Study of Parental Perception of Symptoms and Satisfaction with Disclosure of the Diagnosis of An Autism Spectrum Disorder

• Background: The early diagnosis and the familial acceptance of child's developmental disorder are very important for the support of children with autism spectrum disorder (ASD). We need to know about the first parental perception of relevant symptoms in children with ASD and the effect of early diagnosis on the parental acceptance.
• Objectives: This present study determined 1) when did the parents first noticed developmental problems with their child; 2) what kind of symptom the parents noticed;  3) when the parents were first notified of the child having a diagnosis of ASD; 4) whether the families satisfied with disclosure of the diagnosis of an ASD.
• Methods: We enrolled 120 parents who are members of a non-profit organization for families having a child with ASD (104 boys, 16 girls). They were willing to fill out a self-report questionnaire on the disclosure of the diagnosis and their acceptance of it.
• Results: The average age of the children of participants at the study was 12.3 years. Most children were elementary school students, and of those, 67% attended normal classes and 23% attended special classes. Most parents responded that they first noticed problems with their child’s development between the ages of 18 and 36 months, and a considerable number already noticed symptoms before 18 months. Indications appearing before 18 months included not aligning glances, not responding to hugs, late development of movement, being poor at action and activities, staring at walls, and playing in strange ways. Symptoms noticed between 18 and 36 months included late development of language and easily becoming lost, and above 36 months they included poor adaptation to group life and the inability to get along with children of the same age. Parents waited up to about 40 months after noticing symptoms before going for a diagnosis. Diagnoses of autism were significantly faster than other diagnoses (Asperger syndrome, atypical autism and ASD tendency). There was a tendency among those whose children were diagnosed at a young age to respond that “diagnosis came at a good time and it was helpful in making decisions afterwards.” Many parents wanted to know not only the name of the diagnosis but what the prospects were, what they should do concretely, and what sort of social resources are available to aid in raising their children. In addition, some dissatisfied voices also expressed worrying too much as they were given no concrete advice and told only to wait and see, although they sought expert advice.
• Conclusions: The results underscore the importance of an early diagnosis and interactive process between families and practitioners to help the parents satisfied with the diagnosis.