What’s in a definition? Everything when it comes to a diagnosis of autism.

By Guest Blogger Taryn Williams, Policy Advisor, Office of Disability Employment Policy, U.S. Department of Labor


A recent debate among mental health professionals, families and disability advocates is flaming passions about what it means to be an individual with autism. The American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (D.S.M.), the standard reference for mental health professionals, is in the process of being updated. The APA, which defines autism, is proposing a new and more restrictive criterion for the disorder. That process, and the potential for a narrowed definition, is pitting families and advocates against the experts who traditionally work with them.

During the period of public comment, experts and parents revealed high levels of concern about the new definition, including that some children may not exhibit all of the behavioral and social interaction deficits necessary to meet the new standards. The intensity of the debate is indicative of the level of emotion surrounding the need to ensure that every individual has access to the supports and services he or she need to become successful. Underlying these concerns are worries by parents that their children will not be deemed autistic, and therefore will be ineligible for the specific services that can help ensure future success. What this means: Parents may be forced to emphasize the functional limitations of their child’s particular behaviors in order to access services and supports.

While there has been an abundance of media coverage detailing the concerns of parents, numerous articles explaining the concerns of mental health professionals, few describing the implications to youth. Recently Temple Grandin shared her concerns about the “downside of Autism Awareness.” In an article published earlier this month on Salon.com, she says, “I visit people in [autism] meetings, and a 9-year-old will come up and want to talk about his autism. I’d rather talk about his science project. You get fixated on your favorite thing as a kid, and now kids are getting fixated on autism instead of dogs or medieval knights. I’d rather get them to fixate on that something that could give them a career.”

Further, what impacts might a continued focus on functional limitations have on the expectations that are so critical to later success? What message do we send to youth with autism when we are forced to focus not on what they can do, but on what they struggle to do?

Research conducted by the National Collaborative on Workforce and Disability for Youth and its funder, the Office of Disability Employment Policy at the U.S. Department of Labor, suggests that there are a series of supports and services that all youth, including youth with disabilities such as those with autism, need in order to successfully transition. These supports, which include strong academic preparation; career and work based learning; youth development and leadership; connection to outside supports such as healthcare, transportation and housing; and family involvement, are the keys to the transition into adulthood for all youth.

In the past few decades, a number of strategies have been identified that enable individuals with disabilities to obtain and maintain competitive employment. One such strategy is customized employment, which pairs an individual’s strengths, skills and interests with an employers needs in the workplace.

As the debate rages on, I hope that the conversations broaden to include a focus – beyond the label – on what steps can be taken now to prepare youth for future self sufficiency no matter if they are on or off the spectrum.

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Student uses Face Book to Find Brother

EmpowerTech understands the importance of technology. From becoming prepared for the workforce to connecting with old friends and family, EmpowerTech stresses the value of being tech-savvy. One of our TRADE students, Linda, recently learned just how valuable it is.
Linda became a student at EmpowerTech in August of 2011 and was quickly introduced to e-mail and Facebook. EmpowerTech helped Linda learn how to communicate effectively over social networks for business and personal uses. This past week, Linda decided to use her knowledge gained at EmpowerTech to search for someone very special to her that she had lost contact with, her very own brother. After losing touch, Linda and her brother had not talked for over 20 years, but Linda had not given up hope. She tried hard to resume contact with him but was at a loss until she used her new skills to search for him on Facebook. Today, Linda came into the classroom, tears streaming down her face from being overwhelmed with happiness. She was overjoyed because she had not only found her brother on Facebook, Linda had also begun messaging him and they were finally able to reconnect again.
After 20 years, Linda was able to relocate her brother after EmpowerTech inspired her to keep in touch using technology. We are so happy to have played a role in helping Linda and her brother reunite, and we wish them the very best. Linda is only one example of someone whose life has been changed as EmpowerTech helps students open doors through the use of technology.