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Fetal alcohol spectrum disorders affect about 1 in 20 people and are typically diagnosed at 4--6 years of age, around the time of school entry. These conditions, which include fetal alcohol syndrome and alcohol-related neurodevelopmental disorder, carry lifelong effects, and in many cases go undiagnosed.

, Sarah Mattson, Ä¢¹½ÊÓƵÍø professor of psychology and co-director of SDSU’s Center for Behavioral Teratology, published a web-based tool that aims to increase accessibility to screening services and help people get diagnosed more quickly. Below, Mattson answers questions about , a tool that allows people, including those in remote areas or without access to specialized facilities, to test for fetal alcohol spectrum disorders online in their own homes.

What are fetal alcohol spectrum disorders (FASD) and what are the effects?

FASD is an umbrella and includes a variety of diagnoses caused by alcohol exposure before birth. The common feature of all the diagnoses is impairment in cognition and behavior. We see challenges in learning, hyperactivity, attention problems, problems with executive functioning and problems with self-regulation. 

But there is a really big range of abilities. There are people who are profoundly affected but others lead very successful lives. Often individuals with FASD have challenges in school, difficulty paying attention and learning problems. I think that's especially compounded because of the problems with diagnosis and the lack of recognition. So if somebody is really struggling in school, but those problems aren’t detected or understood then they're just going to fall further behind. Understanding that FASD is a possible cause of these school challenges can help both with early diagnosis and proper intervention. 

Some people have physical manifestations of prenatal alcohol exposure — growth impairment, short palpebral fissures, which is a small eye opening, a long, smooth philtrum, which is the ridges that run between your nose and upper lip, a thin vermilion, which is your upper lip. But most people with FASD do not have these features, which is another part of the challenge with diagnosis.

How does BRAIN-online work?

For kids, a parent logs in and answers a few questions about their child and about their child's behavior, then turns it over to their child, who takes the cognitive tests. 

For an adult, they just sign in and do the whole thing themselves. It sends the results to us and we process the data. We provide a feedback summary and make a recommendation about whether we think the child should be seen by an FASD expert. Anyone age 5 and older with and without prenatal alcohol exposure can take BRAIN-online. If you want to take BRAIN-online, .  

How will this tool improve FASD diagnosis? 

People with FASD are often misdiagnosed. But they're more often just missed rather than misdiagnosed because, even though we've known about the teratogenic effects of alcohol for decades, it's not very commonly evaluated. There's a great deal of stigma around prenatal alcohol exposure and clinicians aren't always comfortable talking about it. 

That's one of the reasons why I think BRAIN-online is a valuable tool, because it allows some evaluation even prior to getting to the clinician's office. It will ease this diagnostic burden by allowing people to get information about their ability that they can take to a clinician. It might say, we think this child needs to be evaluated, we need to move them higher up on the list. Or, it might say, this child might be having challenges but we don't think it's related to FASD. At that point, their pediatrician could pursue other alternatives. I think that's equally as important.

How can this tool be used?

Parents could enroll their child to take BRAIN-online, and then take the information they get from the test to a provider. It also could be used in a clinical setting. If somebody contacts a neuropsychologist or pediatrician for FASD evaluation, and they're told the waitlist is really long, they could start taking BRAIN-online while they're waiting. That could help the clinician streamline their waitlist and it gives them a preview of how the person might be functioning. 

It's not designed to replace in-person neuropsychological assessment, but to really help streamline and guide the diagnostic process.

How did you recruit participants to test the screening tool in this study? 

FASD experts at Rady Children’s Hospital and UCSD refer patients to us. They do the physical measurements and we do the cognitive and behavioral neuropsychological assessments the diagnosis requires. We also get a lot of participants from the community.  If you are interested in participating, you can

How does this tool fit in with others you have developed?

We developed another screening tool called the FASD-tree, primarily for clinicians to use for children. It puts parent questionnaire and physical measurement data together and comes up with a prediction about whether we think the child perhaps has an FASD. It doesn't have any measures of cognition, so that's where BRAIN-online fits in.

What are the next steps?

We are continuing to test the accuracy and validity of BRAIN-online. For example, we are interested in comparing the performance of people with FASD with those with ADHD because there is a lot of overlap in the symptoms of these two important developmental conditions. We also translated BRAIN-online into Spanish, and are excited to try it out in children who speak Spanish. We feel that this will be an important next step, especially in our San Diego community. And we're definitely thinking about rolling this out into the clinical world. Our goal is to make screening for FASD part of everyday health care. 

Mattson's research was funded in part by grants from the National Institute on Alcohol Abuse and Alcoholism (NIAAA), part of the U.S. National Institutes of Health.