Beyond the Spectrum: Understanding Autism

The world lights up blue for World Autism Awareness Day, a gesture that has grown in visibility even as the condition itself remains widely misunderstood. This year, the UN marks the occasion under the theme "Advancing Neurodiversity and the UN Sustainable Development Goals," a recognition that inclusion is not a charity gesture but a structural necessity.

But before policy, there is understanding. And understanding begins with a simple, honest description of what autism is, one that Zeina Boustany, Director of the Lebanese Autism Society (LAS), offers without jargon. She tells The Beiruter, "Autism, basically, is all about behavior. You notice they are different, have their own world. They respond in their own way, sometimes paying attention differently, depending on the environment."

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition defined by persistent differences in social communication and interaction, alongside restricted or repetitive patterns of behavior and interest. The word "spectrum" is essential: it encompasses a vast range of presentations, from children who integrate fully into mainstream schools to those who require round-the-clock support throughout their lives. Crucially, as Boustany points out, autism is not visible on the surface. "If you see a child with autism, they can appear like any other child. Physically, everything is normal. The difference is in their behavior."

The numbers: A global and Lebanese picture

Autism is far more common than many people realize, and the data suggests it is still being significantly underreported, particularly in the Arab world.

According to the World Health Organization (2024), an estimated 1 in 100 children worldwide are on the autism spectrum. In the United States, that number rises sharply to 1 in 31 children, the highest recorded rate to date (CDC, 2025), reflecting both increased awareness and improved diagnosis. Globally, boys are diagnosed at a rate four times higher than girls, though experts warn this gap is partly due to underdiagnosis in girls, who often mask symptoms.

In Lebanon, the data is sparse but indicative. A national Lebanese cross-sectional study estimated the prevalence of ASD at approximately 148 per 10,000 children aged 16 to 48 months,  a figure comparable to CDC estimates, and notably higher than elsewhere in the Arab region. One study noted that caregiver reluctance to participate in research drove wide variance in estimates, itself a signal of the stigma that surrounds the condition.

A 2022 national study assessing autism knowledge among 500 Lebanese adults found a mean score of just 43.1%, classified as poor, with particularly weak understanding of ASD's prevalence, causes, and diagnostic process. These are not just academic gaps. They translate directly into delayed identification, missed early intervention, and children going unsupported during the most critical developmental windows.

Inside the daily reality: Learning from the children

Boustany came to her role with openness, and that, she says, turned out to be the most important qualification. She explains, "Every day was a new experience. You learn from them. They teach you how to interact with them, how to observe their behaviors, their lives, their changes."

What she describes is a kind of hyperattentive care, a daily calibration to each child's signals, moods, and needs. Sleep, environment, routine: any disruption can register in behavior, and the trained eye learns to read these shifts immediately.

Some children may appear calm, but if they are a bit tired or upset, any small change affects them. You have to notice immediately what's happening, if a child didn't sleep well or is scared or upset, you see it in the afternoon or next morning.

The LAS operates three branches in Lebanon, accepting children from age three through to adulthood, some students are in their forties. Each branch reflects a different point on the spectrum. At the Sacré-Coeur branch in Gemmayze, children with mild autism are integrated into regular classrooms alongside their peers. A second branch serves children with medium to severe autism, providing specialized behavioral, speech, and psychological therapies. Two further school-integration projects recently launched at Saint Grégoire and Notre-Dame-de-Grâce.

Abilities beyond the diagnosis

If there is one message Boustany returns to again and again, it is this: a diagnosis is not a ceiling. Among the students at LAS are artists whose work is exhibited locally and internationally, mathematicians, aspiring chefs, and graduates now integrated into working life.

Some students have unique talents, like drawing. We have four artists among our students, they produce work beyond what most families could. We organize exhibitions locally and abroad to showcase their work.

The LAS runs a sister platform called Creative Call, dedicated to students who draw. Their work is sold both locally and internationally, as genuine art with a market and an audience. Boustany says, "Others excel in math, or aspire to be chefs, marketers, or in management. Some of our students have graduated and integrated successfully into society."

The awareness gap

Lebanese schools, Boustany says, are increasingly better prepared than they used to be. Families no longer hide their children as they once did. Awareness is growing. But growing is not the same as grown. "Families understand autism better, and they don't hide their children anymore. Schools are increasingly prepared to accommodate children with special needs, whether autism or learning difficulties."

"It's very important to have awareness campaigns, especially this month, April, so people understand that having a child with autism is not a problem. On the contrary, these children have unique strengths," Boustany expresses.

That is the shift World Autism Awareness Day has been pushing toward for nearly two decades: from awareness, to acceptance, to genuine inclusion. Not the inclusion of tolerance, where difference is merely permitted, but the inclusion of recognition, where difference is understood to be a source of something the rest of us need.

Zeina Boustany has spent four years learning that from the children she works with. The invitation, on this day, is for the rest of us to begin. Because autism does not need to be fixed, only understood, embraced, and given the space to belong.