Adults on the Spectrum and Raising Funds

We’ve come to the end of a special month, April. This month is when the autism community worldwide celebrates autism awareness and acceptance. I’ve had a busy April. One of the most memorable April days was being invited to the Enabling Village in Singapore to do a storytelling session with Open: A Boy’s Wayang Adventure. I talked about the importance of understanding feelings and how challenging it is for autistics to tell others how they feel. I used the same emoti-cards that Open’s father uses to show Open different types of feelings and the nuances of emotions. I had a wonderful time and met many inspiring individuals.

As May begins, I’m preparing for two events: an art auction/book party on the 19th at Art Porters, a gallery close to my heart, and a storytelling session on the 27th at a restaurant space housed in one of my favourite museums. I’m doing this in a bid to raise awareness of adults on the spectrum and to fundraise for service providers who cater to such adults. Why adults in particular?

As is often the case, children get the most attention. Couples adopting often focus on babies and toddlers which is understandable, as babies and toddlers are cute and adorable, tugging at our maternal or paternal heartstrings to protect and love. Older orphans are often left out, as one can imagine, and many will leave the orphanage never having had the opportunity to experience family life.

The same situation occurs with people on the spectrum where authorities focus on providing services–educational and therapeutic–to children on the spectrum, often with little funding left for provisions for adults on the spectrum.

After many conversations with people parenting individuals on the spectrum and those providing services for such individuals, I’ve come to realise that many service providers for adults on the spectrum are running on empty.

In an ageing society like Singapore’s, many parents with only children on the spectrum are worried about how their children will carry on when they pass. Assisted housing for autistic adults is still not available as a state resource, although day centres where adults on the spectrum can attend are to be found. These centres provide services like personal health education, vocational training, social interaction and recreational skills training to help adults on the spectrum cope with daily life and to offer respite to their caregivers. However, these are not residential homes where such adults live. Day centres or daycare centres as they’re known in Singapore operate 5 days a week and are closed on all major public holidays and what’s more such centres are heavily underfunded by the state. Many run at a loss and are supported by income from other areas, like education and daycare centres for children on the spectrum which come under the same business umbrella.

Daycare centres are important, especially for adults who are moderate to severely autistic. Such centres provide a safe space for individuals 18 and over who are above the age to access other forms of educational services provided by the state. Many of these adults are too intellectually challenged and cannot access other forms of vocational education which will help them gain some form of gainly employment in the future because many cannot function on their own and cannot live on their own without a carer or helper. But at the daycare, they learn to be with other adults like them, are cared for by allistic adults they trust where they can learn some important life skills.

Daycare services are important too because they provide respite to parents and carers. As parents, we all know how important some me-time is. Parents with autistic children are known to suffer from depression, exhaustion and anxiety caused by caring and loving a child on the spectrum. It is all the more important that they are supported.

There are some plans to build assisted housing for adults on the spectrum. But these will not be available in the near future. Autism awareness is still in its infancy in Singapore and the region of Southeast Asia and many organisations in Singapore are still raising awareness of ASD from the bottom-up. To be fair, Singapore is doing its best as the authorities have announced that all special needs individuals will be guaranteed a place in school (mainstream) soon. Right now, children on the spectrum are placed in ‘special’ schools where staff are trained in-house at the service providers they work at and by consultants from overseas.

Even as more and more individuals have been diagnosed with ASD, there are still many who are not that may be on the spectrum. Such adults are known to social workers seeing to their welfare as many are living on or below the poverty line and have challenges integrating socially. However, autism as a concept is still not understood by many such families. Then, there is the habit and cultural thinking behind housing: in Singapore, many (allistic) adults live with their parents even when they can afford to buy homes of their own, moving out only when they are married. Additionally, as housing is very expensive here, there are many working adults priced out of the housing market and are forced to live at home with their parents. Due to many cultural habits and thinking, very little thought has gone into how adults on the spectrum will live and with whom after their parents pass on. It is assumed that a kind relative will take these adults on and many do but what happens when these adults are only children?

It is not all dire, of course. The country is young and with nation-building being its focus since 1965, energy and resources have gone into focusing on able-bodied persons. As the nation matures and the people are waking up to a sector of their society that is diverse and requires special attention, facilities and mindsets are changing to ensure inclusivity and acceptance.

I’m doing my bit to raise awareness of this situation through the book and through collaborations with other like-minded individuals. I’m hoping to raise a sustainable amount of financial assistance for two adults who need daycare services so that their ageing parents do not have to worry about fees for some time. Why two? I like things in pairs and I’m taking small steps to make a difference.

A story that ends with a sense of hope is always a story that people remember. There is hope yet for this young nation of Singapore. As the economic race, the focus on ableness and nation-building give way to financial contentment, inclusion and security in the nation, more and more acceptance of individuals with autism will follow. I live in hope.

 

A is for APHID

I know aphids to be these green little insects that fly around garden plants, attach themselves on the stalks and branches, and then suck the sap out of them. In our London house, we have a garden and that’s where I came across these plant lice. They are common garden pests with around 4,000 species found around the world.

Here’s what I read on the internet regarding aphids:

“Aphids are small (1/8 inch long), soft bodied, pear-shaped insects that may be green, yellow, brown, red or black in color depending on species and food source. Generally adults are wingless, but some can grow wings, especially if populations are high. They have two whip-like antennae at the tip of the head and a pair of tube-like structures, called cornicles, projecting backward out of their hind end.” (Source)

I hate aphids for they can destroy your plants by sucking the sap out of them; the English word ‘sapping’ derives from the connection we have made with sap being the life force of plants and that once drained, that life force is diminished. My experience in dealing with aphids have made me detest them. But I love how in the English language, acronyms spell out certain words, some are meaningful words while others can be read easily. For the latter, I can think of UNESCO – United Nations Educational, Scientific and Cultural Organisation. For the former, I can think of Scuba – Self-contained Underwater Breathing Apparatus. Actually, I only just discovered Scuba is an acronym.  I’m a scuba-diver, but I’ve used the word so often without realising that it’s an acronym that has become a noun and a verb. It’s amazing, there are so many things we take for granted in life. But I’m glad to be learning everyday.

Did you know that an aphid is also someone who is in high denial? Well, I didn’t, until I did the research. An APHID in autism glossary means A Parent Highly In Denial. Don’t you just love acronyms?

Denial is quite common amongst parents when their child/ren has/have been diagnosed autistic. It’s a wave of shock hitting you hard. On the one hand, this is totally understandable, on the other it can be detrimental for the child/ren in terms of bonding and acceptance. Ultimately, denial will sap the child/ren from being the great person that they can be, no matter where on the spectrum they’re on.

In Open – A Boy’s Wayang Adventure, one parent is APHID.

“Oh Ben,” Mama sighs. “I don’t know, Sky. He’s not getting better and I don’t know what to say to him.” (Open: pp. 30-31)

Often, APHID comes to terms with their child/ren’s diagnosis but still thinks that there is a cure out there. It is very important to note that autism has no cure. There is no medication that can make an autistic person better. Associating autism with a cure projects the myth that autism is a disease. Autism is a neurological condition and autistics are as they are. As James Sinclair of Autistic and Unapologetic explains:

“Is there a cure for autism?

Possibly the most frustrating/annoying/upsetting part of having autism is the rate at which this question appears around the internet. Though this is something which I plan to discuss with passion later on, right now I am simply going to say ‘no’.” (source)

APHID mourns the loss their child upon diagnosis. In the stages of grieving, denial is the first stage that people usually go through in mourning. But there is grace in denial because this is the beginning towards acceptance. (source)

As Jim Sinclair (not to be confused with James Sinclair), an autism rights activist who started the Autism Network International, said in his essay, ‘Don’t Mourn for Us’:

“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real.”—Jim Sinclair, “Don’t Mourn for Us,” Our Voice, Vol. 1, No. 3, 1993.

I hope that reading this post will have clarified certain things for you. Let’s celebrate autism rather than denigrate it. Let’s love our children for who they really are. Let’s work towards more #acceptance and #tolerance in our communities and societies. To end this story, I’d like to share another on how a particular APHID connected with her autistic son through her own self-discovery.

A Little Announcement. 

It’s 18 days to the book launch; I’m counting down to March 10. I’m looking forward to seeing friends and readers there. Come take part in the dialogue between Raymond Tan of Brainchild Pictures and me on representation, inclusivity and the importance of preserving our cultural heritage. [yes!! the book is an adaptation of The Wayang Kids.]

Purchase your copy of the book and take a photo with it and [hashtag] #OpenEveryChildMatter. Thanks for reading, always!

 

 

Image: Public domain. The life stages of the green apple aphid (Aphis pomi). Drawing by Robert Evans Snodgrass, 1930.

 

A is for Alexithymia

Alexithymia

\ā-lĕkhs-ĕ-thī-mē-ŭ\

Alexithymia is a Greek word with two parts: lexis meaning ‘word’ and thumos meaning ‘soul/heart/mind’. Put together, alexithymia is the clinical term used to describe the inability to recognise emotions and their nuances. People diagnosed with alexithymia have a limited understanding of the own self-experience and also that of others.

Emotions are intricate, textured and nuanced. There is a range of emotions which some individuals find difficult to articulate. For example, ‘hunger’, ‘tiredness’, ‘boredom’, ‘anxiety’ and ‘frustration’ may all be understood to look and feel like ‘anger’.

Alexithymia is one of the many presenting symptoms of autism. People suffering from depression also present alexithymia, and so do schizophrenics.

When was alexithymia discovered? 

The term was first mentioned in 1972 as a psychological construct, and was viewed as a deficit in emotional awareness. [Scientific America; 2014] Researchers found that approximately 8% of males and 2% of females have alexithymia which presents itself in “mild, moderate and severe intensities”. [ibid]

Researchers also found that alexithymia has two dimensions: cognitive and affective.

The cognitive dimension (thinking dimension) indicates the difficulty in some individuals in identifying, interpreting and verbalising their feelings. The affective dimension (experiencing dimension), on the other hand, indicates the difficulty in some individuals in expressing, imagining and reacting to either their own or other people’s emotions.

How do we help individuals with alexithymia?

The best way to help such individuals is to love them… patiently. Of course love is the encompassing umbrella to any offers of assistance. But love manifests in different ways as do all emotions: Love can scold, beat, shame and mock. These are the negative manifestations of love and do not help individuals with alexithymia.

Living with alexithymia already compounds the difficulties of daily life for individuals on the spectrum. Consider expanding your emotional vocabulary to help the person with alexithymia. “I’m feeling frustrated because I can’t get the computer to work. What about you?” or “I’m tired, let’s get a takeaway.” Ask “You seem angry. Is something bothering you?” to help the person you love categorise or label how they are feeling. “You look anxious. Is it because of the exams coming up?” will help someone focus on why they feel a certain way at a certain time. Likewise, “You seem happy, was the ice-cream yummy?” is another way to give positive feelings associated with a stimulus a name.

Talking about your own emotions can sometimes help encourage those with alexithymia to express theirs. “Can I tell you how I feel about the situation?” – when framed this way, the speaker is also asking permission to talk about how they feel. Take your cue from the person you’re asking. Don’t forget that autistics are often overwhelmed by their own emotions which they find hard to express. Some individuals on the spectrum may be encouraged to express themselves if you give them the space and time to, others may clam up further. No matter what, be patient – always. 

Treating Alexithymia

Thankfully, alexithymia can be treated. There are many ways to help yourself and those who you love. I’ll just list three.

A good way is to encourage your loved one to keep a journal. When I was in middle school, and often frustrated, and had difficulty in expressing myself beyond always being angry, a teacher taught me how to express my feelings by journaling them. She gave me a thesaurus to help me find other words to ‘anger’ which includes ‘anxious’, ‘frustration’ and ‘fearful. In this way, I increased my range of words to use which helped me in expressing myself better. In another, I learnt to ask myself why I was feeling the way I was; I learnt to navigate my emotions. This led to self-awareness and self-experience.

Another way is to read books. Authors are compelled to find other words to describe emotions and feelings in their novels. Affiliating with a character in a book can often help us deal with our own experiences and emotions. Research has shown that reading can help us better understand ‘Theory of Mind’ [discussion to come in another post], engage in expressive language and develop linguistic skills to describe a story and personal narratives.

Immersing oneself in the expressive arts is another great way to cope with alexithymia. Acting, dancing and music are all different forms of the expressive arts which can help us express ourselves beyond words. Sign up for these courses in your communities. It’s also a great way to meet people.

Remember that emotions are abstract constructs and can be very difficult to describe in their layered nuances and textures. But ‘anger’, ‘happiness’, ‘desperation’, and ‘love’ are all universal emotions that everyone feels.

The Scream by Edward Munch, 1893. Image courtesy of Edward Munch Organisation 

 

The Birth of A New Generation

D-day.

It’s the day every pregnant woman anticipates with anxiety, bated breath and excitement – the birth of her baby.

Look, folks, here is mine – Open: A Boy’s Wayang Adventure.

It’s hard to explain this emotion I’m feeling right now. Having a book published is not the same as birthing a baby, I know. I know because I’ve had two of my own. Trust me, giving birth without the influence of drugs is not something I’d recommend to anyone. I did it. Twice. Survived to tell the tale. But… Aw… I’d do it again because I survived to tell the tale and I can tell you that it’s fine. The best feeling in the world is the feeling you get when baby is placed on your stomach right after and then in your arms when swaddled. It’s beyond exhilarating. Indescribable.

Book.

What’s that gotta do with a baby, you ask. Well, a very famous writer once said that writing is easy, you just sit at the typewriter and bleed. [A free book to anyone who can tell me who this writer is (only one book to give away), so be quick.] Of course it’s not as bad as it sounds although this writer did mean by bleed, the sheer handwork behind and energy involved in the creation and birthing of a book. His books are his babies too.

And bleed I have but with enormous triumph and pride. Here’s my  baby, readers of the world. Please listen to the story he has to tell because all children love to be listened to, not just heard.

Buy your copy here.

 

Let’s Talk About Open

In my book, Open: A Boy’s Wayang Adventure, the protagonist is named Benjamin. He has ASD – Autism Spectrum Disorder. He is also a non-verbal autistic. It is good to note that some autistic individuals may speak without stopping while many are non-verbal or partially verbal.

This movie still is courtesy of Brainchild Picture, the studio that produced The Wayang Kids, a movie about a bunch of primary school kids who must perform in a Chinese opera performance. Leading the team is a mildly autistic boy who doesn’t speak. He has to convince his friends and ultimately himself that he is good enough to play the role of Monkey King.

The book is an adaptation of the movie where Open has a voice.

It has been a very interesting and fulfilling writing journey for me working with Raymond Tan of Brainchild in producing this book. The collaboration has been one of friendship, camaraderie, the meeting of creative minds and most of all, growth.

As writers, we all know that putting ourselves into the shoes of the characters we write about can be a challenging endeavour. How can we represent these characters who are individuals in themselves, yet be that writer who forgoes ego remaining authentic to the character?

Raymond and I will be discussing this during the official book launch of Open. Come see us and join in the conversation about how Singapore literature can foster an environment of inclusivity in our communities and societies.

BOOK LAUNCH — OPEN: A BOY’S WAYANG ADVENTURE

is taking place 10 March 2–3 pm at the Living Room, The Arts House, under the banner of the BuySinglit Campaign which runs from 9 – 11 March, 2018. 

The launch programme will look at how Singapore literature can play a part in encouraging inclusivity. Singapore based British author Eva Wong Nava and film director Raymond Tan—the creative minds behind Open: A Boy’s Wayang Adventure—will be holding a dialogue about representation, acceptance, and preserving our cultural histories.

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