Cover Story: Labor of Love

2-656-376.jpg

Ira Dan Kaye Community Service Award winner Noel Lam shines a light on Hong Kong’s autistic community


If you’ve lived in Hong Kong for some time, or indeed any big city, kindness of strangers seems a foreign concept.

So imagine my surprise when mid-sentence, just 30 minutes into our conversation inside a chilly air-con blasted urban cafe, Noel Lam takes off the shawl she had been wearing and gets up to drape it around my shoulders, observing that “you need it more than I do.”

She was right, and I was grateful. But I don’t know why I was surprised. Noel Lam gave up her high-flying job with a listed Swiss reinsurance company in 2017 to work full-time at LoveXpress, a local charity dedicated to serving Hong Kong’s misunderstood autistic community.

In 2015 Lam met Kitty Poon, who founded LoveXpress after a mid-life revelation that “life shouldn’t just be comfortable, earning money, but a personal calling to find out what love is.” By that point Lam had done some part-time volunteer work and long-suspected that serving others was something she could spend the rest of her life doing.

Lam grew up in a broken home in the slums of Hong Kong where she had to start working at just five years old to help her mother support their family, including her drug addict father and other siblings.

Robbed of a normal childhood and forced to grow up before she was ready, Lam had every reason to let her past get the better of her, but that’s not how she sees it.

“There was a reason for my experiences in life, which was to prepare me for the future, for this role. I am resilient and able to see things with a different pair of eyes, to have more sympathy and empathy for others,” she says.

“Everyone I meet has a streak in them that inspires me,” she says.

Alongside Poon and the rest of LoveXpress’ core team, Lam works to raise awareness about autism spectrum disorder (ASD) and hopes the organization can be a source of information and support for families of children with autism.

A hidden disability

“To be honest, we didn’t choose, they chose us,” says Poon, after I ask why the focus on autism over other disorders.

Forty-nine children in every 10,000 are diagnosed with the disorder in Hong Kong, according to a 2007 study by Hong Kong University.

Lam says autism has “a rippling effect,” affecting not only sufferers but with implications for education, employment and society as a whole.

The biggest misconception about autism is that it is a behavioral or personality issue, so sufferers don’t receive the right attention, says Lam.

“Individuals with autism look completely normal – they can be attractive and very smart. It’s like they are wearing a mask, and they cannot communicate what’s really going on.”

Lam has met with parents who blame themselves for their child’s autism, mistakenly believing that ASD somehow is preventable. What people need to know is that autism is caused by developmental differences in the brain. It is not a behavioral issue and has nothing to do with upbringing, she says.

This misunderstanding delays possible intervention, especially during the “golden period” up to the age of six. An autistic brain develops in such a way that it cannot read and interpret certain social signals, so some communicative behaviors aren’t learned and connections aren’t made.

“Earlier intervention will drastically change their lives,” says Lam, who urges parents who suspect their child has autistic features to take an assessment so they can “move from the self-blaming stage to the problem solving stage.”

LoveXpress partnered with different professional, education and social institutions to develop a holistic one-year program called “Early Intervention for Families of Children with Autism,” to help low-income families during this period.

The program, which includes professional therapies, emotional counselling, parents’ training, social networking and home visits helps parents accept and positively face the realities of living with autism, and methodically helps them plan the growth and development of their children within that golden treatment period, i.e. early childhood.

Poon and Lam advise keeping a close eye on boys, in whom early signs of autism are often missed, put down to the fact that boys generally mature more slowly than girls, physically, socially and linguistically. Autism is also much more common among boys (approximately 1 in 42) than girls (approximately 1 in 189), according to research by the U.S. Centers for Disease Control and Prevention.

Autism identification and assessment in the public healthcare sector can involve long wait lists of nine months to a year. After receiving diagnosis, the wait for treatment can take between six and 18 months.

Given that the cost of lifelong care due to autism-related issues can be reduced by 67 percent when there are early interventions according to the Autism Society in 2016, the wait seems worth it.

Right to education

In Hong Kong, ASD is afflicted with the same stigma as mental health issues, though the two are completely unrelated. Lam explains there is a reluctance within Asian culture to highlight what is “bad,” with Poon chiming in that autism is viewed by some as a curse on the next generation which they refuse to accept by acknowledging it exists.

Without community awareness and acceptance, autistic children will face various difficulties when older as they make the transition into the education system and then the workplace.

There are a number of privately run special educational needs (SEN) schools in Hong Kong targeting the English-speaking autistic community, but these tend to be expensive and beyond the budget for many local families.

Within the government education sector, autistic children with an IQ below 70 points are sent to special schools, while the rest are placed in mainstream schools that also cater for SEN students. Both public and international schools receive some funding from the government to support SEN, but Lam is skeptical that their hearts are in the right place.

“The mindset of the whole education industry is to believe that as long as they market themselves as taking some SEN students that funding will flood in.”

The situation is looking up though. In her October 2018 policy address, Chief Executive Carrie Lam pledged HK$800 million more each year towards SEN support initiatives, including the employment of properly trained SEN teachers, called Special Educational Needs Coordinators, or Sencos.

“At the moment if there is just one SEN child in a class alongside regular children they can be ignored easily. They typically hide in a quiet corner, and the teachers are happy with this situation as long as they are not being disruptive,” says Lam.

Untapped potential

Only 16 percent of autistic adults in the UK are in full-time paid employment, and only 32 percent are in some kind of paid work, according to research by the National Autistic Society in 2016.

Few people realize that autistic people have, in fact, a lot to offer the workplace. “In terms of soft skills they are loyal, precise and punctual, are great at following procedures and steps, and they enjoy repetitive work,” says Lam.

Thanks to their unique brain structures and ways they view the world, adults with autism commonly thrive in artistic and creative industries.

At this point Poon pulls out her phone to show me a photograph of a realistic painting by a boy with autism they’ve worked with, done mostly from perceptual memory. This young boy, who was successfully diagnosed with ASD by the age of six, is a great example of the potential that people with autism can unlock with early intervention and family support.

Autistic people with an IQ over 70 points are regarded as having high-functioning autism (HFA). These individuals tend to succeed in STEM industries thanks to their organization skills, high meticulousness and responsiveness to visual learning.

Indeed certain companies in the US have inclusive hiring policies that include HFA individuals. Microsoft, with its Autism Hiring Program, is one of them.

LoveXpress runs a career-planning program that includes activities like company visits, mock interviews and job matching to develop in young people with autism the confidence they need for a transition to the workplace.

Knowledge is power

Through a series of special awareness raising events, including the “Love Stone” roving exhibition, “Love Stone” painting workshops, school talks and more, LoveXpress gives the public an opportunity to learn about and interact with members of Hong Kong’s autistic community.

Poon uses her passion for making jelly art to teach autistic children a new skill. Making the jellies, then selling them to raise funds, gives them feelings of achievement and recognition. Parents are always impressed by what their children have done, she says.

Given Hong Kong’s conservative nature, I couldn’t help but wonder whether Lam and Poon had come across any parents who prefered to keep their autistic children out of the limelight. But Lam says public response to the charity’s work has been nothing but positive.

She tells the following story: One day a father walked past one of the group’s exhibition booths with his six-year-old son who had been recently expelled from school. At that point neither of the boy’s parents knew much about ASD, let alone that their son had it. They had always debated whether his behavioral issues were caused by one of his grandmothers, with whom he spent a lot of time. This misunderstanding wreaked havoc on the man’s marriage, and the boy’s grandmother felt blamed to the point of wanting to kill herself.

Suspecting an undiagnosed case of autism, the LoveXpress team connected the father with another family with an autistic son. Bonding over games of ping pong, the father of the autistic boy shared his own experiences and advice with the struggling man, who felt encouraged to get his own son tested for autism. True enough, the young boy tested positive. With the support of his family, he is now on the path to a fulfilling life.

Some time later, Poon said the boy’s grandfather got in touch with her to thank her, saying:  “Kitty, did you know you saved the whole family?”


AmCham’s Ira Dan Kaye Community Service Award recognizes individuals for exemplary services to the Hong Kong community on a voluntary basis. Recipients of the award receive a check for HK$30,000 for a charity of his/her choice and an engraved silver plate. The award was named after past AmCham chairman Ira Dan Kaye who passed away on June 6, 1999.

For more about the AmCham Charitable Foundation visit:

https://www.amcham.org.hk/list/charitable-foundation


Operation LoveXpress Charity Sale

LoveXpress presents exquisite handmade gifts created by autistic children and their parents for you and your loved ones this festive season. Order these special gifts online using the order form below:

https://goo.gl/forms/8yfwjSA0iqjd6YkJ3

Limited Product Delivery starts from December 5, 2018.

Charity Sale products:

1. Calendar by autistic artist Alvin Li

2. Handmade organic soap by autistic family

3. Loving Stone Gift Set

4. Special Design Red Pocket

* Tax-deductible receipt will not be issued for purchase of charity sale items.

For any queries or to make a donation to LoveXpress, please contact:

Tel: 2896 0323

Email: [email protected]