When Maria and her husband adopted their 2-year-old about a decade ago, in many ways he was a typical toddler. He loved to climb on furniture, and his curly hair bounced as he walked. But the boy, whose parents requested he be identified by his initials DL, was small for his age, had a lazy eye and said only a handful of single words. The reason, the parents had been told by a caseworker, was that DL had been exposed to illicit drugs and alcohol in the womb.
At age 3, a genetics doctor diagnosed DL with Fetal Alcohol Spectrum Disorder (FASD), part of a group of lifelong, whole-body disorders resulting from alcohol exposure in the womb. His mother, Maria, who requested to use only her first name to maintain DL’s privacy, said she remembered the doctor telling her that his small size was related to the condition, but she doesn’t recall anyone telling her that it could affect DL’s learning and behavior. Unfortunately, so far it has. In preschool, DL didn’t talk at the same level as his peers and received speech therapy. Maria feared his development was behind in other areas too. When DL reached kindergarten, Maria requested that the school assess him for special education. The school denied her request.
By 7th grade, DL was failing classes and had been suspended twice. Typically, a happy, social kid, he began to shut down and wouldn’t talk much.
“I felt like my hands were tied, I couldn’t do anything, didn’t know who to turn to, because all of the people helping me said that I was already getting all of the help I could get,” Maria said.
But DL wasn’t getting all the help he needed. His parents are hopeful that will soon change.
A recently passed California law, SB1016, signed by Gov. Gavin Newsom in September, should make it easier for DL and other children affected by FASD to access special education services. The law requires the California State Board of Education to include “fetal alcohol spectrum disorders” in the definition of “other health impairment,” one of 13 specified eligibility criteria for special education under the federal Individuals with Disabilities Education Act. The law goes into effect in January.
“I am over the moon!” said Kathryn Page, a doctor of psychology who specializes in the care of people with FASDs and who advocated for the bill. “It will help promote awareness and acceptance of this condition as a real thing.”
FASDs are alcohol-related disorders thought to be the most common birth defects in the western world. The Centers for Disease Control and Prevention, CDC, estimates in the United States that FASD may affect as many as 1 in 20 school-age children, about twice the rate of autism.
Historically, prenatal alcohol exposure was associated with low intelligence and characteristic physical traits, including small physical size, small head, and distinct facial features, such as short eyes and thin upper lip. However, experts have come to realize that those features aren’t as important for diagnosing FASD as understanding brain function. The type of alcohol exposure, quantity and timing during gestation, as well as genetic vulnerability, influence how alcohol can affect a developing fetus – resulting in a variety of physical and developmental impairments, ranging from mild to severe. There is no known safe level of alcohol consumption during pregnancy.
Alcohol is a teratogen, meaning it can cause brain and body abnormalities in a developing fetus. Different combinations of those abnormalities make up the four specific diagnoses within the FASD spectrum. Most people with FASD have normal intelligence and no obvious physical signs, so familiarity with characteristic learning and behavioral patterns is important for identifying them.
FASD disrupts executive functioning, which is the brain’s “central command center” for planning and organization, as well as self-control and emotional regulation. In addition to focus and attention, FASD impairs thinking, reasoning and understanding abstract concepts. These same brain differences also impact behavior and peer interactions, resulting in immature or inappropriate social responses.
Without proper diagnosis and interventions, many individuals with FASD can face adversity.
“People with FASDs have characteristics and experiences that increase their vulnerability to environmental influences, external pressures and stressors in general,” Page said.
When people affected by FASD do not have access to treatment or support, they are then more susceptible to academic failure, mental illness, substance use, homelessness and involvement with the criminal justice system.
DL has struggled with schoolwork and peer relationships, Maria said.
“He has poor judgement in social situations, doesn’t know when to stop, and is very easily pressured into things by friends,” she said.
Because he physically looked like his peers, his teachers and doctors didn’t fully appreciate the impact of fetal alcohol exposure on his brain. They attributed many of his learning struggles to poor focus and attention deficit hyperactivity disorder (ADHD). The school provided longer work times and seating rearrangements in an attempt to address his attention problems. Doctors prescribed ADHD medication and Maria said she remembered thinking, “finally a pill would fix it…” but none of the interventions were enough for DL to catch up to his classmates.
Sadly, many children with FASD are never diagnosed or are diagnosed late in life. Page, the psychologist, wasn’t diagnosed with an FASD until her fifties, though she’d had lifelong problems with memory, organization and “clumsy fingers,” due to poor fine motor skills. Eventually, her doctorate mentor diagnosed her.
Determined to make a difference for others with the disorder, Page and other FASD advocates connected last year with state senator Anthony Portantino (D—La Canada Flintridge) and his bipartisan co-authors to sponsor SB1016.
Portantino said he was motivated to help after learning from friends affected by FASD, as well as by his own childhood struggles with ADHD and dyslexia.
“The earlier the intervention, the earlier children can be directed to the right services, and the higher the chance that individuals with an FASD can achieve their full potential and lead productive lives,” Portantino said.
But, the bill was not without adversaries.
The California Teachers Association opposed the bill, arguing that the existing law is sufficiently broad to include pupils with FASD-related needs. Proponents of SB1016 pointed out that “in California, most professionals are not trained in FASD or even aware of the disorder.” At a public hearing for the bill, they said “specifically listing FASD…is necessary because its absence causes children to be under-identified.”
Many of the logistics for rolling out SB1016, including training for educators, are not yet in place. Another hurdle is that the legislature did not allocate additional funds for implementing the new law. As many as 300,000 school kids could become eligible for services, potentially burdening the already-strained state education budget.
As they wait for the new bill to take effect, DL and his parents are feeling optimistic that he will be more successful next school year. DL recently underwent comprehensive neuro-psychological testing at the Los Angeles County Department of Mental Health paid for by his health insurance. The testing identified typical deficits seen with FASD, including memory problems, poor auditory learning, intellectual challenges and fine motor difficulties. His school is planning to use this information to develop an updated special education plan for him.
Maria said that SB1016 is long overdue and hopes that new services can help DL and other kids like him reach their full potential.
“The sooner kids can get evaluated, the better,” Maria said. “I am hopeful (my son) can become the person he was meant to be.”
Roxanne Chang is pediatrician at Harbor-UCLA Medical Center and specializes in adoption medicine and the care of children with developmental disabilities.
ChrisAnna Mink is a pediatrician at Harbor-UCLA Medical Center. She is also a health journalist, and a contributor and editorial board member of the California Health Report.
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