Living with FASD: ‘I’m going to have this for the rest of my life’

Part 3 of 3

SPONSORED: Like many other city-dwelling, twentysomething Alaskans, Shawna gets up in the morning and goes to work. She spends time with her family. She posts cute selfies on Instagram. She likes funny memes and reading and makeup.

And she has always known her brain is a little bit different.

She skipped first grade, then went to second grade twice. She’s great at memorizing things -- phone numbers, gas prices -- but couldn’t tell you the plot of the book she just finished reading. She’s got a great job at a local financial institution, but she’s always broke a few days after payday.

“I look perfectly fine,” Shawna said. “It doesn’t look like I should have difficulty with anything, but I do.”

Shawna -- whose last name has been withheld to protect her privacy -- experiences a fetal alcohol spectrum disorder.

“I’m a successful 23-year-old with FASD,” she said. “It’s possible.”

But it might not be, she added, if she didn’t know why her brain works the way it does. When she was 8 years old, Shawna got something that sets her apart from many other people with FASDs: a diagnosis.

The challenges of diagnosing FASDs

No one knows for sure how many babies are born each year with FASDs. According to the Centers for Disease Control, experts have estimated that the rate of FASD among U.S. schoolchildren may be as high as 1 to 5 percent. (For the sake of comparison, autism spectrum disorders affect one in 59 children.)

FASDs can be tricky to identify. Misdiagnosis and missed diagnosis are not unusual. In a small study in 2015, 80 percent of pediatricians failed to correctly diagnose patients who had FASDs.

Part of the problem is that diagnosis is hard unless the biological parent is able to provide a reliable history of alcohol exposure during pregnancy. Shawna grew up knowing her mom drank when she was pregnant, but that information isn’t always available. A child may be adopted, or parents may not be willing to admit to alcohol exposure, or they may not remember the details.

How much do you know about FASD? Test your knowledge:

Anchorage nurse practitioner Marilyn Pierce-Bulger is the owner and medical manager of FASDx Services, an agency that serves as a coordination hub for FASD diagnosis in Alaska. She said it’s not unusual to meet mothers who drank early in pregnancy and don’t realize that their children’s symptoms could be connected to that alcohol exposure.

“They’re not thinking about the fact that that teratogenic influence, even before they realized they were pregnant, could be part of the problem,” she said.

Then there are misdiagnoses. The lengthy list of FASD symptoms includes (among others) speech delays, memory problems, cognitive delays, hyperactivity, difficulty focusing, and learning disabilities. So it is perhaps unsurprising that FASD is sometimes misdiagnosed as ADHD or an autism spectrum disorder.

“If you don’t know that alcohol is part of the story, you might conclude that it is autism,” Pierce-Bulger said. If that weren’t complicated enough, she added, it’s also possible to be on both the autism spectrum and the fetal alcohol spectrum. She said it would be great to see a statewide version of the innovative child development services clinic recently launched within the tribal health care system, with an interdisciplinary team that identifies and addresses FASD, autism spectrum disorders, and other developmental concerns.

If a child is suspected to have FASD, their provider refers them to one of the state’s five diagnostic teams to hone in on their specific diagnosis and individual needs. And it is definitely a group effort, according to Pierce-Bulger; the teams include nurse practitioners, occupational therapists, speech and language pathologists, neuropsychologists, and parent navigators to serve as advocates for the families.

“It’s not simple,” she said. “You can’t be just one person doing this diagnosis. It’s time-consuming.”

‘If he were missing a leg, we would provide him a wheelchair’

Even if a child gets an FASD diagnosis, there aren’t necessarily systems in place to help their family manage. That’s why Pierce-Bulger founded the Alaska Center for Fetal Alcohol Spectrum Disorders, a nonprofit that hosts teen and parent support groups, holds community events and classes, and presents at professional conferences.

“There’s nothing to really support families or individuals with FASDs after they have the diagnosis,” Pierce-Bulger said. “That piece has not really been what it needs to be in order for individuals who have FASD to succeed in the world.”

Megan, a Kenai Peninsula mom whose teenage son has FASD, said she’s had to navigate a system that isn’t always well-equipped to help her family.

“FASD is an invisible, physical disability. Read that again,” Megan said. (Like Shawna, her last name has been withheld to protect her son’s privacy.) “If he were missing a leg, we would provide him a wheelchair, and build ramps and elevators, and there would be no question of providing services for a child.”

But FASD presents as behavior, and it’s not always clear what kind of support a child needs.

“What do ‘ramps’ look like for a differently-abled brain?” Megan asked.

Megan said she and her husband had to fight to get an individualized education program, or IEP, for their son.

“He scores higher than the 10th percentile on testing, so he cannot be qualified (as) learning disabled,” she said. And, she added: “The truth is, he’s not. He just learns differently.”

It wasn’t until he was officially diagnosed with FASD in the fourth grade that her son finally secured an IEP.

“This is so important because it allows his teachers to focus on where he needs to grow in his education, and not every specific grade,” Megan said. “If he were held to the same standard as his classroom peers, he would be failing every subject.” Because of his diagnosis, Megan’s son is able to be evaluated based on where he is in his development, and not where he’s “supposed” to be based strictly on his grade level.

Comprehension and complications

When she was younger, Shawna largely sailed through school. She was great at reading. She excelled at math.

Then things started to get complicated. She had a lot of difficulty with reading comprehension. And then she started algebra and hit a wall.

“I took algebra all the way from seventh grade until my second year of college,” Shawna said. Night after night, she’d sit at the table with her mom and go through the math concepts. She’d learn it. She’d feel like she had it. And then she’d go back to school the next day, and she’d have forgotten it. It wasn’t until college that the concepts were finally cemented enough for her to pass algebra with a B.

That’s not an unusual experience for someone with FASD, according to Anchorage OB/GYN Stephanie Eklund.

“A lot of them will do fine in elementary school, or maybe they (were diagnosed with) a little ADHD or autism,” she said. “A lot of them look perfectly normal. Then they get to middle school, and that’s when that logic starts to develop in most people.”

Unless you have an FASD.

“Think about how frustrating for the kid,” Eklund said. “They don’t understand why they’re different. They know that they’re not the same. They don’t have that same ability to work through problems. They hit algebra, they hit other things like that ... and they can’t do it. It’s so frustrating for them, so they get angry all the time, and that’s frustrating for teachers and parents, and it’s just this never-ending cycle.”

Even for Shawna, who knew her diagnosis and understood why she was struggling, emotions sometimes ran high during those teenage years, especially when she felt frustrated by her FASD.

“I was mad at (my mom) for a long time,” Shawna said.

As she got older and developed her own relationship with alcohol, her perspective changed -- and so did her feelings toward her mother.

“I did forgive her, in a sense,” Shawna said. “That anger just kind of fizzled away. I replaced it with empathy.”

Still, she’s not shy about talking frankly to her friends who are pregnant and urging them not to drink.

“I feel very strongly about it, because I know what a hard life it is,” Shawna said. “I would not wish upon my worst enemy the life that I live in my own head.”

‘If I didn’t know … I’d be so lost’

Today, math class is a thing of the past, but in navigating the adult world, Shawna is working with a new set of variables.

Like most people with FASDs, Shawna has a hard time connecting with the concept of actions and consequences.

“That’s Future Shawna’s problem,” she said, explaining her thought process in the moment. “Right now I’m having a good time.”

Money management is a big challenge since between direct deposit and debit cards, the dollars don’t exactly feel real -- and that makes them easy to spend.

“I have the money, I get paid, I’m like ‘Yes, I have all this money,’ and then I impulsively buy things, and then three days later I have no money,” she said.

By nature very social, open and trusting, Shawna has found that can make her vulnerable. After starting her new job, she spent a lot of time with a “party friend” who she eventually realized was hanging around because it was easy to get Shawna to pick up the tab when they went out.

“She was taking advantage of me,” Shawna said. “She was using me for my money. It was not the first time it’s happened.”

Things aren’t always easy, but it makes all the difference, she said, to know the reasons for her challenges.

“Because I have the diagnosis, I know that time management is difficult, I know money management is difficult, I know abstract concepts are difficult,” Shawna said. “I know I am impressionable, hence why I get taken advantage of. If I didn’t know those things about myself ... I’d be so lost.”

It’s not unusual for people with FASDs to grow to adulthood without a diagnosis. In Alaska, there’s only one diagnostic team -- in Kenai -- that sees adults, according to Pierce-Bulger, who said she knows a 53-year-old woman who was diagnosed with an FASD two years ago. It’s a life-changing moment for those adults, she added.

“It’s a relief to know ‘This is not me! It’s not my fault my brain got built different,’” Pierce-Bulger said.

For Shawna, who has known most of her life that FASD makes her brain work differently, that knowledge is “powerful” -- and it equips her with the perspective she needs to make it all work.

“I really take the good with the bad,” Shawna said. “It’s always going to be difficult. It’s something that I need to learn to live with, because I’m going to have this for the rest of my life. It’s not going away.”

Read Part 1: ‘He looks so normal’: When it comes to FASDs, there’s no such thing as predictability

Read Part 2: In search of a better conversation about alcohol and pregnancy

It is never too late to stop drinking. Because brain growth takes place throughout pregnancy, the sooner you stop drinking the safer it will be for you and your baby. If you’ve been drinking while pregnant, stop immediately and talk to your medical provider. If you are unable to stop, your medical provider can refer you to resources for help. This series is sponsored by LetsTalkFASDak, an FASD prevention initiative of the State of Alaska administered through the Alaska Mental Health Trust Authority. Learn more about alcohol, pregnancy, and what you can do to take charge of your health at LetsTalkFASDak.org.

This story was produced by the creative services department of the Anchorage Daily News in collaboration with LetsTalkFASDak. The ADN newsroom was not involved in its production.