Getting to Know Will Part 2: Weaknesses

I believe every child has strengths and weaknesses and it is the job of the parents to help utilize those strengths to make the child the best they can be. There are a lot of positives that we see in Will that give us hope that with the right kind of help, he'll really be able to thrive. At the same time, Will's weaknesses not only tend to make every day life difficult for both us and him, they also make a lot of sense given his diagnosis of ASD.

Once again, I'll add my disclaimer that what I'm sharing is mostly my own opinions and observations as a parent and that while I feel like I know Will very well, my knowledge of ASD is still quite limited. Information I have received from professionals, other parents of children on the Autism spectrum, as well as family and friends and my own research have helped me pick up on a few more traits and behaviors in Will that make his ASD diagnosis even more apparent.

Weaknesses

Safety / Self Care

Will seems to have no concept of danger or that it if possible for him to be hurt or injured. If we are in a parking lot, the sidewalk along a busy street, or even someplace indoors like a shopping mall, he will take off running if one of us is not firmly holding his hand or his arm. It doesn't matter how many times we tell him he needs to stay close to us or how much we try to explain what might happen if he runs away. If he sees an opportunity for freedom, he will take it.

Even if Will is seemingly contained indoors he can still manage to escape. We live with my parents and their house is on a dead-end street. It would say it is about half a mile from their driveway to the intersection at the end of the street, which is quite busy. Once, when all four of us adults were home, Will somehow managed to escape through the garage and by the time Ashley and my mom realized he was gone, he was already well on his way to the intersection.

When they found Will just before he reached the dangerous intersection, he wasn't scared or even the least bit worried. He was smiling and acted as if a three year-old walking down the road alone a half mile from home was the most normal thing in the world. We now have those door-handle covers to prevent him from opening the door to the garage and we make sure all other doors are dead bolted with the key out of reach so that he can't get away.

I mentioned before how Will likes to build things and for the most part, it's quite impressive and shows how creative he is. The other side of it is that he can figure out how to climb on furniture or stack chairs and stools on top of each other to reach high places. If you turn your back for a minute, he will quickly scramble on top of bookcases, countertops and dressers. When you chastise him for being naughty and pointing out how dangerous it is to climb on things, he will just laugh at end up trying again later.

It's stressful knowing that your child is capable of putting himself in a position to get hurt but that he has no inherent fear of injury or danger and it impacts our lives greatly. Taking Will to new setting or a public place is stressful because we have to be especially on top of him to keep him out of harm's way.

Communication

I would definitely describe Will's communication level as being "verbal" as opposed to "nonverbal". He was evaluated by a speech and language pathologist who helped demonstrate to us that he can fully understand the things being said to him and is capable of putting together sentences that are at the level one would expect for a child his age. However, his spoken communication is not practical or pragmatic. In other words, although Will is capable of understanding the words people say to him, and he has the ability to respond verbally, much of what he does say either doesn't fit the context or the responses he gives aren't useful. Let me provide some examples.

Will generally doesn't do well with questions that start with the words "why" "how" or "when".  In fact, if you use those in a question, he just won't respond. You can ask things like "who is that" or "what are you doing" and he'll answer correctly pretty much every time but the other question words seem a mystery to him. Likewise, despite having an excellent memory, Will won't answer questions about things that happened in the past. It doesn't matter if it was last week, yesterday, or an hour ago. If it's not happening right now, Will doesn't seem willing to talk about it.

Along the same lines, Will doesn't verbally express "like" and "dislike". He also has never used the word "favorite" correctly. Most kids his age seem eager to tell anyone who will listen what their favorite color, food, song, and toy is. I can tell you what Will's favorites probably are in these categories but not because he's told me.

A lot of the time when Will doesn't know how to respond to something we've said or a question we've asked, he will fall back on repeating a line from a book or tv show. This comes back to one of his strengths, which is that he is good at memorizing and repeating certain words or phrases. Sometimes when we are trying to communicate with him, the ONLY thing he will say is stuff he's heard from tv shows or movies. It's frustrating because while the words that he says may be clear enough that you can discern the content of what he is saying, it has no meaning within the context he is saying it in. Here's an example:

I think I just asked Will what he was doing with his sticks. In response, he says "Oggy and the Cockroaches dot com" which seems to be a reference to a random french cartoon he found on Netflix months ago about a cat named Oggy who is tormented by three cockroaches that live in his house. SIDE NOTE: the show is a poor knock-off of Tom and Jerry and not worth checking out. At no point is the website for the show ever mentioned but Will still somehow decided to take the title of the show and add "dot com" at the end. It makes no sense, has nothing to do with what I was saying to him, but Will just kind of does his own thing sometimes.

The last bit about communicating with Will has to do with him repeating back things that we say to him. For example, we might say "Will, do you want to eat mac and cheese or peanut butter and jelly?" and he will respond by saying "Want mac and cheese or peanut butter and jelly?" This is something we have learned is VERY common in children with ASD and it is called echolalia. Often when he is repeating phrases back to you, he does it in this weird monotone voice. As a result, he sounds kind of robotic. In fact, I've joked with Ashley that in those situations Will seems like a robot that was programmed to act like a child but the robot is really bad at actually pulling it off. 

If you are my age or older, you might remember a 1980s sitcom called "Small Wonder" in which an inventor creates a robot who pretends to be his daughter. Somehow despite the robot clearly talking and moving like a robot, no one outside the family is able to figure out that she's not a real little girl. Here, a boy tries to talk to her and she responds the same way Will might in a similar situation.

Obviously this is an exaggeration and unlike the robot girl on the show, Will doesn't ALWAYS talk in a monotone voice. As I said earlier, it's usually when he is just repeating phrases back to you. Still, if you spend enough time around Will you'll notice that the way he says things and the mannerisms he exhibits are pretty strange.

I shared a video last time of him reading a book. He was reading slowly but I feel like he enunciated clearly. Below is a video I took a few nights ago of him narrating a picture book that has very little words in it. He was excited and kind of laughing but the way he described what he was saying was hard to make out and he's speaking in kind of in a singsongy voice.

When Will is fluctuating between a repetitive monotone and a high-pitched sing song voice, it can be difficult trying to have any kind of meaningful verbal exchange with him. Even asking what he wants for dinner can take several minutes since he tends to either just repeat the question back to us or says something completely unrelated. Having a conversation with Will is basically impossible. He seems to have no desire to keep a steady exchange going with another person which deeply affects our next section....

Social Interaction

Obviously if Will is unwilling or unable to have a conversation with another person, social interaction is going to be difficult. He usually is content to play by himself with his toys. The only activity he really seems to enjoy doing with other kids is playing chase, which requires very little verbal communication and a lot of running (one of Will's favorite things to do even though he's never told me as much since he doesn't use the word "favorite").

If anyone says or does something that Will doesn't like, he usually just shouts "no" or "stop it". If other kids crowd his personal space or try to take one of his toys, he escalates pretty quickly from a forceful "no" to a shove or a hit. Will doesn't seem to have the patience or capacity to explain to anyone what his boundaries are and will instead push, hit, or scream, to keep others away.

Lately I have been trying to secretly make videos of Will to try and capture what he is like on a daily basis. Here's a video of his reaction when he realizes I am once again filming him.

Will sometimes reacts the same way if another kid even looks at him, let alone tries to engage him in conversation. I think Will knows that if someone can't pick up on his verbal attempts to keep them away, he resorts to hitting or pushing. It doesn't happen often but he does the same thing with adults. During one of his sessions with the child psychologist, she was trying to engage him in a particular game. He wasn't interested at all and took a swing at her. I think she must be a trained in some kind of martial arts because she blocked his swing with cat-like reflexes. That or a child psychologist is used to having kids react physically when they are pushed out of their comfort zone.

Clearly Will has very little desire to engage other kids in playing or in conversation and it's going to keep being a problem in any kind of social setting moving forward.

This next video isn't necessarily a conversation, but he has started to show more interest in his baby sister and it's a sweet moment that Ashley captured the other day:

Food

Here is a pretty exhaustive list of what Will is willing to eat / drink: milk (lots of it), pizza, cheez-its, Lucky Charms, one particular type of Granola bar, soft pretzels, macaroni and cheese, grilled cheese, quesadillas, peanut butter and jelly, Eggo waffles, and goldfish. He also likes M&Ms, Oreos, and Kit Kats.

A few things that Will absolutely will NOT eat include: fruit (unless it is pineapple on a Hawaiian pizza), meat (unless it is Canadian bacon on a Hawaiian pizza) and vegetables.

Fortunately for us, Will has never had any trouble meeting any of his growth milestones. If you ever have a chance to pick Will up, you'll also know that he is very solid and well-built. Milk is a huge part of his diet and probably his favorite thing to eat. At one point he tended to eat only white colored foods like milk, yogurt, and string cheese. He's a little less picky about the color of the food but we think texture probably plays a big part of his pickiness.

Right now, Will's pickiness while eating isn't a huge problem but it could potentially be one in the future.  He can't eat only dairy and carbs forever! It certainly adds to our stress at mealtimes because there are only so many things we know he will eat and sometimes he's either not hungry or just won't tell us what he will actually eat.

In summary, I think a lot of the weaknesses I've listed are very clearly in line his diagnosis of ASD. These are also things that hold Will back as far as being able to have meaningful interactions both with other kids and adults as well.