During Autism Awareness Month, the public has an opportunity to learn more about this developmental disorder and how it impacts lives, specifically here in Indiana. Since 2004, the HANDS in Autism® Interdisciplinary Training and Resource Center has provided innovative practical training impacting thousands of lives across the state. The Center, functioning within the Department of Psychiatry at Indiana University School of Medicine, has grown substantially from its early years with only a couple of members. Now, nearly 15 years after its launch, the Center serves all 92 counties in Indiana, as well as receives requests for training across the country and internationally.
During graduate school, Naomi Swiezy, PhD, a clinical psychologist, focused on autism and developmental disabilities, specifically on parent training. However, in practice, it became readily apparent the disconnect with regards to understanding of autism as well as the effective implementation of research-based practices across providers and settings. Her response? Starting HANDS in Autism®.
What is HANDS in Autism? The Center started as an effort to provide expanded community education, outreach and training. The parent training model that I applied in practice was redefined and transferred into more of a staff/ caregiver model. The wait for specialists is not timely or effective—communities must be ready to support the interventions needed without awaiting specialists given the dearth of such across the state. As such, HANDS in Autism® aims to build local capacity such that people can go to their local school personnel, medical providers, to get solid information and support with basic strategies. If more intensive or specialized services are needed, then specialists may be consulted but this model will not suffice especially when wait-times can be so grueling.
Give an example of some of your training. At HANDS, we follow a standardized framework, curriculum and process. We have incorporated what we know from science and practice to best support the development of individuals with ASD into a training curriculum and process that emphasizes the use of effective behavioral and educational practices. For example, we know that individuals with ASD benefit from the use of visual supports that provide cues as to the general expectations such as sequence, duration and behaviors expected. As such, HANDS training incorporates a number of practical and proactive methods into the training curriculum in that they are essential to reducing anxiety and behaviors that would result if caregivers and providers do not provide these basic supports.
However, we also aim to tailor content that is research-based so that it is digestible, usable, and consistently utilized across those in various roles and settings, lending to more effective bridging across service systems (e.g., school, home, medical). HANDS trainings are purposefully small so we can provide a sufficient amount of modeling, practice and feedback for participants to effectively learn and integrate practices, increasing the chance of later use. Much of our work involves traveling across the state to learn about and directly coach and mentor specific to the needs of individuals, school personnel, families, providers and employers within their natural setting. Through this model, we assess the specific needs and customize the training length, content and format to one that is geared specifically to their roles and needs.
How did you get enveloped in Autism? I have been involved in the field of autism and developmental disabilities since graduate school. However, my focus has moved away from providing a direct service with individuals and families to a focus on supporting and training those in the field providing services to more effectively do so within their context. I found it very disheartening that individuals and families were sometimes waiting up to two years to see specialists providing services like mine in clinics; that is was not efficient or effective and tends to perpetuate the use of crisis management approaches. Rather, the community must share in the responsibility for increasing the shared knowledge and using of proactive and skills teaching approaches, decreasing the use of more invasive and crisis management strategies, and improving the inclusiveness of individuals and families in the community through shared learning and responsibility for these successes by ensuring that we work together to similarly understand and provide proactive support for individuals and families in and often leant to crisis management approaches.
Why does autism awareness and education matter? We just need to look at the statistics. As of 2018, the CDC has reported that one in 59 individuals are diagnosed with autism spectrum disorder (ASD). Most people will know or interact with individuals and families with ASD. As such all should feel well-tooled with practical and applicable strategies to utilize wherever they interface with individuals with ASD Autism isn’t isolated to any one community group, why should its education be?
What is the goal for HANDS? Our goals continue to evolve as the field and the needs do. The original goal was to develop an effective training model to support caregivers and providers across systems in developing the knowledge and skills needed for effective implementation of strategies that would support all individuals in reaching successful life outcomes. We seek to continue to grow the research that we are doing in evaluating our model and its community impact. This will assist in our dissemination efforts and the potential for others who may desire to have training in our methodology.
What gives you the biggest rush?
Seeing the impact on each person involved, whether that is the individual with a disability, their family caregiver, or the provider themselves, when the program or community is working together with consistent perspective and information. With the use of research-based methods, a focus on proactive supports and teaching skills, individuals and families with ASD can achieve quality of life outcomes previously thought not achievable. People genuinely want to see all succeed but often don’t know how to go about it. With HANDS, we look to train and have an impact on the state one individual, one family, and one community, at a time.
Naomi Swiezy, PhD, HSPP, is a professor of clinical psychology in clinical psychiatry at the IU School of Medicine. As founder of the HANDS in Autism® Model and director of the HANDS in Autism® Center, her programming and research interests include the facilitation and implementation of systems change with direct involvement in development of programming, training and supervision of personnel and students in implementing programming elements, and facilitating engagement, participation and training of community partners. Swiezy is supported with the expertise of Tiffany Neal, PhD, who has worked in a range of professional service settings amidst learners across ages, areas of diversity and developmental levels. She has collaborated and trained a range of professionals serving in varied fields and capacities, and has engaged in various facets of research. Neal has a rich background in clinical neuropsychology and complex or dual diagnoses with experience in inpatient, outpatient, diagnostic, home, school and community-based service and treatment settings.
The views expressed in this content represent the perspective and opinions of the author and may or may not represent the position of Indiana University School of Medicine.
Having joined IU School of Medicine in 2016, Em uses a poetry and theatre background to help bridge the academic world with the creative. A graduate of University of Evansville, he works with faculty and academic staff to formulate unique, marketing idea...