© Springer International Publishing Switzerland 2016Monty Nelson and Marguerite Trussler (eds.)Fetal Alcohol Spectrum Disorders in Adults: Ethical and Legal PerspectivesInternational Library of Ethics, Law, and the New Medicine6310.1007/978-3-319-20866-4_16
Minimizing Secondary Disabilities
Primary and Secondary Disabilities Stemming from FASD
While most people understand what a brain injury involves when it occurs after birth, prenatal brain injury is a different matter. There is no before-and-after behavior to compare, and many find it difficult to understand the severe impairments that may occur as a result of FASD. At birth, the symptoms may be vague and diffuse. They may even go unnoticed or be confused with the temporary after-effects of a difficult delivery or the mother’s medication prior to the delivery. When the child begins to display more obvious atypical behaviors, the explanation is often not sought in prenatal factors but in postnatal trauma.
Alcohol exposure during pregnancy may disturb normal cell division and the migration of brain cells. This may cause structural anomalies in brain development. Another possible consequence of fetal alcohol exposure is a disturbance of the brain’s electrophysiological and neurochemical balance. As a consequence, messages are not conveyed as efficiently and as accurately as they should be and normally are. In some children with fetal alcohol effects, impaired connectivity in the brain causes brain receptors to receive erroneous messages.
It is, however, difficult to measure the structural and functional brain processes in large numbers of individuals with FASD. Instead, researchers and practitioners have relied on psychological testing to measure primary disabilities. This includes IQ tests, performance tests, adaptive behavior tests and behavioral observations as well as interviews with caretakers.
Studies of Primary and Secondary Disabilities
The Fetal Alcohol and Drug Unit at the University of Washington in Seattle has published three longitudinal studies of children with Fetal Alcohol Syndrome. Although these studies focus on primary disabilities, they also provided a glimpse of what was later termed secondary disabilities.
The first study—a ten-year follow-up study (Streissguth et al. 1985)—involved a group of eight children, who were among the first eleven children ever to be diagnosed with what was then termed fetal alcohol syndrome (FAS). Of the remaining three, two had passed away before the study, and one was unavailable for follow-up. The study found that the four persons who had an IQ below 70 were in better and more appropriate educational programs and led more stable lives than the four who had a higher IQ.
The four individuals who had an IQ above 70 were not officially categorized as having an intellectual disability, and they were not seen as having immediate problems or being at risk of developing future problems. However, they all had FAS.
One of the boys dropped out of school for an extended period; he resumed his education when he relocated to another state. One girl dropped out in mid-term and had a baby soon after. Another girl left after 9th grade and became a single mother. Only one of the four stayed in school.
These observations inspired a second study (Streissguth et al. 1991) focusing on adults and adolescents over 12 years of age, the age when children with FASD typically encounter problems, both at home and in school. The subjects were 61 adolescents and adults aged 12–40 years, all with FAS or fetal alcohol effects (FAE). Despite a mean chronological age around 17 years, the mean developmental age (Vineland Adaptive Behavior Scale) was 7 years. Academically, the group performed as expected: although some had reading and spelling skills at a 5th-grade level or slightly higher, the average level was 2nd–4th grade. The group’s arithmetic skills lagged even further behind.
The 61 adolescents and adults were tested on three domains:
Daily living skills, which includes personal hygiene, cooking, cleaning, keeping doctor’s and dentist’s appointments, managing one’s personal budget, personal safety.
Socialization, which includes appropriate interactions with others, friendships, visitors, contact with family, verbal communication skills.
Communication skills, which includes shopping, going to the post office, the library and the bank, dealing with public transport, securing positive contacts/neighborly relations.
The group performed best on daily living skills (mean at the nine-year level) and most poorly on socialization skills (mean around the six-year level). A few had age-appropriate daily living skills; none had age-appropriate socialization or communication skills.
As a group, the subset who did not have an intellectual disability, according to their IQ score, still had problems with considering the consequences of their actions, displaying appropriate initiative, responding appropriately to subtle social cues and establishing and maintaining reciprocal friendships.
Study Findings and the Development of Secondary Disabilities
Ann Streissguth has carried out numerous studies, and during the 1990s her findings caused her to take a growing interest in secondary disabilities.
She identified the following key challenges typically faced by persons with FASD:
Poor judgment, which puts them at increased risk of victimization
Attention difficulties, which causes them to lose focus often and be distracted
Math problems, which makes it hard for them to handle money
Memory problems, which makes it hard for them to learn from their experiences
Difficulties with abstract thinking, which makes it hard for them to consider consequences of their actions
Problems with orientation in time and space, which makes social interactions challenging
Problems with control/impulsive behavior, which leads to a low frustration threshold
These seven points describe the link between some of the cognitive impairments in persons with FASD and the resulting everyday challenges.
When these problem behaviors are exhibited by a person who clearly appears to have an intellectual disability, they hardly surprise us. In fact, we might feel sympathy and wish to offer some sort or care or support. However, these behaviors are much harder to accept from a person who otherwise speaks and acts normally, and who does not have appear to have an intellectual disability, either to a casual observer or in a formal IQ assessment. Some of the spontaneous reactions might be, “He’s no Einstein!”—“Where does he get off?!”—“What horrible manners,” or “Is this your idea of a joke?!”
Faced with a discrepancy between how people behave versus how we expect them to behave, we are left to draw our own conclusions. This is an example of the fundamental attribution error or correspondence bias, a term known from social psychology. If the person had recently been in a motor accident, we would probably associate the unexpected behavior with brain injury. But in the absence of a visible explanation, the average person is not likely to consider the presence of a brain injury. Knowledge of the diagnosis or about the manifestations of prenatal alcohol exposure, however, will probably enable the observer to arrive at a correct hypothesis.
It is this discrepancy between the behavior we expect of children, youths and adults with fetal alcohol effects and the behavior we see from them that shapes the climate for secondary disabilities. Other secondary disabilities may stem more directly from the children’s experiences growing up and from their inability to look out for themselves. Ann Streissguth argues that some of the secondary effects could be mitigated if we had a better understanding of the primary effects.
In 1996, Ann Streissguth and her colleagues published a large-scale study of secondary disabilities (Streissguth et al. 1996). The study included 415 persons with FASD aged 6–51 years.
The study examined six secondary disabilities:
Mental health problems, defined as having received treatment for one or several disorders, for example attention deficit disorder/hyperactivity (ADHD), depression or contemplating or attempting suicide, panic reactions, psychoses (hallucinations), aggressive or obstinate behavior, sexual depravity etc.
Disrupted school experience, defined as being suspended or expelled or dropping out.
Trouble with the law, defined as involvement with the police or being charged or convicted of crime.
Confinement, defined as incarceration in the justice system or inpatient treatment for mental health problems or substance abuse.
Inappropriate sexual behavior, defined as repeated problematic sexual behaviors, for example sexual advances, sexual touching, promiscuity, exposure, compulsions, voyeurism, masturbation in public or incest, including convictions for sexual offences.
Alcohol and drug problems, defined as abuse of alcohol or drugs and inpatient treatment for substance abuse.
Mental health problems: More than 90 % of the children, adolescents and adults who took part in the study had mental health problems, and more than 80 % had received treatment. Among the children and adolescents, attention deficit disorder was the dominant issue, while depression was the most prevalent issue among the adults (more than 50 %).
Disrupted school experience: More than 60 % of the adolescents and adults had a disrupted school experience. Surprisingly, the same was true for 14 % of the children. Suspension was the most frequent occurrence across the age groups, but among adults, dropping out was a close second (almost 40 %). Individuals with a disrupted school experience were twice as likely to encounter learning and behavioral problems as the rest of the group. The most common problems across the age groups were failing to pay attention (70 %) and incomplete homework (55–60 %). The most common behavioral problem was being disruptive in class (55–60 %) and not getting along with peers (60 %).
Trouble with the law: 60 % of the young adults and as many as 14 % of the children had had trouble with the law, with shoplifting as the most common offence. Among adolescents and adults above 12 years of age, 60 % were referred to the juvenile justice system, and more than 40 % were given juvenile prison sentences; 46 % received a suspended sentence, and 39 % were sentenced to community service. The study found a clear correlation between a disrupted school experience and trouble with the law.
Confinement (incarceration or involuntary hospitalization or treatment): 50 % of the adolescents and adults but fewer than 10 % of the children had experienced some sort of confinement.
Inappropriate sexual behavior: 49 % of the adolescents and adults and 39 % of the children displayed inappropriate sexual behavior, which makes this category the second-most common secondary disability for children. The most common inappropriate sexual behaviors were sexual advances (18 %), sexual touching (16 %) and promiscuity (16 %).
Alcohol and drug problems: 35 % of the adolescents and adults (and none of the children) had problems in this area. Many in the surveyed group were completely abstinent. The most common reason stated for abstinence was lack of access to alcohol followed by personal conviction.
Ann Streissguth and her team were greatly surprised by the prevalence of secondary disabilities and the detrimental effect on the individual person’s quality of life. Undoubtedly, better protection and support for this group of children, adolescents and adults requires increased understanding among teachers, caretakers, social workers and society at large.