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The Why, What, and How of Dealing with Anxiety in Autism

February 26, 2021
By Sarah Chauvin and Penelope Khuri

The Why, What, and How of Dealing with Anxiety in Autism

The Texas Winter Storm of 2021. It was the coldest day of February in over 120 years. We had no heat, no power, and our electronics were starting to lose their charge. It would be 36 hours and another 24 of intermittent outages before the power and heat stabilized, and still another 48 before the freeze was done. Somewhere around the halfway point, with indoor temperatures dipping as low as 45 degrees, I sat in the dark filled with worry about keeping my family warm. I couldn’t help but think, “this is anxiety.” I felt it, which meant my son Noah, felt it too.

Noah is thirteen and on the autism spectrum. If you asked him what his fears are, he would list, in no particular order: fire drills, crazy arcade games, extreme temperatures, and dark rooms with unexpected noises. The ice storm that kept us extremely cold and in the dark for three-plus days created the prime elements for significant anxiety for my son.

A few weeks before Texas was blindsided by this epic winter storm, Westview EDU hosted Dr. Sarah Mire, an Associate Professor at the University of Houston’s School of Psychology doctoral program and Associate Chair for the Psychological, Health, and Learning Sciences Department. Dr. Mire presented her “Parent Primer to Understanding Anxiety in Autism and Helping Kids on the Spectrum.” 

If you are reading this blog, it is a safe bet that you, too, are a parent of a child with autism. According to Dr. Mire, anxiety in autism is the most common mental health problem in children and adolescents with autism.  Some research suggests that up to 80% of kids diagnosed with autism spectrum disorder may also meet the criteria for an anxiety disorder. The risk for elevated anxiety increases as these children get older. IQ matters too. Kids with average or higher IQ scores often have higher anxiety than peers with autism who have lower IQ scores.

So, my sweet Noah, age thirteen, with a high average IQ and being diagnosed on the autism spectrum, was what Dr. Mire described as “meeting the criteria for the elevated risk of anxiety.”

The truth is, our family did okay during the freeze. We were lucky. No pipes froze. Our home wasn’t damaged. Aside from the minor inconvenience of being left in the chilly dark for quite some time and boiling water for a week, we did okay. The most challenging part of the experience was managing my son’s anxiety. As many residents of the great state of Texas have shifted focus to how to better prepare for the next time a major disruption occurs, it may be helpful for us to learn some of the information and strategies that Dr. Mire suggested in her Westview EDU presentation.

What Dr. Mire had to say about anxiety - our response to it, what is proven to help, and how to implement it in our own homes - may be just the thing to pack away in our emergency preparedness kit, so we can go from being just okay to crushing it the next time an unforeseen event is laid in our path.  

Let’s start with the WHY. Why does my child with autism suffer from anxiety?

Dr. Mire suggested several theories as to why up to 80% of children on the autism spectrum also suffer from some form of anxiety. These reasons include:

- Kids with autism recognize their differences from peers.

- They have heightened sensory responsivity, which can be disconcerting.

- Interpreting something as a “threat” when it may not be a real threat.

- They often have negative expectations and beliefs and tend to self-blame.

- Kids may have automatic negative thoughts.

- Kids with autism often have an intolerance of uncertainty, heightening anxiety and laying a foundation for anxious responses.

Anxiety happens. WHAT does it look like? 
The three F’s of Anxiety: Fight, Flight, or Freeze (No Pun Intended)

According to Dr. Mire, anxiety is adaptive and necessary for survival. As humans, we all experience it in some form. When we interpret something as dangerous, our body kicks into motion physiological responses, autonomic nervous system responses, and life-preservation responses. Something must be done to keep us safe. In understanding anxiety, we also see that it exists on a continuum, meaning it can seem similar from person to person, but individual extremes can be very different. Dr. Mire states that research shows that most people react to a threat by either fighting, fleeing (running in the opposite direction), or freezing.

Dr. Mire notes that anxiety is multi-dimensional; it can affect physiology, thinking patterns, emotions, and behavior. High negative emotions combined with high physiological hyperarousal results in anxiety. Dr. Mire emphasizes that self-regulation is a critical skill.  Challenges in self-regulating one’s body, thoughts, and behavior can lead to other things going awry. Dysregulation of emotion is common to both anxiety and autism. The good news is that new thought patterns or replacement thoughts can be learned, which can positively influence emotions, thereby decreasing anxiety.

During the winter storm, I was spurred into action. Dr. Mire would call this a “fight” response to anxiety. I gathered blankets and flashlights, checked and double-checked dripping faucets, and entertained the Wi-Fi-less kids with endless games of Spot-It by candlelight.

Noah’s anxiety was different and more dysregulated. More than likely, it stems from what Dr. Mire describes as “an intolerance of uncertainty.” When we continually interpret something as a threat (i.e., the anticipation of the lights going out), we experience anxiety as a problem of over-reactivity. Alarm bells are continually going off and start to create life interference based on how we interpret things. This is how Noah’s anxiety manifested during the freeze.

So, WHAT can we do? If anxiety is our bodies’ natural response for safety during crisis, how do we combat it when things get out of control?

Dr. Mire states that the most effective non-medication treatment approach for anxiety in autism is Cognitive Behavioral Therapy (CBT). It sounds technical, but basically, it is learning your child’s “before” and “after” when it comes to anxiety. 

First, start with the “before.” What tends to trigger your child’s anxious response? How does the anxiety manifest itself? Then, use this information to minimize the anxiety response and set your child up for self-regulation success. Next, increase predictability. Give transition warnings, offer explanations – give your child the chance to take control of the situation themselves. The goal is for your child to learn self-regulation without any prompting from you. 

Using the example of Noah during the recent winter storm, his anxiety was triggered by the unexpected loss of power. He vacillated between anger and frustration and even tears. As the days went on, it was helpful to continually remind him that we could lose/regain power at any moment and to prepare for the uncertainty. 

Next, Dr. Mire focuses on the “after” – How does your child calm down? She suggests using this information to identify ways of teaching self-calming strategies to your child. For example, Noah uses physical movement to blow off some steam, so we bundled up and took a snowy walk around the block. This seemed to help him better process what was happening and accept that things were not just happening to him, and the outcome was out of his control. Dr. Mire gave other examples of ways children can reset and begin to self-regulate - music, physical touch, talking, or even a preferred toy are just some examples. 

Knowing your child’s “before” and “after” will help you approach the following strategies more effectively.

HOW can your child learn to understand his or her anxiety: 

Dr. Mire believes that a combination of first explaining followed by modeling behavior is the best way to teach your child how to combat anxiety. It is very common for children to be able to pick up on their parents’ anxiety and responses. As parents, we can model how to cope with stressful situations or thoughts. Deep breathing is just one way to reduce the physical effects of anxiety. There are many multi-sensory calming options, but the most important thing is to find what is most calming for your child.  

Noah is most often calmed by logic, routine, and familiarity. On the mornings we woke without power, we made a habit of going into Noah’s room and opening wide the window blinds to let as much natural light in as possible. Being in his room away from the darker spaces in our home surrounded by his drawings and books helped Noah reset and settle into our days. 

HOW as a parent can you support your child during periods of anxiety?  
Parental Support = Practice and Praise

Dr. Mire suggests practicing together before strategies are needed. Don’t wait until your child is anxious to work on these. Help them become accustomed to the prompts. Model use of the same strategies, and let them see you doing it. Practice strategies while doing things that make them anxious, gradually exposing them to the situation that causes anxiety. As with any learning, self-regulation is an ongoing process. Praise attempts to use strategies, even if it “doesn’t work” that time. Problem-solve for next time. And do not forget to give yourself a pat on the back, too. You are working hard, and this is not easy.

The winter storm gave our family multiple days of practice calming everyone’s anxieties about the weather and the cold and the electricity. Noah was pretty good at praising himself. On the third afternoon, as the lights flickered off, he came down from his room and said, “Mom, I think I’m really getting the hang of this.” And, as any good mom would, I replied, “You sure are Champ!” 

When it comes to the why, what’s, and how’s of dealing with anxiety in children with autism, it is clear that there are proven strategies that improve outcomes when learned and put into practice consistently. However, if your child’s anxiety is escalating or interfering with daily life, Dr. Mire encourages families not to be afraid to seek outside help. Find a provider with experience with autism and evidence-based approaches that a family can integrate into anxiety treatment. 

For more information on Dr. Mire’s Westview EDU presentation, Dealing with Anxiety: A Parent’s Primer to Understanding Anxiety in Autism and Helping Kids on the Spectrum, you can access Dr. Mire’s presentation slide deck here. Thank you to Dr. Mire for her generosity in sharing her knowledge and expertise with our community. 

If you are looking for a cognitive behavioral therapy provider, please contact Penelope Khuri, Marketing Coordinator at The Westview School, for our recommended list for local providers. 

Westview EDU is a monthly education series provided by The Westview School for parents and caregivers of children with autism spectrum disorder. Westview EDU sessions are open to the community and are held virtually via ZOOM. For more information on the upcoming sessions and how to RSVP, please visit our website.

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