FORTUNE — New York is a hot spot for autism causes. The biggest names in research and fundraising are here: hedge fund manager Jim Simons and his influential Simons Foundation, for instance, and former NBC Universal CEO Bob Wright’s multi-million dollar Autism Speaks awareness campaign.
But for all the funds flowing through New York and the outsized attention paid to the disorder that now affects 1 out of 70 boys and 1 in 110 children, families with autistic kids here face the same manifold problems as any other across the country. One common refrain is, How can I get help for my 1-year-old tomorrow instead of waiting weeks or months for the bureaucratic paperwork? And as the children grow older, parents are increasingly asking, Who’s going to help my autistic son after he graduates from high school and I’m gone?
Two women are tackling the issues with an innovative idea, and borrowing a page from financial types to do it – Laura Slatkin and Ilene Lainer are autism’s venture capitalists.
Slatkin runs an upscale candle company after having quit a job on Wall Street to build a fragrance company with her husband Harry Slatkin, dubbed by the New York Times as the “king” of home fragrance. Their 12-year-old son David is severely autistic. He doesn’t talk and almost completely lacks communication skills. The Slatkins travel to Boston to see him at the New England Center for Children, a school for autism treatment. “I’m thinking about when David gets older,” she says, “and I really don’t know what’s going to happen.”
Lainer is a former labor employment lawyer in Manhattan whose 14-year-old autistic son Ari travels 40-minutes on bus every day to a specialty school in Queens. Lainer runs the day-to-day operations of the New York Center for Autism (NYCA), a nonprofit the women co-founded in 2003 that has raised more than $20 million. Slatkin and Lainer opened New York’s first charter school for autistic children in 2005, and later NYCA created innovative courses at a local university to instruct teachers and nurses, for instance, how to work with autistic people in their fields.
Like Silicon Valley’s VCs, they seeded these programs then let others take them over to grow. Unlike venture capitalists, however, they’re not in it for the money – the only reward they seek is more help for the autistic population.
What could be their crowning achievement is still in its early stages. For years Slatkin and Lainer have wanted to open a hub for autistic people of all ages, a center where young kids could be diagnosed early, teenagers could learn job skills, and autistic adults could secure jobs. This kind of comprehensive center doesn’t exist elsewhere in the country.
The Institute for Brain Development is set to open in late 2012. Again, Slatkin and Lainer have teamed with experts. New York-Presbyterian Hospital and the medical schools of Cornell and Columbia Universities school are helping NYCA open the center in White Plains, New York, located about an hour north of New York City. Simons, who founded the hedge fund firm Renaissance Technologies, and his wife Marilyn donated $5 million to get it off the ground. Autism Speaks added another $1 million.
The women recruited leading autism clinitian Dr. Catherine Lord from the University of Michigan. Lord says the center will offer “gap services” such as therapy sessions between the time a child is diagnosed as autistic and the time parents find the appropriate therapists — a heartbreaking, stressful time for parents. “You know the clock is ticking,” says Slatkin, “and every day you aren’t engaging your child in therapy makes you think it’s an opportunity you lose.”
Later, Slatkin and Lainer expect the institute to cater to all ages of people with autism. The hospital system created 10 internships for autistic teenagers and adults. Shopping malls and businesses around White Plains can provide more jobs. There are plans for housing options around the campus (transportation costs are one of the biggest obstacles to employing autistic people). They envision a hub for the autistic community — and they hope the idea can be scaled nationally.
“We want to be leaders,” says Lainer. “In time it should be easier for others to do this.”
The Slatkins and Lainer’s family are desperate for options for their sons once they grow up. What happens when parent die is an increasingly important question: more than 80% of autistic people in the U.S. are estimated to be younger than 22 years old.
Lainer draws an analogy to the disability rights movement of the 1980s and 1990s. “When people in wheelchairs couldn’t get into the building, they made curb cuts,” she says. “You couldn’t push the elevator button because it was too high? They lowered the button. We need to figure out what the curb cuts are for people with autism because they deserve as much to be members of the community as people in a wheelchair.”
