FASD is not a diagnosis, but rather a combination of birth defects and behavioral challenges in children whose mothers drink alcohol during pregnancy. FASD is highlighted in this report to increase awareness about the condition and make recommendations regarding needed improvements in the service delivery system to better support individuals and their families.
Characteristics of FASD
FASD is the leading cause of developmental disabilities. Children affected by FASD typically have a reduced head size and brain damage. As a direct result of mental retardation and brain damage associated with FASD, children also have immature social skills and behavior. Some of the facial characteristics are small nose bridge, flat midface, thin upper lip and a smooth philtrum. Children with these disorders may also have low birth weight and continue to be small through puberty. Many children have a lower than normal IQ and face numerous learning and behavior problems. Exposure to alcohol during prenatal development may increase the incidence of hyperactivity and short attention spans. Many children affected by FASD experience multiple health problems. Another complication is they often lack health insurance to cover their medical needs.
Problems of FASD
The estimate for lifetime care for a person with FASD is in the millions, while 2003 estimates indicate that prevention can cost as little as $5,000.[15. The Agenda Building FASD State Systems, FASD Center News, Vol 1 Iss 1, Fall 2003, p.1.] State services available to individuals with developmental disabilities often do not include persons affected by FASD. The structural brain damage unique to prenatal alcohol exposure often results in cognitive and/or functional disabilities that do not meet current Medicaid program eligibility.[16. F.A.S. Times Spring 2008.] FASD is not recognized as a disability in schools for IDEA assistance, thus many states are currently working on a FASD diagnostic code.
The damages created by alcohol during the nine months of pregnancy are very devastating to the unborn child. Many children struggle through the day to day frustration of inconsistent mastery of skills and spotty memory. They often have trouble generalizing information and perceiving similarities and difference. Many children affected have impaired impulse control. Children with FASD may have episodes of rage, the inability to make good judgments, eating and sleeping problems, and trouble distinguishing truth from fiction.[17. Kathryn Page, Ph.D., “The Invisible Havoc of Prenatal Alcohol Damage,” Journal of the Center for Families, Children and the Courts, 2002.] Because of the serious and irreparable brain damage caused by alcohol use during pregnancy many children are not self-sufficient in adulthood. They are unable to obtain or maintain sustainable employment. They may also experiment with drugs and alcohol or be involved in the criminal justice system.
Diagnoses pose a greater set of problems and obstacles for families with a child who has prenatal alcohol exposure. FASD is rarely covered in medical school curriculum; according to a recent study only about 17 percent of recent obstetric-gynecologic textbooks recommend abstinence from alcohol during pregnancy.[18. Kathryn Page, Ph.D., “The Invisible Havoc of Prenatal Alcohol Damage,” Journal of the Center for Families, Children and the Courts, 2002.]
Physicians may be reluctant to diagnose this condition, after birth, partly to avoid inducing guilt in the mother and labeling the child. One physician’s statement may help explain why children are not identified, “If we diagnose it, we have to treat it, and we don’t have the resources to do that”.[19. Kathryn Page, Ph.D., “The Invisible Havoc of Prenatal Alcohol Damage,” Journal of the Center for Families, Children and the Courts, 2002.] Quite often children with FASD are misdiagnosed with other disabilities because it so often mimics other disorders such as ADHD. Many physicians hesitate to diagnosis FASD without proof of alcohol use during pregnancy. Many obstacles impede the discovery of alcohol use in pregnancy, such as the birth mom may not be around, she may be unwilling to admit use of alcohol, and she may not remember her alcohol use during that time.
According to experts, physicians are not the only professionals who should know about FASD. There is practically no training on FASD in disciplines such as education, social work, health professions, juvenile justice, and other systems responsible for the care of people at risk.
Needs of Population Affected by FASD
- There is a need for resources for both prevention and treatment, and collaboration across State agencies.
- Proper diagnosis and comprehensive services are in great demand but not readily available.
- Increased public awareness that there is no safe level of alcohol use during pregnancy.
- Educators have indicated a need for support and training regarding educating students with FASD. A 1995 survey of special education divisions in each of the 50 states revealed that none recognized or specifically served the needs of students based on a diagnosis of FAS, nor did they have plans to do so (Wentz, 1997).[20. Fetal Alcohol Syndrome (Streissguth, Ann).]
Obstacles Faced by Population Affected by FASD
Children with FASD face a lifetime of problems. They are at an increased risk for secondary effects such as mental illness, drug and alcohol addiction, dropping out of school and incarceration.[21. Meeting the Needs of Children and Families Impacted by Fetal Alcohol Spectrum Disorders (FASD) Illinois FASD Task Force.] According to the Florida Center for Child and Family Development, Inc., about 70 percent of individuals with FASD will have problems with employment. About 82 percent will not be able to live independently. Fewer than 10 percent of individuals with FAS are able to live on their own regardless of their IQ.[22. Florida Center for Child and Family Development, Inc.]
Texas lacks resources to offer specialized services, such as a training curriculum to learn how to better serve this population, inpatient residential treatment, transitional housing for adults, and medical and mental health services.[23. Heather Carmichael Olson, Ph.D., A Continuum of Initial FASD Intervention Services.] With the current lifetime care estimates as high as $5 million,[24. Dr. Beth Pomeroy and Danielle E. Parrish, MSW, Doctoral Student, Disabilities Tip Sheet-Fetal Alcohol Spectrum Disorders: What Everyone Should Know.] many families will not have the money to provide long term allocation of resources to support their children into adulthood.
TOPDD Recommendations for Addressing Fetal Alcohol Spectrum Disorders (FASD)
- Increase services for awareness, prevention, and intervention for individuals at risk for FASD.
- Develop and offer pre-service education and continuing education training for paraprofessionals and professionals in a wide range of disciplines.
- Establish supervised living arrangements for adults affected by FASD.
- Advocate recognition of the disorder by Medicaid and insurance companies, so that all diagnostic and treatment work are reimbursable.
- Support community services to assist families with children affected by FASD to remain in a stable and caring environment, i.e. home.