Creating something new for young adults with autism:

After the school bus stops coming

By Dan E. Burns

On May 28, 2009, almost two decades after his diagnosis, Ben carried his backpack onto the school bus
for the last time. He was about to graduate. And for the thousandth time, I recalled his pediatric
neurologist’s advice: “Let the school take care of him until he ages out, and save your money for his
institutionalization.”

Where will your adult child with autism live, learn, work, play, heal, and find friends after the school bus
stops coming?

I chaired a panel to address that issue, the AutismOne Adult Issues Panel, in Chicago last May. Robert
Krakow, Esq., whose son was diagnosed with a developmental disorder, was in the audience. From 2002
through 2009, he served as Chairman of the Board for Lifespire, New York based organization been
dedicated to improving the lives of 6,000 individuals with developmental disabilities through homes,
residences, apartments, aid programs, and supported work. I asked Krakow what lessons had he learned
about helping to build and govern such an organization, and how those lessons might apply to the new
wave of adults with autism who are aging out of the school system.

“There are five risks and an opportunity,” said Krakow. “Let’s look at the risks”

1. Institutional inertia. “Adult children with autism present very different challenges than most of
the individuals who have been served by the legacy organizations, such as United Cerebral Palsy,
the ARCs, the epilepsy and Down Syndrome organizations,” Krakow said. “New challenges
require new responses. Today we have a new challenge: the exponential growth of autism.
When you are dealing with individuals who, like my son, are vaccine injured or injured by other
toxins, your strategy should include medical interventions. Some legacy organizations don’t
want to provide biomedical therapies and treatments because they can’t,” he said. “And
sometimes they are proactively hostile toward them.”

2. Tyranny of the managerial class. “Today,” said Krakow, “organizations like Lifespire are managed
by a professional class that has grown up with the industry and that develops, in some cases, a
self-serving culture. I say that, acknowledging that there are many, many committed and
talented professionals who work in these organizations. Others, however, are primarily
interested in advancing their own careers and increasing their salaries.”

3. Excessive dependence on government funding. “No major organization can afford to can go it
alone,” said Krakow. “We need to continue to advocate for government assistance. But an
organization solely dependent on government funding tends to become an extension of
government, driven by Medicaid guidelines. It becomes mired in its own bureaucracy. With that
comes a loss of the sense of mission, of why you are there. You lose the passion that created the
organization.”

4. Exclusive focus on the bottom line. “Many times,” said Krakow, “I’ve heard my directors say, ‘We
have to run our organization like a business.’ In some respects they’re right. You must be
financially rigorous. You must protect your funding. But if you develop a business culture, an

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 exclusive focus on the bottom line, your mission suffers. Because ultimately, improving the lives
of developmentally disabled individuals is not a business. It’s a mission.”

5. Financial failure. “Sometimes parents are so focused on the mission,” Krakow warned, “that
they neglect the bottom line. If the institution fails financially, the mission fails as well. That may
be the biggest risk of all.”

“So how do you create an effective, sustainable mission-driven organization?” I asked Krakow. “How do
you govern it?”

“It’s tough,” he said, “but here comes the opportunity. I believe that the best support for our children,
including our adult children with autism, will be generated through groups that are created and
governed by parents. They will have to draw on the expertise of professionals, because you need a
balance. But parents have to have a level of control sufficient to ensure that their children’s care doesn’t
become an extension of government or just another business. You need the government. You need the
professional managers. You need a healthy bottom line. But you also need the passion of parents. You
need their vision.”

“What is the vision?” I persisted.

“We need to create living situations that are not isolated pariah houses,” he replied, “but true
communities. We want our kids and adult children with autism to in a setting where they are active and
productive, psychologically and emotionally supported, where they interact and learn, where they enjoy
recreation and entertainment.”

“How do you do that?” I asked.

“I don’t know,” he answered. “I profoundly don’t know. Do you envision clusters of residences? A rural
agricultural environment where kids and young adults plant, grow, harvest and sell their produce? A
campus with a diverse population? If your vision is a campus, how do you integrate that with a larger
community?”

“One thing I do know,” he continued, “is that the answers will come from parents like Polly Tommey,
James Adams, and many others.”

“How do you see that happening?” I asked.

“As these kids become adults and age out of the school system,” said Krakow, “they will create an
autism wave. We are already on the leading edge of that wave – a 400 percent increase in the autism
incidence in Texas, for example, during the past ten years. It’s an impending crisis.”

“But it’s also an opportunity,” he continued, “to create new conceptual structures that take advantage
of economies of scale. Most kids diagnosed with autism come from affluent, well-educated households
or from families who are profoundly motivated, who will do whatever is necessary for their kids even if
their material resources are limited. It’s up to them – to us – to solve this problem. We must learn from
the past, not repeat it. We have an opportunity to start fresh. That’s my hope for The Autism Trust. It’s a
tremendous opportunity to create something exciting, something new.”

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Dan E. Burns, Ph.D., is Adult Issues Liaison for AutismOne and the author of Saving
Ben: A Father’s Story of Autism. Get the full story HERE. Burns is developing the Autism
Trust of Texas, modeled on The Autism Trust (U.K.) and focused on the creation of new
campus communities where adults with autism can work, live and improve their skills
and talents in a creative and supportive environment.