Tuesday, June 28, 2016

Every April, Egypt's great monuments turn blue. This woman's hard work is why.

She started the conversation almost 20 years ago, but now people are really listening.

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On April 2, the pyramids of Giza were lit up a beautiful shade of blue. Why?

Photo by David Degner/Getty Images.

The pyramids are often lit up for a number of various holidays and causes. In this case, the bright blue lights shone in honor of Autism Awareness Month — marking a relatively recent recognition of the condition in Egypt.

Thanks to Dr. Dahlia Soliman, founder of the Egyptian Autistic Society, autism is finally being talked about openly there.

For the longest time, autism was considered taboo in Egypt. In some areas, it was even called a curse.

"In the rural areas, due to lack of education, when [people saw] a child/adult spinning or doing any of the stereotypical behavior displayed by an autistic person they [thought] this child is possessed," Solimon told Upworthy.

Soliman set out to change that notion 18 years ago, and as of today, the Egyptian Autistic Society (EAS) has diagnosed thousands of children as being "on the spectrum."

Egyptian children in the Egypt Autistic Society program. Image via Egypt Autistic Society/Facebook, used with permission.

The "spectrum" refers to the wide range of behaviors/symptoms a person can exhibit when they are autistic. Unfortunately, this can also make autism difficult to diagnose, which is why, early on, more than 80% of Soliman's patients had been misdiagnosed prior to coming to her.

"Very few doctors and specialists [had] heard of it. It is not taught in our university curriculums (not even in faculty of medicine)," Soliman explained.

One of the greatest challenges Soliman faced when opening the Egypt Autistic Society was getting approval for the group's name because it included the word "autistic" and officials had no idea what it meant.

EAS' main goal is to provide "early intervention" services that are uniquely tailored to each autistic child and their parents, but keeping a program like it running isn't easy — or cheap.

The younger a child is diagnosed, the more receptive they will be to programs that can help curb behavioral and social issues caused by autism. The hope is that such training will make it easier to "mainstream" autistic children in the Egyptian eduction system.

Image via Egyptian Autistic Society/Facebook, used with permission.

This has been exceedingly difficult, especially during the Egyptian Revolution of 2011 when the administration kept changing.

Programs for people with autism are expensive for the average Egyptian family. EAS subsidizes tuition for one-third of its students, but such nonprofit work requires significant help from donors, beyond what grateful parents can give.

However, Soliman's meeting with Egyptian President Abdel Fattah el-Sisi has been instrumental in raising funds and awareness. Fattah el-Sisi has connected EAS with a number of dignitaries, some of whom have personal connections to autism.

In March 2016, Admiral Mohab Mamish, head of the Suez Canal Authority, publicly declared that his grandson has autism. For a country that not long ago thought autism was possession, that's a huge step forward in reducing the stigma.

Getting Egypt's great monuments lit up in bright blue is, strangely enough, one of the most challenging aspects of Soliman's work to destigmatize autism.

"It is actually a huge hassle!" Soliman wrote in an email. "We have to write official formal letters to each minister or authority in charge of that particular monument. Then hand deliver it to the head of that authority and then nag by phone or in person that it gets put on his desk and he signs it!"

Photo by David Degner/Getty Images.

Despite the hassle, however, she's managed to light up at least one Egyptian landmark every year since 2012.

For Autism Awareness Month in 2016, 21 landmarks, including the pyramids, blazed blue.


While the bureaucracy might be a pain, Soliman says her work with the children makes it all worth it.

Photo via Dahlia Soliman/Facebook, used with permission.

According to her blog, from age 11 on, Soliman knew she wanted to work with children with special needs.

When asked why she loves working with autistic kids, she replied, "I love children in general, but special needs children to me are slightly more special. Each tiny bit of progress is like climbing mount everest and that fulfills me."

Keeping the conversation around autism moving forward in Egypt is of utmost importance.

Photo via Egyptian Autistic Society/Facebook, used with permission.

No matter where you're from, if you've had experience with autism, Soliman and the EAS are encouraging you to share your story using the hashtag #iamthefirststep.

They hope that if more Egyptians see how prevalent autism is around the world, and how manageable it can be, pretty soon the original stigma that once influenced the country to keep people living with autism hidden away will fall away entirely.

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