By Karla McGregor and Catherine Carotta
Boys Town National Research Hospital
University of Western Ontario
Learning that a child has a disability can be one of the most difficult moments in the life of a family. But receiving a diagnosis from a trusted professional is the first step toward learning how to assist, support, and advocate for your child. A diagnosis represents legitimacy for your child’s struggle and your concerns about your child. If you have a diagnostic label for the problem, you can find out information about the problem—how it is treated, how it changes as your child grows, how it affects families, and how to find relevant support networks. In many cases, a label is required to obtain services. Insurance companies require a diagnostic ‘code’ before costs related to the evaluation and treatment of a person with an illness or disability will be covered. Even in schools where the labels are general classifications of educational need, such classification must be made before the child is provided with an individualized education program (IEP).
Many parents of children who have Developmental Language Disorder (DLD), have never heard of DLD. Here we explore some potential reasons and provide some guidelines for those of you who are seeking a diagnosis.
DLD Goes By Many Names
As a disability, DLD falls within the intersection of medical and educational domains. DLD is a neurodevelopmental disorder, meaning the brain develops differently than expected. That sounds medical. On the other hand, DLD affects learning. That sounds educational. Medical labels are called ‘diagnoses.’ Speech-language pathologists who work in medical, university, or private clinics will diagnose DLD, although they might use a different term for the diagnosis (e.g., language delay, expressive-receptive language disorder, specific language impairment). Under U.S. law, DLD is treated in schools and that is where it is often identified. In U.S. public schools, labels are called “educational classifications” in the Individuals with Disabilities Education Act. In a school setting then, a parent will be told that a child qualifies for speech/language support but might not be told the specific diagnosis that applies to the child’s problem.
If you are told that your child qualifies for speech/language support, ask for the specific term or label for the problem so that you can find out more information. If you are given any term that includes the word “language” ask whether DLD or Specific Language Impairment (SLI is another common term for DLD) is also a diagnostic term that applies to your child’s difficulties so that you don’t miss relevant sources of information.
Some Speech-Language Pathologists Choose Not to Label DLD
In an informal poll conducted in 2017, 65% of speech-language pathologists in Canada reported that they do not provide a label for a child’s language disorder in their clinical report or when sharing findings with a caregiver. In contrast, 64% of those same speech-language pathologists said that they would use the label ‘stuttering,’ when appropriate. Both stuttering and DLD are neurodevelopmental disorders, both are within the scope of practice for the speech-language pathologist, and both are treated in public schools. Why then are these professionals more reticent to share the DLD label with parents?
One reason is that the diagnosis of DLD requires lots of data gathering. DLD is not apparent to the eye or ear in the way that stuttering is. For that reason, the speech-language pathologist may not be able to come to a definitive diagnosis from a one-or two-hour assessment conducted in a school or clinic setting. She might prefer to provide the label after having worked with you and your child over an extended period of time, wishing to gain more evidence about how the level of language functioning is impacting the child’s social-emotional and academic life. Still others may feel more comfortable using the label when they are doing so as a part of a multidisciplinary team in which they examine the child’s speech-language skills in relation to intellectual functioning, educational performance, and/or social-emotional competency.
Ask your speech-language pathologist how much time and what kind of information is needed before a diagnosis can be made. That way you will have clear expectations and she will be aware of your desire to have a label that will allow you to learn more about the challenges your child is facing.
Another reason that speech-language pathologists might hesitate to share the diagnosis of DLD is that it requires a difficult conversation. Many parents express relief upon being told that their child has DLD because that diagnosis helps them to make sense of the behaviors and emotions they have witnessed from their child. These parents may express a need to move forward by saying, “tell me what we need to do next.” To others, the diagnosis of DLD—which unlike stuttering is an invisible disability—comes as a jolt. It is news that surprises, saddens, or angers them. Some parents will not accept the label as it contradicts what they imagine or hope for their child. Even if you are seeking a diagnosis, the news is bound to bring forth many emotions, all of which are valid.
Find a speech-language pathologist who you trust. Understand that emotions are a natural part of learning about your child’s diagnosis. Work with your speech-language pathologist to navigate the complexities of the diagnosis and to calibrate your understanding of the diagnosis with hers and with your knowledge of your child.
The Bigger Picture
The hodge-podge of terms for DLD and the reticence to use any term at all are impediments to all families who experience DLD. The use of a label for DLD, ideally a consistent one, will allow speech-language pathologists to improve the care they provide. With a label, it is easier to find the latest research and clinical practice guidelines. Because a label provides a ‘verbal shorthand’ for representing the features of a disorder, it helps the speech-language pathologist to communicate clearly with other professionals. This is extremely important when it comes to DLD because people with DLD often require the help of many different professionals: reading specialists, educational psychologists, and teachers, to name a few. At the population level, labelling DLD will promote awareness and concern about the problem. DLD is one of the most common disabilities affecting children yet very few people know what it is. Increased awareness can lead to better funding for research on DLD and more effective policies for ensuring excellent services for people who have DLD.
We recognize that all labels are imperfect. DLD is not one thing; it will affect one person differently than another and a single label does not capture that diversity. Also the challenges associated with DLD change as the child grows up and this label—not any label—can capture that. People who have DLD are not defined by the label. A label conveys what the problem is, but not who the person is or what she is capable of achieving. But without label you and your child cannot find information, talk to other families who share your experience, and access the help you need. In family-centered practice, the evaluation process is considered a “shared experience between families and professionals in which information and ideas are exchanged to benefit a child’s growth and development” (DEC, 2007, p. 16). We encourage you to find a speech-language pathologist who will share this difficult experience with you, navigate the process alongside you, and provide the information you need to help your child.
Division of Early Childhood (2007). Promoting positive outcomes for children with disabilities: Recommendations for curriculum, assessment, and program evaluation. Missoula, MT: Author
How Do Labels Affect Students? Education and Behavior. Accessed September 24, 2019.