What Makes Teens With FASD Tick

Teens With FASD:

What Makes Them Tick?

I loathe the expression "What makes him tick." It is the American mind, looking for simple and singular solution, that uses the foolish expression. A person not only ticks, he also chimes and strikes the hour, falls and breaks and has to be put together again, and sometimes stops like an electric clock in a thunderstorm. ~James Thurber

The teen years are difficult for most families, for the teens as well as the parents. Caught between the innocence of childhood and the accountability of responsible adulthood, teens want to be independent and desire to be treated like grown ups but are far from being in control of their behavior, much less their lives. Having raised three teenagers, I can personally attest to the myriad challenges that parents of teens face. Having raised my son John with Fetal Alcohol Syndrome (FAS) through infancy, childhood, and the teenage years, I can proudly say I have earned my “Ph E” (Parent having experience) in FAS. I have witnessed more tantrums, outbursts, impulsivity, hyperactivity, and inappropriate social behaviors than I care to remember, and they were most challenging during John’s teen years. I found myself often asking “Why does he do this?” Of course, I constantly reminded myself that he has FAS, but I really wanted to understand the difficult behaviors in an effort to help him and everyone else survive those difficult years.

Parents of teens with Fetal Alcohol Spectrum Disorders (FASD) sometimes feel like they are living with an explosive bundle of emotions that may go off at any moment. Sometimes it is hard to predict their behavior, and even more difficult to understand it. Some describe the teen years as a return to the “terrible twos” and for parents of teens with FASD, the challenges are even greater (Streissguth, 1997). One of the key strategies I have discovered to successfully parenting a teenager with FASD is to understand how the brain functions, both in healthy individuals and in those affected prenatally by alcohol. During the teen years, the brain is undergoing tremendous transformation. Let’s look at what research shows us about the development of the teenage brain in general and the function (or dysfunction) of the brains of children and teens with FASD.

There is a pruning of brain cells that takes place during the last trimester of pregnancy, and again during puberty and the teen years. Prenatal alcohol can kill brain cells and may have a significant effect on this pruning process. (Gogtay et al., 2004) In healthy individuals, the pruning process during pregnancy causes a loss of brain cells and during adolescence a loss of brain cell connections that results in 15% less gray matter of the brain (Wallis, 2004).

How do we know this? Scientists use sophisticated electronic instruments to look at the brain and how it works. An MRI (magnetic resonance imaging) is a laboratory tool that shows brain structure. An FMRI (functional magnetic resonance imaging) measures and maps brain function (Wikipedia, 2004). It is helpful to understand the connection between the brain and behavior and to examine recent findings from researchers who use brain imaging and other methods to discover how the brain works.

Executive Functions: The concept of executive functioning refers to deliberate actions that require the ability to hold and manipulate information (working memory) and to focus on one task at a time (attention). The term generally refers to cognitive functions of our brain used in planning ahead and guiding our behavior to efficiently and effective achieve a goal. The prefrontal cortex part of our brain controls these executive functions, which include self-motivation, organization of thoughts, ability to plan ahead, setting priorities, suppression of impulses, decision-making and judgment, and the ability to weigh the consequences of our actions (Chun, 1999). Executive functioning is impacted by the pruning process in adolescence (Wallis, 2004). For teens with FASD, the impact of brain-cell pruning is even greater, as prenatal alcohol exposure causes impairment of the executive functions. In fact, individuals exposed to alcohol prenatally who have mild physical symptoms have similar deficits of executive functioning when compared to children with full Fetal Alcohol Syndrome (Kodituwakku et al., 1995).

Memory: A New York cab driver, who has to remember locations and streets and directions, is likely to have an MRI that shows an unusually large hippocampus, a brain structure involved in memory (Wallis, 2004). The hippocampus is one of the areas of the brain that is affected by prenatal exposure to alcohol. My son John’s short term memory is so impaired that he may lose an important thought if he is required to wait to express it for longer than two minutes. This results in constant interruptions when he has the frequent need to tell me something important. And it means that he may forget a task within minutes of a simple assignment. He also forgets rules and the consequences that may result in the infraction of those rules. He requires constant cues to perform daily tasks such as taking medication or saying “excuse me” prior to an interruption.

Social Cues: Being able to read other people’s facial expressions is a skill that uses the amygdala and the frontal lobes (Baird et al., 1999), both areas of the brain that are vulnerable to damage from prenatal alcohol exposure (Mattson & Riley, 2001). Someone with FASD may confuse an expression of fear as anger or hostility. This could lead to inappropriate reactions that could result in negative consequences. If John engages an attractive store clerk in friendly conversation and she responds with a smile, he may misinterpret this as flirtation or romantic interest. Because John is not good at reading social cues, he must have someone responsible with him at all times in social situations.

Risk Taking: A person who is immature or young is likely to engage in risky decision making and high-risk behavior when with other immature or young people. A person whose decision-making skills are already impaired by prenatal alcohol exposure may be even more likely to engage in risky decision making, even in adulthood (Streissguth, 1997). John does not seem to be capable of weighing the pros and cons of making a decision, and frequently miscalculates his odds of having a successful outcome because of thinking “maybe this time I won’t get caught” or “maybe this time it will work out okay.” John’s risky decision-making behavior could result in harm to himself or others, such as injury, assault, arrest, abuse, or death.

Behavioral Difficulties: The behavior problems observed in children who are prenatally exposed to alcohol are related to deficient skills in both the cognitive and emotion-based executive functions (Mattson et al., 1999). It is becoming increasingly apparent through recent research that deficits in social behavior are related to prenatal alcohol exposure (Kelly et al., 2000). Because of difficulties with social behaviors, many families that have children with FASD find they must give up social outings such as family reunions or church picnics because the challenges of monitoring the child or teen take away any pleasure to be derived from attending social functions. Even getting away for an evening or a weekend without the children is difficult, as there is a shortage of respite providers who are trained and willing to care for children or teens with FASD.

Attachment Disorders: Parents of children with FASD report that they have difficulty with healthy bonding and attachment. The children seem to form social attachments quickly, and break them just as easily. They tend to be inappropriately friendly and do not have a good sense of “stranger danger.” It has been assumed in the field of social sciences that attachment disorders result primarily from poor parenting and lack of proper bonding in the early months of a child’s life outside the womb (Bowlby, 1980; Rutter & O’Connor, 1999). However, deficits in attachment behavior are seen in both alcohol-exposed humans and animals, suggesting that these changes are primarily the result of the prenatal exposure to alcohol rather than maternal behavior (Kelly et al., 2000). It took many years for John and I to form a health parent-child bond, in spite of his growing up from infancy in our nurturing, stable family. John will bond quickly and easily to an interesting stranger, although the attachment is superficial. This places John at risk of becoming involved in unhealthy relationships or being drawn into high-risk groups.

The human brain is not fully mature until age 25 (Wallis, 2004). This is about the age that parents report that they begin to see their adult children with FASD settle down and reach their emotional and social potential. Parents of typical teens are advised to provide structure, help with organizing their time and scheduling, monitor their social relationships, and guide them through decision making. Parents of teens with FASD know that these strategies are even more crucial in helping their children safely make it to adulthood, and throughout their lifetime.

It is critical to understand the neurological aspects of FASD in order to implement effective strategies. Because of the nature of FASD and the brain damage caused by prenatal exposure to alcohol, many affected individuals have such difficulty controlling their impulses and have such poor judgment, that most will require close supervision or at least frequent monitoring well past their teen years. Having come to a reasonable understanding of the behaviors observed in teens with FASD, parents must then come to terms with the possibility of facing a period of never-ending adolescence. The “terrible teens” could last into the “terrible twenties.” That prospect would strike terror in the heart of any parent. However, I have discovered, as have other parents of teens with FASD, that sometime before the age of 30 our young adult children seem to mellow out emotionally and socially. Their cognitive abilities may not improve with age, but their emotional behavior and social skills appear to finally become tolerable and this allows them to engage in social and employment relationships with limited success. Their ultimate success will be fragile and will depend on continued guidance and close monitoring that might require a one-on-one mentor or job coach and the presence of an “external brain” in social situations. An “external brain” is a concept coined first by FASD expert Sterling Clarren and later made popular by FASD speaker Susan Doctor.

In adulthood, prenatal alcohol exposure is related to high risk situations such as getting into trouble with the law, exhibiting inappropriate sexual behavior, having clinical depression, suicide ideation and attempt, and inability to properly care for children (Streissguth et al., 1996). These findings suggest that there may be fundamental problems related to alcohol exposure in the social domain of brain function (Kelly et al., 2000). Because I am acutely aware of these secondary high-risk situations, I have made great efforts to ensure that John is protected from the painful consequences that befall most adults with FASD.

Another key to successfully navigating through the teen years to adulthood for individuals with FASD is their having a good understanding of how and why their brain functions as it does and accepting the reality of life with FASD. This has helped my son and many other young adults with FASD to accept the presence of an “external brain” in their lives. This measure will ensure their health and safety in a world that can be full of risks for people who have normal adult appearance and intelligence but have child-level decision-making capacity.

It would be prudent to add a third key of understanding, which is the accepting attitude of others in the community, including extended family members, neighbors, teachers, medical professionals, care providers, and others who might have an opportunity to interact with the teen or young adult who has FASD. As author Dian Smith (1991) wrote, “Parents’ accepting attitudes can help children learn to be open and tolerant. Parents can explain unfamiliar behavior or physical handicaps and show children that the appropriate response to differences should be interest rather than revulsion.” If those who learn about FASD take an interest in understanding alcohol-affected individuals, and help children and others to understand and accept the unusual and sometimes inappropriate behaviors of those who might be affected by alcohol exposure, the community will become a FASD-friendly environment for John and others like him.

As I take a bow for successfully navigating John from his “terrible twos” through his “terrible teen” years, I realize that I have used well all three of these keys. I educated myself about the neurological aspects of FASD, I helped John understand his own behavior, and I have enlightened every person in John’s life who would listen about the nature of his disability. Now that he has emerged from the teen years and is more than halfway through his twenties, he is a mellow, well-mannered, relatively mature young man. In one week he will be moving out of the family home into an apartment he has chosen, to live with a roommate who is a friend of his, to be cared for by agency-hired individuals who will be trained by me in FASD issues. I have finally figured out what makes teenagers with FASD tick, but my task is not done. I will continue to help John survive his adult years by training his new caregivers and I will continue to assist parents and professionals who care for children and adults with FASD through articles, workshops, and web projects.

One project I will pursue is an educational program for teens and young adults with FASD to help them understand themselves in hopes of their finding the same satisfying success that John and I now enjoy. I don’t know where the project will end, but I know when it began – with the publication of a chapter I wrote entitled “Broken Beaks and Wobbly Wings” (Kleinfeld, 2000). I’ll share my final words from that piece. “We might not be able to strengthen those wings, but we can strengthen the safety nets, and we can encourage our young to fly tandem, with mentors and coaches, who can accompany them as they discover all that life's expansive horizons have to offer.”

References

Baird, A.A., Gruber, S.A., Fein, D.A., Maas, L.C., Steingard, R.J., Renshaw, P.F., Cohen, B.M., Yurgelun-Todd, D.A. (1999, February). Functional magnetic resonance imaging of facial affect recognition in children and adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 38, 195.

Bowlby, J. (1980). Loss. Attachment and Loss:3. New York: Basic Books.

Chun, M.M. & Phelps, E.A. (1999, September). Memory deficits for implicit contextual information in amnesic subjects with hippocampal damage. Nature Neuroscience, 2, 9, 844-847.

Gogtay, N., Giedd, J.N., Lusk, L., Hayashi, K.M., Greenstein, D., Vaituzis, A.C., Nugent, T.F., Herman, D.H., Clasen, L.S., Toga, A.W., Rapoport, J.L., & Thompson, P.M. (2004) From the Cover: Dynamic mapping of human cortical development during childhood through early adulthood. Proc Natl Acad Sci U S A. 2004 May 25;101(21), 8174-8179.

Kelly, S.A.; Day, N.; and Streissguth, A.P. (2000). Effects of prenatal alcohol exposure on social behavior in humans and other species. Neurotoxicology and Teratology, 22, 143-149.

Kleinfeld, J. (2000). Fantastic Antone Grows Up. Fairbanks: University of Alaska Press.

Kodituwakku, P., Handmaker, N, Cutler, S., Weathersby, K. & Handmaker, S. (1995). Specific impairments in self-regulation in children exposed to alcohol prenatally. Alcoholism: Clinical & Experimental Research, 19, 6, 1998-2012.

Mattson, S.N., Goodman, A.M., Caine, C., Delis, D.C., & Riley, E.P. (1999). Executive functioning in children with heavy prenatal alcohol exposure. Alcoholism: Clinical and Experimental Research, 23, 1808-1815.

Mattson, S.N., Schoenfeld, A.M. & Riley, E.P. (2001) Teratogenic Effects of Alcohol on Brain and Behavior. Alcohol Research & Health, 25:3, 185-191.

Rutter, M. & O'Connor, T. (1999). Implications of attachment theory for child care policies. In J. Cassidy & P.R. Shaver, (Eds.), Handbook of Attachment: Theory and Clinical Applications, New York: The Guilford Press.

Smith, D. G. (1991). Parents' guide to raising kids in a changing world: Preschool through teen years. New York: Prentice Hall.

Streissguth, A., Barr, H. M., Kogan, J. & Bookstein, F. L. (1996). Understanding the occurrence of secondary disabilities in clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). (Grant No. R04/CCR008515, Centers for Disease Control and Prevention). Seattle, WA: University of Washington School of Medicines, Department of Psychiatry and Behavioral Sciences.

Streissguth, A. (1997). Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore: Paul H. Brooks Publishing Co.

Wallis, C. (2004, May 10) What Makes Teens Tick. Time Magazine:163, 56-65.

Wikipedia (2004, April 6) Functional Magnetic Resonance Imaging. Retrieved May 25, 2004 from the World Wide Web: http://en.wikipedia.org/wiki/FMRI

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