The Limits of Labels: Evaluation Results That Really Matter
By: Nicole Beurkens, M.Ed.
When a child is not developing as expected, the first thing most parents and professionals attempt to do is figure out a name for what is going on. The assessment or evaluation process is often viewed as the path to determine an appropriate diagnosis or label for individuals. Disability labels become the gatekeepers for services and supports in schools and the broader community. Parents and professionals therefore become very invested in the name that is given to a child’s condition, both to understand more about the child and to secure treatment. This is a completely normal reaction for parents, as they want what is best for their children and must seek it in a system that provides or denies support based on their child’s label.
It is important to recognize the two very different systems of labeling or classifying individuals. In the medical realm, with which most parents are accustomed, tests and procedures are conducted in order to provide a medical diagnosis for a condition. The treatment that follows is based on the presence of the particular condition that was diagnosed. In the realm of psychological evaluation, however, the scenario is quite different and unfamiliar to most parents. The purpose of these evaluations is to determine how an individual is functioning, and whether or not their particular patterns of skills and behaviors meet the criteria for disorders in the realms of thinking, behavior, and emotions. This type of evaluation process is often less precise than medical testing and diagnosis, and is typically not directly linked to treatment.
What often gets missed in the process of categorizing an individual’s conditions is that labels can only begin to describe the complex mix of strengths, obstacles, personality traits, thoughts, behaviors, and emotions within that individual. Labels, or diagnostic categories, are the method used to characterize general subgroups of people with certain types of symptoms. They are open to a significant amount of subjective interpretation, and cannot capture the entire essence of any individual. It is not uncommon for an individual to receive one specific diagnosis from practitioner A, a different diagnosis from practitioner B, etc. This can be extremely frustrating and confusing for parents and professionals, and may lead them to wonder why we would even label people in the first place.
Diagnostic labels tend to be the outcomes of evaluations conducted to determine how an individual is functioning. The label, or lack thereof, is often viewed as the important part of the evaluation. I propose, however, that the label is one of the least important elements of the process. What is important is that the information gathered throughout the evaluation process leads to a greater understanding of the individual and how s/he functions in the world, which then can guide the development of appropriate recommendations for improved functioning.
When parents or professionals contact our office regarding services, one of the first questions they tend to ask is whether the individual must have a certain diagnosis or label in order to received services. Their experience has taught them that labels are required for treatment. This is simply not the case, particularly when we are dealing with neurodevelopmental diagnoses such as autism spectrum disorders, learning disabilities, bipolar disorder, etc. While those labels may provide some insight into symptoms, they do not tell us much about how the individual experiences the world and functions within it. I am far more interested in exploring what the evaluation results mean in terms of strengths, obstacles/challenges, and functioning across a variety of settings and tasks. This information allows us to get a picture of the individual’s needs in order to design effective treatment strategies. I have yet to meet two individuals with any disorder who are exactly the same! Labels let us know that there are some similar surface symptoms, but they do nothing to tell us how each is functioning, the needs that should be prioritized, or the types of approaches that are most likely to best support functioning. Along the same lines, individuals who do not receive any label at the conclusion of an evaluation may have significant obstacles impacting their functioning, but do not fit into one of the diagnostic categories used by clinicians. The presence or absence of a diagnostic label does not indicate the presence or absence of obstacles that should be addressed.
If a label, or lack thereof, is not the most important result of an evaluation, then what is? Here are what I deem to be the most important outcomes of a thorough evaluation:
- What are the individual’s strengths?
I want to know what kinds of things the individual is good at and excels in doing. Every human being has areas of strength, either in comparison to others or in comparison to their weaker areas. A thorough assessment should uncover those strengths and lead to recommendations for using those strengths to improve functioning.
- What are the individual’s obstacles?
We must understand the tasks and environments with which the individual has more difficulty if we are to design appropriate treatment. I prefer the term obstacle to weakness, for an obstacle is something that can be overcome while a weakness implies a flaw in the individual. Appropriate evaluation determines that things that are preventing an individual from functioning optimally.
- What has this individual’s life been like thus far—what is the history?
We can conduct evaluations without investigating this background information, but interpretation of the results cannot take place without understanding the context of the individual’s life history. A thorough assessment involves gathering information from the individual as well as family members, friends, and relevant professionals to develop a context in which to understand test results.
- What is the status of the environment(s) in which the individual currently functions?
Humans do not live on islands unto themselves—there are people and environments with which they interact on a daily basis. It is necessary to understand the context in which an individual lives, goes to school, works, etc. in order to fully understand test scores and assessment outcomes. There are often elements of the family system, school system, social service system, etc. that require attention just as much as the individual’s specific obstacles. A meaningful evaluation identifies elements in the context of the individual’s life that are supporting and detracting from the individual’s ability to function optimally.
It is crucial for parents and professionals to understand that whether or not an evaluation provides a specific label is far less important than whether it provides detailed information about an individual’s functioning. If the goal of evaluation is to better understand the individual and determine appropriate courses of treatment or support, then the label becomes the least important outcome. Leaving an evaluation with a name for your child’s symptoms is much less helpful than leaving with a thorough understanding of strengths and obstacles in current and historical context. That information is what allows you to move forward and seek appropriate treatment for your child’s specific obstacles, rather than seeking treatment based on labels.