RESUMO
OBJECTIVE: This study evaluated the receptive vocabulary of girls diagnosed with Rett Syndrome (RS) by employing eye-tracking technology and examined how these objective measures compared with parents' perceptions of their daughters' language abilities. METHOD: Fourteen girls with RS and eleven typically developing peers participated. Instruments included the Kerr Scale, a parental questionnaire on communication skills, the Peabody Picture Vocabulary Test - PPVT-4, and eye-tracking equipment. The PPVT-4's initial 12 cards, each displaying four images, were presented on screen for 5 s for the child's initial inspection. Subsequently, the same card was shown for 5 s with instructions to identify the picture matching the word, repeated three times in a randomized order. RESULTS: Eye-tracking assessments revealed that girls with RS with less severe symptoms, performed below typically developing peers with aged 3-4 years. The number of eye fixations emerged as a reliable metric for assessing their performance. A positive correlation was found between parental reports of their daughters' vocabulary knowledge and their ability to identify the correct stimulus, suggesting comprehension and active engagement in the testing process. CONCLUSION: This study presents a pioneering approach by combining parental perceptions with eye-tracking measures to assess receptive vocabulary in girls diagnosed with Rett Syndrome. Despite showing lower performance levels compared to significantly younger peers, the findings suggest that these individuals use less effectively eye contact as a mode of communication.
RESUMO
This study examined the parents' journey in the search of a diagnosis of Autism Spectrum Disorder (ASD) for their child and it was accomplished in two stages. The Stage 1 included the analysis of 20 records of children diagnosed with ASD attended in a clinic (2015-2017). We verified that the symptoms had been noticed between ages 13-24 months by most parents; the most reported symptom was verbal communication delay and different neuropediatricians were suspicious of the diagnosis; the most performed treatment was speech therapy. The Stage 2 was implemented to complement the findings of stage 1 and to characterize the clinic (311 cases in total). In this sample, we verified that 65.5% of the children were diagnosed with ASD; the parents and a single neuropediatrician were responsible for the referral. Despite the early detection of changes and seeking help, the parents sometimes received guidance that the child's development matched the expected for the age.
Este estudo averiguou o percurso de pais em busca de diagnóstico de Transtorno do Espectro Autista (TEA) para seus filhos e foi realizado em duas fases. Na fase 1, foi realizada a análise de 20 prontuários de pessoas atendidas em uma clínica entre 2015-2017 e que receberam diagnóstico de TEA. Nessa amostra, constatou-se que a maioria dos pais percebeu os sintomas entre 13-24 meses; o sintoma mais relatado foi atraso na comunicação verbal; os profissionais que mais levantaram suspeita de TEA foram diferentes neuropediatras; o tratamento mais realizado foi o fonoaudiológico. Na fase 2, para complementar os achados da fase 1 e caracterizar a clínica, o banco de dados foi analisado (total de 311 casos). Nessa amostra, verificou-se que 65,5% dos casos tiveram diagnóstico de TEA; as origens da maioria dos encaminhamentos eram um único neuropediatra e os pais. Apesar de detectarem alterações em idades precoces e buscarem ajuda, os pais, algumas vezes, receberam orientações de que o desenvolvimento da criança estava adequado para a idade.
Este estudio determinó el recorrido de los padres en busca del diagnóstico del Trastorno del Espectro Autista (TEA). Se llevó a cabo en dos fases: 1) análisis de 20 registros médicos de personas atendidas en una clínica (2015-2017) y que recibieron diagnóstico del TEA. La mayoría de los padres percibieron los síntomas entre 13-24 meses; lo más reportado era retardo de lenguaje; profesionales que levantaron la sospecha del TEA fueron diversos neuropediatras; terapia del habla fue tratamiento más logrado; 2) para complementar los hallazgos de la fase 1 y caracterizar la clínica, se analizó su base de datos (total: 311 casos): 65,5% de los casos tenía el diagnóstico del TEA; origen de la mayoría de los referidos: un solo neuropediatra y padres. A pesar de detectar cambios en las edades tempranas y buscar ayuda, los padres a veces recibieron orientación que el desarrollo del niño era apropiado para la edad.
