The Profound Autism Alliance (PAA) is delighted to announce the initiation of its inaugural project, ECHO Autism: Intense Behaviour, made possible by funding from the Profound Autism Alliance, with the generous support of the Autism Science Foundation. The primary objective of ECHO Autism: Intense Behaviour is to enhance clinicians’ capacity to assess the root causes of intense behaviours and administer evidence-based treatments to mitigate them.
Intense behaviours, such as self-injury or aggression, impact a substantial 30-50% of individuals with autism. Nevertheless, there are limited experts or resources available to effectively address these challenging behaviours. Furthermore, most clinical research typically excludes individuals with profound autism, who are likely to experience intensive behaviours at an even higher frequency.
Dr. Kristin Sohl, MD, FAAP, a pediatrician at the University of Missouri Health Care and the founder of ECHO Autism, expressed, “ECHO Autism: Intense Behaviour is a groundbreaking initiative that focuses specifically on clinician development. It aims to boost their knowledge and self-confidence in delivering best-practice assessment, diagnosis, and treatment for individuals exhibiting intense behaviours. Currently, there are lengthy waiting lists for the limited number of multidisciplinary expert teams specialising in this area. Expertise in this domain is still quite scarce, exacerbating socio-economic and geographic disparities.” The project will be overseen by the ECHO Autism Communities Coordinating Center at the University of Missouri, under Dr. Sohl’s leadership.
Judith Ursitti, Co-founder & President of Profound Autism Alliance, emphasised the urgent need for compassionate and effective care for individuals with profound autism who experience painful and debilitating behaviours. She stated, “Many people with profound autism and their caregivers are living in crisis, boarding in emergency rooms and languishing on wait lists. They need compassionate and meaningful care for behaviors that can be painful and debilitating. At Profound Autism Alliance, we are determined to find solutions to remedy this and to empower physicians and their teams to help in the here and now. We are grateful to the Autism Science Foundation and to Dr. Kristin Sohl for investing their resources towards finding solutions for people with profound autism who are struggling”
