This is a blog post by Harriet B. Austin, Ph.D., Senior Instructor and LEND Family Discipline Director, UC-Denver JFK Partners; Children's Hospital. Dr. Austin authored that latest ATN/AIR-P tool kit, A Clinician's Guide to Providing Effective Feedback to Families Affected by Autism, along with Terry Katz, Ph.D. and John Paul M. Reyes, M.A.
I have often wondered how different professions learn their skills. Sometimes the answer is obvious. We all know doctors attend medical school to learn the inner workings of the human body, but what about the more subtle skills of bedside manner or how to deliver bad news? This exact question came up in a LEND (Leadership Education in Neurodevelopmental Disabilities) class I was teaching several years ago at the University of Colorado at Denver. The curriculum we were developing was designed to give the LEND fellows a deeper understanding of the experiences of families raising a child with developmental disabilities, like autism. We had covered early intervention, school, siblings and a variety of other topics. Thinking back about what my own family had gone through with our son who has autism, I realized we had not yet covered that initial step that starts families down this path in the first place – going through an assessment and getting the diagnosis. Yet it’s the most important step in so many ways. How we are given this news is central to how we accept the diagnosis and move on to the many things that follow, including starting intervention. It can be done with great kindness and support, or it can be done poorly. How do we teach this skill?
From this class came the idea to create a manual and video about how to give effective feedback to families, from setting up the assessment visit, to giving the diagnosis and recommendations. Licensed psychologist Terry Katz, PhD, and doctoral student John Paul M. Reyes, who is now completing a postdoctoral fellowship at Weill Cornell Medical College/New York Presbyterian Hospital, were instrumental in contributing their professional expertise to the project. The result is a set of materials we hope will provide useful instruction to trainees about the skill of giving feedback. We anticipate that those most likely to use the materials are psychologists and other health professionals who assess and work with children on the autism spectrum, but most health professionals have some aspect of their job that entails assessment and diagnosis.
The information is meant to be used broadly with the ultimate goal of making this step on the journey as positive as it can be for families.