For more than three months, Ron Wright relied only on state unemployment compensation that was to end in June. It eventually continued with a nine-week extension, but at half the amount of his initial jobless pay.
Struggling with autism at the age of 54, Wright, of Iowa City, thought about participating in a medical study that would pay him $3,000. He also has thought about taking a college course partially funded by Vocational Rehabilitation Services, a state agency helping people with disabilities who need jobs. He had a temporary job in August. Finding a job is a chore and he has not had a lot of success with it.
He is not the only adult with autism spectrum disorders (ASDs), which can cause social and communication difficulties, struggling to find employment. The vast majority of adults with autism, the fastest growing developmental disability in the United States, go through frequent job changes when they get work, usually at low-paying jobs, several researchers have reported.
Even individuals with high-functioning autism, like Wright and with normal intelligence, face challenges in getting or holding a job because of deficits in their social interaction and behavior.
Their big problem, doctors and support experts who try to help them say, is that they don’t know the rules for interacting socially with others. “I just can’t convince somebody that I am the best person to be hired for the job,” Wright said.
Recognizing society’s social cues never has been easy for Wright. He said normal things that happen between people were a mystery for him 30 years ago, before he realized he was autistic.
“I didn’t know: How do they know how close together to stand? How do they know what to talk about? There are unwritten rules that I didn’t know about – social context,” he told IowaWatch.
While it is a life-long developmental disability, autism is not labeled as an intellectual disability. That is an important distinction because most public and private support agencies helping people find work or community involvement focus only on individuals with intellectual disabilities. Only one agency in Iowa provides services specifically for adults with autism – The Homestead, of Altoona. But funding for assistance programs is hard to find, its executive director, Steve Muller, said.
Adults with autism who aren’t working cannot pay fees to get into the few supporting programs that may help them. Public money, notably from Medicaid, pays most of the bills.
The Autism Society reports that 1.5 million people Americans live with autism in this country but estimates of how many are adults are elusive. Autism Society leaders said they do not know. Neither do specialists at the Centers for Disease Control and Prevention. “That’s not something they have been studying.” Conne Ward-Cameron, a CDC health communication specialist, said. “Our tracking has been among younger people – children aged 8.”
The most recent CDC data, released in March, estimated that one in 88 children has autism.
Reasons vary for why adults with autism do not get the attention children get.
Wright suggested that people hold out hope that treatment will give children a better chance at having a normal life. But, he continued, autistic adults are considered to be fully developed people and, thus, beyond hope for any change. “They have already reached adulthood, so now they are on their own and are less likely to receive sympathy and assistance,” Wright said.
Muller had another take on the matter. National standards spell out what should be available for children and schools are expected to respond to those standards, he said. Moreover, Muller said, some research has shown substantial progress with early intervention. “There is a general appeal to do more for kids by the public,” he said. “We also see families advocating and generally more active when their children are young.
“But these family members grow weary from their struggle as their children enter adulthood. Funding is also different and generally smaller after school age. So it is likely attributable to a variety of forces.”
Finding work where you can
Stories like Bob Shaffer’s exist, but infrequently.
Shaffer, 24, of Iowa City, has had some job success, even while dealing with a learning disability. He was diagnosed with autism in his childhood and started to participate in training in the seventh grade with the Supported Community Living (SCL) services and Supported Employment program at The Arc of Southeast Iowa, a support service provider in Iowa City. He said that helped him become as independent as possible not only at home, but in the community and workplace.
Shaffer was able to receive Arc support because he meets requirements for an intellectual disabilities waiver. Through job coaching by Arc’s support employment specialists, Shaffer started to work as a seating host at Carlos O’Kelly’s Mexican Café after graduating from a transition program for special education students at Iowa City City High School.
Since 2010, Shaffer also has worked as an office receptionist at Arc.
Separated from funding and support
Chelsey Holmes, associate program director at Arc, said the most typical funding resource for Arc and similar agencies is Medicaid.
“If some people on spectrum don’t qualify for an intellectual disabilities waiver or don’t have a diagnosis of brain injuries, then they may not be qualified for the services,” Holmes said. “So there is a little bit of gap for people on the autism spectrum, especially those that are higher functioning.”
Muller said unemployment or underemployment are among the most serious concerns for adults with autism, “especially among those with an IQ of 75 or above.” He said that many states have waiting lists of people needing help but that the wait in Iowa is better than most. However, employee turnover at a support agency is a problem because of low pay, difficult hours and difficult work, he said.
“Funding for helping adults with any developmental disability, including autism, is severely limited in Iowa,” Muller said. “The few that receive funding have a diagnosis of mental retardation and autism, leaving many without supports. This is a critical problem.”
The Homestead, which serves people with autism from childhood into adulthood, receives about 95 percent of its funding from tax supported funds. About 60 percent is from Medicaid. Local counties provide about 20 percent and the state 15 percent, Muller said.
Increased support could come in a variety of ways, Muller said, including home residential support, vocational help, assistance with transportation and financial planning. Muller said early childhood services are important, as well. “It prevents the need, or at least minimizes the need for expensive, life-long services.”
Josh Cobbs, the chairperson of Iowa Autism Council, explained it this way: “The funding streams need to be flexible to meet the needs of individuals with ASDs.”
Continuous support needed – for lifetime
Dr. Debra Suda, a University of Iowa Hospital and Clinics psychiatrist who focuses on patients with high-functioning autism, said all individuals with autism need life-long help developing social skills and learning. An adult with autism can have strong intelligence but be disabled because of autistic-related problems such as behaving rigidly or interacting improperly with others, Suda said.
That person can benefit from being in groups, led by psychotherapists who teach social skills and help adults figure out what is important, and how to respond in situations, she said.
Ron Wright said that, even though he has learned many social skills over the past 20 years, he needs assistance for certain things. “I still recognize that I don’t make eye contact,” he said.
He explained the difficulty: he focuses only on speaking when communicating. “But now I look at you in the eye, I am communicating with you with eyes. I am not able to keep up doing both.”
Wright got a temporary job at University Book Store in Iowa City, starting Aug. 13 and scheduled to end Aug. 24. “It is OK. It does not matter to me that it is not permanent,” he said.
He had an interview for another job on Aug. 17, he said. The job — helping harvest corn and soybeans on a farm — would start in mid-September if he gets it. He said he will keep looking for work while waiting for a response on the farm job.
Geoffrey Hacker, 41, of Iowa City, who has high-functioning autism, said he went through several jobs before getting his current position at Hy-Vee in Iowa City as a greeter. He said he pushes shopping carts from the parking lot to the store and greets customers while doing that.
“I got fired several times because people would not understand that I have a disability, and it took a long time to get them convinced of my disability,” Hacker said.
Moreover, the jobs usually are low paying.
“So it makes a lot of people with disabilities have to go in the low-income housing, which costs the city, states and government lots of money, and go on food stamps,” Hacker said.
Hacker said he hopes more job coaches can be available to help people with autism explain their disabilities to the employers.
Inability to advocate for themselves
Todd Foldesi, 34, of Iowa City has autism and high intelligence, and works at the Mercy Iowa City medical record department. He said adults with autism have problems in jobs requiring certain skills because they cannot fully express themselves. So they stay in jobs that do not pay as much as others for independence. “Even though I am very underemployed, I will fight to keep my job, because it will allow me independence from government aid,” Foldesi said.
“We can be good employees,” Foldesi said. “We can be very effective, very on the spot, and very positive for the employers. But, just a little of accommodation from the employers is necessary for us to function in a normal job setting.”
Suda said, “People with high-functioning autism often have excellent skills and good attention to detail. Some of the things can be problems for them, but can also be assets if the employers understand that.”
But Suda and others working with adults with autism said the people with autism lack understanding, too. Kenda Jochimsen, bureau chief with the state’s Vocational Rehabilitation Services, took that thought a step further: “One problem we have seen is when we try to bring in supports, we have found there have times when individuals with autism refuse to use it.”
Wright, for example, was set to see a counselor from the Vocational Rehabilitation Services in 1996, he said. It was not until four years ago that he took the support seriously.
Children who will age into adulthood
The Iowa Autism Council’s priorities for 2012 include pushing the state into giving financial incentives to care providers and support staff who achieve approved competency based training in caring for individuals with autism spectrum disorders. The council also recommended that the state Department of Human Services amend its intellectual disabilities waiver to add autism spectrum disorders as an eligible group. A clinical assessment would be used to determine a person’s eligibility for the waiver.
The recommendation has not been adopted. “The private insurance recommendation did pass the Senate on a bipartisan vote, but died in the House,” Josh Cobbs, the Iowa Autism Council’s chairperson, said. “We will continue to work on access to coverage for families in Iowa.”
RELATED READING AND LINKS
New Research Finds Annual Cost of Autism Has More Than Tripled to $126 Billion in the U.S. and Reached £34 Billion in the U.K.
National Alliance on Mental Illness Information Hotline
Autism Society: Facts and Statistics
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