Zooming in on autism

"Everyone with Autism is a unique snowflake - no two people are alike."

- Elliot

As we explained in the blog post of February, when you have Luscan-Lumish syndrome, bodily overgrowth, intellectual disability, as well as autism will be part of your day-to-day life. 

Today, let's zoom in on the autism spectrum. Yes, it's a whole spectrum - there are many types of autism.

Autism - please explain!

First of all, autism isn't a disease. You don't have to be cured. Simply put, people with autism have a different way of looking at and reacting to the world.

Source: NHS UK

Okay - but what does that mean: to be on the spectrum?

Autism has come a long way. The first person was diagnosed in 1943. 

According to the book NeuroTribes by Steve Silberman, during the 1970's Holding Therapy was "invented" by an animal behavior scientist (!) as a cure for autism.

"Holding therapy required mothers to "tame" their children by hugging them for an hour each day - by force, if necessary - while gazing intently into their eyes and confessing their intermost feelings. The goal of this process was an emotional breakthrough called "resolution".

In one of the "training videos, a mother lies on top of her autistic daughter in bed, telling her how angry she is because her daughter doesn't listen. 

'How does that make you feel?' the mother says. 

'I can't breathe!' her daughter groans. 

'You're not going to get up until we resolve this.'" 

 

I'm happy things have changed since then. But what is it like to be on the autism spectrum now?

Let's hear it from the people who know. How being on the autism spectrum affects their daily lives. And since our Not So Usual Korean hero, Ye-seo, is a 10-year-old, let's give the microphone to the kids:

As the children in the video explained, people on the autism spectrum not only experience things differently, they feel different. 

"Before I was diagnosed, I felt the whole world was robots, and I was the only human." - Monica

Normality

When we compare, we tend to use words like "normal" and "abnormal". 

"Why don't you just act normal?"

I guess everybody has heard those words at some point in their life. Mostly while still growing up.

What IS normal?

According to the Merriam-Webster dictionary, it is this:

 a form or state regarded as the norm

But who decided that very norm?

Humans.

Right.

Well, I am here to tell you: Normal is what we make of it. 

It depends on:

• which country we were born into (culture)
• our direct community (relatives, teachers, peers, friends)
• what influences us (upbringing, media, conditioning)
• what YOU consider normal.

A cut out from a drawing by Moereezaa

Let's explore "what's normal" with a simple example:

In the Netherlands, where I - the writer and moderator of this blog - live, there are two levels of politeness. The first one is formal. We reserve this one for people we don't know personally, have never met before, or when we want to show respect.

After that first acquaintance, however, it is per-fect-ly normal for the Dutch to call someone by their first name. And if we are not sure, we ask. Whether they're teachers, your grandparents, senior co-workers, regular customers, the older man of the shop you visit regularly - should you know his name.

And if you are out with your co-workers, and you have a great time, don't be surprised to get a hand on your arm, or a nudge here and there.

In Korea - where our Not So Usual Korean Hero and her mother come from - politeness is more than just choosing the right approach. They not only have different levels of politeness integrated in their choice of words. It comes with certain gestures. With space. With bows. 

Koreans hold their drink sideways as they take a sip to show respect to their senior (in age or rank) table companion. They will not address you by your first name. If you are a senior co-worker? They call you Sunbaenim. 

You may say: yeah - but Asia and the Netherlands, that's a huge gap in culture!

Well, let me tell you: even within Europe, the Netherlands are known as different - we are very direct, straightforward, and can come across as blunt, or rude even. By the standards of people from other countries that is. For us, it is - yes - 

completely normal

"Children must feel an invitation to exist in our presence, just the way they are." - Dr. Gordon Neufeld, 

quoted in the book The Myth of Normal by Gabor Maté

Since we are all originals - not carbon copy, an exact replica of our ancestors - I would like to suggest that we are either all normal or none of us are. 

Why? 

Because we might look similar at times but we are really not. We are not a chocolate bar, made from the perfect combination of ingredients, molded into the ideal shape, covered with a coloured wrapper. And then remade over and over and over.

There is no normal.

There is a thing called perception: what we believe is normal. Which is completely different. 

And our Ye-seo? Yes, she has autism. Yes, she has Luscan-Lumish. But that won't stop her from chasing her dreams.

She loves her piano lessons, her English class - she might not talk much, but she likes hanging out with her schoolmates who are there as well. For her, swimming is her pride and joy and it gives her confidence. She has personal training to help her grow as a swimmer. For her physical health, she needs therapy - and look at her go:

Her days may look different from yours - and mine for that matter - but for her day-to-day life is just that, HER LIFE.