Four-year-old Dharma sits silently, his body rocking and his thumb tucked securely in his mouth. The teacher counts to 10 and then with the help of his mother, lifts him to his feet so he can complete his exercise. He’s supposed to push a box filled with toys towards his waiting mother who stands at the opposite end of the room coaxing and cheering him on. Wailing loudly with tears trickling from his eyes, Dharma manages to do just that — before collapsing on the floor at the end, rocking his body and trying to shut out the world.
“It may not look that way but Dharma is trying very hard,” whispers Wong Hui Min, administrator of SPICES (Support for Parents, Infants and Children through Early Services) as we staand unobtrusively at the corner of the room watching Dharma at his class. SPICES provide early intervention and school age programmes, training courses as well as assessment and counselling services for parents of children with special needs.
Of course, there’s no way for those without autism to completely understand the autistic experience. My nephew David was diagnosed with Global Development Delay (GDD) and on the autism spectrum (one of the attributes of GDD). After observing him and watching him grow up for 18 years, I still find his emotional and cognitive process as fundamentally mysterious as ever. The impenetrability of autism, with its seemingly endless variants and its essential “otherness,” is its hallmark.
Watching Dharma hits me hard. And I’m brought back again to this very same place more than a decade ago. My David spent his days idly flipping through picture books, flapping his arms and he was, at most times, in his own little bubble, oblivious to the rest of us. He missed the usual milestones most toddlers his age would sail through in terms of growth, motor skills and communication. Once diagnosed, he was brought to SPICES (thanks to a specialist’s recommendation) by his desperate parents. That decision — nearly 15 years ago — turned out to be the beginning of his transformative journey.
For a good number of years, my sister and her husband would take turns making that long journey from Klang to Wangsa Maju for David’s classes here. “It was worth it,” my sister would tell me later, attributing SPICES for some of the milestones David achieved during his time spent at the NGO.
It’s by no coincidence that I’m here at SPICES on World Autism Awareness Day (which falls every April 2). The rallying cry of “Light It Up Blue” helps shine a torch on autism as a growing global health crisis while giving voice and recognition to those diagnosed with autism.
Intervention is vital
Autism is a complex brain condition, encompassing a broad range of symptoms. Those diagnosed with autism are often described as being “locked in their own world” and struggle to communicate with others. They usually have heightened or lowered acuity of the senses and can display repetitive behaviour. They often have other learning difficulties such as dyspraxia, or may exhibit compulsive behaviour.
According to the Centre for Disease Control (CDC), a rising percentage of the world population is being diagnosed with an autism spectrum disorder (ASD). As of 2014, an estimated 1 per cent of the world population had an ASD, with the United States estimating 1 in 68 children or 3.5 million Americans living with ASD. Recent statistics show that there are approximately 300,000 people living with ASD in Malaysia.
While there isn’t a cure for autism, it can be treated — particularly if it’s caught early. Intensive coaching from a young age, says Wong, can help alleviate the symptoms. Therapists or teachers at SPICES work with children one-on-one, evaluating the child’s life skills and rewarding signs of progress.
“Every little milestone, no matter how small, is still progress,” insists Wong. “We tell parents that there’s hope for their child. ‘Look, your child can learn. Your child can make progress. If you continue to work with your child, he or she is going to surprise you.’”
Early intervention can benefit children with autistic spectrum disorder — the earlier, the better. Research has shown that early intervention can improve a child’s overall development. Children who receive autism-appropriate education and support at key developmental stages are more likely to gain essential social skills and function better in society.
Early detection, says Wong, can provide an autistic child with the potential for a better life. “We believe that all children have potential,” explains Wong, smiling. “It’s our job to uncover that potential and provide them with all the support they need to grow and learn just like any other children, and to have access to all the opportunities that other children have.”
There’s a range of concerns that could potentially impact a child’s learning ability, including difficulty with speech/language, cognitive impairment, autism spectrum disorder, emotional concerns, traumatic brain injury, hearing or visual difficulties, early childhood developmental delay or a specific learning disability. Intervening early, believes Wong, can, in many cases resolve, or at least limit, a child’s roadblock to learning. “The teachers at SPICES are committed to building up our students to reach their maximum potential,” she says.
The petite 32-year-old who has a Masters in Special Education admits that teaching was an eye-opening experience for her when she first joined SPICES six years ago. “They (the children) try so hard despite their disabilities. Sometimes we don’t see that. What we see most times are the ‘misbehaviours’ that they display. But they really do try hard,” she says fervently, adding that the teachers at SPICES celebrate every small victory in their classroom.
“Their progress is an accumulation of every tiny milestones achieved. Then when you start witnessing how parents’ perception about their children also starts to change, it becomes hugely rewarding. It’s really something money can’t buy,” she adds.
“I’ve learnt to lower my expectations and appreciate every small victory my students achieve,” agrees 30-year-old Cassandra Sii. “It’s about providing these children with the skills to live life to the max and be as much in control of their lives as they possibly can.”
For 29-year-old Evie Chuah, it was about learning to enjoy them and seeing them as individuals with untapped potential. “My inspiration comes from my mother, a teacher, who used to take in ‘difficult’ students who were quite possibly children with undiagnosed disabilities. She spent time teaching them and obtained amazing results,” she recalls, adding that witnessing this had her exploring the idea of working with ‘special needs’ children. “It was the best decision of my life,” adds Chuah softly.
Chan Pui Pui, who has an advanced diploma in Special Education, recalls a special four-year-old girl with Rett Syndrome who impacted her deeply. Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive inability to use muscles for eye and body movements and speech. “She’d cry all the time and shake uncontrollably. I could only assign her the simplest of tasks and it seemed an insurmountable task to reach out to her. Still, I made the effort to build a relationship with her. One day as she was leaving class, she looked at me and actually said ‘bye’. That melted my heart completely.”
Looking wistful, she reveals that not long after, the little girl stopped coming for classes. “Due to family issues, her mother stopped bringing her to class. To my lasting regret, I lost contact with her. It taught me a lesson I’ll never forget,” she says sadly. “Next time, I won’t let go of a child so easily. We need to constantly engage with the parents to ensure that the programme is followed through, in the best interest of the child.”
For every parent who has an autistic child, the journey is often fraught with challenges, endless research and difficult choices, as they constantly seek out ways to reach out to their child. But there’s hope, assures Wong before adding: “However, you need to commit to the programme and continue the learning back at home.”
One area of early intervention that has the potential to make a really positive impact on outcomes for children is helping parents to take ownership of their child’s education. “Parents must play an important role in early intervention services to have a significant effect on children’s developmental and social-emotional well-being,” explains Wong
Parents of autistic children can learn early on how to help their child improve mentally, emotionally and physically throughout the developmental stages with assistance from SPICES. “We provide resources for parents, we get them involved in the classes and encourage them to bring the teaching materials back home so they can continue with the learning there. We also have dialogues with them to ensure that they’re continually supported,” she says.
And it begins with them seeing their children differently. “Like all other children, children with disabilities and delays are gifts from God, and it’s our job to uncover the treasures that’s hidden within them. That’s why we do what we do,” she says gently, before concluding: “So don’t think of them as a burden. Think of them as gifts that are simply packaged differently. They’re given to us for a reason and a purpose. Spend time with them, enjoy them and give them the opportunity to blossom. They’ll grow to be a blessing in return.”
For more information on SPICES and the early intervention programme, go to www.spices.org.my
Anita Velu, housewife
When my son Dharma was six months old, I noticed that there was no progress. When he was fourteen months old, we found that he couldn’t stand on his own. After many tests, he was eventually diagnosed with Global Development Delay (GDD) along with autism. I prepared myself for the outcome. I made a decision to quit my job despite the financial challenges but I had to act in the best interest of my son. I found out about SPICES through the recommendation of a specialist and I’ve been bringing him to classes for the last eight months. There are improvements and little milestones achieved. It makes me really happy and thankful to see Dharma improve little by little.
Wong Siu Hui, homemaker
I only discovered that my 4-year-old son was autistic last September. He never liked to interact with people but I thought he was shy! It was Hui Min (from SPICES) who first noticed that Joshua was displaying autistic symptoms and she advised me to get him tested. When he was finally diagnosed, I was devastated. The early intervention programme has been extremely beneficial and the tremendous improvement I see in Joshua is nothing short of amazing.