Arrested Conscience Development: A Core Disability Trait of FAS/E Jocie DeVries and Ann Waller The FAS Family Resource Institute has gathered the "Collective Family Experience" through formal surveys and retreats during the past ten years, along with ongoing input and response to our training and publications, and daily contact with families in crisis who call our phone line. This knowledge has given us the confidence to be able to describe a child’s behavior to the caregiver after a brief interview. We ask for information on the child in five basic areas: 1) gender; 2) grade in school; 3) IQ level; 4) if the child is adopted or in foster care, age at placement with the family; and 5) prenatal history. With this data we can say, "Let me see if I can describe your child." After we do, the astonished parent or caregiver typically responds, "How did you do that!" Consequently, according to the Collective Family Experience, there is definitely an FAS/E Behavior Phenotype.* The following unique cluster of traits of FAS/E was presented to the group of distinguished scientific researchers and federal agencies assembled by the NIAAA in March of this year. (For details of meeting, see page 2.) 1. The first core trait is an extremely exaggerated vulnerability to peer pressure. Since 1991 we have used the term, moral chameleon, to describe this phenomenon. Few mental health professionals or scientific researchers understand this trait because they do not see the patient twenty-four hours a day, every day, over an extended period of time, in different peer groups and environmental settings. The Collective Family Experience overwhelmingly confirms the moral chameleon trait regardless of the IQ level. 2. When individuals with FAS/E are aggressive against others or display volatile behavior, they do not have predatory intent according to the collective family experience. Their air of innocence is genuine, not contrived. If predatory intent is present, we have learned to consider that as a red flag of possible co-occurring mental health conditions. As mental health professionals begin to understand the lack of predatory intent as a core disability trait of fetal alcohol exposure, they will be better able to identify FAS/E and co-occurring disorders for which there are some effective medications and treatment. 3. The inability to understand the need for societal rules and cooperation is a core disability trait. According to the Collective Family Experience, the left and right brain hemispheres in people with FAS/E appear to function independently at times when they 'just don’t get it'. They remember the rules and consequences, and can quote them verbatim. But they are really clueless about predicting the results of their errant behavior. Since they do not 'feel' the rules apply to them, they are not obligated to obey them. So... cause and effect escapes their understanding. If the consequences of these broken rules are carried out, anger or rage against the enforcer is the common result. Arrested Conscience Development These three primary traits: exaggerated vulnerability to peer influence; volatile/dangerous behavior without predatory intent; and inability to see the need to follow rules, are what we mean when we say that individuals with FAS/E do not have a conscience and don’t feel remorse. The little 'conscience on the shoulder' reminding them of what is right or wrong is somehow mute under stressful conditions in individuals with FAS/E, similar to a drunk driver being oblivious to the rules of the road. When Michael Dorris stated they are without conscience or remorse, he was not saying they don’t have compassion or empathy. We do not mean that those with FAS/E are totally absent of feelings for others. Remember these traits exist without malice or intent. If one doesn’t feel responsible to follow the rules, there is no remorse in breaking them. The overall maturity level of conscience development is simply stuck in the egocentric stage, much the same as in a normal three-year-old. Since their whole world revolves around them, what need is there for social cooperation? We do not expect three-year-olds to act otherwise. We do expect teens and adults with normal IQ’s to act their age. For individuals with FAS/E this is impossible on a longterm, consistent basis. (We strongly encourage a neuro-psychological evaluation to document evidence of brain damage in affected individuals that have normal IQ’s.) The older they get the more obvious these traits become. Of course, there is also a broad range of severity in this disability and genetics, co-occurring conditions and bonding opportunities all impact conscience development. But all individuals with this disability have these traits in some measure. Risk Factors In a Newsweek article (Why the Young Kill, May 3, 1999) by Sharon Begley, a study is cited where the brains of 50 murderers indicated abnormalities. One of these malfunctions is that the brain’s supervisor (located in the prefrontal cortex) is slow. It is logical to conclude if the left and right brain hemispheres cannot quickly integrate sensory input, that the brain’s supervisor would not be able to work effectively. The researcher conducting the study, psychiatrist Daniel Amen, concludes that this type of damage can be caused by lesions, head trauma or prenatal alcohol exposure. We are NOT saying that every male with FAS/E will grow up to commit violent crimes or even be incarcerated. We ARE saying that it is frightening to consider that individuals with FAS/E are vulnerable to several of the high risk factors for violence (according to many studies) especially when, at birth, they already have neurological damage which disables reasoning and judgment! This is why the implications of these traits are not just interesting theories. Researchers must develop the methods to document these deficits in conscience development because this area of research is CRITICAL to the health and safety of our families and communities. We know that these kids can become dangerous, even predatory, if they do not have early and consistent intervention for: genetic vulnerabilities to alcoholism; a longterm, stable, loving home environment; protection from violence; and treatment for co-occurring mental health conditions. Protective Factors We also know from the Collective Family Experience and Dr. Ann Streissguth’s study (1996) that, even in spite of organic brain damage, early intervention from strong, nurturing parents can help curb tragic possibilities by providing opportunities for bonding with positive role models. In a more recent Newsweek article (Learning Right from Wrong, March 13, 2000) authors Sharon Begley and Claudia Kalb discuss conscience development. The basic premise is that conscience development begins in infancy with good bonding between mother and child. The child is cute, mother is engaged and plays with the baby, thus building a reciprocal, loving relationship. The first germ of conscience development noticeable by parents is usually empathy. The baby expresses compassion toward another child who is crying, then baby offers a favorite toy or blanket to comfort the other child. The authors report, however, that if a child moves into an environment where there is a lot of conflict and chaos, that same child is likely to lose that compassion for others. The second major step in conscience development seems to be strongly tied to what, and whose, behavior they observe during the next few years as they grow older. But even this minimal level of conscience development cannot consistently happen without understanding the innate disabled capacity to bond in babies with FAS/E. Without the official identification and diagnosis of FAE, unidentified individuals who are disabled are at higher risk for secondary disabilities, multiple placements in foster care, and attachment disorders which can lead to tragic results. In conclusion, these traits must be documented through scientific research so we can proceed with the development of the FAS/E Behavior Phenotype and build the foundation for recognition of ALL individuals disabled by prenatal alcohol exposure. One of Many Families These seemingly contradictory concepts (innocence and compassion, without conscience or remorse) are beautifully expressed in a letter we recently received from a mom in Minnesota: It is interesting how much is the same with FAS/E people, not how much is different. Our (white) 21 year old son, Jeff, who we adopted at age 5 with severe FAS has been a real challenge but who also has brought a great deal of joy to our lives. He presently lives in a home for Developmentally Disabled people with 3 other men, none of whom have the same diagnosis. He was the pioneer in our school systems with his condition. He is on [several medications, including a new one] after I frantically pleaded to his psychiatrist to give him ‘something so he doesn’t severely hurt or kill someone else or himself.’ I had had a nightmare that he was being led down death row and he kept turning back, looking at me and crying, ‘Mommy! Don’t let them kill me!’ Then there is our son, Brian, age 26, Native American, whom we adopted at age 7 years, ours being his 7th home! Brian was diagnosed with Down Syndrome, but he also has FAS/E. Brian is not on any meds. He does not get aggressive but he takes things that do not belong to him, and he lies at times. He and Jeff are very different - yet amazingly alike in some things. Both are very disorganized. Neither can remember where they have put anything. Both are very verbal, very social, but neither are verbally, socially acceptable. Both are very concerned about people- too generous, very caring. They are lots of fun to be with most of the time. Both are misunderstood by a lot of people who do not understand their condition. Both are our precious sons, who do not willingly cause problems, but because of their severe, incurable condition, escalate when they cannot stop. They are like butterflies, flitting from one thing to another, stopping but briefly to breathe the fresh air. * Phenotype - a description uniquely common to a particular group of people *********************************************************************** Research on Conscience Development: Where Do We Start? In 1981, Roger Sperry won a Nobel Prize in Physiology and Medicine for his split-brain research, which demonstrated that a function of the corpus callosum is to integrate information from both sides of the brain. Recent MRI studies on people with FAS/E typically show a decreased size of the major structures connecting the two hemispheres of the brain (basal ganglia, diencephalon, and the corpus callosum) according to Dr. Ed Riley and Dr. Sarah Mattson at San Diego State University. We believe there are enough similarities between the behaviors of individuals with FAS/E and the people described in the split-brain research to warrant pursuit of the connection between damage to these brain structures and the observed behaviors. Another promising research study was conducted by Adrian Raine at the University of Southern California on teens with arrested conscience development. These youth seem to be void of the typical stress responses to fear and violence, such as increased heart rate, overactive sweat glands, stomach cramps with a “gut-wrenching” aversion to violence. This lack of stress response in mid-teens was connected with a stunted conscience and a higher risk of later becoming a criminal. These are likely the type of individuals who can pass a lie-detector test when they are lying, because they do not have the normal stress responses, which the machine detects. Many individuals with FAS/E can also lie without measurable changes in their body language. Therefore we would encourage more of this type of research in the hope that it will further the ability to validate the arrested conscience development as a core disability trait in individuals with FAS/E.