Understanding Regression and PDA and Autism: A Parent's Perspective

Navigating the Complex Journey of Regression and PDA and Autism

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Have you ever watched your child suddenly lose skills they once had? One day, they're chatting away, making eye contact, and playing with others. Then, seemingly overnight, these abilities fade away. As a mom to a daughter with autism, PDA, and ADHD, I've been through this heart-wrenching experience, and I know I'm not alone.

Many parents have shared stories with me about their children's developmental regression. When this happens alongside Pathological Demand Avoidance (PDA), also viewed through the more favorable lens of Persistent Drive for Autonomy, it creates a unique set of challenges for families. Today, I want to talk parent-to-parent about understanding regression when it occurs in children with PDA and autism and share some practical approaches that have helped our family navigate this journey.

What Does Regression Look Like?

Regression can feel like the floor has suddenly disappeared beneath you. For my daughter, it happened when she was about four. She was verbose, spoke in lengthy sentences, knew her colors and numbers, and even had a few friends at preschool. Then, over a period of weeks, she stopped speaking almost entirely. Eye contact became rare. She withdrew from her friends and began having intense meltdowns.

A mom in our support group described her son's regression this way: "It was like someone had switched children on us overnight. The skills we had celebrated just months before—gone. The connection we'd built—severed. We were back at square one, but now with the added grief of knowing what we'd lost."

Regression in children with autism can happen at various ages but often occurs between 15-30 months. However, it can also happen later in childhood, especially during times of significant stress or transition. When a child also experiences PDA, these regressions can be even more complex to understand and address.

Understanding the Connection Between Regression and PDA and Autism

Regression and PDA, and autism often intersect in ways that can be confusing for parents. To clarify this relationship, it helps to understand each component:

• Regression refers to a loss of previously acquired skills, which can include language, social skills, play skills, or self-help abilities.

• PDA (Pathological Demand Avoidance or Persistent Drive for Autonomy) involves extreme anxiety-driven avoidance of everyday demands and an intense neurological demand for perceived control.

• Autism encompasses differences in social communication, sensory processing, and patterns of behavior or interests.

  
  

When these three elements combine, they can create what seems like a perfect storm. A child with autism who also has PDA traits may experience more pronounced regression during times when demands increase or when their need for autonomy is challenged.

As Dr. Ruth Fidler explains, "For children with PDA profiles, their anxiety around demands can reach such intense levels that they may appear to lose skills they previously demonstrated, particularly in demanding situations." This helps explain why regression might be more noticeable in certain contexts than others.

My daughter, for example, could still use language when playing alone with her favorite toys but would become non-verbal in situations where demands were placed on her, such as at doctor appointments or family gatherings. Instead of responding with her typical lengthy sentences, in these instances, she would resort to grunting. Understanding this helped us recognize that her skills weren't truly "gone"—they were just inaccessible during high-anxiety moments.

Common Triggers for Regression

For children with PDA and autism, several factors can trigger regression:

1. Increased social or academic demands: Starting school or moving to a more demanding grade level can overwhelm a child's coping mechanisms.

2. Sensory overload: As environments become more complex or stimulating, children may withdraw to protect themselves from overwhelm.

3. Changes in routine: Even positive changes like holidays or vacations can disrupt the predictability that many children with autism rely on.

4. Emotional stress: Family changes, conflicts, or other emotional situations can deplete a child's resources for managing other aspects of life.

5. Puberty and hormonal changes: The onset of puberty can bring physical, emotional, and social changes that may trigger regression.

   
   

For children who have PDA, there's an additional layer—the increase in expectations that naturally comes with growing older. As children age, society places more demands on them for independence, social conformity, and self-management. For a child with Pathological Demand Avoidance/Persistent Drive for Autonomy, these increasing expectations can feel suffocating rather than empowering.

A friend whose son has PDA and autism told me, "Every birthday seemed to come with a new set of expectations he wasn't ready for. People would say things like 'big boys do this' or 'now that you're seven, you should be able to...' Each new expectation felt like another brick in a wall that was closing in on him."

Distinguishing Regression from PDA-Related Avoidance

One of the challenges for parents and professionals is distinguishing between true developmental regression and the avoidance behaviors that are characteristic of PDA. Here are some differences that might help:

• Regression typically affects multiple areas of development simultaneously and persists across all or most situations.

• PDA-related avoidance may look like a loss of skills but is more context-dependent and strategically employed to avoid demands.

  
  

My daughter's occupational therapist helped me understand this distinction. She explained that if my daughter could demonstrate a skill in certain comfortable settings but not in others, it was likely demand avoidance rather than true regression. This was actually somewhat reassuring—it meant the skills were still there, just hidden behind a wall of anxiety.

However, it's also possible for both to occur simultaneously. The anxiety and stress associated with PDA can be so intense that it leads to actual regression in skills, creating a complex situation that requires thoughtful support.

Supporting Your Child Through Regression

When your child is experiencing regression alongside PDA and autism, traditional approaches often fall short. Here are some strategies that have helped our family and others I've connected with:

1. Reduce Demands Temporarily

When regression occurs, it's often a sign that your child is overwhelmed. Temporarily reducing demands can give them the space to regain their footing. This doesn't mean eliminating all expectations but rather focusing on what's truly essential.

For my daughter, we created what we called "sanctuary days," where we stripped back to the bare minimum of demands and focused on connection and comfort. These days gave her nervous system a chance to reset.

2. Build in Autonomy

For children with a persistent drive for autonomy, having choice and control is crucial for reducing anxiety. Even during regression, find ways to offer appropriate choices:

"Would you like to wear the red shirt or the blue shirt?" "Should we practice words before or after snack?" "Do you want to sit on the chair or the floor for this activity?"

These simple choices honor their need for autonomy while still moving forward with necessary activities.

3. Use Indirect Communication

Direct demands can trigger anxiety in children with PDA. During regression, this sensitivity is often heightened. Try using more indirect approaches:

• Talk about activities in the third person: "I wonder if the stuffed animals want to practice counting today?"

• Use declarative language instead of instructions: "Wow, those hands look like they have food on them" rather than "Go wash your hands."

• Frame activities as collaborative: "Let's figure out how to get dressed together" rather than "Put on your clothes."

  
  

4. Prioritize Emotional Connection

Regression is scary for both parents and children. Your child needs to know you're still there for them, even as skills seem to disappear. Prioritize activities that build connection without demands—snuggling while reading books, gentle physical play, or simply being present together.

A parent in my support group shared, "When my son was going through regression, I felt like I needed to be working on skills constantly to get him back on track. But what actually helped was when I took the pressure off both of us and just focused on enjoying him exactly as he was in that moment."

5. Document Patterns and Triggers

Keep a simple journal noting when regression seems most pronounced and any potential triggers. Look for patterns related to:

• Time of day

• Specific environments

• Particular people

• Types of demands

• Physical factors (hunger, tiredness, illness)

  
  

This information can help you understand your child's unique regression pattern and develop more targeted supports.

When to Seek Professional Support

While regression can be a normal part of the developmental journey for some children with autism and PDA, certain signs suggest it's time to consult with professionals:

• Regression that continues for more than a few weeks

• Loss of multiple skills across different developmental areas

• Physical symptoms like loss of balance, coordination issues, or seizures

• Signs of physical pain or discomfort

• Severe sleep disturbances

• Self-injurious behaviors

Our developmental pediatrician emphasized that regression should always be evaluated medically to rule out underlying health conditions that might be contributing to the changes in behavior and skills.

Finding Your Path Forward

The journey through regression with a child who has PDA and autism can feel lonely and frightening. What helped me most was connecting with other parents who understood—who didn't judge when my daughter lost skills or when my parenting looked different from the norm.

Remember that regression, while challenging, is often not permanent. With the right support and understanding, many children regain lost skills and continue developing, albeit sometimes along a different timeline or pathway than expected.

A therapist once told me something that became my mantra during difficult periods: "Development isn't linear for any child, and it's especially not linear for children with neurodevelopmental differences. Trust that your child is doing the best they can with the resources they have available right now."

Next Steps

Parenting a child with autism and PDA is both challenging and rewarding. If you're looking for more practical strategies and insights, I've compiled extensive research and personal experience in my book, "A Practical Parent's Guide to PDA and Autism."  This resource provides concrete approaches tailored specifically to parents and caregivers of children who experience both autism and PDA.

As a parent juggling therapy appointments, IEP meetings, and the daily challenges of raising a child with PDA, I know you barely have time to sit down, let alone read a book. That's exactly why I've made "A Practical Parent's Guide to PDA and Autism" available as an audiobook you can listen to during school drop-offs, while making dinner, or during those precious few minutes alone in the car. Transform your "lost time" into learning time by grabbing the audiobook here: US, UK, Australia, Canada, France, and Germany.

I wrote this book because I needed it myself and couldn't find anything like it. It offers practical, parent-to-parent advice based on both research and my own real-life experience raising a child with PDA, with specific chapters dedicated to understanding and preventing burnout. The strategies I share have helped thousands of families reduce stress and build more harmonious relationships with their neurodivergent children. As parents walking this path, we need real solutions from someone who truly understands—not just theory, but practical approaches that work in everyday life with our wonderful, complex children.

Your Turn

Have you experienced regression in your child with PDA and autism? What strategies have helped your family navigate these challenging periods? What questions do you have about supporting your child through regression while honoring their need for autonomy?

Share your thoughts in the comments below. Your experiences might be exactly what another parent needs to hear today.

References:

1. American Academy of Pediatrics. (2022). Regression in children with autism spectrum disorder. Pediatrics, 149(4), e2021054272.

2. Fidler, R., & Christie, P. (2019). Understanding Pathological Demand Avoidance (PDA) in the context of autism spectrum disorders. Good Autism Practice, 20(2), 5-12.

3. Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., & Baird, G. (2018). Pathological Demand Avoidance: symptoms but not a syndrome. The Lancet Child & Adolescent Health, 2(6), 455-464.

4. Newson, E., Le Maréchal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88(7), 595-600.

5. O'Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014). Pathological demand avoidance: Exploring the behavioural profile. Autism, 18(5), 538-544.