Facts About Autism
FACTS ABOUT AUTISM
Autism Spectrum Disorder (ASD) is a lifelong neurodevelopmental disorder that is not outgrown. The effects of autism on cognition, emotional regulation, language and social communication, and relationship skills are present across the lifespan. No two people with ASD are the same and support and service needs vary greatly and continually change throughout the course of a lifetime. Often further complicating the matter, 60 percent of young adults with ASD have at least two health or mental health conditions in addition to ASD diagnosis.
The Centers for Disease Control and Prevention notes that 1 in 59 children have ASD and 50,000 young people with ASD exit high school each year. Approximately half million youth with ASD will enter adulthood over the next decade. According to a 2017 report from the Interagency Autism Coordinating Committee, only 1% of all autism research funding supports investigation of topics related to adulthood and aging.
When a young adult with ASD exits high school, or turns 22 years old, services for the young adult come to an end. Families often refer to this time period as “falling off a cliff” - a time period in which there is a dramatic decline in access to services during the transition to adulthood. The National Autism Indicators Report found that during high school, 97 percent of youth with ASD received at least one service such as case management, transportation or occupational therapy. By the time this same young adult reached their early twenties, 26 percent no longer received any type of service or support. The report further indicated that nearly 60 percent of young adults with ASD and their parents said they needed services especially vocational/job training, as more than one-third of young adults with ASD do not transition into employment or continue education between high school and their early 20’s.
After high school young adults with ASD have higher rates of disconnection than their peers with other disabilities. Because of missed connections to jobs, continued education and opportunities for independence, youth have difficulty establishing quality adult lives. The report further notes that parents were most concerned that their young adult would never live independently (81%) or live apart from them (68%). They were also concerned that their child had no post-secondary education (64%) or employment (42%) opportunities.
The 2017 National Autism Indicator Report found that paid, community-based employment was the least common outcome for adults with autism spectrum disorder (ASD). Only 14% held a job for pay in the community.
Social isolation is another concern for young adults with ASD as one in four reported not having any community participation (community service, lessons outside of school) in the last year. The 2017 National Autism Indicators Report found that almost half (49%) o f adults with ASD lived in the home of a parent or relative and 41% reported feeling lonely sometimes. According to the 2013 housing survey completed by Autism Speaks, families across the country are most concerned about their family member’s practical and emotional needs being met in their future housing situation, and this concern outweighs their preference for even housing style and location.
Urban Autism Solutions (UAS) was formed in 2013, in recognition of the complexity of these problems and with the determination to acquire the most sophisticated solutions available to meet these challenges. We take into consideration what Dr. Paul Shattuck refers to as a “life course” perspective which looks at the entire span of life and emphasizes challenges related to quality of life.
We are helping young adults who need prolonged transition supports to find a niche within our urban community, providing both parallel and intersecting paths with typical peers. With the help of the RUSH Autism Assessment Research and Treatment Services (AARTS) Center, a leading institution at the forefront of research and treatment for autism, UAS has already begun providing solutions for more than 300 young adults with ASD and their families, through our programs and services.
We believe, and continue to prove, that the lifetime societal costs of providing housing and caring for those with ASD can be dramatically reduced if the right living, learning and therapeutic supports are provided beyond age 22. By combining person-centered plans, including meaningful vocational opportunities, well-timed clinical interventions and medication management, with social and residential supports, we are creating solutions for young adults with ASD.