Introduction
It is great to be here. I appreciate all of you being here this afternoon. If anybody wants to contact me after today, please feel free. Please recognize that the letters in my email address are the reverse of the letters in my name because I mistyped my name when I set up my email.
I want to thank my son, Bill, for getting me to think about Fetal Alchohol Spectrum Disorders (FASD) and learn more about it. He was diagnosed with FASD when he was 19 years old. Before that, he was diagnosed with ADHD, oppositional-defiant disorder, reactive attachment disorder, and several other diagnoses where the treatments did not work. He was labeled as being noncompliant, resistant, and manipulative. This is because typical treatments for other disorders really tend not to work if it is truly a FASD. He taught me to think differently about behaviors, and find out what is causing a behavior. That is really the key in FASD. It is understanding from where these behaviors are coming. Behaviors that look willful and purposeful are really due to how the brain is processing information. We will talk about that more this afternoon.
Nobody would see my son in their program, and nobody would meet him on the street and say, "This is a young man with this disability." He taught me how painful it is to live with a hidden disability. You are told over and over again by everybody that you are bright, you can do it, and that you are just not trying hard enough. The IQ span that has been identified in FASD ranges from about 29 to over 140 on the high end, which is genius-level. So if somebody has an average or above-average IQ and they are not following directions or doing what they are supposed to be doing, we think it is willful, purposeful behavior. And in FASD, it typically is not.
Fetal Alcohol Spectrum Disorders (FASD)
- FASD is a spectrum of disorders
- There is a wide range of intellectual capabilities in individuals with an FASD
- There is a wide range of disabilities due to prenatal alcohol exposure, from mild to severe
- There is no way to predict how much alcohol will cause how much damage in any individual
- There are many different ways that the disabilities of FASD are manifested
The term fetal alcohol spectrum disorders was coined about 20 years ago now. The reason that term was coined was to convey the idea that this is a true spectrum. It can be mild disabilities that are never picked up. Examples may be somebody who has trouble with math in school or in social situations and with relationships. This is the mild end of the spectrum. On the other end of the spectrum can be fetal death. Then, there is everything in between. Everybody with an FASD does not have the same problems to the same degree. However, there are some that are pretty consistent that we will talk about. The difficulties are manifested differently in different people. There is no way to predict how much alcohol will cause how much damage to any individual. One woman may consume a few alcohol drinks even before she knows she is pregnant, and this may cause real problems for her child, while another woman may have the same amount of alcohol at the same time during pregnancy and have a different outcome. Everybody metabolizes alcohol differently. This is true even in the fetus and in twins as each fetus metabolizes alcohol differently. The only proven safe amount of alcohol to use during pregnancy is none.
FASD Behaviors
- Behavior often appears to be purposeful
- Typical approaches to “difficult” behaviors often don’t work
- Many individuals with an FASD have other difficulties
- One cannot categorically say that all behavior is due to the FASD
- Not all children prenatally exposed to alcohol have an FASD, but the spectrum of FASD causes brain damage
In FASD, the behaviors that we see, as I said, appear to be willful and purposeful behaviors. Like giving instructions in school or giving instructions at home, and the child does not follow through with it. And when you ask them, especially when they are an adolescent, "Why didn't you do it?", they often say, "I didn't feel like it." It looks and feels very willful and purposeful.
When we use typical approaches, like reward and consequence approaches, they often do not work. Examples in school, especially in special education, include using points, stars, and stickers. These are the kids with the fewest numbers of points, stars, or stickers in the classroom. The concept is often that we have not found the right thing, and when they are motivated, they will do what we need them to do. I will tell you that all the way through school, Bill had the fewest numbers of points, stars, or stickers. It had nothing to do with him being motivated or not. It had to do with his inability to operationalize what he needed to do. As he got older, he could recite what he needed to do, he just could not do it.
The other thing is that people with FASD often have other difficulties as well. They may have co-occurring mental health and other issues. Not all behavior is due to FASD. What I am going to talk about this afternoon are behaviors that we typically see due to brain processing in FASD.
Not everybody prenatally exposed to alcohol has an FASD. However, what has been found in research, across the spectrum, from very mild to severe, is that there is brain damage. Understanding that there is brain damage and knowing the brain basis of the disorder is really essential in how we move forward in helping people with FASD and their families.
Incidence and Prevalence of FASD
- Recent studies in the U.S. have found a prevalence of between 1.13% and 5%
- Weighted prevalence in these studies was 3.11% to 9.85% (1 in 32 to 1 in 10) (May et al., 2018)
- 2013 estimates in Alberta are 1.4-4.4% (1 in 71 to 1 in 22) of the general population (Thanh, 2014)
- The range of FASD is more common than disorders such as Autism and Down Syndrome
Prevalence studies have been done by the CDC around fetal alcohol syndrome for quite a few years. They found very low rates of FAS, but that is because all of their surveillance was what is called passive surveillance, looking at hospital records and birth defects registries. And, up until recently in the United States, there was only one active surveillance study, which means actually examining people. That was done in King County, Washington, years ago. In this study, they found a prevalence of about eight times what the CDC reported.
There have also been active surveillance studies that were done in other countries. This is not just a problem in the United States, but this is a problem worldwide. People have said that women in France and Italy drink, and there is no FASD. Yes, there is, and there have been studies to show that.
Finally, in the US about three or four years ago, the National Institutes on Alcohol Abuse and Alcoholism funded four active surveillance studies in the United States. The first results of these studies were published by Phil May in 2018. Phil has done a lot of the surveillance since the early 70s in FASD, and he has conducted international studies as well. The prevalence that they found, by examining first-graders, was between 1.13 and 5%. Now, 5% of the population with an FASD is pretty significant. This is higher than autism and a lot of other birth defects and difficulties. From my point of view, the weighted prevalence is even more important as it could be one in 32 to one in 10. In order to get a diagnosis of anything, except full fetal alcohol syndrome, you need confirmed maternal alcohol exposure. They found a number of students who had the symptoms of FASD, but they could not confirm maternal alcohol exposure for a diagnosis. The other point is that in one of the studies, the state did not allow the researchers to examine kids in foster care. We know that there are high rates of FASD in foster care. The 1.13 to 5% is pretty skewed, and the weighted prevalence, 3.11 to 9.85%, is probably closer to what is accurate.
There was a study done in Canada in 2013 that found a 1.4 to 4.4% prevalence, pretty much what the U.S. studies found. If it is that common, maybe as common as 1 in 10 to 1 in 20 in the overall population, then it is much more common in our systems of care. The kids that you see in occupational therapy, for example, are more likely to have FASD than in the overall population. This is an important thing to keep in mind in terms of how you work with them and their families.
The other thing about FASD is that this is not a childhood disorder. This does not go away at 18, 25, or 33 years old. Thus, we see a number of adults, the vast majority undiagnosed or misdiagnosed, who have an unrecognized FASD. Think about some of the families with whom you have worked. You might set up appointments and they routinely show up late or they do not show up at all for their appointment. They say, "Oh, I'm really sorry, I forgot. I got caught up in something else." And you say, "Do you know when your appointment is?" And they say yes, and they can repeat it. But when the appointment time comes, they cannot pull that out in their memory and think, "I better leave for the appointment." It might not be that they are neglectful, but rather, they may also have FASD. We would have to do the same thing with the families that we do with the youngsters.
- Prevalence research is very limited
- Methodology variance
- Population variance
- Consent
- Adequate information for a diagnosis
- Much higher prevalence in systems of care e.g., special education, mental health services, early intervention services, corrections, vocational services, domestic violence programs
- Majority undiagnosed or misdiagnosed
The last thing I want to point out is that prevalence research is pretty limited in terms of methodology. This is because different studies have used different methodologies so it is hard to compare them. There is a variance in the population. One other issue is that these studies could not get consent from 100% of parents. They got about a 50% consent rate, which is pretty high. That means that 50% of parents did not consent to their children being examined which also skewed the results.
The adequate information for diagnosis is what I was talking about in terms of whether or not they have the facial features of FASD and confirmation of maternal alcohol exposure. Our diagnostic capacity around the country is really minuscule as compared to what we think is the true prevalence. As a result, the majority of kids, adolescents, and adults with an FASD are undiagnosed.
How Outcomes Can Be Improved by Recognizing an FASD
- The individual is seen as having a disability
- Frustration and anger are reduced by recognizing behavior is due to brain damage
- Abuse and trauma can be decreased or avoided
- Approaches can be modified
- Diagnoses can be questioned
However, as you are going to learn, it is really important to recognize when a person may have an FASD. This is when we begin to see the individual as having a disability. "Oh, this is why they are behaving the way they do." "This is why they are having trouble with these areas." It can reduce the frustration and anger of both families and providers. These are the individuals who keep repeating negative behavior over and over again. They say they know what they need to do, and they keep messing up. It gets really frustrating for those who deal with them on a regular basis. This puts them at high risk for repeated abuse and trauma.
As young children, they tend to have no stranger anxiety. As older kids, adolescents, and adults, they do not recognize dangerous people or situations. This is because of damage in the brain. If we recognize the FASD, we can reduce or maybe even avoid a lot of the abuse and trauma. As infants, they do not eat well, they don't sleep well, have poor sucking reflexes, and they may be labeled failure to thrive. They are often seen as very picky eaters. They might be up all night. Lastly, they often get into trouble with their siblings and into trouble in their neighborhood and in school. These are very difficult kids to parent if the FASD is not recognized. However, if we recognize the FASD, then we can adjust how we approach them. We can modify what we do and maybe question some of the diagnoses they have gotten.
My son Bill had many diagnoses like ADHD, oppositional-defiant disorder, and reactive attachment disorder. None of those were accurate, but his treatments were based on those diagnoses. Since we treat people based on a diagnosis, if they do not respond, then we think that they are just unmotivated. We may add medications or more medications instead of questioning whether they have been diagnosed correctly. Having worked in psychiatry for 40 years, I know if someone does not respond to a medication, we add medications. If they see another provider, they get another diagnosis. Nobody stops to take away diagnoses. On the contrary, if we recognize the FASD, maybe we can begin to question, "Is this really ADHD?" "Is it really a true reactive-attachment disorder?" "Is it a true oppositional disorder?" Or, is it how their brain is processing information? Then, the treatment is going to be very different. Having worked in the field for so long, I have really struggled with the resistance in education, in treatment settings, and really in all settings in recognizing the impact of FASD.
Challenges in Recognizing FASD
- Recognizing an FASD challenges the basic tenets of treatment and interactions with people
- That people need to take responsibility for their actions
- That people learn by experiencing the consequences of their actions
- That people are in control of their behavior
- That enabling and fostering dependency are to be avoided
- A person has to learn to do things on her or his own because that’s the real world
It challenges the basic tenets of everything we have been taught as a parent and as a professional. We have been taught that individuals learn by experiencing the consequences of their actions and need to take responsibility for their actions. That is the basis of all of our reward and consequence approaches. Although that does work with a vast proportion of people, it does not tend to work with those with an FASD. Letting that go is very tough as it just does not work with a lot of kids or adults with an FASD. What happens when continuing to use that approach is that they begin to think that they are either bad or stupid. One of the first things that they say is, "At least now I know I'm not just bad." Or, "At least now I know I'm not just stupid." This is the way that they have felt for years. Perhaps, not everybody learns by experiencing the consequences of their actions. And, when we use things like natural consequences, especially as adults, we put them at risk of ending up homeless, in jail, or dead. For example, the natural consequence of not paying your rent is that you get evicted. The thought is that you will learn to save your money to pay your rent. While this works with some people, this does not work with most with FASD. Instead, they end up homeless. "You do the crime, you do the time." When you do not want to do time, you will not do the crime again is the basis of our corrections system. This also does not work very effectively with those with FASD.
