For Youth With Autism, A Path to Adulthood

Faculty, staff and students are “shining a light” on neurodiversity, with a focus on transitions.

autism awareness
In recognition of Autism Awareness Month, GW has illuminated the Foggy Bottom Campus with the color blue.
April 23, 2014

By Lauren Ingeno

Throughout Autism Awareness Month in April, the George Washington University is joining organizations around the world as they “shine a light” on this complex disorder.

It is estimated that Autism Spectrum Disorder (ASD) now affects 1 in 68 children in the United States, a rate that has nearly doubled since 2000. Three million Americans are currently living with autism and within the next decade, 500,000 of those individuals will enter adulthood.

Heather Russell, director of development for research at GW, fears that with no clear services or programs to successfully transition those young adults into society, the country will leave them in the dark.

“Once they turn 21 and leave school, they are on their own,” she said. “There is no definitive plan out there  to provide options for them.”

But there is hope. At GW, faculty and staff are not only investigating the biological causes of autism, but they are also creating the necessary programs, policies and treatment plans to ensure that young adults with autism will be able to lead independent and fulfilled lives.

With 86 affiliated faculty members from five schools within GW, the interdisciplinary Autism and Neurodevelopmental Disorders (AND) Initiative, initiated by Vice President for Research Leo Chalupa in 2010, brings together a diverse range of experts who are applying a multidisciplinary approach in the areas of research, policy and treatment.

On Wednesday, GW Board of Trustees Chair Nelson A. Carbonell Jr., B.S. ’85 announced that the Nelson A. and Michele Carbonell Family Foundation will give a gift of $2.5 million that will provide an endowment for a professor who will serve as the inaugural director of the AND Initiative. Once a director is in place, the AND Initiative will focus primarily on those transitioning from childhood to adulthood, said Dr. Chalupa.

“As far as I know, there is no other university-based institute in the country that addresses this issue in a systematic way,” Dr. Chalupa said.

While the university seeks to strengthen the AND Initiative in the years ahead, many at GW are already embracing neurodiversity, conducting groundbreaking research and making the university a supportive and accommodating place for those who are on the spectrum.  

Driving Policy and Making Discoveries

At GW, faculty and staff are studying the sociological, biological, anthropological and policy aspects of the disorder.

The Autism Transition Project is led by Milken Institute School of Public Health Professors Olga Price and Donna Behrens, director and associate director of the Center for Health and Health Care in Schools. The project began in 2013 with funding from Mr. Carbonell.

Its mission is to evaluate multiple K-12 school systems, to see how public schools are or are not meeting the transition and planning services of students with autism who have an Individualized Education Plan (IEP).

The GW researchers first looked at state policies across the country to see what types of policies were in place for students transitioning from high school to a work setting. They also conducted interviews and focus groups with the parents of children with autism from schools in Washington, D.C., Maryland and Virginia, in order to better understand from the parent perspective successful programming, gaps in resources, challenges and barriers.

“We recognized that data doesn’t tell the whole story. We hope that this work is going to be the foundation for more in-depth research,” Ms. Behrens said. “As opposed to finding answers, we’re finding out more about what questions still need to be asked and what we still need to know.”

Valerie Hu’s interest in autism research sprung from her personal connection to the disorder—her now 26-year-old son was diagnosed more than two decades ago.

“At the time, and even now, there was so little known about the biology underlying autism, that it made most treatments trial and error, hit or miss,” said Dr. Hu, professor in GW’s Department of Biochemistry and Molecular Biology. “There are really no rational drug for autism spectrum disorders that particularly address its core symptoms.”

Dr. Hu was chosen to chair the AND Initiative’s faculty committee in 2009, which created a strategic plan for the initiative going forward.

Dr. Hu and her team are trying to identify the underlying biological causes of autism, which could lead to novel gene targets in order to develop rational, evidence-based medications for the disorder. Her latest study shows that RORA, a novel candidate gene for autism, regulates a number of other genes associated with the disorder, acting as a “wobbly domino” that, when disrupted or knocked down by genetic or even environmental triggers, can “knock down” other autism-candidate genes. She recently received funding for a new project in which she will identify how environmental factors may also contribute to autism.

Now that her son is an adult, Dr. Hu said she sees the immediate need for the AND Initiative in the D.C. metropolitan area, and she believes with a director, the university will be able to build a “comprehensive institute” that will address the needs of a person with autism throughout his or her lifespan.

“I can tell you from personal experience, that from the point of diagnosis, parents are pretty much left floundering. There is no direction. You don’t know where to turn. You need some sort of guidance, and there is none. And for adults—it’s even worse,” she said. “Focusing on adolescents and adults is something that needs to be addressed.”

Easing the Transition

While autism is characterized by three major symptoms—communication deficits, social deficits and repetitive behaviors—the disorder manifests itself in an almost endless variety of ways, depending on the individual.

With such a wide range of symptoms, figuring out the type of workplace best suited for a particular individual with autism can be a challenging process for both the employer and the employee.

Two programs at GW are aiding in that process by helping young adults with disabilities transition from education to employment.

Project SEARCH is a national, one-year, school-to-work program that facilitates classroom instruction and career exploration through worksite rotations. The 11-month program—launched at GW this year—guides 11 D.C. residents who have disabilities, through three internships at different work sites on the Foggy Bottom and Mount Vernon campuses, with the goal of ensuring that 100 percent of the interns find full-time employment by the time they graduate.

For the Project SEARCH interns who have autism, and others with the disorder, even getting through a job interview can prove difficult, as many people with autism struggle with making eye contact, shaking hands and carrying on a conversation, said GW Project Search Program Manager Emily Lehman, an Ed.D. candidate in the Graduate School of Education and Human Development’s special education program.

The Career Investigations for Transitioning Youth (CITY) program is a collaboration among 11 GW academic departments and three local high schools. Similarly to Project SEARCH, the program’s mission is to provide job training on campus for young adults with disabilities, including autism.

Both programs give interns a range of work experience, not only so that they will build a strong set of employable skills, but also to identify their strengths, weaknesses and interests, said Juliana Taymans, a professor of special education in the Department of Special Education and Disability Studies, who helps facilitate the program.

“You also want to find the right setting for the young adult where those strengths will be appreciated and cultivated. And you have to make sure that the things that they are not good at will not be expected of them,” Dr. Taymans said. “So that is really a process. It’s a process for the young adult with autism, and it’s a process for the employer who is figuring out how that person can be a real benefit in the workplace.”

For Sara Rosenbaum, the Harold and Jane Hirsh Professor of Health Law and Policy in the Milken Institute SPH, and her research assistant Brad Leifer, finding a successful working style has been a process of trial and error.

Mr. Leifer, who has a high-functioning form of autism, was hired to work for Ms. Rosenbaum in 2012. While Mr. Leifer is highly productive and responsible, Ms. Rosenbaum realized she would need to make certain accommodations for him to succeed in her work environment.

“I was essentially socked in the face when I found Brad totally overwhelmed by the first assignments. I realized I had not paid attention to his needs at all,” she said.

Through working with Mr. Leifer, Ms. Rosenbaum saw that her research assistant is able to take in vast amounts of information, but has a difficult time sustaining focus on multiple assignments.

Dr. Rosenbaum learned to give Mr. Leifer specific deadlines, to assign a smaller workload and to break big projects into smaller parts. Today, their working relationship is nearly seamless.

“The working style that Brad and I have developed is not necessarily the working style that is going to work for others with autism,” Ms. Rosenbaum said. “But I think we tend to get carried away thinking that it is somehow a big deal to build a reasonable accommodation into the workplace. Everyone, at some level, has various needs that require accommodation.”

Mr. Leifer’s ultimate goal, he said, is to “help people seek power through knowledge.” And his job at GW has allowed him to do just that.

“I like the peace and quiet in this work environment. I get useful information for Sara every week, and I do good and useful work,” he said.

Colin Weiss, a senior studying psychology in the Columbian College of Arts and Sciences, has a similar goal of helping others who have autism seek power and independence. Mr. Weiss also has autism, and he knows firsthand the challenges young adults face when making the transition from high school to college, including sometimes forgetting to eat meals on time and having trouble socializing with peers.

“For most people who have autism, they do not take change very easily. And most of the self- care skills that most people possess, for whatever reason, just don’t develop all the way,” Mr. Weiss said. “I consider myself fortunate to be on what’s known as the higher end of the spectrum. But there are those that may struggle simply to get through primary school, and some may never be able to live on their own.”

That is why Mr. Weiss has decided he will become a mentor for the next cohort of students who enter the Project SEARCH program.

“I would like to be a mentor for others with ASD,” he said. “With the difficulties I encountered, I thought I should try and help.”

 

                

Lauren Ingeno