World Autism Awareness Day
From ASEAN’s Perspective
First and foremost, we would like to extend our gratitude to Encik Adli Yahya, the founder of the Autism Cafe Project and a parent of an autistic child for his insightful inputs and utmost dedication towards the independence of the autistic community in Malaysia. Do visit the Autism Cafe Project, at @Autismcafeproject on Facebook to know more!
What is Autism?
“I am different, not less.” - Dr Temple Grandin, a scientist and an activist with autism.
Perhaps that is the most accurate description of people with Autism Spectrum Disorder (ASD). Uniquely, autistic people see, hear and feel things differently from other people. Just as Stuart Duncan said, “Autism is not a disability, it’s a different ability.” And that is what makes it one of the most misunderstood human conditions.
In this article, we would be discussing Autism Spectrum Disorder (ASD) by giving an insight on how it looks in Malaysia and ASEAN, our response and ways to move forward.
ASD is regarded as a neurodevelopmental disorder which impacts a person’s social, emotional, communication and behavior. It refers to various conditions such as repetitive behavior, problems in speech, sensory and non-verbal communication. Sadly, there are no formal scientific studies on the prevalence of ASD in Malaysia as a whole. However, few studies and surveys conducted by the Ministry of Health suggested that the prevalence of ASD amongst children between the age of 18 to 26 months is about 1 in 625 children at the rate of 1.6 per 1000. The exact number could be higher because most cases go undetected. The causes which lead to such conditions are not exhaustive and may depend on environmental, biological and genetic factors.
The United Nations General Assembly had declared the 2nd of April to be the World Autism Awareness Day which is held annually at the international level to celebrate autistic people along with bringing people all over the globe together through research, awareness and acceptance of the autistic community.
ASD & the Barriers Through the Eyes of ASEAN
Being different always opens doors to stigmas. In an interview with Encik Adli Yahya, the founder of the Autism Cafe Project and a parent to an autistic child, he said that the biggest challenge in raising a child with ASD is having to accept that your child is different. The public tends to misunderstand their behavior when they are actually trying to express themselves in their own way.
One of the main issues associated with ASD is the lack of public’s awareness. As mentioned above, there are currently no formal data collection or epidemiological study at the national level and ASEAN to identify the accurate number of autistic individuals. Although there have been surveys conducted on a smaller scale, it is still not enough as the majority of the public is still in the dark of what ASD actually looks like which leads cases to go undetected. This would undeniably be hard for policymakers to craft policies which cater to this community.
Another issue associated with ASD in ASEAN is the lack of inclusivity of the autistic community in the workforce and educational institutions. True, there are schools for special needs but the question is, how far does it include people with ASD? A report by the Institute for Democracy and Economic Affairs (IDEAS) states that special needs schools particularly in Malaysia generally cater for individuals with physical disabilities and not neurodevelopmental disabilities.
Encik Adli Yahya said that his autistic son’s ability is not compatible with his school’s learning structure which indicates that the educational system for the special needs particularly for people with ASD in Malaysia and ASEAN are still lacking at some point. Inclusive education if it is implemented poorly, would be destructive in a long-term perspective.
The Philippines’s advocacy groups have advocated for the placement of the autistic community in the workforce. It is a long battle but now businesses there are beginning to include people with diagnosed ASD in their workplace. This is the initiative by the Autism Society of the Philippines to promote “autism-OK Philippines” for the inclusivity of the autistic community.
This goes to show that such inclusivity needs to be pushed forward and advocated continuously so that the autistic community can stand up for themselves just like what the Autism Society of the Philippines have been doing for the past years. They need to be understood and trained accordingly with proper care, training and guidance by creating an autism-friendly environment which promotes inclusivity of such communities. If we do not remove the barriers for them, then who will?
ASEAN Response On Autism - Inclusive or Dismantled?
As mentioned above, autism advocacy has been very loud over the years, but are the noises garnered equates to addressing the issue on the ground? The answer depends; let’s thoroughly look on the prospects from a regional overview.
Autism advocacy to address ASD has been progressing over the past decade. Although not being debated under the ASEAN council, leaders of ASEAN countries have gathered to put things into action, namely strategically provide comprehensive and coordinated efforts to manage ASD in the chamber of the World Health Organization in 2014. Shortly after in April 2016, ASEAN secretariat pushed the agenda of promoting an autism-friendly community through increment of engagements to be made available for those who are autistic to be able to engage with others not limited to sports, education and employment but interdisciplinary too.
To establish regional support and further integration of people with autism within ASEAN which is approximately 6 million people, ASEAN then launched the Autism Mapping project by the end of 2018 which shows that the ‘talk’ has been ‘walked’ after the signing of Thimphu Declaration, to cater needs of people with autism and their families to be inclusive into the national health and socioeconomic development plans in 2017.
On top of resolutions and policymaking in the regional level, ASEAN as an institution have extend their commitments for the cause by recognizing achievements made by fellow ASEAN individuals and corporations - one of it being Ms. Erlinda Uy Koe from the Philippines in 2018 where she acts upon the Chair Emeritus of Autism Society Philippines (ASP) that has empowered persons with autism in the Philippines but also to the entire region.
Malaysia’s Way of Moving Forward
The status quo on the grounds in Malaysia might not be as vibrant as the efforts initiated from the regional perspective. Despite the existence of Persons With Disabilities Act 2008 (derived from United Nations Convention on Rights of Persons with Disabilities 2008), the flowers of the trees have yet to blossom; there are minimal initiatives recorded to promote inclusivity and representation from persons with disabilities (OKU) especially autism. More often than not, most of the policies have not been addressed to empower people with autism but rather generalize it under the umbrella term of people with disabilities.
Why is this action damaging? As autism was categorized in such a way, they received less attention and were often disregarded. In order to enjoy more rights, it must be done in a manner where they are required to register as an OKU member - failure of such registration creates further disparity in terms of being inclusive within the community. Albeit such concerns, many non-governmental organizations have been founded in order to tackle the prominent issues, mainly in providing financial and moral assistance and accessible vocational programmes.
However, these organizations are trying their best to survive another day to cater to the needs of approximately 10,000 children born with autism in Malaysia every single year - clearly indicates, there should be more progressive changes.
Thus, the government of the day should facilitate the issues to empower the ASD community as they are a part of the society. Meaning to say, every policy that is formulated must be inclusive of the community themselves on the capacity of outreach engagement, market research, facilitating programmes and roundtable discussions to truly grasp the reality that the community is facing and elevating them as much as we can.
Involvement within the spectrum of the citizens itself is equally important - lend a hand whenever we can, be careful with the words we speak and be mindful of other communities; this truly changes the situation slowly but surely. This includes creating safe and healthy discourses about the importance of inclusivity and understanding their struggles, especially with people with autism to combat the stigma and lack of general knowledge regarding the matter be it in urban or rural areas.
Understanding that ASD should be taken seriously, every stakeholders be it from top-down or bottom-up approaches plays a significant role in pushing for the betterment for persons with autism; they should be empowered and be included as at the end of the day, are they not similar to us - citizens of the country?
CREDITS:
Writers: Syifa Irdina and Elisa Shafiqah
Researchers: Fatin Nur Syafiqah, Norafiqah Syrene, Nur Marsya Amani, Sofiya Qistina and Muhammad Aiman
Editors: Fatin Nur Syafiqah and Awangku Ariff Radhi
REFERENCES:
United Nations. (n.d.). World Autism Awareness Day - EN. Retrieved March 31, 2021, from https://www.un.org/en/observances/autism-day
The Stigma of Autism: When All Eyes Are Upon You | Interactive Autism Network. (2015, January 15). Interactive Autism Network. https://iancommunity.org/ssc/autism-stigma
Thomas, J. (2019, March 5). What is Southeast Asia doing about autism? The ASEAN Post. https://theaseanpost.com/article/what-southeast-asia-doing-about-autism
Adel, R. (2018, April 3). Persons with autism in the workplace now a “norm.” Interaksyon. https://interaksyon.philstar.com/breaking-news/2018/04/03/123695/persons-with-autism-in-the-workplace-now-a-norm/
Ismail., R., Bahari., F., Abdul Rahim., N., Abdullah, S., Chua, B. and Mutang, J., 2016. Challenges and problems of school transition to workplace for students with Autism Spectrum Disorder (ASD) in ethnically diverse families. Asia Pacific Institute of Advanced Research (APIAR).
World Health Organization. (2014). Progress reports on selected Regional Committee resolutions: Comprehensive and coordinated efforts for the management of autism spectrum disorders (ASD) and developmental disabilities (SEA/RC65/R8). Retrieved from https://apps.who.int/iris/bitstream/handle/10665/129384/RC67-22%20Agenda%209.8%20-Management%20of%20Autism.pdf?sequence=1&isAllowed=y
ASEAN. (2016). ASEAN to promote autism-friendly community. Retrieved from https://asean.org/asean-to-promote-autism-friendly-community/
ASEAN. (2018). ASEAN launches Autism Mapping Project. Retrieved from https://asean.org/asean-launches-autism-mapping-project/
ASEAN. (2018). Regional Advocate for Persons-With-Autism Wins Inaugural ASEAN Prize. Retrieved from https://asean.org/regional-advocate-persons-autism-wins-inaugural-asean-prize/