By Shea Northcut

(AXcess News) Washington - Joey Rosenbloom, 22, uses a "life writer" to communicate. Sharen Rosenbloom assists her son in every task, from tying his shoes to combing his hair. But the reality Joey faces is what will happen when his mother is gone - an issue that 500,000 autistic children growing into adulthood must figure out.

Autism spectrum disorder ranges from mild to severe developmental disabilities. ASD affects people in social and behavioral ways. Some are unable to develop life skills because they cannot speak and are unable to interact with people, while others cannot control their actions. Autism is not just a childhood disease - it never goes away.

The Advancing Futures for Adults with Autism consortium met in Washington on Thursday to urge policymakers, advocates and others to make numerous changes. Those include training service providers how to interact with autistic people, new funding to meet individual needs and expanding incentives for housing.

Joey and five other autistic people, ages 22 to 54, told the audience of 250 people what they face now and what's ahead.

"My goal is to find a university longing to house and educate individuals living with autism," Joey said, using his device. "I dream of living on a campus and learning from professors and not just special educators."

The Centers for Disease Control and Prevention estimates that one in 110 children have autism, including one in 70 boys, most of whom are diagnosed before the age of 5.

As these children grow up, partnerships and collaborations need to "ensure that the adults who have autism can break free of the status of dependency and can ultimately become taxpaying citizens," said Lisa Goring, national director of family services at Autism Speaks.

The key issues revolve around the lack of funding, housing, employment and community. A 2007 study by Michael Ganz, "The Cost of Autism in the United States," found that it costs society $3.2 million to care for one individual with autism over a lifetime. This includes medical costs, behavioral therapies, special education and many others.

Housing communities and training in basic life skills, such as cooking, cleaning and talking with others can reduce those costs. But creating specialized housing has been complicated because it requires multiple funders with different requirements and rules. It took five years to create one 14-unit housing project.

Anna Hundley, executive director of autism treatment centers in Texas, said the autism community needs to shift from crisis mode to a system of planning for the future.

"We are now waiting until they are in a dire crisis, resulting in hospitalization and more bills," Hundley said.

She said that when autistic persons need hospitalization, they often get physically aggressive, injuring themselves and staff members. Training hospital staff members can reduce problems.

An Easter Seals study showed that up to 80 percent of individuals with autism are unemployed. The same percentage of people also lives at home with relatives, creating more dependence.

Deb Russell, corporate manager for Walgreen Co., talked about the importance of hiring people with disabilities because they are loyal and productive workers. Forty percent of Walgreens' distribution center employees have some form of disability.

Randy Lewis, senior vice president of Walgreens and the father of a child with autism, supported the idea.

Russell said employment "creates a sense of purpose and community." She said school-based training and career preparation through job-shadowing are effective. 

In a text message Russell received from an autistic employee at Walgreens, the employee said that working "helps me get over my disabilities and helps dumb people get over their fears" of disabled people.

Rep. Mike Doyle, D-Pa., introduced the Expanding the Promise for Individuals with Autism Act to help improve care for autistic individuals and improve all areas of their lives.

"Our movement is to ensure that every person with autism is to have as full of a life as possible," Doyle said.

Doyle and Sen. Robert Menendez, D-N.J., said they hope to pass the bill by the end of the year.

The bill would increase distribution of information among researchers and service providers. The National Institutes of Health will get an estimated $143 million for autism research in 2011, down from $188 million this year. The sum was higher in last two years because of stimulus money. Congress could still increase funding for next year.

With more research and better programs, young adults like Joey Rosenbloom can become independent and continue to create emergency food packs called "Joe-Packs" for students who live below the poverty level.

"What would make life easier would to understand how our brain wiring holds us locked in like stroke victims, looking greatly impaired," Joey said with his device. "Once all understand our untapped potential, the rest is finding programs that give us training ... we have the same dreams you do."

Employment statistics about those with and without autism:

Individuals over age 16 engaged in paid employment, as reported by a parent:
Autistic 22 percent
Non-autistic: 75 percent
Has not looked for employment:
Autistic: 59 percent
Non-autistic: 12 percent
Looking but not able to find paid employment:
Autistic: 19 percent
Non-autistic: 13 percent
In the future will be able to work for pay if he/she wants or needs to (parents of children of all ages)
Autistic: 16 percent
Non-autistic: 66 percent
(Source: Easter Seals)

Source: Scripps Howard Foundation Wire