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We often hear about children with autism, but not as much about what happens when they grow up.
Although the disorder can be treated with behavioral therapy — which may improve symptoms or help autistic individuals cope — there is no known cure. Symptoms never go away, preventing many autistic people from living normal lives.
There are a handful of programs that can help teach autistic individuals vocational and independent living skills, usually when they are school-aged to help transition to adulthood. But most of those services disappear once they finish school.
Read more: Resources scarce for adults with autism
The United Nations estimates 80 percent of autistic people in the world are unemployed, even though a survey by the National Autistic Society found that 79 percent of unemployed autistic adults want to find a job.
Much of that is due to the conventional interview process, said Lisa Goring, executive vice president of programs and services at Autism Speaks, an awareness and advocacy organization dedicated to funding research on the causes, prevention, treatments and cure for autism.
When you have difficulty socializing or even speaking, an interview setting in which you must prove your worth by talking about your abilities can be extremely difficult, she explained. Worse yet, if they're completely lacking verbal skills, they're unable to interview at all.
'It's so unfortunate because so many people with autism have really good skills that are beneficial to employers, but they don't get a chance to demonstrate them,' she said.
Even if they make it through the interview, some have difficulty with loud noises, bright lights, uncomfortable uniforms and other sensory issues.
'Some people will have meltdowns at work because their boss doesn't realize the texture of their uniform is driving them nuts,' said Leah Parker, an autistic University of Iowa student and board member of the East Central Iowa Autism Society. 'Having dialogues with autistic people about what their sensitivities are or their threshold for certain things to make a calmer environment from the get go is really important.'
Some, with the support of vocational rehabilitation, training and flexibility of employers, are lucky to find work that suits them.
Parker, for example, works at the UPS store her parents own in Iowa City. Having a script — 'Just a drop off today?' 'Would you like a receipt?' and 'You're good to go, have a nice day,' and the like — helps her work with customers. But most of her time is spent in the backroom, packing boxes with foam peanuts, taping them closed, restocking packing tools and so on.
It's repetitive and quiet — too much background noise, even music, can be overwhelming, she said.
'Sit up, shoulders back'
In Cedar Rapids, Jeff Stutterheim, a 25-year-old diagnosed when he was 3, was able to land a job in the MedLabs of UnityPoint-St. Luke's Hospital in Cedar Rapids — the same hospital where his mother, Susie, works, just down the hallway.
Jeff is responsible for filing paperwork, delivering blood samples across the hospital, emptying recycling bins and a number of other repetitive tasks. He does the exact same thing every day, much to his delight.
Many autistic people enjoy repetition. They're also reliable and loyal, rarely missing a day of work or quitting. Often, too, they're incredibly focused.
Jeff, for example, can finish what might be an entire days work for one person in just a few hours, with absolutely no errors, said Paul Kiburz, director of adult services at the Arc of East Central Iowa, which provides programs and services to individuals and families affected by intellectual disabilities.
Kiburz met Jeff when he was young and worked with him in Project SEARCH, a partnership between the Arc, St. Luke's and Iowa Vocational Rehabilitation Services that provides training and employment opportunities for young adults with disabilities. The program taught interview skills such as how to dress and how to act during an interview — 'Sit up, shoulders back, smile,' recites Jeff. Then they match individual's skills with specific employers.
Just three months into the nine month program, Jeff was offered his job.
Although the program worked for Jeff and several others — nine of 10 participants were placed, according to Kiburz — it's not successful for everyone.
'A one-size-fits-all cookie-cutter model isn't appropriate' for all autistic people, said Meg Oberreuter, the mother of an autistic 36-year-old who still lives with her.
These types of programs are designed for those with mild or moderate symptoms, she explained, but few support her severely autistic son, Kevin.
He's been on a waiting list to get into a group home for 12 years, but without any vocational or independent living skills it's unlikely his position will change, unless someone just like him — male, in his age range and severely autistic — leaves the home.
The problem, Meg explained, is lack of staffing and funding. Very few are willing to do this kind of work because it's physically and mentally demanding.
According to the A.J. Drexel Autism Institute, only 19 percent of American autistic people in their early 20s live independently. Often they're isolated and unhappy, away from social activity and the rest of the community.
A British study found adults with Asperger syndrome are 10 times more likely to consider suicide.
Susie Stutterheim, Jeff's mother, said there are resources out there, but they can be difficult to find. It took a long time and countless phone calls for her to find programs for her son, but she believes sometimes 'parents are afraid of what the future might hold, so they never make the calls,' she said.
When Parker was diagnosed, she found autistic communities online such as the Autism Self Advocacy Network and the Autism Women's Network. Although there are a number of online resources, she said, there aren't many local options, especially for adults and even more so for women.
Meg, 62, feels she's out of options.
Supporting Kevin has been expensive — the lifetime cost of supporting an American with autism is around $1.4 million to $2.4 million dollars — and consuming.
As she ages, she grows increasingly concerned about what might happen if something were to happen to her. She has 'no idea' what would happen to Kevin, she said.
'It's a parent's greatest fear, what happens to a child once the parents aren't around,' she said.
For a list of resources in Iowa, visit autismspeaks.org/resource-guide/state/IA or call the Autism Response Team at (888) 288-4762 between 9 a.m. and 1 p.m.
The East Central Iowa Autism Society also has resources listed on its website, www.eciautismsociety.org, or you call (319) 431-9052.
If you believe you might be autistic, make an appointment with your doctor.