Autism Spectrum Disorder: A Global Perspective The incidence of autism spectrum disorder (ASD) is rising in prevalence worldwide. In order to provide appropriate assessment and treatment practices, it is essential to examine the governmental influence and family perspectives concerning this disorder. Results of qualitative and quantitative studies provide salient information for implementing effective and culturally appropriate ... Article
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Article  |   September 01, 2011
Autism Spectrum Disorder: A Global Perspective
Author Affiliations & Notes
  • Alisha S. Richmond
    Department of Communication Disorders, Texas State University, San Marcos, TX
Article Information
Special Populations / Autism Spectrum / International & Global / Articles
Article   |   September 01, 2011
Autism Spectrum Disorder: A Global Perspective
SIG 17 Perspectives on Global Issues in Communication Sciences and Related Disorders, September 2011, Vol. 1, 39-46. doi:10.1044/gics1.2.39
SIG 17 Perspectives on Global Issues in Communication Sciences and Related Disorders, September 2011, Vol. 1, 39-46. doi:10.1044/gics1.2.39
Abstract

The incidence of autism spectrum disorder (ASD) is rising in prevalence worldwide. In order to provide appropriate assessment and treatment practices, it is essential to examine the governmental influence and family perspectives concerning this disorder. Results of qualitative and quantitative studies provide salient information for implementing effective and culturally appropriate assessment and treatment practices for children with an ASD diagnosis. Speech-language pathologists and audiologists should promote and support efforts that will increase the global public's awareness of the disorder, collaborative research efforts, and the development of culturally appropriate assessment and service.

Introduction
Autism spectrum disorder (ASD) is characterized by deficits in social interactions and communication skills, as well as the presence of stereotypic and repetitive behaviors (DMS-IV-TR; American Psychiatric Association [APA], 2000). Currently in the United States, 1 out of every 110 children has an ASD diagnosis (Autism and Developmental Disabilities Monitoring [ADDM], 2009). While the prevalence rates for ASD remain unknown in many parts of the world, such as Africa (Ametepee & Chitiyo, 2009), the prevalence, assessment, and treatment of ASD is a global concern. Epidemiological results indicate that ASD affects 1% of the global population and is more common in males than females. ASD prevalence rates have propelled world leaders to develop a strategic plan to care for children and families affected by the disorder in all nations.
The World Health Organization (WHO) developed an action plan to support the worldwide population of persons with ASD (WHO, 2008). The Mental Health Gap Action Program (mhGAP) provides world leaders with strategies for remediating the living conditions of all individuals with mental health disorders (WHO, 2010). The action plan recommends implementing governmental policies that support persons with ASD and family members who are caring for persons with ASD. The mhGAP action plan should be adapted to the needs of local regions. Reports from parents of children diagnosed with ASD will be beneficial to developing culturally appropriate assessments and service delivery models.
Parent report of retrospective events concerning the early onset of ASD characteristics is continuously providing valuable information about this disorder across societies (Daley, 2004; Wimpory, Hobson, Williams, & Nash, 2000). While parents provide similar accounts of ASD characteristics, the child's age at which parents had initial concerns of ASD differ. For example, parental concern regarding ASD characteristics in children began on average at 9 months of age in Australia (Young, Brewer, & Pattison, 2003), 14 months of age in the United States (Chawarska et al., 2007), 24 months of age in the United Kingdom (Howlin & Asgharian, 1999), and 25 months of age in India (Daley, 2004). Therefore, speech-language pathologists (SLPs) should acknowledge that the core characteristics of ASD are universal (e.g., social interaction and communication delays). Differences in cultural expectations concerning child development, however, should be considered in promoting public awareness of, diagnosing, and treating ASD.
Help-Seeking Behaviors and Treatment
Help-seeking behavior can be defined as the act of seeking assistance for a medical problem through contacting a professional. Factors associated with families seeking an ASD diagnosis or treatment for ASD include knowledge of ASD, social acceptance of the disorder, demographic residence, and socioeconomic status. Awareness of ASD symptoms propels families to initiate an ASD diagnosis for children at an earlier age. The global community of SLPs can assist with informing the public of ASD symptoms in young children through public service initiatives and educating health-care professionals. It should be noted that some families may wait to seek assistance if there is a social stigma attached to an ASD diagnosis.
Demographic and socioeconomic factors play a role in the assessment and treatment of ASD. In general, families who live in urban areas are likely to seek and receive an ASD diagnosis earlier than families residing in rural areas (Chen, Liu, Su, Huang, & Lin, 2008). Children with ASD residing in rural areas are also less likely to see ASD specialists as frequently as children from urban areas (Chen et al., 2008). Because specialists usually practice in urban areas, families residing in rural areas may have to travel long distances to receive treatment. Families of lower socioeconomic status may not seek assistance for ASD symptoms due to the lack of access to health-related services. Families may not place seeking an ASD diagnosis as a high priority if there is a lack of available treatment options within the community or if other pressing family needs must be considered (e.g., lack of food). In any case, the family is the primary support unit for children with ASD.
The Role of the Family
Families of children with ASD are currently being studied across Western and non-Western cultures (McCabe, 2008, 2010; Phelps, Hodgson, McCammon, & Lamson, 2009; Shaked, 2005). Results indicate that the disorder influences many family variables (Lin, Tsai, & Chang, 2008; McCabe, 2008; Shaked, 2005). Children with ASD also may not be able to abide by all of the local customs because of the symptoms of the disorder. Furthermore, parents will have various views and practices concerning the socialization process for children with an ASD diagnosis. All of these factors can affect assessment and treatment practices of ASD across cultures and countries.
A resounding theme across ASD studies conducted globally is that mothers, who generally serve the role of primary caregiver, are significantly affected by their children's ASD diagnosis (Lin et al., 2008; McCabe, 2008; Shaked, 2005). Regardless of maternal employment situations, mothers of children with ASD reported high levels of stress, few opportunities for respite, and high demands for being the primary teacher to children with ASD (Lin et al., 2008; McCabe, 2008; Shaked, 2005). Some mothers were employed outside of the home, while others chose to stay at home. Reasons given for working outside of the home included having a self-identity, maintaining contact with society, and experiencing feelings of increased mood. Mothers working exclusively in the home reported that working outside of the home was too difficult and appropriate educational settings for their children were limited or unavailable (McCabe, 2008; Shaked, 2005). The majority of mothers felt that sacrifices made for the child with ASD led to remediation of ASD symptoms (Lin et al., 2008). Mothers from China and an Ultraorthodox Jewish community in Israel also reported having to educate their children outside of the cultural community, which was seen as another consequence of ASD (McCabe, 2010; Shaked, 2005).
Parents caring for children with ASD also have to determine how to socialize the children into customs and traditions. They can either advocate for the child through individual efforts or through public organizations. Advocating can occur through discussing the disorder with community members who are not familiar with ASD or by allowing children with ASD to participate in traditional and societal customs to the best of their abilities. For example, Shaked (2005) found that mothers within an Ultraorthodox Jewish community in Israel socialized their children with ASD by (a) allowing the child to participate with accommodations or (b) choosing the societal activities that the child could participate in without offending others. Results from qualitative studies, such as those previously mentioned, can aid in determining the most appropriate assessment and treatment practices for children with ASD from various cultures.
Treatment Methods
Many treatment programs for ASD are now available for children of various ages and developmental levels. Treatment models for children 2-4 years of age have documented substantial gains in remediating the disorder (Corsello, 2005). Treatment programs occurring within educational settings are also needed because (a) ASD may not always be detected at an early age and (b) the needs of children with ASD change over time.
Parent-training programs are now used worldwide to increase the communication skills of children with ASD (Krishnamurthy, 2008; Lang, Machalicek, Rispoli, & Regester, 2009; Wang, 2008; Whittingham, Sofronoff, Sheffield, & Sanders, 2009). Evidence is also emerging for the efficacy of the Picture Exchange Communication System (PECS; Bondy & Frost, 1998) and the Treatment and Education of Autistic and Communication Related Handicapped Children program (TEACCH; Schopler, Mesibov, & Baker, 1982) for treating ASD in various cultures (Hart & Banda, 2010; Travis & Geiger, 2010; Tsang, Shek, Lam, Tang, & Cheung, 2007). The use of advanced technology is also contributing to the treatment practices of children with ASD (Oberleitner et al., 2006). Although treatment options are becoming available in various countries, accessibility to these treatments remains a challenge.
Early positive dyadic interactions between children with developmental disorders and their caregivers create neural connections that can alter the child's original developmental trajectory (Shonkoff & Phillips, 2000). In some instances, parents of children with ASD automatically adjust the communication demands and expectations during dyadic interactions to improve (Lin et al., 2008). Using parent-child interactions to increase the social and communication abilities of children with ASD is also a viable speech and language service delivery model (National Research Council, 2001). Although the foundations of parent-training programs for children with ASD may be primarily rooted in Western cultural beliefs, non-Western cultures are using these strategies to empower and train parents of children with ASD (Wang, 2008). Parents from non-Western cultures, such as Iran and Africa, want training and support from professionals on how to help their child with ASD (Ahmadi, Sharifi, Zalani, Bolouk, & Amrai, 2011; Olivier, Hing, & Danny, 2009). These programs train parents to be the communication partners of children with ASD. Video clips, clinician modeling, and clinician feedback sessions are all common components of parent-training programs (Lang et al., 2009; Wang, 2008). Parent-training workshops are sponsored by professionals or specialized medical facilities or through government-sponsored treatment services.
Parent-training programs may target a specific treatment model, such as pivotal response training (Nefdt, Koegel, Singer, & Gerber, 2010), or consist of a mixed method training that includes sessions on various topics, such as problem behaviors and naturalistic teaching opportunities. Results from both types of treatment models have shown that parent training for children with ASD can increase young children's social communication skills (Wetherby & Woods, 2006) and joint attention skills (Kasari, Gulsrud, Wong, Kwon, & Locke, 2010). Parent-training programs that teach participants how to implement and embed the target strategies within naturally occurring routines and activities are also effective (Lord & Bishop, 2010; Wetherby & Woods, 2006). Some cultures may differ in their expectations of parents as children's communication partners; however, parents of various cultures may participate in training when children receive an ASD diagnosis. SLPs still need to recognize that there is a cultural bias in training parents as communication partners of young children (van Kleeck, 1994). In some instances, creating alternate treatment programs or modifying existing treatment packages may be necessary. As provided in the American Speech-Language-Hearing Association guidelines (ASHA, 2006), SLPs should continue treating each family in an individualized manner and determine the most appropriate ASD treatment model.
Parent education concerning ASD is one component of treatment programs occurring outside of the United States. For example, researchers reported that parent-training programs occurring in India and China included a psychoeducational component for parent participants (Kalra, Seth, & Sapra, 2005; Wang, 2008). These sessions educated parents on the facts and misconceptions concerning an ASD diagnosis. Results indicated that parents felt a sense of empowerment following the sessions. Some parents reported that the psychoeducational sessions were the most useful of all treatment sessions (Wang, 2008). Educating parents on ASD may be a necessary component of parent-training sessions in countries where there is a lack of public awareness concerning the disorder.
Treatment programs for school-age children with ASD are occurring primarily within educational settings and include strategies such as Social Stories™ and visual supports, as well as programs such as TEACCH and PECS (Lal & Bali, 2007; Okada, Ohtake, & Yanagihara, 2010; Travis & Geiger, 2010; Tsang et al., 2007). The TEACCH model was shown to be effective in increasing the skills of preschool and school-age children in Western and non-Western societies such as China, Japan, and Kuwait (Schopler, 2000; Tsang et al., 2007). This model promotes success for children with ASD by using familial and educational resources to promote an appropriate learning environment. Environmental arrangement, low teacher-child ratios, and visual supports are components of the TEACCH program. Children with ASD, who participated in approximately 7 hours of TEACCH therapy during an academic program in China, demonstrated gains in communication and socialization skills (Tsang et al., 2007). As reported by the investigator, the parent component of the TEACCH program appeared to be culturally appropriate for the participants, because the Chinese culture emphasizes the importance of parents in training children.
Researchers also successfully implemented the PECS model for children with ASD in Western and non-Western nations (Anderson & Moore, 2007; Travis & Geiger, 2010). PECS is an augmentative and alternative communication system that allows participants to exchange pictures to communicate with others. Because the child must present the picture to a communication partner, PECS also addresses common challenges demonstrated by children with ASD (e.g., joint attention). Two children attending a special education program in South Africa made communication gains following the implementation of PECS. The researchers intended to increase the children's ability to respond and request during naturally occurring activities by training teachers and caregivers to implement PECS in the educational and home environment. Results indicated that both children increased using communicative acts and responding to others following participation in the study (Travis & Geiger, 2010).
Prospective Video Technology Practices
A more recent practice in observing and treating the deficits associated with ASD is the use of telemedicine and video sharing (Oberleitner et al., 2006). The advancement of video technology can expand the current knowledge of ASD symptoms. This emerging practice is also beneficial in training and educating parents without the compounded effects of demographic constraints and literacy demands.
Even with the current treatment models, parents are still concerned about ASD service delivery. For example, parents residing in the Republic of China reported that they would like to see more services available for all families and a more structured referral system for treatment options immediately following an ASD diagnosis (McCabe, 2008). Professionals have also reported that the services for ASD may not be readily accessed by all families due to time and financial constraints (Krishnamurthy, 2008). Long wait-lists for service provisions, limited financial resources, and parental beliefs may lead parents to alternative methods of treating ASD that may not be recommended by health-care professionals.
Complementary and Alternative Medicine
Parents use complementary and alternative medicine (CAM) to treat ASD in children (Hanson et al., 2007; Krishnamurthy, 2008; Sanders et al., 2003; Senel, 2010; Wong, 2009). CAM is defined as healing and/or health practices not prescribed by health-care professionals that patients feel will positively treat health conditions. Examples of CAM include acupuncture, herbal remedies, and healing rituals. Currently, families are combining CAM and evidence-based treatment practices to treat ASD. CAM can be used by any family regardless of culture, religious background, or socioeconomic status. In a study in China, 47% of the participants (parents of children diagnosed with ASD) wanted to use both CAM and Western medicine (Wong, 2009). According to Krishnamurthy (2008), approximately 90% of patients receiving behavioral treatment at an autism treatment facility in India also reported using CAM for children with ASD. CAM use for children with ASD in the United States was recently documented at 70% (Hanson et al., 2007). Given these results, SLPs should ask all families of patients with ASD about the use of CAM. The SLP can create a nonjudgmental environment and discuss with families the advantages and disadvantages of using CAM, based on empirical evidence.
What We Can Do
It is necessary for SLPs to understand that caring for persons with ASD is of great concern to all nations. Supporting children with ASD places substantial burdens (i.e., economic and personnel) on all countries. The costs and stress to families caring for children with ASD can also be overwhelming. Evidence-based research concerning familial perspectives and cost-effective assessment and treatment models of ASD are vital to the sustainability of nations and families.
As professionals, SLPs can advocate and support international collaborations to promote advancements in ASD assessment and treatment practices. SLPs should also share evidence-based practices concerning ASD with professionals in other countries through conferences and publications. Finally, researchers and clinicians who study and treat ASD internationally should keep in mind that while ASD is recognized globally as a disorder, cultural factors such as developmental milestone achievement and public awareness of the disorder may influence assessment and treatment practices.
Summary
The effort to assess and treat ASD is now a global movement. The increase in prevalence rates for the disorder suggests that governmental policies combined with evidence-based assessments and service-delivery models are vital to treating the disorder. Parent-training treatment models can increase the communication skills of children with ASD who reside in Western and non-Western countries. Because culture plays an essential role in communication development, future research will determine if service delivery models developed in one society are appropriate to use in other societies.
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We've Changed Our Publication Model...
The 19 individual SIG Perspectives publications have been relaunched as the new, all-in-one Perspectives of the ASHA Special Interest Groups.