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9 Core Accommodations for Autistic PDA children & teens

By Rabbi Shoshana Meira Friedman


Conventional parenting strategies do not work for PDAers.


Without knowing about PDA, families like mine often struggle for years in shame and distress, wondering why all the professional advice of rewards and consequences, routines, schedules, and firm boundaries are only making things worse. PDA children (and adults) need a different approach. We need a life that allows us large amounts of autonomy, control, and social equality, as well as co-regulation to support our hypervigilant nervous systems. If we don’t get this, PDAers will eventually have trouble meeting one or more survival needs: eating, sleeping, hygiene, toileting, safety, and connection to loved ones. This is PDA burnout.


Follow Casey Ehrlich @atpeaceparents for more great resources on basic needs & burnout recovery.


PDA is a disability, which simply means a PDA person needs accommodations to live well. PDA-specific accommodations are all about helping us stay out of our overactive threat response as much as possible. If we can clock large amounts of time feeling safe, PDAers can shine in our many strengths and thrive within the limits of our disability.


As I explain to my clients, accommodate the underlying nervous system disability, and wellness will follow.


(There’s a lot I can and will write about how to apply these to PDA adults, but this post is focused on young PDAers.)


1) Low Demand Parenting

There are countless losses of autonomy, control, and equality embedded in a typical child’s life. From getting dressed and saying please & thank you, to responding to a question, to the thousands of expectations of a school day. To a PDAer, many or most of these are felt as threat in the body. These demands/threats accumulate in the body and often lead to burnout. Low Demand Parenting is the art of wholeheartedly and proactively dropping demands that stress your child’s nervous system in order to prioritize their sense of safety & connection, all while finding creative ways to meet your own needs.


2. Social Equality or High Status

PDAers feel safest when we are treated as leaders, equal partners, or collaborators.


Example: “Time to go” turns into “I’m feeling ready to leave the playground, but I wonder if you’re ready yet.” If you have a time crunch and don't want to leave it so open ended, give the PDAer the reasons for the time constraint in a calm, non-anxious tone, and ask for their leadership in the process. "Sister has an appointment, and I notice we need to leave in five minutes. You're in charge of what last activities you and I do before we go." If the child gets upset, do your best to stay calm, minimize speech, and allow them to discharge the threat response. Struggling against them will make the transition take longer.


Offer opportunities for fun play where the child/teen is in charge of their adult. Healthy opportunities to equalize allow PDAers to shine as decision-makers, creative problem-solvers, and experts in our areas of interest.


This doesn't mean that you always need to collaborate with your PDAer. Just that you recognize that when you don't and the decisions involves them, there will likely be a nervous system cost to the child, and you may see challenging behaviors that are an expression of the threat response.



3. Parent as External Nervous System

Since we go into threat so easily, PDAers often rely on another person’s nervous system to regulate. For children, this is usually a parent, and often the parent's undivided one-on-one attention. In fact, a parent’s calm nervous system is itself a main accommodation for a PDAer. It makes sense if we remember that a PDA is best understood as a nervous system disability in which a person goes very easily into threat response. Like infants, PDA children rely on the pre-frontal cortex of a trusted adult. This is exhausting and can easily lead to caregiver burnout. If not with a trusted other person, a PDA child will usually need to be engaging in a special interest, on a screen, or engaging in pleasurable sensory experiences. Casey Ehrlich calls this the 4 S's: Safe Nervous System, Screen, Special Interests, and Sensory or high-dopamine experiences.


4.Speech & Language accommodations

Even highly verbal PDAers still need speech/language accommodations.

  1. Declarative Language: Change direct questions or commands into simple statements of fact. “Come eat your lunch” turns into “Here’s your lunch.”

  2. Hold back from initiating non-essential conversation as much as possible. Allow the PDAer to initiate conversations and follow their lead on topics.

  3. Rely less on spoken language cues. “Here’s your lunch” can get even less threatening if you just drop the words entirely and place the plate where the PDAer can see it.

  4. Use AAC (technology or other speech aides), even if the PDAer can speak with their mouths. Texting can feel easier than speaking to a stressed PDAer. So can pointing to an image.

  5. Parallel play without words. Even though we may be highly verbal (not all of us are, but many), PDAers may find the act of speaking and listening stressful. PDAers can feel safe and relaxed just simply being in the presence of calm, loving people without speech. Don't feel the need to make conversation. Follow our lead, if you can.


5.Special Interests

Leave behind the idea of “restrictive interests” and view special interests as a portal to the world for your PDA child. Join them in their play, let them teach you about their expertise, & never withhold access to special interests as a bribe. Special interests are key to an Autistic person’s ability to regulate, feel safe, & access meaning, belonging, learning, and joy.


6. Flow state

Autistic brains are wired for deep, long attention. Every interruption to this attention is stressful and may be perceived as a threat. Deep joyful focus – whether it’s in a special interest, creative project, sensory activity, screen, infodump, or imaginative play – is healing and regulating for PDAers. Before interrupting flow, consider whether the interruption is worth the cost. Sometimes it will be, but not always.


7.Sensory Accommodations

Like other Autistics, Autistic PDAers have uneven sensory sensitivities. We may crave deep pressure and high energy exercise & impact, but may be highly sensitive in smell, texture, taste, vestibular, or certain kinds of touch. Get to know your PDAer’s unique sensory system and offer sensory supports and pleasurable sensory experiences. If your PDAer is not in burnout, they will likely benefit from a child-led Occupation Therapist who focuses on whole body sensory integration (as opposed to fine motor school skills). If in burnout, it’s not the time to work on this outside the home, but you can strew opportunities for satisfying movement at home. Check out Out-of-Sync-Child.com for a great introduction to the sensory system


8.Strewing

Directly suggesting something to a PDAer can trigger our threat response. Strewing is the answer here. Instead of “Wanna do a puzzle with me?” just “strew” the puzzle out where your PDAer will see it. Instead of “Let’s go to the park today!” just say “It’s beautiful outside and I’m thinking of going to the park.” Accept that we may or may not “pick up” what you strew, but if you directly invite or command us the chances are even lower.


9.Expansion & Contraction Cycles

After an experience outside our safe zone, even if it’s something we love, PDAers will naturally contract into our safe place for a while. This can be within a day - for instance, after a 45 minutes social visit, my 6yo PDAer will be abruptly done, and need time with his special interest in his safe place to rest and recharge. It can also happen over a longer time frame. For instance, a PDA child who goes to camp over the summer and has a wonderful time may need extra rest time home in the fall, and may not be able to healthily start school on time.


The trick here to to remember that when PDAers can engage in activities, we will. And when we can't, we can't. it's not a matter of will power. It's a matter of the nervous system.


Honoring the need to rest is part of what it means to accommodate a dynamic disability - a disability where our needs for support change day by day depending on many factors.


Honor the need for your PDAer to rest, and you will help them avoid burnout.



 

Ready for 1:1 support for you as a parent or spouse of a PDAer, or as a PDA adult? Book a FREE info session to learn about my coaching practice.

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