AN undeniable inner strength radiates from the woman seated across me this evening. As the relentless storm rages on outside, it seems to mirror the tempest within Beatrice Leong.
The mere mention of "autism" ignites a fiery response in her. Autism is a topic Leong approaches with profound seriousness. Being autistic herself, she embraces her identity with pride, treating it as a badge of honour.
With a flash of her dimpled smile, she declares firmly: "I'm not differently abled, I'm disabled." There it is, a striking proclamation. It's as though she's just flung open a door, inviting me into her world, offering a deeper understanding of her experience.
Her straightforwardness is both striking and disarming, eschewing any sugar-coated language that might undermine the authenticity of her experiences and existence.
She continues thoughtfully: "In truth, my disability is more a product of the environment and societal structures. So yes, I'm disabled." She highlights that when an autistic individual faces job rejection, it's not due to a lack of intelligence or social skills.
"We're just wired differently. We communicate differently," she explains. Then, posing a rhetorical question, she asks: "If sign language can be provided for a deaf person, why are you not accommodating an autistic person?"
I have no answer for that.
She falls silent, momentarily engrossed in her thoughts as she idly picks at her food. After a pause, she resumes: "When you call someone 'disabled', it means everyone should help make things better for them. But saying that they're 'differently abled' means everyone can ignore their problems. It's like telling them everything is okay and they're already accepted as they are."
Using the phrase 'differently abled', she argues, implies that accommodating disability isn't society's responsibility. Changing language to take another's experience into account is a step towards actually improving it.
Meeting my gaze, she elaborates: "Real acceptance is more than just letting someone be there. It means actually listening to them, empowering them to join the conversation on their own terms and not just making small, meaningless gestures of including them. Understanding this difference is important."
It's a cause that Leong feels strongly about. "I've so much to say about this," she confesses, half apologetically.
As an autistic woman diagnosed later in life, Leong brings a distinct and personal perspective, especially understanding the intricate hurdles girls and women face in seeking diagnosis and support.
Such a late diagnosis might seem unusual, but it isn't actually that rare — especially for women. For a long time, it was dangerously assumed that girls couldn't even be autistic. Research now shows that autism in women is diagnosed later and much less often than men. "That doesn't mean fewer of us are autistic. It just means we're overlooked," she says dryly.
Her journey inspired her to establish AIDA (Autism Inclusiveness Direct Action Group), an autistic-led advocacy organisation aiming to promote inclusivity and ensure that the autistic community is involved in the making of policies that affect their lives.
"There's a lot to tell you," she says, before confessing: "For my entire life, I've found it very difficult just to exist." As an adult, the sights, sounds and smells of everyday existence still overwhelm her.
Radiating an air of delightful nonconformity with her septum ring and inked arms, Leong punctuates each sentence with a smile, unfazed by the gravity of the topic at hand. There are hard memories to dredge up, but the slight smile almost never leaves her face as she recalls her early struggles.
GROWING UP
During her school years, she was known for being troublesome, particular, and often, misbehaved. Regularly, she would defy her teachers and push against the school's rules. Driven by boredom and a disinterest in studying, she habitually slipped out to hide in a cement tunnel at a playground near her school.
Leong frequently sought solitude in the school toilets as well, a habit she carries with her to this day. Back then, her behaviour didn't raise alarms primarily because of her strong academic performance. "I was simply labelled as difficult," she reflects quietly.
She recalls being an avid listener to Hitz.fm's famous radio show featuring Lil Kev and Fly Guy. "I'd listen and write down everything they say in my little notebook," she recounts, explaining that this practice was more than just a hobby; it was her bridge to understanding social cues, a skill she had to consciously learn. This approach is often called "masking" or "camouflaging".
She acknowledges the difficulties she faced during her teenage years. Forming friendships with other girls was a challenge as she often didn't grasp social cues that seemed obvious to others.
To fit in, she felt compelled to feign understanding, constantly trying to decipher the appropriate response in every interaction. This led to overwhelming anxiety about presenting the right facial expressions to match her words.
Her social unease only compounded these struggles. "Girls didn't like me. I didn't shave my armpits... I wasn't aware that it was a 'thing'. I knew little about puberty and menstruation, receiving little guidance from my mother. That's when I learnt shame," she shares quietly.
"With shame comes poor choices in friendships and relationships. And for many years, I also struggled with an eating disorder. It was incredibly stressful," she adds.
Continues Leong wistfully: "Growing up, I wanted to be a lawyer." But staying in college proved to be a challenge. "I was smart enough to earn scholarships, but I moved from college to college whenever I faced a setback."
Eventually, she made her way to Australia to pursue fashion and design. "It was a challenging time," she acknowledges openly. "Managing finances and living independently were overwhelming tasks for me. I also still had problems navigating friendships and relationships."
Yet, in the face of these difficulties, her resilience shone through. Against all odds, she returned home with a degree in hand. It was during her time in Australia that the 20-year-old Leong was first diagnosed as having anxiety and depression, and treated with anti-depressants.
DARK DAYS
Upon her return, she found she couldn't hold on to a job. "I didn't understand people, social cues and I lied to cover up my mistakes," she explains frankly. Thankfully, Leong soon found a turning point in her career with a reality TV show production.
Her career further evolved as she moved into freelancing, especially after working with a documentary producer, where she discovered her passion for storytelling through film. This revelation solidified her path in filmmaking, a field she found accommodating to her unique challenges and perspectives.
Despite her professional achievements, Leong struggled in her relationships and friendships, which added to her mental stress. "The next encounter I had with a psychiatrist happened under extreme circumstances. I was in an emergency ward, following a huge emotional meltdown that marked a low point in my life," she recounts.
She vividly describes her experience in the hospital's emergency care as overwhelming. "Imagine being in a place with glaringly bright lights, the constant noise from busy nurses and a frigidly cold environment. It's enough to be distressing for anyone, especially those with sensory issues," she explains, shuddering.
"Do you hear sounds?" the medical officer asked,
"Yes, I do," she replied.
"Do you think you're safe?"
"No, I'm scared."
Leong's already delicate situation was exacerbated by the presence of a man, whom she was having a tumultuous relationship, sitting beside her in the consultation room. She believes this had added to the confusion, leading the medical officer to misinterpret her words, assuming the auditory experiences she described were perceived as threatening.
"Misunderstandings like this happen a lot to us on the autism spectrum. We take things literally and sometimes miss the hidden meanings in questions, which leads to people getting the wrong idea about us. Figuring out what to share is hard and often leaves us feeling more alone and isolated," she explains.
She was diagnosed as schizophrenic and given anti-psychotic medication. The pills obviously didn't work and put her already fragile state under tremendous stress. Not long after — after a series of angry outbursts and meltdowns — she was committed to the psychiatric ward by her desperate family.
Her smile slips for the first time and she grows quiet again.
"When I showed no improvement under medication, I was put through multiple sessions of electroconvulsive therapy (ECT) treatments in an effort to 'stabilise' me," she shares, breaking the silence.
She was aware of what was happening to her, and remembers saying verbally saying: "No! I don't want this!" But they'd sedate her anyway and carry on with the therapy. "Till today, those sessions have left me with memory gaps," she reveals.
Throughout the admission, she learnt very quickly how little autonomy she had over her treatment plan. "I was restrained to my bed when I resisted instructions. It didn't take long for them to strip me of my dignity," she says softly. She quickly learnt to feign compliance so she could be discharged quickly.
The doctors then changed her diagnosis from schizophrenia to bipolar disorder. "From thereon, I had a string of other diagnoses with many different professionals!" she shares, shaking her head.
Her autism diagnosis (and the final one) was birthed from an interaction with a family and their child on the autism spectrum, which sparked a moment of self-realisation.
"I instinctively knew the child was on the verge of a meltdown, so I helped make room for the family to manage the situation. That's when it hit me — maybe I'm autistic too," she reflects.
Delving deeper into her research on autism and exploring the experiences of other young women on the spectrum, Leong began to see a reflection of herself. She recognised that her own behaviours, the meltdowns she experienced, and her challenges in managing relationships and friendships, were all indicative of autism. This realisation brought a new understanding to her experiences and struggles.
After finally being diagnosed with autism at the age of 35, she was understandably euphoric. "I was the same person I was the day before, the same person I'd always been, but with the terminology to explain myself and to find a community," she says.
HOPE AND PURPOSE
The diagnosis gave Leong certainty, solidity and the strength to articulate her needs to others. "I looked back on the past anew, seeing my own behaviour through softer lens and pinpointing where others could have been kinder. I wished only that I hadn't lost so much of my life hating myself," admits the 40-year-old.
The correct diagnosis wasn't a magic wand that immediately changed everything. "It's still a struggle and I still have meltdowns. But I've learnt to understand and accept what it is and why it happens," she admits. "More importantly, I'm not the 'monster' I was told I was."
Leong has since emerged as a prominent autism advocate, openly discussing her personal challenges and highlighting the issues faced by adult women with autism in Malaysia, particularly those who receive a diagnosis later in life. She recently finished filming a commercial for RHB, showcasing her life story, set to be released during the Chinese New Year celebrations.
"It's important to me because I believe in the power of media where stories about us, should and rightfully be told by our own voice and perspective. Far too often we hear about autism as how others would describe us, instead of how we describe our own lived experiences," she tells me.
In addition to her advocacy work, she has ventured into entrepreneurship, establishing a health technology start-up called Gather.
This platform is designed to aid users, including those on the autism spectrum, in managing their healthcare needs and organising their medical records.
A key initiative of Gather is Project Lily, an online service aimed at improving accessibility to autism assessments and support. This project also provides early intervention programmes for families with young children.
"Project Lily was named after a teacher who had a profound impact on my life. She was kind to me, introduced me to music and took me to concerts," Leong shares, smiling.
In her own words, she never set out to become an activist and often felt uneasy with the label. "It seemed to happen by chance," she explained, "starting from when I first openly discussed mental health and gender issues."
Her journey of self-discovery, particularly understanding her autism, has led her to see disability from a completely different angle, as she is part of that community. This has involved a significant process of unlearning and re-evaluating her own and society's perceptions of disability and self-identity.
Leong acknowledges the isolation that comes with this path: "It's a lonely road. Beyond the accolades and media attention, there's a reality filled with tears and the struggle to be heard."
She speaks softly about the personal toll of her activism: "Recounting my life experiences is traumatic. Each time I try to enlighten others, I relive painful chapters of my past. Changing societal attitudes is immensely challenging … like a salmon swimming upstream."
Her commitment to activism stems from a lifetime of feeling unheard and misunderstood, making choices based on fear and a lack of self-awareness. "I continue to fight so that the girls who follow will have it easier and an additional role model," she says.
Now, she practices more self-compassion. "Growing up, I was as critical of myself as others were of me. I absorbed the worst criticisms as truths. Now, looking back, I wish I could tell my younger self about her autism, not just as an okay thing, but as something positive."
It's time to part ways as the rain outside subsides. We exchange goodbyes. As Leong walks away, her fiery determination is unmistakable. She continues to confront and challenge the misconceptions and mysteries surrounding autism, much like a persistent storm raging within her.
Her story speaks of a lost youth and struggles that made her lose her way for a while. But there's light at the end of the tunnel and she's slowly walking through it, bringing with her countless of women and young girls in a similar predicament who need to see the light.