Education
Why We Need Diagnostic Labels to Treat Learning Disorders
The good, the bad, and the future of diagnostic labels.
Posted January 4, 2023 Reviewed by Vanessa Lancaster
Key points
- A learning disorder or disability can alter one’s sense of self and presentation in the world.
- Diagnostic labels aren’t good or bad, and can help when used correctly.
- We need better professional and public education regarding learning differences.
A learning disorder or disability can alter one’s sense of self and presentation in the world. Treating only one's academic skill problems without understanding how they are embedded in and affect a person’s sense of self is like trying to treat anxiety or depression without understanding their history and biology. Failing to identify or treat a learning disability effectively increases the potential for adverse outcomes and impairment across functional domains (Margolis & Broitman, 2023).
However, herein lies a complication: Identifying and treating involves using diagnostic labels, and misused labels are problematic. In practice, many students are inaccurately labeled. There is, for example, an over-representation of some minority groups and second language learners in special education. Additionally, since different U.S. states have different eligibility criteria, a student can be diagnosed with a learning disorder in one state and denied special services in another. What’s the solution?
Words Count
Labeling theory, developed in the 1960s by sociologists such as Howard Saul Becker in his book Outsiders, explores how your identity and behavior are influenced by the terms (labels) you use to describe or classify yourself. The theory stresses the importance of the impact of the words others use to describe you or your behaviors. Clearly, words count and can have a significant effect on how you feel, the way you are treated, and your potential for success.
Once children are labeled, it can affect not only the way they see themselves but also what is expected of them and how they are treated, as classmates, friends, or patients, which in turn influences who they become. Society needs to be educated to understand that categories are abstract classifications, not predictive prophecies of one’s abilities or characteristics.
Labels are not always negative. They can reflect positive characteristics, set useful expectations, and provide meaningful goals in our lives. Labels aren’t inherently good or bad, and used thoughtfully, accurately, and correctly can have a significant positive impact.
Invisible disabilities, regardless of their label, can be painful. The person’s difficulties aren't always hidden from others, and some may unfairly judge the person for them since there may be no visible signs to indicate the causes of the behavior.
Miranda Melcher, coauthor of NVLD and Developmental Visual Spatial Disorder in Children (2022), argues that labels could help people find others with similar experiences and coping strategies/methods, as well as reduce psychological stress by knowing they are not alone. “Labels can be negative and stigmatizing," she acknowledges, "but not having a label won't stop the behavior/symptoms from happening, so it just means they happen in fear and uncertainty."
So, if you withhold a label for fear of stigma, you prevent support, learning, and understanding, and don't shield one from bad things, because those will happen anyway from the behaviors/symptoms that aren’t being treated.
Linda Karanzalis, author of Misnamed, Misdiagnosed and Misunderstood (2022) agreed that individuals with a learning disorder may feel a sudden intense feeling of relief when learning that their challenges are not their fault, that there is a name for them, and that there is something real affecting them. But she pointed out that a person is so much more than a diagnosis.
Labeling allows professionals to communicate with one another based on the category of learning characteristics. The issue is impacted by how the label is being used or misused.
Choosing the Right Words
Misused labels can hinder a child's self-esteem and are often focused on what the child cannot do rather than on which skills the child may be able to strengthen or learn. YaeBin Kim and Heidi Petermeier (2019) stressed that it is never too late to realize the negative impacts of labels, to become aware of a negative perception you may have about yourself or others, and to work to reframe that image. To avoid unfavorable labeling, they recommended that professionals think before they speak and choose their words wisely, considering the cost and effect of the potential label and how it will affect the child now and in the future. It is always better to use labels and/or words that will offer encouragement and support. Education.com offers five compelling reasons to use labels accurately and appropriately, summarized below.
1. Identifying a Disability Helps You Help the Student. Accurately and properly identifying the learning difficulty is an essential first step. Labeling may be necessary for students to get the help they need from the professionals who can help them best. They can help parents and professionals understand that their students may require out-of-the-box thinking. Labeling can be a responsible and necessary step to find specific interventions and supports that target students' specialized needs.
2. By Law, Kids With Labels Have Access to Special Services. Labels are required by school districts for students to receive services. The classifications given to students make teachers and schools legally responsible for providing supports to students that they may not have been able to receive otherwise. For example, the child may be able to receive instruction from a specially trained professional or in a learning support room at a pace that works for them.
3. Categories Can Help Researchers Find New Solutions. Each category conveys a general idea about learning styles and characteristics. Classifying learning needs with a label helps professionals offer research-based interventions, accommodations, and modifications that are proven to help children with similar learning needs.
4. Labels May Help Teachers and Peers Be More Understanding. Classifying students as learning disabled (LD) can lead teachers and peers to better tolerate and accept such students. A label can also protect students from damaging blame, ridicule, or shame.
5. Labeling Helps Spread Advocacy and Awareness. LD labels can highlight the concern of the public. Disability-specific advocacy groups (e.g., parents of children with autism, dyslexia, or NVLD) enable individuals to come together to promote helpful programs, encourage and fund research, and trigger legislative change.
The Future
Having a non-neurotypical brain needs to be de-stigmatized. Labels need to be used with precision and only when needed or helpful, not in situations in which they are harmful. The neurodiversity movement has encouraged scientists to study the high cost of forced conformity for people with autism. As documented by Cassidy et al., 2018, there is a link between trying hard to “pass” as a non-autistic and an elevated risk of suicide. As unconscious bias has been brought into the light, inappropriate labeling must be explained and publicized.
If you or someone you love is contemplating suicide, seek help immediately. For help 24/7, dial 988 for the National Suicide Prevention Lifeline, or reach out to the Crisis Text Line by texting TALK to 741741. To find a therapist near you, visit the Psychology Today Therapy Directory.
References
Margolis and Broitman, (2023) Learning Disorders Across the Lifespan: A Mental Health Framework, 2023, Springer
Broitman et all, 2021, NVLD and Developmental Visual-Spatial Disorder in Children: Clinical Guide to Assessment and Treatment, Springer.
Karanzalis, Linda, (2022), Misnamed, Misdiagnosed, Misunderstood: Recognizing and Coping with NVLD (Nonverbal Learning Disorder) from Childhood Through Adulthood, Heerlen Publishing
Cassidy, S., Bradley, L., Shaw, R. et al. Risk markers for suicidality in autistic adults. Molecular Autism 9, 42 (2018).
YaeBin Kim and Heidi Petermeier, 2019 The Dangers of Labeling- https://extension.unr.edu/publication.aspx?PubID=3011, (Avoid labeling your child, Extension Fact Sheet-19-13).
Becker, Howard Saul, Outsiders: Studies in the Sociology of Deviance. (New York: The Free Press, 1963). ISBN 978-0-684-83635-5