Monthly Archives: March 2020

I am 18, what can I do

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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

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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

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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

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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.