Rethinking Diagnosis Is Non-Speaking Autism Misunderstood as Intellectual Disability?

Is it possible that we have been misdiagnosing non-speaking autistic people as having intellectual disability?

Autistic people who cannot communicate often have Intellectual Developmental Disability (IDD) listed as a condition in their medical records. The issue is that intelligence can only be measured if a person can communicate through speech or sign language. People with non-speaking autism can do neither, so they are often considered intellectually disabled.

Language, especially expressive language, is seen as an important attribute of intelligence. Immigrants who cannot speak the prevailing language are sometimes unfairly judged as less intelligent. We often assume that someone who speaks eloquently is smart — or that multilingual people are more capable. Successful leaders are admired for their communication skills.

People who were born deaf and unable to speak were once called “Deaf and Dumb.” For centuries, they were marginalized and excluded from education, employment, and society because many assumed that without speech or hearing, they couldn’t think or learn. This stigma led to discrimination, isolation, and the denial of basic rights.

The same may be repeating with non-speaking autism. What if a person can hear, understand, and think but cannot express language traditionally? There’s currently no reliable way to measure intelligence in such cases — but that doesn’t mean they lack it. Just because we can’t measure intelligence doesn’t mean it isn’t there.

Why does this matter? Because labelling them as intellectually disabled causes deep harm. They’re ignored, marginalized, and denied opportunities to learn. Their confidence and social status plummet. Many develop learned helplessness, where both they and their families stop trying to grow or explore new paths — sometimes even encouraged to “accept” a low-functioning life.

My daughter, Siri, who has non-speaking autism, is one of the lucky ones. After decades of silence, she found a way to communicate using a letterboard. Yet professional societies dismiss this method as “unproven” or even “dangerous.” They can’t fathom that what they’ve been taught might be wrong — even after seeing hundreds of children thrive academically through this approach. It’s shocking that no one is even studying it seriously. That’s a disservice to the 2 million people who live with this condition.

I’m fortunate to be a physician and researcher who can analyze data and question assumptions. But more than that, I’m grateful for my daughter Siri — for her courage, persistence, and determination to prove that she is smart — and for a family that stands with her every step of the way.

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