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The Autism Gospel – The Tyranny of Normality

When my sister and I were young and would get a case of the giggles in public my grandmother would hide her own smile and say, “I can’t take the two of you anywhere!” Yesterday I felt that refrain in a very real way – we just can’t go anywhere.

We decided to drive up to the mountains after church to browse in some of our favorite antique shops. It was the perfect activity for a rainy Sunday afternoon. Noah loves rainy days. I think the lack of bright sunlight makes it easier for his visual perception. While this is probably not the ideal activity in the mind of any twelve-year old boy, Noah was happy just to be with us. That is Noah’s way.

One of the things that make Noah such an interesting person is how groups or classifications of items captivate him. Maybe this is a trait of his autism, but maybe not. He enjoys museums, aquariums, and many kinds of displays of items that have been grouped or characterized by a common attribute. I think this is a sign of intelligence because Noah uses these opportunities to learn and gather information about the world around him.

His behavior in an antique store is much like that of a visitor to an exhibit. Having been instructed not to touch the items on display, Noah will peer inquisitively around the antique mall categorizing objects in his mind. He is typically quiet and polite as he navigates around other customers. In fact, he is so involved in viewing the contents of the store that Noah rarely appears autistic in these environments. Which is why what happened yesterday was so painful.

He was following closely behind my husband and I when I heard one of the store managers approach him. In a very loud voice she instructed Noah, “Smile! It is a FACT: It takes more muscles to frown than it does to smile.” As you might imagine, Noah was mortified. He had been quietly swimming in a world of history and unique objects when he was suddenly yanked into a strange and uncomfortable conversation he wasn’t expecting. Completely embarrassed (because she said this loudly enough for the whole store to hear) Noah fled.

Now how to proceed in such circumstances is among debate in the handicapped community. Should you just be polite, as Southern sensitivities dictate, and move on smiling in an apology for your child? Or perhaps I should have chased after Noah and quietly removed him from her store? Many of you who have made yourself acquainted with Noah may be wondering if the store is still standing.

Well, for good or bad, here is how I proceeded. I am not sure this is how everyone should respond, but I am frequently asked how I handle situations like this. Since this example is fresh on my mind I decided to write how I handled it and what the situation reveals about our definitions of “normal.”

Upon hearing her complaint about Noah, I quickly turned to her (while, I admit, palming the handle of a cast iron skillet) and presented another “fact” for her. I said, “Unless you are autistic, in which case smiling for no reason is much more difficult.” She realized that I was this child’s parent and regrouped. But she did not apologize. Instead she reasserted her prerogative to judge him and said, “Well, it is still a fact. Point proven.” She sang out the “point proven” part in a particularly arrogant singsong voice. Then she purposefully strode away. I don’t know if she even realized that Noah had run away.

When I turned to Jason, he was standing there with his mouth open. Before I could say a word he said, “He wasn’t even doing anything!” And that is just it. Noah wasn’t displaying one autistic behavior in the moment he was assaulted for being sub-normal. I will return to this in a moment because it is really the heart of what I want to say today.

When I found Noah he was seated with his head in his hands. I quietly knelt beside him and asked if he was okay. He replied, “I’m ok. But I am sorry. It is just like the video said. I am sorry I don’t smile. But I will. I will and I will be ok.” It was then that I realized just how much damage had been done.

Last week Noah viewed a video on autism while doing his own video research. In an effort to explain low tone and lack of emotional affect in facial expression, this video had simply said that autistic people frown more than others. Noah had mentioned to me that he was concerned that people thought he was angry because of his frown. When I found out how the video had explained it, I almost corrected it immediately but I didn’t want to discourage Noah’s research so I let it go. Now, just a few days later, Noah had it confirmed that people with autism “look angry because they frown more.”

In truth, this well-meaning video reduced a complex neurological phenomenon into falsehood. Noah doesn’t smile all the time but to assume that means he is frowning is false. His facial expression is just neutral. In fact, in the store while observing all of the antiques it could probably be described as inquisitive. I told Noah that there was nothing to be sorry about and that it was rude of that woman to say that to him.

Then he began to cry. I comforted him as best I could. Soon he asked if we could please go home. Here is the next thing I did that could be up for debate. I did not leave that store. Instead, I told him that we were perfectly “normal” and should not need to leave. First, that is true. We were not being disruptive in any way. Also this gave me an opportunity to stare this woman down for the duration of our time in the store. I will say that Noah remained upset and nervous for the rest of our time there but I think it taught him that I was not ashamed to be in that store with him. I was, however, ashamed of this woman’s bold mistreatment of us.

Because here is the “fact” (to use her chirpy terminology) of the matter, she had made a decision about what is “normal” that protected herself by highlighting anyone different from her. If you think about it that is really what the designation “normal” does. The act of deciding something is normal is way to also designate something other-than-me as abnormal and wrong.

Stanley Hauerwas describes it in this way:

…the demand to be normal can be tyrannical unless we understand that the normal condition of our being together is that we are all different. If we are to be a good community we must be one that has convictions substantive enough not to fear our differences and, indeed, to see that we would not be whole without the other being different than us. Besides the gift of difference and its importance for the community, it seem to me that [the disabled] also help us to see how to be different without regret.

I don’t want Noah to regret anything about who he is. Should he work to reach out to others through his differentness in order to join in community with them? Absolutely. Does this mean that he should adapt his own needs and behaviors in order to consider others instead of himself? (Phil 2) Yes, it does – as should we all. But should he regret his difference to the point of submitting to tyrannical views about what would make him more “normal?” Emphatically, no.

Noah was shaken by yesterday’s events. His last words before bed last night were, “Thanks for taking up for me with that lady today.” We are still uncomfortable about what happened, but Noah learned that there was not one “normal” thing about that situation. He even pointed out later that one of the only characters he knows that smiles all the time is The Joker.

And he, after all, is a super villain.

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A Whole Lotta Shakin’ Goin’ On

I despise change. Maybe it is my autism showing. Yet I confess it willingly so that you might fully understand how difficult it is for me to open myself up to new things. I hope you will appreciate just how challenging life is right now when I expand on how many things are being “shaken up” right now.

Three years ago I started blogging to help me process some of our struggles with autism. To my surprise I found an audience for both our pain and struggle as well as our victories. Many members of this audience either know us personally or have loved ones with a disability. But some of my readers identified with our struggle because the emotions tied into their own hardships can be reflected in our journey. Pain is universal.

I also began work on a Masters degree in Theology around the same time. The more I studied about God, the more I reflected on his work in my life and in the life of my son. I had always been haunted by issues surrounding spirituality and autism. Questions like, “Will Noah every understand himself as in a relationship with God?” were answered along the way. But more abstract concepts required further study. For instance, if Noah is neurologically “damaged” (clinically speaking), what does it mean to say he is still made perfectly in the image of God? Faithful readers of this blog will note that, very often, we are not treated like we “look like God.”

So I spent the last year of my life writing a thesis on that very topic. My thesis statement reads: In contrast to classic scientific, popular, and even some Christian assumptions about disabilities, a theologically responsible perspective calls us to recognize that neurologically disabled people are just as human as neurotypical people because they, too, are created in God’s imageThis may seem like common sense to you, but if you have ever been treated as “less than” because of a disability, you understand. Trust me, this is a whole new way of imagining what humanity looks like AND what God looks like. It has been the experience of a lifetime. And today, at 3pm, I defend that thesis. (Pray saints, pray!!)

To shake things up even more, I have developed a relationship with Standard Publishing in a way I never could have imagined. They heard the message communicated through my thesis and in my blogs and thought, “Hey…there is something to this the world needs to hear!” I have been partnering with them to write lesson amendments that can be used by churches include children with special needs in classrooms with “normal” (typically developing) children. This relationship is growing and more resources are being created each quarter. I will be posting a link to those resources as soon as possible. Please don’t laugh when we see me referred to as their “Special Needs Expert.”

Because having my picture on resources wasn’t uncomfortable enough, this partnership has led to another one. This winter I presented several workshops for Standard Publishing at Children’s Pastor’s Conference in Orlando and San Diego. INCM (International Network of Children’s Ministry) sponsors this event. I will be featured on in their magazine in an interview about “Special Needs and The Church.” I also shot a few videos about “Recruiting in Children’s Ministry” for them that will be featured on their website next month. (Again, all of you who know me personally are aware just how completely out of my comfort zone I am at this point not only in telling you this, but in my life in general.)

This partnership – you guessed it – led to another. And here is perhaps some of the biggest news and the reason for the change of blog site.

Starting May 14th, 2013 I will begin hosting an internet radio show called “Shaping Special Hearts with Vangie Rodenbeck.” (gulp…there, I put it in writing) This show is co-sponsored by Standard Publishing and cmconnect. The goal of this every-other-week show is to have conversations around topics in special needs and disability ministries. I pray that this can be a resource for churches, ministers, volunteers and parents to help us show the world not only HOW to minister to the disabled but also how the disabled minister to US by showing us what God looks like in unexpected ways.

So this is a new blog site for a few reasons…

  1. I will be able to link resources that I am writing more easily from this site.
  2. The radio show will be embedded on this site and easier to find.
  3. Blogging – which I promise there will be more of – will be easier for people to access my visiting vangierodenbeck.com. The blog will be the main page of this site.
  4. There will also be a page “About Me” dedicated to letting people know how I have chosen to see the “holy in the common place” and the image of God in our struggle.
  5. And for people who wish for me to consult or conduct a seminar for their church or school, there will be a page on this site dedicated to that as well.

I think that is about as uncomfortable as I can possibly get. But I was inspired this morning by a video posted by a Facebook friend in which her child is having a “sensory meltdown.” It brought back all the memories of what we have lived through and continue to struggle with. Her transparent plea for understanding and further education about the struggles families with disabled children have pushed me to post about A Whole Lotta Shakin’ Goin’ On in my life. None of my pain and experience can have redemption if I don’t help someone through a similar struggle.

I am sure your question is: How is Noah handling all of this? Noah tells me all the time that I am “going to be famous because of him and his autism.” He is quite the advocate for autism and has started research of his own. He likes to call himself my “autism guinea pig” with a sly smile on his face. It isn’t uncommon for him to say, “Tell people how much autism is like God.” He is quite the evangelist.

So more stories will follow. More resources will be posted. And you can follow the radio show if you are so inclined. If you know of anyone who can benefit from this, pass it on. I’m always looking to learn from others about ways we can show the world that disabilities aren’t the worst thing that can happen to a family.

Stay tuned to hear what I’ll be involved in next. I’m thinking “Autism – The Musical!” I envision something with banjo music and tons of repetitive motor movements. I want Carrie Underwood to play me:)