Despite autism spectrum disorder (ASD) being understood as a lifelong condition, many still perceive it as a “childhood disease”, with developmental milestones in infancy and toddlerhood the main diagnostic criteria.

Annually, during April’s World Autism Month, programmes and activities are mostly organised for children, further solidifying this belief among the public.

And yet, those on the spectrum never grow out of autism.

In fact, as they grow older, they (and their caregivers) face different sets of challenges that may feel foreign and daunting.

Consultant developmental paediatrician Assoc Prof Dr Norazlin Kamal Nor says because of this perception, most resources on ASD are focused on babies and kids.

“But as people with autism grow up, they find that there are less and less places to get information from and this affects their well-being, not to mention their caregivers’,” she adds.

Assoc Prof Dr Norazlin was speaking after the launch of the Malaysian Autism Resource Foundation (MARF)’s website at the Tunku Ampuan Besar Tuanku Aishah Rohani Hospital, which is also the UKM Specialist Children’s Hospital.

The website, marf.org.my, is a one-stop site for parents, teachers, therapists and those with autism.

Assoc Prof Dr Norazlin, who also sits on MARF’s board, says a plus point of this website is that it’s a comprehensive resource for different parts of life for a person living with ASD.

“It covers information from their early years and school age to adolescence and adulthood, with explanation on a range of topics including behaviour, communication, emotional well-being and independent living,” she adds.

She says while there is a lot of information about autism in English, details in Malay and Chinese are limited.

“That’s why we have this website in three languages; to make it more accessible to more people so they can read up and understand,” she says.

MARF founder Dr Ng Sui Yin agrees. She says some websites in Mandarin require subscription so she hopes this free website will encourage Mandarin-speaking families to find more information about this condition.

A lifelong challenge

A paediatric neurologist, Dr Ng says an autism diagnosis is often the start of a challenging time for families.

According to a 2001 study titled “Families of adolescents and adults with autism: Uncharted territory” by MM Seltzer et al., “few disabilities appear to be more taxing on parents than ASDs”.

A 2023 article in Psychology Today explains that a marriage is more likely to be stressed when it has a child with special needs.

“Surveys show that the rate of divorce in families with a child with disabilities (in the United States) may be as high as 87%. The divorce rate in families with a child with autism is about 80%,” the article says.

Dr Ng says the divorce rate among couples with an autistic child is high because of the financial, emotional and physical strain that come with it.

“People are not properly empowered and they lack the knowledge and resources to manage these challenges. Hopefully, a comprehensive website like this will help them navigate this journey better.”

Dr Ng reiterates that this website does not replace consultations with experts, but she says at the doctor’s office, parents of an autistic child may feel overwhelmed.

“They could be bombarded with so much information that they might not know what to ask at that point. This website allows them to access information when they are ready,” she adds.

Dr Ng says an autism diagnosis is often the start of a challenging time for families. Photo: LOW LAY PHON/The Star

Debunking misinformation

Assoc Prof Dr Norazlin says misinformation about autism is rampant, especially online and on social media, so it is imperative that all the information disseminated on the website are verified by experts, including doctors, psychologists and therapists.

“There’s a lot of stress and anxiety in the lives of families with a child or children with autism. When people are stressed, they look for answers and sometimes believe unverified information,” she says.

An example of this misinformation is the use of hyperbaric oxygen therapy (HBOT) as a treatment for ASD. This involves breathing in 100% oxygen in a pressurised chamber. Proponents say this practice helps improve eye contact, social skills and awareness levels among those with autism.

A 2017 study by paediatric emergency physician Dr Teeranai Sakulchit said “currently, there is insufficient evidence to support the use of HBOT to treat children with ASD, and its use as a form of treatment is not recommended”.

Assoc Prof Dr Norazlin says a hyperbaric chamber might sound sophisticated and parents may be swayed by testimonials, but testimonials themselves are not solid evidence.

“In a worst case scenario, it can have fatal consequences, like a five-year-old boy in Michigan (in the US) who died during an HBOT treatment a few months back,” she says.

In January, the boy, Thomas Cooper, died in a hyperbaric chamber fire. His parents had taken him to receive multiple sessions of HBOT for sleep apnoea and attention-deficit hyperactivity disorder (ADHD) – the latter a condition that can co-occur with autism – at an alternative medicine facility.

“That’s why, for us, it is so important for everything published on the website to be verified, with robust research data to back them up,” she adds.

The website offers comprehensive information about autism for every stage of life. Photo: marf.org.my

Other issues about autism

Dr Ng says the website offers information and resources on other issues about ASD, beyond diagnosis and treatment.

“These include legal implications like OKU rights, the impact on other siblings and how to go about it, how to find balance in parenting and coping with loss,” she adds.

“There’s also a section on how to prepare someone with ASD for examinations, because some kids with autism can go through schooling and learning with other kids, but their caregivers need to employ certain strategies to help them thrive,” she says.

Assoc Prof Dr Norazlin says as a society, we still have a long way to go in accepting autism as a lifelong condition that comes with different sets of challenges across a person’s lifespan.

“We’re still working through that... there are still very few specialists who work with adults with ASD and we hope this can improve over the years.”

Inclusivity, she says, is a two-way street.

“We want people to embrace those with autism with respect and dignity, and we also want to educate those with ASD about other people and the world they live in,” she concludes.