Communicating a Diagnosis of Developmental Language Disorder to Families: The Need for Cultural Humility
Written By:
Leslie E. Kokotek, Ph.D, SLP
University of Cincinnati
Karla N. Washington, PhD, CCC-SLP, S-LP(C)
University of Toronto
Receiving the diagnosis of a child’s neurodevelopmental disability is an emotional moment for any family. In some cases, they are relieved to have found answers that can lead to treatment. In others, there is confusion, grief, or even anger. Many times, parents feel a mix of these emotions and may experience some feelings more strongly than others.
This moment may be especially difficult when the diagnosis is Developmental Language Disorder(DLD). DLD is not as well-known as other conditions like Autism or ADHD, so parents and extended family may feel especially uncertain about what it entails. They may even doubt the diagnosis or feel there were cultural and personal differences that better explain their child’s communication during the evaluation process. Language is so tightly linked with who we are, our personality and our culture, that the diagnosis of DLD can feel like a criticism of the child or the family as a whole. That is why it is important that we adopt a stance of cultural humility when communicating with the families we serve.
Tighe and Namazi (2022) offer an evidence-based strategy to speech-language pathologists (SLPs)who diagnose speech and language disorders in children. They emphasize the importance of:
Setting up for the conversation
Addressing caregiver Perceptions
Informing caregivers’ about the diagnosis
Connecting families with resources
Empathizing
Offering Strategies
The SPICES model underscores key steps for establishing rapport and effectively communicating with families. Below are additional considerations that serve to demonstrate cultural humility and respect for family’s unique backgrounds.
Take the time to learn from families as the experts. Ask families about their concerns and goals for their child. Ask about expectations for children’s communication in their family. Ask them for specific information about the child’s language or dialect that might be influencing the production or comprehension of the language during the evaluation. Encourage families to describe ways their child’s communication is similar and different to other children in their home, family, and community.
Practice and communicate a ‘disorder within dialect’ approach, not a ‘disorder because of dialect’ approach. DLD is NOT a matter of failing to speak like a white monolingual child, although biases in standardized tests and rigid evaluation practices risk reducing it to that. Children from any background can have DLD. The disorder within a dialect approach encourages SLPs to think about how DLD might manifest for an individual child and their specific circumstances.
A child with DLD is a child who is experiencing challenges socially, emotionally, or academically because they do not understand or express the language of their own community as well as their same-age peers from their own community.
To guard against pathologizing linguistic variations, SLPs must provide individualized evaluations that are tailored to the child's specific language background. If tests are not normed on a sample of children that represents the child’s particular background, they will not detect the subtleties of ‘disorder within dialect’ and may even incorrectly detect a disorder.
Incorporate alternatives to static norm-referenced language assessments. Completing a case history with families and using that time to converse about their concerns for their child is a good start. When having these conversations with families, SLPs can and should acknowledge how cultural and linguistic mismatches may influence the evaluation outcomes. Share with families the steps you are taking to prevent that and take their input to heart.
Dynamic assessments are evidence-based alternatives to static norm-referenced tests. They are culturally and linguistically valid because they compare the child to themself rather than to someone else. They allow the SLP to observe how quickly and easily the child can learn and remember some new aspects of language. Elizabeth Peña and her team further show how dynamic assessments can help identify DLD, one sign being that learning is effortful or requires a great deal of scaffolding by the SLP. In many settings, however, SLPs may feel pressured to include a norm-referenced assessment as part of their evaluation. An administrator may even tell them that it is required. In these situations, SLPs are encouraged to use the norm-referenced assessment in a more dynamic way such as reporting raw scores instead of standard scores for progress monitoring, using the task items to facilitate a test-teach-retest procedure, and using the norm-referenced tools in combination with other dynamic assessments and a thorough case history. The LEADERS Project offers examples for how this might look as well as additional strategies for providing a comprehensive evaluation.
In summary, effective communication and cultural humility are essential when sharing a potential diagnosis of DLD with families. Accepting that we can never fully understand the cultural and linguistic makeup of a community that is different from our own, while also realizing that parents and caregivers are the experts on their child’s communication, will only help to improve our ability to support children with DLD. Practicing cultural humility supports being ‘other oriented.’ It enables shifting between being a learner and a leader in describing language function and disability, so that together we can collectively improve outcomes and build collaborative relationships that benefit each child and their family.
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