What autism looks like for Elijah

I had originally intended for my next post to pick up right where I left off, going through the different signs that pointed to autism that started showing up in Elijah through the years. But, I decided to pause and pick that part back up later, because there is something else that I feel really needs to be explained. Before I go on explaining exactly what Elijah’s autism is, I think I may need to take some time to talk about what it is not. Why? Because, as with any label, there are stereotypes associated with it. Everyone has an idea of what autism means. Some may form these ideas based on education or formal training, or direct experience with individual with autism, whereas others may base them on something they saw in a movie or an isolated encounter with one autistic individual. Even the most educated person on the topic hasn’t met everyone with autism. And just as each person on the planet is different, what autism looks like for each individual is different. So, when you hear that my son has autism, if you are envisioning him flapping his arms and rocking back and forth, you are picturing him incorrectly, because this has never happened. If you are imagining that his voice sounds flat and unemotional, you are also incorrect. He speaks with a lot of inflection and enthusiasm, actually. Are there individuals with autism who do these things? Of course. There are a lot of them, actually, but Elijah isn’t one of them. And that is why I decided to write about this topic today. Just because he doesn’t do some of these things doesn’t mean the diagnosis is incorrect. I have had multiple people say, “he seems so normal when I am around him.” On one hand, I guess that’s a good thing, he obviously has the skills to be able to handle certain situations and appear to function well. But, on the other hand, it bothers me that people believe that him “seeming so normal” when they see him means that his autism is any less severe when it does show up. Because, believe me, when it shows up, it really shows up, and it is not easy for anyone who is with him to deal with at that moment.

            School is the environment that Elijah finds most stressful and overstimulating. So, the very worst of his symptoms show up there. In fact, that is why it wasn’t until he had consistently been in full days of school for awhile that we started really noticing how severe these symptoms were, and why the diagnosis came at age six, not in toddler or preschool years. So, those who see him only at school actually have the complete opposite reaction to the, “he seems so normal,” group. School workers were probably wondering how we didn’t notice a long time ago how severe things were. But, that is because the severity of the symptoms is far less prevalent at home and in other places that it is at school where there are certain expectations.

            So, having said all of that, I will go back to explaining what Elijah’s autism is not versus what it is. One characteristic of autism that is very common is a speech delay, or lack of speech at all. In fact, for children who are diagnosed young, this is often one of the very first red flags. Elijah was the opposite, actually. He started talking early. By eighteen months, he was speaking in sentences. At age three, he was using words that children his own age didn’t even know the meaning of. To this day, his vocabulary is quite advanced, and he is extremely well spoken.

            Now, let’s talk about stimming behavior.  Stimming, by definition, is “the repetition of physical movements, sounds, words, or moving objects. Stimming has been interpreted as a protective response to over-stimulation, in which people calm themselves by blocking less predictable environmental stimuli, to which they have a heightened sensitivity. Stimming behaviors can consist of tactile, visual, auditory, olfactory and vestibular stimming.” As I mentioned earlier, Elijah’s stimming does not include rocking or flapping. So, what does it look like?  Elijah’s most common stimming behavior is humming. Because this is a more unconventional type of stimming, we did not recognize it as such for years. In fact, for years he was told to stop humming and punished for humming, after repeatedly being asked to stop, in places where he was expected to be quiet. This is painful for me to say now. But, we didn’t know. And now, it makes complete sense why it seemed like he never listed when we told him to stop. He couldn’t. Most of the time he was not even aware he was doing it. I received notes and notes from preschool teachers, his kindergarten teacher, and now his first grade teacher about the humming. They all said the same thing. “He hums when he is supposed to be quiet. Other kids can’t hear or can’t focus. We ask him repeatedly to stop. He just keeps doing it.”

            Another stimming behavior is pacing/ running, often bumping into things (intentionally) while doing it. This behavior is also often accompanied by humming. His current teacher has been amazingly accommodating about this one since before he was even diagnosed with autism. He is seated in the back of the room where he can get up and pace back and forth as needed without being a distraction to the class. At home when he does it, he holds his arms out as he approaches the walls so that he can run into the wall and feel the impact without hurting himself. He is craving not only the movement, but the proprioceptive input from feeling the force of the wall.

            Chewing is another stimming behavior/ attempt to obtain sensory input. His preferred item to chew is paper. This one is new as of this school year. In fact, I had never seen it at home until a few month ago. When we catch it, we are usually able to successfully replace it with gum, but it happens at school often as well. School is where it began. He also likes to shred Kleenexes or paper towels, then chews on them as well.

            Yet another stimming behavior is a sound of distress he makes when he is extremely bothered by an external stimulus that seems to come right at him. An example of this would be when he hears the Peppa Pig song I mentioned in one of my previous posts. He makes that sound over and over until the song is turned off, often while also covering his ears.

            Another area that I find especially important to mention is empathy. One characteristic that can be present among individuals with autism is lack of empathy. This is an area that the psychologist specifically pointed out that she did not observe in Elijah, and I agree completely. Elijah has empathy. He actually has a great deal of empathy. He can identify sadness in others better than he can other emotions, and he worries about people who are sad. In fact, both my children having been watching the movie, “Up,” a lot lately. Every time the part ends with the montage of Carl and Ellie’s love story, he always says, “That man must be so sad without his wife. I feel sorry for him.” The first time he saw it, he teared up. Of course this is a fictional character, but it still demonstrates his capacity for empathy. We have seen it present with actual people as well. A recent example of his demonstration of empathy involves his four-year-old cousin, Anna. Anna has a lazy eye, and has tried several different options for treatment, but none have been successful. Her doctor recommended that she have eye surgery to prevent possibly losing vision in that eye if the condition worsens. When Elijah heard about all of this, he immediately became concerned. “Anna must be really scared,” he said.  “I would be so scared if I had to have surgery on my eye.” Since then, he has asked several times about her eye surgery and even decided to say bedtime prayers for Anna.

            Lack of eye contact is another characteristic of people with autism. Eye contact with Elijah is complicated. I can’t use a blanket statement and say “he doesn’t make eye contact.” What I can say is that his eye contact in limited. Eye contact was a symptom I failed to see for a long time because it doesn’t, and has never, applied to my interactions with him. Elijah has looked me in the eye since infancy. He looked right at me and gave me beautiful smiles as an infant. And, he looks at me now, and holds eye contact for awhile. So, it took a long time to catch on that he wasn’t doing it with other people. He looks me in the eye, along with his dad, brother, his grandmother, and his cousins, fairly consistently. So none of us really noticed it until people outside of our family started to point it out. For a long time, we thought it was shyness. I never looked people with whom I was not close in the eye as a child. I was severely shy. But, I eventually noticed that Elijah wasn’t really looking even at people he knows in the eye very well, unless it was one of us whom I listed before who are in his very close circle. The psychologist who diagnosed him said he never once made eye contact with her in five different sessions. His teachers have reported that he doesn’t make eye contact with them or other children at school.

            The next two characteristics of autism that are absolutely present in Elijah, I will be going into much greater detail about those in future posts, because they are ones that he exhibits very often. These are the need for unvarying routine/resistance to change, and narrow or extreme interests in specific topics. I am saving them for another post because they could each be their own post. They are some of the characteristics that make his autism most noticeable to people who do know him.

            Finally, there is the social part of autism- the lack of understanding social cues, the feeling overwhelmed and overstimulated in social situations, the difficulty relating to and connecting with other people, and general lack of basic skills for appropriate social interaction. He has all of these. Since he started school, he has made exactly one friend, and that was last year in kindergarten. This child is no longer in Elijah’s class in first grade. He has no friends now. Not one. He sits in silence at lunch, not eating at all (we’ll get to this one later also), and not interacting with anyone. At recess, he runs around the playground, back and forth, stimming, not playing with anyone. Any attempts he does make at social contact, which aren’t many, are unsuccessful because he is seen as strange and different by the other kids. He lives in his own fantasy world, spending his days talking to himself about all of the things he loves and all of his big ideas. (His “big ideas” are also another topic that will be brought up later.)

Elijah lacks understanding of how to appropriately follow the rules of social structure in a classroom, which is the cause of many of his struggles at school. He does many things that are considered to be socially inappropriate, but they are not done out of deliberate disobedience, but a complete lack of understanding of what is socially acceptable and what is not. For a long time, it was unclear if such acts were deliberate or not, and he got in trouble often. But now, we have an understanding of the root cause of this behavior, and we realize he just really doesn’t get it.  For example, just yesterday, Elijah’s teacher wrote on his behavior report that he arrived at school, immediately telling everyone he was an artist. He decided he was going to spend his day drawing pictures, until he had drawn one for everyone in the class. The social expectation that he follow the rules and do what everyone else in the class is doing, as assigned by the teacher, is lost on him. He really believes that if he wants to show up at school and create art all day, that is okay, and he doesn’t understand why doing so would not be acceptable.  

This post has ended up being really long. I get started on one thing, and it makes me think of something else, and I just keep going! I think I have covered enough for now in explaining specifically how autism is manifested in Elijah. If you take nothing else from this post, I hope the quote I shared at the beginning sinks in, “If you’ve met one individual with autism, you’ve met one individual with autism.”  Assuming that others you meet will be just like the one only leads to inaccurate perceptions and unrealistic expectations.