Secondary Disabilities in FASD

2000-2002 Teresa Kellerman

Based on the Final Report from Research on Secondary Disabilities by Ann Streissguth, presented to the FAS Conference in Seattle in September of 1996 

Primary Disabilities refer to the brain damage that results in impaired mental function of persons with Fetal Alcohol Spectrum Disorders (FASD).  Primary Disabilities are measured by general intelligence, mastery of reading, spelling, math, and level of adaptive functioning, representing the CNS manifestations of FASD. The sample of 473 individuals in the study included 178 with Fetal Alcohol Syndrome (FAS) and 295 with Fetal Alcohol Effects (FAE). The range of IQ of individuals with FAS was from 29 to 120, with mean IQ of 79. Range of IQ of individuals with FAE was from 42 to 142, with mean IQ of 90.  Only 16% of all the individuals with FASD in this study legally qualify as having mental retardation.  This means that 86% of the individuals with FASD have an IQ in the "normal" range and do not qualify for services for developmental disabilities.  They nevertheless have impaired mental functioning caused by brain damage that is permanent and incurable.

The academic abilities of individuals with FASD are below their IQ level, and their living skills, communication skills and adaptive behavior levels are even further below IQ levels. For example, a person with FAS with an IQ of 80 may have a reading IQ of 78, a spelling IQ of 75, a math IQ of 70, daily living skills IQ of 68, socialization skills IQ of 65, communication IQ of 62 and adaptive behavior IQ of 60. This indicates that when a person with FAS/FAE is evaluated, a battery of tests be done that include a test of level of functional abilities and daily living skills.

Secondary Disabilities are those not present at birth but occur as a result of the primary disabilities.  Secondary disabilities can presumably be prevented or lessened by better understanding and appropriate interventions.  Secondary disabilities were ascertained from life history interviews of 415 individuals with FASD using 450 questions. Six main categories are defined:

* Mental Health Problems, the most prevalent secondary disability, experienced by 94% of the full sample.  During childhood, 60% of children with FASD have ADHD.  During adulthood, most adults with FASD have clinical depression.  The study revealed that 23% of the adults had attempted suicide, and 43% had threatened to commit suicide.

* Disrupted School Experience (suspension or expulsion or drop out), was experienced by 43% of children of school age.  By the time students with FAE reach adulthood, the rate of disrupted school experience peaks at 70%.  Common school problems include: not paying attention; incomplete homework; can't get along with peers; disruptive in class; disobeying school rules; talking back to the teacher; fighting; and truancy.

* Trouble with the Law (involvement with police, charged or convicted of crime), was experienced by 42% of those in the study, and by about 60% of those age 12 and over.  The most common first criminal behavior reported was shoplifting.  The most common crimes committed (by almost half of individuals with FASD age 12-20) were crimes against persons (theft, burglary, assault, murder, domestic violence, child molestation, running away), followed by property damage; possession/selling; sexual assault; and vehicular crimes.

* Confinement (inpatient treatment for mental health, alcohol/drug problems, or incarceration for crime), experienced by 60% of those age 12 and over.  Over 40% of adults with FASD had been incarcerated; about 30% of adults with FASD were confined to a mental institution; and about 20% had been confined for substance abuse treatment.

* Inappropriate Sexual Behavior was reported in 45% of the those age 12 and over, and 65% of adult males with FAE.  This includes only sexual behaviors that had been repeatedly problematic or for which the individual had been incarcerated or treated.  It is thought that the actual incidence of inappropriate sexual behavior is much higher, and not always reported by the individual or the family due to embarrassment or fear of being reported to authorities.  Problem sexual behaviors most common with FASD include: sexual advances; sexual touching; promiscuity; exposure; compulsions; voyeurism; masturbation in public; incest; sex with animals; and obscene phone calls.

* Alcohol/Drug Problems were experienced by 30% of individuals age 12 and over.  Of the adults with FAE, 53% of males and 70% of females experienced substance abuse problems.  This is more than 5 times that of the general population.

To determine levels of independence in adulthood, two additional categories were identified for individuals 21 years of age and older (median age 26):

* Dependent Living was the situation for about 80% of adults with FASD.

* Problems with Employment were indicated in 80% of adults with FASD. 

Only 8% of the individuals in the study had no problem with independent living or employment.

Problems With Parenting: Of the 100 females of childbearing age, 30 had given birth; 40% drank during pregnancy, more than half no longer had the child in their care.  Of their children, 30% have been diagnosed with or suspected of having FASD.

Risk Factors:  The greatest risk factors associated with secondary disabilities in FAS/FAE are shown by the studies to be:

* IQ over 70 (those with lower IQ's are likely to get more services and intervention)

This means that individuals with FAE are at greater risk than those with FAS.

* Exposure to violence (sexual and/or physical abuse), which occurs at rate of 72% of individuals with FASD.  Those exposed to violence are four times as likely to exhibit inappropriate sexual behavior.

Protective Factors:

* Early diagnosis is a universal protective indicator for all secondary disabilities. Only 11% of individuals with FASD were diagnosed by age 6. Every effort must be made to attain early diagnoses for children with FAS and FAE.

* Eligibility for services from DD division of state is another strong protective factor. These services are needed by most individuals with FASD, yet most do not qualify.

* Living in stable home with nurturing parents and minimum of changes in household.

* Protection from violence, from witnessing or being victimized by violence.

Recommendations:

* Develop statewide diagnostic clinic.

* Parent/citizen education centers re intervention/services for persons with FASD.

* Agency representative in fields of Mental health, education, criminal justice system, alcohol/drug abuse treatment, health department.

* Fund further research.

* Modify eligibility criteria for DD services, and provide adequate services for those with FASD.

* Fund and implement long-term residential/job training programs for persons with FASD.

* Promote prevention programs (education, alcohol abuse treatment, advocacy, birth control).


Citation: Streissguth, A.P., Barr, H.M., Kogan, J. & Bookstein, F. L., "Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE)," Final Report to the Centers for Disease Control and Prevention (CDC), August, 1996, Seattle: University of Washington, Fetal Alcohol & Drug Unit, Tech. Rep. No. 96-06, (1996).


Read more about Dr. Streissguth's studies on secondary disabilities in her book:

The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities

www.fasstar.com  ~  this article was updated May 31, 2003

Centers for Disease Control statement on secondary conditions

FAS Community Resource Center