Autism diagnoses among children of Latino descent have risen more than 90 percent since 2002, according to a Centers for Disease Control and Prevention study released in December 2009.
While the reasons for this are multifaceted, Dr. Charles Cartwright, Director of the YAI Autism Center, identifies several factors that have contributed to this startling increase.
“There is now a broader definition of autism spectrum disorders, which results in more children getting the diagnosis,” Dr. Cartwright said. “Parents are also becoming more aware of the signs and asking more questions when going to the doctor and parents are more motivated to receive the diagnosis, which leads to greater access of services.”
“Some of the increases are due to better detection, particularly among children who may not have come to attention in the past,” said the CDC’s Catherine Rice, who led the study, in the press conference announcing the results.
While it is clear that there has been a significant increase in diagnoses among Latino/a children, the study does not confront the fact that many of these youngsters are falling through the cracks because of language and other barriers.
Dr. Fabricio Balcazar, Professor in the Department of Disability and Human Development at the University of Illinois at Chicago and Director of the Center for Capacity Building on Minorities with Disabilities, addressed this issue when he presented to families and professionals at a free Latino Health Care Conference, sponsored by the YAI Network and the Center for Latin American, Caribbean and Latino Studies at the City University of New York.
“Parents of children with autism and other developmental disabilities who are Latinos are lagging behind most other groups,” Dr. Balcazar said. “In terms of the need for addressing their issues, concerns and anxieties about the futures, these efforts are enormously valuable to them.”
“I Was My Son’s Doctor”
Sandra Lugo, a guidance counselor at a high school in Brooklyn and former teacher, has a 3-year-old child with autism. When she realized that her son needed help, she took action right away.
“I was my son’s doctor. He was frequently falling and that wasn’t normal. He seemed not to hear me when I called his name and by the age of two, he was only talking in one or two word sentences and not interested in being around other children,” Sandra recalled. “These were all eye openers, and I knew deep in my gut that my son needed help and I needed to act fast. I wasn’t prepared for the diagnosis. When he was evaluated, I was devastated and cried out of sadness, but I also cried out of relief because he was going to get the help he needed.”
Sandra’s son now attends a YAI Network preschool and has made great progress. The Lugos are fortunate, because they are bilingual and familiar with the education system in New York.
However, many Latino families only have family members who speak Spanish, so it’s much more difficult to communicate their concerns about their child and learn how to access the proper services.
Mara Henriquez, Supervisor of Community Targeted Outreach at the YAI Network, says that Latino/a parents face unique barriers to finding services, including cultural and language differences.
“When Spanish-speaking families don’t know that services exist or where to go for help, a sense of isolation creeps in,” Mara said. “They may even think that they are the only family who has a child with a disability.”
It doesn’t help that the most available and comprehensive information is solely in English and includes terms that families may be unfamiliar with, even if they are bilingual.
“If doctors and other professionals don’t speak Spanish, it can take families a long time to build trust,” Mara said. “Everyone wants to feel as if their doctors are listening to them and truly care, and that can be difficult if there is a language barrier.”
After the Diagnosis
Terese Sanabria, Bilingual Social Worker, and Erica Pitman, Social Worker, at the YAI Network’s Gramercy School, recommend that families take the following steps to access services:
- Seek out education on what a possible diagnosis of autism might mean. One website to check is http://espanol.ninds.nih.gov/trastornos/autismo.htm
- Speak to your pediatrician – ask questions!
- If you do not have a pediatrician, go to a larger medical center or teaching hospital where they are more likely to have bilingual specialists available.
- Advocate for your child to see a specialist — a developmental pediatrician or a child neurologist is a good place to start.
- Pursue an Early Intervention evaluation by calling an Early Intervention provider agency in order to assess if you child needs services (or a CPSE evaluation if your child is turning 3 or older).
- If you do not obtain services based upon the evaluation you receive, revisit the issue in six months for a possible re-evaluation.
- Most importantly, trust your instincts and follow them. If you believe there is something not right with your child, pursue additional opinions.
Forming a Community
As a demonstration of the YAI Network’s commitment to serving the needs of diverse communities, the Latino Health Care Conference brought together more than 300 Spanish-speaking families for a day of support and empowerment, helping to alleviate isolation and lack of information, as well as to break down some of the cultural barriers.
“This conference brings together families from throughout the Latino community to provide them with information and supports that will help their loved ones with disabilities enjoy the highest quality of life,” said Stephen E. Freeman, Chief Operating Officer of the YAI Network.
“Seeing is believing,” said Sandra Lugo, who spoke at the conference. “You can’t ignore what is there. You have to take a stand and act on getting the necessary services!”
“We as parents have to stop placing limits on ourselves and our children and fight for services,” said Luz Barrales, a conference attendee who has a son on the autism spectrum. “We can’t wait for people to fight for us. We have to help our children be independent and find the best services for them.”
Marco Damiani is Senior Director of Clinical and Family Services at YAI/National Institute for People with Disabilities. For more information on services available to Spanish-speaking families who have a child with autism, please contact YAI LINK at 1-866-2-YAI-LINK.