Children with autism grow up to become adults with autism. Many people think about autism as a childhood disorder, not something affecting adults. While 1 in 59 children will be diagnosed with autism at an early age, according to the CDC in 2018, an estimated 50,000 teens grow into adulthood and age out of provided autism services every year, and this trend will continue for the next decade.
Furthermore, many parents of individuals with autism know that after their children age out of educational services at 22, there is a cliff they fall off due to lack of services available for adults with autism. For many families, one of the parents must leave their job to stay home to care for their adult child. Numerous individuals continue to live with their parents until they can no longer support them.
Additionally, one-third of individuals with autism also have an intellectual disability, meaning they have cognitive abilities and adaptive daily living skills significantly lower than the average population. Many of these adults need help with basic daily functions like eating, toileting, shaving and other needs. They may also have severe aggressive and/or self-injurious behavior that requires significant behavioral support to keep them and others safe.
There is also an unmet need for adult vocational skills training programs — specifically for adults with autism. Adults with autism are found to have extremely high unemployment and underemployment rates of 80-85 percent, due to many factors related to their disability. There are also adults with autism with significant needs who can’t be employed, but still need a quality program that continues to provide meaningful opportunities to help them build skills and grow; this type of high-support programming comes at an even greater need. Recent prevalence studies indicate that there are approximately 3,500 adults in Utah who require this level of service and support.
The Adult Autism Treatment Fund, sponsored by Rep. Craig Hall, R-West Valley City, is intended to help families access quality treatment from programs specifically created for adults with autism. This is a great opportunity and a tremendous first step to help more adults with autism access quality services. The fund will be set up as a shell this year with no money being added to it, but it would allow companies and private citizens to add money to the account to help families access services. Previously, there was a similar fund created for young children with autism that was successful in helping families access treatment. All adults who could receive funds, as well as the programs where the funds would be used, would need to meet certain criteria and provide required reporting and information to the state agency overseeing the funds.
Despite these deficits and level of support needed, adults with autism still deserve the opportunity to keep growing, learning, accessing the community, and progressing toward independence. There are many who will still require 24/7 care, but the goal for them should be to maximize their independence as much as possible.
There is a critical need for adult autism services in Utah. Children are aging into adulthood only to find a lack of services to meet their significant needs. While there is a great need for quality programs and services in our community, we cannot solve this issue alone. It will also require legislative support to make these services accessible to all families.