by Rabbi Shoshana Meira Friedman
How can we drop demands & offer autonomy, control, and social equality in a medical setting? How can we make doctor's appointments more accessible to PDAers?
(This post is geared to parents of kids and teens but is relevant to anyone who finds the doctor stressful).
A client recently told me that she had taken her PDA teenage daughter to a regular check-up, and it was extremely stressful. The staff talked to the mom as though the teenager weren't there, and the doctor had so many questions - both in the forms, and during the exam. Then there was the exam itself. There were so many jabs at the PDA teen's nervous system that she went into freeze.
I've worked very intentionally since my son's burnout to bridge the doctor and the dentist back into his safe circle, so let's talk about how to help.
Sketch your child’s safe circle before making the appointment
In The PDA Safe Circle™, we use the metaphor of a circle to describe the nervous system. By sketching what your kiddo can currently access in their daily life, you’ll get a sense of how big their safe circle is, & whether they (a) have capacity to “fit” a routine medical visit inside it, or (b) you need to allow their circle to widen before they can access a medical visit without going into threat mode.
With such a small a safe circle, this example kiddo doesn’t have capacity to access a medical visit without struggle. In an emergency, you do what you have to do - but for routine visits, this safe circle is indicating it’s best to wait. Also, you can ask your provider about a day-of anxiety reducing medication (i.e. lorazepam, hydroxyzine) to help with routine or emergency appts.
Postponing doctors & dentist visits isn’t what we wish for, but it can be the better of the two options given a PDAers disability.
This holds for adults too! It can feel very uncomfortable or downright scary to miss a medical appointment for those of us raised with the expectation and privilege of regular medical care. So ground in your "deep why," as Amanda Diekman puts it. Yes, you have to postpone a medical appointment. But you're not doing so because you're a negligent parent or person. You're doing it because you discern that the cost to your PDAer's nervous system and mental health is not worth the benefit of the appointment - or because you physically would be unable to get your child there in the first place. (All of this holds for adult PDAers caring for ourselves as well).
Given the choices you have, you are making the best decision you can.
Draw a Demand Diagram
If you discern there is room in your kid’s safe circle to make a medical visit possible, the next step is to sketch a demand diagram. In The PDA Safe Circle™ approach, we visualize demands (i.e. perceived threats) as arrows jabbing at the PDAer’s safe circle. This is a visual exercise inspired by Amanda Diekman (@lowdemandamanda) who talks about being a demand detective. Get as granular as you can about what is hard for your kid about going to the doctor. They don’t have to participate in this exercise for it to be helpful.
This is an example of a demand diagram for a child going to the doctor. Every PDAer is unique, so your job is to get specific about what might feel threatening to your specific PDA child.
Be intentional about how you tell your child about a doctor's visit. It's important to cue safe, no-big-deal energy. Remember to trust that your PDAer wants their body to be healthy, and that the only thing in the way would be fear or threat response. When you exude trust in their strengths and highest nature, the child or teen feels that and - even subconsciously - it can help mitigate stress.
Look at which of these arrows you can remove entirely or mitigate. Strategize.
For instance: If answering the doctor’s questions is as arrow, think about what is too hard about it, and solve for that: Can you get a list of questions ahead of time & type up the answers for your kid? Can you answer for your child during the visit while they play on a phone? Can they type the answers on a device & show it to the doctor so they don’t have to speak aloud?
For instance, to mitigate a loss of control or social equality during the exam: -You can make a visual or written menu of the exam tools, & the child picks which you do when. -You can tell the child the doctors need to check the equipment & would the child be willing to help check it. (Puts them in high status role) -You can ask the staff (ahead of time) to ask your child about their special interest before the visit starts, putting them in the role of expert. You can go further & prepare a short consult for the doctor/nurse on the special interest. My kiddo & I prepared a Minecraft consultation for his doctor about how they could use Minecraft stickers on medical tools to help kids feel more comfortable.
Message the provider ahead of time with accommodation requests, including a heads up for any specific interactions you'd like them to participate in.
Message the provider the week before. “My child is PDA* (or, if they don't know about PDA yet, you can just say neurodivergent or disabled) and they find following direct instructions or giving up control and autonomy very stressful or even impossible. I want to share some accommodations we need that will help them stay out of threat response during our upcoming check-up. Can you share this with any staff who will be interacting with us? Thanks in advance!
Allow the child to opt out of any part of the exam if their threat response is activated and their health is not in imminent danger.
Keep your eye on the prize: a child who feels safe in medical establishments. Can’t tolerate an ear exam? Well, unless you have an earache or hearing loss, skip it. Even if they do have an ear issues, use accommodations to try & keep the threat response down. Can the doctor avoid looming over the child? Can the child eat icecream or watch YouTube on your phone while it happens? Can they hold the instrument with the doctor?
Cancel when needed, even at the very last minute
I can’t tell you how deeply I regret the time I carried my panicking, flailing undiagnosed PDA Autistic child into the doctor’s office for a routine check-up. It nearly destroyed my back, it added to his accumulation of threat response that led to burnout, and it added to bad associations with the doctor. I thought that I needed to keep the appointment, cause that’s what responsible parents did.
I now know that being a parent to a PDAer means having a different responsibility: Respecting my child’s nervous system limits as much as I possibly can, even when that means disappointing other people. If my child’s life were in imminent danger, yes I would need to force him to medical care. But for a routine office visit? There are better ways. And cancelling or rescheduling is an option. I don’t know if this is true everywhere, but I have cancelled my kid’s doctor & dentist last minute multiple times and never been charged. They tend to be more flexible than, say, a private therapist & they know he’s PDA.
You can also ask for a Telehealth appointment or ask to go in without your child present if you want to speak to the provider. You get to advocate for what you need.
The PDA Safe Circle™ is launching as an app, course, and community of practice in 2025...
Imagine belonging to a community of PDAers, family members, & allies where everyone learns the powerful & simple approach of The PDA Safe Circle™.
Imagine being welcome in regular group coaching that I lead, but also opting in to intimate, ongoing, interest-based group(s) for peer coaching.
Imagine that, by joining, you are supporting systemic change to make the world safer for PDAers.
Imagine feeling empowered & connected.
Imagine staying as long as you want to.
留言