1 in every 68 Children: According to the Centers for Disease Control and Prevention (CDC), that is how many children have autism spectrum disorder (ASD) in the United States. Two years ago, the CDC reported the number was 1 in 88, and last year a CDC survey of parents found that parents reported 1 in 50 children had ASD. Regardless of which of these numbers is the most accurate, we know that more children in the U.S. have ASD than have cancer and diabetes combined.
But looking at the number of children with ASD is only looking at part of the picture. Every one of these children is part of a family. Whether it is a single parent family with no other children, or a two parent family with several children, every member of the family is affected by ASD. There are the costs of diagnosis and treatment, often not all covered by insurance; the stares of strangers if the child has a meltdown in public; the too-frequent isolation that results from lack of invitations, or is self-imposed to avoid additional stress; the added worry about what will happen when the parents are no longer able to care for the child. These are realities and challenges faced by parents of children with ASD every day.
The siblings of a child with ASD are also affected, frequently dealing with their fears and concerns silently. The impact is different for each sibling, just as ASD is different for each individual. Young children may not be able to understand anything about ASD, but they know their sibling’s behavior is often confusing to them, and sometimes might even hurt them. As they get older, they can begin to understand that their brother or sister doesn’t want to hurt them, or cause a scene, but those things can still happen. They also deal with bullying at school. Many of us with brothers and sisters can likely look back and remember when people teased us about them, and most of our siblings didn’t even have ASD. Imagine what we might have heard if they did. Finally, as parents’ energies get taxed dealing with their child with ASD, sometimes the other children in the family feel overlooked. They might make themselves noticed by trying harder to be perfect, or by doing something so bad the parents have to notice them. Either way, it is also a response to ASD in the family.
In Hamlet, the title character says “there is nothing either good or bad, but thinking makes it so.” This remains as true today as ever it was. Certainly ASD presents challenges to the person with it as well as all those close to him. But that does not mean it is all negative. Individuals with ASD have some outstanding qualities as well, and many have some areas of performance in which they excel. We spend lots of time teaching children with ASD. But we can also learn from them. We can learn about planning, flexibility, understanding differences, kindness, and love. We learn humility, learning about our strengths while learning to ask for – and accept – help from others. Certainly these are good things for us all.
A mother of two children, one with ASD, in the United Kingdom keeps a blog and has compiled many of her entries into a book. The online version of the Daily Mail published a piece from that book this week, and it is powerful reading. It gives a glimpse into her family’s experiences, especially those of her 6 year old son with ASD and his 7 year old brother. Give it a read. I think it can inspire us all.
Russell J. Bonanno, M.Ed.
TAP Program Manager