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?
Raising a Child with Asperger's Syndrome 
Rachel,
I couldn’t agree with you more. We need to stop categorizing people and rather accept for who they are. Your idea of neuro-diversity is important to our continued existence as a species. We need to stop creating the “other” through labels and enjoy the diversity of those around us.
It wouldn’t allow me to post in the comment section. It has something to do with gravatar?
James Davis, President
The Davis Group Ltd.
http://www.davisgroupltd.net
818-640-1315
Thank you James! I don’t know what it looked like for you when you were posting but it posted as a comment. I appreciate your input.
Rachel,
We have a great deal of neurodiversity in our family, including many diagnoses that overlap: schizophrenia, autism, bipolar, depression, Tourette’s, OCD and anxiety. The key to understanding these various states of being is neurology and neurochemistry. I feel that much diversity stems from combinations of information processing and regulation.
My mom’s side of the family tends to be a touch paranoid–benign actions are misinterpreted as being threatening. My dad’s side of the family is quite blithe. Despite being raised to be distrustful of people, I am as blithe as my father! It’s a tiny example, but I see patterns in behaviors that go beyond environment, into deeper organic issues.
Accepting mental diversity is the next big step in human rights. Viewing an inherent part of a person as a “sickness” devalues their existence. This does not mean that we should toss out the meds, stop research, or discard useful therapies and education. We should focus on methods to improve quality of life, including removing stigma. It is a cycle that can rotate upward–less stigma plus helpful interventions equals happier individuals who can self-advocate and demolish more stigma.
I agree. You are much more articulate than I have been on this subject. It has only been in the last few years that I have begun to look at the idea of neurodiversity vs. mental illness. The longer I look at it, the more I see neurodiversity. My struggle has been with the extremes I see. For example, mental illness seems to indicate something wrong that must be fixed – an illness. On the other hand, some in the neurodiversity world tend to insist that people with these diagnoses are never in need of support and should just be accepted. I like your view, “Viewing an inherent part of a person as a “sickness” devalues their existence. This does not mean that we should toss out the meds, stop research, or discard useful therapies and education. We should focus on methods to improve quality of life, including removing stigma.” Thank you for you contribution.