When sugar means sugar and when you know a language

If you think you speak a language, and you weren't born speaking it, you *don't* really know it.

That was my experience writing about a couple of complicated issues in Santa Cruz County for my California Endowment Health Reporting Fellowship. For those that aren't familiar, the county is practically divided in half by technology and agriculture, English and Spanish, wealth and poverty. The computer you are reading this on has hardware and software developed by people who live in the northern part of the county and commute to Silicon Valley. The strawberries you're eating while you read this likely come from the miles of strawberry farms in the southern part of the county. In Watsonville, more people speak Spanish than English, more children are on school lunch programs and more people live in poverty than in Santa Cruz, all in a county that is a sliver of beauty between mountains and Pacific Ocean.

Having transitioned to education reporting after receiving this fellowship, I looked for stories that combined education and health. As with poverty all over the U.S., income tracks with health access, and language barriers track with poor compliance and outcomes. I decided to look at two aspects of health not always covered when talking about disparity - autism and dental health in children.

I speak a little Spanish - nothing fancy, but in reporting other subjects in South Santa Cruz County, I always got by. Writing about dentistry was fun and relatively easy - families at school-run dental clinics were more than happy to chat, kids willing to smile and dentists willing to talk about what they believe is an epidemic of dental trouble in South Santa Cruz County.

But the thing I take from this story is that in my limited Spanish, I learned what the word "sugar" really means. The parents I talked to always said no when I asked if the kids ate lots of azucar - the literal word for sugar. In English, through nutritional and public health messaging, we've become more accustomed to thinking about sugar not just as the granulated stuff that goes in coffee, but as an ingredient in food, and an abstract descriptor of a cause of dental disease.

I was curious - what was going on in Watsonville that kids not eating much sugar were walking around with so many cavities? So I asked one mom, what does your kid eat every day? Juice, candy, cereal, and the list went on. So, no, these kids weren't eating much granulated sugar, but their intake of sugary foods was really high. Parents were answering the question honestly, but I was asking the wrong question. So the lesson I've learned is how important it is to understand what the actual public health or nutritional words are for that subject in that language, so I can use the right words to get the best answers.

In realizing how complicated autism is in English, I expected some trouble understanding the subjects of my story, and searched for a while to find help with translating. This is where nuance is so important. I couldn't rely on a cousin, or a English-speaking family member to tell me what was going on in the house - they couldn't objectively portray what sadness, frustration, anger and sometimes shame I could hear in the voices of the parents I tried to talk to. Plus, unless those family members really understood the diagnosis and the various treatment modalities, they didn't always have an English word handy to accurately describe what the relative was saying.

Through another story, I was lucky to find some folks in social services who weren't associated with my subjects' healthcare directly. They were willing to talk with me and the families in a setting that was comfortable to them. This was crucial - some of these families felt they couldn't leave the house with their autistic child because their behaviors were disruptive, or drew so much attention. It took time, and a lot of flexibility on my part to get this done.

The story took months to develop, in part because of my daily responsibilities at the paper. As the ball got rolling, my editor was a saint in giving me whole days to find data on Latinos and autism (not much!), find experts in autism in different ethnicities (just a couple!) and then scour our county for the professionals and paraprofessionals (so very few!) that can and do help diagnose and treat an illness so mysterious.

Then I had to find families for a story about hidden families. English-speaking parents of autistic children and special education teachers were wary of helping, but they understood the awareness aspect of why I was writing the story, and they appreciated that the stigma of autism is so much less in English-speaking America than it is in Spanish-speaking America. By letting them make the first connection with the parents, and explain what I was doing, I was able to meet and speak with a huge array of Spanish-speaking families with autistic children of all ages, some of whom lived near each other, but because of isolation, didn't know it.

It's hard to know what lasting impact the story will have, other than to alert and remind county and state officials that Spanish-language resources for autism and support structures for families may not be enough. But in a state that does a crazy budget dance every year, with politicians that overlook data that the number of children in California schools with Spanish-speaking parents is now more than English, and the legacy of autism in California being tied to educational resources rather than health resources, perhaps the best impact of the story will be the seed that allows a community of Spanish-speaking families dealing with autism to develop in Watsonville and South County, outside isolation and outside shame.