Fetal Alcohol Spectrum Disorder

[Upbeat Guitar Music]

Mike: Welcome everybody. This is Avoiding the Addiction Affliction, brought to you by Westwords Consulting, the Kenosha County Substance Use Disorder Coalition, and by a grant from the State of Wisconsin's Dose of Reality: Real Talks reminding you that opioids are powerful drugs and that one pill can kill.

Mike: I'm Mike McGowan.

Mike: Fetal Alcohol Spectrum Disorder, FASD, is often overlooked, misdiagnosed, and certainly understudied. Individuals with FASD and their families also face persistent stigma, negative stereotypes and harmful biases due to public misunderstandings. We're gonna talk about the disorder with a returning favorite guest, Guida Brown.

Mike: Guida is the principal for Guided by Guida and serves as community relations consultant for the US Drug Testing Laboratories in Des Plaines, Illinois. She also serves as president of the Board of Orchids FASD Services Wisconsin, the Wisconsin affiliate for FASD United. Guida's a certified substance abuse counselor for the state of Wisconsin and a fetal alcohol spectrum disorder trainer.

Mike: She is also, and this has nothing to do with our podcast today, a Kenosha Wisconsin County Board Supervisor. Thanks Guida for joining us. Good to see you again.

Guida: Thanks for having me Mike.

Mike: Yeah for those who alright we can start there. What is fetal alcohol spectrum disorder?

Mike: Since everybody has an idea about it, but I bet there's more than just the ideas in our head.

Guida: Wow. Yeah. So typically when we think about fetal alcohol spectrum disorders, FASDs, we think of fetal alcohol syndrome. And so you and I have been in this field long enough that we used to talk about fetal alcohol syndrome and fetal alcohol effects, right? So fetal alcohol syndrome was what we would call the full blown fetal alcohol... The full blown of the spectrum disorder. And that is what, when people, when you say some, anything about FASD they're like, oh, it's FAS, but it's not. So fetal alcohol syndrome has very clear facial differences. And typically a person who has fetal alcohol syndrome is visually different. So we look at that person, we go, oh, there's something a little off by that. They have a flatter midface. They don't have the philtrum. I love talking about the philtrum 'cause everybody does this. So these lines between your nose and your top lip. Those don't typically exist for a person who has fetal alcohol syndrome. They also have a very thin upper lip. And so there I can tell you all sorts of stories about even misdiagnosis on that. But the fact of the matter is that's only 10% of the population with an FASD. So if you're looking for something and that looking can be a lot of other things too.

Guida: So there's not just one thing that you can look at a person and go, yep, there you go. That's fetal alcohol syndrome. So it gets lost. And then when you add the spectrum disorder to it, the neurodevelopmental problems. There's a umbrella that shows you the different, there are about five different things underneath it.

Guida: And when you start adding all those other things to it, you realize there's no good diag, there's no easy diagnosis, there's no ability to just look at somebody and go, oh, that must be fetal alcohol syndrome.

Mike: Yeah. When you said 10% have the visual characteristics. I think what most people think when they think of this, but I was reading when we were gonna do this, it's estimated four to 5% of children born have some form of the disorder, which I should not be surprising given how prevalent alcohol consumption is. But that's a lot of kids.

Guida: It is. So when I worked at the Hope Council, I was doing a presentation in our conference room and we had a program called I Am Special. And our children in the program would draw pictures and what have you.

Guida: And one of the pictures was called, we called it the flying the flying frying pan. And it was a picture that a child had drawn of a flying frying pan, a frying pan flying through the, because dad got mad, dad was drunk, got mad at mom, and threw it through the air.

Mike: Wow.

Guida: And the person running the program had written narrative for the child.

Guida: The child was too small to write the narrative, him or herself. And so we're talking about these pictures on the walls and I said, these were done by children of addiction. And I said, I grew up, I was my father had alcoholism. I too am a child of addiction.

Guida: And a person looked at me and said, well you don't look like it.

Mike: Interesting.

Guida: (laughs) What? I don't know what that means. And I mean it literally like at that in the moment, I was like. What, and then I think what she was saying is, you don't look like you've got fetal alcohol syndrome. And I was like, oh yeah, no, I don't. But that doesn't mean I'm not a child of addiction. And so you're right.

Guida: Again, we're missing it. It's about one in 20. So we always say every classroom has a child who has an FASD, right. One in 20. And then I always think. Then what happens? Because those folks grow up, right?

Mike: Yeah.

Guida: So one in 20 is probably low. That percentage is probably low.

Guida: It's probably, I would say it's at least one in 10, given our knowledge. And it's gonna depend too, right? If you're looking at the International Statistics versus the National Statistics versus Wisconsin Statistics, those numbers are gonna be vastly different.

Mike: I've done this for a very long time, a nd when I work in schools or programs where young women are pregnant, they oftentimes say I quit drinking when I got pregnant.

Mike: That's not true though, generally, or I quit using. What they really mean Guida, I think is, I quit using when I found out I was pregnant. And there's a risk all the way through pregnancy with alcohol, right?

Guida: There absolutely is with most drugs, honestly. But alcohol is the most poisonous. Alcohol is a toxin, and so it's the most poisonous, and yet it's the most prevalent.

Guida: And people think that, yeah, if I quit drinking when I find out I'm pregnant, then I'm gonna be fine. But we know that women typically don't even know they're pregnant until six weeks in.

Guida: And we believe, we're not positive, we believe that first period is the most dangerous time. Now we know that it makes a difference if you stop drinking, that is beneficial to your newborn. So it doesn't, it's not I was drinking so I might as well just keep drinking. That is nonsense. But again, there's some great information out there about a chart of what we think, how the baby is developing and how that's going to affect these things.

Guida: And so that the eyes and the philtrum and that stuff early on are affected in the stage of.

Mike: First trimester.

Guida: The formation stage, and then as it goes along, those primary issues become second. Become less so the eyes are already formed. Again, I'm not recommending that anybody ever drink during pregnancy, but if you absolutely knew the day you got pregnant and you didn't drink, then you drink at the end of it, you're gonna do less damage.

Guida: Because of how the baby is formed. But in the beginning there's so much going on and I always think about this from the perspective of. We know we shouldn't eat sushi if we're pregnant. We know we shouldn't eat raw eggs if we're pregnant. We know we shouldn't eat cold cuts if we're pregnant.

Guida: And yet we're still talking about this. This was diagnosed in 1973, 1974. It is utterly utterly ridiculous that this isn't known by everybody. Everyone in the world should say, yeah, no I don't, I can't drink. You can't drink when you're pregnant. And John Quinones, the What Would You Do?

Guida: There was this great episode of a woman who was seriously like nine months pregnant, bellying up to the bar. People were buying her shots, she was drinking and he wanted to know what would people do about it. And I'm like, I don't even know what I'd do. I would I always like to send my husband.

Guida: Honey, you need to go talk to her.

Mike: Oh I've known you a long time. I'm almost certain that you'd do something as I would. My daughter is always saying to me when we would go out, you're not working, you're not working. It's I can't, it's not like a blues brother all the time. I'm on a mission from God.

Guida: Yeah. Yeah. Exactly.

Mike: On your orchids website, which we'll link on the podcast blurb as well as other resources for FASD, it says that many folks with FASD experience, lifelong functional, behavioral, mental health difficulties. I think we're talking about again, a spectrum, right?

Mike: In the same way autism. We've talked to so many people Guida here who have disorders that got diagnosed later because we had such a narrow definition years ago, and now we broaden the definition to go well wait. So it stays with you, right?

Guida: It does, yeah. Lifetime. It's brain damage. It's brain damage.

Guida: Again, alcohol is a toxin. Pregnant women drinking alcohol causes a negative reaction in the baby, and it is brain damage. That is absolutely what it is. Now, I recently received a diagnosis myself for neurodevelopmental prenatal alcohol exposure. I was born in 1965.

Guida: My mom flat out told me she drank when she was pregnant with me because we didn't know any better, right? So I wasn't surprised by any stretch of the imagination. I am number seven in live births, number eight in births in my family. There was a baby who was still born early on, but so seven in live birth.

Guida: We also know that there's gravidity aspect to this. So if a person drinks in every pregnancy, each subsequent pregnancy has more risk. So I'm number seven in live births. Does my sister have it? I don't know. She didn't get a diagnosis. I did. We think she probably has an FASD. She's got some other issues that I don't have that would lead us to believe that those things correlate.

Guida: But the reason I had gotten a diagnosis was actually. I haven't talked to Rebecca about this yet, but I am going to tell Rebecca that...

Mike: Who is Rebecca?

Guida: Rebecca is a person who is an advocate, a self-advocate for people with fetal alcohol spectrum disorders or fetal alcohol syndrome. And I met her at a conference and I was (laughs) in the elevator with her and she was so effervescent and I looked at her and I thought.

Guida: She is one of my people. (laughs) And then I thought more about it and I thought, I wonder if when people meet me, they think like I'm their Rebecca. And I was like, wow! And so this was a fetal alcohol conference and I learned a lot of stuff and then I went back and I learned more stuff and. Like you said, people are getting diagnosed later and later.

Guida: So I had met this man who was a filmmaker and he was like in his forties and he got diagnosed and I said, and I went up to him. I said, why? Why would you bother? Why would you bother getting diagnosed? And he said, I was making this film. And my wife he said, I kept seeing these people and I was saying, yep, that sounds like me.

Guida: Yep, that sounds like me. Yep, that sounds like me. He said, and then I finally, I went to my wife and she was like yeah, that sure sounds like you. And then he got diagnosed and yeah, it was him. And so the third year of this conference I met somebody from the Fusion Center Network deck com.

Guida: And I talked to her about why I thought I might have this. And there are other things, like I have the worst myopia known to anybody I've ever met. I am a minus 19 if that means anything to anybody. So I wear contact lenses. I'm a minus 19. People are like, oh my gosh, my eyes are so bad. I'm a minus four.

Guida: I'm like, oh, you're funny. And what happened to me is my vision left me in third grade. One day I could see, and the next day I couldn't see. That was it. It was that quick, that fast. I have a really peculiarly small head. So when I have to wear a helmet or I know Mike's looking at me like, what?

Mike: I don't think you do, but.

Guida: I know, but I do. So my husband and I went on a vacation. First, I think I was with my niece and we went hang gliding and they put a helmet on me and they're like, yep, no. And I'm like, (laughs) my head's like bopping around in it. And I was like, no. (laughs) And they go, oh, you need a smaller one.

Guida: I go yeah. And then my husband and I went on, we were in Prague and Czechoslovakia and he, same thing. I. They put the helmet on me and I was like I need a smaller one. So I I almost always have to wear a youth helmet. I can't buy hats that fit me. I, they say one size fits all for sun hats for women.

Guida: I'm like, no, it doesn't fit me. So there were these things that had happened that I was like, that is just really weird. And then you start thinking about, and I know that mom drank, I know that I was a surprise baby, and I know this because my mom always talked about my sister being a surprise.

Guida: My sister, three years older than I am was a, my mom called her a birth control baby. She was a birth control baby, and it was when birth control was new. And so my mom was on birth control and thought, oh, I'm not gonna get pregnant. And she had my sister and I thought that was just hysterical until I realized I wasn't really wanted either. (laughs)

Mike: Yeah, you came after that so.

Guida: Yeah. And again, my mom told me that she had drank when she was pregnant. They didn't know any better. They absolutely didn't know any better. I have not great math skills. I have zero abstract thinking skills. My supervisor at the lab, we were in a room and he said.

Guida: How many people do you think are in this room? And I said, oh yeah, gun to my head. I'd say about 200. He goes, 800. (laughs) I was like, alright.

Mike: Let me stop you for a sec. 'Cause how, like you, there's a bunch of us right in this age group. Most boomers I would think, right? There's pictures of me.

Mike: You can't really see me yet, but my mom is pregnant and she's got a beer in one hand and a cigarette in the other.

Mike: And I bet you there's tons of us like that. So two questions. One, how did you get diagnosed, and second, how does that diagnosis differ from other disorders? Like how did you pin it to FASD?

Guida: Because I'm not autistic. Because I, because my emotion, you know, I don't have, so I, it, I think it's probably, and this is a concern across the board, you get diagnosed with what you know. How many people have an autism diagnosis because their doctor knows how to diagnose autism?

Mike: We've talked about that here.

Guida: Yeah.

Mike: Same with mental health. Same with schizophrenia, same with everything.

Guida: Exactly. Exactly. And that's why I got diagnosed. That's how I got diagnosed. I met Elizabeth Cleveland from the Fusion Network and I talked to her and she was like, yeah, we can. We can do a diagnosis, and it wasn't to get money or to prove I've got some sort of a disability or anything, but it was really to get an answer like, why am I so bad at math?

Guida: Why is my head so small? Why, you know, those kinds of things that sort of just lay in the back of your head. I now having gotten my 16 page report, I'm like. Ooh maybe I didn't wanna know. My husband read it and he said none of that was really a surprise to me. You have terrible time management skills.

Guida: And I was like, do I? (laughs) And he is you do. I think I can do four things in the amount of time that really you a human being can only do one thing. So I'm late for everything. I'm always late because I'm, because I think, oh, I had more time. And so there were things like that, that, but we adapt and so there were so many things.

Guida: I think if I told most people I've got this disorder, they'd be like, no you don't. I've known you my whole life and you seem normal or you seem whatever. My sister, she said, you cannot think ahead to save your life. And I'm like. You're right. (laughs) I don't bother to have you when I was in high school.

Guida: This is just so weird to me. When I was in high school, my teacher, my literature teacher would have us reading books and try to figure out why are there so many cats in Wuthering Heights? I'm making it up. I have no idea what book has a lot of cats in it. And I'm like. I don't know, because Emily Bronte liked cats.

Guida: Like I have zero, zero abstract thinking ability. So my granddaughter, I help my granddaughter a lot with her homework or her reading and the, what does this mean? And I'm like, sorry. Great Gatsby. Great Gatsby is loaded with that sort of abstract language and yellow means this.

Guida: And I am like, sorry sweetheart, you're on your own. I have no idea what yellow means. I don't get it. I don't and I just think everyone's like I am, which I think is the other problem, who does understand that unless your entire focus is on literature. I used to tell my high school teacher, I'm gonna write a book that has just all sorts of things in it that people think mean something else, but they're not gonna mean anything else because it's stupid.

Guida: Because why would she have cats in? How would I think that cats mean anything but she liked cats. How would I think that the color yellow meant anything except that he drove a yellow car? Like I just so never get it.

Mike: I that I'm laughing because I actually had this discussion with a college professor about that.

Mike: We've never talked about that very thing. I raised my hand and I said wait a minute. When the cat jumps on a mantle piece and hops over the clock, are you telling me that F Scott Fitzgerald bought i'm gonna have the cat do that because what it really means is this, or did he just do it and then everybody's interpreting it.

Mike: But so some similar stuff.

Guida: Yeah.

Mike: How do people, it explains a lot, right? When you, did you have an aha oh, okay. Is it helpful to know or is it irrelevant to know,

Guida: I'm not gonna tell you I haven't used it as a crutch when I get in arguments with my husband.

Mike: Oh, lately?

Guida: (Nods)

Mike: Is it oh, great. Terrific.

Guida: Oh my God. I'm like, I don't know. It must be my FASD.

Mike: Great. People had, can use stuff, right?

Guida: Yeah. No, to me it was really just an answer. It was just more of a. Okay, that makes sense. Now what do I do? So I will say there are some things where I think, again, I think I manage my emotions well, and then I look at other people and I think maybe I don't manage 'em as well as I should as a grown adult.

Guida: But then, but I don't know. I don't know. And today I was actually writing a blog about that had something about ACEs, Adverse Childhood Experiences. And so many of these things also overlap.

Mike: That's where I was going. Yeah.

Guida: You've got the autism, you've got the ACEs. And I'm like maybe a lot of what's happened to me the dysregulation, my emotional dysregulation, that was from when I was a child through my thirties, maybe that had more to do with ACEs, my separation anxiety.

Guida: I know for. I had the worst separation. I had something I thought my husband wasn't gonna show up to our wedding. Like I was like today's the day he leaves me. Because when I was five, my brother died and my parents told us, my sister and me, that he had died. And then we never talked about him again.

Guida: Ever. And so when my mom would leave me, I would absolutely lose my mind because I thought that's what happens. I'm five years old and then I'm eight years old and I'm 10 years old, and I thought when people leave, they just don't come back. And I carried that into my thirties. Into my thirties, until I finally went to a training on children with grief.

Guida: And I was like. (smacks forehead) Oh my gosh. I wish somebody had explained that to me when I was little. Maybe not when I was five, but 'cause I also wish we had talked about my brother so that I wouldn't have had those experiences. So again, so much of this overlaps and it wasn't like I was thinking I would go to the eye doctor and he would say, I wish I could.

Guida: I said why am my eyes so bad? And he's I don't know. It could be a lot of things. Could be blah. He's were your parents' eyes bad? Nope. Nope. No one in my family has eyes as bad as I do. My parents didn't even wear glasses and I said, could it have been caused by alcohol use? No. And he said, alcohol use for my mom.

Guida: And he's oh yeah. And he said, I wish I could give you...

Mike: A definitive.

Guida: A piece of paper that would get you some money or something. And I said no. I'm not even looking for money. I'm looking for something definitive. I'm looking for something that says. This is why this happened. And so from that perspective, yes.

Guida: But also no, because I feel like, I don't know. Again, maybe some of it is just my personality and some of it is just my, and I'm never gonna I jokingly say I use it with a crutch for with David, but I'm never gonna use it as a crutch and be like I don't know. (raises hands in air) That's just how I am.

Mike: Yeah.

Guida: But that's always been my fallback too. I don't want anyone ever saying you know how Guida is. But then I think about it and I think well, that is how Guida is, right?

Mike: I've been to a lot of doctors, like a lot of people over my lifetime. You can understand why it's underdiagnosed, because I've never, ever been asked by any doctor on any forms.

Mike: Did your mom to your knowledge, drink during the pregnancy with you? And so it doesn't even lead to that conversation. So talk about orchids. And what you all do and the mission of the larger group FASD United.

Guida: Yes. So we're really trying to get people to understand that this is a prevalent disorder.

Guida: The FASD United has these shirts made that say rarely diagnosed, but not rare. Or some, something like that. The words might be off, it's not a rare disorder. It's not rare at all. It's one of the most prevalent, I've written blogs about it. It's one of the most prevalent childhood experiences, childhood disorders that could be tagged.

Guida: And it's not. And it's because we don't talk about consumption. Even when we ask, we don't get accurate information.

Guida: Hospital systems there's a lot of bias that goes into who gets tested and whether or not anyone gets tested. And so if I just ask you, have you drank during this pregnancy?

Guida: And you say, no, then that's the end of it. Unless you've got some other really concerning behaviors or I smell alcohol on you, which is hugely problematic. There are, there's a really good umbilical cord tissue test that will tell you if somebody's been drinking in that last trimester at birth, and it's a great test.

Guida: And my issue with it is not universal testing, right? We know that in Wisconsin we test 42, something like that, 42 different childhood disorders at birth. And this to me should be one more, not because it's going to, cure anything, but at least we get the acknowledgement of it. And I think that's one of the things too.

Guida: There is no cure. There is absolutely no cure. And so if we don't have a cure, we don't talk about it. That's with the opioid issues, we knew exactly what to do when babies were born with neonatal abstinence syndrome. We knew exactly how to help them. So we did something about it. We started testing, we started treating, we started doing this other stuff with FASDs.

Guida: We don't know what to do. We are learning. We know that choline makes a positive impact on a newborn or even when mom is pregnant and carrying the baby. But we have done a terrible job of getting that word out. And so back to your original question, sorry. Orchids and FASD United are really trying to get that word out.

Guida: We don't have great diagnostics in Wisconsin. We used to have a center, and then we talk about the chicken and egg argument. What came first? Did the people stop getting diagnosed and that's why the center doesn't exist anymore? Or does the center not exist anymore and that's why people stop getting diagnosed?

Mike: I think we have a problem with that because there's two groups. Women who tend to drink a little bit more. One, those with mental health issues in their pregnancy, their drinking increases. And second, and this is devastating at this time period, are those without access to healthcare, which is rural.

Mike: They're rural and poor and we're seeing that full flour and they tend to drink more. If nobody's seen them, it's hard to access any testing or help at all.

Guida: And then because particularly with the rural and poor is that, it could be for either, but for the rural and the poor if I didn't already get prenatal care.

Guida: And then I come in, they're gonna get tagged more often. Oh, there's something wrong with them. They didn't get prenatal care. So they're the ones who then get their children taken away from them because they have a positive test or because this happened or that happened, and so it ends up being a really vicious cycle of not treating the whole person, not treating the condition itself, but treating the characteristics of it. And then, making the whole thing so much worse.

Mike: Your website has, I really liked some of the website it information by topic. There was a great pull down everything from, behavioral challenges and solutions, screening and diagnosis.

Mike: I like that. So there's just helpful stuff if you just research it.

Guida: There is, there's a ton of stuff on our website. And it, but it is good. It's good information. And if anyone's even thinking, again, to me, we go to the like. I tend to be I call myself a hypochondriac, but I'm a hypochondriac who doesn't actually do anything about any health condition.

Guida: So I don't know what that makes me, but, you think, oh my gosh, I think I've got sciatica, whatever. And then I'm like, it goes away. And I was fine. If it looks like a dog and it barks like a dog, it's a dog, right? FASDs are the dog in the room. It's not some hybrid hyena crossed with a zebra.

Guida: It's not some rare thing, and so if you start thinking about all the people you know or. All the things that somebody has gone through and you think, there might be more to this. It's not just poor choices. There's so much information on children with FASDs who don't have impulse control and don't have emotional regulation, and don't have executive functioning and all of this stuff.

Guida: And again, they don't just stop. It doesn't stop. It's brain damage that lasts for the rest of their lives. And so this brain damage just moves up and maybe it mitigates a little bit or maybe like me, we figure out ways to get around it. There are people who can't wake up to an alarm clock because they just can't, they can't.

Guida: That sort of management is not feasible to them. So we talk about getting an alarm clock and a watch that buzzes, so that will wake you up better. There are things that people know how to do, but unfortunately they're doing it on their own. And FASD United and Orchids in Wisconsin is really trying to get that message out to people so they don't feel like they're alone, that there are resources out there for them.

Guida: And even if you don't have a diagnosis, again a diagnosis is possible. It's harder than it should be, absolutely harder than it should be, but there are resources available to help people and to make them feel like they've got some support.

Mike: I'm sure people heard stuff they never knew. So I'll let you go with this.

Mike: Finish this sentence. With support, education, and understanding...

Guida: The effects of fetal alcohol exposure can be mitigated for everybody.

Mike: Oh, I like that.

Guida: Did you expect me to say that? (laughs)

Mike: No. I like that. I, that's a great way to end it.

Guida: Yeah.

Mike: I think that's a mission statement in itself, right?

Guida: Yeah. There you go.

Mike: And we told you all, there's links to Orchids, Guided by Guida.

Mike: Great blog, wonderful blog. You'll nod your head a lot and you'll disagree with her sometimes. And she you take people, right? You, people can write you.

Guida: Oh, I love it. Yes. Absolutely. Absolutely.

Mike: And guess what? She will write you back.

Guida: Yeah.

Mike: And there's other FASD resources attached to the podcast.

Mike: Guida thanks for sharing, being so open and sharing your experience, and especially your expertise, we really appreciate it.

Mike: For those of you listening, watching, stay safe, stay healthy, stay informed.