Clients with Unique Treatment Needs: Foetal Alcohol Spectrum Disorders

by Cynthia Silva

As a therapist working with children, families or adolescents, have you ever been frustrated by certain individuals who just don’t seem to respond to the traditional approaches you have used successfully with other clients?  Have you worked with children or adults who seem to have difficulty learning from experience?  Have you worked with individuals who despite appearing to have average intellectual ability, appear to have difficulties acting their age? Have you ever looked at a client and thought to yourself that something was odd about the client’s facial features, something you just couldn’t put your finger on? Have you ever considered that you may be working with someone with a FASD?

April is Alcohol Awareness Month, the American Academy of Child and Adolescent Psychiatry (AACAP)  has  stated that pregnant women should not drink any alcohol at any point during their pregnancy. Alcohol consumption during pregnancy is a major cause of intellectual disability and birth defects. (National Organization on Fetal Alcohol Syndrome’s (NOFAS), Web site , http://www.nofas.org/ Fetal alcohol effects are present in more than one in 100 live births or as many as 40,000 infants each year in America.  In addition to developmental delays, children born with fetal alcohol effects have a higher incidence of behavioral problems, including conduct disorder, depression, and attentional disorders.

Fetal Alcohol Spectrum Disorders are under-recognized and under-reported even in countries where there is much knowledge of the conditions. FASD include Fetal Alcohol Syndrome, (with or without confirmed maternal consumption of alcohol), Partial Fetal Alcohol Syndrome, Alcohol-Related Neurodevelopmental Disorder and Alcohol-Related Birth Defects. The term FASD is not intended for use as a clinical diagnosis.

Ireland as a nation lags behind the U.S. and Canada in addressing issues around diagnosis, epidemiology, prevention, management of conditions, and provision of services for the full spectrum of disorders. Fetal Alcohol Syndrome, the rarest, albeit the most visible of the conditions, is being officially recognized in this country, but there is an urgent need for greater general awareness of the scope of the whole spectrum of disorders.

As therapist working in Ireland the adverse affects of Alcohol will have touched many individuals that may come to your attention. The problems related to alcohol are not limited to adults or rowdy teenagers who choose to drink too much on weekends, or individuals who may present knowing they have an alcohol problem and are seeking help. Unfortunately the effects of a night of good craic, a wedding, or just a few nights out having a nice meal and a bottle of wine or two, can have a life time affect on the developing foetus. The problem for many individuals involved in risky behaviour can be traced to a very early encounter with alcohol. For all too many individuals their first bottle was in utero while their mother had a drink or two, three or more; so did they!  Unfortunately they didn’t  even  have to ask to be served  for this first drink, as equally unfortunate for them alcohol crosses the placenta freely.

In Ireland 7.8 times more Irish pregnant women drink alcohol than do their American counterparts, (Barry, Dr. S., et al, 2006). Given that FASD occur annually in 1% of all U.S. births, Ireland has serious cause for concern, as there is good reason to believe that up to 1,800 babies born here each year are at risk of being affected, to a greater or lesser degree, by these avoidable lifelong effects.

By the time individuals with FASD reach adolescence or adulthood, many of the physical characteristics (e.g., facial features and growth deficiencies) may no longer be apparent. Consequently, it is the history of prenatal alcohol exposure and the behavioral manifestations of central nervous system dysfunction that provide the clinician with the primary clues to the suspected diagnosis. Diagnosis is not a means to attribute blame but rather helps to provide appropriate treatment. If an individual is fortunate enough to be working with a therapist who can recognize the etiology of the problem behaviors and provide the appropriate support, there is a better possibility for a positive outcome. There is very little general awareness in Ireland about the risks of alcohol and half of all pregnancies in Ireland are not planned.

As a therapist working with individuals who may not be responding to your typical interventions it may be important to explore as much as possible what your client may know or not know about whether their mother drank at all during their pregnancy. What may have often been thought to be social or typical drinking habits we now know to be actually binge drinking; any time more than 3-4 units of alcohol are consumed in a single session there is risk for permanent damage to the fetus as there is no safe amount of alcohol that can be consumed during a pregnancy.

Adolescents and adults with FASD present with a range of symptoms.  Most individuals display a high level of impulsivity which becomes restlessness and a tendency to “split” when situations become too frustrating. There is a marked discrepancy between seemingly high verbal skills and inability to communicate effectively. Individuals often have a long history of situations where they appear to have displayed poor judgment.   Memory problems are common, both long-term and short-term memory. Trouble with applying knowledge and higher thinking is common. A severe difficulty understanding why something happened (cause and effect) is also common. This is even more pronounced in adolescents –  they have trouble with time and money management and with many applications involving maths. We also meet with lack of common sense, mental illness, substance abuse, trouble with the law, school failure, and homelessness. Individuals with FASD are unresponsive to social cues. They often are lacking reciprocal friendships; have difficulty distinguishing between fact and fantasy; and have difficulty with sexual expression and anti-social behavior, and  these conditions are typically first noticed during adolescence.

If working with FASD individuals through Gestalt psychotherapy, the therapist would find that these individuals would demonstrate difficulty with awareness, contact and self regulation. Their lack of awareness influences their perception of their self, others and the environment. Individuals with FASD have a different perception of the environment as a direct result of the effect of alcohol on the brain – how it processes sensory information.  A dramatic example of the affect of alcohol on the brain of the developing foetus is to pour two or three measures of vodka into a short clear glass. Then take a raw egg and break it into the vodka; within a few moments the white of the egg will begin to turn milky. This happens to an egg when it is beginning to be cooked. This is what happens to the cells of the frontal cortex of the foetus which is where the executive cognitive functions take place.

Individuals with FASD tend to be egocentric and don’t understand how their activities relate to others’ feelings. Thus traditional group or milieu therapy may be disorienting and upsetting to patients with FASD due to their difficulty with boundaries, emotional control and suggestibility. They often respond more successfully to a mentoring, one-on-one type of treatment where they feel a special bond with a staff member who serves as their advocate and point of contact. While insight-oriented treatment is often lost on patients with FASD, individual therapy can be specifically designed to address treatment issues in a more structured way. Cognitive-behavioral approaches work well, because they can be specifically tailored to accommodate the judgment and organizational problems of the patient identified as having FASD. Instead of relying on an individual’s ability to generalize what he or she learns in treatment and to modify behavior accordingly, a more effective approach involves the use of consistent rules of behavior that guide and structure behavior in any situation.

Individuals impaired by prenatal alcohol exposure often exhibit rapid mood swings and quick tempers. When these characteristics combine with a generally impulsive nature and a history of repeated frustration, behavior control is difficult. Individual therapy is best suited to deal with the issue of emotion control. Role-playing is an effective technique. In this approach, the therapist develops a number of different scenarios, each designed to trigger anger or frustration, and works out a way for the patient to respond appropriately in each case. The key to successful generalization of these role-playing techniques to real-life situations after treatment is the amount of practice and the variety of scenarios the patient is exposed to while in treatment.

Another important intervention is family therapy. The ability of a patient to sustain progress made in treatment depends heavily on the amount of support available in the home environment. Consequently, involving the family in treatment at the outset is critical to ensure adequate understanding and support for continued behavior change

Clients with fetal alcohol impairment often need intensive case management if they do not have a supportive family member who can fill this role. It can be a complex task to coordinate the many services that the client may need, such as ongoing individual (outpatient) therapy, vocational support/job coaching, housing, transportation and financial assistance.

Multimodal Treatment must recognize that for families of individuals with FASD it is important to educate the family and schools or partners.  The family have to understand it is a real condition, morn the loss of expectations, of ideal family, especially for adoptive parents, and in other cases also bare the guilt for the loss.  Earlier diagnosis is important. Non-verbal therapy helps to reduce difficulties with processing language  and those who have also experienced abuse. Non-verbal therapy helps to reduce misunderstanding. It is important to have an Occupational  sensory integration assessment, and Speech and Language Therapy to help focus on social use of language skills in different settings; often the use of language at home is very different than language and cues given in schools, work places or social situations. The use of medication such as Serotonin agents can be a problem when given to FASD individuals as it can increase suicidal tendencies. Paxol is the worst agent for young FASD male adults as it also increases manic attacks.   If group therapy is employed it is important that groups be formed based on age and gender. Typical therapeutic interventions should last for 3 months, 1x per week.

A Strength based approach to achieving positive outcomes with individuals with FASD focuses on Identifying strengths and desires in the individual. What do they do well? What do they like to do? What are their best qualities? What are your funniest experiences with them? Identify strengths in the family or other providers. Identify strengths in the community. Strategies for Improving Outcomes for individuals with an FASD include simplifying the individual’s environment as much as possible. Encourage and simplify routines. Be consistent in activities and provide one direction or rule at a time. Review rules regularly and use a lot of repetition. Always check understanding and use short-term consequences. Do not use natural consequences. Additional strategies in treatment are to be consistent in appointment days and times. If possible offer short, more frequent meetings or sessions. It may be necessary to arrange for someone to get the person to appointments. Try to establish achievable short term goals and identify someone who will help with each step. It is important to avoid using students as therapists as they may not be skilled in FASD and their short term placements may recapitulate loses for the individual when they move on.

Notions to keep in mind are that both prevention and treatment are key in addressing FASD. Successful treatment is one step to effective prevention. When an intervention does not work, it is essential to examine for whom it doesn’t work and why it doesn’t work for that person at that time. Collaboration among agencies and systems is essential.  It is essential in these times of shortages in health care funds that service providers acknowledge turf issues and pool resources. FASD is a human issue. FASD is about people. FASD affects the lives of individuals, families, and communities.

We must move from viewing the individual as failing if s/he does not do well with a program to viewing the program as not providing what the individual needs in order to succeed” (Dubovsky, 2000).  This paradigm shift is a very important one. Most of the time, we provide a program that works with many people, either by experience or by research. If the person does well in the program, we say that the program is a successful program. If the person does not do well (by the program’s standards), we say that the person has failed or that the person is unmotivated. We need to change our thinking. We need to see that it is our responsibility, as service providers and caregivers, to identify methods to ensure that the person succeeds (in our individually developed definition of success for the person).

Suggested Screening questionnaires for diagnosing problem drinking

TWEAK (score of 3 or more indicates heavy or problem drinker)

T (tolerance) How many drinks* does it take before you begin to feel the first effects of alcohol? (3 or more drinks =2 points)

W (worried) Have close friends or relatives worried or complained about your drinking in the past year?

(Yes = 2 points)

E (eye-opener) Do you sometimes take a drink in the morning when you first get up? (Yes = 1 point)

A (amnesia) Has a friend or family member ever told you about things you said or did while you were drinking that you could not remember? (Yes = 1 point)

K (kut down) Do you sometimes feel the need to cut down on your drinking? (Yes = 1 point)

T-ACE (score of 2 or more indicates heavy or problem drinker)

T (tolerance) How many drinks does it take to make you feel high? (3 or more drinks = 2 points)

A (annoyed) Have people annoyed you by criticizing your drinking? (Yes = 1 point)

C (cut down) Have you ever felt you ought to cut down on your drinking? (Yes = 1 point)

E (eye-opener) Have you ever had a drink in the morning to steady your nerves or to get rid of a hangover?

(Yes = 1 point)

Note: TWEAK has a sensitivity of 79% and a specificity of 83%; T-ACE has a sensitivity of 70% and a specificity of 85%.5

*A standard drink is commonly defined as one containing 15 g of alcohol (e.g., 360 mL [12 oz.] of beer, 150 mL [5 oz.] of wine or 45 mL [1.5 oz.] of spirits).

Screening questionnaire for diagnosing problem drinking in adolescent women: CRAFFT*

C Have you ever ridden in a CAR driven by someone (including yourself) who was high or had been using alcohol or drugs?

R Do you ever use alcohol or drugs to RELAX, feel better about yourself, or fit in?

A Do you ever use alcohol or drugs while you are by yourself, ALONE?

F Do you ever FORGET things you did while using alcohol or drugs?

F Does your family or FRIENDS ever tell you that you should cut down on your drinking or drug use?

T Have you ever gotten into TROUBLE while you were using alcohol or drugs?

*Each question on the CRAFFT list is given a score of 1. A cut point of 2 provides moderate sensitivity (70%) and excellent specificity (94%) for identifying alcohol use disorders in adolescents. Any positive answer on the CRAFFT list requires further assessment.

Cynthia Silva is a senior psychologist in private practice in Co. Mayo.

References

Astley SJ. (2004)    Diagnostic guide for fetal alcohol spectrum disorders: The 4-Digit Diagnostic Code (3rd edition). Seattle: University of Washington Publication Services;. Available:

Roberts, G. Nanson, J. Best Practices Fetal Alcohol Syndrome/Fetal Alcohol Effects.

(2000)  Effects of Other Substance Use During Pregnancy;

Canada’s Drug Strategy Division, Health Canada. www.fasireland.org

Stanley, B. JAMC. (MARS 2005) 1er  172 (5) Identifying fetal alcohol spectrum disorder in primary care

National Organization on Fetal Alcohol Syndrome’s (NOFAS), Web site, http://www.nofas.org/.

O’Malley, K.D. (2000). Update on the role of medication in treating patients with FASD. Iceberg 10(3), 4-5.

O’Malley, K.D. (1999). Multi-Modal Treatment of Children/Adolescents with FAS/FAE [or Alcohol Related Neurodevelopmental Disorder (ARND)]. Seattle, WA: University of Washington School of Medicine.

Streissguth, A.P., Aase J.M., Clarren, S.K., Randels, S.P., LaDue, R.A., Smith, D.F. (1991). Fetal alcohol syndrome in adolescents and adults. Journal of the American Medical Association (JAMA), 265(15), 1961-67.

Working With Individuals Who Are “Difficult to Treat”: Who Are They?  What Can We Do to Improve Outcomes; Missouri Department of Mental Health

2006 Spring Training Institute

May 17-19, 2006.