Fetal Alcohol Syndrome and Associated Disabilities:

A Training Manual to Aid in Vocational Rehabilitation

and Other Non-medical Services

August 18, 2003

Robert M. Schacht, Ph.D.

Robin A. LaDue, Ph.D.

With contributions from:

Patricia Tanner-Halverson, Ph.D.

Georgiana Wilton, Ph.D.

(Project Number R-54)

Northern Arizona University

Institute for Human Development

Arizona University Center on Disabilities

American Indian Rehabilitation Research and Training Center

PO Box 5630

Flagstaff, Arizona 86011

(928) 523-4791

ISBN

Funded by the National Institute on Disability and Rehabilitation Research (NIDRR), Office of Special Education and Rehabilitative Services, U.S. Department of Education, Washington, DC

Grant No. H133B30068

The contents of this report are the responsibility of the American Indian Rehabilitation Research and Training Center; no official endorsement by the U.S. Department of Education should be inferred.

This report is available in alternate formats by contacting the Institute for Human Development at (928) 523-4791.


FOREWORD

     This training manual is a compilation of many years of research and experience in the fields of fetal alcohol syndrome (FAS) and vocational rehabilitation (VR). It is a revised and expanded version of Fetal Alcohol Syndrome: A Manual to Aid in Vocational Rehabilitation and Other Non-Medical Services.  FAS is both a complicated condition and a simple one if the reader will remember that the primary condition associated with FAS is permanent brain damage.  Due to the complexities of this field, however, the training of others in FAS is not a task to be taken lightly.  This manual does not fully include the guidance and feedback given by professional trainers.  Therefore, this manual was intended for use by non-medical service providers in training workshops by properly trained professionals.

Robert M. Schacht, Ph.D.

Research Associate

American Indian Rehabilitation Research &  Training Center

Institute for Human Development

Arizona University Center on Disabilities

Northern Arizona University

PO Box 5630

Flagstaff, AZ 86011

Telephone: 928-523-1342

Fax: 928-523-9127

Email: Robert.Schacht@nau.edu

Robin A. LaDue, Ph.D.

Clinical Associate Professor

The Native American Center for Excellence

Department of Psychiatry and Behavioral Sciences

University of Washington

1500 Benson Road South #202

Renton, WA 98055

Telephone: 425-277-5616

Fax: 206-782-8312

Email: 71524.2541@compuserve.com

Cover Art:  Raoul Imbert, Seattle, WA
TABLE OF CONTENTS

FOREWORD.. ii

TABLES  vi

LIST OF FIGURES. vi

I.  UNDERSTANDING WHAT FETAL ALCOHOL SYNDROME IS AND WHAT IT IS NOT.... 4

Terminology. 4

Diagnosis. 5

Does It Help to Obtain a Diagnostic Examination?. 8

Embryology. 10

II.  PRIMARY AND SECONDARY DISABILITIES ASSOCIATED WITH FAS AND ARND..... 13

Terminology. 13

Primary Disability. 13

Disabilities Commonly Associated with FAS/ARND.. 14

Learning Disabilities (NEW)

Depression (NEW)   .

Mental Retardation (NEW)

Receptive-Expressive Language Disorder (NEW)

Attention Deficit Hyperactivity Disorder (NEW)

Oppositional Defiant Disorder (ODD) (NEW)

Other Comorbid Medical Conditions Affecting Disabilities. 35

Hearing Impairments and Otitis media. 36

Visual Impairments. 37

Summary. 37

Secondary Disabilities/Conditions. 38

Functional Limitations (Revised). 42

The Need for Vocational Rehabilitation.. 51

III.  SCREENING AND FUNCTIONAL ASSESSMENT.. 52

FASNET Assessment Tool 53

Astley-Clarren Grid. 54

Fetal Alcohol Behaviors Scale (FABS). 59

Fetal Alcohol Exposure Risk Assessment For Adolescents And Adults. 60

Adaptive Behavior Assessment 61

Screening and Assessment of Co-occurring Disabilities(NEW) 67

Mental Retardation (NEW). 67

Learning Disabilities(NEW). 67

Mood disorders (NEW). 67

IV.  DEVELOPING AN INDIVIDUALIZED PLAN.. 68

Person-Centered Planning. 68

Identifying Data. 70

Diagnoses. 70

Background Information. 71

Assessment Instruments Administered and Results. 71

Planning Considerations. 71

Summary and Recommendations. 72

Case Studies. 72

Exercise: Case Study #1:  Andrea K. 73

Special Considerations for Different Individualized Plans. 76

ISP: Special Considerations. 76

Exercise: Case Study #2: Gerry G. 78

IEP: Special Considerations. 82

IPE: Special considerations. 84

Exercise: Case Study #3:  Matthew B. 86

Legal Proceedings (NEW) 89

Decline/Remand. 90

Competency/Capacity. 91

Trial 91

Incarceration. 93

Sentencing. 93

V.  IMPLEMENTING AN INDIVIDUALIZED PLAN.. 95

Identifying Resources. 95

Team Building. 96

Strategies for Maximizing Success. 96

Interventions for Persons with FAS/ARND and Persons with LD.. 101

Facilitating employment success. 102

Vocational development for individuals with Fetal Alcohol Syndrome or Fetal Alcohol Effects: Part I 104

Supported Employment 109

Job Coaches. 110

Troubleshooting. 110

Exercise: Case Study #4:  Treena S. 112

VI.       EVALUATION.. 116

Exercise #5. 116

REFERENCES. 118

Paton, J. (n.d.a). Central Auditory Processing Disorders (CAPD's). Retrieved August 26, 2003 from http://www.ldonline.org/ld_indepth/process_deficit/capd_paton.html 125

Appendix A: 128

FETAL ALCOHOL EXPOSURE RISK ASSESSMENT FOR ADOLESCENTS AND ADULTS. 128

Appendix B: 136

PSYCHOSOCIAL NEEDS ASSOCIATED WITH FETAL ALCOHOL SYNDROME.. 136

Appendix C: 143

VOCATIONAL DEVELOPMENT FOR INDIVIDUALS WITH FAS/FAE.. 143

Appendix D: 145

ABBREVIATIONS USED IN THIS MANUAL. 145


TABLES

Table 1. Learning problems........................................................................ 18

Table 2.

Table 3. Observed behavior and neuropathology........................................... 35

LIST OF FIGURES

FIGURE 1:  The Astley-Clarren Grid........................................................... 22

FIGURE 2:  Sample Case Using the Astley-Clarren Grid................................ 23


Fetal Alcohol Syndrome and Associated Disabilities:

A Training Manual to Aid in Vocational Rehabilitation

and Other Non-medical Services

“Let us put our heads together and see what kind of life

we can make for our children.”

–Sitting Bull

Self-determination has been a phrase to live by in Native communities since the Indian Self-Determination Act was passed in 1975.  It is a marvelous concept and one to be embraced.  But . . .  What if you are a child, adolescent, or adult with prenatal exposure to alcohol?  Self-determination can, if preventive steps are not taken, turn into self-termination. We embrace person-centered planning. However, this is not the same as person-dictated planning. American Indians and Alaska Natives place a high value on family and community, and each has its place in the planning process. Thus, planning is collective as well as person-centered.

The purpose of this training manual is to provide vocational rehabilitation (VR) counselors, school counselors and other non-medical service providers with background information and tools as an adjunct to training.  With this information, trainees will be better equipped to participate in planning more effective services for people with fetal alcohol syndrome (FAS) and related conditions, to fulfill educational or employment goals and to reach their full potential.

Since FAS was first defined as a medical syndrome in 1973, the extent of knowledge in the field has expanded dramatically.  The highest incidence rates yet reported are associated with certain American Indian reservations and Canadian reserves, although the incidence rates in other American Indian communities are less than the national average (Stratton, Howe, & Battaglia, 1996, pp. 83–89).  Until six years ago, the most recent reliable data (for the year 1990) for American Indians and Alaska Natives showed a rate of FAS that, at 5.2 per 1,000 was more than 10 times the rate for the total population (Boufford, 1997). More recent data (1993), while less reliable, indicated even higher rates for American Indians and Alaska Natives (Boufford, 1997). Since then, controlled surveys in four states (Alaska, Arizona, Colorado, and New York) have indicated a prevalence rate of 3.2 per 1,000 for American Indians, compared with an overall rate of 0.4 per 1,000 (Centers for Disease Control, 2002). A recent estimate for the U.S. is a FAS rate of 1.95 per 1,000 live births, although estimates run as high as 3.0 per 1,000 -- about 12,000 babies a year (Center on Addiction and Substance Abuse, 1996, p. 53.).  

As American Indian and Alaska Native adults who can compete in the modern labor market leave their communities for higher paying jobs elsewhere, the number of adults who have fetal alcohol syndrome (FAS) or alcohol-related neurodevelopmental disorders (ARND) in these communities may become more inflated, and may become a more noticeable and significant problem requiring attention.  People who are diagnosed with FAS/ARND are at high risk for mental retardation, learning disabilities, attention deficit disorder, and other disabilities.

This manual is intended to aid the trainee in the following areas:

·     Understanding what fetal alcohol syndrome is and what it is not (Section I).  This section of the manual presents the current definitions of FAS and ARND.  Included in this section are a summary of the diagnostic process and an outline of the embryological origins of FAS.

·     Recognizing and assessing primary and secondary disabilities associated with FAS/ARND (Section II).  This section explores the common primary and secondary disabilities or conditions associated with FAS and ARND as well as their impact on long-term functioning and vocational placements.

·     Screening for FAS or ARND (Section III).  The third section explores the common tools used in the functional assessment of people with FAS and ARND.  One of the items, the Fetal Alcohol Exposure Risk Assessment For Adolescents And Adults, is intended to help the vocational high school counselor screen for FAS/ARND and, if appropriate refer for a diagnostic evaluation or further testing.

·     Developing an individualized plan for employment, education, services, or programs (Section IV).  The fourth section is a practical guide for using the material gained through assessment and screening of the client to write a viable, appropriate, and practical individualized plan [(Individualized Education Plan (IEP), Individualized Service Plan (ISP), or Individualized Plan for Employment (IPE)].  Three case studies are provided to help illustrate the points outlined above.  Trainees are asked to use the knowledge gained to outline an appropriate plan for each of these case studies.

·     Designing and aiding the implementation of an individualized plan (Section V).  The fifth section shows trainees how to design and aid the implementation of an individualized plan.  A fourth case study is provided to give trainees practice with this process.

·     Evaluate how a plan is working and make adjustments (Section VI).  This final section aids the trainee in learning how to provide ongoing program evaluation and implementing any needed changes.


I.  UNDERSTANDING WHAT FETAL ALCOHOL SYNDROME IS AND WHAT IT IS NOT

Terminology

     Fetal alcohol syndrome (FAS) was first defined as a medical syndrome in 1973 by researchers at the University of Washington in Seattle (Jones & Smith, 1973; Aase, 1981; Little, Asker, Sampson, & Renwick, 1986).  A syndrome is a constellation of features related to a common etiology, in this case prenatal alcohol exposure.  All of the following items are required for the diagnosis of FAS (Astley & Clarren, 1997):

1.    Confirmation of maternal alcohol exposure

2.    Evidence of a characteristic pattern of facial anomalies

3.    Evidence of growth retardation

4.    Evidence of central nervous system (CNS) dysfunction

     Other diagnostic categories addressing the existence of alcohol-related CNS damage occur in the absence of either facial abnormalities or marked growth deficiencies (Astley & Clarren, 1997; Stratton et al., 1996):

1.    Partial FAS with confirmed maternal alcohol exposure

2.    Atypical FAS

3.    FAS without confirmed maternal alcohol exposure

4.    Alcohol-related birth defects (ARBD), or Sentinel physical findings (a combination of key physical findings highly sensitive and specific to in utero alcohol exposure).

5.    Fetal alcohol related conditions (FARC), including

a)    Alcohol-related neurodevelopmental disorder (ARND)

b)   Static encephalopathy (any unchanging physical abnormality in the brain)

c)    Neurobehavioral disorder

     It is in the fifth category (FARC) that the majority of clients affected by prenatal alcohol exposure are likely to fall.  Alcohol-related neurodevelopmental disorder (ARND) may be defined as follows:

A history of maternal alcohol exposure, along with CNS abnormalities characteristic of FAS, and/or evidence of a complex pattern of behavior or cognitive abnormalities that are inconsistent with developmental level and cannot be explained by familial background or environment alone, such as learning difficulties, deficits in school performance, poor impulse control, problems in social perception, deficits in higher level receptive and expressive language, poor capacity for abstraction or metacognition, specific deficits in mathematical skills, or problems in memory, attention, or judgment (Stratton et al., 1996, p. 5).

     This category is similar to static encephalopathy (Astley & Clarren, 1997, p. 16), fetal alcohol-related conditions (FARC), or the previously used term, fetal alcohol effects (FAE).

Diagnosis

     Diagnosis is made by an expert trained in the assessment of birth defects.  This can include specially trained physicians such as dysmorphologists, geneticists, pediatricians, neurologists, and obstetricians-gynecologists.  Diagnosis should not be made by nurses, psychologists, teachers, vocational or school counselors, or physicians who do not have the training and experience required, because the diagnosis must differentiate between FAS and certain genetic disorders that look similar to it, such as Fragile-X syndrome, Aarskog syndrome, Noonan syndrome, and Fetal Hydantoin Syndrome (Astley & Clarren, 1997, p. 2). 

For many people, a diagnosis of FAS stigmatizes the birth mother.  Therefore, diagnosis is a serious matter, and should be made by a team including, but not limited to, the dysmorphologist, an educational expert, a family or community advocate, a psychologist, a social worker, an occupational therapist, a speech and language expert, a public health nurse, and a VR counselor, if the client or student is an adolescent or adult.  Each member of the team contributes significant input and, after diagnosis, serves as an advocate, support, and educational resource for the family.  This is particularly important when it comes time for implementation of an individualized service, education, or employment plan.

This team model has been designed and implemented through the University of Washington in Seattle by Dr. Sterling Clarren and Dr. Susan Astley.  This team approach is the center of a network of similar clinics being operated around the state of Washington and the United States (Clarren & Astley, 1997).  This model is particularly helpful in that it accesses and utilizes resources currently in place in each community.  It can also be an excellent guide for identifying where there are service gaps and providing information to community leaders about the best possible method to plug these gaps.

Diagnosis is based on an assessment of the factors outlined above (Astley & Clarren, 1997).  In the Astley and Clarren system, each factor is ranked on a 4-point Likert scale and placed on a four-by-four grid.  The rank of each area is determined in conjunction with a diagnostic team and standard scores for each area.  For example, growth is based on height and weight.  Genetic factors, such as parental height, should be considered when determining if a client is truly growth deficient.  Weight is adjusted for gender and age and then, based on the standard scores, a number is assigned and placed into the grid.  Weight is assessed over the life span of the client.  The lower the overall pattern of weight, the higher the score on the grid, e.g., a client who was below the 5th percentile at birth and remains growth deficient would receive a score of 4 on the grid.

Facial abnormalities are assessed through measurements and comparison of the philtrum/upper lip area to a standardized chart.  The length of the eye slit (palpebral fissure) and the distance between the eyes is measured.  The smaller the eyes and the greater the distance between the eyes, the higher the score for the eye measurement.  However, some ethnic groups may have different population standards for palpebral fissures (Stratton et al., 1996, p. 72), and the standards for American Indians and Alaska Natives are not well known.  The eye measurement is figured in with the level of abnormality of the philtrum/upper lip area and assigned a score.  This score is placed on the grid. Epicanthal folds are another facial feature that used to be considered characteristic of FAS, but this feature occurs naturally without FAS in American Indians and Alaska Natives, so its utility as a diagnostic feature has been questioned (Abel, 1998, pp. 77-78).

Evidence of brain (CNS) damage can include lower IQ scores, a small head (microcephaly), or testing results.  IQ scores lower than 60, abnormalities on a brain scan or other objective tests, or a persistent pattern of neurologic findings, such as microcephaly or a diagnosed seizure disorder, would rate the client a score of 4 on brain damage.

To obtain a 4 on the grid for alcohol exposure, the client’s mother or another reliable informant must confirm maternal prenatal use and report exposure that would produce a blood alcohol concentration greater than 100 mg% weekly, early in the pregnancy (Astley & Clarren, 1997).  Lower frequency and amounts would result in a lower score on the grid.  A rank of 2 means alcohol exposure unknown, and a rank of 1 means confirmed absence of gestational alcohol exposure.

Fours or threes in all of the above categories are required to receive a diagnosis of FAS.  There are 256 different diagnostic codes based on this grid system.  To be considered for a diagnosis of ARND, there must be evidence of both alcohol exposure and brain damage, e.g. through behavior or testing scores.  As other developmental disabilities, personality disorders, and psychiatric disorders can also produce signs of brain damage, ARND cannot be considered a possibility without confirmed prenatal alcohol exposure.

In addition to the four factors outlined above, pre and postnatal trauma other than exposure to alcohol must be taken into account.  For example, if a client has been sexually abused, this must be taken as a possible factor in rating the amount and type of CNS damage.  If the mother was in a serious car accident prior to the client’s birth, this must be taken into account in assessing the physical findings and brain damage.  There are many of these factors, some of which will become clear in reading the case studies included in this manual.  The Astley-Clarren grid can also be used as a screening and referral tool (see the section on Assessment for more information on this process).

Does It Help to Obtain a Diagnostic Examination?

Streissguth (1994) suggests that a diagnostic examination answers several important questions for a family, and often for the person with FAS/ARND as well:

  1. Understanding the cause of an adolescent’s disability is usually a tremendous relief for the parents, whose child-rearing techniques were often blamed (perhaps incorrectly) for the adolescent’s problems. As Julie Gelo (1996) put it, the diagnosis of her children with FAS helped her realize that “I’m not crazy.” She added, “I was not the only parent who felt like they were beating their head against the wall – why weren’t the parenting tactics working with these children when they had worked just fine with our other children?”
  2. Understanding that an adolescent’s developmental disabilities have a biological origin can help a family sort out their expectations and develop a reasonable plan of action for the adolescent.
  3. The diagnosis can be very helpful to the person with FAS/ARND, who has often wondered why they were not like everyone else, or why they were having such a hard time meeting expectations.
  4. With a diagnosis, “Service doors crack open… When our children received their diagnosis, it opened many doors for additional funding and services that they would not have qualified for otherwise” (Gelo, 1996). The diagnosis can be particularly important in qualifying for developmental disabilities services.
  5. Although a diagnosis of FAS/ARND is not, by itself, sufficient to qualify an adolescent for special education, according to Gelo the diagnosis and accompanying recommendations “have enabled us to get the children an Individualized Education Plan at their schools. It has helped us work with educators as a team for the best interest of each individual child.”
  6. A diagnosis maybe “very useful in setting up necessary medical management” for persons with FAS/ARND (Gelo, 1996), from medication management to referrals for additional services such as speech therapy. Speech therapy can include services for expressive language disorders, auditory processing difficulties, etc.

“In short,” Streissguth concludes, “understanding the cause helps everyone work toward effective interventions”(p. 73). Of course, in American Indian and Alaska Native communities, the “family” may be an extended family, including clan relatives. Diane Malbin has said that a diagnosis can help the person with FAS/ARND shift awareness from thinking that “I am the problem” to an awareness that “I have a problem.” She then added,

After all, children with FAS, like the rest of us, have the need to make sense of their own behavior. In the absence of a diagnosis, well-meant interventions and therapies can be horribly inappropriate. (Streissguth & Kanter, 1997, p. 205)

As a practical matter, however, Streissguth, et al. (1996) have shown that an early diagnosis of FAS/ARND is one of the most powerful factors associated with the lack of secondary “disabilities” (behavioral problems) later in life (pp. 25-28).

Embryology

Birth defects associated with FAS can vary, depending on when during gestation the fetus is exposed and how long the exposure continues.

Coles, 1994, p. 22

The auditory, vestibular, ocular, CNS, and craniofacial systems are tied together embryologically, anatomically, and functionally.  Congenital anomalies in one system are generally associated with anomalies in the other systems (Church & Kaltenbach, 1997).  Alcohol is a powerful teratogenic (birth defect causing) drug.  Organs form during the first 6 to 12 weeks after implantation of an embryo, so that exposure to any teratogen (such as alcohol) during that time can lead to gross structural malformations and other alcohol-related birth defects (ARBD), including the facial features characteristic of FAS.  Brain development occurs throughout gestation and past birth (Figure 1).  At any point during gestation, after implantation has occurred, the brain can be adversely affected by maternal alcohol consumption.  Embryonic cells can be killed by maternally consumed alcohol, and neuronal cell populations may be particularly vulnerable.  The brain damage associated with prenatal alcohol exposure is often due to the disruption of brain cell migration as the brain develops.  Gross brain structures may be significantly reduced in size, resulting in microcephaly or the reduction in size of specific parts of the brain.  Alcohol can impair development of the corpus callosum, the band of connecting tissue between the right and left hemispheres.  Ocular and auditory defects are also common.  In fact, the presence of a congenital eye anomaly is usually thought to indicate the presence of an inner ear anomaly (Church & Kaltenbach, 1997).  For these reasons, hearing and visual impairments are common in people with FAS.  The face is also developing at this time, so that daily consumption or heavy binge drinking can impact fetal development, resulting in the classic face seen in FAS and used as part of the diagnostic criteria on the Astley-Clarren grid (see Section III).

<Insert Figure 1 about here, from Coles 1994, p. 23>

Following the stage of organogenesis, toxic exposure to teratogens, instead of producing gross structural malformations, produces histological changes in tissues, inhibits growth, and produces subtle changes in the developing CNS (often manifested as neurobehavioral effects) by interfering with histogenesis, synaptogenesis, neuronal differentiation and migration, the formation of myelin, and so forth (Stratton et al., 1996, p. 39).  These two forms of brain damage (structural malformations and cell-level damage) are the source of the many disabilities associated with FAS and ARND (Streissguth, Clarren [I1]  , & Jones, 1985; Conry, 1990; Uecker & Nadell, 1996; Stratton et al., 1996) and are involved in the CNS dysfunction that is part of the definition of FAS and ARND.

Most fetal growth occurs in the third trimester.  Alcohol consumed in the last trimester can lead to decreased fetal growth, brain damage, or more subtle physical problems.  No amount of alcohol has been determined to be safe, and after implantation has occurred, no time during pregnancy is free from risk if alcohol is used by pregnant women.


II.  PRIMARY AND SECONDARY DISABILITIES ASSOCIATED WITH FAS AND ARND

Terminology

Brain damage caused by prenatal alcohol exposure cannot be cured, nor can the brain cells killed by alcohol be replaced.  The effects of the brain damage can be reduced, and to some extent the brain can be rebuilt by constant repetition to develop new links between cells (synaptogenesis).  However, the extent of brain repair in individuals with FAS/ARND has not been adequately studied.  Current experience indicates that even with early intervention, brain damage and its associated behaviors are likely to persist across the life span.

This primary condition (brain damage) affects the individual’s ability to function.  The extent of these effects is determined by how much and when the mother drank during her pregnancy, and by individual characteristics.  Associated with this primary condition, there may be comorbidity or co-occurring health conditions, as well as secondary conditions.  For example, attention deficit hyperactivity disorder (ADHD) is often associated with FAS.  It is a distinct disability that may co-occur with FAS but is not necessarily caused by FAS.

Primary Disability

The VR system generally defines primary disability as the one that has the most functional limitations in terms of employment outcome. This means that the primary disability is relative to employment outcome and the person’s previous work history. The primary disability is not necessarily the most severe disability, although it usually is.

 A primary disability may also be thought of as a disability that one is born with (Streissguth, 1997).  In the case of FAS, the primary disability results from brain damage and, as such, cannot be cured.  FAS is generally considered a medical condition and is not recognized per se as a disability.  However, FAS may result in one or more recognized disabilities, such as mental retardation, or learning disability.  But the word “primary” is relative:  Medical people tend to understand primary as referring to the cause (e.g., prenatal alcohol exposure), whereas professionals in VR are more likely to understand primary as referring to the most functionally limiting in terms of employment outcome (e.g., attention deficit disorder).

Disabilities Commonly Associated with FAS/ARND

Although FAS/ARND has been associated with many disabilities, quantitative studies of comorbidity are few. FAS and ARND are usually associated with at least one other disability. Having one disorder does not rule out the possibility of another.  In the experience of the authors, and by many anecdotal reports available, multiple diagnoses appear to be the norm rather than the exception.  In our research, we found an average of about 4 disabilities per American Indian/Alaska Native with FAS or ARND [RMS2]  . In our data, the most common disabilities associated with FAS or ARND were mental retardation, attention deficit hyperactivity disorder, depression (various types), learning disorders, and developmental delay: language deficits. [RMS3]    A study of 145 FAS/ARND cases in Alaska (Colberg, 1997) showed that 41% of the cases had speech or language delay, 35% had fine or gross motor delay, 28% had short attention span or attention deficit disorder (ADD), and 20% had learning disability or mental retardation.  Most of these 145 cases (83%) were Alaska Natives.  Multiple disabilities were common.  In another study in Alaska of 36 children with FAS, 34% had a speech impairment, 20% had mental retardation, 20% had learning disabilities, 14% had “pre-school disabilities” (developmental delays), 6% had serious emotional disturbance, and 6% had multiple disabilities (Gessner, Bischoff, Perham-Hester, Chandler, & Middaugh, 1998).  The critical thing to ask is this: are these really independent disorders, each with its own unique organic cause and its own unique treatment strategy, or are they linked by a common etiology (fetal exposure to alcohol) requiring a comprehensive integrated treatment strategy? If the latter, does a comprehensive, integrated rehabilitation plan make more sense than a piecemeal approach that treats each disability separately? While FASD is not necessarily a causal agent in the disorders listed, it can change the clinical presentation and articulation of symptoms by the patient.

 

Learning Disabilities (NEW)

The term “learning disability” was apparently first used and defined by Kirk (1962, cited in Streissguth, Bookstein, Sampson, & Barr, 1993, p.144). The term referred to a discrepancy between a child's apparent capacity to learn and his or her level of achievement. A review of the LD classifications for 49 of 50 states revealed that 28 of the states included IQ/Achievement discrepancy criteria in their LD guidelines (Ibid., citing Frankenberger & Harper, 1987). However, the National Joint Committee for Learning Disabilities (NJCLD)(1981; 1985) preferred a slightly different definition:

‘Learning disabilities' is a generic term that refers to a heterogeneous group of disorders manifested by significant difficulties in the acquisition and use of listening, speaking, reading, writing, reasoning or mathematical abilities. These disorders are intrinsic to the individual and presumed to be due to central nervous system dysfunction. Even though a learning disability may occur concomitantly with other handicapping conditions (e.g., sensory impairment, mental retardation, social and emotional disturbance) or environmental influences (e.g., cultural differences, insufficient/inappropriate instruction, psychogenic factors), it is not the direct result of those conditions or influences. (as cited in Streissguth et al., 1993; see also NJCLD, 1985).

Thus there are two different views of LD: one that defines it in terms of a difference between IQ and achievement, and another that defines it as being below normal on both indices. A more recent definition of LD, by the Interagency Committee on Learning Disabilities (ICLD) (1989), does not mention IQ as a defining characteristic:

Learning disabilities is a generic term that refers to a heterogeneous group of disorders manifested by significant difficulties in the acquisition and use of listening, speaking, reading, writing, reasoning, or mathematical abilities, or of social skills. These disorders are intrinsic to the individual and presumed to be due to central nervous system dysfunction. Even though a learning disability may occur concomitantly with other handicapping conditions (e.g., sensory impairment, mental retardation, social and emotional disturbance), with socioenvironmental influences (e.g., cultural differences, insufficient or inappropriate instruction, psychogenic factors) and especially attention deficit disorder, all of which may cause learning problems, a learning disability is not the direct result of those conditions or influences.

 

The DSM-IV uses the term “Learning Disorder ( formerly Academic Skills Disorders)”, that seems to follow the NJCLD definition:

Learning Disorders are diagnosed when the individual's achievement on individually administered, standardized tests in reading, mathematics, or written expression is substantially below that expected for age, schooling, and level of intelligence. The learning problems significantly interfere with academic achievement or activities of daily living that require reading, mathematical, or writing skills. A variety of statistical approaches can be used to establish that a discrepancy is significant. Substantially below is usually defined as a discrepancy of more than 2 standard deviations between achievement and IQ. A smaller discrepancy between achievement and IQ (i.e., between 1 and 2 standard deviations) is sometimes used, especially in cases where an individual's performance on an IQ test may have been compromised by an associated disorder in cognitive processing, a comorbid mental disorder or a general medical condition, or the individual's ethnic or cultural background. If a sensory deficit is present, the learning difficulties must be in excess of those usually associated with the deficit. Learning Disorders may persist into adulthood.

Demoralization, low self-esteem, and deficits in social skills may be associated with Learning Disorders…Adults with Learning Disorders may have significant difficulties with employment or social adjustment. Many individuals (10%-25%) with Conduct Disorder, Oppositional Defiant Disorder, Attention-Deficit/Hyperactivity Disorder, Major Depressive Disorder, or Dysthymic Disorder also have Learning Disorders…

There may be underlying abnormalities in cognitive processing (e.g., deficits in visual perception, linguistic processes, attention or memory, or a combination of these) that often precede or are associated with Learning Disorders. Standardized tests to measure these processes are generally less reliable and valid than other psychoeducational tests…Learning Disorders are…frequently found in association with a variety of general medical conditions (e.g., lead poisoning, fetal alcohol syndrome , or fragile X syndrome.) (DSM-IV pp.46-47, emphasis added in last sentence.)

This approach to learning disabilities resulted in the definition of the following Learning Disorders:

The last category might include problems in all three areas that together significantly interfere with academic achievement even though tests measuring each individual skill is not substantially below that expected given the person's chronological age, measured intelligence, and age-appropriate education (DSM-IV, p.53).

Sometimes cultural or ethnic differences in learning patterns can be mistaken for a learning disorder, but the DSM-IV definition of learning disorders excludes this possibility:

Learning Disorders must be differentiated from normal variations in academic attainment and from scholastic difficulties due to lack of opportunity, poor teaching, or cultural factors. (p. 47, emphasis in original.)

A culturally competent diagnostician will not diagnose a learning disorder on this basis (pp 47-48). All of these factors must be taken into account when making a diagnosis or providing treatment.

IDEA Definition

One other definition of importance is provided in the Individuals with Disabilities Education Act (IDEA). The federal government defines learning disabilities in Public Law 94-142, as amended by Public Law 101-76 (IDEA):

Specific learning disability means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, which may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations. The term includes such conditions as perceptual handicaps, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not include children who have problems that are primarily the result of visual, hearing, or motor disabilities, or mental retardation, emotional disturbance, or of environmental, cultural, or economic disadvantage.

This definition resembles the ICLD definition given above in that it does not refer to a discrepancy between IQ and achievement. Thus, the differences in the 1980s definitions of the NJCLD and ICLD are perpetuated in the differences between the DSM-IV and IDEA of the 1990s, and these differences are also perpetuated among the states. According to Jean Lokerson (1992, p. 99),  

Although the definition in federal law governs the identification of and services to children with learning disabilities (LD), there are variations between states and among school systems. In an attempt to clarify the identification, some states specify an intelligence range. Others add a concept of a discrepancy between potential and achievement, sometimes quantifying the discrepancy using test scores. These slightly different "yardsticks" are indicative of a lack of clear consensus about exactly what learning disabilities are.

Streissguth, et al. (1993, 145, 147-152) were able to show that prenatal exposure to alcohol statistically predicts the NJCLD type of LD that has evolved into the DSM-IV definition, but not Kirk's type of LD, which has evolved into the IDEA definition. According to Johnson (1999, p.22), other more anecdotal sources seem to distinguish the learning problems associated with FAS/ARND from those associated with LD (Burgess & Streissguth, 1992; Kleinfeld, 1993; Morse 1993), “presumably on the basis of the differing neurological etiologies of the learning problems.” Johnson (1999, pp.23f.) has developed a parallel list of learning problems in children with FAS/FAE and children with Learning Disabilities, shown below as Table 1. In general, the learning problems of children with FAS/ARND may be more intractable than in students with learning disabilities (shown in table by “*”). Differences in the table are highlighted in italics. The point here is that LD with FAS/ARND is not necessarily the same as LD without FAS/ARND, and that treatment strategies that work with the latter may not work as well with the former.



Table 1.

Learning Problems in Children with FAS/FAE, and with Learning Disabilities

Children with FAS/FAE

Children with LD

IQ range 20-130

IQ range same as normal population

*Slow development of early language, including articulation

May have slow development of early language, including articulation

*Problems with sound/symbol relationships & phonological awareness

Problems with sound/symbol relationships & phonological awareness

*Problems with storage and retrieval of information

Problems with storage and retrieval of linguistic information

*Slow to process language

May be slow to process language

*Problems with spelling, reading, writing, and math

Problems with spelling, reading, writing, and sometimes math

*Difficulty with abstract relationships

May have difficulty with abstract relationships

*May be able to decode but struggle with comprehension

May be able to decode but struggle with comprehension

*Poor cognitive processing, especially executive and strategic processes

May have poor cognitive processing

(Not known)

May have reversals in reading and writing

*Impulsive; lack of awareness of consequences

May be impulsive; may show lack of awareness of consequences

*Problems organizing ideas, things, time

Problems organizing ideas, things, time

*Poor short and/or long term memory

Poor short and/or long term memory

*Poor sequencing, especially instructions

Poor sequencing, especially instructions

*Problems generalizing from one activity or situation to another

Problems generalizing from one activity or situation to another

*Transitions between activities are often difficult, and may cause child to withdraw or be disruptive

Transitions between activities may be difficult