There are several widespread misconceptions that can be detrimental to understanding the complicated life circumstances of individuals with FAS/FAE and responding appropriately to their needs. Before people can effectively help these individuals, they must understand the true nature of their disability. The following seven statements that are frequently assumed to be true are, in fact, common misconceptions:

1. MYTH: People with FAS/FAE always have mental retardation. Although it is true that FAS/FAE is caused by prenatal brain damage and every person with FAS/FAE has specific, individualized cognitive strengths and weaknesses, not all people with FAS/FAE have mental retardation. For example, as one study (Streissguth, Barr, Kogan, & Bookstein, 1996) found, only 25% of 178 individuals with the full FAS were classified as having mental retardation by an IQ score below 70. In fact, it is possible for an individual with FAS/FAE to have an IQ score within the normal range (see Figure 6.2). FAS/FAE diagnostic centers, such as the one at the University of Washington Medical School, see individuals with broad spectrum of IQ scores (Clarren & Astley, 1997). Only the most severely affected children — those with clear microcephaly and other physical malformations — are easily detected at birth (see Darby, Streissguth, & Smith, 1981).
   
   
2. MYTH: The behavior problems associated with FAS/FAE are the result of poor parenting or a bad environment. Because people with FAS/FAE are born with some brain damage, they do not process information in the same way as most people and do not always behave in a manner that others expect them to. This brain damage, in fact, can permeate even the best environments to cause behavior problems and present parenting challenges. Parents and caregivers need help and support, not criticism. Of course, a loving and understanding environment helps a child with FAS/FAE. But its absence isn’t the primary cause of the disability.
   
   
3. MYTH: Admitting that children with FAS/FAE have brain damage means that society has given up on them. Some people believe that acknowledging the brain damage that accompanies FAS/FAE will depict these individuals as hopeless and devoid of treatment options. Yet, society spends millions of dollars developing treatment procedures for children born with more obvious birth defects and for people sustaining brain damage in more noticeable ways (e.g., auto accidents). As of 1997, the research to understand and ameliorate the specific neuropsychological and cognitive impairments associated with FAS/FAE has not yet been conducted. These individuals are in no way hopeless, but their needs have been sadly overlooked in the allocation of societal resources.
   
   
4. MYTH: Children eventually outgrow FAS/FAE. FAS/FAE lasts a lifetime, although its manifestations and associated complications vary with age. Children with brain damage (including those with FAS/FAE) usually require a longer period of sheltered living, and many need a stronger than usual support system to achieve their best level of adaptive living. Understanding this can help families plan effectively for structured transitions between school and work and can help them spare their children with FAS/FAE the expectation that they should be or must be independent at age 18 or that it is shameful to ask for help.
   
   
5. MYTH: Diagnosing children with FAS/FAE will thwart their development. Diagnosing is the art or act of recognizing a disease from its symptoms. At a practical level, it is a method of grouping people with some common characteristics together so others like them can be identified, the cause can be identified, and treatments can be provided. The problem is not the diagnosis but the current lack of scientific knowledge about how to treat the disease. An accurate diagnosis does not thwart development in any way whatsoever; it simply alters unrealistic expectations. Most individuals who are diagnosed, and their families, actually feel a sense of relief.
   
   
6. MYTH: It is useless to diagnose FAS/FAE because there is no “real” treatment approach. This attitude isn’t taken toward any other incurable diseases (e.g., childhood autism). Why should it be invoked for FAS/FAE? Any family is in a better position to raise a child once members know the child’s diagnosis. Once an individual is diagnosed with FAS/FAE, family members and social services workers can customize developmental approaches and goals to ensure that the individual reaches his or her personal potential. A diagnosis helps everyone understand behaviors that would otherwise be incomprehensible and helps families explain these behaviors to others and to respond more appropriately themselves. A diagnosis helps families build networks of support with others experienced with FAS/FAE. Parents and the individuals themselves need diagnostic information in order to behave rationally and respond realistically. In addition, when no treatment is known, then the acknowledgment of people with this diagnosis motivates the development of appropriate treatments and remediations. Diagnosis provides visibility, and visibility prompts solutions.
   
   
7. MYTH: People with FAS/FAE are unmotivated and uncaring, always missing appointments or acting in ways that society considers irresponsible or inappropriate. People with FAS/FAE usually care tremendously about pleasing others and want desperately to be accepted, but their basic organic problems with memory, distractibility, processing information, and being overwhelmed by stimulation all work against their desires. They simply have difficulty understanding the meaning and interrelationships of a complex world that complicate their daily lives. In addition, the repeated experience of failing to meet expectations can generate a general reluctance to meet challenges, even in someone with the best intentions. Some people with FAS/FAE are now learning strategies and techniques for working around these problems.

References

Clarren, S.K., & Astley, S. (1997). The development of FAS diagnostic and prevention network in Washington State. In A. Streissguth & J. Kanter (Eds.), The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp. 398–49). Seattle: University of Washington Press.

Darby, B.L., Streissguth, A.P., & Smith, D.W. (1981). A preliminary follow-up of 8 children diagnosed with fetal alcohol syndrome in infancy. Neurobehavioral Toxicology and Teratology, 3, 157–159.

Streissguth, A.P., Barr, H.M., & Press, S. (1996). A Fetal Alcohol Behavior Scale (FABS) for describing children and adults affected by prenatal alcohol exposure. Alcoholism: Clinical and Experimental Research, 20(Supp. 2), 73a.