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8 Things I Do to Live Well as an Autistic PDAer

I’m Autistic with a PDA profile. I was born with an overactive threat response that gets easily triggered, especially when I’m faced with a lack of control or autonomy, when or something or someone is exerting power over me, even subtly. My son is also PDA, which is how I figured out I am. I’m proud of being Autistic and PDA. But it’s also a very challenging neurology. My disabling brain difference puts me into threat mode quite easily – Fight, Flight, Freeze, or Fawn (people pleasing out of fear). I do all four F’s, but my go-to threat responses are fawn & flee. Often you can’t tell from the outside. When I “flee” it’s usually a sensation inside me. I don’t actually run away.


The most important thing I can do for the sake of myself and my family (and the world) is to lower my baseline nervous system activation. In other words, make choices that create a sense of safety for my brain and body so I spend more time calm & regulated, & less time in threat response.


How do I do this?


(1) POSITIVE IDENTITY


I proudly identify as PDA and Autistic. After decades of confusion and searching, I finally know was born this way. It’s not a personality flaw. This removes shame and helps me find community. We celebrate Autistic culture in our home, & talk openly about our PDA brains - both the strengths and disabilities.


(2) MEDICATION


All the other accommodations I’m going to talk about are necessary but not sufficient for me. I know from experience that without the right dose of the right meds, I would be incapacitated by anxiety & demand avoidance. I take a baseline anxiety med, plus a beta blocker for social anxiety (If anxiety medications have not worked for you, you might consider asking your doctor about beta blockers, which help with the physiological symptoms of an overactive threat response like a racing heart or tightness in the chest). I also take meds to sleep, & I have one as needed for really intense anxiety/panic. I used to feel ashamed of all the bottles on my nightstand. Now I’m just grateful because I know I’m Autistic and PDA. I need medicine to help my brain function in the modern world. It’s not cheating - it allows me to heal & live.


(3) LOW DEMAND LIFE STYLE


Low Demand Parenting helps PDA kids and has been instrumental in my child healing from a 10-month burnout. But Low Demand isn’t only for kids! We can all do Low Demand Living. It means that whenever we can, we meet our needs without asking too much of our nervous systems. For instance, I dropped the demand on myself to socially eat. Yes, we dropped family dinners. We do family time in other ways. It’s been great for all three of us - me, my husband, and my PDA Autistic child. I eat in front of Netflix or a book, so I can feel my hunger, eat enough, not choke, and not get a bellyache. If I go to a social event, I usually eat before or after. I eat my safe foods. No pressure to be adventurous. All of this lowers my threat response so that I can eat enough and digest my food.


(4) SPECIAL INTERESTS


I orient my life around my special interests. And when I say orient, I really mean it. I’m 41 but have already had several careers, each based on what I now can recognize was a special interest (environmental educator, congregational rabbi, climate activist). I’ve learned to accept that my special interests come and go, and I have dropped shame about that. My basic passions for creative expression, mastery, learning, justice, and service have stayed the same. But the content changes, and I do my best to change my work and time allocations it does. Is this a huge privilege? Yes. Is this a necessary accommodation every PDAer would ideally have access to? Also yes. Because special interests are a big way we regulate in the face of demands. And jobs are full of demands.


(5) SENSORY SUPPORTS, EXERCISE, & STIMS


As an Autistic, I need the right sensory input to help my body regulate. As a PDAer my brain needs novelty and dopamine to regulate. On any given day I might regulate with: vigorous exercise, dancing, stretching, weighted blankets, a therapy swing, deep hugs, a compression vest, vibration, putty, fidget toys, my dog, my phone, snuggling, walking, touching tree bark on a hike, holding stuffed animals, a hot shower, a hot bath, a sauna, a massage ball, a massage, lightly tickling my arms, playing with my hair, kinetic sand, holding hands, brown noise in my ears, loud music in my ears, and many more....


When my son could not leave the house for ten months due to PDA burnout, we got very creative about what high dopamine exercise he and I could do at home.


  • 3-foot trampoline

  • Indoor door-jam swing

  • A loft bed ladder and a door-jam hanging ladder

  • A trapeze swing over a beanbag

  • A set of indoor stairs that came with the house!

  • Clear floor for indoor chase games

  • A therapy swing for climbing (as well as relaxing)

  • An exercise machine

  • A VR headset with workout apps installed

  • Living room pillow fights

  • Yoga mat


(6) SOCIAL ACCOMMODATIONS


As Autistics go, I’m pretty extroverted. I have many dear friends and love socializing. But sadly for me, my autonomic nervous system does not love socializing. I know this because my heart races, I feel terribly jittery, and I get exhausted during and after. Now that I finally understand what’s going on for me, I use social/communication accommodations:


  • I do many conversations over text, or voice memos.

  • I limit my social contact in any given day and try to keep in-person or phone conversations to under 50 min.

  • When in person, I avoid eye contact (I look at people's noses or foreheads. If the emotional content is heavy, I will often look off to the side to allow myself to focus on staying calm instead of the details of the person's face).

  • I use fidget toys,

  • I try to sit next to the person instead of across from them, or below them.

  • On Zoom, I look at my own face.

  • If I have a big social day, I will need a big rest day after.

  • I started taking beta blockers, which has helped tremendously.


(7) COGNITIVE STIMULATION


I love being inundated with cognitive information. I used to feel a lot of shame about how much I “distracted” myself from the present moment. Now I embrace that cognitive stimulation is just a tool I can use for my Autistic PDA brain to feel safe and relaxed. Daydreaming, reading, crafting, screens, and podcasts are all part of the mix. When I eat, I almost always read or watch Netflix. I’m home full time with my PDA child, & I am on screens a lot when he doesn’t need me - to connect to friends or you all online, or to do work on my laptop. I have let go of shame around screens, and see them as a tool I can use wisely.


8) SLEEP & REST


I have always needed a lot of sleep to function. I can’t tolerate caffeine (it makes me feel like I’m crawling out of my own body) so the only thing to do is get enough rest. This is very tricky since my body has trouble regulating enough to sleep. So... it doesn’t always work, but my bedtime routine includes sleeping meds, a hot shower or time in a therapy swing, then getting in bed under two weighted blankets, with blackening curtains, white noise, an eye pillow, and sometimes vibrating stims in both my hands or on my chest. My circadian rhythm tells me to be in bed 11pm-9am. I’ve always struggled with mornings, so starting homeschool for my kid (which we only did because he desperately needed it) has been great for my sleep.


Making accommodations for ourselves as late-diagnosed neurodivergent adults is a paradigm shift. Many of us have spent decades overcompensating for our hidden disabilities and living beyond the means of our nervous systems. If you're reading this blog, you have likely felt the consequences of that overcompensation. The paradox I have learned is that freedom comes from accepting my disability and living within its constraints. What that looks like for you will be different than what it looks like for me, but we will all benefit from learning what boundaries and accommodations we need to live well.


If you are an Autistic adult who would like 1:1 support, book a coaching session with me!

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