Recently, the mother of 23-year old Paul Corby received a letter from the Hospital at the University of Pennsylvania’s transplant team. Her son has a congenital heart disorder which leaves his heart unable to pump blood as efficiently as required. The family had hoped to have his name added to the wait list for a new heart. Instead the letter stated, “I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”
Yes. Paul Corby has autism. He also has an unspecified mood disorder for which he takes medication. He lives at home with his family, plays video games, has written on self-published novel and is working on a sequel. He is aware of the lengthy hospital stay and other stresses associated with a transplant and states that he is ready to participate in his post-surgery recovery. Most of the 19 medications he takes are associated with his heart disorder.
I see this as the dangerous side of defining Autism as a mental illness. Discoveries in neurology and regarding the human mind has given us the ability to more precisely describe the neurodiversity that surrounds us. These more precise descriptions allow us to link more and more behaviors to specific syndromes. While that gives us the ability to provide the individuals and families with tools and therapies, it also expands the population currently defined as “mentally ill”. Eventually we will find that nearly everyone could be defined as “mentally ill”. Using mental illness as a criteria to exclude individuals from other life-saving procedures has become untenable. We need to find an alternate way of distinguishing between a true illness and neuro-diversity.
Do you think we need to change the stigma surrounding mental illness, redefine some mental illness as neuro-diversity, or some combination of both?