Autism: A 'death sentence' at times?

Heart of the Milky Way (ESO/J. Girard)

Autism is not usually viewed as a terminal disease.  However, it might just turn out to be a "death sentence" for Paul Corby – a

23-year-old Pennsylvanian who needs a heart transplant in order to survive.

According to the New York Daily News, Corby is being denied this transplant because he is also autistic.  Although "able-bodied and high-functioning," he was turned down by the hospital group

Penn Medicine due to "his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effects of steroids on behavior."

Since there are more patients on the transplant list than there are hearts to give them, hard (sometimes short for "hard-hearted") decisions ensue.  There are physicians who assume that autism entails an inability to follow directions.  These same physicians might therefore assume that autistic patients would not be good candidates for managing the ongoing challenges of post-transplant life.

However, what is commonly referred to as "autism" is actually a subcategory of "Autistic Spectrum Disorders" (aka "Pervasive Developmental Disorders").  The key word "Spectrum" and the plural word "Disorders" denote a wide variety of symptoms and behaviors within this overall diagnosis. 

Subcategories on the milder end of the Autistic Spectrum, such as High Functioning Autism and Asperger's Syndrome, have been subject to a great deal of debate.  A scientific understanding of such diagnoses seems to be very much a work in progress.   Dr. Tony Atwood explains that these milder Spectrum Disorders have been far less researched than the extremely severe "silent and aloof" ones.  There is some disagreement among clinicians as to whether Asperger's is a "unique disorder" or "simply a form of autism with a higher

intelligence quotient."

When even autism experts can't conclusively describe the various manifestations of autism, what is to be said about hospital groups that make life-and-death decisions based upon far less of an understanding?  Can it be that Paul Corby is virtually being "sentenced to death" without so much as a trial? 

Corby's mother seems to think so.  She has taken this "case" to the "court of public opinion" by launching a Change.org petition "calling for the hospital to change its mind about the transplant."  Although Penn Medicine "won't comment on Paul's specific case," it has stated that "we always encourage patients to seek

another opinion."

Perhaps a revised "other opinion" could (and/or should) come from Penn Medicine itself…

Resources

http://www.nydailynews.com/life-style/health/23-year-old-pennsylvania-man-autism-denied-heart-transplant-hospital-article-1.1137708

http://www.aspergers.com/aspclin.html

http://www.sacramentoasis.com/docs/8-22-03/as_&_hfa.pdf

Copyright August 19, 2012 by Linda Van Slyke   All Rights Reserved