Lack of awareness month: The abandoned end of the spectrum

From the Publisher's Desk By Mar-Vic Cagurangan

Some people get fascinated when I tell them that my 32-year-old son, Ico, has autism. “He must be a genius!”

I once shared that assumption after my first encounter with a famous person with autism. I met Temple Grandin in 2000 while covering the First World Autism Conference in Melbourne, Australia. She is an American animal scientist, professor at Colorado State University and inventor, whose groundbreaking livestock handling designs have improved animal welfare worldwide. Ico was 7 years old then. I had high hopes.

My initial introduction to autism was through the 1988 classic "Rain Man," starring Dustin Hoffman as Raymond Babbit, an autistic savant with remarkable attention to detail, an eidetic memory and mathematical brilliance. The most iconic part is the diner scene where he, in a robotic fashion, accurately counts the toothpicks that have fallen on the floor just by looking at them: 246.

While the film successfully introduced autism to a mainstream audience, I would learn years later that it is depicted through a cinematic aperture. It oversimplifies the day-to-day challenges faced by individuals with disabilities

and their families.

For all the romanticized characterization of autism, not all people with this condition are Temple Grandin and Raymond Babbit. 

Every year, we mark April 1 as Autism Awareness Day with proclamation signing, photo-ops, community fairs, display booths, fun and games. For kids, these special kids. 

Children grow up, but “autism awareness” campaigns don’t mature beyond pomp and circumstance. “Awareness” ceremonies fail to highlight the challenging realities that await children as they transition to adulthood.

While the advocacy community focuses on children, adults with autism are left out in the periphery. It reflects a disconnect and the absence of substantive discussion on the fate of adults with autism. Parents muddle through as best they can.

Accessing programs designed to help autistic adults get employed and become independent is not a walk in the park. You jump through hoops and find yourself trapped in a Kafkaesque nightmare.

The process involves onerous bureaucratic requirements, several documents, repeated visits to the Division of Vocational Rehabilitation, persistent follow-ups and requests for updates. 

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It took a couple of years before Ico got fully employed. However, Ico lost his job during the pandemic. The janitorial service company where he was employed eventually shut down. I went back to the DVR to request assistance for another job placement. They denied my request, explaining that Ico had already graduated from the training program.

I tried my luck with iCan Resources, advertised as a provider of “employment opportunities for persons with significant disabilities and veterans.” But our trip to their office made me realize that a lack of understanding and indifference exist even within the system that serves this segment of the population.

Ico is a nonverbal person. As his legal guardian, I speak on his behalf. During the interview, the HR agents insisted that Ico answer their questions. I am his voice, I told them. They shunned me. “Let him answer,” they said. “We are applying for a janitorial job. Does it require verbal skills?” I asked. No, but the only way for the application process to advance was to make him answer their questions, they said. In which case, the process was unlikely to proceed.

I tried to share a phone video showing his work at his previous job, which I thought would meet the qualification criteria for a janitorial job. They were not interested. They made us come back for another interview, only to be told again that he needed to answer their questions. (Did they expect him to talk when they scheduled another interview?)

No talk, no work. I thought iCan Resources hired people with disabilities. “We can, but we don’t necessarily have to,” the interviewer said.

Helping an adult-child with autism thrive in the world can be frustrating when navigating the system you thought you could count on.

According to a study by Drexel University’s A.J. Drexel Autism Institute, nearly 80 percent of autistic adults in the U.S. remain unemployed or severely underemployed and 99 percent are not receiving public employment services from government programs. 

The 2019 Behavioral Risk Factor Surveillance System report indicated that Guam had 29,236 adults with disabilities, equal to 31 percent of adults on island. The Disability Employment TA Center’s 2025 report said Guam's disabled population has an employment rate of 19.1 percent.

Every year, the DVR relinquishes about $2 million in federal funds allotted for disability employment programs because, Director Joseph Cameron claims, “Guam receives more than it needs.”

Guam law requires the government to allocate 2 percent of its workforce to individuals with disabilities. But like every other virtue-signaling government action, this law is just a press release that does not make up for the system’s failure. 

The future of adults with autism is as mysterious as their condition.

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