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In the World

  • Posted on March 7, 2014 at 10:00 AM

If being “of the world” means giving into worldly temptations to behave unethically, than being “in the world” means living in and interacting with the world. If you’re familiar with autism, then you can see how this might be a problem for children with autism.

When Alex was little he didn’t live in the world. Sure, he shared the same physical space we did. But he was rather unobservant of the things and people around him. He assigned such a different sense of importance to the things around him that it was very, very difficult for others to relate with him and to interact with him in a way that he would appreciate.

Even now, after extensive therapy, my boys assign different senses of importance to the things and people around them than “normal” people do. This, in and of itself, isn’t a problem. However, this tendency to perceive and interpret the world differently makes it hard for my children to relate with others. It makes it hard for them to interact with the world around them. It makes it hard for them to tolerate (from a sensory perspective) the world around them. In short, it makes it hard for them to live “in the world.”

When I first started delving into the autism community there was a rather large and seemingly significant group of self-advocates with autism who said they felt like aliens from another planet. This metaphor seems to have died down, in part because it tends to justify exclusion tactics and reinforces the idea that people with autism aren’t “human enough.” Yet, it did help, in some small way, for me to better understand “where” Alex “was,” or perhaps, “where he was coming from.”

People with autism aren’t aliens. They are human beings and part of the range of normal human divergence. That means they have every one of them has the right to live “in the world” just as much as anyone else. To achieve this goal, one thing “we” do is devise and utilize therapeutic services that help people with autism better acclimate themselves to the world. We devote a lot of energy and resources to this strategy. A less recognized and less well-resourced strategy, however, is adapting the world to be more inclusive and accessible to people with autism.

As far as I can tell, people who are mostly “of the world” tend to expect their fellow human beings to adapt to the world and the societies we’ve collectively created, either not knowing or not caring that the world and the societies we’ve collectively created are preconditioned to serve the “majority” or the “norm” as determined by those who are good at getting power in society. People who are “in the world” see the world we’ve created as being flexible and changeable, recognizing that we can and should adapt the world and our societies to be more inclusive and accessible to all people, regardless of the nature of their differences. This is the way I choose. This is the work I strive to do.

Of the World

  • Posted on March 5, 2014 at 10:00 AM

When I took on this whole parenting thing, I didn’t want or expect children with autism. I knew very little about autism, disabilities, or my own neurological differences. I wasn’t an advocate. I didn’t even know that parents needed advocacy skills.

That being said, I didn’t want or expect “normal” children either. Both my husband and I are different from the norm. Part of that difference—part of what we’ve come to understand about ourselves through our efforts to raise our children—is that we’re neurologically divergent. Mostly, though, we’re just weird. And we actually like it that way!

“In the world, but not of the world” is a common Christian phrase used to describe the relationship Christians are expected to seek with their surroundings. The general idea is that Christians are called to live in and act upon the world—love your neighbor, do good unto them that hate you, etc.—but are not supposed to be of the world—seduced into worldly beliefs, worshipping idols, etc. It’s a delicate balance between maintaining our beliefs and acting on them.

When I think of “normal,” I think of people who are “of the world.” I think of how “business ethics” is accepted as an oxymoron. I think of how bullies are accepted in schools as part of the way things are and always will be. I think of how people think it’s unrealistic to expect us to end things like rape, molestation, and domestic abuse. I think of how it’s “normal” to cheat on your taxes or steal from your employers. It’s “normal” to use or manipulate others. These behaviors are perfectly normal, even expected, and yet there’s nothing admirable or praiseworthy about them. They are “of the world.”

Now, I’m not saying everyone who is consistent with the neurological or physical human norm do these things, nor am I claiming that people who are not consistent with the neurological or physical human norm don’t do these things. I’m just saying that when I hear “normal,” I think of the many unethical and irresponsible “normal” behaviors that permeate my society and the world.

I never wanted my kids to be normal!

I suppose that made it easier to accept my children as they are for who they are. Then again, I accept my step-son, who is neurologically normal, as he is for who is. I try to teach all of my children how to live good, responsible, ethical lives. I don’t want any of them to settle for being “of the world.” I don’t want any of my children to be normal.