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The Ferris Wheel Understanding FASD

November 1, 2006
by Coralee Pringle-Nelson, MEd and Garry P. Perry, MA
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Compassion, flexibility are important elements in treating young clients affected by prenatal alcohol exposure

Our current work involves providing treatment to adolescents and young adults who present with an array of struggles that include behavioral problems, school problems, mental health concerns, involvement in the criminal justice system, and substance abuse/dependence issues. A number of our clients also present with pervasive lifestyle struggles related to neurologic damage that resulted from prenatal alcohol exposure, called fetal alcohol spectrum disorder (FASD). This is a specific diagnostic classification system developed to organize the signs and symptoms of prenatal alcohol exposure.1

Our purpose here is to highlight how an FASD affects client functioning, as well as how it affects families and service providers such as addiction counselors. Service providers in the addiction field must become aware of the indications of the disorder, and consider a screening process to identify and address the needs associated with an FASD regardless of a confirmed diagnosis. If there is a confirmed FASD, it is vital for counselors to understand the implications in order to begin to develop interventions commensurate with the client's unique abilities and deficits.

An FASD diagnosis implies permanent neurologic damage resulting from prenatal alcohol exposure. The features of an FASD may be physical, cognitive, neurobehavioral, or a combination of these, and often result in significant disruptions (e.g., multiple foster care/adoptive placements, academic difficulties, behavioral concerns, early involvement in the criminal justice system, substance abuse management concerns, mental health concerns, emotional dysregulation, and relational disruptions).

The term FASD indicates a spectrum disorder made up of four subcategories including fetal alcohol syndrome (FAS; with or without confirmed prenatal alcohol exposure), partial fetal alcohol syndrome (pFAS; with confirmed prenatal alcohol exposure), alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD). Another related term, fetal alcohol effects (FAE), has been used in the past but is no longer recommended for use.1

Regrettably, individuals with FASD diagnoses often present with such a list of crises and concerns that their positive qualities lay undeveloped. They tend to be labeled quickly as “resistant,” “unmotivated,” or “conscience-less” creatures who inevitably will spiral into addiction, homelessness, or the criminal justice system even if they have a supportive prosocial network. And sadly, many do not have the social and community supports they require.

For periods of time, these individuals might have professional helpers in their lives. Unfortunately, these relationships are often terminated early because of the clients' circumstances, multidimensional needs, lack of funding, age restrictions for services, or service providers' limited understanding of the implications of an FASD. Even those helpers who hang on eventually concede defeat because of the demands of working with those prenatally affected by alcohol and the overwhelming feelings of powerlessness and hopelessness that tend to result.

Case example

As a way to conceptualize the implications of working with someone who has an FASD, we present a case example of a young man we call “Matt.” One of us has the privilege of working directly with Matt, a charming, humorous, energetic, athletic, gregarious, and most of the time delightful individual. People who meet Matt routinely comment on his magnetism. Matt also presents with an array of lifestyle struggles including substance abuse/dependence, mental health concerns, an extensive criminal history, and a diagnosed FASD (in his case, ARND).

We like to use the metaphor of a Ferris wheel when discussing our work with Matt. The Ferris wheel depicts Matt's life, with each chair representing a new issue, crisis, or concern. It is as though we stand at the bottom of the Ferris wheel waiting for each chair to pass by the base. Specific treatment plans started one week are necessarily abandoned the next, owing to a rapid shift of events (incarceration, discharge from inpatient treatment, school change, family crisis, loss of living placement). Each revolving chair seems to bring with it new predicaments requiring compassion, consultation, and creativity. Time— along with Matt— has taught us that we need to accept that we cannot control the bypassing chairs; we can only control our placement on the base, knowing that Matt will come back, always willing to begin again.

Early in our work with Matt we realized that we needed to become realistic and strong supporters, promoters, campaigners, sponsors, and encouragers for him. Not only did this result in a more productive therapeutic relationship, it also mitigated some of the foreseeable challenges. Because of the memory and executive-functioning challenges with which Matt presents, it was important to develop as coherent and consistent a team approach as possible (participants represented education, social services, corrections, mental health, and addiction services, among others).