A Father’s Quest in Advocating for Son with Autism (Caregivers’ Specials)

To commemorate Autism Awareness Day which falls on 2 April, we bring you the second instalment of the Caregivers’ Specials. Here, we tell the story of Mr Raj, father of [...]

To commemorate Autism Awareness Day which falls on 2 April, we bring you the second instalment of the Caregivers’ Specials. Here, we tell the story of Mr Raj (above, far left), father of 22-years-old Kirisnah (above, second from left), who has Autism Spectrum Disorder (ASD). Kirisnah is now a trainee at SPD Sheltered Workshop.

Mr Raj remembers the time when his son Kirisnah was diagnosed with ASD about twenty years ago. He and his wife had noticed that Kirisnah was not communicating well. In addition, Kirisnah’s pre-school teachers feedback that he was aloof and seldom interacted with his peers. A medical and psychological assessment revealed what the couple had feared.

“It was a big blow to me and my wife. It took us some time to come to terms with Kirisnah’s condition. But we tried to help him as much as we could by putting him in various therapy like speech therapy, occupational therapy and sound therapy,” shared Mr Raj, who is a former full-time educator.

To cater to Kirisnah’s learning needs, the couple enrolled him in a special education school. The structured learning environment suited Kirisnah and he did well in national exams. When the time came for Kirisnah to transit to the Institute of Technical Education (ITE), Mr Raj and his wife started to get concerned. Their thoughts were echoed by Kirisnah who was worried that he might not assimilate well in a mainstream school environment.

The impact of the transition was no doubt a huge one as Kirisnah struggled to adapt in his first year at ITE. After discussing with his wife, Mr Raj converted to become a part-time educator to better care for Kirisnah. Mr Raj also picked up driving to ferry Kirisnah to and from school more conveniently.

Mr Raj and his wife were extremely proud to attend Kirisnah’s ITE graduation ceremony

Logistical matters aside, Mr Raj also played a pivotal role in helping Kirisnah navigate campus life. When Kirisnah had difficulty understanding social situations, Mr Raj will step in to rationalise and explain to him why people behave in certain ways. He also went the extra mile to speak with Kirisnah’s friends in ITE so that they can better understand his condition.

To Mr Raj, it is understandable that the public may not fully understand what autism is. He admitted that he too was “ignorant” about the condition until he had Kirisnah. He said that the key here is to explain the condition to those who are unaware.

He felt that one of the ways to raise awareness of such conditions is by creating more opportunities for the public to interact with individual with disabilities. To this end, Mr Raj encourages parents to bring their children outdoors more frequently so that more of such interaction opportunities can arise.

There will definitely be people who judge because Kirisnah looks so normal on the outside

Developing a thick skin has made it easier for me to bring Kirisnah outdoors. There will definitely be people who judge because Kirisnah looks so normal on the outside. They may be thinking why is a big boy having a meltdown in public. But people will usually understand after I explain to them that my son has autism, shared Mr Raj.

Besides promoting awareness among the public, Mr Raj is also active in an online support group for caregivers of children with ASD. Over there, he often shares his experience with other caregivers and points them to relevant community resources for further support.

Mr Raj was thankful for the support network which has helped him greatly. The valuable information shared by other caregivers in the support group, as well as the support from his family made it easier for him to push forward in this journey.

Recognising that it would be equally, if not more difficult, for his 14-year-old daughter to make sense of her brother’s condition, Mr Raj and his wife made sure to communicate with her regularly. Growing up, Kirisnah’s sister did wonder why her brother is different from her friends’ siblings. But over time, she learnt more about his condition and the ways to interact with him better.

Growing up, Kirisnah’s sister did wonder why her brother is different from her friends’ siblings but over time, she learnt more about his condition and the ways to interact with him better

“We often create opportunities for the siblings to bond. For example, we will get them to buy gifts for each other on their respective birthdays. We also ensure that we spend time with them both individually, and as a family,” shared Mr Raj.

With more understanding towards each other, their sibling relationship has slowly, but surely, improved over time.

Witnessing Kirisnah’s development throughout the years also makes Mr Raj feels heartened. He recalled the time when Kirisnah first found employment in a laundry company. His good performance earned him a permanent offer by his employer. However, to his parents’ surprise, Kirisnah declined the offer. What surprised the couple further was Kirisnah’s reply.

He told us: “I have decided that the work is not suitable for me”. It is these three words “I have decided” that moved us deeply. My wife even broke into tears. But these were tears of happiness. Because for once, our son made his own decision. For all his life, we were making decisions for him, like the schools to attend and so on. This ability to think for himself showed us that he has matured, shared Mr Raj.

Despite this, Mr Raj still worries about his son’s future. To ensure that Kirisnah can support himself independently, Mr Raj is planning to take over a mini mart after he saves sufficient funds. This will allow him to work alongside Kirisnah and teach him how to be independent. He is also planning to set up a Special Needs Trust Fund so that Kirisnah can be well taken care of in future.

“My hope for Kirisnah is to be independent after my wife and I are not around. We are training him as much as we can now so that he can take care of his own day-to-day needs, and his sister need to only come in to assist him in times of crisis,” said Mr Raj.

To help fellow caregivers of children with autism aged three to seven years old, Mr Raj and a group of caregivers will be conducting a free workshop on 17 April or 22 May 2021. The workshop aims to equip caregivers with strategies that can be used daily to interact and teach their children. The project is funded under the SINDA Community Impact Fund (SCIF). Caregivers can register their interest here.

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