If you are a parent of a child who frequently refuses, avoids, becomes inflexible, melts down, or seems unable to do things that you know they are capable of doing, you have probably spent a lot of time trying to figure out why.

 

Addressing behavioral challenges has always been a particular interest of mine. I wonder about physiological factors, personality, family dynamics, and environmental considerations. I am interested in understanding not only why a child is struggling but also what we can do to help.

 

Maybe you’ve been told it is a sensory issue or an executive functioning challenge. Perhaps you’ve been told it’s due to autism, ADHD, or another developmental disorder. And certainly, developmental differences can contribute to why someone is inflexible or avoidant.

 

However, some families experience particularly significant challenges with their child’s willingness to be flexible and participate in everyday activities. Parents describe children who resist even when doing so goes against their own interests. Some of these children have been receiving various therapies for years, yet the refusal and avoidance continue.

 

I believe these children need a particular type of support. I don’t have a cure-all or a tried-and-true strategy that works for everyone, but I do think we can look at their needs systematically and help them become more flexible, make better decisions, and enjoy more parts of life.

 

It takes careful observation, a willingness to make changes, and an understanding of the small shifts that occur throughout the process. Sometimes a small change in how we approach a child can make a significant difference. Other times, something that worked beautifully yesterday doesn’t work at all today. We have to be willing to recognize those changes and adjust our approach.

 

It also requires both therapists and parents to avoid becoming overly committed to one explanation or therapeutic approach.

 

For instance, many families bring their children to me for sensory integration therapy. Sensory integration therapy can be effective and powerful, but the child also needs to participate and eventually use the skills and strategies they’re developing outside of therapy.

 

We can have excellent research supporting an intervention and years of clinical experience using it, but if we can’t get past that wall of refusal, we may not see the functional improvements we’re hoping for.

 

This is what I’m referring to when I talk about needing a multisystem approach. Sometimes we have to combine sensory integration, executive functioning, motor development, emotional regulation, cognitive flexibility, and behavioral approaches to help a child move forward.

 

One of the things I love about occupational therapy is that we have a broad knowledge base that allows us to consider many of these different areas. We can look at the child, the task, the environment, and the interactions taking place, then adjust our thinking based on what we’re observing.

 

Sometimes people are surprised that I address behavior as part of my occupational therapy practice. But when I listen to parents describe what they’re experiencing, I know that behavior and participation are often central to their concerns. They want their children to cooperate, develop skills, become more independent, and have healthy relationships.

 

I can’t consciously recommend that a parent use a particular sensory strategy, knowing full well that their child is likely to refuse to participate in it. I also know that the answer isn’t always to stop offering the tool or remove the expectation, because that can sometimes make things more difficult over time. What we need is a carefully thought-out plan where we discuss how to approach the situation and address both the child’s sensory needs and the behavioral challenges that may be getting in the way. Sometimes that means adjusting our expectations, sometimes it means changing our approach, and sometimes it means gradually helping the child become more willing and able to participate.

 

I also believe in having honest conversations about behavior and what it takes to make meaningful changes. Addressing challenging behavior isn’t always fun. Sometimes it’s not fun at all! There can be frustration, setbacks, and moments when everyone involved feels exhausted. Sometimes addressing behavior can really distort your sense of whether you’re “getting it right.” And I am here to tell you that you are not to blame for your child’s behavioral challenges. However, what you and the other adults in your child’s life do or don’t do can influence whether those challenges improve or become more difficult over time. That’s why having a thoughtful plan and working together is so important.

 

Parents may find themselves thinking, “I just can’t deal with that today.” And I understand why. When everyday activities become battles, it can be incredibly difficult to know when to insist, when to modify an expectation, and when to let something go.

 

I also see parents swinging in the other direction, trying to comfort and reassure their child when they become demanding or out of control. No one wants to see their child struggling to that extent, and parents may also be trying to protect them from the fallout of their behavior. They’re hoping that providing enough comfort and reassurance will help things settle down. Sometimes it does, but comforting a child in the moment doesn’t necessarily address the behavioral patterns that may be developing.

 

Over time, these patterns can become more complicated. A child may become more resistant, while the adults around them become increasingly hesitant to introduce expectations or make changes. Sometimes everyone becomes stuck, even though they’re all trying to make things better.

 

I’ve been an occupational therapist for decades now, and it can be heartbreaking to see how difficult some of these situations become. Most parents don’t imagine that their family will reach a point where everyday activities feel nearly impossible. They hope things will improve, that their child will mature, or that the next therapy or strategy will finally make the difference.

 

I don’t say this to frighten anyone. I say it because I believe there are things we can do to help, and I don’t want families to feel that they have to remain stuck.

 

Sometimes we need to reduce demands or provide more support. Sometimes we need to teach a missing skill. Other times, we need to help a child gradually develop the ability to tolerate frustration, make decisions, accept feedback, or participate in something they don’t particularly enjoy.

 

The difficult part is figuring out what is appropriate for that particular child at that particular moment.

 

We also have to recognize that progress isn’t always linear. Something may work for weeks, and then suddenly your child says, “NOPE!” Now we’re back to figuring out what’s happening and what needs to change.

 

Again, I don’t have all the answers, but I have seen meaningful improvements with many of my clients when we combine sensory integration, executive functioning, motor development, social-emotional learning, and behavioral approaches. It requires thoughtful planning, flexibility, and adults who are willing to work together.

 

Another reason I feel so strongly about this topic is that I am increasingly concerned about the quality of information parents and professionals are receiving.

 

We live in a time when information is readily available, but that doesn’t necessarily mean it is accurate. Social media has given families opportunities to connect, share experiences, and learn about ideas they may never have encountered otherwise. There are certainly benefits to that.

 

However, I also see how easily we can become attached to catchy terminology, popular explanations, and therapeutic approaches without fully understanding what the research actually tells us.

 

And this isn’t just happening with parents. Professionals can get caught up in these trends, too.

 

I think doctors and therapists have a responsibility to examine the information we’re sharing, return to the research, and help families understand what we know, what we don’t know, and where the evidence is still developing. This information should be part of the conversation when deciding on a plan of care for your child.

 

Just because an idea becomes popular doesn’t mean it’s accurate. But the opposite is also true. Just because something hasn’t been thoroughly researched doesn’t necessarily mean it has no value.

 

Sensory integration therapy is an interesting example. For decades, sensory integration approaches were questioned, and there were legitimate concerns about the quality of the available research. Yet occupational therapists were also observing meaningful changes in some of the children they treated.

 

Over time, researchers began studying specific sensory integration interventions more carefully, using better-defined treatment methods and more rigorous research designs. We now have stronger evidence supporting Ayres Sensory Integration for certain children and outcomes, although there is still much to learn (Schaaf et al., 2018; Schoen et al., 2019).

 

I think this illustrates why evidence-based practice requires more than simply asking whether something works or doesn’t work.

 

As therapists and doctors, we have to consider the quality of the research, our clinical observations and expertise, and the individual needs and circumstances of each child and family.

 

Sometimes the research is strong. Sometimes it is limited or inconclusive. Sometimes what we’re observing clinically raises important questions that deserve further investigation. None of those situations gives us permission to make claims beyond what we actually know.

 

This is particularly relevant to the growing discussions surrounding Pathological Demand Avoidance (PDA).

 

Many families identify strongly with descriptions of PDA because the behaviors and experiences being discussed sound remarkably similar to what they’re seeing in their own children.

 

I don’t think we should dismiss those experiences. However, PDA remains a debated construct and is not currently recognized as a standalone diagnosis in the DSM or ICD. Research has explored the characteristics associated with PDA (O’Nions et al., 2014), but important questions remain about how it should be defined, what contributes to these patterns of behavior, and which interventions are most effective.

 

My concern is that sometimes a label becomes so central to how we understand a child that we stop investigating other possible explanations or considering different approaches.

 

A label can help us recognize a pattern, but it shouldn’t prevent us from remaining curious about the individual child.

 

I also think we have to be willing to change our minds. We may begin with one explanation for a child’s difficulties and discover that something else is contributing. We may find that an approach works beautifully for a while and then stops being effective. We may even discover that something we believed was helping isn’t producing the changes we hoped to see.

 

That’s part of the process, and I think it’s important for parents and professionals to feel comfortable having those conversations.

 

These concerns, along with my experiences working with children who struggle with persistent refusal, avoidance, and inflexibility, are what led me to write two short books.

 

I wanted to take a closer look at the information being shared, examine the available research, and offer parents and professionals a practical way to think through these complicated situations.

 

The two books really represent my thinking process as a therapist. I wanted to show parents how we can look at an issue, research it, make sense of the information, and work together to decide what to try next.

 

I also wanted to create an opportunity for parents to lean into some of the uncomfortable aspects of helping children grow.

 

Not everything in life is fun. Some things are difficult, frustrating, or even mundane. Learning to navigate those experiences is part of growing up.

None of us enjoys seeing a child struggle, and we certainly shouldn’t take pleasure in their distress. But we can help children work through appropriate challenges while providing the support, encouragement, and security they need.

 

My first book, Pathological Demand Avoidance (PDA): Understanding Demand Avoidance, Looking at the Research, and Finding a Flexible Way Forward, takes a closer look at PDA, where the concept originated, how it is being understood today, and what the available research tells us.

 

It also examines the growing discussion surrounding low-demand approaches and considers how we can respect a child’s autonomy and support regulation while continuing to develop the skills, flexibility, participation, and independence they may need throughout life.

 

The book introduces my Flexible Demand Framework as one way of thinking through these decisions.

 

My second book, Exploring Causes and Approaches to Help Children With Persistent Refusal and Avoidance: A Practical Framework for Understanding the Difference Between Regulation, Refusal, and Avoidance, takes a broader look at these challenges.

 

Rather than assuming that all refusal and avoidance have the same cause, it explores the many factors that may contribute, including sensory processing, anxiety, executive functioning, cognitive flexibility, skill development, environmental factors, and learned patterns of behavior.

 

It also considers how we can begin identifying which factors are contributing to a particular child’s difficulties and how that information can guide our interventions.

 

Both books are intended to be practical, affordable, and relatively short reads. My hope is that they encourage questions, conversations, and new ways of thinking about how we can support children who struggle with refusal and avoidance. You can purchase them through Amazon.

 

I’ve seen meaningful changes in children and families who have struggled with these challenges, and I want you to know that improvement is possible. There are good things ahead, and it’s worth continuing to look for ways to help your child experience more of them.

 

Sending you all love and support!

 

References

O’Nions, E., Christie, P., Gould, J., Viding, E., & Happé, F. (2014). Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q): Preliminary observations on a trait measure for Pathological Demand Avoidance. Journal of Child Psychology and Psychiatry, 55(7), 758–768. https://doi.org/10.1111/jcpp.12149

 

Schaaf, R. C., Dumont, R. L., Arbesman, M., & May-Benson, T. A. (2018). Efficacy of occupational therapy using Ayres Sensory Integration®: A systematic review. American Journal of Occupational Therapy, 72(1), 7201190010p1–7201190010p10. https://doi.org/10.5014/ajot.2018.028431

 

Schoen, S. A., Lane, S. J., Mailloux, Z., May-Benson, T., Parham, L. D., Smith Roley, S., & Schaaf, R. C. (2019). A systematic review of Ayres Sensory Integration intervention for children with autism. Autism Research, 12(1), 6–19. https://doi.org/10.1002/aur.2046