Autism is on the rise: More than 1.5 million people have the condition in the United States alone. But because the majority of these people are younger than 22, the country is on the verge of an “autism tsunami” that could leave thousands without the support they need as they become adults, according to Autism Speaks, an autism advocacy organization.
“The current system we have right now is woefully inadequate,” says Angela Lello, director of housing and community living at Autism Speaks. “There are lots of long waiting lists. In some states, it can take as long as 10 years to gain access to [these support] services.”
Defined as a developmental disorder that can impair social, communication and behavioral skills, autism is a spectrum disorder that can range in severity from person to person. Some individuals with autism are considered high-functioning and can live independently requiring minimal, if any, help.
Others, however, may need partial or full supervision and assistance to navigate even the most basic tasks of everyday life. “A person who is nonverbal or who has significant intellectual disability will require substantial support in adulthood, and fully independent living will not be possible,” says Thomas Challman, medical director and neurodevelopmental pediatrician with the Geisinger Health System Autism & Developmental Medicine Institute in Pennsylvania.
Every state offers Medicaid-funded programs for people with autism, which can be accessed through each state’s Developmental Disability Agency. These services can include home health aides to help with daily functions such as dressing and bathing, as well as job placement and housing assistance, Lello says. Yet, since more than 50,000 individuals with autism transition into adulthood every year, the support services are already being outpaced by their demand, she adds.
To help fill this gap, President Barack Obama recently signed into law the Autism Collaboration, Accountability, Research, Education and Support Act of 2014.
Also known as the Autism CARES Act, it will give $1.3 billion over five years to fund autism research and detect gaps in support for children and adults with autism who are aging out of childhood programs and transitioning into those designed for adults.
“We need to do a better job of preparing children with [autism spectrum disorder] for adulthood and provide the help and services they need to reach their full potential,” said the bill’s co-sponsor Rep. Chris Smith, R-N.J., on the House floor in June.
“The Autism CARES Act tasks multiple federal agencies to study and report back to Congress on the special needs of autistic young adults and transitioning youth. In light of the severity of the aging-out crisis, we must do more – and fast – and ensure we are providing a comprehensive and thorough review of available services, and those we need to create.”
But as parents wait for more services to become available, there are options available now to help children with autism thrive, says Challman, starting with early intervention therapy.
“ Parents of children with [autism] can improve the likelihood of independent living by accessing, early and consistently, the types of therapies that help improve their child’s communication and social skills,” he says – areas that have significant impact on a child’s ability to succeed in work and social settings.
Read More: Here