Parents with autistic children need help to cope, say experts

CAREGIVERS of autistic children must be taught how to handle stress, experts said, as the number of parents suffering from stress or burnout rises.

Experts said that without education and support, parents with autistic children could develop stress disorders.

Autistic children behave differently from other children, requiring parents to learn new coping mechanisms. The abilities and needs of autistic people vary and can evolve over time. While some people with autism can live independently, others may require lifelong care and support.

Data from 2021 showed 589 children were diagnosed with autism spectrum disorder (ASD), up 5% from 562 in 2020. ASD is a neurological and developmental condition that affects how people interact with others, communicate, learn, and behave.

Occupational therapy lecturer Anis Zafirah said parents with autistic children need to be educated on how to handle their feelings and thoughts.

“In this modern era, young parents can get the knowledge needed by learning through social media such as Facebook and TikTok. The contents are all free and we can all learn from it, but parents have to identify the right person for them to listen to,” said Anis, a lecturer at a private university in Damansara.

Anis said there are support groups parents could join.

“There are groups out there for parents to join. There are also advocacy groups where parents can share their own experiences. Parents can also go for counselling, whether private or government sessions. They will be counselled on time management, behaviour management and how to train themselves,” she said.

Last week, The Vibes spoke to parents with autistic children about the challenges they faced. They said they suffered severe stress while raising their kids. Almost all of them said they had given up their careers to care for an autistic child.

National Autism Society of Malaysia president Megat Ahmad Shahrani Megat Sharuddin said the government must build more facilities to help parents with children diagnosed with ASD.

Megat, who has a 31-year-old autistic son, said the parents could suffer severe stress.

“More centres for autistic children should be created because the number of children diagnosed with ASD has increased," he said.

"Parents with ASD children suffer from stress because they are the ones who handle the kids on a daily basis, and autistic kids are not easy to handle. With more centres, parents are able to send their children for help, and they are also able to learn how to handle the kids better, thus reducing the stress.

Megat said support groups is one way to help reduce the stress faced by parents.

“By mixing with parents, they can communicate and share stories. Each child with ASD has different behaviour and skills. Through these meetings, parents can learn and add more knowledge on how to handle their kids.

"The stress is real; parents have given up their careers to be with them every day. That alone is not easy.”

Megat said the government has to play a pivotal role in addressing the issue.

“Make sure the infrastructure is there. Get more information out about autism, especially in rural areas. Get each mall to have a sensory room to help parents with autistic kids. There are many things that can be done to help not just the child but parents who struggle to provide a better life for their loved ones,” he added. – June 30, 2024.