Autism in an age of austerity

Ellen Cooperperson is chief executive of Corporate Performance Consultants, a Hauppauge-based firm specializing in organizational and leadership development.

Over the past eight years, autism has become a central part of my life.

Samuel and Ethan, my grandsons, were diagnosed with an autism spectrum disorder, one of a group of developmental disabilities that affect a person's ability to communicate, form relationships and respond appropriately to their environment. Perhaps the simplest way to understand the effect autism has on a family is to picture other children trying to play with your grandsons and saying to their mother, "Why won't they play with me? How come they don't talk?" It's devastating. Heartbreaking.

Ours is one of more than a million American families who are dealing with these disorders and their related diseases. The children need our help. Without it, we fear their lives will be spent in isolation from the people who desperately love them, as they are unable to express their wants and needs, their joys and sorrows. We're not just their grandparents and parents; we've become their advocates as well.

Today, one in every 100 children is diagnosed with an autism spectrum disorder, according to the Centers for Disease Control and Prevention. Most researchers agree that autism is a serious and fast-growing developmental disability. Some observers question whether the dramatic increase in cases is due to better diagnosis efforts and a broader classification of such disorders over the years.

Those like me believe that environmental conditions also impact autism incidence. In one study, for example, researchers at the University of California Davis MIND Institute found a seven- to eightfold increase in the number of children born in California with autism between the early 1990s and 2007 - and that increase could not be explained solely by changes in diagnoses or classification practices. Still, autism is "a new epidemic, so we don't have great statistics to rely on," says Wendy Fournier, president of the nonprofit advocacy group the National Autism Association.

Much remains unknown about the causes of these disorders. Many researchers believe that they result from a combination of causes, including environmental, biological and genetic factors. Some believe this epidemic is related to children's vaccines - a question that Fournier believes will "go on for years."

Autism affects people in different ways, ranging from mild to very severe. Currently, there are no cures; appropriate intervention is the only treatment. So much needs to be learned about autism, not only by the medical community, but also by parents and families. Research is crucial, as are special educational programs, therapeutic and caregiver services.

But in the charged political atmosphere of Albany and Washington, the prevailing theme these days is about cutting government spending - everywhere we can.

Already, the New York State Board of Regents last fall softened some mandates for special education programs, including those for students with autism, in an effort to help schools trim costs. Over the protests of many parents and therapists, officials allowed districts to raise class sizes and reduce therapy for thousands of students with disabilities. Gov. Andrew M. Cuomo's proposed budget for fiscal 2012 would trim aid to school districts by $346 million to $19.5 billon - which doesn't bode well for special education programs and treatments. And in Washington, the House recently approved major cuts to disability programs, although it's unclear how these changes would directly affect autism treatments.

I've been a business consultant for more than 30 years, and I know how important it is to maintain fiscal responsibility and control spending - in both the private and public sectors. Still, such budget-cutting may be shortsighted. Even in the toughest economic times, the most well thought-out strategic plan will fail if you don't invest in human capital - in business, the training and support of your employees; for government, the protection and future prosperity of your citizens.

Yes, we need to put the state's and the nation's financial houses in order, but we also need to take a broader, more comprehensive look at the long-term impact of slashing programs. Treating autism and searching for potential cures are not easy or inexpensive, but there are grave consequences for not doing it.

Autism spectrum disorders are a serious problem for businesses as well as for families. Autism not only prevents children from reaching their potential as productive workers, but it affects the productivity of employees who have children with autism. It also creates a significant financial burden on families, as well as society overall. According to a 2006 Harvard School of Public Health Study, the direct and indirect costs of caring for an individual with autism total $3.2 million over that person's lifetime.

That puts enormous stress on these families. The disorder affects their work days as well as their personal lives. To compete in a global economy, we need a well-trained, productive workforce. But if we continue to cut programs that build human capital - including our families - we will end up putting today's employers as well as the next generation's workforce at risk. Early diagnosis and intervention can greatly reduce lifelong care needs, not only helping our children function better as they grow up, but increasing their prospects for eventually entering the workforce as well.

In business, if you want to fix a complicated problem, you need a disciplined plan. And, we need such a plan to make the most effective choices in confronting autism spectrum disorders, including medical research, special education, therapeutic services and health insurance coverage. Many advocacy groups are lobbying Congress to reauthorize the 2006 Combating Autism Act, which provided more than $1 billion in funding for research and treatments over five years. We require a sustained effort, with close scrutiny on which approaches lead to successful outcomes.

We should also look for ways businesses can contribute to this plan. For example, at California-based Cisco Systems, employees who have any family member diagnosed with autism are eligible for treatments, with a $90,000 lifetime cap, through the company's health care plan. More companies should follow suit.

As politicians scramble to find ways to boost the economy, we hear the constant call for "jobs, jobs, jobs." But are we taking the right steps to maximize our greater human resources by addressing issues like autism. Ultimately, we need to strengthen our workforce and our families - together.

When my grandsons began intensive therapy programs a few years ago, neither one could speak, respond to his name or to the environment around them. Even though they're still unable to figure out where they belong in the world, they are now able to show excitement when they're around other children. And when we call out, "Samuel" or "Ethan," they look up, and most of the time, give us a beautiful smile. They now can say, "I love you." That's what I call return on investment.