Fetal alcohol spectrum disorder, or FASD, is caused when a mother drinks alcohol while pregnant. Nitsan Gaibel talks with Adrienne Bashista, founder of “Families affected by Fetal Alcohol Spectrum Disorder.” It is an organization that seeks to give voice to families of individuals impacted by FASD and offers support and guidance to families of individuals who have had alcohol exposure in utero. Adrienne uses a special program and training for parents and professionals that teaches about the impact of alcohol on the developing brain.
Nitsan: Adrienne, your mission is around FAS. What is it?
Adrienne Bashista: We are not talking about just Fetal Alcohol Syndrome, or FAS, because that’s just one of the diagnoses that happens when a baby is exposed to alcohol in utero, but we are talking about all the Fetal Alcohol Spectrum Disorders, which is actually several different medical diagnoses. It’s a spectrum disorder because alcohol damages the brain down to the cellular level while the brain is developing in the utero. A lot of times you will see specific behaviors of people with Fetal Alcohol like difficulties with memory and executive functioning which include organization, time management, and prioritization. You will see problems with processing speed, or how fast the brain processes information or how fast the brain processes sound, you will see people who have differing reactions to sensory input, so some people may be over sensitive to things like loud noises, and some people will be under sensitive, and some people may have over in sensitivity at the same time. So you will see a wide variety of differences in the way the fetal alcohol exposure will impact the way the brain works. It is possible Alcohol exposure can also impact IQ, but in fact most people with an FASD have an IQ within the normal range, meaning above 70, and it’s also very possible for a person with FASD to have a high IQ but still have brain damage that impacts their everyday living.
Nitsan: Are you connected to this, personally?
Adrienne Bashista: Yes, my son who is, who just turned twelve last week has a Fetal Alcohol Spectrum Disorder.
Nitsan: And I’m guessing you adopted your son?
Adrienne Bashista: Yeah, he is adopted.
Nitsan: What are the kinds of difficulties you are your son had faced as a result of this?
Adrienne Bashista: Well, the main thing, I will say the number one thing, that has caused difficulties with our son, was not understanding what FASD was. And it wasn’t just me and my husband who didn’t understand it what it was– it was every single professional that we took him to! My son has had behavior differences since he was two years old, and we took him to I think the last count was, thirty-two different professionals, psychiatrist, child psychiatrist, developmental pediatrician, international adoption specialist, therapists, occupational therapists… and every single person we went to for help we would have no clue what his problem was. When he was very small, he kind of experienced the world by banging into things. Then later he’d seem very oppositional and out of control and he had a lot of difficulty in school. I would say to the doctors: “I know that he had alcohol exposure in the utero, do you think that’s why he is doing it?” And every single professional we took him to said, “Well that may be why he is doing it. That may be why he acts like this, but it doesn’t matter in terms of how we professionals will treat him.” But what I discovered later in his life, when he was eight and half, was that it matters very much. Fetal alcohol exposure causes brain damage. You can’t treat individuals with fetal alcohol exposure with behavior management programs. You have to acknowledge that their brains are different. So, that was the biggest difficulty: the lack of knowledge and lack of support and the lack of understanding, not only in our family but in the professional community, around the way that his brain works.
Nitsan: What was the turning point?
Adrienne Bashista: He was diagnosed when he was about nine and around that time I went to a training with Diane Malbin. She is the trainer in the neuro-behavioral model of understanding FASD, or the brain-based approach to FASD. It helps us understand the impact alcohol had on his developing brain, and made us see his difficulties as a result of brain damage versus things he was choosing to do. It’s completely changed the way we interact with him. And once we changed the way we interacted with him, our expectations of him, and our interpretations of his behaviors, it completely changed the mood and emotions in our family. It’s still hard for him and for us sometimes. His biggest difficulty is probably his dysmaturity. He is developmentally about six, although chronologically 12 and he wants to do what he sees other kids his age are doing but he can’t navigate that scene socially.
Nitsan: Tell me a little bit about the course you’ve doing for parents of FASD children.
Adrienne Bashista: The training that I do is based on the FASCETS neuro behavioral model. I have been trained by and mentored by Diane Malbin who has been working in the field of fetal alcohol for twenty years. I use her curriculum. I went to her training to help my family and I found it so helpful that I became a trainer. Forming FAFASD, our parent organization, has been to support the trainings but also fill a huge whole I see in the FASD world: parent support. The more I talk to parents and other caregivers and professionals to work with the fetal alcohol population, the more I realize that their experience was my own experience, which is: not knowing where to go, not knowing what to do, and counting on people who didn’t understand.
Nitsan: Was there a particular incident that impacted you so you said: “this means I’ve just got to do it by myself!”
Adrienne Bashista: First thing was wanting to do the trainings. The next step was realizing that it will be more impactful if we had an organization behind it, a parent organization.
But the thing that drives the training and the thing that drives this organization is based in research about fetal alcohol. There are a lot of statistical bad outcomes out there about what happens to fetal alcohol children who became adults. I mean, it’s statistically true that the majority of them do have institutional involvement. Something like 70% end up in jail, or in a mental institution or in substance abuse treatment. Only a few, a little more than half, graduated high school.
Nitsan: That is not an encouraging statistic.
Adrienne Bashista: No, is not. But it’s based on a history of misunderstanding the behaviors of people with FASDs as being on-purpose and intentional. Anne Streissguth, a researcher, looked at around four hundred adults and young adults who had fetal alcoholic exposure and what she discovered was that peoplewith FASD had primary characteristics of brain damage which impacted things that I mentioned earlier, things like memory, executive functioning, processing speed, developmental dysmaturity, things like that. And then some of those people also had what she called secondary characteristics, which are things like anxiety, depression, aggression, self-harm.
Nitsan: That must be an awful challenge to the parents.
Adrienne Bashista: Yes. But research has shown that the most important intervention for people with fetal alcohol to prevent the worst outcome, is family support, and family education. That’s what research shows.
Nitsan: You made sure that you got trained in order to show your experience and help so many other people?
Adrienne Bashista: Yes.
Nitsan: Are you one of the few people who is taking that research and applying it?
Adrienne Bashista: Not exactly. I might one of the few right now who is doing it for the public, though. Other people were in my training cohort but they were professionals in the field. They work in areas like crisis, or behavior management support, or residential treatments. They took the same training as I did but I am doing it for the general public.
Nitsan: Ok. That’s really the unique contribution that you are making to straightening out the people who otherwise wouldn’t get it. You are training people to get…what result?
Adrienne Bashista: The whole idea is to help understand fetal alcohol as brain damage so that we can change our own responses to accommodate their disability and change the environment so they’re successful. This actually helps change and prevent unwanted behaviors.
Nitsan: What are you saying is, that you have specific exercises that we, as parents of a child with FASD can apply?
Adrienne Bashista: Yes.
Nitsan: And you can tell us what to aim for?
Adrienne Bashista: Not really. You will be determining what you aim for. Because every single person with Fetal alcoholic is different. You know your child. The tools that we train parents in really need to be individualized.
Nitsan: Thank you Adrienne, for the wonderful support you give to parents of children with FASD.
To explore resources and seminars that Adrienne has assembled for parents of FASD children, visit http://fafasd.org/