Every day, millions of Americans are working incredibly hard to communicate and socially connect with their loved ones. That effort can take a toll on their emotions, relationships and financial well-being.
Autism, a spectrum of neurodevelopmental disorders, affects how the brain processes information and learns. The social and communication challenges experienced by individuals with autism can make it difficult for a person to speak, make friends and do simple tasks. Everyday situations like going to the grocery store, church and school – and even simple activities at home – can be overwhelming.
Coping with this fear and anxiety sometimes takes the form of an outburst, tantrum or unusual repetitive behavior. Our society needs to change its perception and response to people with autism. With appropriate services and supports, challenges can be addressed and people with autism can and do live meaningful lives.
The good news – documented in the book “In a Different Key: The Story of Autism,” by John Donvan and Caren Zucker – is that we have made progress in the way we perceive and support people with autism.
However, in North Carolina, we still have a long way to go. It is time to change the way that families, employers, educators, communities and policymakers think about, connect to and support people with autism.
Autism is a developmental disability. It has no cure and the cause is unknown. For 3.5 million Americans living with autism, both verbal and nonverbal communication can be challenging. This makes it difficult to relate to people, places or situations.
A child with autism may not understand the simplest facial or verbal expressions from a parent that are so important in forming loving relationships. An adult with autism may not understand body language or have the social skills needed in the workplace. The disconnectedness that results can mean heartbreak for families and a closed door or low ceiling to employment opportunities.
With diagnosis and specialized intervention, children and adults living with autism can learn how to connect with their environment and the people in it – engaging in and contributing to their families and communities.
Scientific research has produced more than two dozen evidence-based methodologies to change behavior, improve skills and increase quality of life for individuals with autism.
Early diagnosis and intervention can reduce the steep cost of lifelong care by two-thirds; however, intensive intervention and support remain beyond the financial reach of most families.
Autism costs U.S. citizens $250 billion a year. The additional cost to educate a student with autism is over $8,600 a year. The lifelong cost of autism for an individual can reach $2.4 million.
As “In a Different Key” makes clear, all is not doom and gloom. Driven in large part by families and advocacy groups, Americans are increasingly aware of autism, and policymakers have taken steps to address the challenges experienced by individuals with autism and their families.
A 1990 federal law required all public schools to educate students with autism. Yet, every day, children with autism still struggle. Their teachers and caregivers typically have not received the appropriate professional development to meet the unique needs of these students.
On July 1, thanks to legislation passed by North Carolina lawmakers in 2015, certain health plans will be required to cover the diagnosis and treatment of autism, including behavioral and other therapies, up to an annual limit of $40,000. It is an important milestone, but its implementation is not without barriers and limitations.
With investment from private philanthropy, evidence-based programs are applying the lessons of behavior analysis in settings for children and adults.
Easter Seals UCP has launched an autism initiative to build new behavioral services and to improve the way its existing programs serve children and adults living, learning and working with autism.
For individuals with autism and their families, daily life does not need to be a continual struggle, isolating experience or financial hardship. The solution lies in changing the way we think about autism and how we support the people who live with it.
Luanne Welch is CEO of Easter Seals UCP, which serves 22,000 people with disabilities and mental health challenges in North Carolina and Virginia – 10 percent of whom live with autism.