Global perceptions of autism

Autism overview

The Diagnostic and Statistical Manual of Mental Disorders, Sixth Edition, defines a person with autism spectrum disorder as having persistent deficits in social communication and social interaction. This includes having deficits in social-emotional reciprocity, deficits in nonverbal communicative behaviors used for social interaction, and deficits in developing, maintaining, and understanding relationships. Autism is a pervasive developmental disorder, meaning that it is characterized by developmental delays in basic functioning such as socialization and communication. Pervasive developmental disorders are also called autism spectrum disorders. These disorders include autistic disorder (autism), Asperger syndrome, childhood disintegrative disorder, Rett syndrome, and pervasive developmental disorder-not otherwise specified. The prevalence and incidence of autism spectrum disorder is thus greater than or equal to the prevalence and incidence of autism in any given area. Before the release of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, autistic disorder was the most common autism spectrum disorder. The fifth edition does not distinguish between the specific disorders. Currently, clinicians give a diagnosis of autism spectrum disorder rather than specifying autism, Asperger syndrome, or the other pervasive developmental disorders.

The causes of autism are very complex and include complex interactions between genes and the environment. It is not clear whether autism is caused by rare gene mutations or by multigene interactions. Researchers have not been able to trace autism to a single mutation or gene abnormality. Although there is not agreement among researchers about the specific causes of autism, there is agreement that autism affects brain development. One theory, for example, posits that mutations disrupt synaptic pathways in the brain.

Diagnosis in western countries

The median prevalence rate of autism spectrum disorders in Europe is 61.9 per 10,000 people, while the median prevalence estimated in the United States is 65.5 per 10,000. In western nations, children who show developmental problems are referred for evaluation by a pediatrician. Preliminary screening instruments include the Modified Checklist for Autism in Toddlers (M-CHAT), Social Communication Questionnaire (SCQ), and Autism Spectrum Screening Questionnaire (ASSQ). Autism spectrum evaluations are typically conducted by professionals who specialize in developmental disorders, such as psychologists, psychiatrists, or neurologists. Diagnostic instruments that assessing clinicians may use include the Autism Diagnostic Interview-Revised, Autism Diagnostic Observation Schedule, and Childhood Autism Rating Scale, as well as clinical judgment using criteria from the Diagnostic and Statistical Manual.

Treatment in western countries

Behavioral intervention and medications are frequently used to manage the symptoms of autism. Early intervention programs can improve cognitive and language skills in children who have been diagnosed with autism spectrum disorder. Behavioral interventions include Applied Behavioral Analysis, Developmental, Individual Difference, Relationship-based (DIR)/Floortime Model, and Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH). Applied behavioral analysis is a widely used intervention that uses operant conditioning to reward and increase prosocial behaviors and diminish behaviors that negatively impact learning. The DIR/Floortime Model allows those conducting treatment to tailor the treatment to individual children. Its focus is on the mastery of social, emotional, and intellectual capacities rather than focusing on skills and specific behaviors. TEACCH also uses a behavioral approach and teaches children skills for self-care and to manage inappropriate behavior.

There are no medications that have been approved to treat autism spectrum disorder, but some medications may be prescribed off-label to treat symptoms of ASD. Antipsychotic medications may be used to reduce irritability and aggression in children with autism. Stimulant medications are used to treat symptoms of hyperactivity and inattentiveness. Antidepressant medications are occasionally prescribed to reduce the restricted and repetitive behaviors associated with autism. These drugs, such as selective serotonin uptake inhibitors, improve social interaction and self-control by reducing obsessive behavior. When used alongside psychosocial therapies, these drugs can greatly decrease the struggles of social interaction for people on the autism spectrum, although more research is needed before the medications can be safe and effective.

Experience in western countries

The estimated lifetime cost of caring for an individual with autism is between $1.4 million and $2.4 million, using data from the United Kingdom and the United States. While some of these costs are incurred for diagnosis and treatment costs, the problem is exacerbated by reduced family earnings when a family member may forgo working in order to care for a family member with autism.

Developing countries

As recently as 1984, researchers questioned whether autism was a universal phenomenon. Some scientists believed that autism was a condition limited to Western and technologically developed nations; however, now there is evidence of increased prevalence of and knowledge about ASD cross-culturally and internationally. Although autism has a biological basis and there are clear criteria for an autism diagnosis, its symptoms may differ cross-culturally. These differences may extend to the perception of autism in different cultures and perceptions of the most effective treatment options.

In recent years, international organizations such as Grand Challenges in Global Mental Health have been working with other health organizations to address concerns about the lack of autism research and services around the world. Autism-specific organizations such as Autism Speaks have similar advocacy goals. In 2008, Autism Speaks developed the Global Autism Public Health Initiative. The goals of the initiative include increasing public and professional awareness of Autism Spectrum Disorder, enhancing research expertise and collaboration, and enhancing the delivery of early diagnosis and treatment by providing training and expertise. Through this initiative, Autism Speaks has worked with partners in Central and South America, the Middle East, Asia, and Africa to increase training on recognizing autism and to promote awareness.

Diagnosis in South America

In Venezuela, the prevalence of autism is estimated at 1.1 per 1000 people, while the prevalence of autism spectrum disorder is estimated at 1.7 per 1000 people. This statistic may be an underestimation due to methods that Lopez-Duran used; he provided rates only for identified cases of autism and did not estimate unidentified cases of autism that had not been documented. In Brazil, estimations of the international prevalence of autism suggest that 1.5 million Brazilians have Autism Spectrum Disorder. The first Brazilian Meeting for Autism Research indicated that one of the priorities for autism in Brazil includes promoting training in autism diagnosis and early detection. Schools can be used to facilitate early detection. In one study conducted in Colombia, parents reported that onset of autism-related symptoms occurred around 21 months of age, while average age of diagnosis was 45 months. Similar to other research, reported symptoms of autism in this study included a delay in language acquisition and impaired social behavior.

Treatment in South America

Considering the prevalence of autism in these nations, Montiel-Nava and Peña suggest that health and education leaders should work to ensure that there are resources and services available to children and families affected by autism. In Brazil, the Brazilian Public Health System suggests that scientific evidence should govern public health policy and that autism research is necessary for treatment and intervention strategies to become more prevalent. In the Colombian study, the subjects averaged 64 months of age at the start of treatment when diagnosis occurred at the average age of 45 months.

Experience in South America

Possible explanations for underestimation of prevalence in South America include that autism and other developmental disorders are more stigmatized in this area than in developed nations. Further, South Americans' limited knowledge and awareness of autism could be a factor in the limited access to resources. Researchers at the Brazilian Meeting for Autism Research discussed priorities for addressing the challenges facing autism research in Brazil. These include increasing autism research, providing more funding for autism organizations such as the São Paulo Research Foundation, increasing public awareness of autism, and increasing the capacity for autism services through professionals and established community services.

Diagnosis in Africa

Autism research conducted in Africa has been infrequent and unrepresentative of all African countries, making the prevalence of autism in Africa difficult to estimate. Hughes found that over half of reported ASD cases described children who were nonverbal, or lacked expressive language. Nonverbal rates of as high as 71% of children with autism in Africa have been reported, while the rate in the United States is 25% nonverbal. This suggests that prevalence may be underestimated because reported cases are skewed toward more severe, and thus more recognizable, cases of autism. In Africa, an autism diagnosis often co-occurs with epilepsy or intellectual disability.

Treatment in Africa

Possible reasons for the fact that many reported cases of autism in Africa are nonverbal cases include difficulty finding services even when a diagnosis is given. Educational and behavioral interventions for children with autism are largely unavailable, mental health care facilities are few, and there are too few facilities and personnel trained to work with autistic children in reference to the estimated number of autism cases in Africa. Bakare and Munir found that health care workers had low to average knowledge and awareness of autism spectrum disorder. In particular, psychiatric health care workers recognized symptoms of ASD better than pediatric health care workers, which implies that early recognition and intervention for children with autism in Africa is infrequent. Many Africans have spiritual beliefs about psychiatric disorders, which extends into perceived causes of autism. In one survey of Nigerian pediatric or psychiatric nurses, 40% cited preternatural causes of autism such as ancestral spirits or the action of the devil. Supernatural explanations of autism can influence treatment seeking by encouraging people to first seek help from spiritualists and traditional healers.

Experience in Africa

Studies have not yet elucidated the clinical presentation of autism in African nations. Autism awareness is low, particularly in sub-Saharan Africa. Bakare and Munir suggest that education for the public and for health care workers is crucial for early diagnosis of ASD so that early intervention can be effective for African children. One study has focused on a community-based approach to autism research, in which the researchers identified cultural meanings of autism in South Africa and used these meanings to develop diagnostic tools. The study suggests that stigma against psychiatric disorders is a large barrier in recruiting participants for research. Existing organizations such as the International Child Neurology Association raise awareness about autism in Africa.

Diagnosis in Asia

Autism was not recognized until the 1980s in China. The estimated prevalence of autism is 11.8 per 10,000 people while the estimated prevalence of autism spectrum conditions is 26.6 per 10,000 people. In Japan, recent estimates of autism spectrum are as high as 13 per 10,000 people. This suggests that autism is more common in Asia than previously thought. The Childhood Autism Rating Scale (CARS), Clancy Autism Behavior Scale (CABS), Autism Behavior Checklist (ABC), and Checklist for Autism in Toddlers (CHAT) are frequently used as diagnostic instruments in China.

In India, there is a significant gap between initial symptom recognition and seeking a diagnosis. Early diagnosis can be very important if early interventions to decrease symptoms are valued. It is unclear whether symptoms appear later in Indian children than in children in the West, or whether the symptoms are recognized later. Initial symptoms of autism recognized by parents included social difficulties and withdrawal, speech delays, and developmental difficulties. After symptom recognition, an average of 7.15 months passes before some families take their child to a medical professional. Reasons include beliefs that the symptoms are not problematic and that the children will outgrow symptoms such as language impairments. Misdiagnosis of autism as "mental retardation" is common. Despite this, awareness of autism and its symptoms has increased in India in the past two decades.

Treatment in Asia

The lack of literature on the subject of treatment options for autistic children in Asia's developing nations indicates that there are few options in these areas. There are a few special programs for autistic children in India, but most children attend the same educational programs as children diagnosed with mental retardation. In 2013, eight South Asian countries adopted a charter at the South Asian Autism Network's first meeting. The nations plan on working with each other's ministries, and SAAN is advocating long-term health care as well as intervention programs for people with autism. Despite the lack of researched treatment options in Asia, the autism advocacy organization Autism Speaks offers informational pamphlets on their website in Cambodian, Chinese, Arabic, and Vietnamese. These pamphlets also explain how families can access further translated materials and resources.

Experience in Asia

In certain areas, diagnosis and treatment of autism may be difficult because of the lack of facilities or physicians capable of autism recognition. Some families must travel for hours or days to reach an area in which diagnostic facilities are available. Stigma is also a salient issue. Families of children with autism in Hong Kong and China may experience stigmatization from others, which can lead to self-stigmatization in cultures where people focus on their social identity rather than their individual identity. This suggests that parents in China and Hong Kong may experience more stress from raising a child with autism than parents in other areas. Support from friends, families, and professionals is critical to enhance the psychological well-being of parents experiencing stigma. Daley suggests that autism may be of particular significance in India because of its characteristic abnormalities in social relationships, which may cause particular concern due to the value of social relatedness and conformity to social norms in India.

Challenges

Researchers who aim to obtain reliable data about autism around the world are challenged by many factors. Awareness about autism differs from nation to nation. Services for people with autism and their families differs in availability. The behavior of people with autism may differ cross-culturally, and the capacity to do autism research can be impeded because of these differences. A further challenge is that caregivers and professionals must have knowledge that certain symptoms are associated with autism, and they must perceive these symptoms as problematic. In a certain culture, for example, if language delays are not seen as uncommon until a child is four or five, a professional may not see the delay as symptomatic of autism. In some nations, such as South Korea, the stigma surrounding autism is so high that families may avoid getting their child tested for autism even when the child has noticeable developmental delays.

Elsabbagh and colleagues (2012) cite multiple challenges for researchers, including lack of funding for research. The 10/90 gap means that only 10 percent of global spending on health goes toward funding for problems that affect the poorest 90 percent of the world. They also discuss the lack of accessibility or availability of autism services, the expensive cost of resources for epidemiological studies, and variation in diagnosis because clinical judgment is often used for diagnosis.

Autism research is further complicated by the fact that families often have different perceptions of autism's etiology. Beliefs include the child being a product of witchcraft or parental misdeed or sin. Positive appraisals include parents' beliefs that the child is a blessing to show that the parents are worthy of taking care of such a child. Negative appraisals of what autism means and its etiology can cause increased stress in families of children with autism.