Fetal Alcohol Spectrum Disorder Part II: Challenges in ...

19 Fetal Alcohol Spectrum Disorder Part II: Challenges in Adulthood Valerie Temple, Leeping Tao, and Trudy Clifford

What you will learn: r r r r

How FASD is diagnosed Intellectual abilities of people with FASD Mental health challenges faced by adults with FASD Treatment and support of adults with FASD

Children with Fetal Alcohol Spectrum Disorder (FASD) eventually grow to become adults with FASD, and adults with FASD often have very different types of challenges compared to children. This chapter will focus on issues in adulthood for individuals with FASD. It will discuss diagnosis, treatment, and the support of adult individuals with this disorder.

Diagnosis of FASD in Adults FASD is a “categorical” term that describes a group of disorders that can occur if an individual is exposed to alcohol before birth. The Canadian Guidelines (Chudley et al., 2005) outline all of the possible

diagnoses in this category, including Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Birth Defects (ARBD), and Alcohol Related Neuro-developmental Disorder (ARND). There are currently four parameters considered when making a diagnosis within the Fetal Alcohol Spectrum. The presence and severity of the four parameters will determine if a diagnosis is given, and which one is given. The parameters are: r FYQPTVSF to alcohol before birth, or how much and how often the mother drank during pregnancy r QIZTJDBM HSPXUI EFêDJUT such as low birth weight

380 Fetal Alcohol Spectrum Disorder, Part II: Challenges in Adulthood

or failure to gain weight and/or height after birth r TQFDJêD GBDJBM GFBUVSFT of FAS including small eyes, a flat mid-face, a poorly developed philtrum (the two lines that run from the nose to the upper lip on the face), and a thin upper lip r DFOUSBM OFSWPVT TZTUFN EBNBHF PS CSBJO EZTGVODtion including directly observable indicators of brain dysfunction such as seizures, microcephaly (small head circumference) or damage seen on brain imaging scans (e.g., CT scans, MRI); brain dysfunction may also be inferred through functional testing such as neurological, psychological, speech-language, and occupational therapy assessment Individuals with exposure to alcohol, significant physical growth deficits, all the facial features, and significant CNS damage meet criteria for full FAS. Individuals with partial symptoms may receive diagnoses of pFAS, ARBD, or ARND. At present, diagnostic criteria for adults and children are the same, but a number of substantial challenges to diagnosing adults have been encountered (Chudley, Kilgour, Cranston, & Edwards, 2007). These include changes in, or the complete disappearance of, specific FAS facial features as an individual grows up; “catch-up growth” or normalization in physical height and weight during adolescence and adulthood; and difficulties with obtaining information about alcohol exposure before birth because it is distant in time and memory for family members or because of estrangement from the family due to foster care or adoption. Spohr, Wilms, and Steinhausen (2007) found in their follow-up study of 37 individuals with FASD 20 years after diagnosis that many of the physical features of FASD documented in childhood had disappeared in the individuals they re-assessed. They noted significant gains in height, weight, and head circumference for the sample as a whole, and reported that most individuals now fell within the average range for these measurements. As well, facial features such as smaller than normal eyes had diminished across the group. This means that an individual who met criteria for full FAS in childhood, with the facial features and growth deficits, might not

meet these criteria in adulthood. The authors noted, however, that brain dysfunction and intellectual deficits remained constant throughout the lifespan. The issue of obtaining information regarding maternal alcohol consumption during pregnancy is difficult for individuals of all ages. However, it is especially problematic in adult diagnosis. For adults, it is at least 18 years since the pregnancy took place and gaining information about alcohol consumption during a particular 9 month period that long ago is challenging at best. Mothers and other family members are often unavailable to report their activities, or even may be deceased. At times, it is possible to obtain medical or other records documenting exposure, but the information is typically limited in terms of details. This makes it very difficult to establish if there has been alcohol exposure and exactly how much exposure has occurred. For individuals with obvious physical and facial features or substantial intellectual deficits early in life, a diagnosis of FAS in childhood is more likely. However, for those with less obvious symptoms, it could be late adolescence or adulthood before a diagnosis is reached. In some cases, FASD may be strongly suspected, but a diagnosis cannot be assigned because the maternal drinking history is not available. As is the case for many disorders, early diagnosis and intervention generally leads to better outcomes. This means that individuals with FASD who are not recognized early in life and provided with appropriate supports may have greater challenges and develop more problems relative to those with an early diagnosis. Nevertheless, adults with suspected FASD may benefit from the same treatment and supports offered to adults with a diagnosis of FASD.

Intellectual and Functional Abilities in Adults with FASD Adults with FASD can have a wide range of abilities and deficits. Some present with a global developmental disability (DD) while others function within the borderline or even average range of intelligence, with more limited areas of disability. Level of alcohol exposure, timing of the exposure, and pre-existing

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genetic factors (e.g., intelligence levels of the parents) can all affect an individual’s outcome in FASD (Kodituwakku, 2007). A person who is exposed to heavy alcohol consumption across the entire pregnancy, for example, may have a very different outcome than someone exposed to drinking in the early stages of pregnancy only. The environment and experiences of an adult with FASD also work to shape his or her profile of intellectual strengths and weaknesses. As is true for everyone, life experiences influence ability and achievement. Both adverse and enriching life events can alter and impact brain development, as the vast literature on brain plasticity has documented (Doidge, 2007). Although environmental factors are also important for children with FASD, the effect is likely magnified in adults due to the greater period of time passed. Because of the variable intellectual presentation of individuals with FASD, a set of deficits specific to FASD has been hard to identify. A common finding in the assessment of adults with FASD, however, is the existence of what is called a “scattered profile.” This means a set of scores on functional testing characterized by large peaks and valleys of ability. This is different from the smaller variability in scores typically seen in other people. Adults with FASD, for example, may have arithmetic skills at the primary school level along with reading skills at the high school level; or age-appropriate (average range) ability to recognize things but severe deficits (DD range) in the ability to recall things (Kodituwakku, 2007). Individuals with a scattered profile of abilities often present a special challenge to their families and care providers. This is because they may appear to be stubborn or oppositional if they do not perform at an age-appropriate level across different situations. For example, an individual with FASD may have average long-term memory skills but severe deficits in short-term memory. This would mean the person could recall what happened many weeks ago, but not the day before. It might therefore appear to care providers, who do not know about the deficit, that the individual chooses not to give complete or correct information about events the day before or that they are being evasive, when in fact they are simply

unable to give it. This is just one possible example, but the general situation of mistaking inability for unwillingness is a common problem for this group. Executive functioning and daily living skills

Despite the varying levels of ability and scattered profiles commonly seen in adults with FASD, there are at least two areas where deficits almost always exist. These are executive functioning and daily living skills (Chudley et al., 2007; Rasmussen, McAuley, & Andrew, 2007; Streissguth et al., 2004). Executive functioning is a group of abilities that involves managing, controlling, and organizing one’s own actions and behaviour. Executive functioning skills include planning and organizing; modulating emotional reactions; initiating activities; attention and focus; and impulse control. Considering all these skills together, it is easy to see how an individual with deficits in these areas would have difficulties functioning as an adult. Because the activities of children are often controlled and managed by their parents or caregivers, executive functioning deficits may be less obvious or more easily managed in a child. An adult, however, is expected to self-direct most or all aspects of his or her own life, and individuals with executive functioning deficits are less able to do this. Research in this area has suggested that deficits in executive functioning become more pronounced as an individual with FASD ages (Rasmussen et al., 2007). Studies of adults with FASD have shown that problems with anger management, impulse control, and social interaction are very common. This can lead to problems with the legal system, difficulties holding a job, and loss of residential placement (Streissguth et al., 1994; Tao, Temple, Clifford, & Shewfelt, 2010). Diagnoses such as Oppositional Defiant Disorder, Conduct Disorder, and AntiSocial Personality Disorder are also common in adults with FASD and are likely related to these difficulties with executive functioning skills. Another important area of deficit for adults with FASD is daily living skills (Streissguth et al., 2010). Daily living skills refers to the ability to perform everyday tasks. It includes activities such as personal hygiene, domestic chores, using public transit, shopping for groceries, and using banking services.


Box 1: Case Study At 20 years of age, Melissa was referred for FASD assessment by the Children’s Aid Society (CAS). The CAS could only support Melissa up until 21 years of age and they were requesting services within the adult developmental sector to assist for the future. Melissa was born full term and weighed 5lbs 2oz. Her mother drank heavily throughout the pregnancy and also smoked cigarettes. Melissa was a small, frail child who had difficulty gaining weight. At 6 years of age, the CAS became involved with her family due to allegations by school personnel that she was being neglected and physically abused at home. By 8 years of age, Melissa was removed from her mother’s home and put into a series of foster home placements. Each placement began well but would break down after a short period and Melissa would attempt to run away and go back to her mother. By 15 years of age, Melissa was made a Crown Ward and had been diagnosed with Attention Deficit-Hyperactive Disorder, Depression, Oppositional Defiant Disorder, and Attachment Disorder. Teachers and caregivers believed Melissa was an intelligent but stubborn child who could do better if she would only try harder. At 16 years of age, Melissa was hospitalized for substance abuse problems and a suicide attempt. She became pregnant at 18 years of age but the child was apprehended by the CAS shortly after birth. Also around the same time, her mother died from complications related to liver disease and Melissa became profoundly depressed by these two serious losses in her life. An FASD assessment found that Melissa met criteria for ARND. Her psychological testing found a scattered profile of skills with some abilities in the Mild range of DD, some in the Borderline range and some in the Low Average range. Following the assessment, Melissa received counselling services to address her bereavement issues, a supported housing placement, and financial assistance from the Ontario Disability Support Program. Her support workers learned that many of the problems they had previously attributed to stubbornness and oppositional behaviour were actually due to her disability. This led them to view her in a different light and provide more support, which in turn led to less problem behaviour.

Adults with FASD frequently have very low skills in this area regardless of their level of intellectual ability. Temple et al. (in press) compared overall daily living skills scores for a group of individuals with FASD to a group without FASD matched on IQ scores. They found that the FASD group had lower daily living skills scores than the non-FASD group with the same IQs. This means that the FASD group had more problems “applying” their intelligence on a daily basis than other people with DD. It is possible this is because of their greater problems with planning and organizing, which in turn influences the ability to follow through on many types of activities.

Mental Health Problems Associated with FASD Adults with FASD are at very high risk for mental health problems. In the developmental literature, individuals with DD and a mental health problem are referred to as having a dual diagnosis. While indi-

viduals with DD as a general group have a high rate of dual diagnosis, in the range of 14%-67% (Bradley & Summers, 2003), adults with FASD have been reported to have rates in the range of 85% to 90% (Streissguth et al., 1994; Tao et al., 2010). Some common mental health challenges for adults with FASD include mood disorders such as depression, attention deficit disorders (e.g., ADHD), anxiety disorders, and personality disorders (Barr et al., 2006; Tao et al., 2010). Adults with FASD are also at high risk for problems such as abusing substances and suicide attempts (Streissguth et al., 2004; Tao et al., 2010). Environmental stressors and adverse life events are also very common for adults with FASD, and arguably these are important in the development of later mental health problems. Streissguth (2008) reported, from her longitudinal study, that 67% of their sample of individuals with FASD had been the victims of sexual/physical abuse or domestic violence. As well, 80% were not raised by their biological parents, suggesting a high level of disrupted family experi-


ences. As adolescents or adults, 46% had drug or alcohol problems of their own, and by adulthood 35% had spent time in jail (Streissguth et al., 2004). Interestingly, in the longitudinal study by Spohr et al. (2007), which was conducted in Germany, there were far fewer negative environmental events in childhood and adolescences reported. This suggests that cultural factors, such as access to healthcare and the availability of community supports, may be important to positive or negative outcomes for this group.

Interventions and Supports Adults with FASD can benefit from a variety of interventions and supports. One critical area is assistance around organizing and structuring activities. Given their very poor daily living skills and executive functioning deficits, adults with FASD are generally in need of someone to organize and direct activities in their lives. For example, they may require someone to accompany them to appointments in the community, set schedules, plan events, or assist with managing their money. This may be done by a family member, a paid support worker such as an Adult Protective Services Worker, or group-home staff. In the FASD literature, this role is sometimes referred to as being the “external brain” for the person with FASD. Another important support issue is case management. At present, there are very few community resources specifically for adults with FASD. Generic supports for individuals in the DD sector may not always be suitable for this group due to their high levels of mental health problems and unique challenges such as substance abuse. As well, many DD sector services require a diagnosis of global intellectual disability (e.g., IQ below 70) but, given the broad range of scatter common in the intellectual scores of adults with FASD, they may not qualify for DD services. Case managers can help by advocating for and finding structured and adapted work environments, residential supports, and appropriate leisure activities for adults with FASD. Counselling services can also be helpful for this group. As adults with FASD have frequently expe-

rienced abuse, neglect and/or trauma, counselling aimed at reducing symptoms of stress, increasing self-esteem, and teaching self-regulation strategies can be very useful. Counselling techniques aimed at reducing impulsivity and behavioural problems, however, are generally less effective. Because of difficulties with managing time and organizing, it is important to make accommodations in providing counselling services to people with FASD. Ideally, appointments should be set at the same time every week or bi-weekly. Also, it may be helpful, with the permission of the individual, to involve caregivers in counselling sessions in order to gain information about problems occurring in the individual’s life that they may have difficulty articulating as well as to help them to arrive at appointments on schedule. Another intervention that has proven effective with this group is behaviour therapy. Although traditional “learning theory,” which may focus on the consequences of an individual’s actions, is less helpful for adults with FASD (Malbin, 2005), interventions aimed at modifying the environment to provide greater support and structure have been found useful. Role modelling, using visual cues, and using scheduling aids to improve organization, are some examples of effective supports. Although adults with FASD have very high rates of mental health issues, at present there is very little information available regarding how well medications can help manage various mental health symptoms (Doig, McLennan, & Gibbard, 2008). Because of their unique etiology, the presentation of mental health problems in adults with FASD may be different from other individuals. At least one study, however, has reported that pharmacological interventions can provide additional support for symptom management in the very common condition of ADHD.

Summary Adults with FASD present with a complex array of challenges. As a group, they often come from difficult family environments, and many are adopted or placed in foster care. A large number have been physically or sexually assaulted at some time in their


lives, and as adults they have a very high rate of dual diagnosis, substance use, and mental health problems. Diagnosis of FASD in adulthood has many challenges, including the fact that they may “grow out” of some of the key indicators of FASD such as facial features and weight/height deficits. Functional assessment often finds these individuals have a scattered profile of intellectual abilities along with substantial deficits in executive functioning and daily living skills. These and other deficits lead to the need for a high level of support around personal care, gaining employment, managing money, and living in the community. Case management, counselling, and behaviour therapy services are some of the important interventions that can be helpful for adults with FASD. Although pharmacological interventions may help for some co-existing conditions (e.g., ADHD), research about the use of medications for adults with FASD is very limited at this time.

For Further Thought and Discussion 1. What additional challenges do you think you might encounter when treating adults with FASD as compared to children? 2. When individuals require a high degree of support and structure in their lives, ethical issues can arise for care providers (e.g., family members, professionals, and case workers). What do you think could be some of the ethical issues encountered when “managing” someone else’s life? Discuss with reference to the concept of “Dignity of Risk.”

More Resources Websites: Canadian Centre on Substance Abuse

Research and information on substance abuse issues and FASD. www.ccsa.ca FASD and the Justice System

Information on FASD decisions in the Canadian courts, educational materials for legal personnel, research articles on legal issues in FASD.

http://fasdjustice.on.ca FASD Center for Excellence, Health and Human Services (U.S.A. Government)

Education material for FASD; “grab and go” fact sheets; Powerpoint training programs. www.fasdcenter.samhsa.gov FASD-ONE (Fetal Alcohol Spectrum DisordersOntario Network of Expertise)

Offers a list of diagnostic clinics across the province as well as links to agencies and resources about FASD. www.fasdontario.ca Public Health Agency of Canada, Canadian FASD Initiatives

Information on Canadian research, statistics, policy, across the country. www.phac-aspc.gc.ca/fasd-etcaf/index-eng.php Books:

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