April 2, 2009 -- When Santa Reyes' son, Yoleheri, was diagnosed with autism at age 3, the Lawrence, Mass., woman, who speaks little English, had no idea where to turn for help for her autistic son.
"I was very worried, because I could see that my child was not like the rest of the children," said Reyes, who also has a 22-month-old son who is not autistic.
When she began to pursue answers, she discovered her son was not receiving appropriate services, such as speech therapy.
On this World Autism Awareness Day, it may be worth noting Reyes' experience is not unique. It is true of many families with limited resources who are dealing with an autistic offspring.
Autism's toll isn't merely calculated in the difficulty it takes to communicate or learn; the complex neurobiological disorder also adds up quickly in dollars and cents.
"The financial toll it takes on a family is horrible because you can spend up to $40,000 and $50,000 a year for therapies for your children," said Bob Wright of Autism Speaks.
Moreover, it typically costs $3.2 million to raise an autistic child into adulthood, according to a Harvard School of Public Health study published in the Archives of Pediatrics and Adolescent Medicine in the spring of 2007.
"If you are African American, Hispanic, or your first language is not English, than you're highly likely to be diagnosed in kindergarten or first grade, not having had early diagnosis," said Wright, a former General Electric executive. "And then, in that situation, you've missed out on all the earlier interventions."
Wright and his wife, Suzanne, founded Autism Speaks, one of the country's leading autism advocacy groups, after their grandson, Christian, was diagnosed with autism at 2½.
Wright, whose now-7-year-old grandson has shown some improvement from programs, said it's imperative to break the cultural barrier in order to funnel more resources to autistic children at an earlier age.
Reyes learned how powerful such resources can be. After just one year, she has seen dramatic improvement in her son. He now reads and writes in both English and Spanish and is even doing math.
"Here's a perfect illustration of a child who's lined up those services, is now accessing them and is making extraordinary progress," said Boston-area resident Ann Guay, who is a policy analyst for Mass Advocates for Children, an organization that supports lower-income families like Reyes'.
"And he's just one child," Guay said. "So we have to figure out a way so that other families can do it as well."
Guay, 46, while working at Mass Advocates for Children, increased awareness using what she learned while caring for her own autistic son, Brian, who was diagnosed with the condition at age 3.
"I figured out that the best way to help my son was to get busy and figure out what services he needed, and use my resources as an attorney to try and make sure that happened," she said.
Guay was fortunate. She had the financial security to quit her job to care for Brian, the second of her three children, and the means to get him additional services in school.
"Children with autism can make incredible progress if they have access to intensive services early on. The difficulty is accessing them and finding them," said the mother of three whose middle child is the only one with autism.
"Many of our clients have linguistic and cultural barriers," Guay said. "They need to sort of navigate the system where they don't always speak English."