By Kristin Chloe Pascual and Maria Carmel Rimpos
When Marivic had her second child, Miko, she expected him to follow the same journey as her first child. However, Miko walks on a different path. At the age of two, Marivic saw his first signs of autism.
“There was something wrong with him,” Marivic, now a trainer at the Autism Society Philippines Laguna Chapter, recounts the first time she noticed the signs in his then two-year-old son. She said that Miko did not know how to play with a toy car. Instead of running its wheels against the floor, Miko would just turn the wheels in his hands repetitively. He also would not have eye contact when someone is talking to him.
The lack of eye contact also alarmed Shiela, parent of Althea, an autistic child. The mother became more concerned when she observed that Althea never cried whenever she was hungry.
Sharon’s son, Daron, on the other hand has a slightly different case from Miko and Althea. He doesn’t pay attention when someone calls him. Something else would catch his interest instead. His mother shared, “when music from Disney movies are played, he pays attention immediately.”
The three children have shown signs of autism, a development disorder. Autistic children don’t usually make eye contact when a person calls their attention. According to Joseph Languez, an occupational therapist, they look at the person talking to them for one second and then they drift away. Also, they exhibit repetitive behavior by continuously flapping their hands, flipping their fingers, and even banging their heads.
Languez explained that as early as 10 months, parents can start seeing signs of autism in their child. A simple “peek-a-boo” would normally trigger the baby to laugh. If this isn’t the case, something could be wrong with the child. Usually, symptoms of autism are visible at the age of two years. However, autism can only be officially diagnosed by a developmental pediatrician when the child is already three years old. At this age, a normal child will already fully participate in social interaction, communication, and behavior, while an autistic child will encounter basic learning problems in these three aspects. Aira Kristina Basmayor, a speech language-pathologist stated that these three are known as the “triad of impairments.”
For diagnosis, a child must first take the standardized diagnostic criteria indicated in the Diagnostic and Statistical Manual IV (DSM-IV). It shows a list of a child’s problems in social interactions, communication, and behavior or activities. Languez added, “at three (years of age), all of the criteria would be observed because at two years old, the language is not yet that developed.”
Though the real cause of autism is still unknown, it has already been linked to social factors, heritage, and a combination of both. Recent materials from Mt. Sinai Medical Center have shown that people with autism have an incomplete set of genes. However, this case is not always inherited from the parents.
People with autism encounter problems in processing the sensory inputs transmitted in their brains. Languez said that autistic children have problems specifically with their five basic senses (touch, sound, sight, hearing, and taste) as well as proprioceptive and vestibular senses. Proprioceptive senses refer to the sense of joint movement which allows us to move objects and respond to other’s touch. On the other hand, vestibular senses refer to the sense of balance and direction. It enables a child to stand properly and distinguish left from right.
These problems can be observed mainly through an activity children naturally engage in as part of growing up such as playing. Autistic children are very peculiar in the way they play and interact. When playing, one would notice that an autistic child has his “own world” which means that he isolates himself from other people.
It is important to note that each child diagnosed with autism is unique. According to Basmayor, “they manifest different levels of severity and also have different characteristics.” One technique that benefits one child could have a different effect on the other. Hence, it is important that each child is treated with utmost care.
Autism still has no cure but it can be monitored through special education, occupational therapy, and speech therapy. Children with autism need assistance to properly perform basic activities of daily living such as taking a bath, brushing their teeth, dressing up, and eating. They do not learn by themselves; they should be taught.
The goal of a speech therapy is to improve the child’s communication and socialization skills. Basmayor stated that it would be difficult and frustrating for the children and their families if they don’t know how to express even their basic needs and wants. “Our role is to help children with autism learn how to express themselves, engage into communication (verbal or non-verbal), exhibit appropriate social skills and be functional,” she added.
In line with this, the goal of occupational therapy is not really to correct the children’s behavior but to teach them to become independent. When they grow up, it wouldn’t be difficult for them to adapt. Their parents wouldn’t have a difficult time assisting them anymore. Moreover, the occupational therapists would want to let the children experience the “normal” life, without any discrimination. “We give them ways to make their lives meaningful,” Languez said. “We make them feel that they’re also normal.”
Unfortunately, the parents can also hinder the progress of the child. There are cases when the parents won’t accept their child’s condition. “Denial is the number one defense mechanism,” he said.
The tendency of parents with an undiagnosed autistic child is to evaluate them as having delayed development. Languez added that the earlier the parents would accept the situation of their child, the sooner the possibility of intervention towards the progress of their child.
Glaiza Ozarraga, another occupational therapist, said that parents who are in denial always ask for a second opinion from other doctors. “They won’t stop going to doctors until someone would tell them that their child is just delayed,” Ozarraga added.
Moreover, Ozarraga said that this kind of thinking of parents greatly affect the progress of the child as they might not put him into therapy right away. And if they decide to, they might even control the flow of the session.
To boost the esteem of the parents, Languez suggested the Autism Society of the Philippines (ASP) as a support group. “They offer free seminars to have an idea [about autism] and to accept that it’s okay to have such a kid,” he said.
Basing on the figures from the United States social mapping data, Autism Society Philippines believes that one million Filipino families live with an autistic member. As mechanisms for diagnosis have become sophisticated, more and more people are likely to be diagnosed autistic. Shiela, who is also part of the Autism Society Philippines Laguna Chapter has realized that of all people, she should be that one person who will not discriminate her own daughter. Before, she was still scared bringing Althea to public places for fear that other people might discriminate her daughter.
However, she has learned that she should take risks and let Althea blend in. Althea is currently enrolled at the Anos Day Care Center and is able to cope with the lessons. She also added that Althea does not throw tantrums anymore whenever they go to malls. She even knows how to run an errand already and buy from a neighborhood store. “My approach is that I play with her but at the same time I also train her,” says Shiela.
Aside from denial, the capacity of a family to pay for therapies and special education could also be a great barrier. During diagnosis, the developmental pediatrician would usually require the patient to undergo a costly Brainstem Auditory Evoked Response (BAER) to rule out that the disability is not caused by impairment in the brain.
Therapy sessions are costly. For the speech therapy, initial evaluation ranges from Php1,500 to Php2,500 while actual therapy costs Php500 to Php700 per session. On the other hand, the estimated value for an occupational therapy is about Php500 to Php650 in one session. If a family could afford the expenses, they would opt to go to private hospitals and pay the rate.
Meanwhile, some of the parents go to public hospitals, like the Philippine Children’s Medical Center and Philippine General Hospital just to get an intervention or correction in their child’s behavior. However, they sometimes need to wait for months before they could be accommodated.
According to Ozarraga, intervention is important because there is a major difference between the behavior of a child who underwent therapy and who didn’t. She said that the latter would be uncontrollable if they would go to a session. “Those who had therapy already knew the routine, so they’ll sit down once they get inside the room,” she explained.
In Daron’s case, Sharon shared that they were not able to enrol him to the school and therapy center recommended to them by their first development pediatrician due to its high cost. As a result, they opted to enrol Daron to a less costly special education. She said that they have seen changes in Daron’s development but the expenses are still relatively high since it’s located far from their home. When a special education center was established in Paete, they immediately transferred Daron to make some adjustments with their family budget.
Sharon admitted that along the way, Daron’s follow up at home became inconsistent causing the regress of his son’s development. “At the end of the day, follow up and consistency is still the essence of improvement,” Sharon explained.
According to Ozarraga, therapy won’t be effective if the parents don’t participate in changing the kid’s behavior once they go home. She said that they must also help the child practice what he learned at school. “We always encourage families on what activities they can do at home, because the home is the best learning place for the child,” Basmayor expressed.
Marivic agrees with this. Though she didn’t have much resource to give her child a therapist, she tried her best to teach her own child. Upon Miko’s diagnosis of autism, she started researching about the disability through books and magazine articles in libraries and decided to learn how to teach an autistic child. Ever since then, she has always been Miko’s teacher and guidance. She proudly stated that her child has become more independent after many years of training. He could even now travel and ride an airplane alone.
She emphasized that parents have a big role in improving their child’s situation. “In a therapy, they only learn for an hour a day,” she said, “but we spend 23 hours with them. We [the parents] have to be the one to guide them.”