Chinese Parents' Perceptions of Early Development of Their Children Diagnosed with Autism Spectrum Disorders

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INTRODUCTION

Over the past two decades, a number of investigators in the West (e.g., Howlin & Moore, 1997; Mandel, Maytaili, & Zubritsky, 2005) have used survey method to investigate the mean age of initial diagnosis and initial age at which early intervention was provided for children with Autism Spectrum Disorders (ASD). For example, Mandel and colleagues (2005) collected survey data from 969 caregivers of children with ASD from Pennsylvania and reported that the average age of diagnosis was 3.1 years for children with autistic disorder, 3.9 years for children with pervasive developmental disorder-not otherwise specified (PDD-NOS), and 7.2 years for those diagnosed with Asperger's Syndrome (AS). In a more recent large scale survey in U.S., the reported median age of identification was 5.7 years old for children with ASD (Shattuck et al., 2009).

In addition to the initial age of diagnosis, early signs associated with initial parental concerns of children later diagnosed with ASD have also been scrutinized via survey administered to caregivers of children with ASD (Barbaro & Dissanayak, 2009). Studies showed that language and speech development have been reported as the most common concern by parents of children with ASD, followed by abnormal social and emotional behaviors (e.g, lack of response to people), and medical concerns (e.g., seizures) (De Giacomo & Fombonne,1998; Young, Brewer, & Pattison, 2003). De Giacomo and Fombonne reported that language delay was noticed by three quarters of the participants in their study. Young, Brewer, and Pattison found that 77.8% of parents reported their concern in language delay and 34.6% reported that their children did not pay attention to caregivers. Other early signs related to ASD commonly reported in studies were lack of appropriate gaze, lack of showing or pointing, lack of response to name, and repetitive movements (Wetherby et al., 2004).

With the increasing awareness of ASD in U.S., over the passing decades, a number of early intervention programs have been developed and proven to be effective for children with ASD (Dawson et al., 2009; Landa, Holman, O'Neil, & Stuart, 2011; Lovaas, 1987; Smith, Groen, & Wynn, 2000). Reviewing studies on early intervention programs for children with ASD, Corsello (2005) reported that the early intervention was delivered 12 to 36 hours per week involving participants with a mean age of the participants between 30 and 47. In a number of studies, participants in these studies received intervention at age of 3 years old (Smith, Groen, & Wynn) or younger (Landa et al.,). Studies have consistently demonstrated that early intervention was associated with an increase in intellectual functioning, adaptive skills, and communication abilities (Rogers & Vismara, 2008).

Studies on ASD have also emerged in Asia. For example, a number of prevalence studies have been conducted in East Asia over the past ten years, although differences in data collection, diagnostic criteria, and demographic characteristics of study samples (particularly regarding rural, urban, or mixed geographic location of study participants) make direct comparison of reported prevalence difficult (Matson & Kozlowski, 2011). In the most recent estimates from China, prevalence has been estimated at 1 per 1,000 (Zhang & Ji, 2008) and 5.6 per 10,000 (Yang, Hu, & Han, 2007). In Japan, prevalence is typically estimated at higher rates, with studies in the past decade suggesting prevalence of 19 per 10,000 (Honda, Shimizu, Imai & Nitto, 2005) and 13 per 10,000 (Kawamura, Takahashi & Ishii, 2008). Most recently, a population-based prevalence study in one demographically representative South Korean community suggested an ASD prevalence rate of 2.64% of all 7-12 year olds in Goyang (Kim et al., 2011).

Although limited, research has recently emerged to examine services available for children with ASD and their families in Asian nations. …