By Batrisyia Jay
As April is Autism month, it is only fitting for us to get to know more about one of the disorders that is being diagnosed more and more often the world over. With its many forms, symptoms, and different treatment methods, Autism is without a doubt one of the most confusing disorders to come across, especially for parents who are caring for a child with Autism.
Autism, or autism spectrum disorder (ASD), refers to a range of conditions that challenges the social skills, speech, non-verbal communication and repetitive behaviours of an individual.The Centre for Disease Control (CDC) in the United States reports that the incidence of autism reaches one in every 68 children in the United States. According to The National Autism Society of Malaysia (NASOM), this means that around 9,000 children in Malaysia are born with autism every year.
Unlike other disorders, Autism has many subtypes—most of which are influenced by a combination of genetic and environmental factors. The disorder is also referred to as autism spectrum disorder with the term ‘spectrum’ denoting the wide variety of symptoms within ASD because each individual with autism has a distinct set of strengths and challenges.
No two individuals with autism are the same; they learn, think and solve problems differently—which means that they can range from highly skilled individuals to severely challenged ones. Thus, some individuals with ASD might require substantial support in their daily activities, while others may need less support and are even able to live independently.
In order to get more familiar with ASD, the following is a list of the top four things that one should know about the disorder:
No Two ASD Individuals are the Same
As explained above, ASD does not have a specific set of symptoms, as they are extremely diverse. For instance, a classic sign of autism in a child is flapping, spinning, and a difficulty focusing on a specific object or person. Nonetheless, there are also many children with autism who are bright, extremely verbal and well-behaved—which is why individuals with the disorder are never classified in one specific manner.
However, what every individual with ASD has in common is a lack of social interest that eventually disrupts and impacts their day-to-day functions. The lack of social skills and interest—added with inadequate social motivation—are what sets them apart from other children.
There Are Many Factors Causing ASD
Many are often curious as to what causes autism. However, as is with a complicated disorder such as this, there are many factors that cause ASD in an individual. For instance, substances or medications that a mother takes during pregnancy, such as alcohol or even certain seizure medications, can lead to a child developing ASD as he or she continues to grow.
On the other hand, brain abnormalities—such as those impacting the structure of the brain or the function of the brain, like infantile spasms— as well as many other genetic abnormalities and syndromes play a vital role in triggering ASD in an individual. Vaccines are not part of the causes of ASD.
Adults with Autism are Able to Perform at Work
Unknown to many, most individuals with autism are able to develop much-needed workforce skills once they reach adulthood. Be that as it may, as awareness on autism is still lacking in society, the risk of these individuals being dismissed from their job is high as they will still have difficulties in socializing and might have developed certain repetitive habits that are out of the norm in society.
Thus, businesses, beginning with the government sector, should increase awareness about autism among employees, and incorporate autism-friendly rules into their policies, such as providing flexible working hours and a defined job activity, in order to benefit from the unique talents of these individuals.
Autism is Harder to Detect Among Women
One of the factors about ASD that many are unaware of is that it is harder to be detected among women compared to men. Girls and women who have ASD are oftentimes overlooked, as professionals tend to emphasize that the disorder affects boys and men more. As a result, these women are often left undiagnosed up until they reach adulthood— where the symptoms become more obvious.
Moreover ASD among girls and women often includes cases of high-functioning autism, the signs of which are very different from those in boys and men. For instance, girls with ASD might have fewer restricted interests and repetitive behaviours compared to boys with ASD. Oftentimes, girls with this disorder have more socially acceptable types of skills and interests, resulting in them being better at masking their autism compared to those of the opposite gender.
To commemorate Autism month, Selangor Journal would like to celebrate mothers who are caring for children with ASD. On that account, we invited Hasbe Zuraini Abu Bakar, mother to 10-year-old Luqmanul Hakim, who was diagnosed with ASD at the age of 10 when he failed to show good social skills at school and outside school, to share her experience with ASD.
Hasbe Zuraini Abu Bakar was born in Kuala Lumpur but was brought up in Petaling Jaya.She is now living in Kuala Terengganu with her family and has been there for more than 16 years. The 47-year-old mother to Luqmanul Hakim, who is fondly known as Luq, quit work to focus on her son’s UPSR examination four years ago and is now a part-time drama and English coach.
The now 16-year-old Luq was diagnosed at the age of 10 with ASD when he failed to show good social skills at school and outside school. “He didn’t have any developmental delays, so we dismissed his quirkiness and some of his weird behaviours,” said Hasbe. As a result, Luq did not get the early intervention he needed. Upon diagnosis, Hasbe and her family quickly planned out his therapy and intervention programmes.
Hasbe would often sit down with her son to help him with his homework. At the time, Luq’s fine motor skills were still very low, so Hasbe and her family had to massage his hands and do therapy to help strengthen his muscles.“We had to create a more accommodating desk work environment for him so that he could focus on his homework. We sent him to a small private school so that he wouldn’t get overwhelmed with socialising, and we would often talk to his teachers for strategies to help him at school and with homework.”
Hasbe admits that she did not regret quitting her job in order to help Luq with his UPSR examination as he passed with flying colours. Luq was accepted to a local boarding school soon after his exam. Although some parents might be reluctant to part with a child who has autism, Hasbe said that Luq’s experience at boarding school was very educational for them.
“It helped us to understand more about ASD and puberty as his puberty hit him quite hard. He was diagnosed with depression the year he was taking PT3 and to this day, I thank God for the wonderful support he received from the Principal, the teachers, the wardens and his classmates,” said Hasbe. Luq once again passed his PT3 examination with good grades.
Hasbe is of the mind that the awareness level on ASD in Malaysia is still low.“Many are still confused at what autism is, as the majority still think individuals with autism are those with tantrums and slow learners. Some may think that all persons on the spectrum are geniuses with high IQ, while others may think that they have a mental illness,” explained Hasbe. She added that there are many factors contributing to the low awareness level in Malaysia and explained that one of the biggest contributors is social media, as there are many inaccurate postings or reports about autism.
Nevertheless, early intervention helps children with autism a great deal to grow up and overcome their issues. “Most ASD kids have other issues that co-exist with autism conditions, and many may have sensory processing disorders like my son. Others may have ASD and anxiety disorders, while some may have ADHD and other combination diagnoses as well,” said Hasbe.
Hasbe agrees with the notion that Malaysia has tried to accommodate kids on the spectrum. However, she is of the opinion that the country is still lacking facilities and specialists to cater for all the children with ASD. “The Welfare Department for a long time placed ASD under the Learning Disabilities category. Consequently, the National Education Department (JPN) places ASD kids along with [kids of other] disabilities in the same classroom. They need to know that the needs of these children are different, and the methodology and pedagogy should be addressed differently. Furthermore, kids with ASD need a lot more therapy support in order for them to be able to achieve academic skills,” Hasbe explained.
As a parent with an ASD teen, Hasbe feels that the community and the government can do much more to support these parents. “One of it is definitely [adding] facilities to help parents and their kids cope. Most kids with ASD can study and do well academically. However, they need more therapy time,” said Hasbe.
“It would help if there are centres such as these close to the schools or better yet, an Occupational Therapist (OT) in schools to help them. OTs can help the kids to get settled again after going through overwhelming situations at school. They can help the kids get readjusted and learn well in the classroom.”
The community should play a big role in helping out when it comes to parenting for children with ASD. For instance, parents should talk to their children about their autistic friends and explain to them how to help these children adjust at school, and how to help them to socialise. “Embrace autism as a good thing. Embrace neuro-diversity,” said Hasbe.
To parents of ASD children, Hasbe advises them to take one step at a time. “Cherish and celebrate each milestone your child has achieved. Don’t get discouraged, as challenges are always there in our lives,” said Hasbe.