TEN years ago, Noraza Yusof embarked on a painful and lonely journey to understand autism. After her son Mohammad was diagnosed with the condition, she was looking for answers that could help him.
However, the lack of awareness and support groups in Malaysia at that time made it impossible. When her son’s condition was confirmed, she and her husband still did not know in detail what to expect.
The only advice she received was that her son was different from other children and that there would be challenges in managing his condition.
She had to do her own research on the Internet and read a lot of books about autism. It was then she realised that her son had displayed some of the indications that he had autism. These included hand flapping and not talking, even at almost 2 years old.
“He had good eye contact but was non-verbal. I thought it was normal for some children to have delayed speech. But after reading about autism, I finally knew that being non-verbal is a red flag.
“During my research, I got in touch with other parents in the US, Europe and Australia who shared their experiences and the latest developments there.
“That’s when I learnt more and more about autism, the signs and the changes my son would go through as he grew older. I did over a decade of research about my son’s condition and how to deal with him.”
NEVER HIDE
Noraza says while awareness of autism in Malaysia has increased since then, there is still a lot of work to be done. Those in the service industry, especially, need to know that a child with autism can have meltdowns triggered by loud noise, crowds and lights, among other things.
Based on her experience, public places in the nation are not autism-friendly compared to other countries.
For example, when they went to a cafe in Glasgow, Scotland, Noraza told the server that her son has autism. The server immediately chose a table far from the crowd and near the exit, switched off the music, dimmed the light and offered gluten-free choices for her son.
In comparison, when she took her son, now 11, to a restaurant in Kuala Lumpur, it was a different experience. Despite explaining about her son’s condition and asking for a table at a secluded area, staff refused to comply.
“Another bad experience was when we went for a boat ride at a tourist attraction. There was a queue which I knew my son could not deal with. I asked the person at the counter if we could go first because my son has autism. She said there would be no special treatment for him.
“It made me sad because I did not ask for special treatment but a little bit of understanding about my son’s condition. People who own or run restaurants, shopping malls, tourist attractions or other public places must make sure their employees have basic understanding of autism. When the management engages in awareness programmes, employees will create an autism-friendly environment.”
Lack of support is probably the reason many parents decide not to bring their autistic child to public places. But to Noraza, it is the wrong move because they should never hide their children and should let people know about their condition.
“Parents can take them to public places in stages. When my son was younger it was easier to handle him in a crowd. But as he grew older, he would have meltdowns or refuse to move when he was stressed.
“A specialist advised us to introduce him to crowds slowly. Initially I took him to shopping malls at 9am, we would have breakfast and by 11am when people arrived, we would leave.
“The next day, we would go at a different time, stay for a short while and leave. We continued to do this every day at different times so he got used to crowds. We did not force him but we wanted to normalise the situation for him.”
PARENTS’ STRUGGLE
Awareness of autism should not focus only on the child but also the parents. Parents are dealing with many issues and at times they are overwhelmed, confused, angry or depressed.
“We need to focus on parents’ struggles and depression especially when their child is non-verbal. I was depressed at first because my son could not communicate with me. I didn’t understand what he wanted, I didn’t know how to help or reach him. I was struggling and one day I cried in front of him.
“To my surprise, he picked up a tissue and wiped my tears. That was the last time I cried. I told myself I needed to be strong for him and let him know I am there for him.”
Noraza’s experience prompted her to organise the first Embrace Autism event last year, which is free of charge and open to the public.
The event is designed to raise awareness of autism, with a strong focus on parenting children on the autism spectrum, and to heighten community awareness of the need to be more open, inclusive and accepting.
“The response to last year’s event was overwhelming, so we had another one this year. This year I wanted to make it more meaningful and highlighted topics related to my journey such as the financial impact, special diets, warning signs which can lead to early detection and intervention and creating future potential for children with autism.
“Other parents also shared their experience which was really helpful. I hope to hold the event every year because we need continued education and awareness on autism.”
This year’s event was officiated by Tunku Puteri Johor Tunku Kamariah Aminah Maimunah Iskandariah Almarhum Sultan Iskandar. The programme included talks by autism experts and an auction of art created by individuals with autism, of which, part of the proceeds went to the Hope Project, a non-profit initiative by Early Autism Project Malaysia.