SINGAPORE: For over 40 years, Dr Dawn-joy Leong struggled to come to terms with some of her eccentricities and social awkwardness.
She had always known that she was different from her friends and relatives, but couldn’t figure out why.
It was only 10 years ago, when she was 42 and her struggle neared breaking point, that she discovered that she was on the autism spectrum – and it all made perfect sense, as people with the disorder sometimes face difficulties communicating and interacting with others.
Unlike autistic children who are diagnosed early and if need be, attend special needs schools, Dr Leong attended a regular school which turned out to be daunting - at times, even traumatic.
Dr Leong is extra sensitive to sound and light, common among people with autism spectrum disorder. “School gave me endless meltdowns. I spent all my energies in school coping with the lights and the sounds.
“Classroom sounds were excruciating because the children dragged their chairs and desks were moved around,” she recalled.
‘I COULD HEAR CHICKENS SCREAMING’
The sensory overload also resulted in her having frequent meltdowns at public places such as wet markets.
“I grew up at a time where the wet markets allowed the fresh slaughter of chickens. I could hear the chickens screaming and the water boiling.
“For a regular person, it was probably nothing, part of the background noise. But in my head, it was like an orchestra, very loud,” recounted Dr Leong, now 52.
That hypersensitivity to sounds, lights and textures meant that she was susceptible to nausea and vomiting.
I would start to get headaches. It felt as if there were knives stabbing through my ears, going in this way, coming out the other way.
Her young sister Ms Althea Leong remembers the frequent meltdowns in school, and how Dr Leong would cry, scream and refuse to listen to the teachers’ instructions.
In her report card, her teachers frequently remarked that “Dawn was argumentative, too talkative and too rude. She has to learn to smile more, to be more friendly, to mix around more”, Ms Leong recalled.
It was a relief, she said, when her older sister found out about her condition in 2007 – somewhat by accident.
Dr Leong had decided to seek psychiatric help after dealing with the stress of studying abroad, living on her own, and coping with her father’s death, which had left her feeling suicidal.
‘I’M NOT BAD, I’M NOT EVIL’
Dr Leong said that it took three sessions before they diagnosed her with Asperger’s syndrome, a condition on the autism spectrum.
“He (the doctor) said ‘actually, you’re not going out of your mind, you’re not a bad person. You have Asperger’s syndrome’.
“It was a wonderful feeling. I am not bad, I am not ill, I am not evil - I am just autistic. It gave me an explanation for why I would react in certain circumstances, my social confusion and especially the sensory difficulties. Why would I have a breakdown at the wet market?” she said.
Watch: How Lucy, her assistance dog, helps her cope (3:00)
Contrary to what many think, autism is a wide spectrum and Dr Leong is not an anomaly: As many as 1 in 150 adults have it.
The programme On the Red Dot (Fridays, 9.30pm on Mediacorp Channel 5) profiles special needs individuals like Dr Leong, focusing on how they cope with their condition and how the community tries to help them.
Autism in adults is harder to diagnose as it may be more difficult to assess their childhood development. Autism spectrum disorders are diagnosed by obtaining detailed developmental history from these patients’ parents, through observation of their behaviours and also psychological assessments.
For Dr Leong, she’s grateful for some of the help that she received in her earlier years, despite her oddball ways.
For example, she had applied to a music programme at the University of Hong Kong after failing her A-Level examinations. The university offered her a probation placement on the condition that she re-take and pass her A-Level examinations.
Some of the professors, on seeing her potential, even helped her to prepare, and she was subsequently admitted. “I was still the odd kid but in a music programme, I think every kid is odd,” she said.
‘RESPECT US AS HUMAN BEINGS’
Since her diagnosis in 2007, Dr Leong has focused on portraying autism through art and music.
She has a Master of Philosophy degree in music composition from the University of Hong Kong and a PhD in autism and art at the University of New South Wales in Sydney.
Today, she is well known and respected in the autism community for her activism and art aimed at helping people better understand autism. She said:
Autistic people like myself, we just hope for respect as human beings and an understanding of our culture.
Nurse Siti Zulaiha Md Erfan, who has worked with autistic adults, said that society is generally more receptive to autism in children and the elderly than in adults.
In the support groups that she attends, the 37-year-old said, the adults with autism look up to Dr Leong and her works. Madam Siti’s own 10-year-old child is autistic, and she is worried about whether society will accept him when he’s an adult.
“When people see a young adult (with autism) talking to themselves or flapping their arms, people will think that these people are crazy, and no help will be given.
“I’m not really worried about him taking care of himself. I’m more worried about how society is going to accept him,” she said.
Watch this full episode of On The Red Dot here.