Working with your Therapist Around Low Demand and PDA

Navigating Conversations with Providers About PDA and Low-Demand Parenting

When it comes to parenting a child with Pathological Demand Avoidance (PDA), understanding and collaboration from educators, healthcare providers, and therapists are crucial. However, explaining PDA and the necessity for low-demand parenting strategies can sometimes be challenging, especially when encountering resistance or disbelief from professionals. 

Before I say anything else, I want you to know that you deserve to be believed and supported. Gaslighting from medical professionals and therapists is one of the main concerns and sources of pain that I hear about from parents. You deserve to be heard, and if you want to walk away from a therapist who is simply not supporting you the way you know you need to be, that can be an incredibly wise and empowering decision. 

I also know that not everyone has the ability to walk away from a therapist or provider. Nor do we always want to or need to. This blog post explores effective ways to navigate these essential conversations with a focus on ensuring your child receives the understanding and care they need.

Understanding Your Audience

Firstly, recognize that not every provider will be familiar with PDA or receptive to alternative parenting approaches. Their professional backgrounds, preconceived notions, or even the constraints of their roles might make it difficult for them to grasp this concept initially. Here's how you can approach this situation:

1. Acceptance: Understand that some providers may never fully get on board with the PDA model due to their biases or professional guidelines. It might be necessary to adjust your expectations or even consider finding a provider more aligned with your child's needs.
2. Education: Instead of expecting providers to independently research PDA, offer them concrete resources and explain how specific low-demand strategies benefit your child. This can help bridge the understanding gap without overwhelming them.

Here’s a script you could adapt to share about PDA and low demand with your therapist:

Pathological Demand Avoidance, or PDA, is a profile within the autism spectrum where an individual experiences a survival need for autonomy and control, and where their nervous system has an acute reaction to perceived threats. Everyday demands and expectations like saying hello, sharing toys, choosing what to eat, and needing to use the bathroom can be debilitating. The low-demand approach we're using focuses on reducing these everyday demands to create safety and bring stability, so that my kid can learn, grow, and eventually thrive. This method isn't about having no expectations but rather about adapting our approach to focus on safety, connection, and collaboration. We find that giving our child control and flexibility in therapy is the best way to encourage engagement and learning. 

Communicating Effectively

When discussing PDA and low-demand parenting strategies, clarity and empathy are your allies. Here’s how to structure these conversations for better outcomes:

- Focus on Relationship Building: Emphasize the importance of building a trusting relationship between your child and the provider. Share about their special interests and empower the therapist to spend time engaging in your kid’s or teen’s world before inviting the kid into theirs. Explain that certain accommodations, like allowing the child to signal when they need a break, can foster trust and make therapy sessions more effective. 

When we set goals for therapy, I always start with trust and communication based goals, and until those goals are met, we do not move forward with any other types of learning or behavior change. Trust-based goals sound like, “My child eagerly chooses to come to therapy or to engage with the therapist without outside pressure or coercion.” “My child talks about special interests with excitement with the therapist, who understands what my child is talking about and can engage back.”

- Provide Concrete Examples: Instead of abstract theories, share specific instances where certain approaches have helped your child. Concrete examples can be more persuasive and easier for providers to relate to and implement. 

For example, I often share that my child does not like to be spoken to directly. It is much better to wait until he speaks to you, which indicates that he’s safe and ready to engage, even if that takes several sessions. I will also share that a part of the trust-building process is his rejection and denial of connection. He is learning whether he is safe to express his needs by saying “no” to the therapist or to the therapist’s ideas. When we honor the “no,” we make it safe for him to learn to say “yes” to this connection and this safe space.

- Collaborate on Strategies: Engage providers by asking for their input on adapting strategies to fit within their professional framework. This collaborative approach can lead to more personalized and effective support for your child.

I will often spend several sessions collaborating directly with the therapist before introducing my child into the relationship. The ideal process, I’ve learned, is to begin with virtual calls, where my child can be on camera for tiny bits of time, or simply hear the therapist’s voice and see their face, witnessing my growing trust. This process enables us to practice curiosity for one another and to gradually build safety. It also helps when we create opportunities for the therapist to play and interact with my child together with their siblings, which takes the pressure off the 1:1 relationship. Even with therapists that we’ve been with for years, my children prefer to have me in the room or have a sibling come (or both!) to reduce the pressure for direct interaction.

Practical Tips for Parents

- Prepare for Resistance: Not all strategies will be accepted right away, if at all. Be prepared with alternatives and be willing to compromise where possible.

- Empower Your Child: Teach your child self-advocacy skills appropriate for their age and understanding. For example, having a 'stop button' during sessions that they can press if they feel overwhelmed can give them a sense of control. Provide them with a cell phone to text you, if they need to leave a session.

- Set Clear Expectations: Clearly communicate your child's needs and the reasons behind them to all caregivers and providers, ideally in front of your child so that everyone knows the expectation has been stated. This ensures consistency across different settings, which can help your child feel more secure.

Navigating the landscape of professional support for a child with PDA requires patience, resilience, and clear communication. By understanding the perspectives of providers, effectively conveying your child's needs, and empowering your child within these interactions, you can create a supportive network that truly understands and accommodates your child's unique way of engaging with the world.

Resource to Share:

“Finding an Aligned Provider” resource created by my colleagues and friends, Jessica Richards and Stephanie Myung. This is a rich list of questions to ask in the assessment process to help families locate a provider who is aligned with a nervous system perspective.

Link: https://www.jessicarichardslcsw.com/finding-an-aligned-provider