Global perceptions of autism

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.[1]

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.[2] Prevalence may be underestimated because reported cases are skewed toward more severe, and thus more recognizable, cases of autism.[3] In Africa, an autism diagnosis often co-occurs with epilepsy or intellectual disability.[3]

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.[4] 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.[4] Supernatural explanations of autism can influence treatment seeking by encouraging people to first seek help from spiritualists and traditional healers.[4]

Experience

Studies have not elucidated the clinical presentation of autism in African nations.[5] 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.[3]

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.[6][7] 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.[7] (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.[8]

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 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 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.[9]

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.[3] 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.[10][11]

Western countries

Diagnosis

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.[12] 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).[13] Autism spectrum evaluations are typically conducted by professionals who specialize in developmental disorders, such as psychologists, psychiatrists, or neurologists.[13] 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.[14]

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.[13] 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).[13]

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.[13] 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.[13] More research is needed to determine if the safety and effectiveness of medications.[15]

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.[12] 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. However, many autistics are capable of living on their own and have no additional cost attributed.[12]

The experience of actual autistics is often overlooked or ignored completely. People often focus on how autism affects parents of caregivers rather than focusing on the autistic themselves. This leads to an incomplete or inaccurate narrative of autism.[16] When autism is looked at from the autistics experience it gives a more accurate perception.

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 autistic people and their families differs in availability. The behavior of autistic people may differ cross-culturally, and the capacity to do autism research can be impeded because of these differences.[1][11] 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.[1]

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.[5] 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.[5]

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 movement which seek to promote the idea that autism is a difference rather than a disease.[17][18] Events include World Autism Awareness Day, Autism Sunday, Autistic Pride Day, Autreat, and others.[19][20][21][22]

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, viewing the autism spectrum as a result of natural variations in the human brain rather than a disorder to be cured.[23] The autism rights movement advocates a variety of goals, including greater acceptance of autistic behaviors;[24] therapies that focus on coping skills rather than imitating the behaviors of neurotypical peers;[25] the creation of social networks and events that allow autistic people to socialize on their own terms;[26] and the recognition of the autistic community as a minority group.[27]

Autism rights or neurodiversity advocates believe that the autism spectrum should be accepted as a natural expression of the human genome.

See also

References

  1. 1 2 3 Maguire C (April 16, 2013). "Autism on the rise: A global perspective". Global Health Review. Harvard College. Archived from the original on July 30, 2013. Retrieved May 10, 2018.
  2. ↑ Ametepee LK, Chitiyo M (2009). "What We Know about Autism in Africa: A Brief Research Synthesis" (PDF). Journal of the International Association of Special Education. 10 (1): 11–13. ISSN 1555-6913.
  3. 1 2 3 4 Bakare MO, Munir KM (July 2011). "Autism spectrum disorders (ASD) in Africa: a perspective". Afr J Psychiatry (Johannesbg) (Review). 14 (3): 208–10. doi:10.4314/ajpsy.v14i3.3. PMC 4115289. PMID 21863205.
  4. 1 2 3 Bakare MO, Munir KM (December 2011). "Excess of non-verbal cases of autism spectrum disorders presenting to orthodox clinical practice in Africa - a trend possibly resulting from late diagnosis and intervention". S Afr J Psychiatr (Primary study). 17 (4): 118–120. PMC 3252050. PMID 22229024.
  5. 1 2 3 Elsabbagh M, Divan G, Koh YJ, Kim YS, Kauchali S, Marcín C, Montiel-Nava C, Patel V, Paula CS, Wang C, Yasamy MT, Fombonne E (June 2012). "Global prevalence of autism and other pervasive developmental disorders". Autism Res (Review). 5 (3): 160–79. doi:10.1002/aur.239. PMC 3763210. PMID 22495912.
  6. ↑ Sun, X., & Allison, C. (2010). A review of the prevalence of autism spectrum disorder in Asia. Research in Autism Spectrum Disorders, 4(2), 156-167.
  7. 1 2 Sun X, Allison C, Matthews FE, Sharp SJ, Auyeung B, Baron-Cohen S, Brayne C (April 2013). "Prevalence of autism in mainland China, Hong Kong and Taiwan: a systematic review and meta-analysis". Mol Autism (Review). 4 (1): 7. doi:10.1186/2040-2392-4-7. PMC 3643868. PMID 23570419.
  8. ↑ "Sonia Gandhi: Policy "has not kept pace" with rising prevalence of autism". Autism Speaks. February 12, 2013. Retrieved May 10, 2018.
  9. ↑ Kary, Tiffany (2003). "Total Eclipse of the Son: Why are Millions of Japanese Youths Hiding from Friends and Family?". Psychology Today. Retrieved 13 October 2007.
  10. ↑ Matson JL, Worley JA, Fodstad JC, et al. (2011). "A multinational study examining the cross cultural differences in reported symptoms of autism spectrum disorders: Israel, South Korea, the United Kingdom, and the United States of America". Research in Autism Spectrum Disorders. 5 (4): 1598–1604. doi:10.1016/j.rasd.2011.03.007. S2CID 7233417.
  11. 1 2 Paula CS, Fombonne E, Gadia C, Tuchman R, Rosanoff M (2011). "Autism in Brazil: perspectives from science and society". Rev Assoc Med Bras (1992) (Editorial). 57 (1): 2–5. doi:10.1590/S0104-42302011000100002. PMID 21390445.
  12. 1 2 3 "Comprehensive and coordinated efforts for the management of autism spectrum disorders" (PDF). World health organization. April 8, 2013. Retrieved May 10, 2018.
  13. 1 2 3 4 5 6 "Autism spectrum disorder". National Institute of Mental Health. Retrieved May 10, 2018.
  14. ↑ Ventola PE, Kleinman J, Pandey J, Barton M, Allen S, Green J, Robins D, Fein D (October 2006). "Agreement among four diagnostic instruments for autism spectrum disorders in toddlers". J Autism Dev Disord. 36 (7): 839–47. doi:10.1007/s10803-006-0128-8. PMID 16897398. S2CID 45425529.
  15. ↑ Nolen Hoeksema, Susan (2014). "Chapter 10: Neurodevelopmental and Neurocognitive Disorders". (Ab)normal Psychology (6th ed.). New York: McGraw Hill Education. p. 294.
  16. ↑ https://autisticadvocacy.org/about-asan/what-we-believe/
  17. ↑ Shapiro, Joseph (26 June 2006). "Autism Movement Seeks Acceptance, Not Cures". NPR. Retrieved 10 November 2015.
  18. ↑ Trivedi, Bijal. "Autistic and proud of it". New Scientist. Retrieved 10 November 2015.
  19. ↑ "World Autism Awareness Day, 2 April". United Nations. Retrieved 17 November 2015.
  20. ↑ Bascom, Julia (18 June 2015). "Autistic Pride Day 2015: A Message to the Autistic Community". Retrieved 18 November 2015.
  21. ↑ "Autism Sunday – Home". Autism Sunday. 2010. Archived from the original on 3 March 2010. Retrieved 17 November 2015.
  22. ↑ "About Autreat". Autreat.com. 2013. Retrieved 17 November 2015.
  23. ↑ Solomon, Andrew (2008-05-25). "The autism rights movement". New York. Archived from the original on 27 May 2008. Retrieved 2008-05-27.
  24. ↑ Mission Statement. Archived 2013-04-21 at the Wayback Machine Autism Acceptance Project. Retrieved on 2008-11-24.
  25. ↑ Mission Statement. Aspies for Freedom. Retrieved on 2008-11-24.
  26. ↑ Autism Network International presents Autreat. (2008-05-23) AIN.
  27. ↑ "Declaration From the Autism Community That They Are a Minority Group" (Press release). PRWeb, Press Release Newswire. 2004-11-18. Retrieved 2007-11-07.
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