Recent research has indicated that approximately 2 percent of all U.S. school-aged children (1 in 50) have been diagnosed with an autism spectrum disorder. Two percent doesn’t sound like very many, but it means that within a typical elementary school, six to 10 children are likely to have autism. With numbers this high, and continually increasing, it means that at some point in your life, you or someone close to you may have a child with autism.
So what is autism? Autism is a neurodevelopmental disorder that is associated with difficulties in social interaction, delayed or impaired verbal and nonverbal communication and restricted, repetitive and stereotyped patterns of behaviors, interests and activities. Symptoms of autism can vary in severity and can range from those that are very mild and almost unnoticeable by others, to those that are much more severe and that can have a significant impact on a child and his family.
Although every child with autism is unique, there are some commonalities that many children with autism share—and that they wish you knew about.
I experience the world differently than most. Children with autism may interpret the world differently that many other people do. Specifically, some children with autism may experience sensory input as stronger or weaker than would a “typical” person. Anecdotal reports have indicated that for children with autism, noises may seem louder, lights may seem brighter and clothing may feel rougher, and that some of these sensory experiences can be painful or very distracting. Others have reported that they may require intense sensory experiences before they register the input. The ways that children with autism experience their world will impact their behavior and influence the ways in which they learn and participate in their communities.
I may not understand you. One of the key diagnostic criteria for autism is delayed or impaired communication skills. As a result, children with autism may have difficulty understanding when others are talking with them. Like all children, youngsters with autism may disobey their caregivers or they may zone out of boring conversations. But for children with autism, there is also a strong possibility that they simply do not understand what is being said to them. Children with lower language abilities may have difficulty with basic language (e.g., instructions like “Go to your room and pick up your toys”), while those with higher abilities may have difficulties with more subtle language such as sarcasm or metaphors.
My problem behavior has a function. All behavior occurs for a reason. All of us, children with autism included, engage in behavior because it allows us to access differing types of reinforcement. For instance, many people go to work (the behavior) to access money or the goods that money can buy (reinforcement), or they speed in their cars (the behavior) to get to work faster (the reinforcement). For children with autism, who may have limited verbal repertoires, problem behavior can serve to let others know that they need or want something (or that they need or want something to stop). For example, if a child with autism is uncomfortable at the grocery store due to the number of people or the overhead speakers, he may begin to cry or scream (the behavior) to escape the store (the reinforcement). Whenever a child with autism engages in problem behavior, he is trying to tell us something. While it is important to help children with autism learn the types of behavior that are or are not allowed in certain settings, it is equally—if not more—important to understand what need they are trying to tell us about and help them learn a positive way to communicate that need.
My family has a lot going on. All families are busy, but for families of kids with autism, busy can take on a whole new meaning. Often families of children with autism need to work hard to advocate for their children to ensure they are getting the services they need. Caregivers may have to provide extra assistance (sometimes lots of extra assistance) to help children with autism do routine self-care and household tasks. Caregivers may have difficulties running errands like getting groceries or attending appointments if their children have difficulties in crowds or unfamiliar places. In addition, having a child with autism may cause financial strain for families as they struggle to pay for needed therapies or adaptive equipment, or if they need to miss work to attend to the needs of their children. All of these issues can mount on typical family responsibilities and can result in families with high levels of stress or fatigue. Despite the challenges, the family of a child with autism is his biggest resource, strongest advocate and greatest support.
Autism is only a part of who I am. Children with autism may engage in behaviors that cause them to stand out from their peers. They may make loud or unusual noises. They may flap their hands or jump in place, or they may have difficulty understanding metaphorical or sarcastic language. But regardless of what “autistic” features they may present, these features are only small parts of who these children are. Just like neurotypical children, those with autism have favorite colors, favorite foods and favorite activities. They can be affectionate and funny, and they have dreams for their futures. Autism is only one trait in many a complex and unique personality.
Dr. Annette Griffith, BCBA-D, lives in the Kansas City area. She is the director of Momentum Behavioral Health and the mother of two young children.
Dr. Annette Griffith, BCBA-D