暗网吃瓜

Rochester psychologists make the case for an approach to FASD based on patients鈥� strengths rather than deficits.

Editor鈥檚 note: This story was originally published on November 5, 2021. It has been updated and republished to reflect the 2023 release of Fetal Alcohol Spectrum Disorders: A Multidisciplinary Approach.听

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.

鈥淒o 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.鈥�

She took it as a sign. 鈥淚t鈥檚 time to shine a bright light on this hidden disease,鈥� the Rochester native says. 鈥淚 am not ashamed of my child.鈥�

Rothfuss鈥檚 11-year-old son Heratio (whose last name his mother asked to withhold) has fetal alcohol syndrome (FAS)鈥攂rain damage sustained in utero and traceable to pre-natal alcohol consumption.

FAS, which comes with subtle facial characteristics, is a subgroup鈥攁lthough not necessarily a more severe diagnosis鈥攐f 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.

Because of the condition, Heratio鈥檚 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.

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鈥檚 running out of the classroom, possibly hitting staff or fellow students, sometimes taking off his shoes and throwing them, or lying on the floor鈥攃rying. 鈥淐haos,鈥� as his mother puts it.

Fetal alcohol spectrum disorders are underrecognized

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 , 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.

Rothfuss is Heratio鈥檚 biological mother. Her willingness to speak publicly about her past is almost unheard of among biological moms of children with FASD.

鈥淚 was not in a good spot then,鈥� says Rothfuss of her life before Heratio. 鈥淚 am a different person today.鈥�

At the time of Heratio鈥檚 conception, Rothfuss was physically and verbally abused by her late partner, Heratio鈥檚 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鈥檚 mother, with no health insurance, her life鈥攂y her own account鈥攚as out of control. She was about six months along before she realized she was pregnant.

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鈥檚 child鈥檚 disability is simply too great and the vast majority remain in the shadows, often too ashamed to ask for help.

When parents鈥攂iological or not鈥攄o seek help, they often have trouble getting the condition diagnosed. That鈥檚 because a diagnosis generally requires a specialty clinic, which are few and far between.

In New York state, there are only two: one in New York City, consisting of a single provider; and the other, the 暗网吃瓜鈥檚 FASD Diagnostic and Evaluation Clinic, a partnership between the Department of Developmental and Behavioral Pediatrics at Golisano Children鈥檚 Hospital and .

Mt. Hope Family Center is a unique resource. Affiliated with the in the University鈥檚 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.

At the nexus of the FASD partnership between the Mt. Hope Family Center and the University鈥檚 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.

, clinical services director at UR Medicine鈥檚 division of , says their FASD specialty clinic, which has a capacity to see about 220 children each year, has made the University a big draw. 鈥淪ometimes families are driving five to six hours to come to Rochester for a diagnosis,鈥� says Cole, who works closely with Petrenko on FASD evaluations. 鈥淲e are also seeing kids from Vermont and Pennsylvania and are even getting requests from overseas now.鈥�

It鈥檚 a drive Amy Bonn 鈥�89 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.

Early on Bonn and Schaefer suspected that something was amiss with Kate鈥攚hich she prefers to be called. She just wouldn鈥檛 sleep. At times, she鈥檇 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. 鈥淥ur thinking was鈥攊t鈥檚 fun, great exercise, and will bring people over. And I remember she was on that for hours,鈥� recalls Schaefer. Any kid, they thought, would eventually keel over and sleep like a rock. Not Kate.

They saw five different specialists, including psychologists, a psychiatrist, even another FASD expert. Two of the clinicians misdiagnosed Kate. The other three couldn鈥檛 settle upon a diagnosis.

Next came a string of failed behavioral therapies. Meanwhile, leafing through her alma mater鈥檚 magazine, the , 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鈥擪ate had FAS.

While no parent wants to hear that diagnosis鈥攆inally having a definitive answer was 鈥渢ransformative,鈥� according to her mother. 鈥淚t was the most important day of Kate’s life.鈥�

A strength-based approach to FASD

The Rothfuss and Bonn-Schaefer families are both ensconced in the network of support forged at Mt. Hope Family Center. Rothfuss first met Petrenko at Family Night鈥攁 monthly, Friday-evening program run jointly by the center and the division of Developmental and Behavioral Pediatrics. At Family Night, 鈥渨e have topics for caregivers and therapeutic activities for kids of different ages,鈥� says Petrenko. They serve pizza to the group, which typically includes between 25 and 35 adults and 40 children, which is the maximum they can accommodate.

Rothfuss, Bonn, and Schaefer are also part of a private Rochester parent-run FASD Facebook group for which Petrenko serves as a source of information. They say the group, with its posts of new studies and shared experiences, has been a lifeline. Just knowing you鈥檙e not alone helps.

Perhaps most importantly of all, they know their families are finally getting the care they need.

These days, that means both Heratio and Kate benefit from a new paradigm in FASD treatment. After nearly two decades of research in the field, Petrenko is urging a shift in treatment toward a holistic approach that focuses, among other things, on people鈥檚 strengths rather than just their deficits, and on making changes that are important to the patient, not the practitioner. The , which she developed with her graduate student , is described in their article 鈥淔rom Surviving to Thriving,鈥� published in the International Review of Research in Developmental Disabilities. In July, Petrenko spoke about the new paradigm on a for the nonprofit organization FASD Success.

鈥淲e in the medical community often focus on a specific problem and try to reduce it,鈥� says Petrenko. Instead, practitioners ought to ask their patients to reflect on their own qualities and values. What are you good at? How do you contribute and fit into your family? How do those around you support you? What coping strategies work best for you? What do you need to thrive? What do you want to change about your life?

In a in the American Journal on Intellectual and Developmental Disabilities, Kautz-Turnbull, Petrenko, and , who received her PhD in clinical psychology from Rochester earlier this year and is now a postdoctoral fellow at Genesee Valley Psychology, will present results of a study in which they looked at the strengths of children with FASD, including personality characteristics, individual aptitude and skills, and positive effort and persistence.

They found that nearly all caregivers described their children as friendly, helpful, kind, and loving鈥攖erms psychologists refer to as exhibiting social motivation. Yet, more importantly, the team also noticed while conducting interviews for the qualitative study that the standard approaches used so far proved at times inadequate at capturing and assessing the full spectrum of what parents and caretakers told them.

鈥淐an we measure their answers fully with the measures we already have? No,鈥� says Kautz-Turnbull. 鈥淎s a consequence, we鈥檙e missing something really important in research on kids with FASD.鈥� What she and her coauthors were getting instead was a 鈥渢otally new construct.鈥�

The team also asked parents about their children鈥檚 influence on the family. 鈥淧eople don鈥檛 often think of kids with disabilities as having a positive effect on their families,鈥� says Petrenko. 鈥淚t鈥檚 a question that researchers just hadn鈥檛 asked.鈥� Instead, the focus is usually on stress and burden. The challenges of raising a child with FASD are, of course, real. Yet, families told the researchers that their children 鈥渃ompleted鈥� their family, or that despite the challenges they also brought 鈥渏oy鈥� and 鈥渟omething really meaningful鈥� to them. Subjective attributes such as strengths and positive influences are not accounted for in the regular measures clinicians use to assess a child鈥檚 functioning鈥攁n approach Petrenko calls 鈥渄eficit-focused research.鈥�

Kate and Heratio鈥檚 parents are delighted and relieved by the new paradigm. The strength-based approach suggests treatment and interventions be individually tailored, playing to a child鈥檚 natural strengths and building on already-existing support systems.

Says Schaefer: 鈥淵es, Kate has definite learning difficulties. But she鈥檚 very creative, which may be the way in which she compensates.鈥�

To Kate, creativity is her 鈥渟uperpower.鈥� In the last year, she鈥檚 been busy making greeting cards, which she sells on her own Facebook page, . Business is swift and Kate has so far donated $450 of her proceeds to a local charity, the , to help other families defray the costs of traveling to Rochester and staying in a hotel while their child, too, undergoes FASD testing at the University of Rochester Medical Center.

Kate鈥檚 mother likens the asset-based approach to her own community development work:聽鈥淵ou wouldn鈥檛 go into a community and say, 鈥極h, you have the highest diabetes rate, you live in a food desert, and your voting rate is incredibly low鈥欌�攚hen you’re trying to affect change.鈥� Instead, Bonn says, you need to focus on existing assets and keep things in perspective. 鈥淚f something bad happens during Kate鈥檚 day and she loses her temper, then it’s one moment in time, just a few minutes of her whole day. But if educators, policymakers, and physicians focus on those 10 minutes only, then they’re not using the rest of the day to fix it.鈥�

To Heratio鈥檚 mom, the new approach means seeing her 鈥渁mazing and funny鈥� son as 鈥渁 person, not a problem.鈥�

Meeting the challenges of access

For the Bonn-Schaefer family, Kate鈥檚 diagnosis meant direct help: for people with an official FAS diagnosis, the State of New York provides a generous safety net that starts in the school and extends well beyond with support services. 鈥淪he鈥檒l have people who can help guide her make life choices, besides us,鈥� says Bonn. 鈥淎nd that is just an incredible relief.鈥�

Yet, Kate is one of the lucky ones when it comes to support services from the New York State (OPWDD). Fewer than 10 percent of children on the entire FASD spectrum鈥攐nly those with the specific FAS label鈥攓ualify. The rest are left with what Petrenko calls 鈥渨oefully insufficient鈥� support. She, Cole, and other researchers and practitioners have been working for years to try to rectify what Petrenko calls a 鈥済laring inequality鈥� compared to how OPWDD supports other disabilities.

鈥淚鈥檓 thrilled that Kate has these supports, but it has been really discouraging and stressful to those families who have tried hard to get the same services for their children with similar or greater difficulties than kids like Kate, but who have a different diagnosis on the FASD spectrum and have therefore been repeatedly denied,鈥� says Petrenko. 鈥淭he OPWDD鈥檚 rationale just doesn鈥檛 make sense.鈥�

Research shows children with FASD who receive appropriate developmental disabilities services have better outcomes. The problem isn鈥檛 just in New York; it鈥檚 happening elsewhere in the US, too. That鈥檚 why the nonprofit (formerly the National Organization on Fetal Alcohol Syndrome) has taken notice and is looking for a nationwide response to the problem.

Better support, of course, goes hand-in-hand with correct detection and intervention, which means more and better-trained medical professionals who are able to spot and diagnose the disability correctly.

When Rochester鈥檚 FASD diagnostic clinic was established about six years ago, 鈥渨e quickly recognized that our capacity would never be large enough to serve all of the kids who need care,鈥� says Cole.

To that end, Cole has developed a program that builds upon Project ECHO (Extension for Community Healthcare Outcomes), which began at the University of New Mexico as a model for training community clinicians, to provide care for people with chronic and complex health conditions. Cole, with help from Petrenko and other colleagues, has adapted the existing model for a pilot project, trying to train more regional clinicians on how to diagnose the complex disorder.

Meanwhile, the Rothfuss and Bonn-Schaefer families have been beta testing Petrenko鈥檚 mobile FASD app鈥�FMF Connect鈥攖hat she has been developing with , a research assistant professor in the University鈥檚 . The app, which is part of the , funded by the National Institute on Alcohol Abuse and Alcoholism, is expected to be widely available in 2022. It鈥檒l give parents of children with developmental disabilities access to online information that is consistent, high-quality, and readable.

鈥淔ASD has sat in the dark for too long,鈥� says Heratio鈥檚 mother. 鈥淚f nobody points big lights at the problem, others will never know.鈥�

Kate, meanwhile, wants to help others in the same boat. Knowing what made her different has been vital to her.

鈥淚t鈥檚 not really my fault that I might have trouble in school sometimes,鈥� she says. 鈥淚 want other kids to know there鈥檚 nothing wrong with them鈥攖hat there鈥檚 help, and that it鈥檚 not their fault.鈥�

With that she reaches for another piece of blank cardstock, then into her large pouch of felt tip markers. The next greeting card order awaits.

FASD resources

• Email RocFASD@gmail.com to connect with the , a private online group exclusively for families of children with an FASD diagnosis.
• Wondering if your child needs an evaluation for FASD? Call UR Medicine鈥檚聽division of 聽at (585) 275-2986. You can also by state.
• Sign up to 聽about the FMF Connect app, which is expected to be widely available in 2022.