The Silent Struggles: Nonverbal Autism and Crying

If there is anything that my short time as a mother has taught me, is that children do a lot of crying. As babies, crying is a primary way that the children communicate that something is wrong. And over time, we as parents learn to distinguish a hungry cry from a diaper cry from a sleepy cry from a painful cry, and the list goes on and on.

The expectation based on typical childhood development is that over time, reliance on crying on the part of the child and guesswork on the part of the parent decreases because the child becomes able to express their needs verbally. But having a nonverbal child with developmental disabilities can make it challenging to identify his or her needs, leading to frustration on the part of the child and anxiety on the part of the parent.

It's an all-too-familiar scenario: Becca is happily playing and singing and dancing, and suddenly is crying for what seems to be no reason at all. And we start the entire checklist of possible reasons - check that her clothes aren't too scratchy, or her socks aren't too tight, or that she isn't too hot or too cold, that she hasn't scratched or bitten herself. We look at her face to see if she seems to be sleepy, or if her diaper needs to be changed, or if there is any reason we can decipher why she may be uncomfortable. We turn down the lights, turn on her sensory calming lights, turn on her diffuser with her oils, turn on her program on YouTube. We observe her behavior - is she grabbing or tugging her ears? Has she been eating and drinking normally? Might this warrant a trip to urgent care - and if it does, will we be able to give the doctors an idea of what might be wrong to give them a starting point?

Thankfully, as Becca has gotten older she is able to communicate many of her needs without the need to cry for our attention. She brings items to us that need our intervention, she might place our hands on her body if she is experiencing some pain, she gives us the remote if her YouTube goes to commercial. And now that she is learning her AAC tablet, she has started using it to make basic requests.

But even with all of these, Becca will use sounds and gestures to communicate with us when her newfound methods do not work. And it isn't always easy to know what she wants. And if we can't figure it out, she will often resort to crying as a means to communicate that something is not quite right.

For a nonverbal child, crying can indicate several things, including frustration, discomfort, or the need for help with something specific. Crying is a primary means of communication for children when they can't express their needs or feelings verbally. The first step in supporting our children when we can't figure out what might be bothering them, is to remain calm while we try to assess the situation. Freaking out or becoming frustrated ourselves only makes the child anxious and usually makes the crying worse.

We should also take the time to understand what triggers crying for our kiddos. This might differ from child to child, and may take a little detective work. For Becca, we typically see the following reasons for her crying:

1. She's sleepy. As with babies, when Becca is ready to sleep or nap, she starts to cry. Sometimes she's fighting sleep (Becca has serious FOMO); other times, she is so sleepy that it is disturbing her peace. It's the equivalent of being so sleep-deprived that you can barely function. Her response is to cry. I'm not sure she will ever grow out of that fully. I'm grown and I love my sleep, but sometimes I still fight it.
   

2. She is in pain or discomfort. This one is tricky because it isn't predictable as is the case with "sleep crying". However, it also doesn't sound the same. Becca's crying when she is in pain is much louder and more manic - she might tug at her own skin, hit her skin where it hurts, or press my hands onto her body while she screams and squirms. This type of crying requires a lot of patience - she is upset and frustrated because she is in pain and I have to address her calmly so that I can with a clear head figure out what is bothering her. And while with the sleepy crying, I can encourage that she sleep, make the conditions in her room conducive to sound sleeping, and allow her to cry a little bit (there isn't much I can do to address it in the moment), with the pain crying I have to try my best to figure out in the moment what is bothering her so that I can address it. And once it's addressed, it will usually stop the crying.
   

3. She is overwhelmed with the demands being placed on her. Sometimes, when Becca is hard at work, completing a fine motor or other task that requires her concentration, she will try to give up on the task early and signal that I complete the task for her. When I encourage her to do it, and tell her that I know she can, she sometimes gets frustrated and starts to cry. In those moments, I reassure her, help her in the more immediate, then withdraw so that she can complete the task. And - here is the most important part - I celebrate her once she completes the task so that she feels happy, proud of herself, and confident that she can complete the task the next time around.
   

4. She is feeling sick. This one is similar to being in pain or discomfort, but the cry is slightly different and might trigger us to search differently. This cry is more like whining, and it comes and goes. And it is usually accompanied by some other physical symptoms - either coughing, hot skin (with or without fever), or runny nose. Loss of apetite might indicate a sore throat, tugging at the ear might indicate an ear or sinus infection, overall lethargy could indicate COVID or the flu. If she winds up with pinkeye, we usually suspect strep throat. But before any of those physical symptoms manifest, it may start with a whiny cry and overall fatigue.
   

5. Sensory overload. She is so excited and has had so much sensory input - music, food, dancing, jumping, slime, Play-Doh, lights, noise - that she has a sensory meltdown. This cry can be inconsolable with thrashing, swinging, turning, and what appears to be very little physical control of the body. It can be dangerous if not handled properly. The best way to deal with a meltdown is to try to avoid them in the first place, if possible. Offer breaks between activities where your kiddos can calm themselves so they do not become overstimulated. However, if you and a child in your care find yourselves in the middle of a meltdown, the important thing is the safety of the child. Decrease sensory input to the extent possible. Turn off lights, use weighted items or other items that calm the child down, and let them cry it out while monitoring them for safety. Becca rarely has meltdowns, but when she does, we turn off all the lights, turn on her sensory lights (looks like stars in her bedroom) and very light, soothing music. We close the door and allow her to go through it. It usually passes in about 15 minutes or so. It is important not to overwhelm the child - the first instinct of the adults is to do everything to calm the child down, but that is overwhelming and makes the meltdown worse. If Becca begins to melt down in a space with other adults, I instruct the other adults to leave her alone and to let me handle it. It isn't that I'm trying to be a hero or that I won't accept help, it's that as well-intentioned as people are, I know that their intervention will not only not have the desired effect, it will have the opposite effect.
   

6. She is disappointed because I said "no" or corrected her. As is the case with most children, she will stop crying once she gets over her disappointment or once she realizes that no amount of crying is going to get me to change my mind. It is important to stand our ground here. As much as I don't like to hear Becca crying, giving in to her crying is going to teach her that her protests will get her anything she wants or that my "no" is not to be taken seriously. Becca's Autism is not carte blanche to do whatever she wants when she wants to do it. She, like all Autistic people, is capable of learning and it is my job to teach her.

A crying child can be a source of anxiety for parents, especially if it happens in a public space with other adults who are tossing judging looks and making comments about the child's behavior or our ability to parent our children. I have learned to be unapologetic about doing what I have to do for the emotional well-being of my daughter. I have at times had to sit down on the floor in the department store to help her through a challenging moment, I have had to ask restaurants to bring me a cup with ice for her to regulate herself, I have had to walk out of public places to deal with her meltdown and come back when she was emotionally ready. But what I refuse to do is to keep her away from public places in fear that she might cry. Exposure has been extremely helpful for Becca, and she does so much better in new environments now than she used to. And as she continues to grow, we will continue to see progress.

If you're dealing with inexplicable crying, and it's a concern, and you can't figure it out, do feel free to consult with a professional who can help. But even in that situation, be sure to keep calm and think level-headedly as you go through the process. Overwhelming as it can be - who likes to hear their child cry, after all - crying is an important tool in your nonverbal child's toolkit. Let's learn to understand it as we continue to champion our children through a world that isn't quite set up for them.