A First-Person Account of Developmental Language Disorder

Abstract

Purpose: The aim of this study is to share the lived experiences of an adult with developmental language disorder (DLD) and relate her experience to the evidence base and issues in clinical practice. Method: We co-wrote a first-person account grounded in the research literature. We organized the account into six main sections: (a) the early signs of DLD; (b) diagnosis; (c) treatment; (d) the impact of DLD on family relationships, social–emotional health, and academic performance; and (e) considerations for practicing speech-language pathologists. We close with (f) the first author's current perspective on life with DLD. Conclusions: The first author was diagnosed with moderate-to-severe DLD in early childhood, and she continues to exhibit subtle and occasional symptoms of DLD as an adult. At specific points in development, her family relationships were disrupted and her social, emotional, and academic functions were disabled, particularly in the school context. Supportive adults, especially her mother and her speech-language pathologist, helped lessen these impacts. DLD and its consequences also positively influenced her worldview and professional choices. The precise nature of her DLD and her experiences around the disorder will not be true of everyone with DLD. Nevertheless, the broad themes that emerge from her narrative are reflected in the evidence base and thus are likely applicable to many individuals with DLD or other neurodevelopmental conditions.

Exploring self-reported quality of life in developmental language disorder

“…This preliminary study explores self-reported quality of life in four adolescents and one young adult with DLD, and the role of language and other risk factors in quality of life. This study addresses recent calls for research on neurodevelopmental conditions across the lifespan and research describing self-reported lived experiences of individuals with neurodevelopmental conditions (i.e., neurodiversity-informed approaches), particularly measures that are known to be associated with mental health and wellbeing (Antolini & Colizzi, 2023; Connel at al., 2014; Eigsti et al, 2022; Georgiades & Kasari, 2018; Hobson et al, 2024; e.g., Orrego et al, 2023).…”

“…Measures that capture lived experiences, like self-reported quality of life indicators, can provide further insight and represent a neurodiversity-informed approach. Orrego et al (2023) underscores recent recommendations to characterize the clinical course of a condition across the lifespan. Examining quality of life in transitional phases like adolescence through young adulthood is critical because mental health and wellbeing are especially vulnerable during these developmental periods (Antolini & Colizzi, 2023).…”

“…The role of language and other risk factors in quality of life may also vary depending on functional demands associated with given developmental stages. In their first-person, descriptive account of lived experiences of an adult with DLD, Orrego et al (2023) suggests that functional challenges this individual faced varied depending on changing expectations of her environment. Examples are social barriers related to making friends and getting bullied in elementary school versus educational barriers related to diagnosis disclosure and receiving accommodations in college.…”

“…Recently, however, there have been calls for research that treats neurodevelopmental conditions as persistent and having important impacts on functioning through adulthood (Antolini & Colizzi, 2023). There have also been recent calls for neurodiversity-informed evidence that characterizes the lived experiences of individuals with neurodevelopmental conditions, particularly evidence obtained from self-report in addition to parent/caregiver or teacher report (e.g., Eigsti et al, 2023; Georgiades & Kasari, 2018; Hobson et al, 2024; Orrego et al, 2023). An increased focus on quality of life indicators related to everyday functioning has emerged in recent years (Eadie et al, 2018; Haukedal et al, 2023), as well as first-hand accounts of lived experiences that describe relationships, supports available across development, and other self-reported successes and challenges (e.g., in DLD, Orrego et al, 2023, and in autism, Kim, 2019).…”

“…There have also been recent calls for neurodiversity-informed evidence that characterizes the lived experiences of individuals with neurodevelopmental conditions, particularly evidence obtained from self-report in addition to parent/caregiver or teacher report (e.g., Eigsti et al, 2023; Georgiades & Kasari, 2018; Hobson et al, 2024; Orrego et al, 2023). An increased focus on quality of life indicators related to everyday functioning has emerged in recent years (Eadie et al, 2018; Haukedal et al, 2023), as well as first-hand accounts of lived experiences that describe relationships, supports available across development, and other self-reported successes and challenges (e.g., in DLD, Orrego et al, 2023, and in autism, Kim, 2019). Though there are a few studies published in the last 30 years on self-reported quality of life, they are limited to studies from one project that took place in the United Kingdom (Conti-Ramsden et al, 2017) and an early study by Tomblin and colleagues (Records et al, 1992).…”