Category Archives: English

Death before dishonor

Typically autistic people die at age 36. I am so aware of fraility, may I shock you. I wish to be dead before this age.

It will be great to die before my parents because they see me as a burden, and I still have to live with them. It is difficult in my current situation to hold a stable job, regardless of economic conditions. Without a stable job, it is difficult to support myself in conventional means. Do not expect me to do things like doing gigs like food delivery. I do not expect them to last forever, I do not think I can do this even at age 70 or upwards with increasing physical limitations, and then, black swan events happen.

I have not experienced war, or so everyone around me thought. We are now getting closer to World War Three than ever before.

Then if the clock is ticking, and I have so little time left in my life, wouldn’t it be better to live every day as if it’s the last? Why not live life every day in a way that is close to our beliefs, and our principles?

I do not think food delivery is shameful. I do not think driving cars for hire is shameful. They never were. And never are. Even if they get automated. Automation is the least of my concerns, even if they effectively replaced the labour like my parents’ generation, making me even less employable regardless of my conditions.

However, if I do these jobs, I may get the resources to support myself, but it may not be the best use of my limited time in life. Say I have only 36 years to live. Between now and age 36, what do I see myself at age 36?

Other people, at age 36, have a property, a car and a family. It is possible for ordinary folks to have a property, a car and a family. They are the stable bedrocks of life. A property is a necessity in any stable society, a family is the anchor of the turbulent waves of life, and a car is the tool we transport the entire family. Then we ask ourselves, why cannot we be them? Are we any less capable or motivated or hardworking than these ordinary folks?

We are certainly not any lesser than the other people. Other people take 10 years to get from university to the stage when they can make a difference professionally. It may take us a longer time. Who knows we may even die before the full impact of our work can be fully realized. All the more we keep doing it. We do all we can for our way of living, our life.

I just want to hustle and live, do it well, and do it with pride and honor. I will not attempt to let short-term gains sabtoage whatever things that will steer me away from the longer term goal, that is, to fully bring out my time and efforts into something that not just feeds me, make my community better, but bringing out the best within me and connecting me with most other people, the way all of us better could together.

When we are together, we move together.

I am 18, what can I do

If you were an American (not too sure for other countries), even if you needed a caregiver 24 hours of the time, at age 18 you are an adult. The transition is forced onto everyone. Just because I can talk or write does not mean I have fewer needs, on the contrary, I need support similar to the way the nonverbal autistic sibling need support. It is not functioning, it is still a need.

Ideally, there should be support for autistic adults as long as they need, even if it is lifelong and expensive. As I learned the hard way in my life, it is not the case. We all have to adult and we all grow up.

It is also good to try to plan for adulthood as early as possible. At age 12 or so, one has to begin to train for jobs. In East Asia, where shared autistic homes are prohibitively expensive and seemingly impossible to have, autistic people can find work arrangements. Not to say they are paid lowly, but there is little for these people to share their experiences. I would like to do something about hearing their voice, however, the biggest obstruction would be the organizations that train and work with these people. It is more likely we autistic people are dumped and forced to accept any work arrangements that come in the way, and not fully consider our strengths, our desires and goals, and our motivations to work towards our goals.

However, my view of ageing out is shaped by an experience that jolted me to the ground: my autistic buddy’s mother passed away, he could not find suitable full-time employment as a job placement office only gave him part-time employment, he could not find any more part-time roles, and he was forced out of his home because he could not pay the bills. He is rather verbal and is emotionally far more stable than me, but he is tested to the brink. He did find temporary housing arrangements with our mutual friends. This brought me to think: if my mother (my family’s breadwinner) suddenly dies for some reason (which is becoming more grim than ever), what will I do?

For numerous reasons, I do not expect to claim any insurance payouts. I do not know whether I have to pay for my parents’ healthcare, which are not universal or free in my country. I do not really have enough to feed for myself, even though I do my best to save, or just spend on things that enable me to take side gigs that pay me to pay the bills.

All I know is, transitioning is an ongoing process. Everyone should be aware and doing something about the inevitable stages of life: growing, ageing, being sick and dying. We have our different understanding of life. To my experience, it may surprise to you but I find highly successful doctors and lawyers not ‘getting’ ageing as well as younger people who are socially inept, speak minimally, but somehow get ‘moved’ by the thought of ageing . Some day, though, we all will learn.

‘Autism Awareness’ Stops Here

It is this time of the year. Those people are talking about inclusivity and acceptance. It is the ‘World Autism Awareness Month’, or what I call the month, April. 2 April is particularly painful as it is World Autism Awareness Day. Even with pandemics and fear, I see nothing but even more fear mongering surrounding ‘autism awareness’.

When the largest autism groups you know still has the puzzle piece as a logo, you know it is not the organization you expect to contribute meaningfully in. Even if you do indeed have an advanced professional degree which can add to that said organization’s capacity, they not only do not let you on board, or speak up for you, they are complicit in their radio silence when those very kind of negative stereotypes and misinformation keep you down from fulfiling your potentials to your community. Then you know you cannot carry on, and you are stuck between the rock and a hard place.

At least in countries such as Australia and the UK, people still get heard and the injustices are at least addressed. I particularly like it that in the UK, with the general nastiness through austerity, Brexit and coronavirus, autistic people can be part of the positive force that do good and act for society. I will even go on and say autistic Brits present themselves as what would happen to ordinary Britsh people when they are systematically left out, they seem to be so resilient, they work even harder to prove their existence as a community and be the best they all can be.

This is what I aspire my ideal autistic community to be.

We do not want any form of pity or awareness. We just want to be able to do what is best for our society in our own way.

A major landmark with blue lighting alone is not going to bring good for autistic people. It is in the unseen forces, the seemingly invisible little things, that deliver real change autistic people need.

We want to be able to express and live out our lives in every setting we can, without fear or artificial restrictions. Knowing the practicalities, opportunities and limits all around us, we will be appreciative when we are able to cook and clean for our families, work in a job we enjoy and can do well, and participate actively in matters that affect us. Aren’t these very human needs? We may not be able to do some things without adjustments and accommodations, but thing is, we can.

Instead of awareness, how about a change in attitude. We, autistic people, like to contribute to society just like the next human being before and after us. We just want any and every opportunity we can get. And make the most out of what we have.

Then this April will be pass much quicker. After all, April should just be another month, maybe except if it’s your birthday.

We are totally in

Autistic people are often not contributing where they can best contribute in conventional settings. However, this does not mean autistic people are definitely less capable than ordinary people. On the other hand, autistic people should revel in being looked down upon, and press on being the awesome people they are. Autistic people are human beings just as you, me and every human being.

When we hold our heads up, at least we are doing something about our lives, regardless of our conditions. Our lives all have to go on. Why not go even stronger than before. Resilience is within us and we all can get back, knocked down 7 times get up 8, that is all within us. That makes us all human.

Also, whenever we are downvoted, excluded or ignored, it leaves us all a long and narrow space to reflect: What really matters to us? We like something and we have our unique spin on that something. We should not be silenced, but all celebrated. We can.

 

Working out autism

If autistic people are not getting hired, why not keep doing things that make them no different from work?

Autistic people keep saying they are unemployed and they need help. Often they are not able to do full-time jobs nor getting the pay needed to pay bills. They may build experience in having a job by volunteering in animal shelters, schools or even charity organizations, but they don’t come every day and they often don’t pay much.

Families often get frustrated and angry that autistic people are lazy and troublesome people. I think autistic people need help in paying bills and not doing a job.

The outcome of having a job or anything else is to pay the bills and do something good all the time, so they autistic people should focus on doing anything that pays the bills.

Even without considering autism, rational people will only work when working brings about a better outcomes, brings a marked improvement in life, than not working. Autistic people are human beings too. They are every bit as human as the others, for better or for worse. There is an inherent goodness in all human beings just as there is a common weakness, and we are subject to the tendency to not do anything without a reward. Therefore I can totally understand why autistic people often tend not to ‘work harder than the other people’ when they need it, even if they may need to work three times harder than the next person.

When working is demeaning, does not bring extra life experience, skills and pay, why work? Do something else enjoyable. There is nothing autistic people can lose. Autistic people have no opportunity cost because there is nothing to lose.

I would go on further and say, for all of us, autistic or not: within our budgets, monetize our joy, monetize our pleasures! Also, expand on our dreams, scale up our desires.

If we like photos, when we see something, shoot them. Share them.

If we like writing, even if it’s giberrish, note it down. And publish them somewhere.

If we like playing games, no matter how atrocious or modded it is, livestream them. Talk or write about it.

And allow us to be honest with ourselves.

How can we connect with other people with our interests?

It is difficult, but without an ounce of honesty, we may not know why we starve. Our lives will remain miserable.

What the autistic person needs

We do not merely want a diagnosis. We want a whole sense of who we really are. It should not be just by our disability or what we cannot do. It should be about us, not just the gifts we can contribute to other people, but also how we relate with our family, our community, and our world.

In the field of Traditional Chinese Medicine, although we categorise autism as ‘five delays’ and see it as the lack of ‘pi’ (digestive and absorption system) function, there are so many approaches to achieve effective, holistic goal of better health. We often have acupuncture, herbal medicine, nutrition, and especially qigong and meditation. There is no single magic bullet for autism. Rather, like life in a western society as a whole, Traditional Chinese Medicine talks about wholeness and holistic approaches to things. Autism is certainly not something you will get rid of when you do detoxification on yourself.

I dislike meditation personally. I find that I have too many things that float around, and there is little support I get in my mainly western influenced society that keeps me from what my parents do. My parents certainly grew up in a different era where their societies are much more inclined towards China and Asian-centric thought and practice. It does not help that as a recent convert to Christianity, I face many forces against meditation, though mindfulness is well encouraged.

It certainly works if I fix my eyes on scripture and am attentive to the Lord. I am taught to attach myself to the Lord and not detach from the world. It works better because I had this experience before I faced Christianity, I tried to meditate and remove ideas and things, all I see is fiery balls of flame and random thoughts that seem to make no sense. I felt even more lost and angry than ever as I never gained mindfulness.

Therefore I think the autistic person needs not just treatment. We need a much holistic approach than recognising and working on our deficits, or even scant recognition of what we can do. We are who we are. We want – maybe more of a need – guidance, perhaps much more than others, and a proper direction, to lead us to where we need to go. To get to our destination, we have to be first human. We have to meet our human needs of being fed, being clothed and being safe etc. and, to move even further, be valued and feel worthy. Also, it will be good to align the ‘stars’: we should make sure, whenever possible, our self, family, society and world are all supportive of our efforts. If anything does not work, we should see what is the needle that we can move first, and it should best be the self (no matter what our society is, collectivist or individualistic, we can somehow work it out) that changes. Find our selves, and get along with it.

Be our own

I do not want to be merely an appendix to someone else’s destiny. Everyone has a capacity to love and feel, and I feel that nothing should stop us be our own people.

I learnt that from family. It is often the case where children, when they can afford it, reward parents with the trip of the lifetime, but most often in their terms. However, having being exposed in cross-cultural settings, I learnt there is more than just doing things out of what you think you like.

Respect is two-way traffic. You do actually want people to not just treat you well, but allow you the space to be what is you. In Asia, for parents, it means giving parents the opportunity to decide what are the terms they want to feel the love.

It is easy to say: I want to bring you to Taiwan, and then maybe the parents just go around Taiwan. If that’s the case, I believe my parents would have visited Taiwan multiple times. i intuitively felt, based on my understanding on the mere occasions my parents traveled since my parents and my sisters went for their last trip together, that it has to be a trip that my parents decide on their terms. All of the trips thus far are TCM-related trips where it involves a TCM meeting on paediatric medicine.

Just because I am the only sibling close to my parents (and for that, a circumstance I will like to explain in detail when I am even-minded to explain with factual and observational clarity) doesn’t mean I know more about my parents. However, I know for sure, my siblings just do not see my parents as full working professionals, the way that they want to present themselves to us and our children. For this, I prefer silence and I do not want to engage with my siblings. If they are unsupportive of my parents the way they want to ‘get’, then I believe they should not have a piece of my parents’ legacy – which, unfortunately, they will get. It all begins when I see my parents being slighted.

If society is not discriminatory of me and people like me, which I do consider as the biggest consideration in my life, I am willing to do anything and everything ahead of me.

Is TCM any inferior to other worthy professions? TCM is more difficult than many other professions out there, which are difficult. Do consider, though, TCM is the combination of life sciences, traditional Chinese philosophy, and our understanding of our land, air and time.

I believe the world, including the half-baked Singapore autistic and autism communities, need to open eyes to see new possibilities in TCM. The family is indeed the most critical of autistic success, the parents have to strike a balance between letting the autistic make individual great decisions and contribute fully to society, as well as giving him the time, resources and heart to empower the autistic individual. The parents must not set the agenda, for this is a surefire way of failure in the life of autistic people.