Understanding Anxiety in Young Autistic Children

Anxiety is a common human experience, but for young autistic children, it can present unique challenges that are often misunderstood. 

While many people associate autism intervention with addressing social communication or repetitive behaviors, the internal world of an autistic child, especially their anxiety, can be a significant barrier to their well-being and development. How can we better recognize and support a young child who is struggling with anxiety that they cannot express in words? 

In a recent episode of the Autism Weekly podcast, host Jeff Skibitsky spoke with Dr. Amy Keefer, a board-certified psychologist at Kennedy Krieger's Center for Autism Services, Science and Innovation (CASI). Dr. Keefer shared profound insights into the intersection of autism and anxiety, the importance of early intervention, and an innovative new approach called the Dinosaur Clinical Trial. This conversation sheds light on why we must prioritize mental health support from a very young age. 

The Overlooked Presence of Anxiety in Early Childhood 

For years, research and clinical practice for autism have focused on school-aged children and teenagers when it comes to anxiety. However, Dr. Keefer's work highlights a critical gap: anxiety often begins much earlier. Research shows that the rates of anxiety in autistic children under the age of seven are double what is seen in their non-autistic peers. Despite this, there are very few evidence-based treatments designed for the four-to-six-year-old age group. 

This lack of focus on early childhood anxiety means that many children's struggles are either misinterpreted or missed completely. Parents and even some clinicians may attribute signs of anxiety to the child's autism, not recognizing it as a separate, treatable condition. 

How Anxiety Looks Different in Autistic Children 

One of the biggest hurdles in providing support is identifying anxiety in the first place. Young children, in general, have difficulty verbalizing their internal feelings. For young autistic children, this challenge can be even greater. 

Dr. Keefer explains that anxiety in this population often doesn't look like the classic "worry" we associate with the term. Instead, it can manifest behaviorally. You might see: 

• An increase in tantrums or meltdowns. 

• A rise in repetitive behaviors or mannerisms. 

• Heightened sensory sensitivities. 

• Refusal to participate in certain activities. 

• Physical signs like clinging, shaking, or hiding. 

These behaviors can easily be mislabeled as "just autism" or defiance. However, they are often signals that the child is experiencing overwhelming fear or stress. The key is to look at the context. Are these behaviors triggered by specific situations like separating from a parent, entering a social setting, or encountering a specific fear (like dogs or loud noises)? If so, anxiety may be the underlying cause. 

Differentiating Autism from Anxiety 

A crucial step for parents and providers is learning to distinguish between traits of autism and signs of anxiety. 

The approach to supporting each is very different. As Dr. Keefer points out, we approach autism by building skills and providing accommodations. For anxiety, the goal is often to help the child gently face their fears. 

To tell the difference, consider the triggers. 

For example, if a child resists going to a store because of the bright lights and loud sounds, that points to sensory sensitivities related to their autism. The solution is support and accommodation, like providing noise-canceling headphones. 

However, if a child resists going to the store because they are afraid of being separated from a parent in the crowd, that suggests separation anxiety. The approach here involves building coping skills and gradually increasing their comfort with separation. 

It’s a complex distinction, and Dr. Keefer emphasizes that parents shouldn't have to figure this out alone. Seeking guidance from a professional with dual expertise in autism and mental health can be invaluable. 

Introducing the Dinosaur Clinical Trial: A New Hope for Early Intervention 

Recognizing the urgent need for early intervention for autism and anxiety, Dr. Keefer and her colleagues at Kennedy Krieger developed a novel treatment program for four-to-six-year-olds: the Dinosaur Clinical Trial. 

This parent-focused intervention is based on cognitive behavioral therapy (CBT), the gold standard for anxiety treatment, but it’s been carefully adapted for young, autistic children. 

Key Features of the Dinosaur Program: 

• Parent-Focused: The program empowers parents to become their child’s "anxiety coach." It recognizes that these young kids need their caregivers to guide them through new skills. 

• Visually Supported and Engaging: Using a fun dinosaur theme, storybooks, and movement activities, the program teaches concepts in a way that appeals to young children and helps them stay engaged. 

• Skill-Building for Children: Kids learn to recognize their own feelings of anxiety, what Dr. Keefer calls their "physical cues," and are taught simple coping strategies, like relaxation skills, to manage those feelings. 

• Virtual and Accessible: Originally designed for in-person delivery, the program pivoted to a virtual format during the pandemic. This change has made the treatment more accessible to families, removing the burden of travel and allowing for wider participation. The trial is now expanding to include families across the Eastern Seaboard. 

• Focus on Facing Fears: A core component of CBT is helping individuals gradually and safely confront the things that scare them. The dinosaur program provides parents with the tools to guide their children through this process in a supportive way. 

This clinical trial is more than just research; it's a direct line to support for families who have had few options until now. 

By participating, families not only receive help for their child but also contribute to building a better future for countless others. 

Actionable Advice for Families and Individuals  

The conversation with Dr. Keefer provided practical guidance for supporting autistic children experiencing anxiety. 

1. Don't Ignore the Signs: If you suspect your child is struggling with anxiety, don't push it aside. Trust your instincts. Anxiety is not something children simply "grow out of," and early support can prevent more significant challenges later on. 
2. Speak Up and Seek Help: Talk to your child’s providers; their pediatrician, therapist, or school team. Advocate for your child’s mental health needs. It can be challenging to find professionals with dual expertise in autism and anxiety, but they are out there. 
3. Become a Detective: Pay attention to what triggers your child’s challenging behaviors. Understanding the "why" behind the behavior is the first step toward finding the right solution. Is it a sensory issue, or is it fear-based? 
4. Increase Predictability: Anxiety often stems from a fear of the unknown. Using tools like visual schedules and social stories can help your child anticipate what’s coming next, which can significantly reduce their overall anxiety levels. 
5. Empower, Don't Just Protect: While our first instinct is to shield our children from distress, always avoiding anxiety-provoking situations can reinforce the fear. The goal is to find a balance between providing support and gently encouraging your child to face their fears with you by their side. 

For autistic individuals, recognizing how anxiety may have impacted your own childhood can be validating. 

Understanding that certain behaviors may have been expressions of fear, not defiance, can reframe past experiences and promote self-compassion. 

Listen to the Full Episode 

To learn more about the Dinosaur Clinical Trial and gain deeper insights into supporting young autistic children, listen to the full Autism Weekly podcast episode.