Ssshhh. I will let you in on a secret. On Sunday the Daily Local News will present a special section examining the topic of autism. It’s something we’ve been working on for a couple of months.
There’s no breaking news, no “aha” moments, no earth-shattering reports of breakthroughs from the medical community. What it will be is a human look at a very puzzling condition that affects more people than you may realize.
What you also may not realize is that lots of people who are on the autism spectrum live their lives in more normal ways than you can imagine. And they have interesting stories to tell – as do their families. So we will present you some stories and people we found interesting and they will tell you all about their lives and how they cope with autism.
So that’s the end of the shameless promotion for our work.
What I am writing about right this moment is actually a very interesting story I read today on Philly.com. Yes that Philly.com. We may be competitors but there’s room for good work at our paper and theirs. And I like to call attention to stories that are interesting no matter where they “reside.”
Reporter Stacey Burling wrote today about a young man from Pottsville – Paul Corby – who has autism and a bad heart. (Here is a link to the article: http://bit.ly/MuI0cl) As if that’s not enough, doctors at Penn say his autism symptoms are severe enough as to make him a bad candidate for a heart transplant.
From Burling’s story: “Doctors at the Hospital of the University of Pennsylvania have said they are, according to Paul’s mother, Karen. She disagrees and is using an online petition and the support of a network of autism advocates to make her case. Karen Corby says she was ‘stunned’ by Penn’s decision, then inspired by another family’s successful fight with Children’s Hospital of Philadelphia over a similar decision.
“’I guess they thought we would accept it and just wait for the inevitable,’ said Corby, of Pottsville. She said she has not been told how long her son, who has a heart condition called left ventricular noncompaction, might live without a transplant.”
Now I would never try and play physician – doctors know way more than I do about their craft and what’s better for a patient.
Again, from Burling’s story: “Karen Corby released a letter she received from Penn cardiologist Susan Brozena in June 2011. In it, Brozena said that she recommended against Paul Corby’s getting a transplant ‘given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.’”
I can only imagine how difficult it would be for doctors, nurses and all the support staff and others to deal with Corby after such a major procedure. I’m sure it would take a lot of patience, support and probably very unusual and unique techniques to deal with potential behavior or related issues.
But are we saying that because the person is autistic he doesn’t deserve a chance to prolong his life? That because he has certain behavior issues that would require unusual and extra effort that it’s not worth it? I wonder if the doctors would make the same decision if it was their child?
Obviously if a person is in such failing health that a heart transplant wouldn’t make much sense, I could maybe agree with the decision. If someone is elderly, has serious health issues other than their heart, I could maybe agree. But it just seems that because it might take extreme efforts to deal with emotional and mental issues that the medical community doesn’t want to be bothered with Paul Corby. And to me, that’s wrong.
In our work for our special project on autism I met people who both have autism or have children who have autism. They all know being autistic means your life is way different than most of us. But that doesn’t mean your life is worth less than anyone else. In fact, those I met and spoke to bring a unique outlook to life.
Even Corby has self-published a pre-teen book. And while it may not be on the New York Times best seller list, it is proof that he has something to offer. It’s quite an accomplishment. In her article, Burling points out that Corby is aware of his issues. But he also has feelings.
When he was told about the decision not to give him a new heart, Burling wrote: “At first he was OK with it because he thought, ‘At least I don’t have to go through that surgery,’ ” his mother said, “and then he thought, ‘Why not? Why don’t they like me?’ “
That must be a horrible feeling to think your life will be cut short because you’re autistic and that someone doesn’t “like” you. I hope the doctors have the courage to tell Paul Corby to his face that his autism eliminates him from getting a new heart. I know I couldn’t do it.
– Andy Hachadorian