Imagine A Life With Autism
By Caroline Gomez, Ph.D, State Autism Coordinator and State Senator Cam Ward
This editorial appeared in the Huntsville Times, Birmingham News, Montgomery Advertiser, Mobile Press Register, and Tuscaloosa News during Autism Awareness Month. We hope it gave outsiders pause and a new lens with which to view autism.
Close your eyes and imagine for a moment that as a child you are woken in the morning after sleeping for only a few hours. Exhaustion. You get out of bed, but have no idea where you are going that day. Anxiety. Someone helps you get dressed, but the tag in the back of your shirt feels like a pin pricking your skin over and over. Discomfort. You sit at the table for breakfast, but can't eat because your feet don't touch the ground and you begin to feel dizzy. Confusion. You ride in the car without knowing where you are going. Distress. You sit in the grocery cart as told, but the fluorescent lights overhead cause your head to begin throbbing. Pain. Now imagine that all of this takes place and you have no way to tell anyone that your are experiencing exhaustion, anxiety, discomfort , confusion, distress, and now intense pain and this was only the first hour of your day. How would you "communicate" your desperate need to get out of that grocery store before your head explodes? It sounds like a nightmare for many of us but it is a living reality for many children.
Children with autism spectrum disorder (ASD) are often living with these and other all-consuming challenges as they simply navigate through the chaos of an hour or a day. They often can't communicate their desperate needs and this creates an unrealistic expectation from many, including the person in a grocery store passing the child with ASD screaming and kicking in a cart while his mother tries desperately to ignore the obvious display of contempt. Many remain unaware that screaming and other socially unacceptable behavior that is witnessed in such a situation is not willful misbehavior. In fact, the child is likely in distress or pain and simply does not know how to communicate or respond appropriately to his overewhelming and confusing world.
ASD is a complex neurological disorder now present in 1 in every 100 children and 1 in every 70 boys in the United States. These children may have keen interests and skills in certain areas but also have significant difficulty communicating and understanding the social rules of our world. In addition, sights, sounds, and touch can be so overwhelming that they have to scream, literally or otherwise, to get our attention and to get the very basic of needs met.
Have you heard the screams, literal or otherwise, loud or quiet? They cannot be ignored when in such great numbers. Are their screams to know or be known, to understand or be understood, to challenge or be challenged, or any or all of the above? The Alabama Interagency Autism Coordinating Council, created by Act#2009-295 the Riley Ward Alabama Autism Support Act of 2009, is working to meet the urgent need for a statewide comprehensive system of care for individuals with ASD and their families. This Council is a collaborative effort of parents, professionals, elected officials and those who are on the autism spectrum. As we work toward a system of care these children are, in fact, our teachers, teaching us patience, compassion, sensitivity, and unconditional love-the most vital lessons of the human condition.
Please visit http://www.autism.alabama.gov/ to learn of the work in progress and how you can participate in this very worthy effort.