Minnesota-based group fights stigma surrounding fetal alcohol spectrum disorders

NINA MOINI: Here's a statistic that may surprise you. An estimated 1% to 5% of school-aged children in the United States have fetal alcohol spectrum disorders, or developmental challenges caused by drinking alcohol during pregnancy. That's as many as 1 in 20 kids. And the numbers are higher for children in foster care. That's from the CDC, Centers for Disease Control and Prevention.

Now, a Minnesota based organization called Proof Alliance is working around the country to raise awareness for Fetal Alcohol Spectrum Disorders, or FASDs, and support people who are impacted by them. Joining me now is Dakota Morgan, a participant in the organization's youth programs who has an FASD. Hi, Dakota, thanks for being here.

DAKOTA MORGAN: Thank you for having me.

NINA MOINI: And also joining us, we're happy to have Proof Alliance's executive director, Mollie O'Brien. Thanks for being here as well, Mollie.

MOLLIE O'BRIEN: Thank you.

NINA MOINI: I want to start with you, Mollie, if I can. Would you mind kicking us off with just a basic explanation of what fetal alcohol spectrum disorders include and what impacts they may have on someone's lives? People may not know that it's a spectrum.

MOLLIE O'BRIEN: Absolutely. It's a lesser known brain-based disability that lasts a lifetime. It's more common than autism and Downs combined. So we're really trying to raise awareness about FASD and the opportunity to prevent prenatal alcohol exposure.

NINA MOINI: Mollie, why do you think that people don't know as much about FASDs, when you say they are, in fact, so common?

MOLLIE O'BRIEN: There's a lot of stigma surrounding FASD. And it makes it hard to talk about. There's also a lot of misinformation about drinking alcohol during pregnancy.

Sometimes someone might not know they're pregnant. Sometimes we might be misinformed by our physician. Sometimes we might have a chemical health challenge, which makes it really, really hard to just stop drinking during a pregnancy.

NINA MOINI: So, Dakota, would you like to tell us just a little bit about your own journey and maybe how and when you came to find out about your own FASD? Around what age were you?

DAKOTA MORGAN: Yeah, so I was 12 years old when I found out I was adopted. And so we weren't really sure what was going on. I was just really struggling in school. I was really struggling in just my personal life with my family members and a lot of aggression, a lot of anger, a lot of anxiety, a lot of things that I just didn't understand what was going on with me.

And so we just were on the hunt for what was going on. And when I was 12, I finally got the diagnosis.

NINA MOINI: And how, if you don't mind sharing, were you and your medical team and family able to determine that it was related to an FASD and not something else, perhaps?

DAKOTA MORGAN: There's a lot in my adoptive history that's unknown. But we did know my birth mother did admit to having drank while she was pregnant with me in the paperwork. And so I love her. I actually just got to meet her a couple of years ago, and so that's been a really amazing opportunity.

So no shame, no hatred or anything towards her. I love her so much. But I do have struggles because of that. And so it really came down to what the symptoms I was experiencing were and just the history of my biological mother drinking while she was pregnant with me.

NINA MOINI: Yeah. Thank you for sharing that. And Mollie, I understand you are hoping to bring more birth parents into your programming, correct? Could you talk about what that might look like and what some of the challenges there might be?

MOLLIE O'BRIEN: We are trying to find out, actually. We just put out a request for proposal and are bringing on some consultants to really help us understand the needs of biological mothers in this space and how we can best serve those needs.

NINA MOINI: Why was that helpful to you, Dakota? And how did this help you to-- learning about what was going on with you, how did that help you to formulate treatment for that or a plan for your life? Or what did it look like after that, because that's the positive part.

DAKOTA MORGAN: I think it really helped me get the services that I really, truly needed. In school, I struggled with reading. So I have dyslexia and a couple other learning disabilities. I have ADHD, so it was really hard for me to sit still.

And these are all comorbidities to an FASD. So a lot of people with an FASD may have another diagnosis that is directly related to having prenatal alcohol exposure. And so for me, it was really important, one, to get the services that I needed to thrive.

Now I have my bachelor's degree because of those services. I'm about to get my master's degree in a couple of years here. I just started. I'm engaged. I have beautiful relationships with the people around me.

And I think that all really ties back to having Proof Alliance in my life and having people in my life who now get to understand what is really and truly going on with me. And I'm really blessed in that my diagnosis was pretty young. A lot of people don't get their diagnosis until they're adults. And so they've gone their entire lives struggling.

And so I think, for me, it really came back to really getting to understand myself, getting to understand what I needed to thrive, but then also the relationship building piece. So at Proof Alliance, there are support groups and things for people like me who need to be connected to other people within FASD. That really helped me understand my own experience and the uniqueness of the disorder.

And I think we're pretty cool people, so getting to engage with my peers. And all my friends have some sort of neurodevelopmental disability now. So whether that's autism or an FASD, I get to be surrounded with people who are like me in a lot of ways. And so, yeah.

NINA MOINI: Amazing, Dakota. I'm so happy for you. That's all positive stuff. And it just goes to show that if people have resources and help, and it's so individualized as well, I'm sure.

Mollie, you're working with some state lawmakers, I understand, to try to get some legislation introduced. Would that, in your opinion, help people to get more access to the types of programming and things that helped Dakota so much and has helped others?

MOLLIE O'BRIEN: Exactly. We know that people with an FASD are at higher risk for things like homelessness, mental health conditions, higher health care utilization, struggling in school, so lower graduation rates, intersecting with the law. But we also know that early intervention, early diagnosis, and care and support, people with an FASD can thrive. And that's what we're seeing in Dakota, right?

So the more people across our state who can have access to our services, resources, supports, diagnosis, that improves outcomes for all, and improve outcomes, improves outcomes for our entire community. So yes, we are advocating for increased funding for basic program support so that we're able to expand programs to more communities across the state.

NINA MOINI: Would you tell me a little bit about what the resources are like in different areas across our state? Does it differ outstate Minnesota or the metro area? Is it easier in some places to gain access to programming?

MOLLIE O'BRIEN: Proof Alliance provides training, family support, prevention and public awareness. We have a specialized program called Our Children are Sacred, that is by and for the native community. And we also provide screening and diagnosis.

We can't be everywhere. But we know that we have peer navigators and community educators in local communities that can bring this to life in local communities. So this increase in funding will help us bring the work to life in those local communities.

NINA MOINI: Dakota, is there anything that you would want to say to someone who is living with an FASD or looking into that for them about what it means in your life and what it can mean for others?

DAKOTA MORGAN: So for me, I think, whenever I meet somebody else who was just recently diagnosed, I love to tell them that it can get a lot better with the proper supports. And it's OK to ask for help. I think that's something that every human being struggles with, like, you need help, but you don't know where to go or you don't know who to ask. And it's just like, just ask.

I think we have an obligation in our communities to make sure that everybody has the supports they need to thrive. And so I think it does get better. Your life may not look like my life. My life is very different than a lot of other people's that I've met. But it doesn't mean that your life can't be good for you. So I think that's what I would say.

NINA MOINI: Awesome. Dakota and Mollie, thank you so much for coming by today. We really appreciate you both.

MOLLIE O'BRIEN: Thank you so much.

DAKOTA MORGAN: Thank you for having us.

NINA MOINI: Thank you. Dakota Morgan is a youth program participant with the Minnesota-based organization Proof Alliance. And Mollie O'Brien is the group's executive director.