Persisting with social stories
It’s challenging for those with autism to understand social cues but there are tools to help parents and teachers teach them appropriate behaviour.
THE challenges that individuals with autism have with fitting in socially, and society’s lack of understanding of their condition, were recently highlighted when a 22-year-old autistic man was detained overnight for allegedly molesting a woman.
In her plea for leniency after the incident, Ahmad Ziqri Morshidi’s mother Datin Hasnah Abdul Rahman said that her autistic son had the mental capacity of a child and was not aware of the consequences of his actions. The case highlighted the need for more sensitised and special protocols in dealing people with disabilities, and the police promptly said they will review their procedures.
For families with special needs children, Hasnah’s family’s experience is also a sobering reminder that they need to be proactive in managing their children’s behavioural issues.
It’s especially challenging because the core issue for persons on the Autism spectrum disorder (ASD) is their lack of ability to understand what is socially appropriate behaviour.
“People with ASD have challenges making sense of real life situations. They find social situations very confusing and difficult to read, and human emotions are not easy to comprehend because they aren’t consistent.
“They need to be taught how to approach people in a manner that is socially acceptable. Even a simple thing like how to look or not look at a person can be challenging. These are unspoken social rules that don’t need to be taught to typically developing children but will need to be taught to children with disabilities, especially those with autism spectrum disorders,” says Jacqueline Lingham, founder of Persatuan C.H.I.L.D. (Caring and Helping Individuals Learn and Develop) Sabah.
Because people with autism are often unaware of social cues or expectations, clear lessons about personal boundaries is critical, says Ministry of Health’s chief senior assistant director (family health) Dr Aminah Bee Mohd Kassim.
Sexuality education, she says, is crucial for children with special needs, both to keep them safe and help them develop into adolescence and adulthood.
“Just like all children, special needs children need sexuality education. And let’s just make it clear that sexuality education isn’t just about sex. Sexuality education is about so much more. It covers communication, emotions, personal dressing, touch, relationships and so many more. Our children are not getting enough of these important lessons,” says Dr Aminah Bee.
Dr Renuka Saseedharan Nambiar – mother of an adult autistic son and an occupational health physician who conducts training for parents with special children – believes that education is key.
“It is definitely a challenge because autism is a spectrum disorder with different levels of severity and expressive language and mental capacity. But it is important to assume intelligence in dealing with these individuals, even if they are not verbal. We need to show them appropriate behaviour through role play or pictures or social interaction.
“Parents need to have their eyes on their children at all times, particularly when out in public. This cannot be overemphasised.
And whatever the level of comprehension of the child, they should be taught that touching anyone other than family is not acceptable,” says Dr Renuka.
Sexuality education is a hard topic for any parent to broach and for children with special needs, particularly those with developmental disabilities, the job can be even more daunting.
“We always hope that our children with disabilities don’t begin to develop ‘feelings’ for the opposite sex but it happens. Talking to them about it helps, not brushing it aside. There is no ‘one size fits all’ approach we can take ... but different needs will require different approaches,” says Jacqueline.
As challenging as it may be, Dr Aminah Bee says that parents must recognise that sexual development is inevitable for all children, even those with special needs and that sexuality is a subject that has to be addressed.
“Many assume that their children with special needs won’t be able to understand lessons on sexuality. But they can understand and can learn. It just takes a lot of hard work because children with special needs require constant supervision and reminding,” says Dr Aminah Bee, who has a 29-year-old daughter with special needs.
Realising a need to support parents of special need children in this regard, Dr Aminah Bee developed a training module on reproductive health for children and adolescence with disabilities called “Live Life, Stay Safe”, in 2009.
The module is a guide for parents, teachers and caregivers of children with special needs on how they can teach sexuality and reproductive health education to children with different needs.
“Actually, the syllabus for sexuality and reproductive health education is the same for every child. What is different is how we deliver the lessons.
“We can’t teach a child with autism the same way we teach a typical child and what this module provides is suggestions and ideas for parents, caregivers or teachers on the different ways they can teach these crucial lessons,” she says.
The module covers both life skills (self awareness, communication skills, decision making, speaking up, building friendships, understanding relationships and interaction skills) and personal safety (body parts, feelings and emotions, relationship and touch and sexual abuse) and it comes with suggested tools (games, pictures, songs, cards) and methods of teaching children with different needs.
Although the tools are effective, Dr Aminah Bee says that the most important teaching tool parents need to employ is repetition.
“With special needs children, lessons need to be repeated daily. You can’t teach this as a one-off classroom lesson and expect them to understand and learn it. You have to keep repeating the lessons and relating it to different situations,” says Dr Aminah Bee.
Apart from teaching their children sexuality education, parents must also model appropriate behaviour themselves.
“Children model their behaviour after us, particularly special needs children. So if we are teaching them about public and private behaviour, telling them that they must only change their clothes in their bedroom or bathroom, we must do the same.
“We can’t change with our bedroom door wide open or walk around the house in an undressed state. We need to be mindful and we need to follow the lessons we teach them. Otherwise, they will be confused,” she says.
Sexuality education, she explains, goes beyond teaching children social rules.
It is also crucial for abuse prevention: a child who does not understand sexuality and abuse is less able to recognise or report abusive situations and are more easily coerced or manipulated.
While sexuality education is crucial, so is public awareness, says Jacqueline.
“It is unfortunate that it had to take the Ahmad Ziqri case to get everyone’s attention but we do need to make people aware and empower them with knowledge about people with disabilities. We can’t stop something like this from happening again but we can help promote a more inclusive society and take disability awareness and acceptance a level up,” says Jacqueline.
The Ministry of Health’s “Live Life, Stay Safe” training module is available online. Click on https://bit.ly/ 2Q9iKeW
Lemme Learn, a social enterprise that helps young adults with learning disability integrate into society, have social stories with illustrations and exercises for parents and teachers to teach about appropriate and inappropriate touch. The resource material (in English and Bahasa Malaysia) can be downloaded from https://lemme learn.com/read/menyentuh-orang.