It's official: The astronomically high numbers on autism released in 2012 by the Centers for Disease Control -- that 1 in 88 children will be diagnosed with the disorder -- have jumped even higher. The CDC came out with new figures in March showing that it's now 1 in 50 children. Some have disputed these new statistics, but I wouldn't know how to. I'm the mother of a 16-year-old with autism, not an epidemiologist. And I can certainly say, based on my own experiences seeing children of old friends and colleagues being diagnosed every year, the numbers seem to be on the rise.
Last year, just after World Autism Awareness Day when I published my novel, If I Could Tell You, about four families coping with autism, I began hearing from parents of autistic children from all over the U.S., as well as the world: Japan, India, Norway, Israel, France, Italy, Britain and Argentina.
One subject that comes up often when we chat are the many misconceptions people still have about autism. So, I'm going to list the myths that bother me the most. While no one believes all of these, many people still believe some of them.
1. People with autism are all "Rain Man" geniuses. In truth, only between 5-10 percent have what are called "savant abilities," such as the ability to tell if a large number is prime, to play a piece of music by ear or to make a detailed drawing of a building they've only seen once. It's fascinating when people have such skills, and that's most likely why savants receive so much publicity. But most kids are like the son of novelist Nick Hornby (High Fidelity, About a Boy), whose only remarkable talent is the ability to hear someone opening a package of potato chips from the other end of the house. That's what my son is like.
2. People with autism are all mentally disabled. That's the flip side of the Rain Man stereotype. There are still lots of people out there who think that if kids with autism can't speak, they are mentally disabled. According to Scientific American, "Researchers have long considered the majority of those affected by autism to be mentally retarded. Although the numbers cited vary, they generally fall between 70 to 80 percent of the affected population," but common sense should tell people that that is because most of them have no interest in the IQ test and often don't complete it or pay much attention to it.
3. Autism comes from bad parenting. Bruno Bettelheim popularized the theory about autism being caused by "refrigerator mothers" (which had the horrible result that, for a generation, women who had children with autism were blamed for it). About as many people believe this today as think the earth is flat, but now and then, I bump into someone who asks whether I had trouble bonding with Danny when he was a baby. Any number of new moms may have "trouble bonding," but that simply isn't what causes autism.
4. Autism is just a kind of eccentricity. Many people with autism are eccentric (and creative and original), but it is not a lifestyle choice. There are many bloggers claiming to be on the autistic spectrum who say that autism is simply a different way of looking at the world and that parents who want to teach their children skills such as speech or using the toilet are somehow oppressing them or don't love them. Part of the problem is that autism is a spectrum disorder, and those on it range from totally non-verbal people who bang their heads against the wall to people like Sheldon from "The Big Bang Theory." The critical difference, obviously, is that the Sheldons can make their own decisions about their lives. There's nothing wrong with spending most of your days dressed as a character from "Star Trek" if that's what makes you happy. But that is worlds away from being so disabled that you cannot tell anyone you are being abused. Perhaps in the future, someone will invent a term that describes the Sheldons better than "high-functioning autistic" and they won't be lumped together with non-verbal people with autism who are unlikely to ever live independently.
5. People with autism feel no empathy or affection. People with autism sometimes have trouble expressing affection, but it doesn't mean they don't feel it. I have spent a great deal of time with people (both children and adults) on the autistic spectrum and I believe that they feel the same range of emotions we all do: fear, happiness, nerves, anger, etc. It may be difficult for them to understand that everyone doesn't know the same facts that they do, but that is very different from not feeling empathy. When I'm sad, my son will look at me warily, and then say, with hope, "You're feeling much better now?" When he was first diagnosed, a distinguished psychiatrist told me that it was "rote behavior" when my son hugged me and that didn't indicate that he felt affection for me. Later, a teacher told me that my son only hugged people "because he craved sensory input." I was very upset, but then a neighbor said, "Your son is the warmest kid I've ever seen."
6. There are many treatments that cure autism. There are therapies that treat autism, but nothing that cures it. Applied Behavioral Analysis (ABA), which many tout as the treatment of choice, helps some and does not do a great deal for others. My son and other children I have known have actually deteriorated on ABA programs. The same is true for Floortime. Similarly, drug therapies help alleviate certain symptoms of autism in certain kids but don't help others.
7. Scientists understand what causes autism. Yes, and every day a new study comes out showing that something else causes it.
Let's move on and put these myths to rest so we'll have more to celebrate next year on Autism Awareness Day.