“Many people do not realise how difficult it is for families that have members with autism when they go on a trip,” says Dr Paul Wong Wai-ching, associate professor in the department of social work and social administration at the university. “One big problem for autistic people when they go out of their comfort zone is sensory challenges, which can make them feel overwhelmed, confused or even scared,” he says.

A holiday overseas is often an enjoyable treat for most people but for autism sufferers (and their families) it can be a nightmare because they cannot adjust to sudden changes in their routines, adds Wong.

As a result, they tend to retreat, resist attention, and avoid people, even those familiar to them.

“It may lead to an increase in their desire to be left alone or an increase in their repetitive behaviours as a way to escape confusion. Some even have trouble sleeping. In some serious cases, they may even have seizures.”

The problems that crop up during a short holiday pale in comparison to the everyday autism sufferers face.

According to the US Centres for Disease Control and Prevention, about one in 59 children in the US live with autism spectrum disorder (ASD), the term that covers autism and other developmental conditions such as Asperger syndrome of differing severity and with a wide range of symptoms.

In Hong Kong, government figures show there were more than 10,000 autistic students in the 2017/18 school year. However, the Autism Children Foundation puts the number of autism sufferers in Hong Kong at 25,000, and says many face long waiting times for government-subsidised rehabilitation services such as intensive training programmes.

With World Autism Awareness Day falling this week, on April 2, the film Maria and I serves as a timely reminder of the difficulties and needs of those who live with autism and their families.

Based on studies over the past 50 years, the global prevalence of ASD appears to be on the rise, with an estimated one in 160 children in the world affected. However, Wong says this figure is a gross underestimate, reached by a method far less rigorous than that used to arrive at the US figure of one in 59 there.

There are many explanations for the significant increase in sufferers, including improved awareness of the condition, expansion of diagnostic criteria, better diagnostic tools, and improved reporting.

About 70 per cent of sufferers have at least one coexisting condition such as mental retardation, attention deficit hyperactivity, anxiety, or oppositional defiant disorder (hostile behaviour towards parents or authority figures). The most common coexisting condition is an intellectual disability, affecting 54 per cent of people with autism.

There is no known cure, but early intervention is a child’s best hope for coping with ASD. However, one of the main concerns for medical professionals is that the average person is diagnosed with ASD when they are four.

“This is particularly concerning because research indicates that the earlier we identify characteristics of autism and the earlier that interventions and treatment can begin, the better the outcome,” says Wong.

Last year, awareness focused on the importance of empowering women and girls with autism and involving them and their representative organisations in policy and decision-making to address the challenges they face.

On World Autism Awareness Day, a look at how the disorder was named

This will remain a priority because women with autism will continue to be highly vulnerable. They are more likely to be marginalised and in general, they are also more likely to experience physical, sexual, psychological and economic violence than men.

Another aspect often overlooked is the mental well-being of carers, Wong says.

“They are more likely to suffer from mental health issues than parents of children with no disabilities. Autism is a persistent developmental disorder. The family members not only need to take care of their children for years, but also bear social discrimination.

“It is because many people mistakenly believe the problem stems from parenting styles. Studies have shown that these families have a high rate of divorce, and child abuse is more common than [in] other families,” Wong says.

Because of the public’s poor understanding of autism, parents in Hong Kong are often criticised by others for “not knowing how to teach their children well”, he adds.

For years, families with autistic members and their community have been fighting to strengthen the capacity of public services to address ASD and other developmental disorders. The goal, as set by the World Health Organisation, is to recognise the need to strengthen the ability of governments to promote optimal health and well-being of individuals with ASD.

With the right services and community support, people with autism can lead happy and productive lives. In order to achieve that there needs to be a mindset change to shift from a “cure” or “medical treatment” to one of “inclusion” and “quality of life” because they need lifelong support, says Dr Andy Shih, senior vice-president of Autism Speaks, a US-based research organisation studying treatments for people with the disability.

Unrestricted access to high-quality health care, education and community and social support are essential, Shih says.