Of challenges and hope: Living in the autism spectrum during the pandemic

Josiah Antonio, ABS-CBN News

Posted at Apr 08 2021 06:00 PM

Families of Mona Magno-Veluz (left) and Peng So (right) mothers with children on the autism spectrum. Photos from Mona Magno-Veluz and Peng So.

 Editor's note: Autism Society Philippines says early detection is key to immediate intervention. Families are advised to seek experts for proper diagnosis.

MANILA — For 62-year old housewife Peng So, the coronavirus disease (COVID-19) has become another layer of challenge for her two sons on the autism spectrum.

Her sons Angelo, 23, and Patrick, 30, had a hard time coping with life under the pandemic as their studies and work were affected by the lockdown.

“Like with Angelo, he doesn’t even realize what is happening around him, hindi niya rin alam ‘yung situation outside … matitigil ‘yung school and matitigil ‘yung therapy anong gagawin ng anak buong araw? (He doesn’t know what was the situation outside … going to school and therapies were paused, what will my son do all day?), she told ABS-CBN News in an interview.

“Patrick used to work (for a family business) … he felt sad with all the things that are happening tapos nawalan pa siya ng trabaho kasi (then lost his job) … for Patrick his motivation is money. He wants to be financially independent at a certain age,” she added. 

She also noted that her fellow parent with the same situation had a hard time managing their kids as access to therapy and spaces became limited due to the pandemic.

This adds to the many challenges of families dealing with autism spectrum in the Philippines, where the disorder has no extensive documentation. 

Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication, and behavioral challenges, according to Mona Magno-Veluz, trustee of Autism Society Philippines, 

As early as 1 year and 6 months up to 3 years old some symptoms such as delayed speech, and problems with socialization and communication can be observed, she said. 

 

She added that if there are visible signs people may opt to go to a developmental pediatrician. If not available, families may consult psychiatrists, psychologists, and neurologists. 

Magno-Veluz said that the Philippine government doesn’t have proper documentation of people on the autism spectrum. They only base the figures on the CDC’s estimate of 1 percent of the total population. 

There are also only 80 developmental pediatricians that can accommodate people on the autism spectrum in the country, she added.

Unfortunately, there is no cure for ASD but there are three ways how to treat it such as occupational therapy, speech therapy, and special education.

“Autism is a spectrum condition so that means there are people that would need help for the rest of their lives on one end,” Magno-Veluz told ABS-CBN News in an interview.

“And on the other end there are people who would be able to take their Ph.D., get married, and have positions in companies that’s altogether possible but it’s also important to note that autism is not just a linear thing,” she added. 

The trustee explained that occupational therapy teaches people in the autism spectrum basic daily tasks and behavior modification and therapy while speech therapy focuses more on communication. 

A session may cost around P500 to P1,000 per hour on average, but it still depends on the session that will be done, she said. 

Special education, on the other hand, has a curriculum to give proper education to people on the autism spectrum.

Meanwhile, there are other non-traditional interventions that families can do like therapies such as art, music, diet, and nutrition among others. 

“It really comes down to what the child is passionate about that will help them,” the trustee said. 

“Ang importante po ay mata-touch mo ‘yung interest ng tao at mabibigyan mo sila ng pagkakataon na ma-express ‘yung sarili nila at maintindihan ‘yung mundo nang mas maayos,” she added. 
 
(The important thing is that you can touch people's interests and give them the opportunity to express themselves and understand the world better.)

Early intervention and diagnosis will also help families adapt easily. 

So recalls that her third child Patrick was diagnosed with ASD as early as 2 years old. 

“I noticed delays so napa-diagnose ko siya at an early age. I feel so bad, you know the usual thing na parang, nawala ‘yung dreams mo and all but then I didn’t dwell on that because I have to do something about it,” the mother of 4 from Pampanga told ABS-CBN News in an interview.

(I noticed delays so I had him diagnosed at an early age. I feel so bad, you know the usual thing like, you lost your dreams and all but then I didn’t dwell on that because I have to do something about it.)

She thought she was right on track but it became a lot harder when he saw signs of ASD with his youngest son, Angelo, who was later on diagnosed with the same disorder.

“Double ang expenses. You know how expensive it is para sa mga therapy and all I’m fortunately one of the mothers who can afford this, marami ang hindi,” she added.

(The expenses are doubled. You know how expensive it is for therapy and all. I’m fortunate that I’m one of the mothers who can afford this, many don’t.)

So said it may be difficult but she accepted her situation when she armed herself with knowledge about the autism spectrum. 

“Tiningnan ko kasi ‘yung positive side of it na natuto na ako roon sa una, alam ko na kung anong gagawin ko roon sa pangalawa. Alam ko kung saan ako pupunta, alam ko kung sino ang lalapitan ko,” she said. 

(I looked at the positive side of it that I learned there the first time, I already know what I will do there in the second. I know where I’m going, I know who I’m going to approach.)

Patrick may have lost his job as the manager of their family business and Angelo struggled with online classes but with their tight family ties, they are getting by. 

“Challenging pero mas malaki ‘yung gains na nakuha ko from transitioning to an online (class) Bakit? Kasi before pupunta sa school sa bahay tas pag-uwi kaunti ‘yung moment na nagbobond kami,” So said.

(Challenging but I had bigger gains from transitioning to an online (class) Why? Because before going to school at home and coming home, there is a little bit of the moment we bond.) 

“Ang kagandahan nun nakita ko kung paano siya mag-interact with his classmates, nakita ko kung ano ‘yung challenges niya, ‘yung difficulties niya, nakita ko rin ‘yung strengths niya … dahil nakita ko siya mas natulungan ko siya at home,” she added.

(The beauty was that I saw how he interacted with his classmates, I saw what his challenges were, his difficulties, I also saw his strengths … because I saw him I helped him more at home.)

So said she now has more time with Angelo while Patrick is busy with his online job. She said that she’s lucky that her sons were able to cope with the situation but they also have members in the community who had difficulties handling their children in the autism spectrum during the pandemic. 

The mother said that it is really vital to be part of a community where you can share your stories. 

“Walang ibang makakaintindi sa akin kundi ‘yung kapwa ko mga magulang. Dahil ito ‘yung buhay ko, mas nagtagal akong magkaibigan na pare-pareho kaming may anak na nasa spectrum sa dahil kami ang nagkakaintindihan, ‘pag may kailangan ka na kaunting push dahil nanghihina ka, kailangan mo nang kaunting dahil parang nadapa ka kasi nahihirapan ka andun sila lagi para tulungan ka kasi naiintindihan nila kung anong pinagdadaanan mo,” she said.

(No one else can understand me but my parents like me. Because this is my life, I've been friends for a long time that we both have a child on the spectrum because we understand each other when you need a little push because we’re getting weak, and you need a little because you seem to have stumbled because you're having a hard time they are always there to help you because they understand what you are going through.) 

“We share best practices. Lumalakas ang loob mong maging magulang para sa anak mo. It gives you the courage to be a parent for your child.)”

Magno-Veluz added that people on the autism spectrum also have the same needs as other people.

People are not obliged to help them but they should families with respect and dignity, she said.

“Whatever we need as neurotypical individuals is also what they need. They may be different in some ways but they are the same in so many others. We have to make sure that they are able to access what they need by right,” she said.

“They don’t have to treat us any differently. It’s really about respect. It is not their job to understand and help us directly, it is just their job to treat us with dignity and respect.” 

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