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Students with Fetal Alcohol Syndrome:
New Developments and Intervention Suggestionsby Darcy Miller
Fetal Alcohol Syndrome (FAS) has long been recognized by physicians, educators, parents, and social service agency personnel as a significant disability. This syndrome is caused by the mother's alcohol ingestion during pregnancy. One of the leaders in the field, Ann Streissguth, has dedicated a great deal of her professional efforts to furthering our understanding of FAS, examining prevention possibilities, and exploring options for interventions (Streissguth, 1997). Recently, Astley and Clarren (2000) have developed an effective evaluation approach that will improve our efforts at diagnosing and preventing FAS. Along with their colleagues (e.g., Clarren, Carmichael Olson, Clarren, & Astley, 2000; Coggins, Olswang, Carmichael Olson, in press; Olson, Feldman, Streissguth, Sampson, & Bookstein, 1998), Astley and Clarren (2000) and Streissguth (1997) have expanded our knowledge base about a wide variety of issues related to FAS, including the identification of learning characteristics, developing new programming ideas, and targeting community supports needed for these students.
These advances in both the diagnosis of FAS and effective interventions hold implications for educational, behavioral, and vocational programming for students with FAS. Exploring these new developments and providing intervention suggestions can be of benefit to those who are involved in the lives of students with FAS, from teachers, to counselors, to parents, to social services personnel.
New Developments
Probably one of the most significant developments in the recent past is the new 4-Digit Diagnostic Code used to identify students with FAS (Astely & Clarren, 2000). Previous to this new evaluation approach, FAS was diagnosed using a wide variety of nonstandardized and fairly vague methods, which resulted in misdiagnoses, including both under- and over-representing the syndrome among different populations of students.The 4-Digit Diagnostic Code is used by multidisciplinary clinical professionals (e.g., physicians, psychologists, educators, speech and language pathologists, etc.) to indicate the severity or risk in four key areas of the diagnosis: growth deficits, facial anomalies, brain function, and alcohol exposure in utero. Using comprehensive assessment data and standardized evaluation procedures, each of these four areas is assigned a number, from 1 (no evidence/no risk), to 4 (severe/high risk). Ratings are assigned based on assessment findings from medical, psychological, educational, and family history data. To assign a number to the alcohol exposure category, clinicians gather family history documents and interview the parents, guardians, or foster parents to find out the extent and frequency of the birth mother's alcohol ingestion during pregnancy.
There are 256 possible diagnostic codes ranging from 1111 to 4444 (Astley, 2004), with the combination of numbers ("codes") corresponding to an array of diagnoses across what is now being referred to as Fetal Alcohol Spectrum Disorders. These disorders can include Fetal Alcohol Syndrome, neurobehavioral disorder, static encephalopathy, and sentinel physical findings. (For those interested in learning more about the 4-Digit Diagnostic Code and the standardized assessment procedures, visit http://depts.washington.edu/fasdpn/, the website of the Fetal Alcohol Diagnosis and Prevention Network, at the University of Washington, Seattle, WA).
In addition to having a more scientific and standardized 4-Digit Diagnostic Code, new information on the characteristics of students with FAS (and those with Fetal Alcohol Spectrum Disorders) has also advanced our ability to design programs that meet these students' needs. For example, in the past it was generally assumed that any student with FAS would also have mental retardation. We are now seeing that students with FAS may or may not be mentally retarded, and in fact demonstrate a range of intellectual abilities (Kerns, Don, Mateer, & Streissguth, 1997). Students with FAS may exhibit typical levels of intelligence but experience learning disabilities or behavior disorders. Because of their diverse abilities, challenges, and characteristics, students with FAS usually qualify for special education services by meeting the criteria for a wide range of disability categories, from mental retardation, to learning disabilities, to health impaired (Gessner, Bischoff, Perham-Hester, Chandler, & Middaugh, 1998).
As a result of recent research on the language characteristics of students with FAS, we have also gained new knowledge about these students' ability to communicate and socially interact with others. We now know that students with FAS can score within normal limits on standardized speech and language tests, and yet still experience challenges and difficulties in the use of language, in understanding language, and in social communication areas (Streissguth, Barr, Kogan, & Bookstein, 1997). Some students may even appear to others as very verbal, especially talkative, and quite interactive, while at the same time be challenged by using language to negotiate peer interactions, interpret social interaction situations, or understand others' perspectives (which is needed to be an effective communicator) (Coggins, Friet, & Morgan, 1998; Coggins, Olswang, Carmichael Olson, & Timler, in press).
Another development in our knowledge about students with FAS is the difficulty they may have in understanding abstract concepts, such as the concept of "cause and effect" or the concept of "consequences," which can impact their ability to learn and behave appropriately (Streissguth, et al., 1997). Although these are abstract concepts, the practical outcome of not understanding the ideas of cause/effect and consequences, can be that these students may not learn from their errors or mistakes (e.g., If I do this, then "x" will happen) or may not be able to foresee the consequences of their actions (e.g., If I jump off my bunk bed, I will get hurt). Learning from one's mistakes is a key component of overall learning in both the academic and behavioral/social arenas. With deficits in these areas, students are likely to experience numerous problems in reading, math and other academic subjects, face challenges in learning social skills, and encounter barriers to developing self-management strategies.
Intervention Suggestions
As a result of integrating our new and existing knowledge about the diagnosis and characteristics of students with FAS and other related conditions along the spectrum of alcohol-related disorders, interventions can now be better tailored to the specific and unique characteristics of these students. Five key suggestions, developed from clinical work and the recent research on FAS, can help parents, teachers, social workers, and others involved with students who have FAS design programs that positively impact academic, social, and behavioral outcomes for these students (Miller, 2003, 2004; Miller & Emerson, 2004).Begin with Comprehensive Assessment Data
A solid individualized assessment of the student's capabilities across academic, social, cognitive, language, physical, and psychological/behavioral domains is key to designing appropriate interventions. A good beginning point is to bring the student to a clinic that is using the 4-Digit Diagnostic Code to see if the student actually meets the diagnostic criteria of having FAS, or some other condition along the spectrum of alcohol related disorders. (See http://depts.washington.edu/fasdpn/, the website of the Fetal Alcohol Diagnosis and Prevention Network, at the University of Washington, for more information about the locations of clinics using this approach.) The professionals in these clinics will help assemble assessment data across multiple domains of functioning, which is a good foundation upon which to build a program.For example, assessment information on the student's ability to understand abstract concepts, use language to negotiate peer interactions, process auditory and visual information, understand and remember directions, problem solve in novel situations, and so on, will provide the intervention team with important information for developing goals and objectives in all program areas. Without the proper assessment information, goals and expectations set by intervention teams (e.g., IEP teams) might be set too high, too low, or focused on inappropriate areas, such as those not needing intervention.
Use a Team Approach to Planning and Intervention
In addition to using a multidisciplinary team for assessment purposes, a team approach to designing and implementing interventions is also critical. A team approach, including parents/guardians, assures diverse perspectives are brought to the process of program design. Students with FAS often need intervention in academic areas, and therefore need the expertise of a special education teacher. But they are likely to have speech/language problems, social/emotional issues, behavioral regulation difficulties, as well as fine and gross motor deficits. To design a program that meets the complex needs of these students across a wide range of domains, professionals from multiple disciplines are needed.Ideally, social workers or case managers, and other social service agencies should be involved also because the student's needs extend beyond the school environment, into the home and community. Counseling may have to be arranged by the case manager, and the counselor will then need to be included on the team. Respite care for the parents/guardians may be important and can be arranged by a social worker. The variety of services and resources that might be needed by students with FAS require that a comprehensive program be developed. This, in turn, requires there be a "comprehensive" team, one that represents multiple disciplines and services.
Provide Effective Instruction and Behavior Supports
Students with FAS and related disorders need a healthy balance of direct instruction and student choice in learning. That is, there will be areas of learning that require teacher directed and guided instruction, and conversely, areas of learning that will be more conducive to individual creativity and exploration. Most academic areas, such as reading, math, and writing, demand a gradually increasing understanding of abstract concepts. Direct instruction in these areas is essential, if students with FAS are to develop foundational, as well as advanced skills. For more creative and constructivist types of learning opportunities, teachers should identify the strengths and interest areas of the students with FAS, and then design instructional activities that emphasize student choice, self-directed learning, exploration of ideas, and problem-solving skills. These types of learning activities can be implemented using groups of peers with independent learning styles, or through individualized projects.Behavior management is often a key target area for intervention for students with FAS who experience behavior challenges. Many of these students also have attention problems and may be diagnosed with Attention Deficit Hyperactivity Disorder too. Often, individual behavior contracts and very clear, concrete behavior management interventions (e.g., token economies, point systems) are most effective with these students. In addition to focusing on the individual behaviors of the student, teams should employ a "positive behavior support" paradigm (Bambara, Dunlap, & Schwartz, 2004) that targets not just the behavior of the student, but also focuses on providing positive behavior supports in all of the environments in which the student learns, socializes, and lives.
In other words, it's not just the behavior of the student that might need to change, but it is also the staff available, the level of expectations, or perhaps the type of supports surrounding the student that might need to be modified to accommodate for the student with FAS. Supports in the environment (e.g., shorter class time, providing an aide, tutoring and homework assistance, peer buddies, or changing the student's schedule during the school day) should be considered for their potential to prevent behavior problems from occurring. These positive supports create affirmative learning opportunities and space for constructive progress, as opposed to exposing the student to settings that elicit failure and problems.
Monitor and Adjust Interventions
The team needs to continually monitor the student's progress and collect data for monitoring and evaluation purposes (i.e., to indicate the success/failure of a program). The behavior management, academic, as well as social and mental health interventions should have built-in data collection strategies so the team has clear information as to the progress of the student and the effectiveness of the program. Based on rigorous and continual monitoring data, teams can then adjust and modify programs, as the student changes, progresses, and develops both physically and mentally.Frequent team meetings are essential, during which all aspects of the student's program are discussed. Communication across environments, from the home, school and community is a critical component of effective intervention programs. Through these meetings, teams will be able to spot any problems early on, identify needed resources, obtain further expertise (e.g., medical, vocational), and re-design interventions when necessary.
Include Families, Communities in Program Development
Students with FAS may be in foster care; living with guardians, relatives, or adoptive families; or living with their birth mothers and fathers. Each of these parenting and family arrangements will present different issues for the team to consider when designing intervention programs. Therefore, it is critical that a collaborative approach be applied to programming, an approach that includes families in the development, monitoring, and evaluation of any intervention program for the student with FAS. A variety of community factors and services, from respite care to family counseling may need to be addressed by the team, if an effective program is to be developed.Students with FAS also need community support. Many of these students benefit from structured social and athletic activities after school. These program elements may prevent the student from engaging in inappropriate behavior, such as stealing or fighting, but they also provide additional opportunities to work on program goals and objectives, such as improving social skills and behavioral regulation. Working with community agencies, such as Big Brother, Boys and Girls Clubs, YMCAs, etc., the team can look beyond the school day and assist families in providing cohesive intervention in community settings. Additionally, finding mentors for these students, people who will accompany them to museums, sporting events, or social activities will enhance the overall program with supplementary instruction in authentic settings. With training, the mentors can be instructed in how to encourage the student's positive social skills and interactions, as well as how to assist the student with behavioral regulation, making friends, and accessing community services.
Summary
With more clarity on the diagnosis of FAS, as well as an enhanced understanding of the characteristics and needs of students with FAS, we are better able to provide more effective programming in both schools and communities. However, this task is not an easy one – it requires excellent assessment information; an inclusive, multidisciplinary team approach; effective instruction and management; continual monitoring; and collaboration with families and community services personnel. However, if we want students with FAS to experience positive outcomes in classrooms, communities, and the workplace, integration of our new knowledge about FAS with a comprehensive approach to intervention is essential.
References
Astley, S.J. (2004). Diagnostic guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code. Seattle, WA: The University of Washington.
Astley, S.J. & Clarren, S.K. (2000). Diagnosing the full spectrum of fetal alcohol exposed individuals: Introducing the 4-Digit Code. Alcohol & Alcoholism, 35, 400-410.
Bambara, L.M., Dunlap, G., & Schwartz, S. (Eds.) (2004). Positive behavior supports: Critical articles on improving practice of individuals with severe disabilities. Austin, TX: Pro-Ed and TASH.
Clarren, S.K., Carmichael Olson, H., Clarren, S.G., Astley, S. (2000). A child with fetal alcohol syndrome. In M.J. Guralnick (Ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities. Baltimore: Paul H. Brookes.
Coggins, T.E., Friet, T. & Morgan, T. (1998). Analysing narrative productions in older school-age children and adolescents with fetal alcohol syndrome: An experimental tool for clinical applications. Clinical Linguistics and Phonetics, 12, 221-236.
Coggins, T.E., Olswang, L.B., Carmichael Olson, H., & Timler, G.R. (in press). On becoming socially competent communicators: The challenge for children with fetal alcohol syndrome. In L.M. Glidden (Ed.), International Review of Research in Mental Retardation. Burlington, MA: Elsevier/Academic Press.
Gessner, R., Bischoff, H., Perham-Hester, K. Chandler, B. & Middaugh, J. (1998). The educational attainment of children with fetal alcohol syndrome: Recommendations and reports. Juneau, AK: Alaska State Department of health and social Services, Division of Public Health.
Kerns, J., Don, A., Mateer, C., & Streissguth, A. (1997). Cognitive deficits in nonretarded adults with fetal alcohol syndrome. Journal of Learning Disabilities, 30, 685-693.
Miller, D. (2003, October). Advances in the diagnosis and understanding of Fetal Alcohol Syndrome: Exploring programming ideas and strategies. Invited paper, Washington State Association of School Psychology, Spokane, WA.
Miller, D. (2004, October). Responding to the needs of students with fetal alcohol syndrome: Strategies and programming ideas. Invited paper presented at the Washington Association of School Social Workers, Lake Chelan, WA.
Miller, D. & Emerson, R. (2004, June). Fetal alcohol syndrome: Diagnosis and intervention. Fetal Alcohol Syndrome Seminar, Walla Walla Community College, Clarkston, WA.
Olson, H.C., Feldman, J.J., Streissguth, A.P., Sampson, P.D., & Bookstein, F.L. (1998). Neuropsychological deficits in adolescents with fetal alcohol syndrome: Clinical findings. Alcoholism Clinical and Experimental Research, 22, 1998-2012.
Streissguth, A.P. (1997). Fetal alcohol syndrome: A guide for families and communities. Baltimore, MD: Paul. H. Brookes Publishing.
Streissguth, A.P., Barr, J., Kogan, J. & Bookstein, F. (1997). Primary and secondary disabilities in Fetal Alcohol Syndrome. In A. Streissguth, & J. Kanter (Eds.) The challenge of Fetal Alcohol Syndrome: Overcoming secondary disabilities (pp. 25-39). Seattle, WA: University of Washington Press.
Dr. Miller received her Ph.D. in Special Education from the University of Wisconsin in 1986. Since that time she has been active in special and general education research, teacher preparation, and service through national and regional leadership roles. At Washington State University, Dr. Miller teaches undergraduate/graduate courses in Educational Psychology and Special and General Education, with a focus on assessment, instruction, legal aspects, classroom management, research methodology, and inclusion. Dr. Miller also serves as the Educational Diagnostician for the Southeast Regional Fetal Alcohol Syndrome Diagnosis and Prevention Clinic. She has published on such subjects as fetal alcohol syndrome, classroom management, adolescents with behavioral/emotional disorders, juvenile offenders, and students at risk. Dr. Miller has provided numerous workshops for social service agencies, school personnel, and families on issues relevant to students with disabilities and those at-risk. darcymiller@wsu.edu
©September 2005 New Horizons for Learning
This information is provided by a grant from the
Office of State Superintendent of Public Instruction
Special Education
P O Box 47200
Olympia, WA 98504-7200
(360) 725-6088
Fax (360)586-1631
E-mail: dgill@ospi.wednet.edu
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