Taking Action as Advocacy of Children with Autism

Special Focus : Autism: The Case for Quality Education
Learning Ecosystems and Leadership March 31, 2017

While people with autism often have the tendency not to make eye contact with you, chances are today, you have either seen or met someone with this neurodevelopmental condition, or at least know about it. This is partly due to the voices and the daily grind of the caregivers, educators and service providers of people with autism who make about one percent of the world population—that is about 75 million people with autism worldwide. The autism spectrum represents an umbrella of related neurodevelopmental conditions, each with varying degrees of symptoms, including conditions such as Asperger Syndrome. In general, autism affects a person’s ability to socialize and communicate, causes repetitive body movement and over-fixation on certain thoughts and routines.

As we arrive at the tenth year of World Autism Awareness Day (WAAD) this April—successfully proposed in 2007 by then United Nations representative of Qatar and incumbent Chairperson of Qatar Foundation, HH Sheikha Mozah Bint Nasser Al-Missned—we can be proud of the extent these awareness efforts have reached. Improved and broadened diagnosis of autism have contributed to its prevalence increase in some parts of the world. In the United States, it is estimated at 1 in 88 children in 2012 before another study in 2014 estimated it at 1 in 68 children. While this is claimed to be an underestimate, the overall surge globally in recent years is enough evidence to suggest that raising awareness has some success. What I believe is more critical is to build on this by mobilizing any amount of change to effect policies and practices benefiting this marginalized group. Perhaps, there is no better time than today for us to play a bigger part in acting upon our advocacy for children with autism. With that, below I highlight the reasons we need to walk the talk now and how a few of us have taken the lead.

Parents and siblings of children with autism have often expressed about the niggling stigma and how it exacerbates society’s ability to understand the things they go through every day. Lately, one of the things I have seen to reduce this stigma is the introduction of Julia in a digital storybook as part of the Sesame Street and Autism: See Amazing in All Children initiative in October 2015. The creation of Julia, a muppet with autism, is hoped to educate these families and the public on best practices for daily stressful situations such as having a meal, playing social games and going to bed. This April 10, Julia will debut on Sesame Street on the episode, “Meet Julia”, airing on HBO. Imagine how heartening it is for these families to know that an established television series recognizes the responsibility and its concomitant worries they carry every day in their lives.

Demands of the rapidly changing world not only affects our upskilling endeavours, but also provides more than ever, the opportunities for children with autism to utilize their talents. Exceptional levels of photographic memory, musical abilities, and mental arithmetic calculations are some of the gifts children with autism possess. Sometimes though, we can only unearth these gems through unconventional employment methods. For instance, Microsoft launched their Autism Hiring Program in May 2015, inviting candidates for a two-week stint on campus to work on coding projects and meet managers. The aim is to create a work environment and hiring process that is apt for autistic people’s style of thinking and communicating. Doing so not only ameliorates the employment rate of people with autism but promotes diverse creativity, analytical skills and perspectives, thus, having a workforce that better resembles the needs of the population.

Lastly, unlike most neurodevelopmental conditions, it is still unknown what causes autism. While myths such as vaccinations and ‘refrigerator parents’ have been debunked, the exact cause remains a mystery. Nevertheless, scientists are constantly investigating this holy grail and some may have come closer than others. A Duke-NUS team has found that mutations of the gene, CDH13, has a strong effect in causing autism. We need to continue this quest until the cause is confirmed. Knowing the genes behind autism will allow us to detect autism earlier and develop specific teaching and learning practices to inhibit the effects of autism. Given the right support such as ones I have discussed here, perhaps one day it is a person with autism who may discover the specific cause of the condition he/she has.

I believe there are many other ways to act on our advocacy in support of children with autism. To help you fight the inertia, one of the platforms that you can leverage immediately is OpenIDEO where there is currently a challenge to design solutions in reducing stigma and increase opportunities for people with disabilities. Go for it and effect change in policies and practices! On WAAD, do not just light it up blue worldwide for the autism community, ensure your light-bulb moments transpire too.

A research study examining the current status of education offered to children with autism in Qatar was presented as part of the WISE Research Series at the 2017 Summit in November. It aims to identify and recommend actionable policies and practices for improving access and quality of education for children with autism.