[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Autism Speaks launches Autism Care Network to improve autism care across North America
First of its kind learning health system for autism connects 20 sites to bring better autism care to communities faster
NEW YORK, April 28, 2021 /PRNewswire/ — Today, Autism Speaks announces the launch of the Autism Care Network, the first and only learning health network of its kind focused on bringing better autism care to communities, faster. A groundbreaking partnership of 20 premier autism centers in North America, brought together by Autism Speaks and funding partners, the Autism Care Network aims to transform how better care is developed for people with autism and their families.
The Autism Care Network is supported by Autism Speaks, Health Resources Services Administration (HRSA) Autism Intervention Research Network on Physical Health, the J. Donald and Laurelle Lee Family Foundation and the National Patient-Centered Clinical Research Network (PCORnet).
As a learning health network, the Autism Care Network will deliver faster implementation of best practices and research findings about autism care. Network sites collect data from patient visits, test what treatments deliver the best outcomes and deliver new knowledge to Network partners and community providers so they can make the right decision for their patients.
Built on more than a decade of success in improving autism care, the Autism Care Network combines this success with an innovative learning health system model to rapidly deliver better autism care practices. The Network brings people on the spectrum and their families, researchers and healthcare teams together to find solutions that improve care and quality of life years earlier than traditional research.
“At each center, we work directly with children with autism and their families to find out what they need, and through collaboration with providers and researchers across the Network, use patient data to learn which treatments work and who they work for,” said Donna Murray, Ph.D., vice president of clinical programs at Autism Speaks, a founding leader of the Network. “That information gets back to providers through the Network, and centers practice these methods and push that information into their communities to get the right care to the right patient at the right time.”
A learning health system uses real-time clinical information from patient records, allowing network sites to capture what patients and families are sharing as concerns with their providers. Using a continuous improvement loop, this discovery platform allows researchers to track treatments and which patients they helped.
“Traditional research takes up to 17 years to be put into practice in a provider’s office,” said Karen Kuhlthau, Ph.D., professor of pediatrics at Massachusetts General Hospital and director of the Autism Care Network’s research coordinating center. “With patient and family needs driving where we focus our efforts, and a system that lets us answer these questions quickly, the Autism Care Network will accelerate the process of moving best practices identified by research into the clinical setting to deliver more personalized and effective care.”
Because many people with autism and their families have struggled to access quality autism services where they live, on top of the challenges due to COVID, the Network is uniquely poised to reach underserved groups with data-driven solutions that reach families at the local level.
“As healthcare teams work with individuals and families on the spectrum, they can access better care practices based on a more diverse, representative clinical research population to answer questions and create solutions for everyone, including underserved communities,” said Daniel Coury, M.D., developmental behavioral pediatrician at Nationwide Children’s Hospital in Columbus, Ohio, and medical director of the Autism Care Network.
As a consortium that is focused on ongoing collaboration, learning and dissemination of best practices, the Autism Care Network will transform the delivery of quality, evidence-based autism care to people on the spectrum regardless of their location, which leads to improved health outcomes and quality of life.
The 20 Autism Care Network sites are:
- Children’s Hospital Los Angeles
- Children’s Hospital of Philadelphia
- The Kelly O’Leary Center for Autism Spectrum Disorders at Cincinnati Children’s Hospital Medical Center
- The Lurie Center for Autism at the Massachusetts General Hospital for Children
- Nationwide Children’s Hospital, Columbus, Ohio
- Holland Bloorview Kids Rehabilitation Hospital, Toronto
- University of Alberta and Glenrose Rehabilitation Hospital
- The Center for Autism & Neurodevelopmental Disorders at the University of California — Irvine
- University of Missouri – ECHO Autism Communities
- The Center for Autism and Developmental Disorders at the University of Pittsburgh Medical Center
- Vanderbilt Kennedy Center at Vanderbilt University Medical Center
- The Division of Developmental and Behavioral Pediatrics at the University of Rochester Medical Center
- Phoenix Children’s Hospital
- Prisma Health Children’s Hospital-Upstate SC
- University of Nebraska Medical Center, Munroe-Meyer Institute
- University of Virginia Children’s Hospital-Division of Neurodevelopmental and Behavioral Pediatrics
- University of Wisconsin-Madison, Waisman Center
- Hospital for Special Care, New Britain, Connecticut
- The Eunice Kennedy Shriver Center at University of Massachusetts Medical School, Center for Autism and Neurodevelopmental Disorders
- MetroHealth Autism Assessment Clinic, Parma, Ohio
To learn more about the Autism Care Network and to visit a center near you, please visit https://www.autismspeaks.org/autism-care-network.
Autism, or autism spectrum disorder, refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. We know that there is not one autism but many subtypes, and each person with autism can have unique strengths and challenges. A combination of genetic and environmental factors influences the development of autism, and autism often is accompanied by medical issues such as GI disorders, seizures and sleep disturbances. Autism affects an estimated 1 in 54 children.
About Autism Speaks
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. To find resources, join an event or make a donation, go to www.autismspeaks.org. Learn more by following @autismspeaks on Facebook, Twitter, Instagram and LinkedIn.
SOURCE Autism Speaks
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.