I'd like to welcome everybody here to this event, "Alcohol-Related Birth Disorders and the Law: How Should Attorneys and Judges Respond to Fetal Alcohol Spectrum Disorders?" My name is Karen Bachar, and I am from the Office of Juvenile Justice and Delinquency Prevention. I also serve as the leader of the Justice Issues Work Group for the Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders. And I am serving as session moderator for this wonderful event. We hope that you will take this information and use it in your work to help children and adults with fetal alcohol spectrum disorders. We are going to have a packed session today, and I want to give you a little information about the structure of that session so we can maximize what we all get out of it. Our very first session after Melodee Hanes' comments are going to relate to alcohol and brain damage and how attorneys and judges and people in the legal community, what they need to know about this. Because of the nature of that medical information, what we're going to do is have a 10-minute question-and-answer session specifically related to that before we move into our second session. However, the other three sessions that are going to come forward, we're going to try to move through those and I'm going to ask the audience to limit themselves to clarifying questions, which you will need to ask right here at this center microphone. Now, it is my great pleasure to introduce Melodee Hanes, Acting Administrator of OJJDP. Mel came to the Justice Department in 2009, serving as the Acting Administrator for Policy and Special Counselor to the Administrator before being appointed by the Assistant Attorney General of the Office of Justice Programs to OJJDP's Acting Administrator last month. Prior to coming to DOJ, Mel served as Deputy County Attorney for 20 years in Des Moines, Iowa, and Billings, Montana. And in that capacity, Ms. Hanes primarily prosecuted child abuse cases, sexual assaults, and homicide cases. Additionally, she served as an adjunct professor of law at Drake University, where she taught child abuse cases, forensics law, and also taught law classes. Please join me in welcoming OJJDP's Administrator, Melodee Hanes. (applause) Thank you. Good morning. I am so delighted to be here. I've had two beignets already. (laughter) But I'm also delighted to be here because this is such a very important topic and I applaud all of you for addressing fetal alcohol spectrum disorder. I want to take a moment to recognize those who made today's event possible: the federal Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders; the American Bar Association, which is synonymous with Howard Davidson; the Minnesota Organization on Fetal Alcohol Syndrome; and OJJDP was proud to contribute as well. Karen Bachar has truly been a champion in our office staff, and I want to thank Karen for all the work she's done pulling this together. At OJJDP, we have a statutory, a congressional charge to do primarily two things-to address children who come into contact with the juvenile justice system, but we also have a charge to protect youth in America who are victims. We do a lot of work on prevention, intervention, and treatment of these kids as they progress along what really is a spectrum in the juvenile justice system. In the end, what we have learned in 37 years of existence is that these are all the same kids. The victims at the beginning, kids who are exposed to violence, trauma, leading through the spectrum to kids who become involved in the system. In 2009, the Department of Justice conducted a study along with the Centers for Disease Control that indicated that 60 percent of youth in America were exposed to violence or crime in their homes, or in school, or in their community. That is an extraordinarily high number that we as adults would never tolerate that kind of exposure to crime. We have spent 37 years in conducting research such as the National Survey on Children Exposed to Violence, and what we have also learned is that once children set foot into the juvenile justice system, their chances of a positive outcome in life drop exponentially. They have a 50 percent chance of once again entering the criminal justice system as an adult. So it's our job to be leaders nationally, to look at issues and causes and correlates for why kids get into the system to begin with. And it's our job to be leaders with providing the best practices, the evidence-based practices based on research that are going to do the best for prevention, intervention, or treatment along that spectrum. Today we're here to examine how the legal system handles youth who have fetal alcohol spectrum disorders. Every year children are born to mothers who drank alcohol during their pregnancies. The estimates are 1 in 100, in this country, are born to a mother who drank during her pregnancy. That factors out to be about 40,000 children a year who are born with fetal alcohol spectrum disorders. That's larger than the population of my home town, Helena, Montana. That's a lot of kids. That's too many kids. A child exposed to alcohol when in utero may be born with physical, mental, behavioral, or learning disabilities. In short, these children suffer brain damage and their disabilities can be lifelong. Their condition often goes undetected and often untreated. The effects of fetal alcohol spectrum disorders may vary from child to child. They can be either mild or severe. They can manifest in a number of ways. Children who lack impulse control, poor social skills; often these youth don't understand the consequences of their own actions. They may have a bad sense of personal boundaries. Many of these children are very susceptible to peer pressure and can be easily led, and they often exhibit poor judgment. Any of these conditions alone can predispose a child to act in ways that are going to cause them to come into contact with the juvenile justice system. Their condition, however, may lead them to worsen their own situation. They often don't know how to deal with police, with attorneys, with judges, social workers, corrections officers-the myriad of people that are involved in the juvenile justice system. They often don't understand their rights and will confess or implicate themselves or others, even if they're not guilty. I'd like to tell you a little anecdotal story of when I was prosecuting in Des Moines, Iowa, back when I was a baby lawyer about 20 years ago, so it was really when we were just learning about fetal alcohol spectrum disorder. I was on the sexual assault docket, and I got a case one day of a 14-year-old girl who had skipped school, had gone to the mall and hooked up with a group of kids, went back to what ultimately was the defendant's house who was 19 years old. They drank all day. One thing led to another and the two of them began to have sexual contact, but when she objected it became violent and forceful. She reported it to the police later that day and the police conducted an investigation, and when they went to interview the defendant, the defendant said, "Yes, that's right, I did that, yes, it was forceful," not really understanding the boundaries, the consequences. It was a very difficult situation 20 years ago and I don't know how much it has improved today, but hopefully we are enlightening our bench and our bar about what the real origins of fetal alcohol spectrum disorder are. In that case, I'm glad to tell you we had a judge that understood, and we found as appropriate a resource as we could at that time and diverted him for treatment. But these cases do present significant challenges, not only for the defendant, for the victim, but for the attorney and the ethical obligations that attach to it as well. Often these kids have memory problems. Once they get in the system they may be victimized by other inmates. It presents a very unique challenge to the juvenile justice system and to us as attorneys. They require attorneys who represent them and are familiar with fetal alcohol spectrum disorder and how it affects their young lives. We know we need to learn more about this problem and what the juvenile system can do to improve the handling of kids with this disorder. At OJJDP, we support screening and assessment of all youth when they enter the juvenile justice system. Effective screening should be the first step toward the development of a diagnosis of the youth's condition that is going to inform the attorney's advocacy before that child even appears in court, that will inform what the appropriate disposition of the case should be. In tribal communities where fetal alcohol spectrum disorder is a major social and cultural issue, OJJDP has allowed our Tribal Youth Program funding to be used to address treatment issues for children with this disorder, to address treatment issues for youth with substance abuse problems. Under our Enforcing Underage Drinking Laws-EUDL program-some states use that block money grant we've given them in the past to develop public awareness campaigns about the dangers of adolescent drinking. And some states are beginning to use these campaigns to teach the dangers, especially of heavier binge drinking, on unborn children. So this morning we're going to hear experts on several topics relating to the intersection of fetal alcohol spectrum disorder and the law. Our first panel is going to talk about fetal alcohol spectrum disorder, its biomedical and mental health effects on its young victims, and its implications for the legal community. Other panels will discuss this disorder as it relates to criminal and juvenile law, child and family law, and the families themselves-their right to council, their eligibility for social services, for resources, and other benefits. And our final panel is going to discuss the ABA's initiative on fetal alcohol spectrum disorder. We're only really just beginning to understand how alcohol affects the unborn development and the prospects of that child. We understand less about what the juvenile justice system can do to meet the needs of these youth and to improve their outcomes. So this morning's panels should be an eye opener for most of us. But before we begin, I want to take a moment to recognize Howard Davidson and the work he has done on the ABA's draft resolution to improve the legal and judicial response to youth who suffer from fetal alcohol spectrum disorder. Where's Howard? There he is. Thank you, Howard, for all of your work. (applause) The ABA House of Delegates has scheduled to consider the resolution at the next annual meeting in August, and Howard will be this morning's final presenter and he will talk about that draft policy. Dr. Sally Anderson will moderate the first panel. She is the Coordinator and Executive Secretary of the Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders. She is also the Special Assistant in the Office of the Director of the National Institute on Alcohol Abuse and Alcoholism with the National Institutes of Health. Prior to that, Dr. Anderson spent decades as a biomedical research scientist who studied natural brain chemistry and how trauma and toxic substances affect behavior. I turn the floor over to Dr. Anderson. Thank you very much. (applause) People with fetal alcohol spectrum disorders will appear on every court docket. You need to know about them. I'm not going to do a long introduction here. We have three biomedical and mental health experts to talk to you today to try to educate you a little about the medical aspects of fetal alcohol spectrum disorders. So we have a panel of three individuals, Dr. Kenneth Lyons Jones, Dr. Julie Kable, and Natalie Novick Brown, and they will give you the biomedical introduction and the consequences for legal and justice professionals. Dr. Jones? I'm going to start off this morning by discussing the fetal alcohol syndrome and the fetal alcohol spectrum disorders by outlining the physical features of this disorder. However, before that, I'm going to provide you with a very brief historical perspective regarding this disorder. Amazingly, when this disorder was first recognized in 1973, all the medical textbooks stated that alcohol was safe for a woman to drink throughout her pregnancy. However, when we and others went back into the ancient literature, there was ample evidence indicating that prenatal alcohol exposure had been associated with serious problems in fetal development long before that time. For example, there was evidence from classical Greek and Roman mythology suggesting that maternal alcoholism at the time of conception can lead to serious problems in fetal development. Ancient Carthaginian rituals forbade the drinking of wine by a bridal couple on their wedding night in order that defective children might not be conceived. Despite these concerns and many others like them, alcohol developed into a serious problem throughout the world and nowhere was that more of a problem than in 18th century London. And you see on this next slide an etching entitled "Gin Lane," which was done by a social critic at the time, William Hogarth, and you see all evidence of debauchery going on in this slide. It doesn't show up very well, but in the center of the slide you see a woman who is reaching for a penny to buy herself a cup of gin from this character here, and as she does so, the baby that she is breastfeeding falls off her lap. Then in 1900, Sullivan investigated female alcoholics at the Liverpool prison, and what he found indicated an increased frequency of early fetal death and early infant mortality in their offspring. Other investigators have found an increased frequency of prematurity and decreased weight of surviving children born to chronic alcoholic women. Then in 1929, Ernest Hemingway discussed the effects of alcohol on fetal development in his book, A Farewell To Arms. And in 1932, Huxley discussed the effects of alcohol on fetal development in Brave New World. And I'm just going to read very briefly from Brave New World. "He's so ugly," said Fanny, "but I rather like his looks. And then so small." Fanny made a grimace; smallness was so horribly and typically low-caste. "I think that's rather sweet," said Lenina. "One feels one would like to pet him, you know, like a cat." Fanny was shocked. "They say somebody made a mistake when he was still in the bottle. Thought he was a Gamma and put alcohol into his blood-surrogate. That's why he's so stunted." So this brings us very briefly through this historical perspective to the present, and I just want to talk briefly about this. In 1973, when this disorder was first recognized, we thought that maternal alcohol consumption led to a very specific pattern of malformation, which was referred to as the fetal alcohol syndrome. At this time, however, we believe that prenatal exposure to alcohol causes a broad spectrum of defects, which have been referred to as fetal alcohol spectrum disorder, which is depicted on this next slide and this comes from the Institute of Medicine categories. You'll see in number one, the most severe end of the spectrum, and that's the fetal alcohol syndrome itself, and this is a very specific pattern of malformation that I'm going to talk to you here about in a minute. But you see that there are various other categories as well, going down to the most mild end of the spectrum which is seen in children and adults who are otherwise completely normal, except for the fact that they have striking neurodevelopmental problems, and those children are referred to as having ARND or alcohol-related neurodevelopmental disorder. And Dr. Julie Kable is going to talk about the neurodevelopmental effects of alcohol after my talk. It's important for all of you as attorneys to realize that many of the individuals who you see who have been affected by alcohol will be structurally normal but will have neurobehavioral defects and many of them, in fact, will have IQ scores that will be in the normal range. Now, I want to talk about this phenotype referred to as the fetal alcohol syndrome, but before doing that I'm going to give you two generalizations about this phenotype. First, the developing brain is the structure that's most sensitive to the prenatal effects of alcohol. And secondly, most of the features that you are going to see in your client with the fetal alcohol spectrum disorder are secondary to the effect of alcohol on brain development. And I'm going to go through that as I show you this phenotype, which is shown on this next slide. So what I'm going to be talking about here is the full-blown fetal alcohol syndrome, so this is at the most severe end of the spectrum that we see following prenatal alcohol exposure. So these children and adults have prenatal growth deficiency, meaning that they are very small at the time of birth; they have postnatal growth deficiency, which is rather striking because these children are no longer being exposed to alcohol, and yet, despite that, they continue to be small and to also decrease in terms of their growth rate; and they have microcephaly, meaning that they have a very small brain. Secondly, they have problems in performance, so they have developmental delay, they have fine motor dysfunction in the newborn period-and Dr. Kable is going to talk about that here in a moment so I'm not going to say any more about that. But finally, they have very typical abnormalities of their face which allow us to make a diagnosis that that's this disorder. They have short palpebral fissures; they have a long, smooth philtrum; and they have a thin vermilion border of their upper lip. So on this next slide is my second-born son. He does not have the fetal alcohol syndrome, but I'm showing you this picture to show you what I mean by short palpebral fissures. This is a measurement from the inner corner to the outer corner of the eye, so a horizontal measurement. Now, from the standpoint of normal embryologic, human embryologic development, the palpebral fissure is a dependant structure. It depends upon the eyeball or the optic vesicle, which it comes forth from the frontal area of the brain. So it comes forth, and it induces the overlying skin or ectoderm to make this palpebral fissure. So it depends on the eyeball. So the effect of alcohol on the palpebral fissure is not the effect of alcohol on the palpebral fissure itself, but the effect of alcohol on the frontal region of the brain. And you see on this next slide a newborn baby with fetal alcohol syndrome. You can't see this child's palpebral fissures here, but in this next slide I am pulling these palpebral fissures apart, and you can see that it's a very short palpebral fissure and it looks as though this child really doesn't have any eyeball at all in there, but in fact he does- it's just that it's very small. And on this next slide you see a 9-year-old child with fetal alcohol syndrome, and you can perhaps appreciate the fact that those palpebral fissures are very short. Next we have long, smooth philtrum and a thin vermilion border of the upper lip. I'm just going to show you another one of my sons who does not have the fetal alcohol syndrome, but to show you what I mean by a long, smooth philtrum and a thin vermilion border. His philtrum is normal. The philtrum is the area from underneath the nose to the red part of your upper lip, and you will see there that he has these vertical ridges, and if you run your finger over that area, you will find that you have those vertical ridges as well. And then he has a Cupid's bow configuration of his upper lip. Now, this area comes from the frontal brain area of the human embryo. This is an embryo at 35 days gestation. You'll see those two pits there: they're the nose-they're the nares, not the eyes, and the other area in the middle here is the mouth right across here, and that area-the philtrum and the upper lip-come from the medial nasal processes, which are this area of the face here. So again, the smooth philtrum and thin vermilion border of the upper lip does not come from alcohol's effect right there, but alcohol's effect on the developing brain. And here is an 8-month-old child with the fetal alcohol syndrome, and you will see that he has a very smooth philtrum, he lacks those vertical ridges, and his upper lip is very thin. And here is the same child at 10 years of age, and this is the most classic case you will ever see of a child with the fetal alcohol syndrome. You see that he lacks those vertical ridges completely and his vermilion border is thin and smooth. Then there's some other defects that we see in this disorder more frequently, and I'm just going to mention two of them: that's joint anomalies and altered palmar crease patterns. You see on this next slide a little boy whose right leg is shorter than the other, and that's because he has a congenital hip dislocation. So from the standpoint of normal embryologic development, the joints develop as a function of movement, and that movement is obviously directed by the brain. So we start off in this fetal position as you know, all crunched up like this, and our joints develop because we start moving in utero. And a mother starts feeling that at about 18 weeks, but it occurs far earlier than that in development. So if a baby in utero is affected by alcohol in its brain, it doesn't move properly, and therefore they develop serious problems in joint development and they also develop these palmar crease patterns. And the reason for that is the palmar creases start developing at about 10 weeks and they are also a function of movement. So if a baby is not moving properly because of the effect of alcohol on the brain, the baby is going to have abnormal crease patterns, as you see there and as you see there. So I want to just summarize by saying to you that here again is the phenotype of this disorder. Most of the things that you see in this phenotype is due to the effect of alcohol on the developing brain. And just to go through that- microcephaly, the small head; the performance problems that Dr. Kable is going to talk about in a moment; the short palpebral fissures; the long, smooth philtrum with the thin vermilion border of the upper lip; the joint anomalies and the altered palmar crease patterns are all secondary to the effect of alcohol on early brain development. Thank you. (applause) I'm going to start off by explaining that these slides are children we've seen in the clinic, and I actually invited them to a picnic for the sole purpose of having pictures of children that are alcohol affected having fun and playing. Because I think sometimes when you look at some of the clinical things and you see all of the dysmorphia accentuated, you sometimes lose focus of them as individuals and persons. I'm going to start off also by telling you that I've been asked to do the impossible. Since the original identification of fetal alcohol syndrome in the scientific literature in 1973-at least the American scientific literature- there have been over 35 years of research on the neurodevelopmental outcomes associated with prenatal alcohol exposure. And in 1995 and 1996, we started diagnostic clinics devoted to the care of alcohol affected children. And then around 2000, we started targeted interventions. So I have to summarize all of this information for you in 13 minutes, so hang on. I am going to break the talk up into discussing neurodevelopmental outcomes, and then behavioral or neurobehavioral outcomes, and then adaptive outcomes, and then intervention related because I think it has huge ramifications for how the legal system deals with alcohol-affected children. Everybody knows or many people know that there's a hit to the overall IQ, that was one of the first things we discovered with our science, and there is an increased incidence of individuals having intellectual deficiency or mental retardation. Unfortunately, having that diagnosis actually sometimes helps as a protective factor for these kids because the average IQ, when we look at populations, is typically in the 70s, which-if you don't know much about IQ scores-that means you're on the borderline range. That means you're very impaired, but society doesn't kick in to give you services. And in addition to that overall IQ hit, we have deficits in their visual-spatial reasoning skills, memory impairments, and then executive function skills, which I think our science is telling us have huge impacts on their everyday function and huge impact on how they interface with your legal systems. It's important to know that the neurodevelopmental outcomes have clear neuroimaging and neurological evidence or neural basis, and we've been able to show over the years that there's reduction in overall brain volume, that there are malformations and reduction in gray and white matter in the brain. The corpus callosum, which is the structure of the brain that interfaces the left and right hemisphere and allows for integration and transfer of information across the hemispheres, is often altered or missing. There is reduction in volume of the cerebellum, which is involved in motor functioning and balance, and the basal ganglia, which is involved in a lot of different things. We also see alteration in activation, and you see down here a graphic from a task where we asked them to do a relatively simple task in an imaging machine, and here are the controls, and then here are the individuals that were dysmorphic with a history of prenatal alcohol exposure, and you can see how much more energy it takes for them to recruit to complete this very simple task. And then here is a group who are nondysmorphic but had a history of heavy prenatal alcohol exposure, and you can see very clearly they also have greater activation. So even though they're not showing the physical signs, there's clear evidence that their brain has been affected by that prenatal alcohol exposure. We also are starting to see alterations in the functional connectivity of the neurons or in the systems that are working together, not just individual brain structures. And this is another graphic that shows just evidences of volume differences in individuals with a history of prenatal alcohol exposure, and this is what we do when we compare those that are alcohol affected to controls in overall brain volume sizes, and all the white areas that are colored in are specific areas of the brain that were smaller in individuals who are alcohol affected. So you can see there's a big, strong hit from that prenatal alcohol exposure. We then go back and say, well, which of these areas show a differential deficit? Because over and above that general IQ hit, we see specific areas that really cause interference with their functioning, and so we find specific areas even over and above the overall brain size as a factor showing differential effects. And then here again is that dysmorphic group where we're seeing very clearly that even though these kids have no physical dysmorphia, that their brains are altered as a function of the prenatal alcohol exposure. And this is a study that came out of our lab a while back, and the only reason I'm showing it to you is to understand the brain structure. This is the corpus callosum, and we're looking at the microstructural integrity along this index and then processing speed on a standardized intelligence test, and you can see there's a very strong correlation between the brain damage and their performance on that cognitive test, and the correlation was 0.85. This is some of the newer stuff that's coming out of our lab. This is diffusion tensor imaging, tractography, and the purple area represents-and this is the brain, the midline of the brain-the purple area represents the area we were trying to study, and the pink area represents the differences between the controls and those that are alcohol affected. And again, you can clearly see the midline of the brain, that corpus callosum area that's involved in integrating information that's heavily impacted. What are visual-spatial impairments? A lot of people don't have a good understanding. If I tell you they're language deficits, you have a good understanding of that, but when I tell you they're visual-spatial impairments, a lot of people don't. It influences your memory of visual information, your ability to perceive information, so if I'm sitting across from you frowning and I don't pick up that frown very well, then I'm going to be impaired in how I interact with you. It affects your visual-motor integration, which involves hand-eye coordination, your spatial memory, and we see how this impacts everyday symptoms such as they're not able to plan drawings or constructions well. One of the biggest and most aggravating for their interaction with the world is this perception of quantity-and that includes time, size, distance, and intensity-get them into trouble all the time. They also have problems differentiating right from left and problems aligning numbers in columns, which hugely impact their ability to perform math. Again, I'm not having a lot of time to talk about academic achievement-that's an important thing in keeping them out of the legal system if we can keep them in the schools. They also have memory impairments, including difficulty recalling recently learned information, which is incredibly aggravating for parents and teachers because you teach them one thing and they know it one day but they don't know it the next. They need frequent reminders. They have difficulty retrieving information, so the way they store information is not well organized. They often lose or misplace things, and they have working memory impairments. What's called the mental sketch pad, and if I tell you the mental sketch pad and I ask you to say your phone number backwards, you're going to use your working memory skills because you have to hold in the information in the right direction and then invert it. That affects things like if you're learning to count: you have to go 1, 2, 3, 4, 5, 6, and you've got to keep that chain of numbers going, plus you also have to keep in your memory what numbers I've counted or not counted, and that becomes a huge challenge for kids who have deficits in this area. And then it becomes even more complicated when I put the items in random order like this, and then you have spatial deficits with keeping track of memory of what I've counted or not counted. Again, executive function deficits have been found over and over again, and I think we are just starting to appreciate the importance of the outcomes for alcohol affected children. We can assess elements of executive function skills that start as early as infancy, and this is from a study we're doing in the Ukraine that looks at early attentional regulation in the preschool period where they have to pick out colors and shapes, and then later when they do progressive planning tasks that look at their planning skills. But executive function involves regulating basic attention, learning to focus and encode information, planning and organizing information, mentally manipulating that information, changing a strategy once you've learned one thing, abstract reasoning, and then generalizing that knowledge. And we know all of these areas are affected by prenatal alcohol exposure. Now, I'm going to switch gears and review the cognitive effects. I'm going to talk now about the behavioral regulation or behavioral dyscontrol effects. And again, we see the early signs of dysregulation even in the infancy period where we see that they have trouble handling normal stressors, where they get very upset, over-aroused. We see sleep disruption-that's a huge complaint that we get from parents who come into our clinic. And also some negative affectivity, so they just in general can be described sometimes as being irritable and fussy. Later on then, the signs of dysregulation are the things you're probably more familiar with: externalizing disorders, the attention deficit disorders, the conduct disorders, substance abuse which will come in to interface with the law, and then overt legal difficulties. This is the stuff I find incredibly exciting and I know you might not all want to see all this brain stuff, but I think it's very important to understand that there is a neural basis to why they're having trouble with this. This is a map that was proposed to represent the reward and attentional control systems of how we function as human beings. If you think about it, the red here indexes a network of firing that is involved in coding the emotions in our decision making. So all of our decisionmaking is influenced by how much we like something or don't like something, and that component gets processed here. In green are the regions that are more in our, sort of what we call cold executive functioning or cold thinking about it, where we evaluate and think through those consequences. And then the yellow are the areas that interface these two systems, and one says, "Calm yourself down and think this thing through." What we know from the research on the brains of kids who are alcohol affected is that all of these areas show differential deficit. It's quite amazing and actually in the paper I presented for this-it's in your flash drive, you can read more details on it-but you'll see differences in size, you'll see differences in activation, you'll see differences in the connectivity between these, and also differences in the metabolic characteristics of these areas. So how do self-regulation deficits impact on learning and involve them having problems in society? First, they have impairments in what's called affective switching, so if they learn a positive association between one thing, it's very hard for them to shift and learn something new. That tells us we have to teach them right the first time. They also have trouble coping with negative feedback, so if we tell them "You did it wrong," their emotional arousal system gets so that it's hard for them to calm themselves down to then learn something new. They also have difficulties with handling over-stimulation, and below here are some findings that sort of support that in the experimental sense, but in the clinical sense. I get this a lot where families come in and they complain a child is not doing well when they go out to a store and they get over-aroused and excited and their eyes glaze over, and they've shut off that cold problem-solving network and only the emotions are controlling the child at that point. So now we know there are deficits in cognitive functioning, there are deficits in behavioral and emotional control systems. How does that affect their adaptive function? Well, there are a few domains that are commonly studied in adaptive function, and I'm just going to review this for you fairly quickly. We do see communication deficits-they happen very early on-and sometimes later on, we don't see the language stuff being as affected unless we sample specific areas, and that's the pragmatic or integrative use of language. And I had a client just last week actually, the family came in and were telling me that the child had been targeted for tutoring services, and the child was very invested in her academic achievement, which is a good thing, they're very loving and caring parents, so they were explaining to her softly that it was going to help her get ahead, at which time she became devastated and looked very distraught, and the father asked her, "What's wrong," and she said, "Why do I need another head?" Again, taking the language very literally. They also have impairments in independent living skills, so problems with basic life skills: dressing, toileting, learning rules of personal safety, and protecting themselves. And the other one that aggravates everybody is telling time and organizing their daily schedules. They have deficits in adaptive function, but it's almost the opposite of autism. If any of you are familiar with autism, they tend to be-in FAS, they tend to be overly friendly rather than asocial; they have difficulty reading the social cues and getting feedback; they also have trouble understanding the social consequences. And these effects seem to be there independent of the facial dysmorphology. Their overall IQ can't explain it, and it can't be predicted just by their problem behaviors alone. So there's particular areas they have trouble here. And then in motor function, we see deficits in neonatal and toddler motor function. That's often the first sign clinically that we can document, just because of the nature of tests. And then later, motor skills such as visual-motor integration, fine-motor skills, balance and clumsiness, and then also some increased motor tremors. This is a really complicated graph, and the only thing I want you to pay attention to is, this is the alcohol-affected individuals over time, over age, this is the age for their adaptive skills, and you can see relative to a group of controls in ADHD kids that what happens with FAS is that you see a relative decline relative to their peers over time. So as they age, their adaptive skills seem to get worse relative to their peers. And again, I think that's a big burden relative to how executive function skills are coming into play and how one functions in society. This is a graphic that documents interventions that are needed for kids with fetal alcohol syndrome, and a concept I hope you go away with is the burden of care because this is incredibly important for the legal system. They need services in all of these domains, and it'll vary from child to child depending on the nature of the impact, but they definitely have a huge burden of care. One of the things that's important to know is we know that the impact of prenatal alcohol exposure is not a static thing that happens after you're born, that there's a huge range for neuroplasticity and recovery of function. We know this from how different environmental factors and universal protective factors have influenced development. So here have been identified some things that commonly occur that can negatively affect a child if it was born to a mother who's abusing substances. So there's often a death, loss of custody, and then a variety of other negative factors. But we also know from NADD's work that there are universal protective factors as well, so the environment has a huge impact. We have been doing intervention studies and we know that we can make a difference. This is some work that we did showing improvements in behavioral function as a function of those interventions. Most of the intervention studies have been very positive, as long as you adapt them to appropriately accommodate the brain damage. This is a graphic that shows the child had already gone through a year of kindergarten and occupational therapy, and after participating in our MILE intervention where we worked on his metacognitive control and taught him ways to deal with his visual-spatial deficits, his ability to write his numbers at post-test one and then 6 months later. I'm going to end on two things real quick. One is-no state has the capacity to meet the needs of the alcohol-affected children. In Georgia, we see about 250-300 kids, and if you estimate the prevalence of FASDs, there must be about 73,000 there that are in need of care. Many states have no capacity. We get referrals from Alabama, Florida, Tennessee. Many of the individuals go undiagnosed and untreated, and we have a tremendous need as a society to build the capacity to provide care. Otherwise, they're going to end up in the legal system. So that's why I'm going to leave you with this concept of burden of care; if we know that the postnatal environment has a huge impact on the recovery function, then that leaves us with two burdens. One, we have to think about that burden of care when we think about placement for that child, and then we have to think about making sure that these individuals have access to treatments that will rehabilitate them and facilitate recovery function. (applause) Good morning. I'm Dr. Natalie Novick Brown. Pleased to be here. I am the Program Director for FASD Experts. To my knowledge, we are the only forensic FASD assessment team in the country, although we're trying to train individuals in various parts of the country so we're not the only ones. We have found in our 5 years of working together-there are four of us on our team-that FASD is relevant across the legal spectrum including victims, vulnerable victims; witnesses in terms of their testimony, the validity of their testimony; and of course, defendants. And with regard to defendants, FASD is relevant in every phase of the legal process, beginning at the very beginning with competency and rights waiver issues, and extending all the way through mitigation and beyond mitigation in the appellate context as well. In your packet, actually in your green brochure this morning, you'll find one of the government publications on FASD and its relevance in the legal community. And, in particular, pay attention to-on the left side of this document that's in your packet, the government has pointed out that it's primarily the executive function deficits that affect individuals in terms of their legal behavior or their illegal behavior. Although the prevalence estimates indicate that FASD is about as prevalent as autism-about 1percent across the spectrum-those of us in the legal community and the forensic community feel that it's much larger than that. We did not realize until actually the mid '90s with a major groundbreaking study at the University of Washington that FASD had such relevance in the legal context. In fact, if you look at the bars on this graph, this graph depicts adverse life course outcomes due to prenatal exposure, and the third set of bars, trouble with the law involves individuals with FASD who are arrested and/or incarcerated and convicted throughout their lifetimes. The results of this study indicated that about 70 percent of folks with FASD are arrested at least once in their lives. Put another way, a recent study- hot off the press actually-has found that youths with FASD are 19 times more likely to be arrested, to be caught up in the criminal context, than those without this kind of brain damage. Part of some of the research that was done in the 1990s found that individuals with FASD are most likely to be involved in, first, lower level crimes-thefts, that kind of thing-but also in assaults involving impulse control, aggression control, and then finally, sexual crimes as well involving boundary problems, so physical boundary issues and lack of understanding of our laws, essentially. Screening for FASD involves a variety of factors, looking first at the birth mom. Many of these factors relate to the difficulties that poverty presents in terms of what we see in our cases, but I also need to point out and it's important to realize that birth moms might not come from low-income areas or might not be prostitutes, might not be alcoholics. They can be middle-class closet drinkers, these women; or young women who party a lot before they know they're pregnant, drink four or five drinks on occasion a few times early in the pregnancy before they get confirmation that they are pregnant. In terms of childhood factors to be on the watch for, Dr. Kable has already gone through a number of these things, but one thing that I want to point out is that we look for discrepancies in some of the test results. For example, third from the bottom there you see the academic achievement is not on the same level as the full-scale IQ would predict, so differences between expectations based on IQ and what you actually see in terms of academic performance; and also significant behavioral difficulties that begin early in school, often in kindergarten or even in preschool. Adolescents and adults begin to display the adverse life course outcomes that were depicted on that chart, including criminal conduct, and criminal conduct can start very early in life, in elementary school years. In the clients that we assess we see some typical factors in terms of the prior history, the prior criminal history. In many of these cases, individuals with FASD will start out typically with theft type crimes, there's lots of running away, and also there's a common theme that seems to pervade our cases: the offenses don't really make sense, many of them don't make sense and they tend to be opportunistic. For example, stealing something of very low value with a high probability of detection. Our clients also have considerable difficulty obeying probation rules, so lots of probation problems. When you start interviewing clients with FASD, there are a couple of different presentations that tend to pervade our cases. The lower IQ folks, those individuals with IQs in the 70s and lower, will be very childlike and very compliant. They will tend to be your favorite clients. Those with higher IQs, however, will be your least favorite clients. They tend to be extremely stubborn and difficult to work with. And then there are other factors involved in some of the screening elements that we typically see in the legal context, and one of the biggest problems that occurs is because of the memory impairments is a tendency to confabulate, to fill in information for missing memory elements. With regard to the incident offense itself, and I should note that most of our cases involve death penalty context, although we do work in other contexts as well. We typically see not too much planning; there will be some planning but no or very little contingency planning. No consideration for how not to get caught, for example. A lot of times the capital murders that we assess involve overreaction, aggressive behavior; it's an overreaction to perhaps misperception of what's actually happening in the environment. Also, there is a tendency, a very significant tendency among folks with FASD to be followers, not leaders, so they are very prone to manipulation by more sophisticated folks, and they often take the fall if they have co-defendants. There's a tendency as well for individuals with FASD to try to cover up their deficits with a lot of bravado and braggadocio, so we often see that in our cases. Post-arrest, almost all but not all cases, individuals with FASD will easily waive their rights. They're manipulated easily during questioning, although they might initially deny responsibility, they can be manipulated and are manipulated to give confessions, sometimes over-confession and false confession. Another aspect about FASD that's important to be on the alert for is affect that doesn't match the severity of the situation, la belle difference or kind of a lackidaisical reaction to what's going on-"flat affect," we call it. And this is what we see in terms of cognitive presentation. Our team is composed of-our multidisciplinary team has a medical director who looks for the physical manifestations of FASD and our neuropsychologist looks at the mental characteristics of FASD. This chart depicts all of the tests that Dr. Paul Connor gives our clients, and you'll note on this chart what we typically see, which is a patchy representation or presentation with some peaks and valleys in terms of how the clients do on these neuropsychological tests. The green horizontal bar is zero standard deviations or the mean, and everything above the mean is above the green bar. And then below the red line, the red line reflects one standard deviation below the mean and that is indicative of the criteria for FASD diagnosis. So everything below that red horizontal bar is a deficit, and FASD diagnostic criteria require deficits in at least two domains, and in this particular chart you see deficits in several domains of functioning. All of the screening factors that I reviewed very quickly this morning are included in your green program book this morning, and it's an easy one-page checklist that might help you when you're meeting clients, trying to determine whether there might be an FASD. As I noted, the standard of care is multidisciplinary assessment; this is a medical diagnosis that falls on Axis III. It's not a mental health diagnosis, although it does involve mental health problems and conditions that can be diagnosed as well. This is our forensic team: on the left is Dr. Connor, our neuropsychologist; on the right is Dr. Richard Adler, and he is our psychiatrist and a medical doctor and our diagnostician. And next to me is retired Judge Tony Wartnik who will be addressing you later this morning, and Tony is our legal consultant and advisor. I am the functional psychologist for the team and I look at the lifelong behavior as well as the incident offense behavior. I address the nexus, in other words. FASD has made a difference in our cases, in the competency context when judges recognize the executive function deficits that contribute to incompetency; and also suggestibility which is a major factor, hypersuggestibility in FASD; and also in the mitigation context as well. We have done cases-many cases in the appellate context that are still winding their way through the process. Thank you very much. I appreciate your attention. (applause) And now we have a few minutes for questions and answers before we go to our next section. So are there any questions out there? Is someone going to address the issue-you kind of touched on it- but the issue of comorbidity and what we see in terms of someone who's on this spectrum, the typical other, maybe even an Axis I diagnosis that would be comorbid with fetal alcohol spectrum disorder? We are as a science working towards getting the psychiatric community a framework to try to understand those associated conditions with fetal alcohol syndrome and fetal alcohol spectrum disorders so that we prevent some of the misdiagnosis. Because I agree there's an enormous amount of misdiagnosis and there's a lot of evidence that suggests some of those traditional pharmacological treatments are not very beneficial, and a lot of the kids, we see a lot of medication abuse in our clinic, these kids are put on medications and then they add another one and they keep adding, so you end up with a 4-year-old on four or five medications... The second question I had has to do with the stigma attached to this disorder and self-reporting and the problems you have with self reporting at birth or shortly thereafter. Included with the tools that you were just speaking about, do you have early intervention tools that can be used by..., in the context of what I do, Part C and early Part B IDEA cases, so that if a student is not progressing as they should be and a parent brings the student in, and maybe the pediatrician refers the student to a school district. Are there tools that can be used widely, early intervention tools to help multidisciplinary or transdisciplinary teams to effectively identify this particular disorder so that appropriate interventions can be utilized? There are some screening tools that are available. Unfortunately, you always run into what are the social complications associated with disclosure. And I personally have been involved in situations where the state has wanted to use the mother's acknowledgement of drinking and the clinical diagnosis of FAS in a punitive way, and I try to advocate within the court system the model of having the burden of care, and so I don't want to necessarily take the child away because she drank during pregnancy, but I want you to establish that she can meet the burden of care now, that she's identified the problem and can there be recovery. I'm thinking more along the lines of large, urban school districts where there isn't going to necessarily be that criminal justice system stepping in. I'm really thinking about it from the educational perspective of we're going to do a lot of screening at the very beginning. Is there anything out there that you're aware of that- I represent school districts-so I could bring back to my clients and say, "You might want to start using these screening tools when you do your first assessments, because it's going to be very beneficial to future programming." Let me just make one point for the Department of Education. Educators are not interested in a diagnostic category. They're only interested in the impairments the child has. That's the philosophy of the Department of Education. Next question? I just have a couple of questions. The first one is-I can validate that this has not been diagnosed in the juvenile justice system. I've seen thousands of evaluations done by OJJ and I have never, ever seen a diagnosis of fetal alcohol syndrome, yet watching this I just recognize it in hundreds of clients. So is this something you think is deliberately evaded or just something that out of lack of knowledge? Obstetricians tend not to ask women about whether they drank alcohol during pregnancy, or if they do ask them, they say, "You don't drink alcohol, do you?" And that obviously does not come up with a positive answer very frequently. There's no communication therefore between the obstetrician and the pediatrician about whether this woman was drinking during pregnancy, and the pediatrician doesn't-I'm a pediatrician-we don't do a very good job of doing a physical examination in the newborn period. We do a 2-minute examination, but this is a diagnosis that requires 15 or 20 minutes at a minimum to really do appropriately, and with a screaming newborn it's very difficult to do. So a lot of these kids get missed purely as a function of the lack of information and the lack of ability to do the physical examination in the newborn period, and then they get pushed-oftentimes this diagnosis does not become obvious until kids are in the first grade or even older in school, and so people get pushed under the rug as far as this is concerned. It's a terrific problem, terrific problem. One of the areas of resistance we got for years was the fact that we didn't have specific treatments, so why bother even making the diagnosis? And we got that feedback from a lot of the medical community, a lot of the psychological community. In the last decade we've been able to establish that we can make a difference with our interventions, so I think we've removed that excuse. And I think, us being here, and we've had a big meeting with pediatricians, we are actively trying to increase awareness so people will start to identify this, because I think the impact is actually quite incredible on society, people are just completely unaware of what's going on. Thank you. Now let's move to our last question before our next session. My question has to do with the intervention and prevention. I know there are a lot of organizations that are working with Healthy Mothers, Healthy Babies. But in terms of the judicial system, what programs, if any, have been implemented to work to prevent-say, for example, when you have a DUI mother-are there any success stories that, in a nutshell, you could tell us about? There's social work. The head of the Department of Social Work at San Diego State University, Dr. John Clapp has been doing work in emergency rooms throughout the city of San Diego, or the county of San Diego, to identify alcoholic women and try to get them into programs that can help them. So there are things going on about this, but they are precious few, I think. Thank you. Please join me in thanking our first panel. (applause)