Abstract
BACKGROUND: Previous studies indicate that a subset of children with Tourette syndrome (TS) experiences communication difficulties; however, the specific characteristics of these challenges remain underexplored. AIMS: This study aimed to (1) quantify the proportion of children with TS within a North American cohort exhibiting communication challenges as assessed by a standardized parent questionnaire, (2) determine how many children with parent-reported communication challenges had been diagnosed with a communication disorder, (3) examine the relationship between parent-reported co-occurring conditions and parent-reported communication skills, and (4) evaluate the association between parent-reported communication skills and parent-reported psychosocial functioning. METHODS AND PROCEDURES: Questionnaires were distributed to parents in North America through TS-focused social media groups and organizations (United States and Canada) and Canadian medical clinics specializing in TS care. Data collected included demographic information, information on tic severity and co-occurring conditions, parent-reported communication function using the Children's Communication Checklist, Second Edition (CCC-2), and psychosocial function using the Strengths and Difficulties Questionnaire (SDQ). RESULTS: The questionnaire was completed by 61 parents of children with TS. On the CCC-2, 62% of children obtained scores consistent with age-appropriate communication skills, while 38% obtained scores suggestive of communication challenges (> 1SD below the mean on general communication and/or social-pragmatic communication). Ten percent of children were reported to have a formal language disorder diagnosis. A significant correlation was observed between communication proficiency and psychosocial functioning: lower scores for general and social-pragmatic communication skills were associated with increased psychosocial difficulties (r = -0.44, p < 0.001). Notably, the presence of specific co-occurring conditions did not predict general communication or social-pragmatic communication challenges. CONCLUSION AND IMPLICATIONS: Speech-language pathologists (S-LPs) should anticipate that most children with TS will exhibit age-appropriate communication development; however, a substantial proportion will present with communication challenges in formal language and/or social communication. Medical practitioners are advised to promptly refer children for speech-language evaluation upon identifying potential communication challenges, particularly among those demonstrating heightened psychosocial difficulties. Comprehensive assessment by S-LPs should encompass both core language and social-communication dimensions. WHAT THIS PAPER ADDS: What is already known on this subject There is evidence that communication challenges are relatively common in children with TS; however, we have little information about what these challenges look like and what other factors relate to them. What this study adds This study demonstrated underdiagnosis of language and communication difficulties in TS, given the discrepancy between communication challenges suggested by CCC-2 results and the number of children who had previously received a communication diagnosis. Moreover, parent-reported challenges were observed for both social communication and general communication. This is the first study to report a correlation between psychosocial functioning and communication skills in children with TS. What are the clinical implications of this study? Children with TS should be referred for speech-language pathology services if challenges are indicated and attention should be placed on evaluating aspects of social-pragmatic language while promoting acceptance of social differences that are not interfering with functional communication.