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Seeing Big Behaviors? Take a closer look at autism.

Is your child getting easily frustrated or upset? Have there been days with outbursts, meltdowns, screaming, or crying? Are they even more frequent during this time of staying at home? Why does this happen?  

As parents, we so desperately want to restore peace in our homes that we quickly reach for strategies. Some tools or supports help for a time and they change as the child grows or as the environment changes. During the COVID-19 pandemic, many services or therapies are in flux or delivered virtually. This is distressing for all of us.  

I want to take a moment to draw our attention back from all that’s happening “out there” and the various strategies we may reach for. Let’s take a closer look at the definition of Autism Spectrum Disorder (ASD). Considering how children with ASD might experience the world helps get at the “why” behind some behaviors. It may also reduce your frustration and confusion, building empathy and understanding. 

Autism Defined

ASD is defined as a disorder of communication used for social interaction and a disorder of restricted patterns of behavior such as sensory behaviors or adherence to routines. Children who have ASD show us that they are having trouble with communication and understanding what seems so easy for children with typical communication skills. Children with typical communication skills learn how to interact with family members through facial expressions, gestures and routines even before they fully understand the words people are saying to them. Children with ASD often miss these cues that guide interactions. They may have sensory sensitivities that make it hard to be relaxed and fully attentive to the cues their parents are providing. They often focus deeply on what interests them and what makes sense to them (such as lining up favorite books or watching the motion of toy train wheels). 

Unpacking the Definition

Kids with ASD are doing what works for them. When they are upset, they are letting us know that they don’t understand what is going on. So what do we know about Autism Spectrum Disorder that gives us clues about our children’s behaviors? 

  1. Children with ASD often have difficulty understanding language. They may interpret language literally, not understanding variations of meaning and context. “You can’t go to the park!” may mean to the child that he can never go to the park, instead of not right now because it is raining. Many children can say words but understand them only within a specific routine. They may not fully understand the meanings of words, requiring parents to use short sentences with consistent word choice. In addition, the child with ASD may have difficulty understanding changes in inflection and voice tone. Language is very fluid and changing. This makes it hard to understand language and use it in conversation, especially if you are not getting information from facial expressions.
  1. Children with ASD often understand family life in terms of routines. They become upset when the routines change because events are not what they expected. This is why weekday routines can run smoothly, but Saturday, with less structure, can make the child anxious. This time of staying at home might really be confusing. Routines like bedtime routines can be very useful to gain cooperation as you guide your child through taking a bath, brushing teeth and story time. Less structured days with errands and going out to eat can be stressful for a child to understand. He may need support and preparation to accept the routine changes. 
  1. Children with ASD may have low frustration tolerance. Many children with ASD have difficulty staying calm enough to think rationally when they are upset. The more someone talks – especially in a loud voice – the harder it is to process the information. All children get upset when they can’t do something like swinging on monkey bars, but the child with ASD may get more and more upset without the thoughtful reflection that he will grow and master the task over time. Anxiety heightens this difficulty.
  1. Children with ASD often have sensory sensitivities that interfere with attending to adult requests. Books are filled with stories from people with ASD describing how they feel overwhelmed by physical contact, noises, smells, and some children do not like being touched; others are frightened by common noises like airplanes, vacuum cleaners, and lawn mowers. Many children have trouble following simple directions in stores and malls because of sensory overload. 
  1. Children with ASD often do not understand facial expressions or tone of voice. There is considerable research in ASD on theory of mind that demonstrates the difficulty understanding other people’s perspective. By the time a child is five, most children know that people have varying perspectives. We adjust our actions based on the reactions we expect from people around us. This is not so easy for the child with ASD. Children with ASD may not understand that parents with red faces and stern voices are expressing anger. They find the interaction surprising, interesting, or even amusing. 
  1. Children with ASD are often black and white thinkers. They may be quite rigid in what they expect to happen. The child who understands that the arrival of grandmother means his parents are leaving for the evening may get very upset when dear grandma just comes for a social visit. Rigid thinking can also be seen in interests. Parents talk about intense interests in Thomas the Train, washing machines, sport scores, or tornados. Intense interests can interfere with following simple directives that seem reasonable to parents.

This list is not exhaustive, but it illustrates that social communication is challenging. Your child is doing the best he can with the way he interprets information. He is not testing his parents. He is not in a battle of wills to always get his way. The child is doing what works for him in the family situation. If the child’s behavior is not working for you, the parent, or in the family, it shows there is a problem with communication.  

So, what can we do? Our next post will take up this question in depth. For now, really take some time to take a closer look, noticing when your child struggles most and when he is content or engaged. Gather insight into his experience. This foundational information can strengthen your relationship and inform how you support your child’s understanding. 

Thank you to Mary Powell for this insightful contribution.

Lovin’ Summer? How to prepare for all the fun

Monday was the first day of summer “vacation” in our home. While I’d spent hours upon hours many months ago designing the perfect schedule for our family – robust with inspirational and varied opportunities for my kids – I neglected something, that for my eldest son, is crucial. I forgot to prepare him.

He, like most kids with autism, struggles with transitions. Big or small, almost all take a little extra support from his adult “helpers.” Usually, I do this without thinking. And I guess that’s why I dropped the ball this time; I just wasn’t thinking.

In past summers I have crafted detailed weekly visual schedules, complete with pictures and developing patterns within the schedules since he’s a pattern thinker. As he’s grown and his reading skills emerged, those schedules morphed into more traditional color-coded weekly calendars, but I still create patterns for him. Together we go over these schedules, have lots of talks and, if necessary, whip up a quick Social Story to prepare him for a new camp or class. But this year, beyond updating our iCalendars in the iCloud, I did nothing.

It wasn’t until 11:30 at night that I realized my mistake. I heard the thump of my son’s footsteps on the stairs as he came down. I was frustrated since his bedtime was hours before. He stood before me noticeably anxious. While the words, “Go back to bed,” were forming on my lips, “What are we doing tomorrow?” erupted from my son.

And the light bulb went on. While he’d made it through the day with only mild grumbling and small refusals, my son’s anxiety had been building all day long. Having no idea what the next hour or day held for him, he was unable to relax, couldn’t sleep or enjoy himself.

So we sat down and went through the online calendar together, which is, luckily, color-coded. And I spent my remaining waking hours developing our visual schedules for the summer. He’s referred to his four times today. There has been no grumbling and no refusals. And I’m pretty sure he’ll be able to sleep tonight.

I’m reminded of just how much he relies on these supports but also encouraged to see how far he’s come; from tantrums to grumbles and from meltdowns to negotiations. But best of all is his self-awareness which allows him to ask for what he needs. So that even if I drop the ball, he’ll pick it up and assist.

Things to remember as you transition into summer

  • Use what motivates your child – i.e. color, shapes, characters
  • Take time to create visuals that are meaningful to your child. See our earlier post on Visual Schedules
  • Be aware of your child’s processing ability when creating visual schedules. They may need daily ones broken into hour or half-hour increments. Use pictures if they are not yet reading. Or use both for emerging readers.
  • Display schedules in a space easily accessed by your child.
  • Social Stories are great tools for preparing children for new classes, camps or programs. See our post on Social Stories.
  • Find ways to keep important routines – bedtime, favorite books, breakfast with grandma – so new things are easier to handle.

One Comment

  1. Thanks for the great article. It really hit home for me and my son. As he has gotten older, I have not been as intentional at communicating the schedule. This article was a great reminder to start doing so tonight!

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