The Islamic Center of America glows blue in observance of Autism Awareness Month

DEARBORN — As the facade of America’s largest mosque turned blue, dozens of community members gathered to reject the stigma associated with autism.

On the evening of April 1, parents and children rallied in front of the Islamic Center of America in honor of Autism Awareness Month.

The mosque partnered with Blue Hands United of Dearborn, an advocacy organization, to kick off the “Light it Up Blue” campaign, which aims to educate the community about the disorder.

A taboo

“Among the greatest challenges our community faces in recognizing this disorder is a lack of awareness and information,” wrote Mirvat Kadouh, chair of the Ladies of The Islamic Center of America, in a statement.

But an even greater obstacle to a proper diagnosis is a prevailing mentality among many family members of those affected that the topic is taboo.

Dr. Lobna Fakih, a pediatrician, said many Arab American parents fail to admit that their children might have the disorder. She said they often fear being labeled by family and neighbors as having handicapped kids.

Kadouh echoed Fakih’s remarks. She told The Arab American News that some families shelter their autistic kids at home, worrying that others would react negatively or fail to understand their children’s behavior.

“We need to embrace it; we need to deal with it and we need to help take care of these kids in our community,” Fakih said.

The pediatrician added that the diagnosis is not only for the child, but the entire family, as they have to cope with the distinct lifestyle.

Mona Alaouie, a founder of Blue Hands United, said autism is becoming an epidemic, increasing the chances of a person knowing someone affected by it.

In the United States, 1 in 68 people have autism, but the disorder is more prevalent in boys, affecting 1 in 42 of them, according to the Centers for Disease Control and Prevention.

Nevertheless, the campaign’s efforts are proving effective, as more community members are becoming aware of the issue, Alaouie said.

“We’re making progress,” she said. “We have more families coming out to our events who really wouldn’t before. They’re bringing children to events. They’re open about it. They’re discussing it more.”

Bedia Sleiman, a mother, said she attended the event to support the families and kids she knows who are diagnosed with autism.

Sleiman added she wants people to “realize this is an important cause. Everybody should know what it is.”

Bilal (not his real name), who has a 5-year-old autistic child, said parents of children who suffer from the disorder face similar challenges.

Before it was detected, Bilal said he and his wife had never heard of autism. He praised events like this for helping his family better understand and accept the diagnosis.

The vaccine myth

Bilal and his wife were initially reluctant to take active steps about the treatment because they believed their child’s vaccination shots had induced the autism.

The idea that vaccines are linked to autism is a popular myth in the Arab American community, including among some parents who attended the event.

This assertion was evoked by a 1998 study published in the British journal The Lancet, according to a 2014 report by the PBS science program Nova. The paper suggested a link between the measles-mumps-rubella (MMR) vaccine and autism.

The findings were completely retracted in 2010; and six years prior, almost all of its authors co-signed a partial retraction.

A 2001 British Medical Journal study further exposed unfounded and apparently falsified data.

However, with the media’s help, the scope of this misconception had already taken hold among millions of distressed parents throughout the years.

Fakih refuted the autism-vaccine link to the ICA audience. She clarified some causes for the disorder, most often caused by hereditary or fetal genetic mutations.

For example, if one twin is born with autism, the other can be up to 90 percent more predisposed to being autistic, the pediatrician told parents.

Bilal said his wife still struggles with accepting that vaccines have nothing to do with causing autism, as the child showed no signs until he was vaccinated.

“But that’s beyond the point,” he said. “We have a kid that needs help. And we’re going to deal with it and try to give him a good life that he deserves to the best of our ability.”

Fakih said many of her patients still believe the myth. That’s why she aims to work closely with them to build trust.

“Some of these moms are ready to ask and some of them are hesitant,” she said.

Early signs and symptoms

Autism is a spectrum disorder that touches individuals differently, but patients share common core symptoms, Fakih said.

Ideally, symptoms should be detected and therapy should be initiated around the age of 18 months.

The basis of the disorder is a delay in the cognitive development of affected children, says an online guide published by the UCLA Center for Autism Research & Treatment.

Early signs of autism in babies and toddlers may include:

• Lack of eye contact.

• Doesn’t smile when smiled at.

• Doesn’t respond to his or her name or to the sound of a familiar voice.

• Doesn’t follow objects visually.

• Doesn’t point or wave goodbye or use other gestures to communicate.

• Doesn’t make noises to get your attention.

• Doesn’t respond to intimacy.

•  Doesn’t reach out to be picked up.

• Doesn’t show interest in playing
with others.

Early intervention

Although there is no cure for autism, Fakih said early intervention drastically improves the ability to cope with and minimize
impairment.

Mariam Alaouie, whose 6-year-old son is autistic, said many children who have the disorder can grow up to lead normal lives.

She said her son is an active and smart kid who loves to play outdoors. He currently can communicate through pictures and fully comprehends his surroundings.

She said many parents believe there is no end result to their affected children. They often neglect them and do not interact with them enough.

“Don’t leave them alone,” she said. “Don’t leave them to sit by themselves. Play with them, talk to them. Even if they don’t reply back, they are understanding what is going on.”

She added that therapy has proven to improve their social skills and overall lives.

Bilal has some advice for parents who have discovered or are yet to acknowledge the disorder – do not wait until it’s too late.

“It’s really devastating for some parents, but don’t let that really affect your early intervention if you suspect it,” he said. “Get the diagnosis; look at it and get intervention early. It makes a big difference. Don’t think about it as a taboo. It’s not something shameful; and the more you face it, you’re going to get out of it the best for your kid.”