Global Perceptions Of Autism
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Diagnosis, treatment, and experiences of autism varies globally. Although the diagnosis of autism is rising in post-industrial nations, diagnosis rates are much lower in developing nations.


Africa


Diagnosis

Autism research conducted in Africa has been infrequent and unrepresentative of all African countries, making the prevalence of autism in Africa difficult to estimate. 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 Epilepsy is a group of non-communicable neurological disorders characterized by recurrent epileptic seizures. Epileptic seizures can vary from brief and nearly undetectable periods to long periods of vigorous shaking due to abnormal electrica ...
or intellectual disability.


Treatment

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. Supernatural explanations of autism can influence treatment seeking by encouraging people to first seek help from
spiritualists Spiritualism is the metaphysics, metaphysical school of thought opposing physicalism and also is the category of all spiritual beliefs/views (in monism and Mind-body dualism, dualism) from ancient to modern. In the long nineteenth century, Spir ...
and
traditional healer A folk healer is an unlicensed person who practices the art of healing using traditional practices, herbal remedies and the power of suggestion. The healer may be a highly trained person who pursues their specialties, learning by study, observa ...
s.


Experience

Studies have not 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.


Asia


Diagnosis

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 The Childhood Autism Rating Scale (CARS) is a behavior rating scale intended to help diagnose autism. CARS was developed by Eric Schopler, Robert J. Reichier, and Barbara Rochen Renner. The scale was designed to help differentiate children wi ...
(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. (see Autism in China)


Treatment

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.


Experience

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 Hong Kong ( (US) or (UK); , ), officially the Hong Kong Special Administrative Region of the People's Republic of China (abbr. Hong Kong SAR or HKSAR), is a city and special administrative region of China on the eastern Pearl River Delta i ...
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. 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. Questions about a potential cause of the
Hikikomori , also known as acute social withdrawal, is total withdrawal from society and seeking extreme degrees of social isolation and confinement. ''Hikikomori'' refers to both the phenomenon in general and the recluses themselves. ''Hikikomori'' ha ...
phenomenon in Japan have been hypothesized. Because ''Hikikomori'' is similar to the social withdrawal exhibited by some people with autism spectrum disorders, some psychiatrists suggest that it may be related to autism spectrum disorders and other disorders that may affect social integration, but that their disorders are altered from their typical Western presentation because of Japanese sociocultural pressures.


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 be viewed differently across cultures. These differences may extend to the perception of autism in different cultures and perceptions of the most effective treatment options.


Western countries


Diagnosis

The median prevalence rate of autism spectrum disorders in
Europe Europe is a large peninsula conventionally considered a continent in its own right because of its great physical size and the weight of its history and traditions. Europe is also considered a subcontinent of Eurasia and it is located entirel ...
is 59 per 10,000 people, while the median prevalence estimated in North America is 86 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 The Modified Checklist for Autism in Toddlers (M-CHAT) is a psychological questionnaire that evaluates risk for autism spectrum disorder in children ages 16–30 months. The 20-question test is filled out by the parent, and a follow-up portion is ...
(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 The Autism Diagnostic Interview-Revised (ADI-R) is a structured interview conducted with the parents of individuals who have been referred for the evaluation of possible autism or autism spectrum disorders. The interview, used by researchers and cl ...
,
Autism Diagnostic Observation Schedule The Autism Diagnostic Observation Schedule (ADOS) is a standardized diagnostic test for diagnosing and assessing autism, now in its second edition as of 2012. It is considered to be a "''gold standard''" in diagnosing Autism Spectrum Disorder (ASD) ...
, and
Childhood Autism Rating Scale The Childhood Autism Rating Scale (CARS) is a behavior rating scale intended to help diagnose autism. CARS was developed by Eric Schopler, Robert J. Reichier, and Barbara Rochen Renner. The scale was designed to help differentiate children wi ...
, as well as clinical judgment using criteria from the ''Diagnostic and Statistical Manual''.


Treatment

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 Applied behavior analysis (ABA), also called behavioral engineering, is a psychological intervention that applies empirical approaches based upon the principles of respondent and operant conditioning to change behavior of social significanc ...
, Developmental, Individual Difference, Relationship-based (DIR)/ Floortime Model, and
Treatment and Education of Autistic and Related Communication Handicapped Children The University of North Carolina TEACCH Autism Program creates and disseminates community-based services, training programs, and research for individuals of all ages and skill levels with autism spectrum, autism spectrum disorder (ASD), to enhance ...
(TEACCH). 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 Antipsychotics, also known as neuroleptics, are a class of psychotropic medication primarily used to manage psychosis (including delusions, hallucinations, paranoia or disordered thought), principally in schizophrenia but also in a range of ...
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. More research is needed to determine if the safety and effectiveness of medications.


Experience

The estimated lifetime cost of caring for an individual with autism as of 2013 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.


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 Witchcraft traditionally means the use of magic or supernatural powers to harm others. A practitioner is a witch. In medieval and early modern Europe, where the term originated, accused witches were usually women who were believed to have ...
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.


Autistic culture

An autistic culture has emerged, accompanied by a number of movements and events that encourage greater tolerance of those with autism. Prominent movements include the autistic rights movement and
neurodiversity Neurodiversity refers to diversity in the human brain and cognition, for instance in sociability, learning, attention, mood and other mental functions. It was coined in 1998 by sociologist Judy Singer, who helped popularize the concept ...
movement which seek to promote the idea that autism is a difference rather than a disease. Events include
World Autism Awareness Day World Autism Awareness Day is an internationally recognized day annually on April 2nd, encouraging Member States of the United Nations to take measures to raise awareness about autistic individuals throughout the world. It was designated by the ...
,
Autism Sunday Autism Sunday, also known as the International Day of Prayer for autism spectrum disorders, is an event observed annually on the second Sunday of February. History Autism Sunday was first held in 2002 during Autism Awareness Year in the United K ...
,
Autistic Pride Day Autistic Pride Day is a pride celebration for autistic people held on 18 June each year. Autistic pride recognises the importance of pride for autistic people and its role in bringing about positive changes in the broader society. Although ...
,
Autreat Autism Network International (ANI) is an advocacy organization run by and for autistic people. ANI's principles involve the anti-cure perspective, the perspective that there should not be a goal to "cure" people of autism. History ANI was star ...
, and others.


Autism rights movement

The autism rights movement, also known as the autistic culture movement or the neurodiversity movement, is a social movement within the context of disability rights that emphasizes the concept of
neurodiversity Neurodiversity refers to diversity in the human brain and cognition, for instance in sociability, learning, attention, mood and other mental functions. It was coined in 1998 by sociologist Judy Singer, who helped popularize the concept ...
, viewing the
autism spectrum The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
as a result of natural variations in the
human brain The human brain is the central organ (anatomy), organ of the human nervous system, and with the spinal cord makes up the central nervous system. The brain consists of the cerebrum, the brainstem and the cerebellum. It controls most of the act ...
rather than a disorder to be cured. The autism rights movement advocates a variety of goals, including greater acceptance of autistic behaviors;Mission Statement.
Autism Acceptance Project. Retrieved on 2008-11-24.
therapies that focus on coping skills rather than imitating the behaviors of
neurotypical Neurotypical (NT, an abbreviation of neurologically typical) is a neologism widely used in the neurodiversity movement as a label for non-neurodivergent people. That is, anyone who has a typical neurotype, so excluding autism, autistic people, t ...
peers;Mission Statement.
Aspies for Freedom. Retrieved on 2008-11-24.
the creation of social networks and events that allow autistic people to socialize on their own terms;
(2008-05-23) AIN.
and the recognition of the autistic community as a
minority group The term 'minority group' has different usages depending on the context. According to its common usage, a minority group can simply be understood in terms of demographic sizes within a population: i.e. a group in society with the least number o ...
. Autism rights or neurodiversity advocates believe that the
autism spectrum The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
should be accepted as a natural expression of the
human genome The human genome is a complete set of nucleic acid sequences for humans, encoded as DNA within the 23 chromosome pairs in cell nuclei and in a small DNA molecule found within individual mitochondria. These are usually treated separately as the ...
. This perspective is distinct from two other likewise distinct views: the medical perspective, that autism is caused by a genetic defect and should be addressed by targeting the autism gene(s), and
fringe theories A fringe theory is an idea or a viewpoint which differs from the accepted scholarship of the time within its field. Fringe theories include the models and proposals of fringe science, as well as similar ideas in other areas of scholarship, such ...
that autism is caused by environmental factors such as
vaccines A vaccine is a biological preparation that provides active acquired immunity to a particular infectious or malignant disease. The safety and effectiveness of vaccines has been widely studied and verified.< ...
. The movement is controversial in autism advocacy and research groups. A common criticism leveled against autistic activists is that the majority of them are " high-functioning" or have
Asperger syndrome Asperger syndrome (AS), also known as Asperger's, is a former neurodevelopmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of beha ...
and do not represent the views of " low-functioning" autistic people and does not represent the wishes of autism community as a whole. With certain individuals emphasizing their desire to be treated.


See also

*
Epidemiology of autism The epidemiology of autism is the study of the incidence and distribution of autism spectrum disorders (ASD). A 2022 systematic review of global prevalence of autism spectrum disorders found a median prevalence of 1% in children in studies publis ...
*
Societal and cultural aspects of autism Societal and cultural aspects of autism or sociology of autism come into play with recognition of autism, approaches to its support services and therapies, and how autism affects the definition of personhood. The autistic community is divided pr ...


References

{{Reflist Sociological and cultural aspects of autism