Adults with autism but an IQ above 70 might not have access to new state services.
Bama Hager is caring for a 22-year-old with autism in Alabama. She said she hopes the Alabama Department of Mental Health's (ADMH) new Community Waiver will provide some community activities for her son.
"There just isn't a whole lot available to this adult with autism population in Alabama," Hager said.
Hager considers herself an "Alabama autism advocate." She used to work for the Autism Society of Alabama, which is now known as Autism Support of Alabama.
Children with special needs may receive Individualized Education Plans (IEPs) and become qualified for services through their local school district and the Alabama Department of Education.
For adults, Alabama provides Medicaid waiver services to individuals with "intellectual disabilities."
The new Community Waiver Program is now available in select counties and offers services to individuals with intellectual disabilities based on age and living situation.
Someone has an intellectual disability when their IQ is below 70.
Hager said that there are many adults who have a diagnosis of autism who are not intellectually disabled. This means that they would not be eligible for assistance from the state after they turn 21 unless they have a co-occurring condition, such as schizophrenia.
"Autism is different," said state autism coordinator for the Alabama Department of Mental Health (ADMH) Anna McConnell. "It's not an intellectual disability."
According to Autism Speaks, 31% of children with autism have an intellectual disability; 25% are within IQ ranges of 71 to 85, and 44% have IQs above 85, which is considered average or above average.
Hager also said there are "extensive waitlists" for any Medicaid Waiver Services in the state, presenting an obstacle to even the individuals who do meet the IQ criteria.
Vocational Rehabilitation, a division of the Alabama Department of Rehabilitation Services (ADRS), assists adults in finding employment and can, therefore, serve adults with autism who have an IQ above 70, but this is not a state service specific to autism.
"There are also very few small or private nonprofits who serve adults with autism," Hager said. "There are a few smaller nonprofits doing some great things, but there are not enough service providers working with this population to meet the needs."
Located in Jefferson County, Glenwood is a private, nonprofit organization that provides treatment, education and care to children and adults with disabilities.
Glenwood has both residential and day programs for adults with autism, but most of those receiving Glenwood's services qualify through a state waiver.
Triumph opened in August 2007 in Birmingham to provide support to 16 adults with developmental disabilities after the closure of a local clinic. It has since treated hundreds of individuals in the Birmingham area and added an additional office in Montgomery. Triumph teaches individuals with disabilities to manage their own homes, thrive in the workplace and engage socially.
Huntsville Autistic Adults provides resources to individuals in North Alabama with autism, such as educational and community-building opportunities.
According to the National Library of Medicine, the prevalence of autism in both the U.K. and the U.S. was less than three per 10,000 children in the 1970s. In the 1990s, it was still less than 30 per 10,000.
Per the CDC, by 2000, the prevalence of autism was one in 150. By 2018, this became one in 44.
McConnell said she didn't want to speak to the cause of the drastic increase, as it is highly disputed.
Regardless of the cause, the sudden increase in the prevalence of autism means that an unprecedented population of individuals with autism is about to reach adulthood.
Some 707,000 to 1.1 million teens will age out of school-based autism services over the next decade, according to Autism Speaks.
"They're adults now," McConnell said.
McConnell encourages anyone with questions to contact the ADH Office of Autism Services. You can reach them by phone at 1-800-499-1816 or visit their website here.
Don't miss out! Subscribe to our newsletter and get our top stories every weekday morning.