The Power of Parents

Families of autistic children, frustrated by a lack of services for their kids, create charities to help others

Sharon and Ron Oberleitner didn’t set out to start a new autism charity.

But when the Oberleitners — whose 12-year-old

son has the neurological disorder — told autism groups about their ideas for using video and Internet technology to improve medical services for people with autism, they came away frustrated.

Officials of the groups the couple approached told them that they didn’t feel comfortable with technology or that it was not a part of what they wanted to do, says Ms. Oberleitner, who went on to found Princeton Autism Technology, in New Jersey. “We didn’t want to recreate the wheel.”

Princeton Autism Technology is not alone in

its efforts to bring information and services to people with autism and their families. According to a Chronicle analysis of Internal Revenue Service data, the number of autism groups is growing substantially. From 1999 to 2003 the number of charities registered with the IRS that deal with autism increased more than fourfold, up from 26 in 1999 to 119 in 2003.

The new organizations tackle autism from many angles. Some help parents navigate the choices — and hurdles — they face in getting services for their children. Others raise money for research on the cause of and treatments for autism. Many new groups provide intensive behavioral therapy and one-on-one instruction for children, while a smaller number focus on the issues facing adults who have autism.

Not All Needs Fulfilled

Experts on autism say the array of organizations now at work is a welcome change from the lack of options available as recently as a decade ago. But some worry that the groups are not collaborating as much as they should, and that some organizations may be duplicating another’s work, while other needs go unmet.

Autism is a complex developmental disorder that affects a person’s ability to communicate and interact with others. The term autism includes a range of disorders. Different people with the same diagnosis often have different combinations of symptoms at different levels of severity. No one knows what causes autism, or exactly how many people in the United States have the disorder.

What scientists do know is that the number of children diagnosed with autism has risen in recent years. A 1996 study conducted by the Centers for Disease Control found that 1 in 294 children ages 3 through 10 in the metropolitan Atlanta area had at least one autism-related disorder. It remains unclear, however, how much of the increase is due to greater awareness of autism and doctors’ improved ability to identify the disorder versus an actual rise in the prevalence of autism.

The rise in the number of autism diagnoses is driving the increase in the number of organizations focused on the disorder, says Peter Bell, executive director of Cure Autism Now, a national research organization in Los Angeles.

“You have a lot of people — and many of them are parents — who realize there’s a need out there,” says Mr. Bell, “and so they decide that where there’s a need they want to fill it.”

A New Field

With the exception of the Autism Society of America, in Bethesda, Md., which is celebrating its 40th anniversary this year, the leading national autism organizations are themselves relatively new. The National Alliance for Autism Research, in Princeton, N.J., which has raised more than $21-million for biomedical research, was founded in 1994, and Cure Autism Now, which has raised more than $20-million for research, was founded the next year. All three organizations continue to add local chapters.

The great majority of autism organizations, whether they are established national groups or tiny, volunteer-run information-and-referral services, were founded by the parents of autistic children, often out of frustration at the dearth of resources available to them.

When the Autism Alliance of MetroWest, in Natick, Mass., got its start as an informal group of families 11 years ago, information was hard to come by, says Nannette Ohman, one of the charity’s founders and now its executive director.

“At the time, if you went to the library, there was one book on the shelves, and it was blaming mothers for autism,” she says. “There wasn’t much out there, so all your information came from other parents.”

Incorporated as a charity in 2002, the Autism Alliance of MetroWest now devotes much of its energy to educating others about the disorder. The group purchases up-to-date books and other materials about autism for the Morse Institute Library in Natick, runs support groups for parents and siblings of children with autism, and even trains emergency personnel throughout the state in how to communicate with people who have autism.

Families for Effective Autism Treatment of Louisville, in Kentucky, also grew out of a group of parents struggling to cope with the disorder.

Crystal Johnston, the organization’s president, remembers that when her son was diagnosed with autism, the doctors told her that nothing could be done, that she should just take him home and love him.

Ms. Johnston didn’t accept the doctors’ bleak prognosis, and eventually found out about applied behavioral analysis, an intensive teaching technique that she credits with teaching her son, who was 6 when he started the therapy, to follow directions, like “stop” or “wait,” as well as to talk and eventually to read.

In 1997, Ms. Johnston and a group of five other families started Families for Effective Autism Treatment of Louisville as a way to exchange information about the challenges of doing behavioral therapy at home.

The organization received its tax-exempt status in 2001, and in November 2003 started the Endeavor Program, a behavioral-therapy program in a classroom setting for children ages 2 to 10.

Even with its formal charity status, Families for Effective Autism Treatment of Louisville continues to be an all-volunteer organization, which Ms. Johnston says isn’t easy.

She and the organization’s other leaders juggle their charity work with careers and the responsibilities of caring for children with autism. But, says Ms. Johnston, “somebody’s got to be there to pass that information along.”

Focus on the Future

While the number of charities providing services for children with autism is growing, intensive therapy and instruction are expensive, which can put them out of the reach of many families.

The Aspen Center for Autism, in Denver, provides one-on-one instruction together with physical therapy, occupational therapy, speech therapy, and other services, all of which parents in many other locations have to cobble together on their own. But the center’s comprehensive approach comes with a steep price tag. For example, the monthly fee for the preschool program is $1,900 for the half-day option and $3,800 for the full-day program.

The center has hired a part-time development director to raise money for scholarships, but as a new organization, it also has to concentrate on its own survival. In the two years before the Aspen Center got started in June 2003, two similar centers opened in the Denver metropolitan area, and each closed within 18 months.

“That’s the scary part,” says Diane Osaki, the Aspen Center’s executive director. “The biggest challenge truly is financial, in figuring out how do you make it work so that we can be here 20 years from now? And how do we make it work so that all families can be able to use the services that their kids need?”

The state of Minnesota’s decision to include autism treatment in its Medical Assistance program in 2001 allowed the Minnesota Autism Center, in Minneapolis, to turn its attention from advocacy to providing behavioral therapy.

Therapists from the center provide 40 to 50 hours of treatment per week in the homes of the 85 children it serves. More than 100 children are on the center’s waiting list for services.

Dale A. Osterman, chief executive officer of the Minnesota Autism Center, says the organization feels fortunate to be located in a state that provides support for young children with autism.

“Many states are without any funding and frankly are without any providers that do what we do,” says Mr. Osterman. “So autistic children often have to obtain services piecemeal from a variety of sources.”

‘Too Many Different Agendas’

Most people who work in the autism field hail the increase in organizations that provide autism treatment and believe even more programs are needed. But some do worry that the field as a whole is becoming too unwieldy.

“We sometimes suffer from the fact that there are too many organizations that have too many different agendas,” says Mr. Bell, of Cure Autism Now. “For a parent who has a child with a new diagnosis and is trying to figure out where to go and where a good source of information is, it can be confusing.”

Leaders of new autism organizations agree that there needs to be more cooperation, but say that practical considerations make collaboration difficult.

Mike Maloney, executive director of the Organization for Autism Research, in Arlington, Va., says that when the charity’s founders first started talking about what they could do to raise money for applied research on treatment for autism, the first question they asked themselves was, “Does the world really need another autism organization?”

The founders — six parents and one grandparent of children with autism — discussed the possibility of taking their interest and working through an existing organization, but decided that approach would take longer and be more difficult than starting a new charity, says Mr. Maloney.

He suspects that the sense of urgency that parents of children with autism feel is part of the reason many choose to start their own charity rather than work with an existing organization. “Every day where something isn’t done, in the mind of many people, is a day lost that could have been some type of treatment for the child,” says Mr. Maloney.

Help for Adults

The debate over how many autism groups are enough will probably continue for some time to come. One item, however, that few people dispute is the glaring need for services for adults with the disorder.

“No matter what services and lack of services exist for kids on the spectrum, it’s Disneyland compared to what’s out there for an adult,” says Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership, or Grasp, in New York.

People who have Asperger syndrome, which is a form of autism, have little or no impairment in their speech, but have varying degrees of difficulty with social interaction and nonverbal communication. Grasp, which was formed in 2001, serves as an information clearinghouse and runs support groups for adults with Asperger syndrome in Long Island, Manhattan, Philadelphia, and Wallingford, Conn., which are all led by facilitators who also have Asperger syndrome.

“People get a chance to voice issues that they’re having in their lives with an audience that understands this one particular part of their personality better than any other people in their lives,” says Mr. Carley, who was diagnosed with Asperger syndrome four years ago at the age of 36.

Cyndy Kleinfield-Hayes says that as her own son, who is now 14, approaches adulthood, she feels as if she’s right back where she started 12 years ago when he was first diagnosed, facing a disappointing lack of information and services.

So Ms. Kleinfield-Hayes has started Global Communities of Support, a new nonprofit group in Princeton, N.J., that seeks to create residential developments for adults with autism and their families — particularly parents who have always taken care of their autistic children and are now reaching retirement age. At the center of the neighborhoods would be group homes, a learning center, and recreational facilities for adults with autism, while along the perimeter of the development would be single-family homes that parents and other family members could purchase.

She describes the neighborhoods as a sort of retirement community for people who have children with disabilities. She says that the organization is in talks with two developers in Florida, and hopes to secure the land for its first development this year.

Ms. Kleinfield-Hayes is quick to acknowledge that her plan is ambitious and will require several million dollars to realize, but she is also confident that the demand exists for the communities that she envisions.

“If we can get out there and create a real model, the sigh of relief would be audible from parents around the world,” she says. “It is the kind of thing that keeps you up at night: ‘Oh my God, what is going to happen to my son?’”