Understanding FASD: Fetal Alcohol Spectrum Disorders, with Rebecca Tillou | EDB 337
Self-advocate and author Rebecca Tillou shares the realities of life with FASD, and her journey towards getting a diagnosis at age 33.
Rebecca Tillou is a self-advocate of Fetal Alcohol Syndrome, which is under the umbrella Fetal Alcohol Spectrum Disorders. Since being diagnosed at the age of 33, she has become a tireless advocate raising awareness of this often misunderstood condition. She is the author of the auto-biographical book “Tenacity”, and the founder of the virtual 5K for FASD United.
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Note: the following transcription was automatically generated. Some imperfections may exist.
DR HACKIE REITMAN (HR):
Hi there. I’m Dr Hackie Reitman, welcome to another episode of Exploring Different Brains, and today I’m excited to have Rebecca Tilllou, who’s an author and self advocate for fetal alcohol spectrum disorder, and she’s going to tell us all about. Welcome, Rebecca,
REBECCA TILLOU (RT):
Thank you. I’m very honored to be here, so thank you for having me.
HR:
We’re honored to have you now. Why don’t you introduce yourself properly and a lot better than I do.
RT:
You did a good job. My name is Rebecca talou and I am a 44 year old living with a fetal alcohol spectrum disorder. I was adopted at one month out of New Jersey, and then I was diagnosed with fetal alcohol syndrome, which is under the FASD umbrella, at 34 years old. And so for 10 years, I’ve been a self advocate and spoken at conferences, and I did write a book called tenacity back in 2013 maybe 16. So yeah.
HR:
Well, that’s great. You’ve been a great role model and a great self advocate, teaching so many about FASD. What were the key symptoms? Tell us about FASD because, you know, many of us fetal alcohol spectrum disorder, we don’t have any experience with it. First of all, what’s its incidence?
RT:
So, um, the incidence is actually very high. It’s, um, it’s known as an invisible disability. So it occurs in one in 20 children in the United States have an FASD, whether diagnosed or undiagnosed. So that’s about at least one child in every classroom, and it’s known as an invisible disability, because only 7% of us present with the facial features which I had as a baby, and then they dissipated. So there’s the flat upper lip and the eyes can appear far apart. The distance between the corners of the eyes is shorter than normal, small head circumference. So those are just a few of the physical signs that can present so but they only present if the mom or if the mom drinks between certain days of pregnancy, like I days 18 to 21 days gestation, the facial features are forming in that window.
HR:
That’s the cause– mom drinking?
RT:
Yes. So fetal alcohol spectrum disorders is where a woman drinks during pregnancy, and the result can be permanent brain damage, usually in the frontal lobe, executive functioning is affected. But it’s not just a brain issue, it’s an entire Body Issue. Each one of us has something, has other issues, whether it be musculoskeletal, heart issues, vision, hearing, so there’s a lot of other stuff. There’s up to 427 comorbidities that can go with an FASD.
HR:
Now what’s what time period during pregnancy? Does the mother have to drink to get this to happen? Do they know that?
RT:
So that is the That’s the million dollar question. They will tell you, like the CDC and other doctors will tell you, there’s no safe, safe amount to drink during pregnancy. And if you are trying to get pregnant, not to drink either, because if you get pregnant and don’t know it from day one that that baby can be affected. So yeah, it’s just…
HR:
Tough stuff. Is there any co-occurrence with autism?
RT:
So that’s an interesting question. Many people that have an FASD are misdiagnosed as having autism or ADHD, and there are people though that have an FASD and a diagnosis of autism as well. So it depends on how they present, it depends on the doctors they’re seeing. I do not have the only diagnosis I have is fetal alcohol syndrome, which means I have the facial features. So I don’t I don’t have a diagnosis of autism or ADHD, but many do.
HR:
Tell us about your journey in getting diagnosed.
RT:
So my journey was interesting. When I was adopted at birth, my parents got this sheet of information that had my mom’s first name, date of birth, and then what she did, but it was out of New Jersey, so we there was no it wasn’t it was a closed adoption, so there’s no way we can find out who she was. I did find out, but that was years later. So on the sheet of paper, it said that she drank while pregnant, but then in parentheses, it said, but was not an alcoholic. So this was 1980 so when I was born, they said I was healthy, and then I came home at one month old, and I started getting really sick. I had bronchitis at least once a month, ear infections constantly, and I wasn’t eating. So I was diagnosed by my pediatrician as failure to thrive, and that can be also part of an FASD, all those things, failure to thrive and constantly sick. My pediatrician mentioned I may have fetal alcohol syndrome, but he didn’t know my birth mom and I had the facial features, but this was back in 1980 so they gave like a wait and see approach. When I got tubes in my ears at 18 months, I started to thrive and everything seemed cool. From there on out, I did well in school, which is surprising, but I it was a very structured environment, and I masked very well. So I was able to follow my friends and doing what they did and copying off their paper if I needed to to get the right answers. So I did really well in school. But what happened is, I grew up in a structured home as well, and then I went to college, but all my all my structures fell apart. So I didn’t have my parents anymore, I didn’t have the teacher helping me. I was on my own. Things started to fall apart. I started to have issues with schooling. I still did well in the classroom, but when I had a student teach, it fell apart because student teaching can be very abstract, and I don’t do well with that. So I got through grad school, and then I got married, and I had two kids, and that’s when things started to fall apart again, because I had all these all these things on me, all these things to do. I was a mom, I was worked full time. I was a wife, I had a house, and I couldn’t handle all of it. Multitasking became very hard. So after my second son, I went and searched for my birth mom, and I found out who she was, but she unfortunately died in 1999 but in 2013 when I found who she was, I found friends of hers who said that she was a chronic alcoholic. She was pregnant with me and drank the entire time, nobody knew she was pregnant. I think she did, but so given that information and the struggles I was having as the demands in life got more, I decided to get diagnosed with fetal or see if I could get a diagnosis of fetal alcohol, a fetal alcohol spectrum disorder. So what happened was my mom, my adoptive mom, she found a pamphlet. She got one in the mail from the adoption agency that I’m adopted from, and she called me up. This is in 2013 and she said, Well, they have this whole section on fasds, and knowing your mom drank for sure, now I think you might have this. So I took it upon myself to get a diagnosis. I’m in upstate New York, and there are only two diagnostic clinics for children, primarily in New York, Rochester and downstate New York. So I’m in upstate. So I googled who can diagnose FASD in the Albany, New York area, and I got the name of some pediatric geneticist. So I was 3033, years old at the time, so I messaged them, and their office called me and said the doctor is so interested, and she wants you to send her everything you have from. Your history and why you think you have an FASD, and send it in to us, and we’ll see if she wants to take you on. So I sent in baby photos and everything I knew from my history and struggles that I was having currently, and she called me the office called me back and said, Oh yeah, doctor, sure will take you. You’re her only adult patient ever, but she’s very excited to meet you. So I went and got diagnosed by a pediatric geneticist at the age of 34 I had to wait a little bit to get into it was crazy.
HR:
So you’re a reportable case. Tell us a little bit about if someone watching this thinks they might have fetal alcohol spectrum disorder, where do they go? What do they do? Say, I’m sitting here watching, I’m going, you know, you know, my mother was an alcoholic, and I’m having a little trouble with this, and that maybe, maybe this what’s going on.
RT:
So, if somebody does suspect that they do have an FASD, there is a wonderful there’s a lot of wonderful resources out there. One is FASD united. It’s a nonprofit that does research for FASD, and they actually have something called the Family navigator program. Anybody can call that number, and they have resources to every state about where people can go to get diagnosed, or to just talk to somebody about whether or not they think they have it. And FASD, their website, has tons of information on symptoms causes, which we know, but that’s, I mean, there’s so much stuff online under FASD united, that would be where I would tell people to go.
HR:
So go online. You go to FASD United?
RT:
Yep. Dot org.
HR:
There’ll be a wealth of information for you.
RT:
Yes absolutely, absolutely. Now, I will tell you that I don’t know, some doctors will not diagnose if they do not have proof from the birth mother that she drank and that that’s a whole nother can of worms, because up to 70 to 80% of kids in foster care have an FASD, and a lot of those kids, you cannot get in touch with their birth parent. So for them to get diagnosed is hard, if the doctor needs proof. So that’s a whole other can of worms for a different day. But some doctors will diagnose the doctor I had did. So it just depends.
HR:
And meanwhile, the fathers who are alcoholics, they don’t have anything to do with it. As it turns out, it’s only the mother?
RT:
I’ll tell you, I’ll say this, there is a lot of research going on right now that the Father may play a role in that I don’t know details, but the father is being researched. The father may play a role. If that father drinks wet when the woman gets pregnant, there might be some changes to the genetic makeup of that child. But there is a lot of research being done right now on that, and it has to do with epigenetics, I believe is part of it so but I don’t know much about it, but more to come, because they are doing a lot of research on that right now.
HR:
Interesting, very interesting. Yeah. Now tell us about the race that you helped get going here.
RT:
So I’ve been a runner for over 30 years. I started in ninth grade. I started running seriously, and then years later, COVID hit, and I, you know, you’re shut inside, and I got antsy, and it wasn’t running as much as I used to be. So I started running in 2020 I was on a podcast that’s no longer a podcast, but it was about FASD, and the lady asked me, What’s your five year plan? And I said, I want to do a race and give back to the community. And I told her I’d like to give back to FASD, just like to all the researchers and all that. So she said, Let’s make it happen. So FASD united and myself work together, and in 2021 run fast. Be. Became a thing. It was a virtual 5k where people could also join in little groups and run in person, run on their own. And it’s been going since. So this year was the fourth year. Do I want you the fourth year? I’m bad at math, so the fourth year running. So yeah, and it’s all over the United States.
HR:
That’s so cool. You have any idea how many participants are in it?
RT:
I had numbers, and I don’t remember, yeah, but there’s a lot. And the biggest outcome was in Rochester, because they have the clinic out there. And I went there. I go there every year to host it, and it’s amazing. It’s amazing to see the families that come together.
HR:
How can people learn more about you?
RT:
So I have a blog that’s called, I messed up the title and I’m not able to change it, but it’s called adulting with fasd.coms.com or no FASD, coms.com, adulting with FASD coms.com, if they look up, if they look up, quirking it, Q, U, I r, k, I N, G, I T, they should be able to find me, um, because that’s the subtitle of it, and it’s just about my journey with FASD and tips and tricks for people living with it and for caregivers. So there’s that. Um, I’m on Facebook FASD United. Um, I work with them a lot, just like as a volunteer. I was in a CDC video recently that just aired for FASD. So that’s out there. If they look up cdc.gov, yeah, they Google my name. I’m all over the place. So yeah.
HR:
Well, Rebecca Tilllou, you’re certainly doing a lot for the community. You’ve taught us a lot today about fetal alcohol spectrum disorder, and now it’s on our radar. Now we know what to look for. What’s the biggest single piece of advice you’d have for all of our viewers?
RT:
The biggest piece of advice, and this goes, I’ve said this for years, is that there’s such a stigma out there, and that is hindering people to get diagnosed, because you you hear fetal alcohol spectrum disorders, and then some people blame the mom, and the mom doesn’t want to be blamed. So there’s such stigma out there. If the stigma barrier can be broken, I think there can be more people diagnosed and more help for them. Can happen. People don’t know this, but 45% of pregnancies are unplanned, and a majority of women, I will not say, all a majority of women, do not drink to harm their child. Many don’t even know they’re pregnant until eight weeks. So I’ll throw that out there, and it’s just the stigma needs to go and the more we talk about it, I think the more we can get that broken down.
HR:
Rebecca, can you please tell us more about your book?
RT:
Absolutely so after I had my second son, and he is now 12, but I decided I wanted to search and find my birth family. So I searched, and it took me a year, but I did find my birth family, and I found out who my birth mom was, and after that, I met my birth family, some members. I did not meet my birth mother. She had passed away already, but after all the meeting, meeting greets, I was able to write a book. It’s a memoir. It’s called “Tenacity”, and it goes into my search and reunion and how I searched, because it was a closed adoption. And one thing with FASD, I will mention is some of us perseverate, which means we do things to an extreme and don’t stop until we get what we want. So that’s how I found her, because I just kept looking and looking and looking and every crack and crevice I could so it talks about that, and also about my diagnosis with FASD.
HR:
Very interesting. What is the life expectancy with FASD?
RT:
So the life expectancy is actually at. Average, if you do Google it, you will find some old sites that say it’s like 33-34 years old. That is not correct. Where that comes from is some people with an FASD struggle with drug use, addiction, poverty, being in jail, and that’s due to our brains and the impulsivity piece of it that we can’t control things all the time. So it it’s an average life expectancy, especially if you have the supports throughout your life, family, friends, doctors.
HR:
And what is your feeling about brain issues associated with the disorder?
RT:
Um brain issues with FASD?
HR:
Yeah, like you. You you feel — based on your experience and your knowledge — that you’re just like everybody else.
RT:
Yeah, so I do feel that way, but since I got diagnosed, I know I have differences, but I think everybody is different in some way, so I have used my brain differences to my advantage. So I can be very impulsive, which isn’t the best, but you know, I mean, it’s fun when I’m with my with my kids and I just decided to do something fun, you know? So everything has its place. So I I know I’m different, but I’m okay with it.
HR:
They’re getting kind of perceived bad break and turn it into a good break.
RT:
Exactly, yep, absolutely.
HR:
Rebecca, did getting your diagnosis of FASD change the way you looked at your own family and looked at your own children?
RT:
So it did in the it did in the way that I know that multitasking is difficult for me, in the way that I handle my kids and their care. They’re very busy, so I know my brain and what it can handle. So my husband is actually a great support, and we split what has to be done so I am not overwhelmed, which is great. Mothering can be very tough, especially when you have a brain disorder, and things creep up on you, like over being overwhelmed, and the kids don’t always understand that. So one way that I have tried to help with that is that my kids have known since they’re very young and could understand that my brain works differently, and I have never hid from my kids that I have FASD, and actually, my older son has done two reports for school on FASD.
HR:
So yeah, yeah, tell us some more about your kids.
RT:
So I have a seventh grader who’s 12 and an 11th grader who is 16, almost 17.
HR:
You got your hands full.
RT:
Oh yes. Oh yeah. They’re two boys, and actually they are both really into music and theater, and they’re incredible at both incredible and they are they’re amazing kids, and they’re very they’re just very kind and very funny, and they’re very supportive and very patient with me. So it’s awesome. So they’re good kids.
HR:
Very cool. Well, Rebecca Tilllou, it’s been such a pleasure to talk to you. Very educational. Very much. So, and you know, fetal alcohol spectrum disorder is big. It’s totally preventable, and you’ve educated us a lot today. Thank you so much, and we hope you’ll come back again soon.
RT:
Absolutely thank you for having me. Thank.
