Helping children with learning disabilities toward a brighter adulthood

By Ruth L. Gottesman, EdD, and Mary S. Kelly, PhD

Learning disabilities that go undiagnosed and unaddressed in childhood can blight adult lives. Here's what you can do to help change the future for children with these disorders.

Steven, who grew up in a poor urban area, was never able to learn to read. He failed first grade, and left school after being held over three times in seventh grade. He spent most of his adolescent years on the streets, supporting himself by selling cocaine, crack, and marijuana. He soon became addicted to heroin, was arrested, and spent three years in prison. His prospects for employment are poor because he cannot read the easiest texts, nor can he fill out a simple job application form.

What happens to children with learning disabilities when they grow up? The three stories presented below demonstrate the typical problems of adults—yesterday's children—whose learning disabilities were not properly attended to when they were young.

John, Jose, and Steven attend the Adult Literacy Program (ALP) at the Albert Einstein College of Medicine in the Bronx, NY, where they were diagnosed as having learning disabilities.¹ In the past nine years, more than 800 adults have been evaluated at ALP, and many report histories similar to those of these three men.

Longitudinal studies consistently show that childhood learning disabilities continue into adulthood.^2-4 The lifelong effects of a learning disability appear to be far broader than persistent difficulties in reading, writing, and spelling. Learning disabilities have a profound effect on the attainment of a high school or college degree, employment options, interpersonal relationships, and emotional well-being. People with the most severe learning disabilities are likely to experience chronic unemployment, poor interpersonal relationships, and difficulty living independently.^4-6

Many learning-disabled adults did not know they had a disability when they were young, even though they had trouble reading, writing, spelling, or calculating from the very start of school. Most experienced problems in language, motor skills, or behavior well before they encountered difficulties in the classroom. And, most have suffered all their lives from the effects of their disability.

Their plight might have been alleviated—and their lives made very different—had their problems been identified and remediated when they were still young. Research indicates that early identification and early intervention make a significant difference in the lives of learning-disabled people.^7,8 That's especially true today, when federal legislation enables learning-disabled children to receive a variety of accommodations at school and when technology can provide effective instructional and compensatory support.⁹

While most pediatricians do not have the time or training to evaluate or manage learning disabilities themselves, they can still improve outcomes by helping to identify these problems at the earliest opportunity. With that in mind, this article discusses the definition and characteristics of learning disabilities, provides guidelines for assessing these disabilities in pediatric patients, and describes school and community resources for evaluation and treatment.

Although we are psychologists, not physicians, one of us has worked closely with pediatricians at the Children's Evaluation and Rehabilitation Center within the Department of Pediatrics at Albert Einstein College of Medicine for more than 30 years. The other has had extensive experience in hospital and clinical settings with pediatricians and other health-care professionals. The suggestions we offer cross disciplinary lines.

Definition and characteristics of learning disabilities

Approximately 10% to 15 % of children and adults have difficulties listening, speaking, reading, writing, spelling, or computing that are well beyond what would be expected based on that individual's general intellectual ability. For the purposes of obtaining appropriate educational services under federal and state laws, the National Joint Committee on Learning Disabilities, a panel of experts that represents the major national professional organizations in the field, states that the term "learning disabilities" 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

• intrinsic to the individual, presumed to be caused by central nervous system dysfunction, and sometimes occurring for a person's entire life (italics added)

• occurring, in some cases, concomitantly with other handicapping conditions (for example, sensory impairment, mental retardation, or serious emotional disturbance) or with extrinsic influences (such as cultural differences or insufficient or inappropriate instruction), but not resulting from those conditions or influences.¹⁰

The American Psychiatric Association's definition of "learning disorders" as described in DSM-IV is the one used most often by physicians and others in health-related fields. 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.¹¹ (The term "learning disorders," used by the medical profession as described in DSM-IV, and "learning disabilities," used by psychologists and educators as well as in federal and state education laws, both apply to the same condition in children and adults, and are used interchangeably in this article.)

Learning disabilities are thought to stem from a combination of genetic, constitutional, and neurodevelopmental factors. Adverse events during pregnancy, birth, and pre- and postnatal development, or other circumstances that lead to CNS dysfunction (lead poisoning, for example), may result in a learning disability. Numerous studies have shown that some families have a genetic predisposition to dyslexia, a reading disability characterized by difficulty associating letters and sounds.^12,13

Most children with learning disabilities experience mild to severe difficulties in language processing, visual and auditory processing, memory, motor coordination, or spatial and temporal orientation. The major problems in reading include difficulty decoding unfamiliar words, poor comprehension and retention, and a slow reading rate. Math difficulties may affect the ability to remember number facts and solve practical problems. Problems in writing include poor and labored handwriting, faulty spelling, and grammar and syntax errors.

Table 1 lists examples of symptoms of learning disabilities in each of the above areas. Not all individuals with learning disabilities have all of the characteristics described, and some people who do not have a learning disability have some of these deficits. In addition, some characteristics are age-appropriate at certain stages of development. If they persist, however, they may indicate a learning disability.

TABLE 1
Characteristics of learning disabilities

Pediatric assessment

Pediatricians may be the first professionals to suspect learning difficulties in a child. Moreover, they are often called upon to advise parents about child management and school-related issues, independent of teachers' advice or principals' judgment. More than any other specialist, the pediatrician has a working knowledge of family values and coping styles, and may have substantial input into a family's medical decisions.

Some pediatricians may wish to conduct an extensive evaluation for learning disabilities. Given the time constraints and pressures of a busy practice, however, most will not have the time to perform all the components of a complete assessment, and many do not have the expertise to do so. Nonetheless, we feel it is important to mention each component here, so that the reader can choose which ones best fit into his or her practice. The pediatric assessment described here focuses on guidelines for interviewing the parent, reviewing school functioning (if the patient is of school age), and assessing the child firsthand. The specific goals of this evaluation are:

• to determine if the child is at risk for or has a learning disability

• to observe and describe the characteristics of learning disabilities in the child

• to consider other causes for the child's learning difficulties, such as sensory impairment, mental retardation, environmental or emotional factors, or poor or inadequate schooling

• to determine if, and what kinds of, referrals are needed to further clarify the diagnosis or treat the child

• to develop a plan for helping the child and the family.¹⁴

Parent interview. Take a history, obtain information about the patient's functioning at home, and, if the child is attending school, determine how the family and child are reacting to and coping with the educational setting. Often, parents report that the child presents no problems at home or is a different person during vacations and holidays, away from the stresses of the academic environment.

Many children with learning disabilities, however, have problems not only in academic subjects but in behavior and social adjustment as well. Therefore, you may have to explore all three areas with the parents to appreciate the nature, extent, and possible cause of the disability. Table 2 presents examples of questions that are helpful in obtaining information about the child's behavior at school and at home.

TABLE 2
School and home functioning Sample questions

Take a birth history if you don't already know it. Risk factors for learning disabilities include possible pathologic entities that may occur during pregnancy, labor, or delivery, such as fetal distress, prematurity, small size for gestational age, and hypoxia.

Questions about the patient's developmental milestones and early school experience may reveal variations from normal development that can be precursors of school failure. A child with delayed language acquisition, for example, is at risk for a specific reading disability. Questions about a child's social development may provide the first clues to understanding a child with hyperactive or withdrawn behavior.

Ask parents about their own school history and level of academic achievement and about that of their other children and relatives (such as the child's grandparents, aunts, and uncles). A family history of school failure may suggest a genetic etiology. Often, parents are relieved to learn that they are not directly to blame, and are better able to manage and cope with their child's disability as a result.

Also inquire about the child's ability to attend to and complete tasks. Encourage parents to describe the child's strengths, weaknesses, and interests. Strengths must be used to enhance learning, and weaknesses should be supported.

School review. The child's teacher can be a valuable source of information. A teacher's report sometimes differs greatly from that of the parents, who may exaggerate a problem, have unrealistic expectations, not pay enough attention to their child's difficulties, or deny them altogether. On the other hand, similar input from parents and teachers serves to corroborate a diagnosis of a learning disability.

Information from the school can be gathered informally (with a phone call, for example), or through a formal, written report completed by the teacher. A sample report is shown below. Specifics about a child's functioning at school should include level of achievement in reading, writing, arithmetic, and other subjects. Of interest is the teacher's appraisal of the child's language comprehension and usage as well as fine and gross motor coordination compared with that of his peers. Teachers should be asked about the child's behavior. For example, is the child aggressive, hyperactive, disobedient, nervous, shy, impulsive, or distracted in the classroom? Behavior during recess and social interactions with peers should also be investigated.

Once you have obtained information from both the parent and teacher, you will be in a better position to determine if the child has a serious learning problem. You can also judge whether the parent's and the school's expectations for the child are realistic.

Patient assessment. A direct assessment of the child involves both a physical exam and a personal interview. Evaluate the child's physical health first. Search for sensory impairments, underlying medical problems, or physical factors that could be causing the disability—although the actual yield of positive findings will be low. If you want to do a more extensive evaluation, also assess the child's emotional status, academic achievement, and underlying skills and abilities.

An interview with the child can reveal much about what he or she is actually experiencing in school, such as perceptions about teachers, peers, and homework. Table 3 lists sample interview questions. Often, children report traumatic or embarrassing experiences or insults from peers that color their attitudes about school, their capabilities, and their achievements. Sometimes the interview reveals a child's unrealistic expectations or fears, immature or inappropriate behavior, faulty judgment, and the impact of school failure on the child's sense of self and ability to relate to others.

TABLE 3
Questions to ask the child

It is essential to observe the child's behavior during the interview. Difficulty concentrating and paying attention, distractibility, and fidgetiness are the most common behaviors associated with learning disabilities.

A screening tool may also be helpful to your assessment. The Einstein Evaluation of School Related Skills is a relatively brief instrument designed to identify children at risk for or experiencing learning difficulties.^15,16 Appropriate for children in kindergarten through grade 5, the Einstein Evaluation measures reading, arithmetic, auditory memory, language-cognition, and visual motor functioning. It takes seven to 10 minutes to administer and can be given by a pediatrician or trained educator, or, with a little practice, by a nurse or pediatric aide.

The Einstein Evaluation* has been shown to be effective in helping to formulate initial hypotheses about the learning problems experienced by students referred to pediatric clinics.¹⁷ If the screening tool reveals that a child has serious deficiencies in academic achievement, there is a strong possibility he has a learning disability. Conversely, if performance is uniformly at or above age level, failure in school is more likely related to motivational or attitudinal factors, or unrealistic expectations on the part of the family or school staff.

Differential diagnosis

When assessing the child, you'll consider a variety of conditions that may coexist with or mimic learning disabilities. They include:

• visual and hearing problems

• extensive absence from school resulting from social or health-related factors or frequent changes in schools

• extreme environmental deprivation and understimulation in the preschool years, leading to a lack of basic concepts and vocabulary

• attention deficit hyperactivity disorder

• borderline intelligence and extremely low intellectual functioning

• primary emotional disturbance.

If learning disabilities or other developmental problems are identified, referral to consultants, such as a psychologist, psychiatrist, or special educator, will often be necessary to confirm a diagnosis and develop a plan of action. Table 4 provides guidelines for the kinds of referrals needed.

TABLE 4
Referral and treatment options

The pediatrician continues to be an important resource in the child's management once a learning disability is diagnosed. Address family concerns as they arise. Request copies of all evaluations so you can stay informed, and periodically monitor the child's progress to be sure that the proper interventions are occurring.

Sources of assistance

Pediatricians can inform the parents of learning-disabled children about valuable services offered by school districts and other organizations in their community. The federal Education for All Handicapped Children Act of 1975—renamed the Individuals with Disabilities Education Act in 1997—mandates that all public schools assess and educate children with learning and other developmental disabilities. The law makes schools accountable for providing appropriate educational and related services and ensures that parents are included in the decision-making process. If parents feel that their child is not receiving an appropriate education, they have the legal right to challenge the school and receive an impartial hearing.

Other, more recent federal legislation has enabled students with documented learning disabilities to receive modifications—auxiliary aids such as calculators and spellers—and accommodations, such as extra time on tests.

All school districts have a Committee on Special Education to which both parents and pediatricians can refer a child for psychological, educational, and other related evaluations by a multidisciplinary team. That team includes a school psychologist, classroom teacher, special educator, social worker, and speech and language specialist.

A variety of community agencies and private specialists also offer services to children with learning disabilities. Three national organizations, the National Center for Learning Disabilities (NCLD), the Learning Disabilities Association (LDA), and the International Dyslexia Association (IDA), provide information about learning disabilities and diagnostic and treatment services in communities across the country (see Table 5).

TABLE 5
Information and referral resources

Parents who need help navigating the school system bureaucracy and obtaining appropriate services may wish to turn to an education lawyer or, when that's not an option, an advocacy agency. Advocates are trained professionals or volunteers who work with parents to help them understand their due process rights and assist them when they disagree with the school's findings. NCLD, LDA, and IDA can help parents locate advocates in their area.

Assistive technology

Technological advances have made it easier for students with learning disabilities to master the school curriculum. The potential benefits of these technologies lie in their ability to either remediate specific skill deficits—like reading, spelling, writing, and math—or to help individuals circumvent particular learning difficulties. In reading, well-designed and theoretically sound software now extends and supports the efforts of teachers in many schools and clinical settings. For example, new programs on the market can convert text on the computer screen to speech. Software programs can read aloud text from printed documents like books and magazines, or from computer documents such as word-processor text, electronic mail, or Web pages.

Success stories

With our increasing knowledge of the outcomes of untreated or misdiagnosed learning disabilities, the importance of early identification and intervention in helping a child reach his or her potential becomes evident. The following stories illustrate this point.

In his early school years, Alonzo, now a 22-year-old college student, had trouble reading and was always behind in his work. He disliked reading, did not take tests seriously, and could not focus. When Alonzo was 8 years old, his mother brought him to a pediatric clinic for developmental disabilities, where he was diagnosed as having a specific reading disability. Small-group instruction to increase his reading comprehension, vocabulary, and test-taking skills was prescribed.

Gradually, schoolwork became easier and much more interesting for him, and his grades improved. He eventually enrolled in college. Originally pursuing a liberal arts program, he became very interested in mental health issues and, with encouragement from one of his professors, decided to major in psychology. Alonzo now plans to embark on a career in the school system, where he can help struggling students—as he once was helped—to overcome problems that could keep them from experiencing success and fulfillment.

When Jessica was in kindergarten, her pediatrician identified her as being at risk for learning disabilities. She was late in developing language and could not recognize any letters. Her teacher confirmed that Jessica was not progressing as well as most other children in the class. She was evaluated at a clinic specializing in developmental disabilities and found to have a reading disability. The school provided Jessica with extra help in reading and writing. In secondary school she received extra help only in subjects that were difficult for her. She learned to use the computer in high school and was able to write her assignments with a word-processing program. She also listened to recordings of textbooks and was able to take untimed examinations. She recently graduated from college as a fine arts major and now has a job in the education department of a local museum.

Pediatricians can make a substantial difference in the lives of children with learning disabilities, and in the lives of their families. Functioning as a clinician, family advisor, and patient advocate, you can help these children achieve their highest potential and avoid the hardships that many people with learning disabilities must cope with all their lives.

Parts of this manuscript are adapted from Cerullo F, Diamond D, Gottesman R: School failure, in Shelov S, Mezey A, Edelman C, Barnett H. (eds.): Primary Care Pediatrics, A Symptomatic Approach. East Norwalk, CT, Appleton-Century-Crofts, 1984, pp 347-364, with permission. The authors express their appreciation to Herbert J. Cohen, MD, and William L. Gottesman, MD, for their editorial suggestions during the preparation of this manuscript.

*The Einstein Evaluation is available from Slosson Educational Publications, PO Box 280, East Aurora, NY 14052. Orders: 888-756-7766; Fax: 800-655-3840

REFERENCES

1. Gottesman RL, Bennett RE, Nathan RG, Kelly MS: Inner-city adults with severe reading difficulties: A closer look. J Learning Disabilities 1996;29:570

2. Gottesman RL, Belmont I, Kaminer R: Admissions and follow-up status of reading disabled children referred to a medical clinic. J Learning Disabilities 1995;8(10):642

3. Gottesman RL: Follow-up of learning disabled children. Learning Disability Quarterly 1979;2(1):60

4. Raskind MH, Goldberg RJ, Higgins EL, et al: Patterns of change and predictors of success in individuals with learning disabilities: Results from a twenty-year longitudinal study. Learning Disabilities Research & Practice 1999;14:35

5. Gerber PJ, Reiff HB, Ginsberg R: Reframing the learning disabilities experience. J Learn Disabil 1996;29:98

6. Greenbaum B, Graham S, Scales W: Adults with learning disabilities: Occupational and social status after college. J Learn Disabil 1996;29:167

7. Snow C, Burns S, Griffin P (eds.): Preventing Reading Difficulties in Young Children. Washington, DC, National Research Council, National Academy Press, 1998

8. Maughan B: Annotation: Long-term outcomes of developmental reading problems. J Child Psychol Psychiatry 1995;36:357

9. Raskind MH: Assistive technology for individuals with learning disabilities. Perspectives 1998;24:20

10. Hammill DD: On defining learning disabilities: An emerging consensus. J Learn Disabil 1990;23(2):74

11. American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, ed 4. Washington, DC, American Psychiatric Association, 1994

12. Cardon LR, Smith SD, Fulker DW, et al: Quantitative trait locus for reading disability on chromosome 6. Science 1994;266:276

13. Smith SD, Kimberling WJ, Pennington BF, et al: Specific Reading Disability: Identification of an inherited form through linkage analysis. Science 1983;219:1345

14. Cerullo F, Diamond D, Gottesman R: School failure, in Shelov S, Mezey A, Edelman C, Barnett H (eds.): Primary Care Pediatrics, A Symptomatic Approach. East Norwalk, CT, Appleton-Century-Crofts, 1984, pp 347-364

15. Gottesman RL, Cerullo FM: The development and preliminary evaluation of a screening test to detect school learning problems. J Dev Behav Pediatr 1989;10(2):68

16. Gottesman RL, Cerullo FM: Einstein Evaluation of School-Related Skills. East Aurora, NY, Slosson Educational Publications, 1996

17. Gottesman RL, Cerullo FM: The validity of a screening test for school learning problems in a pediatric clinical setting. J Pediatr Psychol 1991;16:3

DR. GOTTESMAN is Director of the Fisher Landau Center for the Treatment of Learning Disabilities, Department of Pediatrics, Albert Einstein College of Medicine, Bronx, NY.

DR. KELLY is Associate Director of the Fisher Landau Center.

 

Ruth Gottesman. Helping children with learning disabilities toward a brighter adulthood. Contemporary Pediatrics 2000;11:42.