Follow Up of Adults with Autism Who Received Complete Assessment in Childhood

Introduction: Autism is a kind of neurodevelopmental disorder, and most of its victims suffer from lifelong functional disabilities. Long-term outcomes of these cases may be measured through many dimensions, including their educational, occupational status, social function, independency, general social outcome, autism-related problems, cognitive or language abilities or quality of life.
Objectives and methods: The sample of this study are autistic children previously comprehensively assessed at Children’s Mental Health Center of National Taiwan University Hospital from 1986 to 1997, who were older than 18 years of age as of 2010. The early data collected in their childhood included demographic and personal information (gender, ages at time of first visit and assessment, dates of the assessment, parental educational level), psychological and behavioral profiles (Temperament and Activity Scales, Chinese Childhood Developmental Inventory), and autistic symptoms (Clancy Behavioral Rating Scale and Childhood Autism Rating Scale). Current status of these participants regarding education, occupation, independency, social function and general social outcome was followed up on.
Results: For the early data during the years of the study period, we observed trends in decreasing age at first visit, increasing age at assessment, rising maternal educational level, lessening autistic disorder symptomatology, and increasing developmental quotients. These changes may have been due to improved diagnostic criteria, government policy, and healthcare professionals’ and parents’ increased awareness of autistic disorder. Follow-up data revealed these participants’ social outcome was poor. Only 24.6% of the participants went to college and above. 36.1% of the participants had work experience, but most jobs were unstable, non-skilled, supervised, and sheltered. Regarding social relationships, 61.7% of the participants had no friends outside of the family, and none had been married or had children. Most (90.2%) lived with their parents with partial independence. At subjectively rated functional levels, 35.3% and 45.8 % of the participants were rated as “poor” and “very poor” by self and family, respectively. Half of the participants’ social outcome was rated as “poor” and “very poor” (49.2 %) according to the objective rating. Autistic symptomatology in childhood predicts outcome most strongly. Overall adult outcome was significantly correlated with ages of first visit and assessment, the scores of CARS, CBRS, and expressive language, conceptual comprehension, self help, and general development of CCDI. Multiple regression indicated that CARS was the strongest predictor of outcome, followed by the score of CBRS.
Conclusion: Our study reveals the enormous needs of adults with autism and families in Taiwan. Lack of adequate occupational and social intervention and support after special education in the schools, accompanied with an increasing population of autism diagnosed in the society, indicates many more missions remained in the future. If comprehensive treatment programs for the population with autism extend from early childhood to late adulthood, children currently growing up with autism will enjoy a brighter future.