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Fetal alcohol syndrome doesn’t get nearly enough attention. A reporter set out to change that

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Fetal alcohol syndrome doesn’t get nearly enough attention. A reporter set out to change that

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Marc

Carl and Malette Young struggled for more than a decade to find help for their adopted son, Marc, who has fetal alcohol syndrome. Marc spent most of his adolescence bouncing between inpatient facilities for children with behavioral issues and his home in rural North Dakota.

He suffers from aggression, compulsion and developmental disabilities stemming from alcohol exposure in the womb. He didn’t receive a formal diagnosis of fetal alcohol syndrome (FAS) until he was 16, and even then there were few resources to help him.

Since turning 18 in July 2019, he has been arrested three times and struggled with substance use and homelessness. He has aggressive tendencies — he’s previously sent his dad to the emergency room with a head injury. His parents worry that without support services, Marc will end up in prison.

Marc’s story, sadly, isn’t all that uncommon among the estimated tens of millions of children and adults who have lifelong impairment from prenatal exposure to alcohol. And though the problem is growing, as alcohol consumption increases among pregnant women, there’s little help for people with this condition and virtually no federal attention to the problem.

I became interested in this story while covering the federal response to the opioid epidemic. I would talk to doctors, advocates and families about the harmful effects of drug addiction and almost always, someone would bring up alcohol misuse and lament on how little attention the problem receives, despite its severity and prevalence.

I decided to zero in on children impacted by alcohol exposure in the womb, given the growing attention on children affected by prenatal opioid exposure. Alcohol exposure in the womb is much more common and is known to result in lifelong developmental and intellectual disabilities. Yet there is no federal effort or any significant funding for affected people.

I was also interested in why the Substance Abuse and Mental Health Services Administration, or SAMHSA, eliminated the federal government’s only program to help families and individuals impacted by FAS in 2015, under the Obama administration. 

I discovered that the program was cut due to budget restraints and there isn’t a large enough, or powerful enough, constituency that could have saved it. The advocacy for people with FAS is made up largely of parents and other family members, and it doesn’t have the financial backbone of many other disability groups. I thought this would be an important story to POLITICO’s audience, which includes federal and state policymakers, lobbyists, advocates, as well as the general population.

After my story was published, I received email from across the country. Many people told me they know someone going through the same struggles as Marc and his family.

One challenge with reporting about alcohol is that aside from advocates, families, and addiction doctors working in the space, few people want to talk about the problem. Alcohol is widely accepted in our society. The issue of FAS is sometimes unfairly and incorrectly laden with blame on the mother.

Another issue I ran into is that many families willing to speak about their experiences with FAS involve adopted children who were exposed to alcohol in the womb, and the biological mother is no longer in the picture. That was the case for two children I focused on in my story. Marc’s mother is incarcerated in Florida and Marcus’s mother passed away when he was very young. It was more difficult to get a full picture without the mothers’ perspectives.

But I did learn that much more is needed for pregnant women struggling with substance use disorder. For example, doctors I spoke with in North Dakota said mothers are rarely screened for addiction issues in his state and there’s little help for those seeking treatment and information about FAS.

In future reporting, I hope to get a biological mother’s perspective and focus more on the challenges she faces to get the help she needs.

For this story, I wanted to focus on the families and individuals with FAS. Most people I reached out to were happy to speak with me, though some families did not want to be on the record. I spoke to several parents, solely for background information, and though it’s always better to have conversations on the record, these interviews helped me understand what these families go through.

Others were more than happy to share their stories on the record. I made connections with staff from the National Organization on Fetal Alcohol Syndrome, who invited me to the group’s annual meeting in Washington, DC. T there I met families from across the country who have children with FAS and other advocates trying to make the issue a priority for state and federal lawmakers.

I met Carl Young at that meeting. He told me about his son and agreed to speak with me further and put me in touch with providers, counselors, and other advocates in North Dakota and across the country.

Not long after, I booked my ticket to North Dakota and sat down with Carl, many of Marc’s providers, and another family with a son who has FAS. I didn’t get to speak to Marc in person because he was in jail. Instead, we communicated by phone several times when I was back in Washington.

One challenge we ran into was photographing Marc. I had arranged a freelance photographer to visit Marc in Bismarck . Unfortunately, Marc changed his mind the night the photographer went to meet him and did not show up. 

We had to improvise and his parents sent me old photos that we used for the piece instead.

One piece of advice for journalists reporting on a topic like this is to be as flexible as possible. If an interview or appointment falls through, don’t panic and make sure to leave plenty of time for interviews and photo shoots.

After reporting more on FAS and FASD, I also decided I wanted to broaden my project out and continue reporting on alcohol addiction, generally, and how the issue has been ignored and forgotten among policymakers in Washington, despite its prevalence.

Like many reporting projects, mine was upended by the coronavirus pandemic. Much of my reporting plans to focus on alcohol have been put on hold while I report on all aspects of the virus that has eclipsed all other news stories. 

I plan to revisit plans to report on alcohol addiction, including how the coronavirus pandemic has impacted those suffering from addiction issues in the coming weeks.

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