Nothing about us without us.
The autism community has made it clear that research must be participatory and co-designed by them. Sir Simon Baron-Cohen examines how this stance has changed the course and focus of autism research. In addition, he examines the current tension between neurodiversity and disability and how to better protect the human rights of autistic people. He encourages the scientific community to embrace these challenges as opportunities to explore and expand what we can know.
Becca Lory Hector joins the conversation to provide perspective from an autistic adult. She addresses the “nothing about us without us” axiom from a personal point of view and with an eye to how research should focus on bettering the lives of those on the spectrum. The discussion also looks at the rate of suicide and depression affecting the community and how mental health should be supported.
Michelle McGowan shares the perspective of parents with autistic children and asks important questions about how science can support children as they grow into adulthood. She also explores how parents, educators, and education systems can better understand and communicate with non-neurotypical children.
This important conversation was the keynote presentation at the Autism Tree Project Foundation Annual Neuroscience Conference.
Watch Autism Research & Neurodiversity: The Changing Culture with Sir Simon Baron-Cohen.
Inside a lab at the Sanford Consortium for Regenerative Medicine, researchers are doing something truly remarkable. They are growing tiny versions of developing human brains in order to study everything from Alzheimer’s disease to the Zika virus. Alysson Muotri is the co-director of the UC San Diego Stem Cell Program and leads the team researching brain organoids. He recently sat down with Dr. David Granet on Health Matters to discuss the endless possibilities of his research.
Muotri’s organoids are often referred to as “mini-brains,” but they are far from what that name might suggest. The organoids are grown from stem cells, which are harvested from living tissue, such as skin cells. Researchers give those stem cells instructions to become neural cells. Eventually they form tiny clusters of neural cells, about the size of a pea. Those clusters have been shown to exhibit some of the same characteristics of developing human brains, including firing electrical signals in specific patterns. But, the organoids do not contain every type of brain tissue, and have no vascularization.
Despite the differences with the human brain, organoids have proven useful in understanding and treating disease. One of the major successes of Muotri’s research was finding and testing an existing drug to treat mothers infected with Zika virus. The drug can prevent the disease from being passed to the baby and causing microcephaly. Muotri is hoping his lab will continue to have success using the organoids as an effective brain model to find more cures, and provide a deeper understanding of brain development and disease. And, his work isn’t limited to Earth. Muotri recently launched his organoids into space for a groundbreaking study.
Watch — Using Stem Cells to Research the Brain – Health Matters
Check out highlights from this year’s conference addressing a variety of topics, including the impact of trauma and immigration on child development and people with intellectual and developmental disabilities.
Offering a unique update for primary care and subspecialty health care professionals and others who care for children, youth, and adults with developmental disabilities and complex health care needs, the conference covered a broad spectrum of developmental disabilities across the lifespan including autism spectrum disorders, mental health, genetic screening and diagnoses, and intervention and therapeutic consideration. Focus on special education, law enforcement, and policy from a variety of specialists adds to the content.
Presentations by expert faculty should be of interest to pediatricians, family physicians, nurse clinicians, psychologists, and internists who are involved in the healthcare of individuals with developmental disabilities, as well as to those in other health-related disciplines including health policy, epidemiology, psychiatry, school health, social work, and case management services.
While the conference is designed for health care professionals, families and individuals with developmental disabilities will also learn from the various represented disciplines. The conference was held at UCSF on March 14 and 15, 2019.
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