Resources scarce for adults with autism

Leah Parker wasn't diagnosed with autism until she was 18.

Despite recognizing the symptoms in her behavior, the 19-year-old University of Iowa English major said her parents had trouble believing her.

Maybe it's because she got 'good at pretending and blending in' by studying others, even though it didn't feel natural. Or perhaps it's because her special interest in dogs is socially acceptable enough to 'slip by without people noticing,' she said.

But when the doctors delivered the news that she is, in fact, autistic, her parents were shocked.

'A lot of people seem to think it's much more rare than it actually is,' Parker said. 'They have a picture in their head that everybody who is autistic is Rain Man or something ...

People just know a lot more autistic people than they realize.'

The disorder was first identified in 1949, but it wasn't until 1970 that a study discovered at least one in 14,000 children in America was autistic. Today, according to the Centers for Disease Control and Prevention, that number has risen to one in 68.

Autism is the fastest-growing developmental disability, increasing almost 120 percent in just 10 years.

Individuals generally develop the disorder early in life, potentially before birth, but often aren't diagnosed until symptoms begin to show around age 2.

Sometimes autism can go undiagnosed. A John Hopkins study found that only eight percent of primary care pediatricians routinely screened for autism. As there isn't a blood test or biomarker for autism, diagnoses are made only on observations of behavior. The average age of diagnosis is between three and four, but autism affects not only children but also adults. Symptoms do not disappear with age.

Mike Dillon, for example, now 38, wasn't diagnosed until three years ago, when his 11-year-old son, Gabe, was diagnosed. Dillon was diagnosed with Asperger syndrome.

Upon first impression, you probably wouldn't know he is autistic. He looks and acts like most anyone, but has always had trouble socializing, barely speaking as a child. Even as an adult, he feels uncomfortable with unscripted social interactions — interacting with strangers 'freaks him out,' he said.

'I know what I'm supposed to do, but it's tricky because it doesn't seem very natural,' he explained.

Teaching math at Jefferson High School for the past two years, however, has not been a challenge. As a teacher, Dillon follows a script that helps him feel 'in control,' he said. Plus, he's always been good at math.

Dillon also admits he has trouble with textures. He can't stand polyester or nylon, preferring jeans, cotton long sleeves and often numerous layers of clothing because 'feeling compressed is comforting,' he said. He always wears at least two pairs of socks, said his wife, Kerris.

Spectrum disorder

These symptoms — difficulty with communication and social interactions, sensory hypersensitivity, obsessive interests and repetitive behaviors — are commonly associated with autism. A host of other issues such as intellectual disabilities, seizure disorders or other mental health issues, often accompany the disorder.

The range and severity of symptoms in each individual widely varies, though, which is why it's considered a 'spectrum disorder.'

On the milder side of the spectrum, individuals often are referred to as 'high functioning.' But autistic people prefer not to use that language, said Parker, who's also a board member of the East Central Autism Society.

'There are no clear and fast rules for what people consider high functioning and low functioning,' she said.

For her, 'functionality' depends on how she's feeling that day. The terminology, she believes, is 'mostly used to discount autistic people's voices.'

Some autistic people, unlike Dillon and Parker, suffer from symptoms so severe that they're unable to speak.

Kevin Oberreuter, a 36-year-old still living at home with his mother Meg, was diagnosed just before turning 4.

He's completely non-verbal, except for vocalizations such as a repetitive hushing noise and occasional moaning. He's prone to pacing, sucking his thumb, repetitively ripping paper and 'flapping,' a common stimulation in which autistic individuals flap their hands or arms, usually accompanied by vocalizations.

Without an effective way to communicate, Kevin becomes frustrated, which sometimes leads to aggressive behavior such as hitting or kicking himself or others.

From age 14 to 24, Kevin lived at the Woodward Resource Center, a state-run facility for the developmentally and mentally disabled. Due to his aggressive behavior and need for attention at all times, Meg, a single mother of three, determined she wasn't able to care for him while also working full-time at Linn County Public Health.

'It's a 24/7, 365 day job,' Meg said. 'If the caregiver didn't show up I'd have to stay home from work, which doesn't bode well for carrying on a career.'

To financially support Kevin, she needed to bring in an income. A study funded by Autism Speaks, a national autism science and advocacy organization, estimated the lifetime cost of supporting an American with autism is around $1.4 to $2.4 million dollars, two-thirds of which could be reduced with early diagnosis and intervention such as behavioral therapy.

In 2004, Kevin moved back home. For years, caretakers would tend to Kevin at home while Meg continued to work. She retired last year.

Today, Kevin spends most of the day at REM, a facility in Hiawatha that provides day services for adults with intellectual and developmental disabilities and other complex challenges. He's in the day habitation program, which teaches basic living skills such as how to use a restroom independently and provides leisure activities, such as geocaching, Meg said. Because of his challenging behaviors, though, he doesn't qualify for prevocational training, which frustrates her, she said, because he has skills that could be vocational, such as shredding paper, for example.

A few hours each week, Meg also receives respite care at home.

Emily Zimmerman has been working with Kevin at home for more than two years. During a recent visit, she and Kevin sat on the couch playing Connect Four, not exactly following the rules. Kevin stared blankly ahead, sliding the discs into rows, over and over.

He's comforted by the repetitive motion, Zimmerman explained. It's one of the ways she keeps him calm.

When he's not occupied, Kevin can become agitated — he might start to pace, hit or sometimes strip off his clothes.

Part of the reason they work so well together is because she's gotten to know him, Zimmerman said. She's learned his body language, what certain vocalizations mean, what might be frustrating him. But even then, you can't always tell what's upsetting him or when an outburst may strike.

Zimmerman recalled the first time she took Kevin to the grocery store. She turned her back for just a moment. By the time she spun around, Kevin, a grown man, had gone running for the candy aisle. He reached the chocolate chips, grabbed a bag and ripped it open with his teeth. Chocolate chips clattered to the floor.

'It's cute when it's a two year old, but when it's an adult ...

,' Meg trailed off. 'People don't understand.'

In fact, it's not uncommon for strangers to stare when they're out in public, she said. If Kevin has an outburst, she tries to quietly leave. But doing so is isolating, she said.

'It would be better if the world were more accepting, or helpful,' she said. 'It takes a whole village.'

Symptoms never go away

We often hear about children with autism, but we don't often hear 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 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.

The United Nations estimates 80 percent of autistic people 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.

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,' Parker said.

'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,' she added.

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?' 'You're good to go, have a nice day,' etc. — 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.

Jeff Stutterheim, a 25-year-old diagnosed when he was three, was able to land a job in the MedLabs of 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 like how to dress and how to act in 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),' Meg Oberreuter said.

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 ten times more likely to consider suicide.

Susie Stutterheim, Jeff's mother, said there are resources out there, but they can be difficult to find. She said 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 like 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 — remember, the lifetime cost of supporting an American with autism is around $1.4 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.