Some parents of autistic kids may find that their kid avoids even the simplest tasks. The kid may have strong avoidant reactions to being asked to do things like brush their teeth, change their clothes, or even eat a food they enjoy. For these kids, any request can be a trigger, even if it’s for something the child enjoys. They may get upset, uncontrollably silly, angry, overwhelmed, or “stubborn.” A request may be met with a variety of responses including bargaining, jokes, distractions, or big emotional reactions. Kids who demonstrate this extreme difficulty tolerating requests may have a PDA profile of autism.
What is PDA?
PDA traditionally stands for “Pathological Demand Avoidance” but many in the community prefer to refer to it as “Pervasive Drive for Autonomy” to highlight the need for independence. PDA is a profile of autism which causes the autistic person to have a deep-rooted need for autonomy, typically presenting as an avoidance of external and internal demands. The core cause of PDA is thought to be a very sensitive nervous system. Perceived demands or loss of autonomy may cause a person with PDA to feel unsafe on an unconscious level. When this feeling of danger is triggered, the person’s body will typically respond in one of three ways: Fight, Flight, or Freeze. While we frequently think of avoidant behavior as large emotional outbursts or frustration (the fight response), it’s very common for kids with PDA to use social skills to deflect (the flight response). This may sound something like, “I can’t do that because the floor is lava and I can’t touch it.” Bigger responses such as eloping, emotional shutdown, or lashing out usually indicate a very deep feeling of unsafety.
Anything can trigger one of these responses if it’s perceived as a demand, it’s not a one-size fits all list. Some people with PDA are so sensitive to demands that needs within their own body can trigger an avoidance response. This can include even the most basic physical cues in the body like hunger or the need to pee. External demands can range anywhere from being directly told to do something to nonverbal expectations, such as having an outfit laid out on the bed to change into. Notably, things that are meant as rewards can also be perceived as a demand. “You did a great job so you get a sticker!” seems well-meaning to us on the outside but for a PDA kid, that can create pressure to do just as well next time.
Can't they just learn to tolerate demands?
Individuals who experience PDA may go into burnout if they force themselves to tolerate too many demands over an extended period of time. Burnout shows up as a loss of tolerance to even the most basic internal and external demands, even if they are usually tolerable. Things like using the bathroom, eating, participating in conversation, and doing enjoyable activities can feel impossible, creating that feeling of deep unsafety. People experiencing PDA burnout require a complete removal of demands from their environment to help regain nervous system regulation. Recovery can take months to several years depending on the severity of the burnout so our goal is to prevent it in the first place!
How do I help my kid with PDA?
Working with a child with PDA is built on a foundation of trust and mutual respect. The most important thing you can do for a kid with PDA is treat them as an equal partner in their own life. Giving up control in some situations can feel counterintuitive and scary to a lot of parents but it’s important to remember that the loss of control is just as scary for your PDA kid and giving them more control is an important step in building a sense of safety and trust. A loss of autonomy in the smaller parts of life (what to wear, how to play, when to leave) can make it hard to tolerate the essential demands (care tasks, hygiene, eating, school, etc.).
One of the ways you can rebuild the sense of safety is by removing all non-essential demands. This can include changing the way you talk to your child to emphasize neutral statements over questions and directions. For example, you could try saying “Wow it sure looks cold outside” instead of “You need to put your coat on.” Other types of factual sentences such as “I wonder…” “I see…” and “I noticed…” can help keep your statements neutral and non-demanding.
It’s important to note that when you use neutral statements, you’re giving your child autonomy in that moment. You can point out something such as: “I wonder if dirty hands would make our food taste different. If my hands were dirty, I think it would get germs in dinner.” Your child still gets to make the choice if they want to act on the information you’re presenting.
What therapies can help?
There are a few types of therapies that are recommended for kids with PDA:
- Occupational Therapy – For helping to learn about sensory and emotional regulation of the body
- Psychological Counseling – To help navigate feelings surrounding PDA and avoid trauma around PDA reactions
- Speech Therapy – To help teach and navigate the language and social skills necessary to self-advocate and narrate feelings
Behavioral therapies are not recommended to help with PDA as the PDA response is not a conscious, teachable behavior. While behavioral therapies might be able to teach kids how to hide large reactions, they are not addressing the root unconscious fear that the reactions stem from which could lead to burnout as kids force themselves to push through demands.
What does Speech Therapy for PDA look like?
Speech therapy for PDA focuses primarily on three areas: language, pragmatics, and parent coaching.
Expressive language skills help the child with PDA have the language to describe their experiences and needs. Being able to share when something feels demanding and articulate their emotions is an important step in being able to better manage their needs. A speech therapists goal would be to teach the child self-advocacy statements such as “I didn’t like that” or “I feel upset you asked that” to help them express their emotions and needs in the moment of frustration. The goal is to help build reliable language the child can use when feeling dysregulated to help them make sense of their feelings and share their needs.
Pragmatics is the social use of language. Speech therapists can help teach skills such as identifying other people’s perspective, knowing when to self-advocate, how to request accommodations, and other uses of language in social contexts. Therapy in this area would have a focus on helping the child identify why a specific demand may have been given and what their options are to advocate for themselves. Additionally, the therapist would help them figure out how they can preemptively talk to teachers, peers, and others about their needs. Self-advocacy is a vitally important skill for kids experiencing PDA, especially older children.
Finally, a speech therapist may spend time collaborating with parents to find ways to help them adjust their own language to better help their child. This could include practicing declarative statements as well as navigating how to share information with teachers, coaches, and other adults in the child’s life on how to help them succeed. Finally, the speech therapist may be able to provide information on how to adjust the overall environment and routines to support a child with PDA.
Resources
If you believe your child may have a PDA profile, the following are excellent resources to continue learning more about it:
PDA North America is an organization committed to helping share information and resources surrounding PDA while centering the lived experiences of those who experience PDA https://pdanorthamerica.org/
PDA Society is a UK-based organization who share resources and information about PDA https://www.pdasociety.org.uk/
PDA Parents is specifically a parent-focused website. It has blog posts covering a variety of topics to do with parenting PDA and setting up the home environment for success: https://www.pdaparents.com/
Finally, if you have concerns that your child may have a PDA profile of autism, reach out to providers who are familiar with PDA and able to support. PDA North America has a list of a variety of types of providers that are familiar with PDA across every state (https://pdanorthamerica.org/pda-affirming-providers/). Here at Kid Connections Speech Therapy, we have therapists experienced with PDA who can help support you and your child through learning more and supporting daily regulation.