Lessons from a Life of Resilience - Living with Autism

April is World Autism Awareness Month, a time to celebrate the strength and resilience of people with autism and their caregivers and advocates. Autism, also known as Autism Spectrum Disorder (ASD), is a complex neurological condition that uniquely affects individuals. The severity of symptoms and individual differences mean that the needs of people with autism can vary greatly.

In Singapore, it's estimated that one in 150 children is on the autism spectrum. However, there's a growing gap between the supply and demand for services for people with autism who are over 18 years old. In the last three years, the number of Special Education school (SPED) graduates has increased by an average of 5 per cent per year, highlighting the urgent need for more support in this area (Shafeeq, 2023).

To better understand the needs of people with autism and their caregivers, Social Gifting spoke with Serene, a mother and caretaker of two autistic children, Bryan and Bernice. Bryan is a mid-functioning autistic person with limited social interaction and narrow interests, while Bernice has severe deficits in verbal and nonverbal communication skills and requires significant support.

“You don’t have your lifestyle, when you wake up until you go sleep, you just have to follow what her pattern is,” says Serene.  Serene is a dedicated caretaker who adheres to her children's routine day and night, every day of the week and every month of the year. She ensures that Bernice is well looked after at all times, even when she is asleep.

Serene shared that there are several common needs that individuals with autism often share.

Having a Routine and Structure is crucial for people with autism.

“It is very important for autistic children to follow the routine very closely,” says Serene.

A predictable routine and a stable environment can help reduce anxiety and stress. For example, Bernice watches cartoons on CDs and pastes the covers in her book, which is part of her daily routine.

"For instance, if she doesn't do her hobbies and we take her out, she has the tendency for a meltdown. Therefore, we usually plan ahead so that she can finish her routine tasks before we pursue our own activities."

If she doesn't follow her routine, she may become anxious and start acting out. When this happens, Serene brings her to a "calm room" equipped with air conditioning and padded walls to stabilize her mood and prevent her from hurting herself.

Communication support, Understanding and Acceptance are also essential for people with autism.

Bernice experiences challenges with communication, social interaction, and exhibits repetitive behaviours. It is crucial to recognize that these behaviours are inherent to her condition.  Bernice is non-verbal and does not understand social cues.

“I find that if I get her involved in more things, I can be more helpful.  After these hobbies, we will prepare and, eat dinner together.” Bernice joins Serene in preparing dinner, helps cut vegetables, break eggs, and seems to enjoy household work.

Serene finds that involving her in more activities can help develop her communication skills. However, Bernice still needs social interaction to improve her communication, and Serene is grateful for the volunteers who spend time with her.

Caregiver Support is another critical need for people with autism.

“I don’t have my own lifestyle, every time I need to go out to buy something, I am worried about what might happen.” 

Serene also copes with her own health issues, such as diabetes and high cholesterol, which can be overwhelming at times.

“One time I went to see a polyclinic doctor, I was talking to the doctor and suddenly while I was talking, I started crying.   So the polyclinic doctor referred me to IMH, I have been on daily medication from IMH for some time”

Serene provides round-the-clock caregiving for her children without a break. She has tried entrusting Bernice to other family members, but it didn't work out.

"While driving to pick up Bernice from one of her activities, I was suddenly overwhelmed by an urge to drive my car into a tree. The thought came out of nowhere and terrified me. I pulled over and called my husband, tears streaming down my face. In that moment, I realized I needed to talk to someone about what was happening inside me."

After this incident, Bernice sought medical support, her doctor increased her psychiatric medication which made her feel better.

She hopes for more support for caregivers like herself to alleviate stress.

Serene began doing drinks delivery in the evenings and initially brought Bernice along. However, during their first delivery to a family who had ordered the product, Bernice had a meltdown, so Serene had to bring her back home and complete the delivery on her own.

“I continue to do it because it is a good thing for me, I can exercise, and secondly earn a bit of money for daily use.   After the product delivery, I usually sit here, take a sip of water, and then rest for a while before going back to see Bernice again.”

Education and employment support are crucial for people with autism who have limited choices after graduating from SPED school.

Many are not suitable for open employment or sheltered workshops due to behavioural issues, leaving them with few options, such as attending a Day Care Centre. However, the average waiting time for admission is around 3 to 5 years, which can be a long period of disengagement for individuals with autism.

"A year ago, we began doing diamond artwork as a hobby and would paste them on our cupboard after completion. One day, a social worker from school noticed Bernice's talent and recommended Social Gifting to us, a platform that helps sell handmade gifts online. Since then, we have been making diamond artworks and passing them to Social Gifting, who handles the selling and gifting of our products. This has now become Bernice's home business." says Serene.

Bernice discovered Social Gifting through Rainbow Centre's Micro-Business Academy (MBA) programme, a pilot initiative started in 2020 to create self-employment and meaningful work for persons with disabilities. Through Social Gifting, Bernice crafted beautiful items and connected with corporate clients to offer tailor-made corporate gifts.  Her exquisite crafts can be found @ https://www.social-gifting.com/collections/bernice.  At Social Gifting, we believe that home-based jobs tailored to their unique abilities can help them achieve their full potential.

“I think the most important thing I have learned from Bernice is to take things slowly.  I am a very rush person.  However, Bernice has taught me the value of slowing down and taking the time to appreciate what I'm doing.

I don’t need her to be a successful person.  Healthy, healthy is most important, and happy. 

I hope you now know what it is like to be in my shoes as Bernice’s mother.”

Through this sharing, Serene hopes to raise awareness of the challenges faced by people with autism and their caregivers, especially highlighting the fact that adults with Autism are disengaged at home and need home-based work to provide them with routine and a purpose in life. 

It's important to note that every individual with Autism is different, and their needs will vary. Therefore, working with them, their families, and professionals is vital to identify their specific needs and provide the appropriate support in areas such as routine, structure, communication, caregiver support, education and employment.  By doing so, we can help individuals with autism to thrive and reach their full potential and work towards building a more inclusive society.