2016-02-16

Every April 2, from the Great Pyramid of Giza to the tallest building on the planet, the world’s most famous constructs are splashed with a glowing hue of blue in celebration of World Autism Awareness Day through the “Light It Up Blue” campaign. The campaign is designed to raise awareness and acceptance of autism around the globe. Autism is a global disorder that affects every race, class, and creed. Initiatives, like the Global Autism Public Health Initiative, work to spread the most up-to-date information to improve the quality and reach of autism services in foreign lands and move away from damaging cultural stigmas. This article includes a sampling of recent government actions, advocacy projects, and personal perspectives from people affected by autism all around the globe. In this article, we attempt to encapsulate how different countries or regions view the disorder, from a taboo “disease” to a disorder that is becoming increasingly accepted, diagnosed, and treated worldwide. We realize that a narrative or two doesn’t necessarily reflect the entire attitudes of a country or region, much in the same way one thermometer cannot accurately gauge the temperature for an entire country. However, this article is designed to give our members a glimpse of how autism is regarded abroad by highlighting different aspects of the disorder from autism communities around the globe.

Europe
Europe: In September of 2015, the European Parliament hosted an event organized by Autism-Europe, titled “Moving Forward for the Adoption of a European Strategy for Autism Europe,” with the goal of developing “a European strategy to tackle the discrimination faced by people with autism and their families across Europe.”1 The group estimates there are 5 million EU citizen affected by autism.1 The conference was a follow-up to the European Parliament’s adoption of the written declaration of autism earlier in the year.

United Kingdom: Around 700,000 people in the UK are on the autism spectrum.2 Together with their families they make up around 2.8 million people whose lives are touched by autism every single day.2 In 2014, the UK Department of Health and other government departments published Think Autism, which discusses how they will “improve the lives of people with autism, primarily through taking actions that will support local authorities, the NHS, other public services and their partners with their local implementation work.”3 A progress report to Think Autism was released in January of 2016. The report estimates that there are “over half a million people in England who have autism.”4 In the United Kingdom, the overall attitude towards diagnosis differs from here in the U.S. For example, according to the National Autistic Society, “some people prefer not to get a formal diagnosis for their child. Sometimes a parent feels that their child with make greater progress if they do not think of themselves as having a disability.”5 In the United States, health organizations and advocacy groups not only preach the importance of getting an assessment, but emphasize the importance of attaining one as quickly as possible to begin intervention. The process for attaining a diagnosis for autism in the UK begins with making an appointment with the local general practitioner (GP) to determine if your child needs a referral.5 Once approved, you will schedule a time for a formal assessment (diagnosis) and, according to NAS you “may have to wait some time before you actually go for the assessment.”5 “Quite some time” can mean 2+ years, according to NAS forums, with some waiting long bouts of time before ever even receiving a date for their assessment. However, a private evaluation can speed up this process. The National Autistic Society also has information on how to get diagnosed as an adult, with a link to a directory of autism professionals who work with adults. Once your child has received his/her diagnosis, families may be eligible for financial assistance in the form of Disability Living Allowance or Personal Independence Payment, depending on age.6 Other forms of financial assistance include “Carer’s Allowance” and “Carer’s Credit,” which helps supplement some of the income caregivers forfeit in order to care for individuals with disabilities.6

Ireland: According to an article from December 2015, the country will celebrate its first ever Irish Autism Awareness Day in conjunction with World Autism Awareness Day April 2, 2016.7 An article published February 2016 details a health system in “shambles,” with some families forced to wait 20 months before attaining a diagnosis. According to one behavioral analyst “parents are stuck in that they can’t access statutory services until they get that diagnosis. So they are sitting there lingering.”8 The article also highlights the immense pressures and stress parents are under as thousands of children go without access to treatments and intervention services.8 An August 2015 article discusses the specific proposals for Ireland’s National Disability Strategy Implementation Plan, which, according to the article, is on the cusp of being published. The plan includes the launch of an autism awareness initiative, training of professionals, educators, and special needs assistants, the implementation of a pilot project aimed at supporting young people with disabilities to help them make the transition to postsecondary education, and the development of guidelines to provide suitable housing and supports for individuals affected by autism.9 The article insists the plan is to be published in 2015, but a search on the Ireland government website indicates it has yet to be implemented.

France: Estimates in France suggest the disorder affects 1 in 150 children, according the 2013 report titled “Situation De L’Autism En France.”10 The recent Autism Plan for 2014-2017 aims to reverse the disturbing view held in France that autism disorder is a form of psychosis, treated almost exclusively through psychoanalysis.11 The plan calls for the use of educational and behavioral approaches. The main facets of the plan focus on the implementation of earliest detection and diagnosis, strengthening lifelong support systems, supports for families, continued research, and raising awareness of professionals and families for the most advanced methods for treating the disorder.12 The education of children with autism in public schools is scarce, with a 2014 article reporting that the Council of Europe, an organization with the goal of promoting human rights, democracy, and rule of law, condemned the country for failing to place 80 percent of children with autism in school.13

Germany: According Autismus Deutschland, "There are unfortunately no accurate information on the incidence of autism spectrum disorders in Germany (translation)."14 According to The Education System in the Federal Republic of Germany, children “whose development cannot be adequately assisted at mainstream schools, a range of Förderschulen [special schools] exists.”15 According to AngloInfo Berlin, “the federal states deal with pupils with special needs in slightly differing ways. In general, each state has a range of special schools covering a variety of special needs, from mental and social to physical disorders, at primary and secondary levels.”16  The pros for this system is that special education schools receive more government funding and that “separating these children and youth from the general schools of classes benefits the remaining children, who can be taught ‘unhindered’ by the disabled children.”17 However, research has shown that inclusion promotes better social and cognitive skills and that segregating students with disabilities from mainstream classrooms “'causes fear, discrimination, and prejudice towards people with disabilities' from their typically developing peers."18 However, there has recently been an attitudinal shift towards inclusion, with more states having “introduced more recent legislation regarding the education of children with special needs within mainstream educational facilities.”16 A recent study suggests the changes are yielding results as “31.4 percent of children with special needs attend a mainstream school,” which is the highest level in the country’s history.19 However, there is major discrepancy between inclusion rates among Germany’s different federal states with inclusion rates ranging from 68.5% to a lowly 24% based upon the state.19 Sadly, the study also found “there is no nationwide discussion of improving opportunities for inclusion.”19 While the schools in Germany strive to instill the values of mainstreaming into their education system, there are companies in Germany that are on the forefront of hiring individuals with autism into their workforce. In 2013, the tech-giant SAP became the first major company to begin actively recruiting employees with autism for their unique abilities, according to Autismus Deutschland.20 The initiative has had a ripple effect, with tech companies the world over hiring individuals with autism for their meticulous attention to detail and proclivity for engaging in repetitive tasks, talents which are sought after in IT fields.20

Russia: In Russia, the outlook for individuals and families affected by autism appears to be rather bleak. According to a July 2015 article titled "11 Countries with the Highest Rates of Autism in the World," Russia has no official statistics on autism prevalence due to the fact the disorder was only recognized less than a decade ago.21 A 2011 article highlighting personal stories of autism in Russia opens by stating "a diagnosis of autism is difficult for any family; in Russia, it can be shattering. With little hope of integrating into society, and a medical establishment unfit for purpose, a majority of autistic Russians are being condemned to a life in isolation."22 In a 2012 article titled "Autism in Russia: Still Catching Up" the author makes this chilling comparison to the extent of autism's acceptance in the "West" versus in Russia, "if debates in the West are already tackling the ethical issue of predicting autism before birth, in Russia even the idea of autism is still nearly taboo.”23 To illustrate the intolerance of individuals with autism in Russia, the very same article cites can example of note from the Moscow Aquarium to teachers who tried to organize a visit for a group of children with autism read: “Refused. Visitors do not like to see the disabled -- it disappoints them. It is unacceptable.”23 A 2012 documentary titled “Anton’s Right Here” chronicles the director’s personal relationship with Anton, a child growing up with autism in “a hostile Russian society.”24 According to a review, “The Russian mental health system, which seems to refuse to recognize autism as a complicated medical condition, is among the most alarming issues tackled by the documentary.”24

Australia
Australia: In 2003 it was estimated that there were 34,000 diagnoses of autism spectrum disorder in Australia, but, according to a January 2015 article, just last year the Australian Bureau of Statistics released figures pegging the estimate at 230,000 individuals.25 In September of 2015 the country established its first Biobank through the Cooperative Centre for Living with Autism. The Biobank will contain detailed biological information collected from over 1,200 families where a family member has autism. In a bit of news that parents of children with autism in the United States can undoubtedly relate to, an article that recently published in January 2016 found schools are inadequately prepared to support students with autism and that individuals with autism are often targets of bullying in school.26 In 2013, the country introduced the National Disability Insurance Scheme (NDIS) which “funds reasonable and necessary supports that help a participant reach their goals, objectives and aspirations, and to undertake activities to enable the participant’s social and economic participation.”27 The scheme, or insurance plan, has been progressively rolled out in different regions of the country, with full-coverage slated for July 2016, but the trial process has been plagued with problems, from the rollout being behind schedule to poor cost estimates resulting from increasing autism prevalence.27 Alarmingly, the lack of government action towards individuals with autism may best be summed up with the failure to mention the disorder in The Mental Health of Children and Adolescents, which was published in August 2015 by the Australian Health Department.

Latin American
Brazil: In 2010 it was estimated that there were 500,000 individuals with in Brazil.28 Alarmingly, a systematic review found that "only 93 Brazilian scientific articles on ASD were produced between 2002 and 2009; among these, only 21 articles made reference to communication skills of children with ASD and their interaction with their families."28  However, in 2012, “after intensive lobbying by parent activist associations,” a federal law recognized autism as a “disability for all legal purposes” in Brazil as a means of guaranteeing social benefits and to “take the responsibility for treatment away from the public mental health network of services.”29  In 2013 the Brazilian Ministry of Health published "Guidelines for the Care and Rehabilitation of Individuals with ASD," in order to guide health professionals and family members to recognize the signs of autism in children as young as 3 years of age. This type of legislation and recommendations from the Ministry of Health exemplify the progressive attitudes toward the disorder as autism was viewed as a form of psychosis in the country only until just recently.30

Mexico: A study published earlier this year in the Journal of Autism and Developmental Disorders suggests that the prevalence rate of autism in Mexico is 1 in 115.  At just under 1 percent, the estimate approximately mirrors the "1 in 100" figure for Hispanic children diagnosed with autism in the United States.31 Researchers used methods similar to the CDC's ADDM network to record data on 8-year-olds attending special education classes in the city of Leon. Researchers also utilized the direct survey method pilot tested by a study in South Korea in 2011, which involved conducting in-person autism screenings of students in general classrooms, followed by a full evaluation for autism.31 The combination of these two methods yielded the estimated prevalence rate, found that just over 30 percent of the children identified as having autism also had intellectual disability, and also found the similar 4 to 1 boy to girl ratio that's been seen in virtually prevalence studies to date.31 To celebrate autism awareness in April of 2015, the autism awareness campaign “Illuminemos de Azul por Autismo” (Light It Up Blue) created an autism awareness video starring former Mexican soccer star Jaime Lozano and his wife, whose son Luca was recently diagnosed with autism.32 The video went viral and was broadcast on several national channels. The message throughout this campaign was that of tolerance and inclusion for those on the spectrum.32 Additionally, Autism Speaks and Instituto Slim de la Salud signed a collaboration agreement to translate all the material that Autism Speaks has to be used by any organization in Mexico and Latin America, an initiative that will provide a lot of support and resource to families. Finally, the cap off the month, on April 30th, Enrique Peña Nieto, President of Mexico, signed the “Ley General de Autismo” (Autism Law), which will protect and recognize the rights and fundamental needs of persons with autism in Mexico.32

Asia
China: The country that boasts a population of about 1.3 billion houses 13 million children and adults affected by autism, and, according the China Disabled People’s Federation, autism is the nation’s most prevalent brain development disorder.33 The 10k Genome Project, which helps researchers delve in the genetic underpinnings of autism, is carried out at BGI, formerly Beijing Genomics Institute.34 In a May article published in the Wall Street Journal, Yanhui Liao, president of the Schzhen Autism Society, was quoted as saying “the [autism] services that do exist in China are largely for children up to six years old, and there are no services for adults.”35 In China, children with disabilities are routinely turned away by school due to the fact that they cannot be accommodated by staff or curriculum.33 There seems to be hundreds of privately run treatment centers, oftentimes by parents, which operate outside of government oversight. According to an Autism Speaks article, these treatment centers must deal with the “overflowing demand [that] produces long waiting lists and pushes price out of reach for most. Some centers – such as Beijing Stars and Rain – are rightly famous for teaching techniques and results. Others appear more geared toward earning a fast buck.”33 The article implores government agencies to step in and oversee these types of education/treatment centers to ensure the quality of instruction is maintained, as well as to guard against price gouging.33 The most recent and somewhat controversial autism related news to come out of China was the announcement of researchers genetically-altering monkeys so that they develop an autism-like disorder. These "transgenic" monkeys could be a good model for studying human brain disorders, since their brain circuitry is much closer to that of humans.36 Specifically, scientists attempted to mimic Rett Syndrome, a rare genetic disorder in which 90% of patients have a mutation in a gene MeCP2, which codes for a protein involved in regulating how DNA gets processed to make other proteins.365 Duplicate copies of this gene produce an autism-like disorder known as MeCP2 duplication syndrome. The study also discusses how the research was carried out and discusses some of the limitations with this type of research, specifically the grand cost.

Pakistan: Just this year, Autism Speaks announced a partnership with Pakistan's Human Development Research Foundation and Grand Challenges Canada to introduce a new program to assist families of children with autism and intellectual disabilities.37 The program integrates the Parent Skills Training Program, which was developed by Autism Speaks and pilot tested with the World Health Organization (WHO), the Family Networks for Kids project, piloted by the Human Development Research Foundation and is funded by Grand Challenges Canada.37 The Parent Skills Training program educates parents and other caregivers in the region to work with children who have autism in "practical, culturally sensitive ways using strategies that research has shown to be effective." According to Autism Speaks, "developmental disorders including autism and intellectual disabilities affect an estimated 13.2 million Pakistani children - almost all of them untreated due to poor awareness, stigma and lack of specialist services outside urban areas."38 The Family Networks for Kids Project trains family members of individuals with autism to recognize and help with the disorder by creating sustained networks "that task-share, support each other, and link with other agencies to maximize their impact."38

Bangladesh: The “Situation Analysis on Children with Disabilities in Bangaladesh,” which was published in June 2014, states that “data on children with disabilities in Bangladesh are limited and often not reliable, or underestimate the prevalence due to varying definitions of disabilities and data collection processes. The estimate of people with disabilities ranges from 1.4 percent to 9 per cent.”40 According to a research article “the government of Bangladesh has shown strong political commitment in reducing the stigma related to autism and its management.”40 Through education in school and through mainstream media, in this case in the form of a popular cartoon titled “Meena,” to raise autism awareness.40 The government has also mandated that autism was to be included in the primary education curriculum, developed a strategic action plan for children with special needs under the umbrella of inclusive education, legislated that two percent of seats for admission in private sectors are reserved for children with autism, and established the National Autism Academy under the Ministry of Education “to conduct substantial research to develop culturally sensitive, cost-effective, and intervention based curriculum and contents.”40

India: In a country where traditions and culture are so entrenched in the day-to-day aspects of living, progress towards removing the taboo and stigma associated with autism in India has been slow, but visible. According to an article in the Time of India, the government of India “only recognized the disorder in 2011, till 1980s, there were reports Autism didn’t exist in India.”41 The first prevalence survey in India in 2013, led by the International Clinical Epidemiology Network Trust, found there to be more than 10 million children diagnosed with autism, or a rate of “about 1 to 1.5 percent autistic children between ages two and nine in India.”42 This places the prevalence rate at 1 in 66.42 In February 2013, the inaugural meeting of the South Asian Autism Network, consisting of India, Bangladesh, Thailand, Bhutan, Myanmar, Nepal, Sri Lanka, and Timor-Leste, commenced in New Delhi, India, where they unanimously adopted a charter, the goals of which can be read here. Autism has found its way into the pop culture landscape of India, with Bollywood producing several movies featuring characters with autism, including the 2012 release of “Barfi” in which the female lead has autism.43 Still, according to Action for Autism, obtaining an accurate diagnosis for autism is one of the major difficulties faced by parents in India.44 Although, the process is improving in major cities as more pediatricians are becoming familiar with the disorder.44

Middle East
Israel: According to a 2012 article in Spectrum, the prevalence rate for Israel was determined to be 48 out of 10,000 children in 2012.45 In August of 2015, the Hebrew University and Hadassah Medical Center announced the establishment of the first interdisciplinary university-based autism center in the Middle East. The NIS 300 million (or about $75 million in U.S. $) endeavor will “bring together cutting-edge research, clinical services, state of the art training, and education for professionals and parents in the community.”46 According to one professor at HU’s Faculty of Medicine, “the center’s direct ties to the ASD global community will better inform research initiatives and lead to better clinical practice, public programming and policies in support of those who deal with the debilitating disorder.”47 A high-tech Israeli military unit has recently begun recruiting individuals with autism to harness their capacities for visual thinking and attention to detail, both of which are critical “to the highly specialized task of aerial analysis.”48 According to an article in The Atlantic, “the relationship is a mutually beneficial one. For these young people, the unit is opportunity to participate in a part of Israeli life that might otherwise be closed to them. And for the military, it’s an opportunity to harness the unique skill sets that often come with autism.”48 The Israeli government practices conscription, or drafting, all Israeli citizens over the age of 18. The normal length of compulsory service is currently three years for and two years for women, although there are a number of exemptions.

United Arab Emirates: According to a January 2016 article in The National, the last recorded prevalence rate for autism in the UAE was 58 cases per 10,000 in 2008, but a study is currently underway to determine the autism prevalence of Abu Dhabi.49 In 2015, the Emirates Autism Society launched the “In the Footsteps of Zayed 2” initiative, which focuses on supporting orphans “through the principle of brotherly cooperation.”50 In the initiative, orphans acted as a “big brother” to an individual with autism as they cooperated together to complete humanitarian work during this past Ramadan. The initiative promotes the noble principles of humanitarianism by providing the teams opportunities to visit children in hospitals to give them gifts.  Dr. Khawla Salem Al Saadi, Chairman of the Emirates Autism Society, stated “The initiative encourages these children by highlighting their abilities to give and share with their brothers in society; and also spreads awareness about autism through these visits – which serves the desired educational goals.”50 A light-hearted article, what some might call “puff piece” in the states, released in May of 2015 discusses Gulf Autism Centre’s annual sports day at Al Jazira. What is really intriguing about this article is the mention of how the disorder is becoming less “taboo,” despite autism remaining a “sensitive subject” in much of the Arab world. According to Ahmed Al Mazrouie, vice president of the centre in Abu Dhabi, “At the beginning [parents] used to be conservative, not giving their names or not allowing pictures to be taken. Now they are happy to have their photos taken or be filmed on video. They are so proud their kids have improved.”51 The sports program is designed to give children who receive treatment a break from teaching in training to engage in socialization and playtime.

Africa
Egypt: The Egyptian Autistic Society proudly boasts the inclusion of the Great Pyramid as a part of the “Light It Up Blue” campaign, but several resources paint a bleak outlook towards the disorder in the country. A 2014 article titled “Tackling Autism in the Middle East,” claims there are no universities in Egypt that teach autism.52 Dalia Soliman, founder and president of The Egyptian Autistic Society believes the population of individuals with autism is more than one million and states “there is no legal recognition of autism – that means no military exemptions, no legal right for use to be in school, and no legal backup for us.”52 Due to this lack of awareness and misunderstanding of the disorder, many parents struggle with attaining a diagnosis or, oftentimes, their children were misdiagnosed as having another condition.53 Moreover, Egyptians don’t have the luxury of legislation such as IDEA, which means an entirely different hurdle in attending school. According to a 2013 article, “The Ministry of Education requires special needs children to undergo an IQ test in order to be allowed to attend mainstream schools. The tests are oral, which means that a child with autism, who struggles to communicate, will inevitably fail.”53 The parents of those children who are granted access to mainstream education must pay a fee for the extra services their children require.53 Highlighting the lack of awareness in Egypt is a February 2012 article discussing how autism is not listed as a disability on ID cards, which means those with the disorder are not automatically exempt from military service duties and national educational requirements.54

Nigeria: In general, the attitude towards autism in Nigeria and surrounding countries is that of misunderstanding, and even fear. As an example, a March 2015 article on the disorder in the region appeared in the Nigerian newspaper The Sun has an entire section titled “Not Spiritual Attack,” in which the opening line makes clear “autism is not caused by spiritual attack.”55 A 2010 personal account from psychologist Okey-Martins Nwokolo further illuminates this attitude, “In many parts of Nigeria today, particularly in rural areas, people with autism are thought to be possessed by evil.”56 He describes the level of autism awareness in the country as “pathetically low.”56 To illustrate how the people of Nigeria can welcome treatment while still maintaining their devotion, Julia Ejiogu, Founder and CEO of Autism Care and Support Initiative, addresses the matter in an October 2015 interview by stating, “I believe in spiritual power and higher powers…[but] if you have prayed and fasted and you still see things happening, then it is no challenge to your faith. There is wisdom in seeking professional evaluation and help. There is nothing wrong with praying and fasting as well as getting professional help.”57 She also paints a dismal picture of autism in the region, suggesting there are huge gaps resources and that “most mothers takes their children to the hospital only during immunization or when that child is running temperature,” as oppose to regular visits for developmental evaluations.57  In April 2015, during a celebration of World Autism Awareness Day in Nigeria, U.S. Ambassador James Entwhistle revealed there is an estimated 200,000 to 380,000 people in Nigeria affected by autism, which would rank it as the third most common childhood disorder in the country.58 In January 2015, a bill “to ensure full integration of persons with disabilities” was sent to then President Goodluck Jonathan’s desk, but the bill was not made into law into law before he left office.59 However, the bill could still be signed into law by current President Muhammadu Buhari.

South Africa: In a recent article about World Autism Day, the South African government estimates that approximately 2% of their population is affected by ASD, although the government itself has failed to conduct any reliable prevalence studies.60 A 2013 article which appeared in The South African Medical Journal details that there are just 9 autism tailored schools in the entire country, leaving “an estimated 135,000 autistic children” without specialized education.61 With regards to students with disabilities, an August 2015 report titled “Complicit in Exclusion” argues that schools often make “arbitrary and unchecked” decisions as to who can enroll, do not grant the same access to material, resources, and curriculum for students with disabilities, force parents to pay extra fees, expose students to unlawful and abusive practices, and provide a lack of quality education and a lack of preparation for life after basic education.63 The report includes suggestions for government intervention to reverse these trends. In an example of true progress, a January 2016 article details the opening of South Africa’s “First free school for autistic children.”63 This demonstrates that the actions of advocacy groups and individuals affected by disability are being felt by those who can affect real change in the region.

Conclusion
It seems that many of the issues that cause plight within the autism community in the United States, including commonly held myths and misconceptions, are visible around the world oftentimes on a much greater, and more devastating, scale. In many ways the United States is ahead of the curve in terms of providing for the autism community, but even here there is a long way to go. While compiling the resources for this article, we noticed a global pattern of change at the highest levels being initiated by advocacy groups, autism organizations, and individuals on the spectrum. Real change trends upwards. We also recognize another positive global trend in raising of awareness of the disorder. Whether it’s educating university programs on the best treatment interventions or instilling the value of early diagnosis in rural areas, the understanding and recognition of the disorder appears to be emerging in the most impoverished of regions. Below are some global autism organizations for those who wish to learn more about what is being done to further autism awareness and what autism is like across the globe.

Global Autism Project

Global Autism Collaboration

Autism Around the Globe

Global Autism Public Health (GAPH) Initiative

References:
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40.   Soron TR (2015)

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