Wednesday, May 8, 2013

Autism Is Not Just An American Thing

Emily Willingham
emilywillinghamphd.com

You’ve heard of autism, right? Thanks to ubiquitous blue puzzle pieces, TV shows and movies, and daily headlines in English-language news media, a lot of people in the United States have some awareness about autism, even if it’s a caricatured version presented to gain donations, viewers, or readers. In fact, in the US, many autistic people and their allies have sought to move on from awareness and talk more about acceptance.

In non-USian parts of the world, though, autism doesn’t necessarily get this level of attention, much less acceptance, despite the fact that autistic people are everywhere. One of the largest epidemiological studies of autism identified it in 2.64%% of South Korean schoolchildren, and anecdotal assertions to the contrary, autism does exist in countries like Cambodia. Autistic people also live in Yemen, where a lack of awareness can seriously affect outcomes. As Yemeni mother Fam Um Ahmed said in an interview with Sadeq Al-Wesabi, writing for the Yemen Times:
Although I’m educated, I had no idea about autism, and what I’d heard about it was that it’s a horrible and destroying thing. I didn’t realize at that time that my child was suffering from autism until the doctor told me,” she said.

“Autism is not an easy thing for parents. It’s a shocking  thing,” she added. 
Um Ahmed advises mothers to take action if they notice their child is very introverted and doesn’t seem to be able to keep up with others in their age group. 
“They shouldn’t listen to their friends or neighbors who advise them not to take their children to the autism center at an early age,” she said, adding that there is a plethora of information on the Internet that can guide parents through the often tricky situation of determining if their child needs special care. 
Currently, Um Ahmed is satisfied with her child’s progress.
What awareness Um Ahmed did have about autism was as something “horrible and destroying,” a widely disseminated caricature that overshadowed any possibility she would recognize her own child’s symptoms of the condition. Part of autism awareness anywhere should include a more nuanced discussion of what autism looks like so that parents and clinicians can recognize early signs instead of looking only for the manifestations of a monster.

This recognition of early signs is important to effective therapy. According to the article, Yemen lacks specialists who know how to implement the latest in autism interventions. In addition, the article notes, the media coverage that can lead to topical burnout in the US is lacking in Yemen, contributing to the absence of awareness. That, in turn, has real consequences for autistic people, says Seham Al-Sadmi, director of the only facility in Yemen for young autistic people:

Due to this lapse in expertise and awareness of this mental condition, parents are often in the dark and without guidance in diagnosing and caring for their autistic child. They can also be in a state of denial regarding their child’s circumstances, according to Al-Sadmi.

“The majority of the cases that are brought to the center are in very developed stages. Some parents consider children with autism mad,” she said. “Most of the parents bring their children at an age of 12 or 13. It’s very difficult at these ages to provide them with rehabilitation programs and training.”
Studies suggest that interventions at a very early age can smooth some of the aspects of autism that interfere with a person’s quality of life. But the lack of awareness in Yemen coupled with what Al-Sadmi calls “government apathy” means limited access to such interventions for autistic children in Yemen. The single facility in the country currently exists thanks to a mix of government and international funding, but that doesn’t help families who live too far away and can’t afford to travel to the center for help.

Yemen doesn’t seem to have a large, well-funded national organization to litter the country with blue puzzle pieces and ask for your donation at a Toys ‘R’ Us checkout. Its media don’t appear to carry the obsession that the US media have with autism–in fact, a search on “autism” at the Yemen Times turned up three articles. A search at NBC.com? That gets you 721 hits. In the US, that level of coverage starts to become background noise. In Yemen, awareness -- or a lack of it -- really does matter.

It’s not a huge shock that we in the United States tend to be US-centric when we talk about anything–politics, religion, global climate change, autism. But as we spend our time and energy here arguing the finer points of autism causation, writing alarmist stories about every scientific study that mentions autism -- whether it studied it or not -- and engaging in internecine battles in the autism community, autistic people walk around all parts of the globe, needing resources and support and useful interventions as much -- or even more -- than autistics in the United States. Perhaps it’s time more of us became aware of that.



Previously published at Forbes.com.