What Is Autism?
What everyone should know about this developmental disorder
April 2 is World Autism Day. We talked to Carin Yavorcik, a spokesperson for the Autism Society of America, who has also experienced autism in her own family to better understand what autism is.
What is the definition of autism?
It’s a complex neurodevelopmental disability that typically appears in the first two years of life, affecting the person’s ability to communicate and interact with others. Within the spectrum of the condition, a particular autistic person might not understand what others are saying. He or she might appear to be deaf or engage in repetitive behaviors like hand-flapping. He might act upset for no apparent reason or appear insensitive to pain. Our web site has a list of symptoms.
How many conditions exist under the umbrella of autism?
The two that people are most familiar with are autism and Asperger’s. There are five altogether: Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS), Rett Syndrome, and childhood disintegrative disorder. Our web site gives the diagnosis criteria for all five.
I know autism is on the rise. What’s the prevalence today?
Right now, the statistic is 1 in 150 births. There are no easy answers for why autism is increasing. Autism spectrum disorders (ASD) are most likely genetically based neurological disorders. Scientists are also looking at environmental factors like environmental toxins that are more prevalent than in the past. We do know that better diagnosis alone doesn’t account for the dramatic increase.
Awareness has grown, but are there myths about autism?
One of the biggest myths is really hurtful: that children with autism cannot love or show affection. That’s not true. Sensory stimulation is processed differently, so maybe someone who’s autistic doesn’t want to be hugged. That doesn’t mean the love isn’t there. My younger brother has autism, and whenever I see him, he shouts my name. It may require patience because the parents must accept and give love within the child’s terms.
How early can you assess your child?
The American Academy of Pediatrics recommends two screenings before the child turns two. They issued guidelines in November of 2007. Also, the web site of the Centers for Disease Control and Prevention has a great program called “Learn the Signs. Act Early.”
Is early intervention key?
The earlier, the better. We recommend seeking services as soon as you suspect the diagnosis. Treatment costs could be reduced by two-thirds with early intervention.
What are the treatments?
There’s a wide variety. Because autism is a spectrum disorder, each person with autism is unique. Not all treatments work for all people. Each family should select what’s most appropriate for their situation. There are educational treatments like applied behavioral analysis (ABA), there are biological treatments, like special diets (gluten-free, dairy-free), medications, speech language therapy, occupational and physical therapies. There are communication systems like a picture exchange system for nonverbal kids.
What happens when these kids grow up?
Some can’t function independently, but others can. We’re teaching my brother to drive so he can get to his job at a supermarket.
We all remember Rain Man. Are there good stories about autism?
The Horse Boy, which comes out this month, is a very interesting book about people being creative in terms of treatment and learning what they can dare to dream for their child. The Curious Incident of the Dog in the Nighttime is a good novel about autism.
Any other myths you’d like to bust?
Not all people with autism are savants like Dustin Hoffman’s character in Rain Man, but they can all make contributions.
Are most people aware of their autism?
It depends on their functioning level. My brother knows he has autism. Some people who were undiagnosed in childhood are just finding out in their forties, say, that they have Asperger’s, and they finally understand why they’ve felt different.
What are the other hurdles for a family facing autism?
Financial resources are in short supply. In many cases treatment is not covered by insurance. We’re trying to get autism treatments like ABA, an intensive one-on-one therapy that can cost $30,000 a year, covered by insurance.
Where is research headed?
We’re focusing on treatment-guided research. We want to know why a certain treatment works for a certain person.
How can parents avoid neglecting a sibling who is not affected?
My younger brother got a lot more attention. But my parents made a point to do activities that were special to me like taking me shopping. It’s nice to have attention focused on you. My brother and I have less sibling rivalry than a lot of my friends do.
What should everybody know about autism?
We need more acceptance. People say, “How can you let your child scream?” The lights in the supermarket are painful to the child, because he has autism, and that’s why he’s acting this way. If you have a loved one who’s affected, offer to baby-sit if you can.