Tuesday, January 7, 2014

Autism: "Love the sinner, hate the sin" (or 'On Identity')

EDITED: Please note that one of the articles that I had originally cited regarding Pope Francis and his stance on Gay Marriage was not a valid source. I have since removed it from this post. Many thanks to the reader for catching it, and apologies for my lack of diligence.

While this blog is about our family's journey with autism, and not religion, the two will be meeting in this post. I understand that some of the views I express here might make some of you uncomfortable, and while that is not my intention, I will not apologize for it either. Hard topics almost always make us uncomfortable.  They even make us angry. And that's healthy. Through confrontation comes resolution. 

Being raised Roman Catholic, I was brought up with a rather rigid worldview on what qualifies as "acceptable moral behaviour". These moral imperatives seemed very black and white to me as a young child, mostly because the topics being covered were relatively basic: Don't lie. Don't steal. Don't be mean to others. Try to be a good person. Be nice to your parents and listen to them. For the most part, these seemed like the building blocks to decent human behaviour.

As I aged, the topics became increasingly complex and I learned very quickly that there is a lot more gray in the world of morality than I had previously believed. I knew that many of the church's teachings contradicted what seemed to be to be basic common sense, and I quickly found a peaceful understanding within myself of the difference between the human rules of the church and the divine imperatives of the Church. I came to the conclusion that the 'golden rule' should trump all others: "Love your God above all others, and love each other as you want to be loved yourself." I chose to focus my faith on Christ's instruction that it is not my place to judge the actions or decisions of others, but rather to hold myself to as high a standard of morality as I possibly can, and to continuously seek to better myself in any way possible.

For that reason, when it came to the very difficult theological topic of homosexuality, I was never fully able to accept the cliche of "Love the sinner, hate the sin." Having made close friends who were homosexual, it struck me as impossible to separate the "sinner" from the "sin".

When one is born with certain traits, it is impossible to separate them from these traits. 

They were born this way.

Just as I was not.

Their sexual orientation is as much a part of who they are as mine is of me. As we are all the culmination of the experiences and decisions that we have made, it behoved me to simply "love the human" and leave the rest up to God.

In many ways, this made me an outcast in my faith (though I am intrigued and excited to finally have a Pope that is returning to the compassionate roots of our faith, and appears much more accepting of alternative lifestyles: see here and here and here.)

But being an outcast never really bothered me- frankly, I am more concerned with being a good person than a good Catholic. If that rubs some the wrong way, so be it.

Last week, I read an article by Pastor Micah J. Murray which reiterated my personal views on this topic beautifully. In one of the most eloquently simple phrases I have read on the topic, he says "I’m not going to define anyone by their sin. That’s not my identity. It’s not yours." He's right. It's refreshing to see views like this emerging more and more within the Christian faith. Honestly, it's invigorating. 

So what does this all have to do with autism? 

Everything

Lately, I've been reading a lot of talk regarding the "possible existence" of an "Autistic Identity" and whether or not we should be listening to the voices of the Autistic self-advocates who are imploring us for acceptance. From heated debates on whether or not we should be funding research for "cures", to whether we should utilize "person first" or "identity first" descriptors, the Autism community seems to spend as much time fighting within itself as it does fighting for awareness. I have many feelings about this: sadness, frustration, hopelessness...but the dominant feeling that overwhelms me is, quite honestly, confusion. 

I mean, of course autism is an identity? How is this even a question?

Let's first define "identity":

From: http://www.thefreedictionary.com/identity


i•den•ti•ty (aɪˈdɛn tɪ ti, ɪˈdɛn-) 
n., pl. -ties.1. the state or fact of remaining the same one, as under varying aspects or conditions.
2. the condition of being oneself or itself, and not another: He doubted his own identity.3. condition or character as to who a person or what a thing is: a case of mistaken identity.4. the state or fact of being the same one as described.
5. the sense of self, providing sameness and continuity in personality over time.
6. exact likeness in nature or qualities: an identity of interests.7. an instance or point of sameness or likeness.

In short, identity is- put simply- what makes a 'human' a 'person'. It is the whole of the traits that encompass us, personified and identified by ourselves as being important. 

Language. Culture. Personality. Family background. Beliefs. Values. Morals. Religion. Traditions. Nationality. Political Affiliations. 

These things can not be separated from our essence. Even if they evolve over time, or are even abandoned over the course of our lives, the experience of them forms who we are as individuals. 

 In many ways, they are who and what we are.

And yet, most of these things are socially ascribed. Culture, language, beliefs, values- all of these are socially created concepts, that could have be completely different had we simply been born in a different time or place. In many ways, identity is bequeathed unto us by the society that surrounds us. 

If these mutable traits, thrust onto us by fate or luck, are such important components of who we are, how then can we even begin to weigh the importance of those characteristics that are biologically imprinted into our genetic code?

Ethnicity. Gender. Sexual Orientation. 

Species. Genus. Family.

Neurology.

How can we deny that the wiring and function of our brain, the most dominant identifier of self there is, is not innately part of our identity?

When one is born with certain traits, it is impossible to separate them from these traits. 

All of the current research on autism shows us that the roots of the disorder are at least partially genetic. Other factors, most of which are believed to occur during the actual formation of the cerebral cortex while still in utero, are also believed to contribute to the condition. At this time, very little research indicates that any postpartum environmental factors are involved in the formation of the Autistic mind. 

My son, and all other autistics, were born this way. 

Just as I was not. 

They have never known another brain. They have never experienced the world in any other way. They have never processed the way I process, thought as I thought, heard as I heard, spoken as I speak, touched as I touch.  

Our lived experiences have always been vastly different, from the moment we were born. 

These traits are not just a part of who we are. They are Intrinsic. Essential. Natural.

So when I read something like "I love my son, but I HATE Autism", I am reminded of the cliche above and forced to ask the question: 
But do you even know WHO your son is WITHOUT the Autism? Do you even know where one begins and the other ends?
While Autism is diagnosed and codified based on behaviours, the reality is that- for ALL of us- our behaviours are critical parts of our identity.  Social interactions, communication, sensorial perception, and personal rituals (many of which are stereotypic), these coupled with our inner thoughts comprise the vast majority of our perception of self. 

Who are you, socially speaking? 
Are you an introvert or an extrovert? Do you feel energized by the crowd, or does it drain you? Is touch something you crave or is something you avoid? Are you shy? Outgoing? Quiet? Loud? Do others see you as warm hearted, or cold and calculating? Do you see the world from an analytical viewpoint or do you feel it? 

How do you communicate? 
Are you quiet or loud? Do you use formal language or do you prefer slang? Do you have a hard time understanding metaphors or are you a brilliant user of symbolic language? Do you vary your inflection, or do people find you monotone? Do you hide your feelings or wear your heart on your sleeve? Do you cry in public? Do you cover your mouth when you laugh? 

How does the world feel to you?
Do you get too warm or too cold easily? Do you love the sensation of flying through the sky, like on a rollercoaster? Are you afraid of falling? Do you love olives and anchovies? Can you fall asleep without your blankets? Do you love to snuggle up or is too much 'touch' for you? Do you love loud concerts, or would you rather keep things quiet? How do you adapt to change? Does bright sunlight hurt your eyes? Does wool make you itchy?

What are your rituals? 
Do you brush your hair one hundred times before bed? Do you bite your nails? Pick your nose? Crack your knuckles? Tap your fingers? Bounce your knees? When you are upset, do you curl up into a ball? Do you sometimes find yourself slowly rocking back and forth? Swaying side to side? 

Have you asked yourself why you do these things? 

Do you have an answer?

And would you be able to change any of these traits simply out of desire to? 

Probably not. 

You might learn to adapt, 'overcome' or otherwise 'control' your social self. But you will probably never turn yourself from being an introvert into an extrovert, or from being generally quiet into becoming a talker.  You may learn not to bite your nails, but you will likely still find a way to satisfy your need for oral stimulation. 

And that's ok. We wouldn't want you to. Otherwise you wouldn't be the person that you are.

Yes. You are more than your behaviours. But you are also not seen as less because of them.  And you are not told to hate these traits about yourself, or indoctrinated into thinking that they are the product of some monster, external to you, that has taken over your body and your brain. 

We recognize our own behaviours as being intrinsic to who we are, and yet struggle so much in accepting the same thing of those who are different from us. 

Who you talk about. 
What you find interesting.

What you find funny. 
What you find beautiful.

What brings you comfort.
What makes you anxious.

Who you love.
How you love them. 

How your brain works. 

All pieces of the puzzle that comprises our identity. 

Some puzzles are more complex. They have more pieces and the picture is busier and more abstract. But, when push comes to shove, each piece is connected to the whole. 

We are the combined total of our parts. 

I can not love my son and hate his autism. 

Yes, I can struggle with his behaviours, just as I struggle with my own.  Yes, there are things that I wish were just a little bit easier, for both of us. 

But I can not love my son and hate his autism. 

It is part of who he is- and in many ways defines a significant portion of his identity.

To love Sam is to love all of his parts.

There can be no other answer. 





4 comments:

  1. Exactly! So glad I found your blog!

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  2. Again, your positive attitude about autism is refreshing and much-needed. I would point out that the quote you give from Micah J. Murray still explicitly calls homosexuality a "sin," and also I'm a little confused by the fact that saying "That's not your identity" seems to clash with your conclusion that autism *is* an identity.

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  3. I have no words for how much I love this post. And your blog . Everything I've read.

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    ReplyDelete