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Thursday, April 25, 2024

It’s National Autism Consciousness Week

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“May we be mindful of the people with ASD and other disabilities, know and understand how they feel, and learn and practice empathy and compassion for them”

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Every year the country celebrates National Autism Consciousness Week to raise awareness about autism and the need for the greater inclusion in society of people with autism.

On Jan. 4, 1996, President Fidel Ramos signed Proclamation 711 declaring the third week of January for the celebration.

In line with this, last week I wrote that some of our kababayan are having difficulty getting person-with-disability IDs for their children (“PWD ID snafu shows system inadequacies,” Jan. 18).

I wrote about the experience of “Beng,” a writer who had a bad experience at the Bacoor, Cavite Persons With Disability Assistance Office when she went to renew the ID of her son with autism.

“Kim,” who read that column, wrote to share her own experience that happened in 2015.

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Although it’s been eight years since then, she hasn’t gone back to have her son’s PWD ID renewed because she was afraid she would go through the same bad experience she had.

In 2015, Kim went to the Dasmariñas City (Dasma) Social Welfare and Development Office to renew her son’s PWD ID card.

Her son “Charlie,” now 28, was diagnosed in 1996 and 2014 to be in the autism spectrum by doctors from De La Salle University Medical Center in Dasmariñas and Bacoor Doctors Medical Center.

Charlie was first issued a PWD ID card in 2014, signed by Mayor Jenny Barzaga, who is still the city’s mayor. Back then, Kim says, “a kind young man with disability immediately processed our son’s application.”

However, things went haywire the following year, when Kim and her husband returned to renew their son’s card.

An “elder woman” at the office told the parents that because their son was of voting age, “he must vote to qualify for a PWD card.”

Kim’s husband explained that Charlie “has a lifelong learning disability, he cannot vote.”

The person at the office told them they must secure a new medical report and a barangay clearance that “explicitly indicates why [Charlie] cannot vote and state the reason why.”

When told again that Charlie has autism and cannot vote, the woman replied, “I-guide niyo bumoto.”

Kim and her husband were appalled at the –there is no other word for it – stupidity of this person.

Kim reiterated that her son has a severe case of autism and that they are at the end of their financial rope paying for his special education.

Again the woman said, “Kumuha kayo ng barangay clearance,” etc.

This despite a medical report from the doctor clearly stating that Charlie is diagnosed with severe autism.

I do not know of any law that requires someone to be a voter before they can avail themselves of government services.

I also live in the Dasma area, and was told by someone from our barangay that I needed to be a voter.

I told her, show me the law that says that’s a requirement for you to help me. She quickly backpedaled and gave me my barangay certificate without further comment.

Why are some LGUs insisting that someone be a voter before they extend assistance?

This is unjust and unfair.

So many of our people who are less knowledgeable are compelled to register with Comelec before they are helped.

Kim ended her message to me by writing, “Sana po magtalaga si Mayor [Barzaga] at DSWD [Department of Social Welfare and Development] ng competent at compassionate na social worker.”

She added: “In fairness po kay Mayor Jenny Barzaga, napakahusay po ng COVID response ng kanyang tanggapan.”

Charlie, as someone with autism, was given priority in the vaccination drive and was done in five minutes when his parents took him to get his shots.

Kim and her husband are senior citizens, at 67 and 72 respectively. They are too dismayed to return to the office to renew Charlie’s PWD ID, and at their age, who can blame them from being discouraged?

What is autism spectrum disorder?

For those who do not have friends and family with this condition, they may be desensitized or insensitive to, or unaware of, the challenges this condition poses for those who have it and those who care for them.

ASD, according to the US Centers for Disease Control and Prevention, is a “developmental disability caused by differences in the brain.”

The National Nutrition Council shared the following information about autism on their website in line with last year’s celebration of NACW.

This passage illustrates the challenge of caring for a person with autism: “[ASD] is a developmental disability characterized by social and communication deficits that impede optimal functioning…

“Some autistic people have difficulty in making eye contact, understanding or using spoken language and expressing emotions or feelings which sometimes lead to self-harming behavior, tantrums and aggression…

“They often have constricted preferences and usually dwell on established routines or repetitive behaviors.”

Clearly, it is not only difficult to live with ASD, it is also difficult to care for people with ASD.

So why are some personnel in government agencies and LGUs giving the parents and guardians of people with autism a hard time just to get their Ids?

I am calling again, as I did last week, on the National Council for Disability Affairs.

What is your response to this story, the story I told last week, and the many other similar narratives across the country of the difficulty of getting PWD IDs for people with autism and those with other disabilities?

I visited the NCDA website again yesterday.

It still has not improved since the last time I checked it (last week).

It still looks like carp.

It still looks like it was made in the early age of the internet, during the days of MySpace and dial-ups.

The latest news is from December 2022. They don’t even have anything on the NACW.

I hope the NCDA and LGU officials will bear in mind that disabilities are not limited to those that can be seen; psychosocial disabilities such as ASD are very much a challenge to those that live with them and their caregivers.

I also ask the mayors of Bacoor and Dasmariñas, and other LGUs across the country, to make sure that the people handling your PWD affairs and managing your PDAOs are competent, kind, and compassionate.

It’s National Autism Consciousness Week: may we be mindful of the people with ASD and other disabilities, know and understand how they feel, and learn and practice empathy and compassion for them.

* * * Dr. Ortuoste is a board member of PEN Philippines, member of the Manila Critics Circle, and judge of the National Book Awards. FB and Twitter: @DrJennyO

* * * Dr. Ortuoste is a board member of PEN Philippines, member of the Manila Critics Circle, and judge of the National Book Awards. FB and Twitter: @DrJennyO

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