aging with autism

8/10/2019 Aging With Autism

http://slidepdf.com/reader/full/aging-with-autism 1/8

Aging with Autism

Scientists and healthcare professionals specializing in Autism SpectrumDisorders, or ASD, the now well-known range of developmental disabilities

typically diagnosed in childhood, have logged thousands of hours in theirquest to better understand the disorder‟s causes, develop effectiveinterventions and offer psychological support for autistic children andtheir parents.

By most accounts, these efforts have paid off in providing better options foryoung people affected by the disorder. But what happens when these kidsgrow up?

Here the story becomes more problematic, says MU researcher and authorScott 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 seriouslyunderserved 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 dobetter: Adult Autism and Employment: A Guide for Vocational Rehabilitation

Professionals . Although the guide has “autism” in its title, it covers the fullrange of neurologically based disorders that affect thinking, perception,attention, social skills and behavior. Researchers now call this broad group ofdisorders “the autism spectrum.”

“Until now, there hasn‟t been a resource available to employment serviceproviders that is specific to autism and provides recommendations to helpwith the features of this growing population,” Standifer says. “This guideprovides specific advice on a variety of employment issues for adults with ASDand, 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 in3,000. 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 findbasic statistics, including prevalence rates, on ASD in adults. “The focus hasbeen on children,” he says. “Whereas when you think about people inwheelchairs, you think about adults, or when you think about folks withblindness or seizure disorders, there‟s material out there about adults.”

http://healthprofessions.missouri.edu/



http://www.dps.missouri.edu/Autism.html?cmpNWS




http://www.cdc.gov/ncbddd/autism/index.html




http://healthprofessions.missouri.edu/dps/index.php













Dr. Cathy Pratt chairs the board of directors for the Autism Society, a nonprofitadvocacy organization based in Bethesda, Md. Pratt agrees that adult ASDdeserves 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 realizingthat we‟re going to be seeing an increase in the number of adultsneeding support.”

That increase is already here, Standifer says. From 2003 to 2008, the latestyear for which figures are available, the number of people with ASD applyingfor vocational rehabilitation services increased 337 percent nationwide. Thisrate of increase matches, almost exactly, the increase first spotted amongspecial education children from 1993 to 1998. That full data set spans evenmore years, with a cumulative increase reaching nearly 800 percent. Standifer

notes that the time difference between the two data sets, a decade, is justabout enough time for the group of young children who were diagnosed in1993 to begin finishing high school.

The vocational rehabilitation system is a network of state agencies operatingunder the federal Rehabilitation Service Administration. Its goal isstraightforwardly simple: to help people with disabilities have successfulcareers. The guiding assumption of vocational rehabilitation, or VR, is thatemployment and productivity lead to independence, a right all Americansshould enjoy. The Disability and Policy Studies unit at MU provides advice and

continuing education to counselors and service providers at agencies inMissouri, Iowa, Nebraska and Kansas.

“We do not provide direct services to people with disabilities; we support thesystem that serves them,” Standifer says. Because VR clients have a range ofdisabilities —physical, psychiatric, cognitive, neurological —counselors must fittheir 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-onereference. That book, The Handbook of Disabilities , represented a major

overhaul of a previous guide written in the early 1990s by Disability Policy andStudies and Nebraska Vocational Rehabilitation.

Standifer, who at the time had just finished his doctorate in educationalpsychology and instructional design at MU, served as the handbook‟s leadauthor. The handbook includes entries on about three dozen of the mostcommon disabilities seen among VR clients. A focus group of counselorshelped guide the handbook‟s development. While researching most of the

http://www.iidc.indiana.edu/irca/Staff/DrCathyPratt.html


http://www.autism-society.org/



http://www2.ed.gov/about/offices/list/osers/rsa/index.html



http://www.vocrehab.state.ne.us/











entries, Standifer used traditional reference texts, medically authoritative websites, and the web sites of prominent disability advocacy groups. But when hebegan work on the entry for ASD, he discovered “a big black hole inthe literature.”

“There were a lot of generalities, it seemed, and a lot of assumptions aboutadult support needs based on school supports, but not much practicalinformation,” Standifer says. “Instead, I found a lot of comments to the effectthat, „People with ASD are very diverse and hard to generalize, so get to knowthe client and match the job to his or her characteristics.‟ That is like telling astudent driver, „Watch the road and keep alert.‟ It doesn‟t tell youanything useful.”

Standifer did the best he could with what was available, completing the ASDentry in 2003. But he was never satisfied with it. Then in late 2007,

the National Institute on Disability and Rehabilitation Research announced a grantcompetition 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, saysStandifer‟s unique background in graphic design (a bachelor‟s degree), journalism (a master‟s degree), and educational psychology/instructionaldesign (a doctorate) equipped him for the challenge. Standifer‟sunderstanding of VR also got a boost from his work developing an online,

“Orientation to Rehabilitation” course, Roberts says, helping him learn theappropriate language and appreciate VR‟s “person-centered values.”

“One of the philosophical points we have [is that] we believe every personwho comes through the door at VR is employable with the appropriatesupports,” Roberts says. “There‟s no such thing as a person who‟s tooseverely disabled to work.”

Standifer began his grant application with a formal literature review whichconfirmed 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, 10people with high-functioning autism at a time in one city or another. And[they were] making sweeping generalizations from that,” he says. “Thesamples were always skewed to the high-functioning end of the spectrum, thefolks with good verbal skills who are easy to interview. What about the folkswith lower verbal and social skills? What about their needs and experiences?”

http://www2.ed.gov/about/offices/list/osers/nidrr/index.html






Job Training Keli Edler, a caseworker with St. Louis-based TouchPoint

Autism Services, meets with David Haun at the Central Missouri Food Bank inColumbia. Haun volunteers his time at the food bank, working with Edler onsocial skills and workplace behavior.



“To my delight, in the transcript he was actually giving concrete advice aboutsupporting people with ASD on the job. He talked about creating visualprompts and icons to help folks who are not verbal. He talked about theimportance of routinizing work activities from the first day. People with ASD

are strongly attracted to routine. If you spend days one and two givingsomeone with ASD a tour and reviewing the policy manual, guess what theythink will happen on days three, four and five?. He talked about helping co-workers understand the social skills support needs of persons with ASD. Hetalked 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 allthe 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 servicesto people with ASD. Later he worked on an initiative to hire hundreds ofpeople with disabilities, a majority with ASD, at a new Walgreens distributioncenter in South Carolina.

Emmett did far more than introduce his clients to a potential employer; hehelped design the facility, programmed job support services and establishedcorporate 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 helpwith the grant application. Emmett agreed.

“My initial reaction was joy that somebody from a university setting wastaking this on,” Emmett says. “I had seen nothing published specific to adultsor young adults and employment, so it was great to see a university takingthat 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 organizationin Austin, Texas.

Despite his disappointment, he knew the information he and Emmett hadbetween them would be a treasure trove for VR counselors, as well as forbusinesses interested in hiring people with ASD. Standifer also knew hewanted to work further with Emmett. The first project that came to mind wasrevising the ASD entry in The Handbook of Disabilities , but he soon realized

http://www.sedl.org/








that with Emmett‟s material he now had enough information to give ASD itsown document. So he expanded the entry into what became the Adult Autismand 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 initialinterview, career planning issues for counselors and clients to consider,emerging “hot topics,” web addresses of organizations and informationalsites, as well as the drugs commonly used by people with the disability andthe 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 ASDcharacteristics, he wanted to describe those characteristics individually so thatcounselors might better understand how they affect employment. Next, he

wanted to offer practical tips on how counselors could adapt their services tomeet ASD patients‟ needs.

In the “functional description” of ASD, for example, the guide describes atendency among people with autism to “think concretely rather thanabstractly” and explains how this can “lead to problems with planning andunderstanding sequences.” Later, in the section listing suggestions forinterview accommodations, counselors find a tip to provide clients, well inadvance, with “an outline/schedule of the interview, with a unique symbolassociated 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 communicationstyles and limitations of clients with ASD prior to meeting with them. She isalso asking if external stimuli might bother clients, using the information toprepare a comfortable setting. Finally, Smith says, she is allowing more timefor meetings, a guide recommendation that has helped clients betterprocess 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 helpcreate forms that will help with the intake process,” she says. “Additionally, Iam part of a team that is using the guide to help develop somespecialized services.”

In the first eight months the guide was online, Standifer says, it wasdownloaded 3,200 times. A recent tally indicated there were still about eight

http://dese.mo.gov/vr/springfieldsouth.htm








downloads each day. A number of prominent autism and vocationalrehabilitation 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, anonprofit Chicago company known for training people with ASD to work forsoftware development companies. Specifically, Aspiritech targets those with Asperger‟s Syndrome, a disorder on the spectrum‟s high-functioning end. Thecompany is modeled on the Danish company Specialisterne.

“As soon as I saw [the guide], I sent it to many people I know,” saysWeitzberg. “For example, we have many people coming in who potentially aregoing to be managers. These people have a background in software but arenot necessarily knowledgeable about autism. I think [the guide] is a great

introduction for someone in the VR field or a company working with peoplewith autism.”

While the guide has received overwhelming praise, Standifer realizes it islimited by the lack of studies on adults with autism. Emmett, too, seesthis shortcoming.

“Scott‟s is the one and only resource I know of that a VR counselor can pickup, and it will give them ideas on how to serve people with autism,” Emmettsays. “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 abouthow effective these support strategies are.”

Standifer knows of two current projects aimed at gathering data onemployment supports for adults with ASD. One is the aforementioned SEDLproject; the other is a collaborative initiative between

http://www.aspiritech.org/




aging with autism

Documents