Curious about Autism?

Parents of children with CHD don’t all start in the same place when it comes to autism—but many share a similar sense that something doesn’t quite add up.

Some parents quietly wonder why their child is developing so differently.

Some worry about autism but hesitate to say it out loud.

Others feel confused by behaviors that don’t fit clear explanations.

Some have been told “it’s not autism,” but still have lingering concerns.

And some feel increasingly certain—and want clarity so they can move forward.

Wherever you are in that process, your questions matter. Maybe you’ve noticed:

• Social interactions feel harder than expected

• Your child really needs routines and struggles with change

• Sensory sensitivities (noise, textures, crowds) are intense

• Communication feels one-sided or confusing at times

• Meltdowns, shutdowns, or overwhelm happen more than expected

• Typical therapy approaches are not a good working

Why Autism Can Be More Complex in CHD

Children with CHD are at higher risk for neurodevelopmental differences, including autism spectrum disorder (ASD).

This is because:

• The heart and brain develop together early in pregnancy

• Some children have differences in brain development or connectivity

• Genetic factors can affect both the heart and brain simultaneously

But here’s what makes this especially important for parents to understand: In CHD, developmental profiles are often uneven or “scattered.” This means a child may:

• Be very verbal but struggle socially

• Be bright academically but rigid or inflexible

• Want friends but not know how to maintain them

This can make autism harder to recognize—or easier to miss.

What Does Autism Actually Look Like?

Autism is a spectrum. No two children (or adults) look the same. At its core, autism involves patterns in two areas:

1. Social Communication Differences

You might notice:

• Difficulty maintaining friendships or back-and-forth conversation

• Trouble reading social cues or understanding others’ perspectives

• Preference for being alone—or interacting on their own terms

• Conversations that revolve around specific interests

2. Inflexibility, Sensory, or Behavioral Patterns

You might notice:

• Strong need for routines and predictability

• Big reactions to small changes or transitions

• Highly focused or intense interests

• Sensory sensitivities (sound, touch, textures)

• Repetitive behaviors or movements

These patterns are not “behavior problems.” They reflect how your child’s brain processes the world, and the unique ways that they engage with people and their physical world.

Why Autism Can Be Missed (or Misunderstood) in CHD

Many children with CHD don’t follow a straightforward developmental path. Some challenges show up early (speech delays, sensory sensitivities OR emerge later (social struggles, rigidity, anxiety) as expectations increase.

In addition:

• Symptoms of autism can overlap with ADHD, anxiety, or language disorders

• Some children “hold it together” at school and fall apart at home (i.e., masking) so they don’t “look” the same across settings

• Bright children with mild autism may mask or compensate for years

This is why families are sometimes told:

• “It’s ADHD”

• “It’s anxiety”

• “Let’s wait and see”

…but something still doesn’t feel fully explained. And often—they’re right to question it. Teasing this apart is complex and overlap across neurodevelopmental diagnoses is common.

The Big Question: Why Does a Diagnosis Matter?

This is something many parents wrestle with. If your child is doing well, a diagnosis may not feel necessary. Or maybe your child is already in multiple therapies.

But if your child is struggling—even subtly—a diagnosis can help:

• Explain behaviors that don’t make sense on the surface

• Guide the right supports at school and home or therapies

• Reduce frustration for both you and your child

• Prevent misunderstanding or mismatched expectations (from family members, teachers, siblings, peers, and more)

Most importantly, it helps you understand your child’s unique profile of strengths and needs.

What About Early Signs?

Some children show early signs, such as:

• Limited eye contact or gestures

• Delayed or unusual communication

• Reduced interest in social interaction

• Struggle to connect with peers and prefer to be alone

Others develop early skills as expected with no clear early signs, but then they plateau or even struggle as social demands increase. You don’t need to wait for certainty. If something feels off, it’s worth exploring.

What Parents of Children with CHD Should Do

1. Trust your instincts

You know your child better than anyone.

2. Don’t rely on “wait and see” alone

Children with CHD are a higher-risk group. Monitoring over time is essential.

3. Understand that overlap is the rule, not the exception

Autism, ADHD, anxiety, and learning differences often co-occur. But interventions for each are different.

4. Consider a comprehensive neurodevelopmental evaluation when needed. Make sure this is with a professional who has expertise with autism. Screenings and brief checklists are typically not sufficient. They will also miss an opportunity to explain how different systems (learning, social, emotional) interact.

A full evaluation connects the dots and guides next steps.

5. Act early—but remember it’s never “too late”

Early intervention is powerful, but support at any age can make a meaningful difference.

A Final Thought for CHD Parents

Children with CHD often do things in their own time—and in their own way.

Some are incredibly insightful, creative, and deeply empathetic. At the same time, they may struggle in ways that aren’t always visible to others.

If your child experiences the world differently, your role is not to “fix” that. It’s to understand it.

And when you understand it—you can support them in ways that truly fit.