The Autism Society of America has designated April as National Autism Awareness Month. Now is a good time to see how government programs have helped people with autism in ways that should make all Americans proud.
Autism is a developmental disorder that affects the functions of the brain and typically appears during the first three years of life. It is a lifelong disability where children and adults with autism have mild to extreme deficiencies in verbal and nonverbal communications, in social interactions and in leisure activities.
The Autism Society of America conservatively estimates that 3.5 million Americans, or about 1 percent of the U.S. population, live with an autism spectrum disorder. Recently, the number of cases of autism in America has exploded. When I started my sojourn in the world of autism 25 years ago, there was one to two cases of autism per 1,000 births. Today, there is one case of autism per 68 births.
Before 1975, the only future for the great majority of children of autism and many other disabilities — after parents no longer take care of them — was custodial care in a state institution. No state gave them the right to a public education because state officials believed these children were uneducable, untrainable and disruptive.
But when Congress passed the Individuals with Disabilities Education Act in 1975, the future for children with disabilities changed dynamically. This law gives every child with a disability a free and appropriate education that meets his or her educational needs. This law helps people with disabilities reach their full human potential.
My sojourn into the world of autism started more than 25 years ago, when my youngest daughter, Leesa, was not developing speech and language skills and she was developing very slowly. Leesa can reproduce the sounds of speech, but she has a very limited attention span that prevents her from learning the meaning of words and group words together.
To help you understand what life is like for children who have a limited or no communication system, ask yourself the following questions:
What would your life be like without a communication system? How would you make friends? How would you entertain yourself? How would you know what was going to happen in your life? How would you behave?
The IDEA law forced educators learn how to educate students with autism. How does one teach a student who has a limited communication system or none at all? During the last 40 years of the enforcement of IDEA, educators have developed strategies to communicate to students with autism using very simple and elegant ideas, which are shown in the following example.
One summer, we took Leesa to an overnight summer camp. We could not tell her she would be spending five days and four nights there because of her limited communication system. When it was time to go, we said, “bye” and left her with her counselor, where she cried. Every morning she packed her bags and said, “bye camp.” The counselor tried to tell Leesa her mommy and daddy were going to pick her up Friday. Leesa could not understand and she cried for a while. How would you behave if you were in her situation?
Shortly after this incident, I learned how to implement a visual calendar to tell Leesa what was going to happen in her life. A laminated monthly calendar with picture symbols taped to it told Leesa the events for each day, such as doctor visits and days when Leesa’s babysitter would take care of her. It did not take long to see how this calendar told Leesa what was going to happen in her life.
Nearly 40 years of government investment have touched people with disabilities in many positive ways. Government programs have given people with autism and other disabilities the opportunity to fulfill their human potential.
Some people with autism have developed to the point where they can go onto college and get good jobs. Others have developed enough so they can get jobs and support themselves in the community. Others still will need supported employment and living arrangements.
All told, the IDEA law has given people with autism a life within the community at a cost that is significantly less than custodial care in a state institution. For that accomplishment, all Americans should be proud.
Bob Carpenter of Union is a parent of a child with autism and a member of the Autism Society of America.