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Autism Interview 

Kenneth Lyen interviewed by Kathleen Fernandez

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A. MYTHS ABOUT AUTISM

Autism awareness campaigns have been largely successful – more people know what it is, how to recognise the signs, and diagnosticians are better equipped to identify and properly diagnose the condition. Still, there are strong held beliefs about autism that just isn’t true. What are some of the prevailing myths about autism that you’ve heard from the public?

 

1. Myth: People with autism don’t want to make friends.

Fact: In most cases this is untrue. While there are some children and adults who seem to struggle with social skills, appearing detached and unfriendly, most persons with autism do want to make friends and can love as deeply as any other person. The problem is that they have difficulty communicating their emotions and do not express their warmth and affection very well. They form close relationships with people who they are familiar with, such as relatives and caretakers. With time, they bond with their peers, teachers and therapists who they frequently interact with.

2. Myth: People with autism can’t feel or express any emotion—happy or sad.

Fact: It is not that autistic individuals cannot feel or express emotions, but that they do so in a different or less expressive way. They do show a degree of empathy, and can recognize happy or sad faces. But when it comes to more subtle emotions, such as anger, fear or irony, they may have a harder time. Autistic people may have a more muted, less expressive way of displaying their emotions. Some get angry very quickly, while others may misread a situation and respond inappropriately; for example when they see someone fall down, they may laugh because they are not aware that the person may be hurt.

3. Myth: People with autism are intellectually disabled.

Fact: Autistic individuals, like the rest of the general population, have a wide range of abilities. Many have difficulty with speech and language, and this may give the mistaken impression that they are intellectually challenged.  On the other hand, there are some who display outstanding prowess in mathematics, art, music, and other abilities.

4. Myth: Individuals with autism spectrum disorder cannot lead independent and successful lives.

Fact: This is not necessarily true. Those who are more severely affected with limited language skills may have difficulty navigating our rather complex modern-day society without help. Those on the milder end of the spectrum can learn skills that enable them to get jobs, enter mainstream education, and lead independent lives. Training and special education can be very beneficial for autistic individuals, and this is highly encouraged.

 

5. Myth: Autism can be cured.

Fact: The majority of autistic persons remain autistic all their life. They can make significant progress with early intervention, special education, and vocational training that has been specially tailored for the needs of each individual.

6.  Myth: Autism is caused by bad parenting. 

Fact: The theory that autism is caused by bad parenting, or mothers who lack emotional warmth (“refrigerator mothers”), has been disproven. When parents try to better understand their children, they can help them flourish.

7. Myth: Autism is caused by vaccines. 

Fact: There have been many large-scale epidemiological studies that have shown conclusively that there is no scientific evidence to support any causal link between vaccination and autism.

8. Myth: Autism is caused by food allergies. 

Fact: To date, there are some isolated anecdotal evidence that some children’s autistic manifestations seem to worsen with certain foods, such as gluten (wheat), casein (milk), eggs, tomatoes, eggplant, avocado, red peppers, etc. However, there have been no large-scale studies to confirm these data. For the time being, one needs to maintain a healthy skepticism linking autism with food allergies. Thus at this stage, one should not restrict the autistic child’s diet.

9. Myth: The prevalence of autism has been steadily increasing for the last few decades. 

Fact: The prevalence of autism in Singapore is 1 in 150, which is close to the worldwide statistics given by the World Health Organisation. More cases are being referred with a diagnosis of autism in the past 30 years. In the USA for the year 2000, the prevalence of autism was 1 in 150, but in 2017, the prevalence has more than doubled to 1 in 68. How much of this is a real increase in the number of new cases is controversial, and experts say “the bulk of the increase stems from a growing awareness of autism and changes to the condition’s diagnostic criteria”.

10. Myth: Most autistic individual have special gifts or savant abilities. 

Fact: The prevalence of special abilities or savant skills in autistic individuals ranges from 0.5% to 10%. Famous examples include Stephen Wiltshire who has a photographic memory and can draw a city like Singapore after flying over it just once. Temple Grandin is the professor of animal science and a famous author. Kim Peek who has read 12,000 books and remembers everything about them. Leslie Lemke can play the Tchaikovsky piano concerto just listening to it once only. It is postulated that if one has a disability in one area, then the body compensates by developing expertise in another area.

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B. CHALLENGES FACED BY FAMILIES WITH AUTISTIC INDIVIDUALS

What are the immediate challenges, from your point of view, that families face upon their child/family member being diagnosed with autism?

 

1. Challenge: Coming to terms with the diagnosis. 

Approach: A diagnosis of autism spectrum disorder can be a shock to the family, and it is natural for members to go through different phases of response. Initially one may deny the diagnosis, and later one might become rather angry, and even depressed, before one finally accepts the diagnosis. It is important to try to obtain more information, either through online sites, books, or talking to specialists about the diagnosis.

 

2. Challenge: Dealing with family reactions to the diagnosis. 

Approach: Different family members respond to the diagnosis of autism in different ways. It is good to talk to each member separately, including the spouse, siblings, grandparents, and other caregivers. The reason is that autism is a life-long condition that requires teamwork and long-term management. If possible, enlist the help of friends, neighbours and other members of the community.

 

3. Challenge: Concerns over what will the future hold for the autistic family member. 

Approach: Different stages of the autistic individual’s life will require different approaches. The young autistic child may need early intervention schooling that may include speech therapy, occupational therapy, and special education. Opportunities for socializing needs to be organized, so the child can mix with other children, be given opportunities to engage in art, music, sports, and outdoor activities. The long-term future may require drawing up a will, and setting aside some funds in the event that the individuals are unable to take care of themselves, especially after the parents have passed on.

 

4. Challenge: Being overwhelmed by too much information on the web.

Approach: The internet is a vast storehouse of information, but sadly, some of it is inaccurate. It is important to check the facts to verify whether they are reliable. Also discuss the data with other professionals to evaluate their accuracy and relevance.

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C. HELP FOR LOW-INCOME FAMILIES

People with Autism require specialised early intervention but these can be quite costly. What kind of help is available for low-income families who are raising children with autism?

 

Singapore is fortunate in that there is a centralized charitable organization called the Community Chest, which has set up several schools and organisations for special needs children including helping autism spectrum children and their families. The Singapore government also helps by providing 50% of the funding for these schools, plus training special education teachers in the Institute of Education. Scholarships are also given to train speech therapists, occupational therapists, and physiotherapists. There is a waiting list for children diagnosed to have autism spectrum disorder for early intervention and therapies, but this is getting significantly shorter.

 

Free online training programs (see below) are available on the internet. Parents and caregivers can learn how to handle and train their autistic child.

 

Online Course: http://www.autism-society.org/living-with-autism/how-the-autism-society-can-help/online-courses-and-tutorials/

http://www.wingsmelaka.org.my/

 https://www.autism.org.uk/

https://www.autism.org.sg/

Floortime DVD Autism Training: https://www.amazon.com/Floortime-DVD-Training-Basics-Communicating/dp/B0009XZITG

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D. WHERE TO SEEK HELP

Where can someone go to seek out a diagnosis/test if they think someone they know might have autism?

 

The diagnosis of autism spectrum disorder should be an experienced pediatrician, psychiatrist, or psychologist familiar with autism.

 

All other online resources are merely screening (not diagnostic) tools. Try:

 

0-2 years - http://asdetect.org/

 

18 months – Checklist for Autism in Toddlers (CHAT)

https://www.rch.org.au/genmed/clinical_resources/CHecklist_for_Autism_in_Toddlers_CHAT/

 

4-11 years – childhood Asperger syndrome test (CAST) 

https://www.autismresearchcentre.com/project_9_cast

 

 

Kenneth Lyen, founder of The Rainbow Centre, interviewed by Kathleen Fernandez on 26 January 2019

I thank Professor Kenneth Poon for his help in additional information.

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