The Ferris Wheel Understanding FASD

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).

Matt quickly caught on to the team idea and would cheerfully refer to our work together from this perspective. Sadly, building an understanding team is not the norm when working with individuals who have an FASD, substance abuse/dependence issues, and other significant lifestyle problems. We were labeled “enmeshed” and were de-nounced by some who believed we were doing Matt harm by tenaciously advocating for him. Matt was often blamed in public and private forums for the manifestations of his disability. Professionals would cite motivational issues as the key ingredients for failure, when in reality the root cause was neurobehavioral. Fortunately, Matt is a gracious soul and tolerated most of the professional bumbling while keeping his sense of humor intact. We would act as “interpreters” for him, attempting to help him understand the many messages bombarding him, some of which had strong emotional undertones (usually frustration) that were difficult for him to make sense of.

We learned from Matt that treatment must be holistic, interpersonal, and individualized. A single clinical modality did not “work” for Matt. We learned that as much as Matt needed our clinical expertise (many days we felt like we had none), he also needed our advocacy in many areas of his life. We were told that Matt was “manipulating” us, and that he “did not want to change.” Despite these opinions, we learned that Matt did feel remorse when things broke down. However, he often did not have the language to express his feelings, and he became despondent or reacted by abusing substances or engaging in criminal behavior. When we responded with compassion and simple directions rather than blaming, his behaviors became less volatile.

Matt has struggled to develop the skills needed to make changes in his life— skills that cognitively intact individuals would struggle with if they too had experienced childhood trauma, were involved in the criminal justice system, and had substance dependence issues. Developing and applying skills with Matt has been a long, tedious process, but small changes have occurred. We have learned that our expectations need to be modified. Incremental changes became the goal, not the large, sweeping changes that sometimes occur with people who are more cognitively capable.

Clinical principles

The more we have contemplated youths and young adults who have an FASD and substance abuse/dependence issues, the more we have begun to challenge our clinical frame. We have begun to consider some principles that we think may assist others who share a similar practice. We present the principles as burgeoning ideas rather than a well-rounded model. Our intent is to open the discussion about FASD and substance management issues; we believe that our budding principles will continue to grow with time, experience, and more research.

The first principle is that the subcategories that make up FASD are largely invisible disabilities. In early childhood there may be some physical signs or symptoms that are used for medical diagnosis (e.g., shape of eyes and lips, size of cranium, etc.). There may be neurocognitive symptoms in areas such as comprehension, executive functioning, and memory. But it is the disorder's behavioral manifestations (e.g., forgetting appointments, running away, engaging in criminal behaviors) that irritate service providers and create predicaments for the individual.

A person with an FASD is often blamed for not meeting providers' expectations, even though these expectations are rooted in interventions for the cognitively capable. Just like we would not blame a person who uses a wheelchair for not walking, we need to guard against blaming those with an FASD for invisible deficits they were born with.

The second principle is that we need to work with people from an individual perspective. Some may retort that this is simply good clinical practice. But we have observed that even those who tout this regularly revert to using the same old interventions and blame clients when they do not follow through on their “very sound clinical expertise.” We also understand that some service providers hide behind this comment because of the frustrating challenges in working with this population. However, we must not become despondent. We must humbly allow individual assessments and the research to guide our practice and push us to use creative approaches. If there is a strong therapeutic alliance, our clients will tell us if our work is making a difference. We need to be understanding— although not constrained by resignation— that accomplishments will take time and may be painstaking.

The third principle is derived from our personal experiences of working with people with an FASD. Very simply, this principle is called hope. Despite all of the challenges, individuals with FASD diagnoses are genuinely remarkable human beings; our job is truly one of mountaintop and valley experiences. Alas, the valleys seem more frequent, and when the tumbling over the cliff commences, it is usually rapid and painful for all involved. Nevertheless, we have learned that the young people we work with have much to teach us, and we would be wise to listen. Amid the dilemmas, we have discovered that there is hope for these individuals, and in hope we are inspired to do better for their sake, for the sake of our communities, and for our own.

The fourth principle is difficult to expound on because of its complexity; nevertheless, we call it the functional processes principle. It builds upon the first three principles and is based on a long-term process that takes into account each individual's specific needs. Assessing each individual's functional capacity helps develop interventions that can support clients to make the most of their lives. Whenever possible, interventions and treatment plans for FASD-affected individuals must be simple, concrete, and routine. Incremental steps toward goals should be objectives in and of themselves, and acknowledged when accomplished. Balancing reality with hope is essential, and coaching the provider team about the effort of balance is essential as well.

A necessary comment is in order when discussing the functional processes principle. Some believe that because individuals with an FASD diagnosis function better with structure and supervision, they need to reside in controlled environments such as custody. We do not believe that incarceration in isolation benefits FASD-affected individuals, primarily because they are exposed to others who have antisocial attitudes and behaviors and their needs remain unmet. We believe that specialized interventions need to be put in place to help individuals manage their lives despite their limitations, both in institutions and in the community.

We call our fifth principle system changes. Individuals with FASD diagnoses tend to struggle within our health, addiction, justice, and social service systems. System “language” alone is often confusing. System policies and procedures are typically inflexible, and individuals who do not follow the mandates precisely are deemed resistant and lose services. We have sat in on meetings where policies have been used to blame and shame the client. We have noticed that it is easier to accuse the client of being unmotivated than to address those policies and procedures that impede helpful practice for people with FASD and substance-related concerns. System structures need to consider the four principles mentioned above when developing policies and procedures that will maximize benefits and minimize harm for FASD-affected individuals.

Conclusion

We have proposed the five principles as a starting place for conceptualizing a framework to help guide service providers working with clients who have substance abuse/dependence and potential FASD issues. When a client presents with significant lifestyle struggles but does not have an FASD diagnosis, it is important to screen for this possibility, lest it be overlooked and the client continues to spiral downward without supports.

When working with individuals who have FASD diagnoses and substance management issues, we must acknowledge that an invisible disability exists and we must address it specifically from an individual perspective. A diagnosis only confirms a reality; it does not prescribe a cure. A diagnosis begins to unfold the areas of concern, but it will not provide a foolproof treatment plan.

Assessing the client from a functional standpoint (e.g., strengths and weaknesses) is critical so that strengths can be capitalized upon. In concert with our clients and the team, we must foster a holistic lifestyle treatment plan while keeping in mind that there will be snags along the way. We necessarily build strong therapeutic alliances and use a flexible structure. It is essential to remember that blaming the client for his/her disability and substance abuse/ dependence is destructive and does not build on the evident resiliencies.

Finally, we need to speak to policy makers about how best to intervene with those who have FASD and substance abuse/dependence, so that these individuals are supported across the life span with appropriate interventions.

To close, we want to acknowledge the many researchers and experts who have passionately and compassionately promoted sound and creative practice with people who have FASD. It is their work upon which we are building. And to Matt, a young man imbued with many talents and gifts, thanks for letting us learn with you. We continue to have hope for your success.

Editor's note: See page 49 for a related resource on FASD.

Reference

1. Chudley AE, Conry J, Cook JL, et al. Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. CMAJ 2005; 172:S1-S21.