The prevalence of autism is rising, and the DD community would do well to familiarize itself with this lifelong condition, and local efforts to advocate for policy and awareness.
What is Autism?
The CDC website provides a large amount of helpful information to inform and educate. Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder.
There is no medical test to diagnose ASD. Medical professionals instead rely on the behavior of an individual to identify the disorder. Per the CDC website, children or adults with ASD may:
- not point at objects to show interest (for example, not point at an airplane flying over)
- not look at objects when another person points at them
- have trouble relating to others or not have an interest in other people at all
- avoid eye contact and want to be alone
- have trouble understanding other people’s feelings or talking about their own feelings
- appear to be unaware when people talk to them, but respond to other sounds
- be very interested in people, but not know how to talk, play, or relate to them
- repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language
- have trouble expressing their needs using typical words or motions
- not play “pretend” games (for example, not pretend to “feed” a doll)
- repeat actions over and over again
- have trouble adapting when a routine changes
- have unusual reactions to the way things smell, taste, look, feel, or sound
In 2016, the Centers for Disease Control and Prevention issued their Autism and Developmental Disabilities Monitoring (ADDM) Network autism prevalence report. The report concluded that the prevalence of autism had risen to 1 in every 68 births in the United States – nearly twice as great as the 2004 rate of 1 in 125 – and almost 1 in 54 boys. In fact, autism is about 4.5 times more common among boys (1 in 42) than among girls (1 in 189). It occurs in all racial, ethnic, and socioeconomic groups.
The Autism Society of Ohio is an affiliate of the Autism Society of America, the nation’s leading grass roots autism organization. Per the website, “The Autism Society exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people with ASD, advocating for appropriate services across the life span, and providing the latest information regarding treatment, education, and advocacy. ASO is a coalition of local Autism Society affiliates focusing on statewide advocacy and awareness and provision of services in areas not covered by a local affiliate.”
The Autism Society of Ohio provides the infrastructure for the seven Autism Society affiliates in Ohio. The goal is to increase autism awareness, influence policy, and mobilize advocacy efforts in Ohio.
The spotlight shining on autism as a result has opened opportunities for the nation to consider how to serve families facing a lifetime of supports for their children. In June 2014, researchers estimated the lifetime cost of caring for a child with autism is as great as $2.4 million. The Autism Society estimates that the United States is facing almost $90 billion annually in costs for autism. (This figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, related therapeutic services and caregiver costs.
Advocating for Policy Change
Per the website, they are influencing significant policy change at the state level. These include the following laws, rules and policies:
Finally, The Autism Society of Ohio supports a number of events, from regional support groups, and local affiliate events, to regional and national conferences that all serve to further the discussion of ASD.
Photo by John Brighenti