CHAPTER 6: Classification Versus Labeling

Author: Susan Vig

Author: Susan Vig

Rose F. Kennedy Center Albert Einstein College of Medicine in Developmental Disabilities Education, Research, and Service 1410 Pelham Parkway South Yeshiva University Bronx, NY 10461

Psychologist, Ph.D

ITAC- Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities

Agreement…

There is value in understanding the nature of different kinds of disabilities and identifying disabilities so that beneficial interventions and services may be provided

Disagreement

The process by which we classify and label individuals in our pursuit to provide effective treatments

Classification

Classification

A process that separates individuals into groups that share common characteristics

SO….

If an individual is a member of a particular class or category, what is known about the class designation will give information about that individual

What information could we get from an individual member of this class?

Purpose of classification

To determine eligibility for services and entitlements; to make diagnoses; to plan, implement, and evaluate intervention services; and to conduct research

Classification to Determine Eligibility for Services

The Individuals with Disabilities Education Act (IDEA, PL 101-476) specifies those disabilities that entitle children to special education and related services ■Autism ■Deaf-blindness ■Deafness ■Developmental delay ■Emotional disturbance ■Hearing impairment ■Intellectual disability ■Multiple disabilities ■Orthopedic impairment ■Other health impairment ■Specific learning disability ■Speech or language impairment ■Traumatic brain injury ■Visual impairment, including blindness

“Autism” eligibility category

…means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engaging in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term autism does not apply if the child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in #5 below.

A child who shows the characteristics of autism after age 3 could be diagnosed as having autism if the criteria above are satisfied.

This categorical approach results in “all in” or “all out” outcomes

Either a child does or does not have a particular disability

Conversely

A “dimensional“ approach groups individuals according to constructs or dimensions

Examples: Borderline personality disorder, mood disorder

This approach could allow inclusion of individuals with serious problems, but who do not meet full criteria for category membership

Classification by Etiology

The “what” Grouping individuals with disabilities

according to the causes of the disabilities

Classification by Etiology

The “why” Durkin and Stein (1996) suggest that

etiological classification is useful for planning primary prevention, understanding the nature of a disability, conducting epidemiological research and providing information to families

The scientific study of mental retardation is often based on etiological classification…

Organic Versus Familial Retardation

Zigler et al. (1986) propose 2 groups of individuals with mental retardation:

Organic etiology

Non-organic etiology

The “organic” etiology

IQ scores below 50 Physical stigmata Siblings with typical cognitive

development High prevalence of physical conditions

such as epilepsy or cerebral palsy

All socioeconomic classes represented

The “non-organic” etiology

The “familial” group IQ scores between 50 and 71 Typical physical appearance At least one family member with lower

intelligence or mental retardation Families are generally of lower socioeconomic

status

No demonstrable organic cause

Perspective: Recent years

Mental retardation is the result of complex, often interactive influences

May be an interaction of adverse biological, environmental, and behavioral influences on health and development

Etiology: Implications

Prevention

Intervention

Syndromes

Down Syndrome Genetic cause Generally identified at (or before) birth Good deal of knowledge regarding associated

medical problems, prognosis, and treatments that optimize development

Classification by etiology has proven beneficial in this case

Classification by Levels of Support

In 1992, the AAMR (American Association on Mental Retardation ) revised the definition of mental retardation

The new definition eliminated previous levels of measured intelligence and replaced it with an individuals level of need for intensive supports to function in daily life

What are the potential problems with this?

Operationally defining the definition Lack of reliable or valid measures for

determining support intensities Poor applicability of specified adaptive

skill areas to children Potential to confuse intensities of

supports with previously specified degrees of intellectual disability

The 2002 AAMR Definition

A “happy medium”

Classification may be based on intensities of supports, etiology, IQ ranges, levels of adaptive behavior, or other factors

Replaces the 10 adaptive skills areas with 3 more general areas Conceptual Social practical

Classification by Levels of Measured Intelligence

2002 AAMR definition permits classification by IQ severity levels Mild Moderate Severe Profound

Each level of severity is associated with different developmental trajectories, and different adult outcomes

This information assists with planning interventions

International Classification Systems

In an attempt to create increased international consistency, the World Health Organization developed two classification systems:

Classification of Mental and Behavioral Disorders: Diagnostic Criteria for Research (ICD-10)

International Classification of Functioning, Disability, and Health

International Classification Systems

ICD- 10 is conceptualized in terms of interaction between person and environment NOT as a fixed trait

Criticisms: this functional orientation is likely difficult when one considers differences between countries and cultures

Identification and Diagnosis

Identification and Diagnosis

Where classification emphasizes characteristics of groups…

Diagnosis focuses on characteristics of particular individuals…

Resulting in a label(s)

Early Identification and Diagnosis

There are legal mandates and funding incentives to identify children’s developmental problems prior to age 3

Early intervention renders preferred outcomes in school, home and community settings

Early Identification and Diagnosis

Some disabilities are evident from infancy

Other disabilities do not become evident until certain developmental milestones fail to be achieved

Many children with autism are now identified prior to age 3

Early Identification and Diagnosis

Benefits child outcomes

Benefits parent outcomes Decreased parental stress Improved family interactions

Diagnostic Guidelines

General use of diagnostic criteria DSM-IV (1994), DSM-IV-TR (2000) Subjective clinical judgement in deciding

whether or not the symptoms observed meet diagnostic criteria

Some criteria are not suited for very young children…

Diagnostic Guidelines

In an effort to establish and present more age appropriate guidelines, the National Center of Clinical Infant Programs developed the

Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood (birth-3)

Checklists and Screening Tools

The Checklist for Autism in Toddlers (CHAT; Baron-Cohen, Allen, & Gillberg, 1992)

The Childhood Autism Rating Scale (CARS; Schopler, Reicher & Renner, 1988)

The Pre-Linguistic Autism Diagnostic Observation Schedule (PL-ADOS; DiLavore, Lord & Rutter, 1995)

The Autism Diagnostic Interview- Revised (ADI-R; Rutter, Lord & LeCouteur, 1995)

The Communication and Symbolic Behavior Scales (CSBS; Wetherby & Prizant, 1993)

Labeling

The good

The bad

The ugly

Labels

The outcome of both diagnostic processes and classification for services (the educational system) often result in LABELS

Labels

Can be stigmatizing

Criticisms of the biases of IQ tests especially for minority groups, individuals of low socioeconomic status

Changing Labels?

Reluctance to use labels may result in a shift from one label perceived as less preferable to one that may be more socially acceptable

Data from the U.S. Department of Education (1999) indicate that children served as “learning disabled” increased 202% from 1994 to 1997; those served as “mentally retarded” decreased 38%

Changing Labels

Alternative terminology has been suggested for “mental retardation” including

General learning disorder Intellectual disability Cognitive-adaptive disability

The Effects of Labeling

A direct relationship between labeling and self concept has not been evidenced Some children experience improved self

esteem when they access appropriate services

But what about teacher perception and expectations?!?!

Effects of Labeling

Smith (1980) conducted a meta analysis of 47 studies and found full support for formation of expectations, partial support for the differential effects of labels on teacher behavior and student achievement, and little support for the effects of that process on student ability

Brophy (1983) reviewed the research on self fulfilling prophecy and concluded that teachers revise their expectations as they gain new information about their students

Sattler (2001) found that although teachers may form initial opinions and establish early expectations about their students, they revise their expectations based upon the students performance

BUT what about peer attitudes?!?!

Effects of Labeling

Studies found that labels had little impact on the attitudes of peers toward their classmates with disabilities

Some research supports a protective effect

Non-Labeling

There have been no benefits found to avoiding formal labels

Students had less favorable attitudes toward children with disabilities (mental retardation) who were not labeled

Non-labeling often results in a failure to provide appropriate services and poor outcomes

Permanence of Labels

“once labeled…always labeled”

Often it is the nature of the disability and not the label that renders life long obstacles

Our goals should focus on optimizing treatment opportunities rather than pursuit of a “cure”

Professionals’ Reluctance to Label

Some professionals may be reluctant to use the diagnostic labels, or discuss the nature of the disability May use vague terminology

Studies support that parent want to know the truth about their children’s disabilities

Benefits to Labeling

Professionals and families may formulate appropriate expectations

Access, plan and implement appropriate interventions

Support families in accessing resources, community groups, adovocacy

Conclusion

Although classification, diagnostics, and labeling will likely be a source of controversy for some time

It is essential that professionals and parent base their opinions on empirical data rather than personal ideology

Classification, diagnosis and labels can assist families in accessing appropriate supports and services

Questions, Comments, Thoughts

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