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.

 

~ Open Travels to …

April is Autism Awareness Month. The celebration of autism awareness in the month of April is an extension of April 2, World Autism Awareness Day, an official day set aside by the United Nations to draw attention to ASD, focusing in raising awareness of this neurological condition.

This year’s focus for World Autism Awareness Day is in raising awareness of girls and women on the spectrum. #aspiegirls #girlsandwomenonthespectrum #autisticgirlsandwomen

“The 2018 World Autism Awareness Day observance at United Nations Headquarters New York will focus on the importance of empowering women and girls with autism and involving them and their representative organizations in policy and decision making to address these challenges.

Girls with disabilities are less likely to complete primary school and more likely to be marginalized or denied access to education. Women with disabilities have a lower rate of employment than men with disabilities and women without disabilities. Globally, women are more likely to experience physical, sexual, psychological and economic violence than men, and women and girls with disabilities experience gender-based violence at disproportionately higher rates and in unique forms owing to discrimination and stigma based on both gender and disability. As a result of inaccessibility and stereotyping, women and girls with disabilities are persistently confronted with barriers to sexual and reproductive health services and to information on comprehensive sex education, particularly women and girls with intellectual disabilities including autism.” [source]

I am all for focusing attention on girls and women on the spectrum. That’s because many autistic girls have fallen through the net in terms of diagnosis which means that they will miss out on early interventions that could be of great help to them. Research has shown that boys are genetically predisposed to be autistic than girls. There are many reasons for this which my post will not go into at length; there are many articles that can be found online, for those who are interested. I’ve linked a couple for reference in this post to help those who want to find out more. Researchers have found that girls are better at hiding their autism and in finding ways to cope with their perceived disability. In fact, girls without an intellectual disability (high functioning autistics) have been shown to mask their symptoms better compared to their male counterparts and are therefore invisible as autistics in plain sight. An aspie (Asperger Syndrome) woman I spoke to told me that she forces herself to make eye contact during conversations even when it causes her discomfort because she has been told that eye contact is important during dialogues: She has learnt to cope. Her diagnosis came late in life; for her, a diagnosis has brought relief and self-acceptance; it has brought an understanding of who she is and why.

To commemorate autism and autistics, the world is lit in blue for the day. Supporters and activists for Autism Awareness wear blue to encourage conversations about autism and in this, raising more awareness. Of course, raising awareness is not the same as raising acceptance. Many will know that awareness does not necessarily lead to acceptance. But it’s a start. Hopefully, the more awareness that is raised, the more acceptance there will be.

As a book author, conversations are important to me. Conversations are important too in helping young readers find the vocabulary to talk about social issues that are challenging and difficult. I talk about my book to many who ask what I do because I believe strongly in the book’s message: to raise awareness of ASD through literature. I’m aware that my protagonist is a boy on the spectrum and that his favourite colour is blue–all very cliched, I understand. The book as many know is an adaptation of The Wayang Kids, a film directed by Raymond Tan of Brainchild Pictures. Open or Benjamin Oh is Raymond’s character. Open represents that child in us who wants to be loved and accepted for who we are. I have taken Open out of the movie and given him a backstory and a voice in the book. The bridging of moving image and text is ever more important in this time and age because children are more likely to watch a film over reading a book. As a writer, I strongly encourage reading because books help us enter different worlds using our imaginations from words alone. Of course, movies do that too but in a different sort of way. The tagline for Raymond and my collaboration is “same-same but different” which is also the tagline used by Autism Network Singapore to facilitate a meta-reading and understanding of ASD.

The photo you see was taken in Sri Lanka by a friend and reader. She has kindly given me permission to share this because books travel and I’d like to share Open’s travels with the world. I’ve created a visual travelogue for Open because it’s a fun project and one that is easy to do. So far, Open has travelled to ~Japan, ~Germany, ~United Kingdom, ~United States of America, ~France, ~Sri Lanka, ~Italy and will be travelling to ~Croatia in the summer. This is all to raise awareness of autism through storytelling.

Where will Open travel to next? Be that next traveller to bring Open to your neck of the woods. Take a selfie or reference your destination (like this photo which was taken in front of Galle Library, Sri Lanka) and then use the hashtag, #OpenEveryChildMatters.

 

 

D is for Dedication

The writing process is often a lonely journey because the activity of writing demands that the writer gets into his/her own head and the heads of his/her characters. Although the process of getting into other people’s heads is a solitary one and the only company a writer gets to keep is that of the characters’, it is a journey that must be taken toute seule. However, the process of becoming published is often one that involves various parties, unless the author is self-publishing. Having said that, the process of self-publication does also involve various parties—the printer, for example, and the public who read the books or stories you’ve self-published.

This post is all about thanks. 

Open – A Boy’s Wayang Adventure could not have happened without various parties involved. I would’ve mentioned them on the dedication page if I were a more experienced author. Other books I’ve read have entire pages, even two, where the author lists the people who have contributed to the book, pre and post-publication. Now if I were a more experienced author, I’d have done that too.

I’ve thanked the four most important people in my life who I felt made this book happen. As readers will know, they are my husband and my wonderful daughters, and a dear friend whom I’ve learned so much from in terms of autism. I did not, however, thank the book publisher—Ethos Books—and my friend, Raymond Tan, of Brainchild Pictures, who was the first person who believed in my ability to tell a story through words. It was Raymond who asked me to write a book about his movie—The Wayang Kids—that led to Open – A Boy’s Wayang Adventure. However, the book wouldn’t have been published if Ethos Books hadn’t liked the story and felt that it was worth its weight to enter the world of published books. There is also the team at Popular Bookstore who asked for exclusivity for the book until April.

So, this post goes out to the team at Ethos, Popular Bookstore, Singapore and Raymond—Thank you, all!

To the Readers

This post also goes out to the readers of Open. They are Mark Anthony Rossi and his lovely children, Hilary Ryel author of Kids Like Us, James Sinclair of Autistic and Unapologetic, Hubert Hu, Elizabeth Lim, Jessie Tan, Mozhdeh, Hwee Goh, Wayne Tan, Emily Lim and the children she gifted the book to, Lianne Chen, Andera Liu, Liz Lim, Kum Suning, Ng Kah Gay, Ric Liu, Nikki (you know who you are) Trudi Batchelder and her family, Nicola Anthony, Marie-Pierre Mol, Guillaume Levy-Lambert, Sean Soh, Scott M. Anthony, Angie Png, to the family of Mohamed Nikmikail, the readers and reviewers on Goodreads, and the future readers of the book. This list is not complete, of course, and as all lists go, I apologise if I’ve left someone out. I’m not the best at making lists, to begin with; I always leave something out inevitably as my memory is a sieve these days. To top this, I hate shopping lists, Christmas lists and wish lists; it’s just me, I know, as I feel lists are constraining, even as I understand their necessity.

To those who attended the Book Launch

The Official Book Launch has come and gone. There are people there to thank too. June, the book reviewer who came to listen to the dialogue between Raymond and me, who then asked pertinent questions that kept the conversation going. If you’re reading this, June—thank you. To the people who brought their children who stayed quiet for an hour to listen to three adults (Raymond, me and the moderator) drone on about representation, the wayang and writing—thank you for listening, you were superstars! Of course, to the organisers of the launch: The Arts House, the Singapore Book Council and National Arts Council, thank you for opening up a space for promoting SingLit. Thanks go to Axl Loon, Elizabeth Lim, Hubert Hu, Andrea Liu and Edmund Wee for attending. Mostly, thanks go to my sister, Emily Wong-Lim who came with her family and an old friend, whom I haven’t seen in more than 25 years; it was great to see you there, Yvinne. To my niece, Audrey Lim for showing me how social media can work on getting the book out there.

Authors and Bloggers

The book authors and bloggers who gave me a space to talk about Open. Don Bosco, Samara Lynch and Dorothée Oké of Groupe de Press Relations Lyon—thank you, merci!

Now, if I’ve left someone out, it is unintentional. Help me by prodding me with a message.

Last but not least, to all the mummies and daddies who encourage their children to read. You know that your children’s imaginary worlds begin with books—thank you!

The Adventure Continues

The next few months will be filled with book readings, events at schools where I’ll be doing more book readings and talking about how literature can help foster a more compassionate and inclusive world. Come and find me to say hello if I’m in your neck of the woods. Thank you!

B is for Behaviour

Bad behaviour is something I don’t abide by, especially coming from my children. What constitutes bad behaviour in my books? Well, when the children ignore me when I’m talking, tops the list. When my children walk away in the middle of me telling them what I’d like them to do, is another, albeit this doesn’t happen often.

I don’t tolerate rudeness either. I consider my children raising their voices at me as rudeness. I also feel that eye-rolling and sullenness when they’re being told off as showing rudeness. And the worst thing my kid can do is to hit me. This has happened when one of them was little.

But what if they weren’t doing all my pet behavioural peeves on purpose? What if these behaviours were a response to something else, like triggers in the environment, for example, and they were merely instinctive patterns of behaviour?

In the book, Open lashes out at a classmate. He’s had enough and there wasn’t enough time for him to register his emotions and his automatic response—the fight response—kicked in.

Children don’t come with instruction manuals, unfortunately. There is no STOP button to press when they’re pushing all your buttons. As you respond to their challenging behaviours either negatively or positively, children also respond in their individual ways when their buttons get pushed. Open’s buttons got pushed that day when he hit out.

The many parenting guidebooks out there are good for tried and tested ways of managing bad behaviour from your children. I’ve read a few and to date, I haven’t one that I could recommend any parents. Don’t get me wrong, all the books written are written with good intentions. But…

…Our children are all different. They are all individuals and one method that worked for your elder kid may not work for the second and/or subsequent children. I know this because my elder child is different from my second. Thank goodness I only have two when the second manifests one of the bad behaviour patterns that I abhor. She throws a face at me when she’s been told off. Yes… I understand: who likes to be told off, right? To date, I still find this challenging behaviour hard to ignore. I try my best but I must admit that I’m almost always close to hitting that elusive STOP switch that could possibly “beam me up” somewhere. There are times, I behave rather badly too. I throw a little fit or tantrum because I got reactive rather than proactive.

At the same time, I’m thankful that my kids are neurotypical children. They come round soon enough and will apologise for their perceived bad behaviour. Then, mummy-guilt sets in and I too come round to how I’ve perceived their behaviour as bad. I ask for clarification, I explain why I was ticked off and they tell me why they threw a face at me…. slowly but surely, we patch things up and come to a place of understanding.

But what if you’re someone parenting an individual on the autism spectrum? What do you do? My heart goes out to these brave and courageous folks who have to deal with challenging behaviours constantly.

I’ve been researching challenging behaviours lately because my second daughter has entered her tweenie years and is starting to get quite challenging.

From time to time, all children can and do behave in ways that parents and carers find challenging to deal with. But kids with Autism Spectrum Disorder (ASD) are more likely to manifest challenging behaviours. But it is good to know that children and teenagers on the autism spectrum do not purposely:

  • ignore or refuse to listen
  • throw tantrums
  • behave in a socially inappropriate manner
  • engage in repetitive self-stimulating behaviours or
  • hurt themselves and others for no reason.

There are reasons for the behaviours they manifest. Knowing what these reasons are will help you to manage them. Finding out strategies will help you help your child cope with his or her emotions.

If you’re parenting an autistic child, don’t despair. There are many support groups in your communities that can offer assistance and advice. Additionally, besides being a great resource, support groups are spaces where you can reach out to even if you only want to moan about a bad day. Support groups are also great for asking questions to other parents who may have had similar experiences to yours—“My child had a meltdown in the supermarket, what do I do to prevent this?”, “My child finds it hard to go to sleep at night, what can I do?” and/or “My daughter can’t stop biting her hand, help, anyone?”

Children often behave “badly” [notice I’ve placed this adverb in inverted commas] for many reasons that they cannot explain to you verbally. Understanding what triggers these behaviours is very useful in managing or even pre-empting such behaviours. They don’t mean to be bad, they are just trying to tell you something.

I know that my elder child gets very grumpy, edgy and anxious when her sugar levels are low. This is usually when she’s hungry and food is late being served. Hence, mealtimes are consistent in our home—we eat at the same time every day. If we were out and about, I made sure to carry healthy snacks with me, so that she gets replenished without spoiling her appetite for the big meal that’s coming soon.

My other kid gets anxious about social activities and when she’s around friends, and will often pull a face when I’m talking to her. I’ve come to understand why after many conversations and we have come up with a sign between us as a “warning” signal for her to stop or to tell her I’ve had enough.

One strategy I read about to help autistic children who find it difficult to communicate verbally is signs or messages written out that they can use to tell you when they’ve had enough. This is what Victoria of Starlight and Stories have to say:

“MAKE SOME TIME OUT CARDS

Often when students start to become upset they find it difficult to put their feelings into words. They can find it difficult to approach the teacher appropriately and worry that their friends will laugh at them. Their fight or flight response therefore kicks in, and you are left wondering why a child has just run out of your classroom and whether they are going to be safe.

A simple piece of paper saying ‘I need to leave the room now please’ printed or handwritten and then laminated can make all of the difference. Agree on the rules for time outs, where the student needs to go when they leave your room and how long they can be gone before needing to catch up on work (I usually say ten minutes, as I want students to have a chance to be able to calm down properly). Then when they become upset they simply need to hand over the card – no words are needed.” (source)

Since Victoria is an Autism Specialist Teacher and mother to an autistic child, this strategy pertains to classrooms. However, I find that this way of communication between parents and children could work too.

However, there will be times when it’s all too late and your child has had enough but haven’t had enough time to register what’s bothering him or her and throws a gigantic wobbly that you can’t stop. I’ve had moments like these too and my kids are not autistic.

When this happens, take a deep breath and let your child get on with it. Ignore the stares from passersby and let your child get on with it. I’ve had moments when I’ve had to hold on to my second daughter when she has had a meltdown. Hugging her tight helped her calm down. Of course, this is a strategy that worked for me. Do what works for you because you know your child best.

Here’s to every parent who is trying their very best—kudos to you.

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 

 

On Synesthesia

Synesthesia is a perceptual phenomenon in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway.” — Wikipedia.

In my book, Open – A Boy’s Wayang Adventure, the protagonist, Open, likes to read. He reads “about anything and everything”. (Open: pp 7). He would sometimes consult Wikipedia when he wants to find out things. He also perceives his world differently from the rest of us. For example, he describes his feelings in relation to one of the five senses—taste. Here is an excerpt from Chapter 7, where Open talks about how he feels on learning that Mama may be leaving him to work in New Zealand.

I will not be seeing Mama for a few months when she goes to New Zealand. It will take more than 10 hours to reach Auckland by plane. That’s very far away. I will not be seeing Mama every day.

“When will you go?” Papa asks.

“They’re still deciding…”

“It’s just that Open…”

“Oh Ben,” Mama sighs. “I don’t know, Sky. He’s not getting better and I don’t know what to say to him.”

I am tasteless inside.

Some people, like Open, are synesthetes. They often experience one sense using another part of their sensory organs. For example, listening to music can trigger a vision of bright lights in some people. In another case, known as grapheme-colour synesthesia, letters and numbers are seen as colours or coloured. Open experiences his world in a lexical-gustatory way, where certain tastes are experienced when hearing certain words or when certain people are associated with particular tastes. In chapter 7, Open feels “tasteless inside” when he hears his mother uttering “Oh Ben”. Like many lexical-gustatory synesthetes, Open expresses his feelings, sadness in his case, through tasting it.

A well known synesthete was Wassily Kandinsky. He experienced visions of colours in motion when listening to classical music. The moving colours correspond to the movement in the music. In his paintings, you will often see dashes of colours—sprays of blues, swirls of violets, glares of yellows, circles of reds, lines of black—rendered in watercolour. Take for example, his Composition VII (1913), the canvas is a mess of colours, distracting to look at. But in this piece, Kandinsky is expressing a profound sense of the spiritual. He often associates and ascribes certain emotional qualities to certain shades of colours.

Wassily Kandinsky is a Russian artist (1866-1944). He was also an art theorist, often talking and discussing art with his friends and in lectures. Kandinsky is credited with being the first artist recognised to have painted the first work of pure abstraction.

Kandinsky is very grandiloquent in expressing the processes at work when painting: “Our hearing of colours is so precise … Colour is a means of exerting a direct influence upon the soul. Colour is the keyboard. The eye is the hammer. The soul is the piano with its many strings. The artist is the hand that purposely sets the soul vibrating by means of this or that key. Thus it is clear that the harmony of colours can only be based upon the principle of purposefully touching the human soul.” (The Guardian, 2006)

Emotions are too abstract to describe in real terms. Associating an emotion to a certain taste or colour, often helps us picture how we feel concretely, in my opinion.

I would be happy to hear what readers have to say about synesthesia. Please leave your comments below. Remember that this blog may be read by children who have read Open and want to discuss the book here. Do remember to be polite and mindful that young minds may be present in this space.

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