This pilot study examined the level of access to autism spectrum disorder (ASD)-related resources and services and the types of ASD intervention in Lima, Peru. A total of 24 ASD specialists participated in this pilot study and completed a survey that contained 20 questions, which were designed to collect information on the level of access to ASD resources and types of ASD interventions they currently offer to their clients with ASD. Also, this survey gathered information on the benefits of their services, cost of interventions and barriers they encounter.
Autism spectrum disorder (ASD) is a developmental disability that affects social and communication skills and usually begins from infancy to the first three years of life (Lord Cook, Leventhal, & Amaral, 2000; Phetrasuwan, Miles, & Mesibov, 2009). The number of children diagnosed with ASD or related disorders has grown dramatically in the last decade. It is estimated that today in the United States about one in every 68 children are diagnosed with ASD (Christensen et al., 2016).
Despite the fact that research has generated much understanding of the biology of ASD and underlined the importance of early intervention, in developing countries access to effective interventions and services remains a challenge for people with ASD and their families. In 2006, the World Health Organization identified Peru as one of 57 countries with a critical deficit in the supply of skilled health workers (Boslaugh, 2013).
Research shows that early intervention for children with ASD can make a considerable difference in the child’s development (Moore & Goodson, 2003). Currently, there are many interventions used with children with ASD, however, not all of them can be effective. What works best for one child on the autism spectrum may not work for another child (Corsello, 2005). In the United States, interventions for ASD range from medical to educational, which include the use of methods based on applied behavior analysis (ABA), speech and language therapy, occupational and physical therapies, psychopharmacology, and complementary and alternative medicines (Myers & Johnson, 2007). ASD interventions, appropriate services, training and information for families and school personnel reduce the risks of social exclusion of children with ASD and increase their ability to learn and succeed.
However, access to health care services is one of the major issues in developing countries. O’Donnell (2007) identifies four dimensions of access to health care services: availability, accessibility, affordability, and acceptability. O’Donnell states that in most developing countries, appropriate healthcare interventions are not provided, and a major reason is the lack of resources. Moreover, he suggests that although healthcare services are available, their quality is poor or the access is reserved for more affluent people, rather than for those from low-income families.
Samadi and McConkey (2011) state that most research on ASD has been conducted in affluent English-speaking countries, which have extensive professional support services. In contrast, in developing countries, there are three main issues regarding research in ASD. First, developing countries lack data on the prevalence of ASD nationally. Second, research should elucidate the parental understanding of ASD and the impact it has on these individuals. Finally, education and training should be provided to families when professional supports are sparse.
Lima is expected to become a megacity in the next few years and despite its economic growth, health inequality remains an important issue. For this reason, I conducted a 6-week (May 11th - June 24th, 2017) pilot study in Lima, Peru, which examined the level of access to ASD-related resources and services and the types of ASD intervention in Lima, Peru. Thus, the purpose of this pilot study was to examine the level of access to ASD-related resources and services and the types of ASD intervention in Lima, Peru.
Thanks to the Latin American & Iberian Institute and the Tinker Foundation’s Field Research Grant, I spent six weeks (May 15 to June 21, 2017) in Lima, Peru, conducting a pilot study on the level of access to ASD resources and types of ASD interventions available to individuals with ASD and their families. To recruit participants for my study, I sent emails to centers specialized in ASD. The only requisite for participation was to have experience providing services for individuals with ASD. A total of 24 ASD specialists agreed to participate in this pilot study and completed a survey that contained 20 questions which were designed to collect information on the level of access to ASD resources and types of ASD interventions they currently offer to their clients with ASD. Also, this survey gathered information on the benefits of their services, cost of interventions and barriers ASD specialists encounter.
The average age range of the respondent was 25-30 years old. 87% of the sample were female, 13% were male. The majority (71%) of respondents indicated they had a bachelor’s degree, and 29% reported an advanced degree, such as a master’s or doctorate degree.
Types of Interventions
31% of the respondents reported that they offer Picture Exchange Communication System (PECS) to their clients. The second most common offered intervention (18%) is Floortime (DIR), followed by Training and Education of Autistic and Related Communication Handicapped Children (TEACCH), Applied Behavior Analysis (ABA), and others such as Theory of Mind.
Cost of Interventions
71% of those surveyed responded that each intervention session cost around 50-100 Peruvian Nuevo Soles (US $15-30). If we consider that literature recommends 40 hours a week of Applied Behavior Analysis (ABA), and if we also take into consideration that in 2016 the World Bank estimated that the Peruvian Gross Domestic Product per capita was 6,045.70 US dollars (19,131.60 Peruvian Nuevo Soles) it follows that only a small portion of the population can access these interventions.
Coverage of Interventions
87% of those surveyed responded that the interventions are not covered by the public system. 21% of the respondents stated that the interventions are covered by a private system, and 50% responded that the interventions are not covered by a private system. Apparently, the government does not cover the cost of these interventions and very few private health insurances cover the cost of the interventions, which can limit the access to these services.
The majority of respondents (45%) felt that the cost of the interventions is the main barrier for individuals with ASD and their families to obtain services. What caught my attention is that 9% of respondents reported that language barriers prevent individuals with ASD and their families from getting services. Although Peru’s official language is Spanish, there are other predominant languages, such as Quechua, Aymara, and Shipibo. In the last decade, a large number of indigenous peoples migrated to Lima in search of jobs and educational opportunities. However, they face language exclusion on a daily basis, especially in the area of health. The Peruvian Government should address this barrier by providing training to health professionals in order to offer equal access to health services.
Resources for Parents
Since parent involvement is essential to the child’s progress, I asked two questions to find out if respondents provide training and education for parents whose children are receiving their services. 50% of the respondents stated that they do provide education and training for parents and the other 50% reported that they do not offer these services. Previous research has shown the importance and effectiveness of parental involvement. Kaminski et al. (2008) reviewed several studies related to parent training and found that it has a positive effect on the child. It is for this reason that ASD interventionists should emphasize the importance of providing education and training for parents. When respondents were asked whether or not they provide educational materials for families on how to cope with their child’s diagnosis, 83% reported that they do not offer educational material on this matter.
Overall, ASD specialists in Lima, Peru offer a variety of evidence-based interventions for individuals with ASD. However, this pilot study identified the following barriers for individuals with ASD and their families: (a) high cost of ASD interventions; (b) lack of educational materials and training for parents; and (c) language barriers. I believe that public agencies should consider these barriers in the planning and implementation of policies at both national and local community levels.
Experience as a researcher
As a Peruvian, having familiarity with the country and the language definitely helped, but there were times where I had to brainstorm to resolve a problem quickly. For example, to save money I decided to use public transportation. Public transportation in Lima is also the most common, easy and cheap way to get around the city. However, I founded it difficult to solely rely on public transportation, especially if I had meetings in several places on the same day. A couple of times I had to reschedule a meeting with a participant because the bus was so crowded that I had to wait for a long time for the next bus. After that, I decided to take taxis and leave at least 2 hours before a scheduled meeting. Also, in the beginning, it was difficult to get my initial contacts for this pilot study. Some of the centers I contacted took several days to reply to my emails, and others did not reply at all. Therefore, in order to resolve this issue, I called to those centers to verify that I got the correct email addresses. Overall, I can say that my “Peruvian experience,” as a researcher, provided me with a variety of skills in research, survey design, report-writing and interviewing of professionals. My trip to Peru was truly an experience, and I will be forever grateful for what I have learned.
I would like to thank Dr. Cathy Qi and Dr. Ruth Luckasson from the University of New Mexico for providing me the guidance throughout this project. This pilot study would not have been possible without their immense support. I would also like to thank the Latin American and Iberian Institute and the Tinker Foundation for having funded my study.
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