This is a post by Susan Connors, MD, mother of a young adult with autism, instructor at Harvard Medical School and physician at the Lurie Center for Autism at Massachusetts General Hospital. Dr. Connors created the new tools from the ATN/AIR-P on Preparing for Successful Vision Exams.
As the mother of a 22-year-old son with autism and a physician at the MGH Lurie Center for Autism in Lexington, Massachusetts, I have seen for many years the difficulties our children, adolescents and adults have with new experiences and environments. This can be especially true for medical appointments. In our family, one of the more difficult visits was to the optometrist because, at least for my son, visits were not required more than once per year so it was not really possible to become familiar with the office and the people involved. In addition, my son did not understand much of what was asked of him during the exam. Some of the methods used were entirely sensory-unfriendly for him and caused anxiety, frustration and “melt-downs”. Many of the older patients we see at the Lurie Center have never been able to have a complete eye exam for these reasons. And yet, understanding the world around us through vision is important for mobility and learning.
Forty percent of children with autism have vision abnormalities that can cause long term problems into adulthood if untreated. Many of these children do not get the follow-up they need because of communication and behavioral challenges. These facts led me to develop a video tool kit showing a complete healthy eye exam for parents, individuals with autism and eye care providers. Our disability-friendly optometrist (Dr. Merabet) has added information for general eye care professionals as well, because it is important to bring the knowledge about examining vision in patients with autism to optometrists who serve the communities in which our children live.
As parents, we know that early diagnosis leads to early treatment and better outcomes. At the Lurie Center, we also understand that early identification of medical problems (such as vision abnormalities) can influence cognitive and social learning and are an important part of autism treatment.
Our team, including “star” Matthew Moran, medical assistant Sara Kleinfelder, parent consultant Susan Sutherland, videographer Ryan Cook and optometrist Dr. Lotfi Merabet, as well as several volunteers, hopes that the video Vision Exams for Individuals with Autism and accompanying social narrative will help facilitate a smooth, anxiety-free eye exam and will be informative for patients, their families and providers.