April is Autism Awareness Month and an opportune time to share personal stories that help spread awareness and acceptance of autism spectrum disorder (ASD) – the diagnosis of which has risen steadily in Malaysia over the last decade.
In 2021, 589 children aged 18 and below were diagnosed with ASD, up 5% from 562 children in 2020. In 2010, only 99 children under 18 were diagnosed with ASD (Health Ministry).
Here is the first of two deeply personal experiences shared with sincerity and emotion during the Autism Awareness Month celebration at Taarana School in Malaysia, a centre for children with special education needs. RYTHM Foundation, the social impact initiative of the QI Group, established the school in 2011.
Autism Diagnosis: A New Beginning
Life is full of ups and downs, but sometimes the downs come all at once.
In 2019, *Diana’s world was turned upside down when she went through a painful divorce and learned of her son *Harry’s autism diagnosis – all within a few months. (*Names have been changed to protect their identities.)
Like any mother, Diana was acutely aware of every change in her son. She noticed early on that he struggled to focus, had difficulty expressing himself, and flapped his hands.
“He was in a preschool then and would not respond when his teachers wanted him to join the rest of the class,” Diana recalled, teary-eyed.
“Eventually, he was left in the back of the class. I was distraught,” Diana added in a touching testimony.
She spoke of her challenges as a parent of a child with autism – but also of the joys and triumphs. Her words left the audience misty-eyed but inspired them to be more understanding and accepting of autism.
Diana’s concern for Harry’s development led her to bring up her observations during a routine doctor’s appointment. As a result, Harry was referred to a developmental paediatrician, who diagnosed him with ASD three months later.
This diagnosis was both a relief and a challenge for Diana. She was relieved to finally have an answer for what was causing Harry’s difficulties. Yet, she was anxious about raising a child with autism. She knew it would be a long and challenging road ahead, but she was determined to give Harry the best possible chance at success.
Diana soon enrolled Harry in speech and occupational therapy. However, the treatments came with a financial cost that was difficult to bear. As a single mother with a limited income, the classes strained her finances. “I even had to sell my car at one point,” she revealed.
Diana was, however, grateful her employers were compassionate toward her plight. As such, she was allowed to work from home to accommodate Harry’s therapy appointments thrice weekly.
Thriving at Taarana
Diana was finally starting to get her life back on track when COVID-19 struck. However, the lockdowns made it difficult for her to continue his therapy. The pandemic also made it difficult for Diana to find and afford the necessary resources to care for Harry.
Nonetheless, mother and son would look forward to their weekly grocery trips during the lockdowns. These outings provided them with a much-needed connection to the outside world. As they shopped, Harry would learn new words and expand his vocabulary.
Diana and Harry are thriving today. Harry excels at Taarana, where he has made tremendous developmental progress.
Diana expressed her gratitude toward the centre’s dedicated principal and teachers for their collaborative approach towards Harry’s learning and education.
She smiled as she spoke about Harry’s journey at Taarana: “His previous school was too focused on academics. But Taarana is different. They listen to parents and help children reach their full potential. Harry is so happy here. He has friends and is learning and thriving.”
Diana left the audience with this thought at the end of her emotional story: “I hope all parents know that we are all on our own journey but not alone. We all struggle in our own way, but that doesn’t mean we don’t love and accept our children. Acceptance doesn’t mean changing your life completely. It just means being there for your child, no matter what.”