App aims to end isolation and educate parents whose children have fetal alcohol disorders
Each year in the U.S., thousands of children are born with life-long disabilities because they were exposed to alcohol before they were born.
Between 2 and 5 percent of the U.S. population is diagnosed with fetal alcohol spectrum disorders, or FASD.
"That is a very large number of people," said Christie Petrenko, a research psychologist. "It's pretty comparable to the rates of autism, or maybe even a tad higher, and much higher than things like Down Syndrome."
Petrenko, is a lead principal investigator of a team at Mt. Hope Family Center developing a mobile app to help families whose children have this diagnosis; it's called Families Moving Forward Connect. They're hoping it fills a critical gap in services.
Petrenko says many parents feel isolated because there aren't enough providers to diagnose and treat their children's conditions. There are only two practitioners with this specialty in all of New York State.
One component of the app educates parents about FASD.
The conditions range from characteristic facial features to delays in growth, brain abnormalities, learning, behavioral, and social problems, and mental health issues.
Many of the behaviors associated with FASD can look like willfulness. Parents may think their child is misbehaving on purpose. The behavioral symptoms also resemble those associated with autism and ADHD.
"For example, one of the biggest challenges that kids with FASD have is with this idea called executive functioning," said Petrenko. "It can be remembering multi-step instructions, problem solving, controlling impulses, being able to start tasks and see them through. Those types of problems can affect in so many ways."
Common parenting strategies like taking things away, time out, or even praise and reinforcement don't work as well as they do with typically developing kids, so the app walks parents and caretakers through alternatives.
Petrenko says taking steps to prevent certain behaviors tend to work better.
"If we know some of the triggers," she explained, "things like asking the child to do a task that is above their ability, or if the environment is too loud...being able to change the environment, helping them break things down, make things simpler, make things calmer, they often function much better and then don't have the behavior problems to start with."
The app also features a social forum linking families so they can support each other and share ideas.
"Not only do you have the isolation that many families raising kids with disabilities experience about not feeling they can go out into all the public spaces without being judged," said Petrenko, "but you also have the added layer of stigma of having an FASD and the relation to substance use disorders is problematic for many families, and there's no supports, so they don't have providers than can easily go to."
Right now, researchers are testing how effective the app is before it's made available in the app stores.
Monday, September 9 is Fetal Alcohol Spectrum Disorders Awareness Day. Petrenko says the community at large has a very low awareness of the disorders. An estimated 80 percent of people who have FASD were never diagnosed.
"Many adults may wonder, 'I know I have a family history of alcohol use. I may have also been adopted or raised by a relative,' and that may start to set off questions," she explained. " 'Could this explain why I struggled so much in my life growing up and have trouble making friends and keeping jobs and making mistakes over and over again? Could this be it?' "
Families who are interested in participating in the research can call the project coordinator at 585-275-2991, extension 190 or email.