Aging with Autism
Scientists and healthcare professionals specializing in Autism Spectrum Disorders, or ASD, the now well-known range of developmental disabilities typically diagnosed in childhood, have logged thousands of hours in their quest to better understand the disorder’s causes, develop effective interventions and offer psychological support for autistic children and their parents.
By most accounts, these efforts have paid off in providing better options for young people affected by the disorder. But what happens when these kids grow up?
Here the story becomes more problematic, says MU researcher and author Scott Standifer. The reality, he fears, is that people with ASD, the same ones treated with great care and concern as children, are likely to be seriously underserved as adults.
Standifer, a clinical associate professor in the MU School of Health Professions, is the author of a new guide designed to help disability service providers do better: Adult Autism and Employment: A Guide for Vocational Rehabilitation Professionals. Although the guide has “autism” in its title, it covers the full range of neurologically based disorders that affect thinking, perception, attention, social skills and behavior. Researchers now call this broad group of disorders “the autism spectrum.”
“Until now, there hasn’t been a resource available to employment service providers that is specific to autism and provides recommendations to help with the features of this growing population,” Standifer says. “This guide provides specific advice on a variety of employment issues for adults with ASD and, ultimately, helps the counselors find jobs for their clients.”
The Centers for Disease Control and Prevention today estimate that one in 110 American children has an ASD; in the 1970s, the accepted estimate was one in 3,000. The rise in diagnoses has brought a surge of attention to helping kids with the disorder. But as these children age, interest wanes.
When Standifer began researching ASD for the Disability Policy and Studies office of the MU School of Health Professions, he could not even find basic statistics, including prevalence rates, on ASD in adults. “The focus has been on children,” he says. “Whereas when you think about people in wheelchairs, you think about adults, or when you think about folks with blindness or seizure disorders, there’s material out there about adults.”
Dr. Cathy Pratt chairs the board of directors for the Autism Society, a nonprofit advocacy organization based in Bethesda, Md. Pratt agrees that adult ASD deserves more attention.
“Reality has hit that individuals ‘on the spectrum’ grow up and become adults, and we have to attend to this population,” Pratt says. “People are realizing that we’re going to be seeing an increase in the number of adults needing support.”
That increase is already here, Standifer says. From 2003 to 2008, the latest year for which figures are available, the number of people with ASD applying for vocational rehabilitation services increased 337 percent nationwide. This rate of increase matches, almost exactly, the increase first spotted among special education children from 1993 to 1998. That full data set spans even more years, with a cumulative increase reaching nearly 800 percent. Standifer notes that the time difference between the two data sets, a decade, is just about enough time for the group of young children who were diagnosed in 1993 to begin finishing high school.
The vocational rehabilitation system is a network of state agencies operating under the federal Rehabilitation Service Administration. Its goal is straightforwardly simple: to help people with disabilities have successful careers. The guiding assumption of vocational rehabilitation, or VR, is that employment and productivity lead to independence, a right all Americans should enjoy. The Disability and Policy Studies unit at MU provides advice and continuing education to counselors and service providers at agencies in Missouri, Iowa, Nebraska and Kansas.
“We do not provide direct services to people with disabilities; we support the system that serves them,” Standifer says. Because VR clients have a range of disabilities—physical, psychiatric, cognitive, neurological—counselors must fit their services to meet diverse needs. To help counselors meet this challenge, the MU Disability and Policy Studies unit, in partnership with the Nebraska Vocational Rehabilitation Agency, ten years ago began developing an all-in-one reference. That book, The Handbook of Disabilities, represented a major overhaul of a previous guide written in the early 1990s by Disability Policy and Studies and Nebraska Vocational Rehabilitation.
Standifer, who at the time had just finished his doctorate in educational psychology and instructional design at MU, served as the handbook’s lead author. The handbook includes entries on about three dozen of the most common disabilities seen among VR clients. A focus group of counselors helped guide the handbook’s development. While researching most of the entries, Standifer used traditional reference texts, medically authoritative web sites, and the web sites of prominent disability advocacy groups. But when he began work on the entry for ASD, he discovered “a big black hole in the literature.”
“There were a lot of generalities, it seemed, and a lot of assumptions about adult support needs based on school supports, but not much practical information,” Standifer says. “Instead, I found a lot of comments to the effect that, ‘People with ASD are very diverse and hard to generalize, so get to know the client and match the job to his or her characteristics.’ That is like telling a student driver, ‘Watch the road and keep alert.’ It doesn’t tell you anything useful.”
Standifer did the best he could with what was available, completing the ASD entry in 2003. But he was never satisfied with it. Then in late 2007, the National Institute on Disability and Rehabilitation Research announced a grant competition for the development of a VR service model for people with ASD.
Standifer wanted to give it a shot, despite the fact that he had, as he puts it, “no real background in autism or VR research.”
C. David Roberts, director of Disability and Policy Studies at MU, says Standifer’s unique background in graphic design (a bachelor’s degree), journalism (a master’s degree), and educational psychology/instructional design (a doctorate) equipped him for the challenge. Standifer’s understanding of VR also got a boost from his work developing an online, “Orientation to Rehabilitation” course, Roberts says, helping him learn the appropriate language and appreciate VR’s “person-centered values.”
“One of the philosophical points we have [is that] we believe every person who comes through the door at VR is employable with the appropriate supports,” Roberts says. “There’s no such thing as a person who’s too severely disabled to work.”
Standifer began his grant application with a formal literature review which confirmed the dearth of solid studies on adults with ASD and employment.
“A variety of people were publishing, but at best, they were talking to, say, 10 people with high-functioning autism at a time in one city or another. And [they were] making sweeping generalizations from that,” he says. “The samples were always skewed to the high-functioning end of the spectrum, the folks with good verbal skills who are easy to interview. What about the folks with lower verbal and social skills? What about their needs and experiences?”
Finally, in the bibliography of a research review from the Rehabilitation Services Administration, Standifer spotted a URL pointing him toward the transcript of a presentation hosted by one of the Disability Policy and Studies’ sister projects in Illinois.
“The link was still active, so I pulled it up and read the remarks of some guy named James Emmett. There was no ‘Ph.D.’ after his name, no ‘researcher at...,’ no ‘specialist with...,’ no ‘author of...,’—just James Emmett.
Job Training Keli Edler, a caseworker with St. Louis-based TouchPoint Autism Services, meets with David Haun at the Central Missouri Food Bank in Columbia. Haun volunteers his time at the food bank, working with Edler on social skills and workplace behavior.
“To my delight, in the transcript he was actually giving concrete advice about supporting people with ASD on the job. He talked about creating visual prompts and icons to help folks who are not verbal. He talked about the importance of routinizing work activities from the first day. People with ASD are strongly attracted to routine. If you spend days one and two giving someone with ASD a tour and reviewing the policy manual, guess what they think will happen on days three, four and five?. He talked about helping co-workers understand the social skills support needs of persons with ASD. He talked about enhanced sensitivity to environmental stimuli (sounds, lights, conversations, textures, patterns) that can easily distract people with ASD.
“With James Emmett, I had hit pay dirt,” Standifer says. “The contrast with all the formal literature was amazing.”
Standifer discovered that Emmett had earned a master’s degree in rehabilitation counseling and had then gotten involved with a few grant-funded community-based projects in Chicago to provide employment services to people with ASD. Later he worked on an initiative to hire hundreds of people with disabilities, a majority with ASD, at a new Walgreens distribution center in South Carolina.
Emmett did far more than introduce his clients to a potential employer; he helped design the facility, programmed job support services and established corporate hiring and training systems targeting people with disabilities.
Standifer was impressed with Emmett’s extensive experience in VR, ASD and the business community. He contacted Emmett to see if he would help with the grant application. Emmett agreed.
“My initial reaction was joy that somebody from a university setting was taking this on,” Emmett says. “I had seen nothing published specific to adults or young adults and employment, so it was great to see a university taking that interest... Being on the practice side, I could bring real-life examples, real-life strategies and lessons learned.”
In the end, Standifer did not win the grant. It went instead to the Southwest Educational Development Laboratory, a private, nonprofit research organization in Austin, Texas.
Despite his disappointment, he knew the information he and Emmett had between them would be a treasure trove for VR counselors, as well as for businesses interested in hiring people with ASD. Standifer also knew he wanted to work further with Emmett. The first project that came to mind was revising the ASD entry in The Handbook of Disabilities, but he soon realized that with Emmett’s material he now had enough information to give ASD its own document. So he expanded the entry into what became the Adult Autism and Employment guide.
The guide includes a detailed overview of ASD followed by lists of practical information and tips, such as questions and accommodations for the initial interview, career planning issues for counselors and clients to consider, emerging “hot topics,” web addresses of organizations and informational sites, as well as the drugs commonly used by people with the disability and the drugs’ common side effects.
As Standifer saw it, two key changes were needed in ASD resources. First, rather than offer blanket statements about the diversity of ASD characteristics, he wanted to describe those characteristics individually so that counselors might better understand how they affect employment. Next, he wanted to offer practical tips on how counselors could adapt their services to meet ASD patients’ needs.
In the “functional description” of ASD, for example, the guide describes a tendency among people with autism to “think concretely rather than abstractly” and explains how this can “lead to problems with planning and understanding sequences.” Later, in the section listing suggestions for interview accommodations, counselors find a tip to provide clients, well in advance, with “an outline/schedule of the interview, with a unique symbol associated with each activity or phase.” That level of detail makes the guide particularly helpful, say counselors.
Robyn Smith, a VR counselor in Rolla, Mo., calls the guide a “wonderful tool” and, following its guidance, has started asking about the communication styles and limitations of clients with ASD prior to meeting with them. She is also asking if external stimuli might bother clients, using the information to prepare a comfortable setting. Finally, Smith says, she is allowing more time for meetings, a guide recommendation that has helped clients better process information.
Melanie McDonald is an autism specialist for Missouri’s Springfield South Vocational Rehabilitation office. “I have read the guide and am using it to help create forms that will help with the intake process,” she says. “Additionally, I am part of a team that is using the guide to help develop some specialized services.”
In the first eight months the guide was online, Standifer says, it was downloaded 3,200 times. A recent tally indicated there were still about eight downloads each day. A number of prominent autism and vocational rehabilitation groups have linked to the guide on their web sites.
People in the VR system account for more than two-thirds of the downloads. Brenda Weitzberg is one fan of the guide who is outside that system.
Weitzberg, whose 30-year-old son has autism, is the founder of Aspiritech, a nonprofit Chicago company known for training people with ASD to work for software development companies. Specifically, Aspiritech targets those with Asperger’s Syndrome, a disorder on the spectrum’s high-functioning end. The company is modeled on the Danish company Specialisterne.
“As soon as I saw [the guide], I sent it to many people I know,” says Weitzberg. “For example, we have many people coming in who potentially are going to be managers. These people have a background in software but are not necessarily knowledgeable about autism. I think [the guide] is a great introduction for someone in the VR field or a company working with people with autism.”
While the guide has received overwhelming praise, Standifer realizes it is limited by the lack of studies on adults with autism. Emmett, too, sees this shortcoming.
“Scott’s is the one and only resource I know of that a VR counselor can pick up, and it will give them ideas on how to serve people with autism,” Emmett says. “I do think that the strategies I talk about and he talks about—there needs to be much more research for this topic. We don’t know a lot about how effective these support strategies are.”
Standifer knows of two current projects aimed at gathering data on employment supports for adults with ASD. One is the aforementioned SEDL project; the other is a collaborative initiative between
Virginia Commonwealth University and the Virginia Department of Rehabilitation Services. Both are looking at about five years of research before drawing conclusions. Thanks to Standifer’s guide, Emmett says, VR counselors won’t have to “fly by the seat of their pants” until this and other research is available.
Because the guide “takes the best of the best” of existing information and makes it user-friendly for counselors, Emmett says. “It’s going to impact their practices right away.”