By Christie Petrenko
I find myself in a small, nondescript meeting room in my county’s Department of Human Services. Again. The faces are familiar — the judge, the developmental service agency representatives and the disability rights lawyer who has invited me again to testify. The only person new to this room is the caregiver — a grandmother of a 10-year-old boy whom we’ll call “Marcus.”
As a researcher and psychologist I have been through this before. Ahead lies an uphill battle to get Marcus qualified for the developmental disabilities services he desperately needs. I am discouraged and frustrated. If Marcus had autism or Down syndrome, things would be different. But he has a fetal alcohol spectrum disorder. In New York State, a child with FASD is not eligible for disability services. While everyone here agrees Marcus has a “substantial handicap,” the diagnosis still doesn’t count.
FASD affects 2 to 5% of children in the U.S., more than autism or other similar disabilities. Yet, FASD remains largely unknown. Many teachers, doctors or even mental health professionals don’t talk about it, leaving families unsure where to turn.
The stigma surrounding FASD is considerable, partly because alcohol and other substance use are still considered in our society to be moral flaws. No woman uses alcohol during pregnancy to hurt her baby. Often, she is unaware she is pregnant, or struggles with a (treatable) substance use disorder. The stigma, however, keeps people from talking about the problem and finding solutions.
Research shows that most providers receive little if any training in FASD. An estimated 80% of children with FASD go undiagnosed. Prenatal alcohol exposure changes how the brain develops, often making it harder for people with FASD to pay attention, learn and remember new things, solve problems and control their emotions.
Without the right diagnosis and services, it is assumed that individuals with FASD aren’t trying hard enough, or are being difficult on purpose, causing frustration for everyone and potentially worse issues such as trouble with the law or mental health problems.
But it doesn’t have to be this way.
Three factors are important in preventing devastating outcomes: early diagnosis, access to developmental disabilities services and a nurturing home and family. Yet we can’t do any of these things if we aren’t even talking about the problem. Teachers and providers need FASD training, which is very feasible if made a priority.
To solve this, creativity is a must. Services are already stretched thin. Researchers in the Collaborative Initiative on FASD (www.cifasd.org) are currently using technology to bridge geographical barriers for providers and families by developing new tools and interventions. These include electronic screening and diagnostic tools for providers and a mobile app for caregivers of children with FASD. But it’s a small group of researchers worldwide trying to tackle a big problem.
Christie Petrenko is an assistant professor and associate director of clinical training at the Mt. Hope Family Center at the University of Rochester.