Taking Action as Advocacy of Children with Autism
While people with autism may have the tendency not to make eye contact with you, chances are today, you have either seen or met someone with this neurodevelopment 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, by the way, 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 neurodevelopment 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 have celebrated over a decade of World Autism Awareness Day (WAAD) on every second day of April beginning in 2008— successfully proposed in 2007 by then United Nations representative of Qatar and incumbent Chairperson of Qatar Foundation, HH Sheikha Moza 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. Closer to home of Her Highness — i.e. Qatar — the latest ongoing efforts on prevalence rate of children with autism is at 1 in 87. While these rates are claimed to be underestimates, 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.
While these rates are claimed to be underestimates, 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.
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. On April 10, 2017, Julia made her 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 some children with autism to utilize their talents. Exceptional levels of photographic memory, musical abilities, and mental arithmetic calculations are gifts some children with autism possess. It is important to note that not all children with autism have such exceptional talents, but all of them have their own unique strengths. Sometimes though, we can only unearth these strengths 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.
It is important to note that not all children with autism have such exceptional talents, but all of them have their own unique strengths.
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.
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. One such initiative by OpenIDEO was a challenge to design solutions in reducing stigma and increase opportunities for people with disabilities that eventually saw six winners receiving seed funding from the UK Department for International Development and design support from IDEO.org. You may read up on the updates ofhow these ideas have evolved and made an impact in their respective communities.
Yes, WAAD is a reminder that children with autism matter, but not just for a day. They matter 365 days a year. “Light it up blue” throughout the year and ensure your light-bulb moments transpire into tangible actions in achieving a higher quality of life for the autism community.
Original version of this piece was published at www.wise-qatar.org.
