Today is World Autism Day: a day created 12 years ago to raise awareness about people with Autism Spectrum Disorder throughout the world. But what is it really like to raise an autistic child in Singapore? Is there enough support? Is Singapore accepting of children with special needs? How do you find the right therapy? And then how do you juggle that therapy, cope emotionally and raise a family at the same time?
Soek Ying Koh is a mother of four, including Ryan, 22, who is on the autism spectrum. Determined to help create a life of independence for Ryan, she founded Mustard Tree, which trains young artisans with special needs and has evolved into an online and bricks-and-mortar store at Ng Teng Fong General Hospital. Soek Ying is on a mission to raise awareness and acceptance of autism and the differently abled here in Singapore, and to help others like Ryan find their sense of self-worth. Here she shares her story with HoneyKids…
Ryan was two when his preschool teacher shared her suspicion that he could have autism…
Back then, information was limited and very fragmented, and there were few experts here in Singapore. We had to wait a long time before we could gain access to help, and deciphered most of the information ourselves – paediatricians, speech pathology, occupational therapy, psychologists, Glen Doman, ABA therapy, you name it. We were pretty much running around like headless chickens! The most daunting of all? The cost.
We were in shock, of course.
Then came: what did we do wrong? Was it hereditary? It didn’t make things any easier with the older folks bringing in some old wives’ theories! I am thankful that my husband Barry and I came to terms with Ryan’s autism very quickly. We did not dwell, but immediately started researching the topic. Acceptance is very important. Our son depends on us. We did not want to waste time.
Back then, the literature supported the theory that by age seven, if your child does not speak, then the window of learning diminishes and you will lose them. So we went on a rampage to find all the support our son needed. I have to confess, I hated celebrating his birthdays because they were a step closer to the dreaded seven! But age seven came and went without any big drama. Ryan was making baby steps towards improvement. While his speech was still delayed, he made progress in other areas, such as his behaviour. This gave us hope.
Above all, what kept us going was the strong belief that Ryan is a gift from God, and life does not give us things beyond our abilities. That faith kept us going.
Singapore has come a long way…
Awareness has definitely increased, as well as the level of support and related services. Acceptance and understanding, on the other hand, are still very limited. Many are quick to judge. Often, if you see a child having a public meltdown, the immediate thought is ‘bad parenting’. Even worse, when you see an adult behaving differently, they are labelled as ‘mad’. You may be surprised, but many parents still think their children can get ‘infected’ if they mix with children with autism, and many families still avoid going out for fear of the stigma, or what people will say of their child.
My skin has thickened over the years. Ryan is entitled to the space and air around him as much as you and I.
What really made a difference?
Early intervention, and consistent and intensive therapies. Occupational therapy is also key in helping Ryan develop purposeful daily life skills.
For the rest of us (my husband Barry, and Ryan’s siblings Nicholas, 24, Christien, 19, and Gabrielle, 10), having a supportive and understanding extended family and friends really helped in alleviating a lot of mental and emotional stress.
The number of children and young adults needing help still exceeds the support and services offered, but what is more important is progress and speed…
Parents had been crying for the Special Education (SPED) school age limit to be raised to 21, and finally there are some SPED schools that do keep students past the age of 18 years, including Metta School, Pathlight and Delta Senior School. Most schools, however, are still only taking students until they are 18 years old. Schemes and support services are either unavailable or very fragmented. Take a look at the Enabling Master Plan, for example: into its third instalment and 15 years in planning and execution…
Government schemes cannot be rolled out sequentially. It has to be concurrent: early intervention for pre-schoolers, learning support in SPED schools and employment support those over the age of 18. We need a system to catch our children when they transition at different stages. Gaps cause a disruption to learning and progress. If we do not hasten support and training now, it’s going to be a societal issue later on. What can 70 or 80 year-old parents do with a 55-year-old special child?
My son’s greatest challenge is gaining the life skills and work skills to face life after 18…
School is a secured and structured environment. Post 18, life literally hits you like a tonne of bricks. Due to his autism, Ryan’s development and learning are delayed. He is a child trapped in a 22 year-old-adult’s body. Legally he is an adult, and we can no longer help him to make life decisions or medical decisions. But he cannot operate a bank account. He cries when he is upset. He laughs when he is happy. Period. We are in the process of applying to court to be deputised to manage his affairs, and it’s been three years now.
Ryan can never be totally independent. But if society is more understanding and accepting of him, his journey could be less sheltered and restricted.
Mustard Tree was inspired by Ryan…
Seeing Ryan aged out of the school system, without employment, we decided to train him ourselves. It started with us trying to build upon his sewing skills as he is blessed with good fine motor skills. We weren’t crafters, so we had to learn the process of leather crafting and translate it into bite-sized steps for Ryan. What started as proud sharing on Facebook by a mother eventually led to people asking to buy Ryan’s products.
We felt there are others in a similar plight, so we approached an industry expert and developed our first training programme in flower arrangement for people with special needs. This programme is also supported by SG Enable [an agency dedicated to enabling people with disabilities]. We have since trained many students, some of whom are working with us full time. We want to empower youths like Ryan with comparable craft skills and give them a sense of self-worth.
My greatest hope is that Ryan will be able to take care of himself…
I worry about who will take care of him when we are not around. Yet, I’m so proud of the many milestones that he has achieved. I’m most proud of who he is – my Ryan. I want others to know he is a sweet-natured young man, simple in needs and full of joy.
I want other parents to know that acceptance is the first and most important step to helping your child.
Allow your child to develop at their own pace – not by your standard, or the world’s standards. As long as there’s improvement, no matter how big or small, there is hope.
Like this story? Here’s more we think you’ll enjoy:
Early intervention and inclusive preschools in Singapore
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Counselling for children and families in Singapore
Celebrating Down syndrome in Singapore
Photography: courtesy of Soek Ying Koh and Mustard Tree.
This story was first published in 2017.