver cancer in April last year, Jeon traveled across the country, reaching out to nearly 1,000 care facilities in hopes of finding a place that could look after his son once he was gone. ow.ly/CTxb50ZKBq5
According to the CDC, 26.7% of 8-year-olds with autism have profound autism. That's more than 1 in 4.
They face complex, often invisible challenges that demand real solutions, for them and for the caregivers who support them every day.
Learn more: profoundautism.org/advancing…
“While comments received over time can provide helpful context, this specific draft and the public comments submitted in relation to it were what the Committee was supposed to review.”
Read the full statement here: autismsociety.org/while-the-…
Profound Autism Alliance retweeted
Thread:
Thoughts on this week's IACC meeting:
For me this isn't about right or wrong, good or bad. And it's not about denying urgency.
I have been to too many funerals. I have taken the late night calls. I have searched for my son when he wandered, praying he was alive.
