Walk a mile in my shoes as mother of two children with autism

My clinic door opened and Lu, a tall, plump young man with downcast eyes walked in, mumbling unintelligibly. His mother, Soo, a middle-aged woman, followed, looking tense and cautious. 

I sensed her distress and despair. Over the next two hours, she told me her heart-rending story: the exhaustion and frustration of being full-time caregiver to her autistic 16-year-old son; chronically traumatised by an abusive husband and the intensive caregiving.

Her husband also has chronic heart disease, and her son has school refusal, contributed by bullying in school and internet gaming.

Soo, who is a naturalised citizen, did not know how to navigate the complex and fragmented health and social service landscape in Singapore. She had no job, no friends, no family, and could not speak or understand English.

I held her hand and spoke words of affirmation, reassurance and encouragement. But as a professional, I felt defeated in the face of the soul-crushing adversity confronting caregivers like Soo and their dependants.

Imagine if the survival, well-being and happiness of another fellow human is dependent on you all the time for as long as you live. Can you even have time to think? Do you even dare to feel?

Soo’s story touched me deeply. I am a doctor and a mother of three children – two of them, now aged 16 and 23, diagnosed with autism, attention deficit hyperactivity disorder and developmental coordination disorder. When they were younger, every day meant tending to them from early morning till late at night. I was lucky to get six hours of uninterrupted sleep. 

The children’s sensory differences and social challenges mean they have more functional challenges and emotional needs than most. They break and lose things more often because of motor coordination and attention challenges. 

So they needed help with eating, dressing, washing, travelling, learning, toileting, sleeping and socialising. I had to be cook, maid, driver, counsellor, teacher, therapist, case manager, advocate, doctor, nurse and mother all rolled into one. To pay for the hefty cost of services for them, my husband worked day and night, so I was also handyman, changing light bulbs and clearing clogged toilets.

At one stage, I decided to step away from my career and focus on my children.

In Singapore, many caregivers of autistic children give up their personal aspirations and careers in the face of caregiving demands. Others struggle to maintain their positions or progress in the competitive job market under the burden of caregiving stress. Research shows that caregivers have more mental health needs than the general population, even more so if their loved one has autism. Beyond depression, anxiety and burnout, they are also at risk of complex post-traumatic stress disorder.

Yet, as a person, we each need to retain self-worth and find meaning for existence beyond the daily grind of caregiving. 

The Taskforce on Assurance for Families with Persons with Disabilities is reviewing how support for people with disabilities can be strengthened across life stages. Recommendations are to be released in the next few months. 

I hope for bold, creative and outcome-driven solutions to implement truly inclusive healthcare, education and justice systems for those with autism and other disabilities, and help for their caregivers. 

How it tests you, mentally and physically 

The realities of parenting young autistic children include preparing special meals because of their dietary needs or sensory sensitivities. Helping them with brushing their teeth and showering beyond the usual age children learn to do this. 

Worrying that they might – yet again – get into trouble with classmates and teachers. I became weary of apologising after each crisis. The worst is to see the fear, hurt and disappointment in your kids’ eyes when they try to regulate their emotions or grasp the meanings of situations and yet fail, are rejected or misunderstood.

With hyperactivity, inattention and poor navigational skills, they tend to get lost in public places. So when they were young, I carried them while we were out. 

When they were older, I chauffeured them to therapy, tuition, doctors’ appointments and dental appointments. I could not just choose a nearest service provider because not everyone knew how to help my children. Now that they have learnt to take public transport, I follow their movements on GPS trackers. 

My memory and organisation skills were tested in managing their multiple medications and appointments. Monitoring and supporting their learning meant I was teacher-cum-therapy assistant at home. In addition, I had to learn effective communication to liaise with school and therapists, and to advocate educational support. 

Amid this, our other child who is neurotypical suffered in silence with what turned out to be glass child syndrome – when someone with siblings who have high support needs feels emotionally invisible.  

When this child entered the difficult teenage years, I was stretched just to meet all their needs, let alone those of my marriage and job. 

Life, even now that they are older, is a constant factory line of problems. One cannot help but become hypervigilant, discouraged, doubting of self and others, unable to sleep, think, or feel like a normal human. 

The shock of having an autistic child

Few Singaporeans grow up around people with autism or disability. About 1 per cent of our population is autistic, likely to rise to 3 per cent. Those with autism did not go to school with me or move about in the community much when I was growing up. 

They were out of sight and “put away” in special schools, kept at home or institutionalised in hospitals or homes. So when my husband and I became caregivers to our children with autism, we were hit by a cascade of questions: “why us?”, “what is this (disability)?”, “how are we going to do this (caregiving)?” and “what will happen to us and my beloved child?”. There were more questions than answers, and more bad news than hope. 

There were times I crawled into my bed but could not sleep. I would get on my knees and pray to find the peace to close my eyes, knowing that when daylight came, I would have to get going again.

My children were deemed to be of low support need, and I have financial stability and am well-resourced. Life is much harder for caregivers of children with higher needs or families in tougher circumstances.

Medical, allied health, school and social professionals always tell me there is something more that I need to do, or could do better. But do these professionals really know what it is like to live with autism 24 hours a day, seven days a week, month after month, year after year? 

They try their best within the limits of their job description and system provisions. Even as a medical professional, I sometimes do not know how to help my children, because they are my children, not my patients. For problems that professionals cannot solve, they can walk away, but I cannot.  

The toll on relationships

Relationships with spouses, family members and within social circles are rawly tested. Grief journeys and coping mechanisms differ. Often women respond emotionally and need to talk things through, while men plunge into logical solutioning and stoic silence.

My husband and I have different parenting and discipline styles. Our expectations of family life are shaped by childhood experiences, world views and values. 

When we had differing opinions about special school admission and approaches to help our children, our marital relationship was greatly strained. 

I saw many other marriages similarly tested in the fire of disability. Some came out bonded stronger like mine, but some disintegrated beyond repair. 

Some families implode internally. Marriages break apart when one parent decides to abscond from, or relinquish, their role as caregiver. Some blame the child and resort to domestic violence, culminating in removal of the child by protection services. 

A well-meaning fellow caregiver told me recently that God chose us to be parents of our children with disabilities because we are “good”. My heart sank.

It was meant to be encouraging, but I felt guilty and sad as I knew that very often I could have been more patient with my children, my husband, the teachers, doctors, and therapists. Or I should have been more forgiving with various people I encountered on the MRT who saw my autistic son and were rude to us. 

When we become caregivers, we often want to hide away to grieve. So we lose friends gradually. But to survive this journey, we have to intentionally make new ones to cheer us on.

We lose dreams, but we must find the courage to dream different dreams to give hope for each new day. We lose jobs and promotional opportunities, so we need prudent financial management and wisdom to safeguard the future of our children. 

A wish list for caregivers

When middle age struck, my body gave way. Three operations and multiple health problems in the span of five years taught me that I have to care better for myself, in order to care longer for my children even as adults. 

I began to learn to say “I cannot”, “I need a break”, “please help me”. Forgiveness and self-care are essential survival skills for a caregiver. 

I started CaringSG in 2020, a non-profit initiative to support caregivers of children with special needs. It has served more than 5,000 caregivers. I was also a steering committee member for the Enabling Masterplan 2030 and co-chaired the Alliance for Action for Caregivers of Persons with Disabilities. These national initiatives help develop solutions related to support for caregivers. 

As for the impending task force recommendations, to prevent families like Soo and Lu from slipping through the cracks of our society, we need intentional and tighter care coordination across life stages. Embedding mainstream funding for caregiver support within the provision of disability services would ensure programme sustainability. 

In the workplace, I hope for more support for caregivers to find and stay in jobs. Work gives dignity, purpose and relief. With a job, caregivers can continue to contribute income taxes and to the nation’s economic growth. With the Tripartite Guidelines on Flexible Work Arrangement Requests, I hope more employers will support caregivers’ requests for flexi-place, flexi-time and flexi-load options. 

For businesses, supporting a worker who is a caregiver could reduce needless turnover and boost employee engagement. 

Ultimately, a caregiver’s well-being is proportional to the amount of societal support.

Some caregivers stop hoping for help, accept the status quo, and stay in “bubble” lives of seclusion. In CaringSG’s CAREkaki programme, we visited homes with grassroots workers. It was not surprising to find those with disabilities or autism locked away in the home with aged caregivers. 

On the other hand, many caregivers have grown new businesses and spearheaded ground-up initiatives.

My wishes are for more medical, allied health, social service and educational professionals to go into our homes to know our lives and our children better. When things do not work out as expected, please stick with us to search for new answers together. 

And also that when we caregivers are no longer able to look after our children, we would like to know there are dignified and trustworthy care options so our children will not be left behind and forgotten. 

Family, friends and professionals – all of society – walk with us. We need you.