Marina Sarris

Date Published: March 4, 2026

As the largest study of autism, SPARK gets questions, lots of them. People want to know everything from “what do you study?” and “who can join?” to “what’s happening with the saliva sample I sent you for DNA analysis?”

Since the study began in 2016, SPARK’s help desk has answered about 100,000 requests for help or information about many topics. The help desk currently responds to about 1,100 emails, live chats, and phone calls a month.

Most questions come from the more than 415,000 SPARK participants across the United States. People with a professional diagnosis of autism, and their parents, are eligible to join.

Like other help desks, SPARK’s team works to solve problems. “In many ways, a lot of our job is being a detective and solving mysteries and issues,” explains help desk supervisor Esmeralda Perez, SPARK senior program coordinator.

But this is no typical help desk. Perez and two staff members receive special training on research laws and ethics. They make sure they protect the privacy of every research participant who contacts them. Her team can also reach out to the study’s science experts for complex questions about genetics.

“Whenever a participant reaches out to us, we learn a little bit more about how we can improve the SPARK experience for all families,” says SPARK project director Amy Daniels, Ph.D.

According to Perez, the most frequent questions to the help desk fall into three categories.

How can I update my SPARK account?

The help desk can change your name, email address, and phone number on your account for you. It can also guide parents through the process of adding a new autism diagnosis of another child. If you just want to change your mailing address, or switch between two phone numbers you still use, you can do that yourself, if you’d prefer. Just log into your account dashboard at www.sparkforautism.org. Trouble logging in? The help desk can help with that, too.

Can SPARK send me a new saliva collection kit?

Many people want to submit a saliva sample for genetic analysis by SPARK researchers, who are looking for genes that contribute to autism. But sometimes, participants’ saliva collection kits get lost or damaged, or expire before a family is ready to use them. Contact the help desk to get a new one, Perez says. Don’t worry about the reason. The help desk has heard about all kinds of mishaps, even dogs who destroyed kits.

But her team does not stop there. “We like to include next steps and tips for collection. We found that it helps to provide demonstration videos and to make sure participants understand that they shouldn’t eat, drink, smoke, or chew gum at least 30 minutes before the collection,” Perez says.

What’s the status of my saliva sample? What is SPARK learning from analyzing people’s DNA?

Help desk staff can tell you if the lab has received and accepted your saliva sample for processing.

Staff will even track down missing kits. Once a parent contacted SPARK to get an update on a saliva sample that they had submitted for their child. But the kit’s whereabouts weren’t immediately obvious to the help desk staff. After some detective work, and consulting a different database, staff discovered that the parent had accidentally removed the child from the family account without realizing it, Perez says.

SPARK fixed the problem, so the child’s sample could move forward for analysis.

For general questions about autism genetics, the help desk frequently refers people to a video by SPARK scientist Jessica Wright, Ph.D.: “What SPARK is Learning from Returning Genetic Results to Participants with Autism.”

The help desk aims to respond to requests within two business days. Bilingual staff can also answer questions in Spanish.

Most questions come from people registered with SPARK. Some emails come from people who are not participants, including healthcare providers who are interested in learning more, Perez says.

The help desk can provide resources for general autism questions. SPARK’s website, for example, contains FAQs about the study, a video library of presentations by researchers and doctors, and scores of articles about autism and research.

But the help desk cannot refer people to doctors. “We are not able to provide recommendations for providers or genetic counselors,” Perez explains.

Problem with your account? Send a screenshot

If you’re emailing, Perez recommends attaching a screenshot. “One thing we love is when participants send us screenshots because that gives us the error message they’re getting and shows us the exact page they are on,” she says.

She recalls helping a participant who received a gift card for completing a SPARK survey. The participant couldn’t get the gift card to work, even after contacting the company that issued it. Fortunately, they sent the help desk a screenshot of their attempt to use the card. Perez studied the image and realized the participant had accidentally landed on the card’s website in the United Kingdom, not the U.S. Problem solved.

The help desk keeps track of common problems experienced by participants and even staff, Perez says. This has led to added features on her team’s systems, as well as a better understanding of the problems participants might face with their accounts.

The help desk also attends meetings about many aspects of the study. It stays up to date on changes involving saliva collection kits, genetic analyses, social media campaigns, and study news, for example. “That way we can provide participants, or anyone who reaches out to us, with a really seamless experience, which is what we’re aiming for,” Perez says.

Contact SPARK by email, mail, or phone.

Photo credit: iStock

Interested in joining SPARK? Here’s what you should know.