National Council on Severe Autism

Thank you, Craig Escude, MD, FAAFP, FAADM, for today's great webinar. Replay now available if anyone missed it. https://lnkd.in/gxWjFXb8 #behavioralhealth #IDD #profoundautism #severeautism #biopsychosocial

Make this your #MustRead today. "Setbacks have included the decrease in research involving children on the autism spectrum who have co-occurring profound intellectual disability, minimal or no spoken language, and who require constant assistance with daily living activities. This trend is alarming because it contributes to the marginalization and unmet needs of children who need intervention the most." Vivanti, G. Autism Early Intervention – Progress, Steps Backward, and the Reconciliation of Conflicting Narratives. Curr Psychiatry Rep (2024).. https://lnkd.in/gNGPcRiq #autism #profoundautism #inequities #marginalized #unmetneeds

Tomorrow! NCSA is excited to offer you this free webinar at 1pm EST (10am PST / 11am MST / noon CST). Dr. Craig Escude, MD, FAAFP, FAADM from IntellectAbility and American Academy of Developmental Medicine and Dentistry (AADMD) will be presenting on a topic we know this community will appreciate--common behavioral presentations of medical conditions in people with IDD and autism. Behavior is a form of communication. Adverse behaviors in people with IDD/autism are often a way of communicating underlying pain or emotional discomfort and require a thorough evaluation for treatable underlying causes before starting a person on medication to reduce the actions. This presentation will use case studies to illustrate groups of behaviors that can point to specific underlying treatable medical causes that can improve the health and quality of life in people you support. Webinars are free and live Q&A is included. Register here: https://lnkd.in/g8FYHDdS #autism #IDD #challengingbehavior #behavioriscommunication

Research Opportunity Researchers at Northern Arizona University, the University of Hawaii at Manoa, the University of Utah, and the University of Nevada at Reno, are currently recruiting participants for the following study: 𝗦𝘁𝗮𝗸𝗲𝗵𝗼𝗹𝗱𝗲𝗿 𝗣𝗲𝗿𝘀𝗽𝗲𝗰𝘁𝗶𝘃𝗲𝘀 𝗼𝗻 𝗔𝗽𝗽𝗹𝗶𝗲𝗱 𝗕𝗲𝗵𝗮𝘃𝗶𝗼𝗿 𝗔𝗻𝗮𝗹𝘆𝘀𝗶𝘀 𝗦𝗲𝗿𝘃𝗶𝗰𝗲 𝗗𝗲𝗹𝗶𝘃𝗲𝗿𝘆 The purpose of this mixed methods study is to explore the perspectives and experiences of professionals certified (or previously certified) with the BACB, autistic adults, and parents and #caregivers of individuals with #Autism Spectrum Disorder (ASD) in relation to applied behavior analysis (ABA) service delivery. You are invited to participate in this study if you are over the age of 18 and a parent or caregiver of an individual with #ASD, an autistic adult, and/or a behavior analyst. Please select the survey that best represents your relationship with ABA here: linktr.ee/abaexperiences The principal investigator in this research project is Natalie Badgett, Ph.D., BCBA-D from the Department of Special Education at the University of Utah. If you have any questions regarding the survey, please contact Dr. Badgett at natalie.badgett@utah.edu. The electronic questionnaire should take approximately 30 minutes to complete. #ABA #behavior

Our latest #AuthenticAwareness video is ready. Share to help amplify family voices. Jodi Hansen, mother of a 26-year-old profoundly autistic son, shares her lived experience while making a plea for multidisciplinary care access across the United States. "The ideal change and the biggest change and something I dream big about is that every state would have a multidisciplinary clinic or hospital for our kids. Our kids are human beings. They deserve a neurologist, immunologist, rheumatologist, etc. They need to have a team of doctors. Just like we need a village to raise them, we need a system in the medical system that works." https://lnkd.in/gRjWNR_P #severeautism #profoundautism #multidisciplinarycare #healthequity #crisiscare

The workforce shortage in the field of developmental disabilities continues to contribute to the shutdown of residential facilities placing severely disabled autistic youth at higher risk of emergency room boarding and out-of-state placement. "The closures continue a long-term trend, but the quick succession of them has concerned behavioral health professionals who were already navigating a crisis-level shortage of services for kids." #autism #crisis #severeautism #developmentaldisability #intellectualdisability #ncsa #nationalcouncilonsevereautism #profoundautism #neurodiversity

Thank you Philanthropy News for recognizing the Autism Science Foundation’s critical research focus area! We are currently inviting applications for studies of profound autism. This RFA specifically calls for 1) pilot studies to identify or characterize the underlying biological mechanisms of profound autism; 2) examination of the preliminary efficacy of a behavioral or pharmacological treatment for core or co-morbid symptoms of profound autism or severe, intense, and dangerous behaviors; and 3) projects which address challenges in recruitment, retention or data collection in individuals with profound autism.

'My wife and daughter cannot be alone with our complex needs son' https://lnkd.in/eDfXJ54e Difficult read but truths being spoken. "BBC Spotlight has spoken to four dads of boys who all have a diagnosis of autism and a severe learning disability that can lead to upsetting and harmful behaviour to themselves and others. They become bodyguards and protectors and in many cases face physical harm, and have called for more support and respite.". As per the recent paper on aggression trajectories and autism: https://lnkd.in/eVpRsPQK an issue that has for too long been left in the shadows is at last seeing daylight. It's good also to see fathers having their say on this important topic. Solutions, not idle talk or neurobabble, are needed urgently.

NEW! - National Research Study Opportunity By: University of Cincinnati & The ARC Questions? email: brittany.hayes@uc.edu call or text: 502-462-7585 Signup Form: https://lnkd.in/gZvtxVTg

UPDATE! PLEASE READ. In response to feedback from our community, the researchers requested IRB (Institutional Review Board) allow expanded criteria to include more participants. 𝗧𝗵𝗲 𝟱 𝘆𝗲𝗮𝗿 𝗿𝗲𝗾𝘂𝗶𝗿𝗲𝗺𝗲𝗻𝘁 𝗶𝘀 𝗲𝘅𝗽𝗮𝗻𝗱𝗲𝗱 𝗻𝗼𝘄 𝘁𝗼 𝟭𝟬 𝘆𝗲𝗮𝗿𝘀. If you previously applied but were outside the time period, please reapply. The researchers also relayed feedback to IRB related to supported decision making / POA. Unfortunately, the response is that the current consent form does not account for someone who isn't currently a legal guardian/conservator. They have taken note of this and will be sure to address it as something that future engagement and participatory projects need to address to allow individuals to whom this applies to participate in these sorts of projects. Your voice is making a difference.