Posted in The Autism Gospel

Finding Grace at the Gym

Just a few weeks ago our life was made more complicated. In addition to the challenges that autism already presents, Noah’s pediatrician gently let us know that he was at risk for diabetes. This meant a couple of things were going to need to change – more exercise and better diet. We loathe change.

So we’ve been making small changes. We taught Noah how to ride a bike. (Which is fodder for an entire separate blog post.)bike He now has a myfitnesspal account, as well as a fitbit, to help him monitor his calorie intake and activity. The visual component of both sites really helped him understand our goals. We are going to the gym and hitting the treadmill every day. As it turns out, I found grace there today.

Teaching Noah how to operate the treadmill wasn’t the most difficult thing I’ve ever taught him how to do. He took to it pretty well. He likes gadgets and electronics, so it was instantly easy for him to catch on to the general operation of the device. But there are “side-effects” to Noah’s efficiency.

For instance, the faster he walks the louder he vocalizes. Typically this comes out as an “oooouuuuuuu” sound. This is accompanied by either hand wringing or flapping rapidly to match his pace. As you might imagine, we have encountered stares and chuckles from the other patrons of our local rec center.

I am long accustomed to this kind of thing. Most of the time, unless we are REALLY disrupting others, I quietly cue Noah to be conscious of his behaviors and then let them go. Because the truth of the matter is, he can’t help it. Noah cannot be “un-autistic” for even one moment. And while he is processing a new skill, it is completely unfair to ask him to monitor himself even more than he usually does for the comfort of the people around us. I figured, “We paid our dues like everyone else here. We are fighting for his health here. If he has got to flap, then he can flap and ‘ooooooouuuuu’ all he needs to. I refuse to be ashamed.”

gymToday, I took my place directly behind him, as usual, on an elliptical trainer. I can monitor his movements there, as well as the behaviors of the other patrons of the gym. He was doing his thing, warming up at about 3.0 and then speeding up to a slow jog when the vocalizations started. It was fairly crowded this morning and I immediately saw people begin to stare.


And then, we were the recipients of amazing grace.

One older gentleman was watching a little closer than the rest. I noticed him get up from his position on the exercise bike and begin talking to the people around him. He was smiling and gently nodding in Noah’s direction. Each person he talked to smiled in return and nodded their heads. After he had talked to every person in the exercise room, he made his way in my direction. Taking my ear buds out, I readied myself to give our standard Autism 101 explanation.

With a smile he approached the elliptical trainer I was killing myself upon and said, “I’ve noticed your boy.” Before I could launch into my 3-minute spiel, he continued

He seems like a good boy. I could hear him making some sounds and turning his wrists about. It made me smile because I’ve got a seventeen-year-old grandson just like him. Autism has been a gift for our family. But I know it’s hard too. I hope you don’t mind that I took the liberty of letting everyone here know what a good job he was doing despite his limitations.

He went on to tell me that he understood how exhausting it was to be a caregiver. He explained that he had just recently lost his wife of 52 years to Alzheimer’s and that he could sympathize with constantly feeling the burden of explaining behaviors that seemed odd to the world. When I shared about Noah’s health concerns and why we are making such an effort to be at the gym, he told me that I was an “outstanding mother.” Then he asked permission to talk to Noah. When he did, he clipped the emergency strap to Noah’s shirt and patted him on the hand with a smile.

It has been over 10 years since our diagnosis and I’ve never had someone intervene on our behalf like this. It’s only been a few hours and I’m beginning to wonder if he was just an angel or apparition caused by elliptical-trainer-exhaustion. But it is possible that he was just being kind and extending grace where he saw need. Operating out of a small amount of knowledge about autism and his own experience as a caregiver, he opened his heart to dispense a few kind words on behalf of Noah and I. It was a small thing – but not to us.

And this tired Mom, who doesn’t have nearly all of the answers that she needs, will be eternally grateful.

Posted in Uncategorized

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.