‘I wish I could help you’

Diagnosing and addressing fetal alcohol spectrum disorder

  • Leslie Leff in her office at the Cutchins Programs for Children and Families clinic in downtown Northampton. Staff Photo/Andy Castillo—

  • Leslie Leff in her office at the Cutchins Programs for Children and Families clinic in downtown Northampton. Staff Photo/Andy Castillo—

  • Parents and advocates talk about fetal alcohol spectrum disorder (FASD) during a recent forum on An Act Relative to Persons with Disabilities — a bill that would expand coverage for those with FASD — at the Unitarian Universalist Society in Northampton. Staff Photo/Andy Castillo—

  • Parents and advocates talk about fetal alcohol spectrum disorder (FASD) during a recent forum on An Act Relative to Persons with Disabilities, a bill that would expand coverage for those with FASD, at the Unitarian Universalist Society in Northampton. Staff Photo/Andy Castillo—

  • Parents and advocates talk about fetal alcohol spectrum disorder (FASD) during a recent forum on An Act Relative to Persons with Disabilities, a bill that would expand coverage for those with FASD, at the Unitarian Universalist Society in Northampton. Staff Photo/Andy Castillo—

  • Leslie Leff in her office at the Cutchins Programs for Children and Families clinic in downtown Northampton. Staff Photo/Andy Castillo

@AndyCCastillo
Published: 5/28/2019 9:36:36 AM

Leslie Leff, a clinical social worker with the Cutchins Programs for Families and Children in Northampton, has become tired of telling parents “I wish I could help you.”

“I work with children, primarily, who have experienced trauma,” Leff explained. “Kids come in, and it’s not that they don’t have an attachment (disorder). It’s not that they don’t have trauma. It’s that they also have this.”

The “this” Leff was referring to is fetal alcohol spectrum disorder (FASD), which is caused by alcohol consumption during pregnancy, according to the Centers for Disease Control (CDC). FASD encompasses a range of disabilities — including fetal alcohol syndrome — resulting from permanent brain damage and physical deformities line “structural problems of the heart and the eyes,” said Dr. Jonathan Schwab, a pediatrician at Northampton Area Pediatrics. Nationally and based on CDC statistics, FASD could be more prevalent than Down syndrome, cerebral palsy, sudden infant death syndrome, cystic fibrosis, and spina bifida combined, and about as common as autism, according to Enid Watson, director of screening and early Identification for the State FASD Task Force.

And yet, in her experience, FASD specific services in Massachusetts “are very, very limited,” Leff said, noting that she is professionally trained in social work, not treating someone with a neurobehavioral disorder like FASD. Cutchins Programs helps children dealing with trauma, sensory processing disorders, co-occurring emotional, and autism spectrum disorders, according to the program’s website.

Compared to neonatal abstinence syndrome (NAS), which happens when drugs are taken during pregnancy, Watson says drinking alcohol during pregnancy can be worse because the effects don’t necessarily go away. With the right treatment, a baby with NAS “can have few, if any, deficits” in the long term, assuming the mother didn’t smoke or drink alcohol, Watson said.

A recent CDC report titled “Consumption of Alcohol Beverages and Binge Drinking Among Pregnant Women Aged 18-44 Years — United States, 2015-2017,” warns, “Drinking alcohol while pregnant can cause miscarriage, stillbirth, and fetal alcohol spectrum disorders. There is no known safe level of alcohol use during pregnancy.”

The spectrum disorder sometimes manifests through behavior — hyperactivity, compulsivity, distractibility, forgetfulness and aggression, according to Dr. Mary Alice Abbott, a geneticist at Baystate Medical Center in Springfield. Abbott says she frequently diagnoses FASD, based on referrals from primary care physicians like Schwabb, pediatric developmental specialists or early intervention programs. Most of the patients she sees are school-aged children, but Abbott says she has also diagnosed adults before.

“What’s challenging is that there’s not a diagnostic test. You can’t measure a blood level. There’s not a marker for exposure,” Abbott said.

Instead of a blood test, Abbott says she looks for short stature, low weight, small head circumference and certain facial features in the area between the nose and the upper lip.

“The features can be subtle,” Abbott said. “There could be birth defects, there’s neurocognitive and neurobehavioral abnormalities, which can look like ADHD, poor executive functioning, and there may be cognitive disabilities, but there may be normal intelligence.” All of this makes FASD “a very under-diagnosed condition,” Abbott said.

A disclaimer on the CDC’s website notes “we do not know exactly how many people have fetal alcohol spectrum disorders” because so many people go undiagnosed.

Based on data from the CDC’s Behavioral Risk Factor Surveillance System, 11.5 percent of pregnant women aged 18 to 44 reported drinking while pregnant, and 3.9 percent of the same reported binge drinking, according to a recent report.

The National Institutes of Health recently funded a nationwide study of first graders, which estimated up to 5 percent of the United States’ population could have some sort of FASD. Previous estimates pegged the number around 1 percent.

In her practice as a social worker, Leff says she has seen symptoms of FASD play out firsthand. Recently, Leff says she went to school with one her young patients. The child couldn’t remember how to make the letter ‘f’ even though she’d recently learned how to and could do so easily two days before, according to her teacher.

“Because so many of these kids look typical, it’s an invisible disorder,” Leff said. “A lot of those symptoms can also be symptoms of trauma. The difference between trauma ... and this physical disability is that this is permanent brain damage.”

But while children and teens may be eligible for services through the Department of Developmental Services (DDS) for other reasons — either a “sub-average” IQ of “approximately 70 or below” or “substantial functional limitations,” according to the department’s regulations — as she understands it, “there are no specific services for these kids,” Leff said.

A diagnosis of “FASD alone does not make an individual eligible for services,” said Elissa Snook, a spokeswoman with the state’s Department of Health and Human Services.

The nation as a whole seems to be moving forward in recognizing the prevalence and severity of FASD, but Mass. lags behind, Leff says. That’s because the state’s definition of ‘developmental disabilities’ is relatively narrow, based on that of the American Association of Intellectual and Developmental Disabilities, encompassing only those with severe functional difficulties and a lower-than-average IQ, in addition to Smith-Magenis syndrome, Prader-Willi syndrome, and Autism — which was added to the definition in 2013, according to Watson.

In contrast, the federal definition of the term encompasses a much wider range of disorders, including FASD.

“It’s not often that Mass. is outdone by federal guidelines. But this time we are,” Watson said.

A bill titled “An Act Relative to Persons with Disabilities,” which is currently being debated in the state legislature and is co-sponsored by State Senator Joan Lovely and State Representative Jim O’Day, seeks to change that by amending the state’s definition to the federal guideline. The change would expand the definition “to include all individuals with a developmental disability,” according to an introduction to the bill, which is currently in the Joint Committee on Children, Families and Persons with Disabilities. Those with other disabilities, such as cerebral palsy, who currently do not qualify for the same reasons, would also be able to receive care. Watson noted it’s unclear how many people would be affected because so few adults — compared to estimates — have been diagnosed with FASD.

To his knowledge, O’Day says this is the first time such a bill has been presented in the state legislature.

“By updating the state’s definition of developmental disability, more people, including those with Fetal Alcohol Spectrum Disorders, will have equal access to the appropriate and necessary resources they need from state agencies. Some of these services include having increased access to housing options, educational supports, health care services, family support services, and employment opportunities,” O’Day said. “Fetal Alcohol Spectrum Disorders often go undiagnosed or misdiagnosed. I hope that through this legislation’s movement on Beacon Hill, we can continue to bring awareness to and have conversations about FASD.”

If the bill were to be enacted, Watson said it would “increase the capacity of the state to serve these individuals,” opening up more training opportunities for clinicians and expanding resources such as job and life coaches, one-on-one teaching aids, and group homes designed specifically for those with the disorder.

At a recent forum led by Leff and Watson, a dozen or so parents and advocates gathered in the basement of the Unitarian Society of Northampton to listen to a young man who said he has FASD, who asked not to be identified in this story.

After the forum ended, Karen Zilberstein, clinical director at the Northampton chapter of A Home Within, a national organization which strives to meet the emotional needs of foster youth, pointed out there were only clinicians like herself, parents and advocates in attendance.

“It doesn’t have people’s attention, and it should,” Zilberstein said.

Another attendee, Mary Hoch of Amherst, a retired teacher who worked in New York’s suburban school system, attributed the relatively small turnout to the stigma that surrounds FASD, which contributes to under-diagnosis and prevents those who need help from seeking it out, according to Watson.

“There was a small group of people, and that’s the problem. People don’t know about it,” Hoch said.

Meanwhile, those with a diagnosis of FASD “don’t have anything,” Watson said. “They can’t run a budget. They can’t manage a household. They need a job coach. They need life coaches to help them succeed. We want to work toward that. That’s our vision,” Watson said. “If somebody needs a wheelchair, we in Massachusetts want to make sure they get a wheelchair, Watson continued. “We want to make sure that people with all disabilities are served in Massachusetts.”

For Leff, advocating for those living with FASD and their caretakers has become an issue of social justice.

“I’m a social worker. I believe in social justice,” Leff said. “I say to these parents ‘I wish I could help you. Have you tried this?’ They need more support. And the fact that there aren’t any other services is distressing.”

Andy Castillo can be reached at acastillo@gazettenet.com.


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