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| Support and Advocacy for People With Profound Autism |
| Saturday, January 18, 2025 |
| 2:30 PM–3:20 PM |
| Sheraton New Orleans, Level 3, Napoleon Ballroom BC |
| Area: AUT; Domain: Service Delivery |
| Chair: Terry S. Falcomata (The University of Texas at Austin) |
| CE Instructor: Terry S. Falcomata, Ph.D. |
| Presenting Author: JUDITH URSITTI (Profound Autism Alliance) |
| Abstract: Profound autism is a newly established administrative term that describes a subset of the autism spectrum that is frequently misunderstood, misrepresented, and excluded. Understanding what this administrative term means and how it can be utilized to design and implement individualized, evidence-based services for the population it represents is vital. Additionally, advocating for meaningful supports and services for people with profound autism requires knowledge of and a unique strategic perspective. |
| Instruction Level: Basic |
| Target Audience: Autism service providers, caregivers, community-members |
| Learning Objectives: At the conclusion of the presentation, participants will be able to: (1) Describe what the administrative term, profound autism, means; (2) Describe how clinical practice guidelines for applied behavior analysis addresses ways to serve this population; (3) Describe what the current prevalence rate is of people with profound autism in the US; (4) Describe two effective advocacy approaches to ensure this population is represented and supported on both the federal and state levels. |
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| JUDITH URSITTI (Profound Autism Alliance) |
 Judith Ursitti is cofounder and president of Profound Autism Alliance. A CPA by training, she spent a decade working in tax accounting. She became immersed in autism advocacy in 2005 when her son, Jack, was diagnosed at age 2. Since his diagnosis, she has worked on the passage, implementation, and enforcement of autism insurance reform as part of the team that passed legislation in all 50 states. She has advocated federally for the original 2006 passage and subsequent reauthorizations of the Autism CARES Act and appropriate enforcement of the Mental Health Parity and Addiction Equity Act. Judith worked for Autism Speaks as their director of state government affairs for over a decade and served on the Massachusetts Autism Commission, where she co-chaired the Commission’s 14-22/Employment Subcommittee. Most recently, she served as vice president of government affairs at the Council of Autism Service Providers. She is the recipient of the Margaret Bauman, MD Award for Excellence within the Autism Community, the Advocates for Autism of Massachusetts Commitment to Advocacy Award, the Autism Advocacy in Action Award from the Long Island Behavior Analysis Conference, the Oklahoma Autism Network’s Excellence in Autism Award, UMass Medical School’s Autism Insurance Resource Champion Award, and the Autism Science Foundation’s Caryn Schwartzman Spirit Award. She has also run ten marathons, including seven Bostons, fundraising for various autism-related charities. Judith grew up in Texas and remains a Texan at heart, but lives outside Boston with her husband, Andy, and son, Jack. |
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