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FASD 101

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This session is about general information for providers and families. My name is Kathy Paxton. Today we’re going to understand the teratogenic effects of alcohol and supportive culture. We’re going to learn about FASD including terminology, facts and effects on the body and brain. We also want to understand the primary and secondary disabilities resulting from Fetal Alcohol Spectrum Disorders. We also want to learn about strategies and recommendations for problems associated with FASD.

When we think about national statistics, there are a few that I want you to pay close attention to. FASD is estimated to occur in 1 and 100 live births. This is the full spectrum. That’s about 40,000 per year. We spend up to 5.4 billion annually in the United States with regard to treatment and interventions with children and families with Fetal Alcohol Spectrum Disorders. One FASD birth may equal a lifetime health cost of over $860,000 but it can actually be up to $4.2 million based on how much the child is involved medically.

You know, we think this is a simple lesson, but it’s a really hard lesson to learn….mom drinks, baby drinks.

Why it’s important for you to know about FASD...there’s not a lot of things in this life that we have control over but this is something that is 100% preventable. This isn’t just research according to Kathy Paxton. This is, when we think about research, it’s the surgeon general advises against women not drinking and that even before they become pregnant, that they should stop drinking, and also, if they’re thinking about breast feeding as well.

When we talk about Fetal Alcohol Spectrum Disorders we can’t leave out that word alcohol. It’s important to understand that alcohol is a part of our lives, that it’s a part of our culture. We use alcohol to celebrate, relax, socialize. It’s also a very strong legislative lobby in every state. There is also stigma attached to receiving treatment, particularly for women in the United States. It’s also something that’s available and accessible, but it’s also not illegal for adults. If you just go back 30 years and think about how the availability of alcohol has changed, it used to be 30-35 years ago that the only place that alcohol was sold might be a beer joint or a local state store. Now it’s hard to find a restaurant that doesn’t have alcohol or serve it.
It’s also hard to find a grocery store. It’s also labeled and marketed towards women to young teens.

When we think about prevalent alcohol attitude, I’ve done some time doing surveys with folks across the United States and even though your first response may be that you don’t agree with these things, overwhelmingly people do agree. Most alcoholics are lonely, poor people. Most alcohol abusers are men. These are the myths. These are things that people actually think. It looks better for a man to be drunk in public than a woman. And women who drink during pregnancy are very selfish. I’d like to look at those four statements and talk about those.

Most alcoholics are lonely, poor people. We may say that that’s not true and as professionals many of you might think that we know better, that there are women in treatment, that there are professionals in treatment, people that have problem with addiction. But, media actually exposes us to the ideas that it is the bum, it is the person down on their luck, it’s the homeless person, it’s the street person who is the alcoholic. We also hide our women users of alcohol. Again, when we talk about stigma, and it looks better for a man to be drunk in public than a woman. I do this survey and kind of an imaging exercise where I actually ask people to think about their responses. And when they close their eyes and they think about running into someone who has had too much to drink, whether that’s a woman or a man, and the word most commonly discussed after they have envisioned a man drinking is unemployed, poor, drunk those kind of things. But, when you think about a woman there is completely different language and it’s usually attached to her sexuality, thus creating the stigma that’s related and really hindrance to women getting treatment.

The next statement, women who drink during pregnancy are very selfish. In all of the years that I’ve been doing this work with Fetal Alcohol Spectrum Disorders I find that it’s an issue of education. It’s not an issue of selfishness. I believe that people just don’t think. I think that they’re given a lot of information that is incorrect, even by their physicians, that’s telling them it’s ok to drink wine. Or they read articles about women who have drank during pregnancy. So I think it’s miscommunication and an issue of awareness and education. I don’t believe that people purposefully take a drink and knowing that in mind want to produce a child with mental retardation or some of the other deficiencies and thus resulting in disabilities.
Here’s additional attitudes I hear: You know the teachers are very hesitant to talk to a child’s parents if they suspect that the student has some type of alcohol related birth defect. It’s a little different if maybe the parents’ behaviors actually caused that disability. So it makes talking about it a little more difficult.
The last attitude: Physicians don’t always ask a woman about her drinking habits. This one’s really tough. I understand in research that 80% of us do exactly what our doctors tell us to do. So I think it’s very important that physicians are really the key to a lot of information that’s disseminated to pregnant women.

When we talk about alcohol it is depressant and many people don’t understand that. They think because it sometimes excites normally quiet people that, therefore, it must be a stimulant. But it is a depressant and something to remember is that a depressant stops, stunts or retards the growth of cells. I had a physician once tell me that it’s like a shotgun blast and so whatever it hits, again, it stops, stunts, retards or slows down the growth of whatever it hits.

When we talk about the transmission of alcohol from the mother to the baby, it’s important to understand that it passes through the mother’s blood to the baby. And these things that can do that are often referred to as the study of monsters and that is the definition of a teratogen, something that can cross through that placenta and causes harm to the baby. It then enters the baby’s blood stream and then it can pass into all developing tissue. Alcohol can also be transmitted to a baby during breastfeeding. This can additionally cause brain damage because some people aren’t aware that the brain continues to develop after birth.

Alcohol on the developing fetus has numerous effects. Can be growth deficiency, developmental delays, facial anomalies, physical defects, behavior problems, cognitive problems and motor deficits. It can be one or two of these effects or it can be all of the above.

If many of you heard about Fetal Alcohol Syndrome several years ago some of that terminology has been expanded to where it is now termed as FASD, which is the umbrella term used to describe those range of effects. The actual diagnosis is Fetal Alcohol Syndrome and it has specific criteria in order to obtain that diagnosis. FAE is somewhat of an outdated term. Some researchers still use it but it’s Fetal Alcohol Effect and that’s where you may have a few of the signs and symptoms but not enough for the full diagnosis. ARND is Alcohol Related Neurodevelopmental Disorder and it really is used to describe that alcohol exposure on the brain or central nervous system.

When we talk about getting a full diagnosis of FAS, there are some things that have to be present. First of all it usually results in growth deficiency and it’s usually with the head, the height, the weight. The children are usually smaller in size. Special pattern facial features. Signs of central nervous system damage.
When we talk about Fetal Alcohol Syndrome we’re not talking about something that has been around for a very long time as far as the diagnosis itself. Warnings have been posted and discussed for hundred and hundreds of years, but as far as the term that actually identifies Fetal Alcohol Syndrome, that occurred literature in about 1973 from Smith and Jones at the University of Washington. This medical diagnosis, the ICD code is 760.71.

When we look at facial characteristics, if you look at the young man in this particular slide, you will see that the mid-face is particularly affected. You will see the short nose, the space between the nose and the upper lip is really the absence of a philtrum and that is the little notch that you have above your lip, which results, that flattening of mid-face, results in the appearance of a thin upper lip. A lot of times there are minor ear anomolies. I was told once by an obstetrician that is because your ears, when you are growing in your mother’s womb, start low on the sides of your jaw and then they move upward. Additional features include epicanthal folds, a low nasal bridge and the short palpegral fissures, which are kind of the small eye slits, and it looks like an extra eyelid over the top of the existing.

When we talk about Fetal Alcohol Spectrum Disorder we need to think that many individuals are diagnosed with other disabilities. They may be diagnosed with mental retardation or some type of mental health diagnosis because we often looked at symptoms versus origin. Doctors often diagnosed however the student or individual presents to them. What we must remember is that all children are not going to have the FAS face that some of you may have learned about several years ago. Bottom line, it is not the face that needs the services.

When we talk about getting an accurate diagnosis and referring individuals for diagnosis, the reason we want to do that is: a. Help prevent secondary disabilities. We want to help the person receive appropriate services and entitlements. We want to aid communication not only between the individual and their families but also their caregivers, their educators and provide that education to each person because it takes a team to work with these individuals and their families.

In order for you to make a good referral and this is for parents and providers there is good information that you need to take along with you when attending the first scheduled interview. First, there has to be a history of alcohol or substance abuse in the family, verification if possible. Any school history that includes report cards, any history with special education, dropouts, learning disabilities, all of those need to be documented, the same thing with mental health. If the child has multiple diagnoses, if there have been interventions that have been tried including medication, counseling…those need to be documented well. Any type of social profile, social history including multiple placements and anytime living out of the natural home or within foster placement. And lastly, any type of legal problems that have come up with the child, frequent contact with local officials or anytime that they have spent outside of the home in juvenile facilities.

When we talk about the factors that can impact a fetus, we kind of go back to when that baby is inside the mom and we think about how much that mother’s drinking, of course. We want to think about that time and dosage, but we also have to look at the mother’s genetic makeup, the baby’s genetic makeup, and the mother’s nutritional level.

There’s no safe time or amount of alcohol during development. If you look at this picture we think about from the beginning of the child’s gestation, three weeks to full term. If you look at each one of these areas there is no safe time for alcohol to be introduced into that child’s system.

Alcohol and brain research is something that is fairly new and the researchers are able to determine with greater reliability how, actually, alcohol does affect the baby’s brain. It has a direct toxic effect on the cells and can produce immediate cell death or the brain can actually contain fewer cells than normal. The risk of the brain damage exists during each trimester and the fetal brain develops throughout the entire pregnancy and after. Prenatal alcohol exposure does cause brain damage. While this brain damage can’t be undone, people can grow, improve and be successful. That’s often what, this last point, that we often forget about is because brain damage is something that can’t be reversed. We have often in the past heard well it’s 100% preventable but 0% curable. I think we’re doing a disservice to the individuals that we’re working with to subscribe to the 0% curable. Even though the damage cannot be undone, we can help navigate the lives of these individuals and help them grow, improve and be successful.

Here’s a picture of the brain. The one on the left side is that of a normal brain. The one on the right is the brain of a child that passed away that had Fetal Alcohol Syndrome. As you can see the hemispheres are almost joined together. There is no definition within the brain and it’s much smaller in size.
When we talk about specific brain damage we have to think about size and we have to think about where the damage is located and other problems, such as cysts or cavities in the brain, seizures, tremors, poor fine motor skills. When we look at the absence of certain portions of the brain that has been done through MRI studies, we have found that there are areas of the brain that are completely missing.

Things to look for or learning disabilities and behavioral problems that individuals have with Fetal Alcohol Spectrum Disorders is mental retardation, attention deficits, hyperactivity, poor impulse control, problems in social perception and speech and language delays or deficits.

Additional problems may be: poor capacity for abstract thinking; specific deficits in math skills; problems in memory, attention or judgment; and problems changing behavior or response in different situations. There are usually problems anticipating consequences and problems with cause and effect. With these additional problems, many of these occur throughout the lifetime and throughout the spectrum.

When we talk about FASD Disabilities we categorize them as primary disabilities, which are the ones you’re born with and secondary disabilities that are often preventable. Here’s what to look for: physical problems including hearing loss, poor eye-hand coordination; a lot of times students have a really difficult time with fine motor skills but also copying from a board if they’re in a classroom because of this poor eye-hand coordination; deficits in motor skills; problems with balance and walking; and problems with sleeping and actually feeding. The behavior problems include hyperactivity, stubbornness, impulsiveness, irritability and risk taking that is at dangerous levels. Within cognition and learning: visual spatial skills, learning memory; low IQ; problems following multiple directions or commands; trouble understanding cause and effect; speech and language; particularly items 3 and 4, problems following multiple directions and trouble understanding cause and effect, again often are throughout the lifetime and throughout the spectrum.

I wanted to give you common examples of where these particular problems might come into play, what would help you recognize Fetal Alcohol Spectrum Disorders in individuals that you are working with. Missing meaning, humor and insight in conversations- they are the individuals when you are asking a group of young people did they have a great summer vacation and tell you the one great thing or something fun that they’ve done over the past weekend and the individual raises their hand or blurts out that their dog died or something that is very sad. They are unable to get jokes, punch lines and innuendo. In our world innuendo is a very important thing to understand. It helps guide and direct a lot of our behavior. It’s those unspoken things. It’s when a parent gives someone the eye. It’s when someone rolls their eyes. It’s when someone makes a face. These individuals cannot determine innuendo. Other common examples will be thinking about cause and effect of consequences. If you have a child that is, say three years old, and you tell them not to touch the hot stove, their going to touch the hot stove, and you can’t understand why that they wouldn’t understand. If you do not understand cause and effect, it cannot only be detrimental to other individuals’ health but the child as well. A lot of times these kids will present as being abused. They don’t understand danger at all. They also can’t predict an outcome, which kind of goes along with the cause and effect. So, planning, preparing those types of things are very difficult for them.

Here are some more examples: they are unable to generalize information, like patterns, thoughts, forming links; memory deficits, poor short term auditory memory and really getting information out of the long term memory; judgment skills- we kind of talked about that with cause and effect- but they really act before they think and they may seem noncompliant and willful when in fact they are just simply unable to understand; socialization and independence is difficult- this is the child that won’t hug their grandmother but will hug a stranger; they probably will never going to be able to rely on their own skills or their own judgments with regard to social interactions with other; they are going to need lifelong need support and supervision.

When we think ages and stages, if we are working with a 15 year old or have a 15 year old living in our home and they act like a 10 year old, that’s kind of easy for us to differentiate and understand between the two. But then what we don’t do a good job at is applying that same stage of understanding to interventions. So, if we are working with that 15 year old and they are developmentally at a 10 year old age then what types of interventions would 10 year olds use? We simply do not understand that we can’t apply those same interventions that we would for the 15 year old. People with FAS often can talk the talk but can’t walk the walk. If I’m a classroom teacher and I ask Susie not to chew gum in class, I will look at Susie and Susie is chewing gum. I will ask Susie not to chew gum and she’ll say, “ok, I understand”. I will look back as Susie five minutes later. She is still chewing the gum. I will ask Susie to quote the rule. What is the rule and Susie will say, “Don’t chew gum in class”. Susie is able to know the rule, quote the rule but there is a disconnect between actually knowing the rule and application for her behavior.

When we talk about secondary disabilities, those are things that we can really try to prevent. Over 90% of individuals with Fetal Alcohol Syndrome have mental health issues; 60% a disrupted school experience; over 60% trouble with the law; over 50% end up in some type of, they are incarcerated; over 49% almost half engage in inappropriate sexual behavior; and over 35% in alcohol and drug problems.

Two of the most important things we can do is to make sure that that child is living in a stable, nurturing home. Living in that stable, nurturing home leads to a safe environment with physical and emotional needs met. When I work with families across the United States they will tell me that “yes, it’s important for my child to be educated well. Yes, it’s important that their medical needs are met”. But the number one problem is safety. They want to make sure that their child is safe in their home, 24 hours a day. The second protective factor is early diagnosis before age six. This will lead that individual to be eligible for services, which will help them in all areas of their recovery.

Many individuals with Fetal Alcohol Spectrum Disorders are victims. Predators are a huge problem. A few years ago a blog site was started for individuals with FASD. Within 15 minutes of the blog site being open to the public, there were numerous predators looking for individuals. It seems these individuals, our kids, are unreliable witnesses. They are socially functioning lower. They are often the patsy or the fall guy. They are the individuals who won’t make the plan for a crime or get into trouble, but they are the individual that is left holding the bag. Their brain damage hinders the inability to deal with any of the usual life demands. And, they are also unable to resist sexual advances.

I guess the most important thing for us to do as parents and providers is prevention. Number one, educate yourselves and others. I implore you to become aware. And as you go through your circle of influence, it may be your physician, it may be teachers, it may be other colleagues. Make sure you educate yourself first and then others. Secondly, it’s important to appropriately identify and refer. You can’t pick out one slide in this presentation and assume a child has Fetal Alcohol Spectrum Disorders because they have misshapen ears or they have a space between their nose and upper lip, or they have some type of mental retardation. It’s a puzzle. It’s a picture. All of these things have to be put together in order to make an appropriate diagnosis. It’s important to make sure that the diagnosis is not the end point for this individual even though it’s a protective factor and can help. It’s what comes after the diagnosis that’s going to help the individual and their family. The next thing that we can do is provide treatment. We need to seek out knowledgeable professionals. Individuals throughout our state and nationally that have experience in working with individuals with Fetal Alcohol Spectrum Disorders.

What we can do individually is try changing our approach. We need to give people with FASD longer to answer, longer to develop and longer to achieve. We need to re-teach, re-teach, re-teach skills in every environment that that individual is going to use. We can’t assume anything. We need to move what’s going wrong with them to what is going on for them. Be positive!

Probably the best steps for action would be to modify your environment. This is something that doesn’t cost a lot of money. We can create boundaries where there aren’t any. We can modify classrooms that are more consistent and more conducive to learning. We can make sure that our homes are not full of clutter and that just like with the classroom modifications, we can do those same things in the home. Be very consistent. Be very specific. Give simple commands. There are a lot of things that we can do that is affordable. Modify not only our expectations but help the individual modify expectations of themselves. We need to think younger or think stage, not age. We need to think perpetual innocence, particularly when it refers to the socialization of individuals. We need to make the world make sense for them. We need to be concrete and specific. We need to keep things simple. We must repeat directions and rules more than once and break them up into fragmented or simple commands. We need to have consistent routines. Probably the most devastating event that can occur in a young persons life while being in a school system is when a bell changes or there is an early out day. Those are devastating. Anything that is unplanned and out of the ordinary can be very difficult for these individuals. Changing classes, all of these things create anxiety and lessen their ability to learn and focus on the task at hand. Again, we all must use structure.

There are a few things that I really would like you to remember. There’s no proven safe amount of alcohol use during pregnancy….not a single drop! Alcohol can damage the fetus at all stages during a pregnancy, and any amount. People with FASD are everywhere and in all systems of care, whether they have a diagnosis or not. Remember, that depending on where they entered the system, if they were more involved with the brain damage, then maybe they’ll be receiving MR services. If they were coming into the system, if they have more behavioral problems, they may be entering the system in the mental health capacity. FASD can occur in all communities. It doesn’t matter what color you are or what part of town you come from. Fetal alcohol exposure is the leading known cause of mental retardation in the western world, yet it’s something that is 100% preventable.

My final thoughts are to remember that expectations have to be realistic and appropriate to each person with FASD. This is a spectrum. Do not generalize about individuals with FASD. And lastly, see people not problems.

There are good resources in the state that you can go to for assistance. The FASD Statewide Initiative is coordinated through The Ohio Department of Alcohol and Drug Addiction Services and their state coordinator is Melinda Norman. A parent network was founded through that organization which has parent representatives in Central and Southeast Ohio, Northeast Ohio and Northwest Ohio.