Launching the Autism Learning Health Network
May 22, 2018
The Autism Speaks Autism Treatment Network takes a big step in its mission to improve and expand the reach of comprehensive healthcare for children and teens with autism
By Donna Murray, Autism Speaks vice president of clinical services. Dr. Murray oversees the activities of the Autism Speaks Autism Treatment Network (ATN).
Today, I’m pleased to tell you about a major milestone in the work of the Autism Speaks Autism Treatment Network (ATN) in its role as the Autism Intervention Research Network on Physical Health. The ATN/AIR-P network includes 12 medical centers across the United States and Canada, – all dedicated to delivering the best comprehensive healthcare for children and teens on the autism spectrum.
Over the next two years the ATN/AIR-P is expanding to become a learning health network in partnership with the Interactive Autism Network (IAN) of the Kennedy Krieger Institute and with the guidance of the Anderson Center for Health Systems Excellence, at Cincinnati Children’s.
This transition builds on the ATN’s longstanding mission to develop care guidelines that improve health and quality of life for people with autism. Making our new partnership with IAN possible is funding from PCORnet, the National Patient-Centered Clinical Research Network. This will bring the Autism Learning Health Network into a new national PCORnet Learning Health System Community located at the Anderson Center.
What is a learning health network?
Learning health networks are multicenter collaborations of families, providers and researchers working together to drive innovation, quality, safety and value in healthcare. They do so by using the experiences of patients to guide the development of improved healthcare practices.
In other words, learning health networks drive scientific discovery as a natural outgrowth of patient care and return their findings for use in the clinic to rapidly improve people’s healthcare.
Learning health networks also share their findings as widely as possible to improve health and outcomes for more people.
Building on our success in improving autism healthcare
Our early work as the ATN/AIR-P provided the scientific evidence needed to establish that autism is frequently accompanied by a range of medical and mental health challenges. These associated health conditions include epilepsy, disordered sleep, gastrointestinal problems and anxiety disorders, to name just a few. (See “Autism and Health: A special report by Autism Speaks.”)
Together, our ATN/AIR-P clinicians developed and published some of the first screening and treatment guidelines for these autism-associated health conditions. (See “Pediatrics publishes research & guidelines on autism-related health issues.”)
We see tremendous potential to build on these successes as we grow into a learning health network.
Learning health networks are known for making effective use of technology, including electronic health records. Technology enables us to collect information with every clinic visit. This is always done in a privacy-protected manner in collaboration with participating families.
We are particularly interested in developing systems that make it easier for more patients and families to participate by contributing information that can improve healthcare.
As mentioned earlier, we’ll use what we learn from the patient experience to develop improved treatments and support services for autism-related medical conditions. We’ll then test these new approaches with clinical trials and compare their effectiveness with other promising approaches.
As part of this work, we will be rebuilding the ATN Patient Research Registry in ways that will enable us to perform quality improvement analysis and introduce improved care strategies back into the clinic in a matter of months rather than years.
The network will focus on improving health and well-being in persons with ASD. One of our first priorities, identified as a major concern by families, is reducing challenging behaviors among children and teens.
IAN brings new resources
In 2006, Autism Speaks helped launch Kennedy Krieger Institute’s Interactive Autism Network as an online forum that enabled the families in the autism community to become active participants in research and directly link with researchers across the country. IAN continues this work today with funding from the Simons Foundation.
With the PCORnet grant, IAN and ATN/AIR-P will join forces to advance the new Autism Learning Health Network with links to other national learning health networks.
Our IAN partners bring groundbreaking tools and expertise for collecting reports from parents and other caregivers on the health and well-being of children who have autism, from infancy into early adulthood, while also supporting their families. This new capacity will allow the Autism Learning Health Network to engage with families between clinic visits and monitor the child and family’s advances in the home and community. We also hope to expand participation to families who are not directly receiving care at our ATN/AIR-P centers.
We invite you to learn more about the Autism Learning Network and the Interactive Autism Network.
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.