Understanding and accepting autism

Understanding and accepting autism is one step towards the protection and inclusion of learners with disability.

Program: Education

Type: Story

 “Is my son a mongoloid?” was the first thought that ran through Sarena’s mind as she realized that her son, Mark, was not acting like boys his age.

“When he was two years old, I noticed that he did not have any eye contact. Then when he plays, he is just quiet. Even if you call him, he gave no reaction,” Sarena explained.

“My mom used to say that [the development of] male children is delayed compared to females. So I did not worry at first,” she added.

“But when people would tell me to have him checked [by a doctor], I wondered “Why would I have to when my son has no sickness?”

But as Mark grew older, Sarena found it more and more difficult to care for her son because she did not understand his behavior. During visits to the province, his grandmother complained that he was too rowdy. “People in the community called him abnormal,” Sarena said.

“I tried enrolling him in a day care center but his teacher said, “You may enroll him but maybe the next day his classmates won’t come to school anymore because he takes their snacks and hurts them.”

“I just accepted that he would not be able to go to school because he hurts people. I didn’t know where to bring him. I had to focus on making a living. He was only 4 months when his father passed away so I am his sole provider,” Sarena explained.

In 2017, Sarena learned about the Special Education (SPED) class offered at San Agustin Elementary School, one of the schools supported by Save the Children’s Kabataang Aralin Sa Lahat Ibahagi or KASALI project.

By providing capacity building for teachers, village councils, and parents and caregivers, KASALI project works towards the protection and inclusion of children with disability from early childhood to basic education in the cities of Taguig and Parañaque, and in the municipality of Pateros.

Based on the developmental assessment, Mark has Autism Spectrum Disorder (ASD), which refers to a range of conditions characterized by repetitive behavior, difficulty in communication, and challenges in social interaction.

“I enrolled him in the SPED class and they advised me to also enroll him in therapy. I was alarmed because the only kind of therapy I knew was the one for cancer,” Sarena said. “I met the parents of his classmates and they helped me understand therapy better. But it was too expensive in private therapy centers while I had to wait 6 months to a year to be accommodated at the public hospitals.”

Through the support of the KASALI project, Mark was able to receive the needed therapy. “After only a few months, he was able to sit still, he talks more, and he doesn’t snatch snacks from others anymore,” Sarena said.

“Before, he used to just point at things to communicate but now he knows how to express himself, like when his body is painful. At school, his teacher set up a clear routine and once he sits on his chair he does the activities he needs to do. When we eat outside, he used to snatch food from other tables, but now he is more disciplined,” Sarena shared.

When asked about Mark’s favorite activities, Sarena proudly says, “Mark enjoys eating. He reads recipes well. He can cook and wash the dishes. He plays soccer and he is learning how to sew.”

Sarena became part of the school’s parent group in order to support other families with children with disability. “It has been a great experience being with the other parents. We are now supporting the Community-Based Inclusive Development (CBID) center being set up,” she said.

To address the need for accessible therapy for children with disability, the KASALI project trained village officials and community volunteers to establish CBID sites. These sites aim to sustain therapy services utilizing existing spaces and volunteer para-therapists for speech, occupational, and physical therapy.

Through the support of the teachers and the establishment of the CBID site in their community, Sarena is now confident that Mark will be able to develop his skills. “Mark can now freely play. Before I was afraid that he would be bullied. Other children used to be scared of him because he would push them but now he is friendlier,” Sarena said, “Before, all my time was spent on keeping guard but after only three sessions of therapy, we can let him be without worrying.”

Through the support of the IKEA Foundation, Save the Children’s KASALI project has reached over 78,000 children and facilitated the enrolment of more than 700 children with disability into school since 2014. The project aims to ensure that all children have access to inclusive and protective education through partnerships with the local government, schools, community groups and other key stakeholders.

The KASALI project further strengthens its interventions on inclusive education in 2019 as it improves the capacity of governments to implement programs, develops or enhances policies, establishes a system that strengthens the continuum of services in communities, and generates research to inform and improve education programs for out of school children.

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