No right answer

“Good and ill have not changed since yesteryear,” says Aragorn in Lord of the Rings, but to me the goalposts must have shifted somewhere along the way. In my lifetime, mainstream opinions about euthanasia, and abortion (to name two important examples) have changed drastically.

The article linked above describes the extreme measures that parents of a Ashley, a girl with serious brain damage, have taken to change their daughter’s life. They have had her sterilised, so that she can’t become pregnant if raped; removed her breast buds, so that she won’t have the added discomfort of breasts; and given her growth hormones so that she will remain smaller and thus easier to transfer and care for.

They argue on their blog that they have done this to make her more comfortable and not for their own benefit; certainly they seem to be trying to provide her with the best environment possible. And of course, within reason, making things easier for oneself as a parent does make things better for the child.

In the Time article, the doctors looking after Ashley discuss their approach to this unusual case as doctors. Here’s a quote that I think goes to the heart of the matter:

“I felt we were doing the right thing for this little girl—but that didn’t keep me from feeling a bit of unease,” admits Diekema. “And that’s as it should be. Humility is important in a case like this.”

There’s no rule book for situations like this. And sometimes there just isn’t a right answer. All you can do is weigh it up and make what seems to be the best decision. I don’t know if Ashley’s doctors did the right thing or not. Even they don’t really know. In a sense, that’s what medical ethics is about.

Private universe

There’s been a fair bit in the news about autism recently.

I’ve always been fascinated by this disorder. The MMR vaccine scandal has been interesting to follow as an example of below-par science, and poor understanding by the public of the science. To me, this is just a symptom that science education and mainstream media science reporting needs some vast improvement.

But the main reason is probably that I know so many people on the spectrum. I grew up knowing a family in which all the boys had quite severe autism and have since met others with autism or Asperger syndrome. I always wondered: What sort of place could these boys have in a world where communication is vital? When you “have a different sort of internal thought” that in some cases leaves you completely dependent on your family or other carers for your entire life — what does it mean? What does it tell us about the human brain? Is it really a disorder, or just another state of being?

From that last article:

With autism diagnoses rising steadily, talk of an “epidemic” and a growing search for a cure, Roy feels threatened. “I feel stabbed when it comes to ‘curing’ or ‘treating’ autism,” he says. “It’s like society doesn’t need us.”

Many autistic people are starting to agree. They have had enough of being treated as a medical problem, arguing that autism is not a disease that needs to be cured but just a normal part of human diversity. This emerging “autistic rights” movement hopes to launch an international campaign akin to Gay Pride, encouraging autistic people everywhere to embrace their “neurodiversity”, and persuading wider society to accept them as they are…

Carina Schmidt’s son has autistic disorder and requires round-the-clock attention. His condition is so severe that he required a 10-month stay at the Kennedy Krieger Institute to break some of his self-harming habits. She is adamant about doing everything possible to help her son, who now lives in a group home in Rockville, Maryland. She also supports the development of prenatal tests for autism. “If my son could be cured today I would say ‘yes’,” she says. “My family has suffered like there is no tomorrow – that’s why we choose to have no more kids.” … Schmidt says that she will continue seeking help for her son. And she is sure he wants her to. “I can see my son wants to be normal,” she says.

There are no easy answers here. But I think the research being done now is fascinating and exciting. Even if people with autism don’t want a cure, this research goes to the heart of what makes us human: our complex, intricate, amazing brains.