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Why Autism

In a world where people with autism are marginalized, the least we can do is to know what autism truly is.

Autism is a lifelong developmental disorder that impairs one’s ability to make sense of the world and relate with others.

The word ‘autism’ is derived from ‘autos’, Greek for ‘self’; indeed, a person with autism is often referred to as someone who lives in a world of his or her own.

 

According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), autism is characterized by persistent deficits in social communication and interaction across multiple contexts, as well as restricted, repetitive patterns of behavior, interests, or activities.

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In other words, people with autism face challenges in

  • Communication

  • Social interaction

  • Repetitive or restrictive behaviours and/or interests

These may manifest as a number of characteristics, such as

  • difficulty in speaking, in understanding language and social cues,

  • social awkwardness,

  • difficulty managing change and transition,

  • an intense interest in a particular subject,

  • strict and disciplined adherence to rules

 

Hence, things that make one with autism different may also be seen as things that make one exceptional. Moreover, it is important to think of him or her as intelligent, even if these challenges in language or behaviours make it difficult to reveal his or her underlying strengths.

In Singapore, it is difficult to estimate the actual number of those affected by autism without any accurate studies conducted locally, but based on global prevalence, about 1 in a 100 (or about 50,000) of us are diagnosed with autism. Over a fifth of that are under 19 years of age, and over 200 new people are diagnosed with autism annually.

 

Autism does not selectively affect any one race, ethnicity or social background; indeed, families of all kinds all over the world are affected by autism, regardless of  family income, lifestyle and educational level.

 

No one fully knows what causes autism, but current research indicates that autism may be the result of several genetic and environmental factors that affects a child’s brain development before, during or after birth.

 

There is currently no known cure for autism; however, early diagnosis, structured intervention and training can demonstrate significant improvements in a child.

Autism is more prevalent than you think.

As every person manifests autism uniquely,

we now understand autism as a spectrum.

Importantly, people with autism are not all alike.

It is misleading to think that all people from Singapore are alike. Similarly, it can be dangerous to think that all people with autism are alike.

 

Two people with autism may have differing severities of autism as well as intellectual abilities. Even then, two people that may appear to have the ‘same degree’ of autism may differ in the way they interact with people, decipher facial expressions, or in their beliefs and repetitive habits.

 

Importantly, we need to approach autism individually and uniquely for each person, so that we can help them and their families in the best way possible.

The first step is to understand what autism truly is––and we’ve taken that step.

The second step is empathy.

Whilst many think that interacting with people with autism is extremely challenging and only for the very skilled, truthfully, the same principles of empathy and understanding that apply to conversations with regular people apply to conversations with people with autism.

 

Here are five principles one needs to know when speaking to people with autism.

 

1. Respect him or her as a person that happens to have autism, not an ‘autistic’.

Whilst ‘autism’ may be the first thing you know about the person, it doesn’t mean that autism defines them and who they are, just like how a singular adjective shouldn’t define who you are. They, just like you, have interests, beliefs, values, aspirations, desires, hatreds and passions.

 

2. Be aware of his or her sensory needs, and avoid triggers such as bright lights or loud noises.

Imagine wearing a hearing aid that amplifies the sounds around you, and then imagine yourself in a busy coffeeshop and talking to someone at the same time. You might feel challenged, and maybe a little irritated. People with autism experience this as well, but also with all other senses: visual, olfactory (smell), taste and touch. Something like a new shirt can feel painful, and a whistling kettle five meters away can sound like standing next to a jet engine. Instead, bring him or her to a quiet room, in decent and comfortable lighting, and allow him or her to stim whenever possible to let off the information overload.

 

3. Speak clearly, simply and literally.

People with autism feel unfamiliar with metaphors, puns and sarcasm, and prefer a more literal description. So avoid phrases such as “piece of cake” or “walking dictionary”. Also, people with autism have difficulty understanding instructions if they are given too long a sentence; instead, use short and simple vocabulary. Remember, if they appear as if they are not listening to you, it isn’t that they are stubborn, but that they may not understand what you were saying before.

 

4. Help him or her with social interactions.

People with autism may look like they are self-absorbed or unwilling to socialize with others, but it could also be that they feel unprepared to start a conversation or meeting new and unfamiliar faces. Help them respond to situations that demand empathy and understanding from another person’s point of view.

 

5. Be patient and work to view his or her autism as a different ability rather than as a disability.

Underneath the difficulties and challenges they face in communicating with people or interacting with a busy and often noisy world, may lie someone who is incredibly gifted, hardworking and intelligent. Sometimes, it’s all to easy to judge them by their cover. Stop thinking about “if only he didn’t have autism”, and start appreciating the person for who they truly are. Don’t set expectations low just because he or she is autistic; set them high like you would anybody else, and give them the patience and time to reach these expectations.

Reach out to friends with autism, maybe even befriend someone in your school who others have chided or ignored. Now that you have a better picture of what autism truly is, you can truly understand the challenges they face everyday. Let this empathy be the foundation to build new friendships and strengthen old ones, and change their lives for the better.

 

Start volunteering at various autism centres or special needs schools. The best way to appreciate the diversity and spectrum of autism and the people with it is to interact with them first hand. Practise the skills you’ve learnt here and with time, you may even wish to become a regular volunteer.

 

Be an ambassador of truth and spread the message about autism amongst your friends. It is all too easy to generalize autism to a few unpleasant words if we’re not careful. But we believe that shedding light on falsehood is the only way to eradicate the stigma that people with autism face everyday. They may appear rude or violent, but truthfully, they may be experiencing a sensory overload, and instead of retaliation, the best thing someone can offer them is a sense of quiet comfort.

 

Start a local community involvement project involving autism, collaborating with special needs schools and/or autism centres and learn more about they do. Help fundraise, or participate in some of their many fundraiser campaigns. Pledge your next birthday or ang pao money towards supporting a special needs school and/or an autism centre. And the list goes on.

Now that you know what autism is, and how best to interact with people with autism, the third step is taking action. And it’s not just about donating money.

Project ANGEL@LKC’s mission is to make a difference to people with moderate to severe autism, in collaboration with St. Andrew’s Autism Centre.

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To do this, we’re focusing on spreading awareness, fundraising and educating medical students on autism.

Credits

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Hero image: Wheatfield Under Thunderclouds, 1890, Van Gogh Museum, Amsterdam, Netherlands

 

Prevalence of autism estimate retrieved from Autism Resource Centre (Singapore), accessed at www.autism.org.sg/living-with-autism/prevalence-of-autism-in-Singapore

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Content references and recommended readings

 

What is Autism?, published by the Autism Resource Centre (Singapore), accessible at http://www.autism.org.sg/living-with-autism/what-is-autism

 

About Autism: What You Need to Know, a guide published in 2013 by Autism Speaks, accessible at https://www.autismspeaks.org/sites/default/files/afyo_about_autism.pdf

 

Diagnostic and Statistical Manual of Mental Disorders (5th ed.), edited by the American Psychiatric Association in 2013, accessible at http://dsm.psychiatryonline.org/doi/book/10.1176/appi.books.9780890425596

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