One evening Amy Rothfuss slipped a notebook into her Bible without paying much attention. The next morning, she looked at the passage. Isaiah 54:4.<\/p>\n
\u201cDo not be afraid; you will not be put to shame. Do not fear disgrace; you will not be humiliated. You will forget the shame of your youth and remember no more the reproach of your widowhood.\u201d<\/p>\n
She took it as a sign. \u201cIt\u2019s time to shine a bright light on this hidden disease,\u201d the Rochester native says. \u201cI am not ashamed of my child.\u201d<\/p>\n
Fetal Alcohol Spectrum Disorders: A Multidisciplinary Approach<\/em><\/strong><\/h3>\nChristie Petrenko<\/a>, a research psychologist at the University of Rochester, coedits a concise yet comprehensive resource on FASD for clinicians and researchers. Written by experts in the field, the book guides prevention efforts, the diagnostic process, school and community interventions, and global policy efforts. (Springer Publishing, 2023<\/a>)<\/p>\n<\/div>\nRothfuss\u2019s 11-year-old son Heratio (whose last name his mother asked to withhold) has fetal alcohol syndrome (FAS)\u2014brain damage sustained in utero and traceable to pre-natal alcohol consumption.<\/p>\n
FAS, which comes with subtle facial characteristics, is a subgroup\u2014although not necessarily a more severe diagnosis\u2014of the all-encompassing fetal alcohol spectrum disorders (FASD). Children and adults with FASD struggle with lifelong learning and behavioral problems, and without appropriate supports are at high risk for adverse conditions, such as mental health problems, trouble with the law, school disruption, and substance use.<\/p>\n
Because of the condition, Heratio\u2019s decision making is impaired and he struggles to control emotions and impulses. At school, he gets support services and a personal helper in his special education classroom. Departures from routines that others might find simply irritating cause Heratio acute distress.<\/p>\n
What happens next depends in large part on the adults around him. If they whisper soothingly and engage him in breathing exercises, they may avert a meltdown. Conversely, loud voices or chiding may result in Heratio\u2019s running out of the classroom, possibly hitting staff or fellow students, sometimes taking off his shoes and throwing them, or lying on the floor\u2014crying. \u201cChaos,\u201d as his mother puts it.<\/p>\n![\"Boy](\"https:\/\/www.rochester.edu\/newscenter\/wp-content\/uploads\/2021\/11\/fea-heratio.jpg\")
Heratio is among a group of children and their families benefiting from a new paradigm in FASD treatment. Developed by University of Rochester psychologists, the model focuses, among other things, on people\u2019s strengths rather than just their deficits, and on making changes that are important to the patient, not the practitioner. (University of Rochester photo \/ J. Adam Fenster)<\/figcaption><\/figure>\nFetal alcohol spectrum disorders are underrecognized<\/strong><\/h3>\n\n12 signs and symptoms common in children and adults with FASD<\/h2>\n
Symptoms of fetal alcohol spectrum disorders can include:<\/p>\n
\n- Trouble with learning, memory, and attention span<\/li>\n
- Difficulty communicating, understanding language, decoding meaning<\/li>\n
- Being given to hyperactivity, impulsivity, and other behavioral problems<\/li>\n
- Poorer social skills<\/li>\n
- Vision and hearing problems<\/li>\n
- Specific subtle facial features\u2014small eyes, thin lip, flattened groove (philtrum) under the nose<\/li>\n
- \u201cFailure to thrive\u201d during early childhood, or low height or weight<\/li>\n
- Difficulty following multiple-step instructions<\/li>\n
- Difficulty transitioning from one activity to the next<\/li>\n
- Difficulty with being flexible and adjusting to changes in routine<\/li>\n
- Difficulty regulating emotions<\/li>\n
- Acting younger than chronological age<\/li>\n<\/ul>\n
FASD characteristics are not unique\u2014they are individually present in a variety of other neurodevelopmental and genetic conditions, such as autism spectrum disorder, ADHD, and intellectual disability. Childhood trauma can also play a role. A careful evaluation is important to diagnose and treat FASD.<\/p>\n
\n- Here\u2019s a directory of providers<\/a> in your area.<\/li>\n<\/ul>\n<\/div>\n
FASD is a pressing public health problem with experts estimating that it affects just as many people as autism, if not more. According to the National Institutes of Health<\/a>, 1 to 5 percent of Americans may have FASD, making the condition more prevalent than previously recognized. And yet, it is often missed. One reason is the shame of having borne a child with FASD.<\/p>\nRothfuss is Heratio\u2019s biological mother. Her willingness to speak publicly about her past is almost unheard of among biological moms of children with FASD.<\/p>\n
\u201cI was not in a good spot then,\u201d says Rothfuss of her life before Heratio. \u201cI am a different person today.\u201d<\/p>\n
At the time of Heratio\u2019s conception, Rothfuss was physically and verbally abused by her late partner, Heratio\u2019s father. Both parents were addicted to cocaine and Rothfuss drank at the end of the night to calm herself down from the stimulation of the drug. Living in the basement of her partner\u2019s mother, with no health insurance, her life\u2014by her own account\u2014was out of control. She was about six months along before she realized she was pregnant.<\/p>\n
Rothfuss credits her newfound faith, along with treatment for her drug use, for turning her life around and giving her the strength to speak up. But for most biological mothers, the stigma that comes with having contributed to one\u2019s child\u2019s disability is simply too great and the vast majority remain in the shadows, often too ashamed to ask for help.<\/p>\n
When parents\u2014biological or not\u2014do seek help, they often have trouble getting the condition diagnosed. That\u2019s because a diagnosis generally requires a specialty clinic, which are few and far between.<\/p>\n
In New York state, there are only two: one in New York City, consisting of a single provider; and the other, the University of Rochester<\/a>\u2019s FASD Diagnostic and Evaluation Clinic, a partnership between the Department of Developmental and Behavioral Pediatrics at Golisano Children\u2019s Hospital and Mt. Hope Family Center<\/a>.<\/p>\nMt. Hope Family Center is a unique resource. Affiliated with the Department of Psychology<\/a> in the University\u2019s School of Arts and Sciences, it combines scientific research, clinical services, and hands-on mentoring and training in one facility. In a typical year, the center provides evidence-based prevention and intervention services for a host of conditions, including FASD and trauma, to more than 900 children and families in the Rochester area.<\/p>\nAt the nexus of the FASD partnership between the Mt. Hope Family Center and the University\u2019s Medical Center is Christie Petrenko. A research psychologist at Mt. Hope with joint appointments in psychology and in pediatrics, Petrenko has been involved in research and clinical interventions with children with FASD and their families for more than 15 years.<\/p>\n
Lynn Cole<\/a>, clinical services director at UR Medicine\u2019s division of Developmental and Behavioral Pediatrics<\/a>, says their FASD specialty clinic, which has a capacity to see about 220 children each year, has made the University a big draw. \u201cSometimes families are driving five to six hours to come to Rochester for a diagnosis,\u201d says Cole, who works closely with Petrenko on FASD evaluations. \u201cWe are also seeing kids from Vermont and Pennsylvania and are even getting requests from overseas now.\u201d<\/p>\n![\"Side-by-side](\"https:\/\/www.rochester.edu\/newscenter\/wp-content\/uploads\/2021\/11\/inline-kates-cards-bee-well.jpg\")
Kate, who was diagnosed with fetal alcohol syndrome, embraces creativity as her \u201csuperpower.\u201d She makes and sells greeting cards, and has donated $450 of her proceeds to charity to help families defray the costs of traveling for FASD testing at the University of Rochester Medical Center. (Photo and artwork courtesy of Bonn-Schaefer family)<\/figcaption><\/figure>\nIt\u2019s a drive Amy Bonn \u201989 is glad she made. She lives in Plattsburgh, New York, with her husband, Richard Schaefer, and their daughter, Katharine, whom they adopted at just over a year old.<\/p>\n
Early on Bonn and Schaefer suspected that something was amiss with Kate\u2014which she prefers to be called. She just wouldn\u2019t sleep. At times, she\u2019d run on one or two hours of sleep a night for three or four consecutive days. In response, her parents bought her a 14-foot high, inflatable water slide. \u201cOur thinking was\u2014it\u2019s fun, great exercise, and will bring people over. And I remember she was on that for hours,\u201d recalls Schaefer. Any kid, they thought, would eventually keel over and sleep like a rock. Not Kate.<\/p>\n
They saw five different specialists, including psychologists, a psychiatrist, even another FASD expert. Two of the clinicians misdiagnosed Kate. The other three couldn\u2019t settle upon a diagnosis.<\/p>\n
Next came a string of failed behavioral therapies. Meanwhile, leafing through her alma mater\u2019s magazine, the Rochester Review<\/em><\/a>, Bonn found a short piece about a study on FASD by Petrenko. Bonn knew she needed to get her daughter to Rochester. A couple of months later, she and Kate, then 9, made the five-and-a-half-hour journey from Plattsburgh to the University of Rochester Medical Center, where they met both Cole and Petrenko. The two specialists put Kate through a battery of tests. There was no doubt\u2014Kate had FAS.<\/p>\nWhile no parent wants to hear that diagnosis\u2014finally having a definitive answer was \u201ctransformative,\u201d according to her mother. \u201cIt was the most important day of Kate’s life.\u201d<\/p>\n
Rothfuss\u2019s 11-year-old son Heratio (whose last name his mother asked to withhold) has fetal alcohol syndrome (FAS)\u2014brain damage sustained in utero and traceable to pre-natal alcohol consumption.<\/p>\n
FAS, which comes with subtle facial characteristics, is a subgroup\u2014although not necessarily a more severe diagnosis\u2014of the all-encompassing fetal alcohol spectrum disorders (FASD). Children and adults with FASD struggle with lifelong learning and behavioral problems, and without appropriate supports are at high risk for adverse conditions, such as mental health problems, trouble with the law, school disruption, and substance use.<\/p>\n
Because of the condition, Heratio\u2019s decision making is impaired and he struggles to control emotions and impulses. At school, he gets support services and a personal helper in his special education classroom. Departures from routines that others might find simply irritating cause Heratio acute distress.<\/p>\n
What happens next depends in large part on the adults around him. If they whisper soothingly and engage him in breathing exercises, they may avert a meltdown. Conversely, loud voices or chiding may result in Heratio\u2019s running out of the classroom, possibly hitting staff or fellow students, sometimes taking off his shoes and throwing them, or lying on the floor\u2014crying. \u201cChaos,\u201d as his mother puts it.<\/p>\n Symptoms of fetal alcohol spectrum disorders can include:<\/p>\n FASD characteristics are not unique\u2014they are individually present in a variety of other neurodevelopmental and genetic conditions, such as autism spectrum disorder, ADHD, and intellectual disability. Childhood trauma can also play a role. A careful evaluation is important to diagnose and treat FASD.<\/p>\n FASD is a pressing public health problem with experts estimating that it affects just as many people as autism, if not more. According to the National Institutes of Health<\/a>, 1 to 5 percent of Americans may have FASD, making the condition more prevalent than previously recognized. And yet, it is often missed. One reason is the shame of having borne a child with FASD.<\/p>\n Rothfuss is Heratio\u2019s biological mother. Her willingness to speak publicly about her past is almost unheard of among biological moms of children with FASD.<\/p>\n \u201cI was not in a good spot then,\u201d says Rothfuss of her life before Heratio. \u201cI am a different person today.\u201d<\/p>\n At the time of Heratio\u2019s conception, Rothfuss was physically and verbally abused by her late partner, Heratio\u2019s father. Both parents were addicted to cocaine and Rothfuss drank at the end of the night to calm herself down from the stimulation of the drug. Living in the basement of her partner\u2019s mother, with no health insurance, her life\u2014by her own account\u2014was out of control. She was about six months along before she realized she was pregnant.<\/p>\n Rothfuss credits her newfound faith, along with treatment for her drug use, for turning her life around and giving her the strength to speak up. But for most biological mothers, the stigma that comes with having contributed to one\u2019s child\u2019s disability is simply too great and the vast majority remain in the shadows, often too ashamed to ask for help.<\/p>\n When parents\u2014biological or not\u2014do seek help, they often have trouble getting the condition diagnosed. That\u2019s because a diagnosis generally requires a specialty clinic, which are few and far between.<\/p>\n In New York state, there are only two: one in New York City, consisting of a single provider; and the other, the University of Rochester<\/a>\u2019s FASD Diagnostic and Evaluation Clinic, a partnership between the Department of Developmental and Behavioral Pediatrics at Golisano Children\u2019s Hospital and Mt. Hope Family Center<\/a>.<\/p>\n Mt. Hope Family Center is a unique resource. Affiliated with the Department of Psychology<\/a> in the University\u2019s School of Arts and Sciences, it combines scientific research, clinical services, and hands-on mentoring and training in one facility. In a typical year, the center provides evidence-based prevention and intervention services for a host of conditions, including FASD and trauma, to more than 900 children and families in the Rochester area.<\/p>\n At the nexus of the FASD partnership between the Mt. Hope Family Center and the University\u2019s Medical Center is Christie Petrenko. A research psychologist at Mt. Hope with joint appointments in psychology and in pediatrics, Petrenko has been involved in research and clinical interventions with children with FASD and their families for more than 15 years.<\/p>\n Lynn Cole<\/a>, clinical services director at UR Medicine\u2019s division of Developmental and Behavioral Pediatrics<\/a>, says their FASD specialty clinic, which has a capacity to see about 220 children each year, has made the University a big draw. \u201cSometimes families are driving five to six hours to come to Rochester for a diagnosis,\u201d says Cole, who works closely with Petrenko on FASD evaluations. \u201cWe are also seeing kids from Vermont and Pennsylvania and are even getting requests from overseas now.\u201d<\/p>\n It\u2019s a drive Amy Bonn \u201989 is glad she made. She lives in Plattsburgh, New York, with her husband, Richard Schaefer, and their daughter, Katharine, whom they adopted at just over a year old.<\/p>\n Early on Bonn and Schaefer suspected that something was amiss with Kate\u2014which she prefers to be called. She just wouldn\u2019t sleep. At times, she\u2019d run on one or two hours of sleep a night for three or four consecutive days. In response, her parents bought her a 14-foot high, inflatable water slide. \u201cOur thinking was\u2014it\u2019s fun, great exercise, and will bring people over. And I remember she was on that for hours,\u201d recalls Schaefer. Any kid, they thought, would eventually keel over and sleep like a rock. Not Kate.<\/p>\n They saw five different specialists, including psychologists, a psychiatrist, even another FASD expert. Two of the clinicians misdiagnosed Kate. The other three couldn\u2019t settle upon a diagnosis.<\/p>\n Next came a string of failed behavioral therapies. Meanwhile, leafing through her alma mater\u2019s magazine, the Rochester Review<\/em><\/a>, Bonn found a short piece about a study on FASD by Petrenko. Bonn knew she needed to get her daughter to Rochester. A couple of months later, she and Kate, then 9, made the five-and-a-half-hour journey from Plattsburgh to the University of Rochester Medical Center, where they met both Cole and Petrenko. The two specialists put Kate through a battery of tests. There was no doubt\u2014Kate had FAS.<\/p>\n While no parent wants to hear that diagnosis\u2014finally having a definitive answer was \u201ctransformative,\u201d according to her mother. \u201cIt was the most important day of Kate’s life.\u201d<\/p>\nFetal alcohol spectrum disorders are underrecognized<\/strong><\/h3>\n
12 signs and symptoms common in children and adults with FASD<\/h2>\n
\n
\n