Smith Howard is an attorney with the National Disability Rights Network, whose work on FASD focuses on advocating for families and individuals living with related disorders. Waite, a physician, is medical director at the Keith Haring Clinic at Children’s Village, in New York City, which serves children in the child welfare and juvenile justice systems.
Their careers came full circle in July when Waite and Smith Howard joined to present at a conference on FASD at Colby. Though they didn’t know each other on Mayflower Hill, their professional lives evolved on parallel tracks.
Waite found himself drawn to the study of FASD after seeing cases of adopted and foster children who had loving, supportive environments from a very early age but were presenting massive behavioral challenges. “So I started reading about alcohol,” he said, “and I realized this is what’s going on.” Smith Howard found similar cases but also had a personal connection as a member of her family was identified as on the spectrum when diagnosis was still in its infancy. Finally, at a conference, a mutual colleague made the Colby connection for them.
The deleterious effects of alcohol on the prenatal environment have been intimated for centuries, but the disorder wasn’t given a name until 1973 when a landmark paper was published in the British medical journal The Lancet. “It was described as facial features, and that’s the way this whole thing was identified,” Waite said. But science now says facial features are characteristic with just 10 to 20 percent of affected children.
Scientific understanding of the expanse of spectrum disorders has advanced, but public understanding hasn’t. Waite and Smith Howard are advocates for public education—lots of it—and increased funding for early identification of FASD and services for children and adults living with the disorder.
One obstacle for them and others is the deeply ingrained stigma around alcohol consumption during pregnancy that keeps many mothers from admitting they drank, and as a result, the children go undiagnosed. Also, nearly half of pregnancies worldwide are estimated to be unintended. It’s not uncommon for women to have consumed some alcohol before discovering their pregnancy, and the first trimester can be a sensitive time for fetal development.
“I think a more effective strategy would be ‘couples that are planning on having a child should both abstain from drinking,’ because it includes the man as well as the woman, and it is a more supportive message.” —Doug Waite ’84
“I think a lot of people don’t know that even a small amount of alcohol during the first trimester can have a significant impact,” Smith Howard said. “It doesn’t matter who you are, any walk of life.” But alcohol effects people differently, she said. A woman whose child has FASD may actually have drunk a very small amount of alcohol, while another woman might have consumed much more and her child turned out just fine.
“We have to be careful in our judgment because it’s so variable,” Smith Howard said. “But what that means is there’s not a clear statement of, ‘You can have this much.’ And that’s what people want.”
In 2016 the Centers for Disease Control recommended that women of reproductive age who are not actively preventing pregnancy should avoid alcohol—period.
The public decried what was widely viewed, as Waite puts it, as a “nanny-state” recommendation.
Defying stereotypical assumptions, said Waite, the women who tend to drink during pregnancy are white, college-educated women. “So those are the people that the CDC was trying to reach. I think a more effective strategy would be ‘couples that are planning on having a child should both abstain from drinking,’ because it includes the man as well as the woman, and it is a more supportive message.”
In fact, Waite advocates for a different way of thinking that would support pregnancy free of all sorts of environmental neurotoxins, an area he calls prenatal ecology. He reeled off a list of potential neurotoxins, including lead, plastics, and flame-retardant chemicals.
“All these things can conspire to give similar neurobehavioral effects, and right now we don’t have an adequate safety net,” he said. Children exposed to toxins before birth often have special needs and behavior problems. Some end up in trouble with the law, and their problems aren’t addressed there, either. “They do stupid stuff, we lock them up,” Waite said.
Smith Howard sees the outcome of that treatment frequently in her clients—children identified as having willfully created behavioral problems, or ADHD, that cannot be treated with medication. Often they have been expelled from school or referred to the juvenile justice system.
It might seem an intractable problem but, in July, as Waite, Smith Howard, and their peers gathered at Colby, there was optimism. “With the right interventions and support,” Waite said, “we can help children and adults with fetal alcohol spectrum disorders build upon their strengths instead of highlighting their failures.”