SOMETIMES I DON’T KNOW WHAT TO THINK

What does “cure” really mean?

Autism Dad and I recently attended a local event in support of an Autism-focused organization in our community. It was a very pleasant event and I was glad that it appeared to be going well for the organization. Then the director of the organization got up to speak and stopped me dead in my tracks.

The director talked about the goals of the organization, the positives they were trying to achieve, and mentioned the successes of her own children on the Autism spectrum.

Children who were now “cured.”

I am online every day, reading hundreds of items on Autism a week — I didn’t remember reading anything about a cure for Autism. I am fairly confident I have not missed any vital, well-founded information related to Autism. To my knowledge there is no cure for Autism. So what was the director talking about?

I thought maybe I was being too literal and that she meant that her children had developed tools and strategies that enabled them to participate in society as they wanted to, a kind of “control” over the way their Autism manifested.

But I was uncomfortable with calling it a “cure.” I couldn’t help but think about my son, and felt like it could take away from the achievements and strength of her children. And if, under times of stress in their lives, it became more difficult to control the way their Autism manifested, would that mean they had “relapsed,” like with a disease, and were no longer cured?

“Cure” is a hot-button issue in the Autism community, very much like the tension over a cure in the movie X-Men: The Last Stand. Surely the director of an Autism-focused organization would be aware of that issue.

And I ask myself: are disorders cured like diseases are cured? As I understand it, Autism — that is, Autism Spectrum Disorder — is a neurological disorder stemming from the way the brain developed, discerned by behavioral cues. Its causes are suspected to be genetic, environmental, and some combination of both. A disorder is not a disease.

Or is it?

Shortly after we attended the event, my parents came to visit. I was reminded that my mother’s REM Sleep Behavior Disorder increased her chance of developing Parkinson’s disease. Parkinson’s disease is a neurological disorder. Its causes are suspected to be genetic, environmental, and some combination of both.

If, after hypothetically developing the debilitating symptoms of Parkinson’s, my mom’s condition was somehow reversed — even if didn’t occur through a well-known medical treatment — would I hesitate calling that a cure?

I found a blog post discussing the difference between the meanings of “disease” and “disorder.” It was published six years ago, and looking at the comments I was not the only one perplexed by the question and the answer. There were comments from six years ago and there are people still commenting on it.

Fuzziness in terminology is not helpful to people looking to learned professionals for answers.

As I found myself on a syllogistic, philosophical, and interpretive carousel, I read this in that same blog post:

You say disorder, I say disease. Tomato, tomahto. Whatever you call it, at least one thing’s for sure — they both share the same goal, which is to prevent it, manage it, treat it and/or find a cure.

In other words, in a world of clouded terminology, if my mother was diagnosed with Parkinson’s disease, both my son and my mother would have neurological conditions that one way or another would affect their lives.

Calling something that stops or reduces negative effects as they define them a cure or treatment or management may be irrelevant.

Perhaps “cure” is in the eye of the beholder.

Originally published on Autism Mom August 2015 with some excellent comments from readers — you are invited to take a look at those as well.