It is natural to avoid demands placed upon us. But, if you are autistic and have PDA (pathological demand avoidance), you most likely find yourself having a much more intense response to requests. In fact, unlike other forms of demand avoidance, PDAers oftentimes respond to their own demands with just as intense a reaction of panic. It can be very confusing, to both you and those who love you. Let's say you love to write in your journal. You know writing in your journal brings you joy and comfort. You see your journal across the room and consider writing in it. The PDA part of you jumps in, as it is in the driver's seat here. You feel a rush of adrenaline go through your body. You realize you cannot write in your journal even though you LOVE writing. You might then head back to your bed and put the covers over your head to disappear or just grab your phone and start scrolling.
In my coaching sessions with PDAers, they often share that they are confused over their own behavior. I hear a lot of "I used to...paint, journal, read, write short stories, garden, build legos, complete puzzles" and the list goes on. The theme is generally one of their stating that they used to do things they loved and cannot bring themselves to do those passions now.
When chatting with Heather Jessup, co-founder of Journeys with PDA and Certified PDA Trainer, we discussed how pathological demand avoidance met with autistic burnout can lead to the inability to do nearly anything until your nervous system is absolutely ready to venture out after having the rest and recovery it needs. On their Journeys with PDA Coffee Chat Podcast, Heather and her co-host, Kerissa Lyman, discuss all things PDA. For baffled loved ones and PDAers alike, their episode entitled "Pathological Demand Avoidance (PDA) vs. Autistic Avoidance-What's the Difference" may be particularily enlightening. While Heather and Kerissa often talk about PDA as it relates to their children and teens, adults with PDA may find their show equally as helpful. I know I did as a coach of adults with PDA.
PDA has not gotten the focus it deserves. Europe is certainly taking the lead on research and the USA is far behind. Below, I examine what we do know about how you can help yourself or others can be more supportive.
Create ways to feel less pressured
Pay attention to what YOU need to feel okay. Offer yourself gentle self compassion, removing “shoulds,” shame, and expectations. Keep in mind that "shoulds" can actually be internalized ableism. All your life, you have been schooled through a neurotypical lense. Now, you are expecting more than you may be able to give at this moment.
Ask yourself: What can I do right now? What can’t I do right now? Maybe all you can do is read in bed or game on your phone. You may be completely burned out from masking and "should-ing" and need a long break and will return to doing more when your nervous system, body, and brain know that you are ready. I find that many young adults graduating from high school masked and pushed themselves for so long that their rest period may be significant, sometimes longer than a year. However, by noticing what is possible and impossible, and giving yourself (or your loved ones, moms and dads) time to take it very, very slowly will bring you back to the life you desire and deserve. This is a time for lots of patience. You will come back. We can't rush the healing.
Know that doing well at something can add more pressure for the next time. Be oh-so-gentle with yourself. Just because you could accomplish a certain task last week doesn't mean that you are necessarily up for it today. Different days offer different energy and anxiety levels. Pace yourself. Complete more tasks on the higher-energy days and give yourself permission to rest and enjoy your passions on the less-energetic days.
Important: Your PDA is often in the drivers seat and has a "no" response ready. Baby PDAers as young as 6 months have turned away from their own toys when they felt pressured. Those who have gotten to know their PDA well explain that a "yes" is available once you are ready. Allow people you trust to create scaffolding and supports until the "no" can eventually turn into a "yes". Do you have your comfy clothing on? Should you nibble on some fruit or take a drink of water?
If you need more significant rest, this may mean that school and/or work will need to wait until you feel ready. This is especially hard for parents of young adults to imagine. We parents have been trained by society and our own parents to push through discomfort and just make things happen. But, this is our ableism jumping in, trying to save the day. With PDA, you are not ready until you are ready.
Use fantasy, roleplaying, or an "oh well" attitude toward a task
When you do feel ready to take the plunge and take a step in the direction of your goals, there are some strategies that may help. A strength of having this profile tends to include a rich fantasy life. Use it to your advantage to accomplish what YOU want to complete. As an example, an autistic grad student may create a super hero version of herself so she had to complete her graduate work. She finds that the anxiety melts away when she includes this type of role-play, and it makes life so much more fun! Speaking of fun, consider turning the situation into a game. Many PDAers say the sillier the better.
Have a big project due soon? Take off the pressure by deciding that it may or may not get done--and that is okay! Some PDAers tell me this is when they can actually get things done, by changing the self talk and deciding it will get done when it gets done. Many times, the task will actually get done more timely when you add fun and remove the deadline. In the case of a school project, talking with your professor or disability office and informing them of your autism and PDA profile and need to have extensions on deadlines can also remove the stress of the due date. It might also be helpful to ask for the ability to get recorded or printed notes for missed classes. Again, work with your disability office on these types of accommodation.
Similarly, talking with your supervisor or human resource department at work to build support for yourself regarding competing deadlines can remove some of the intensity of your timelines. Our coaches can offer you support you need in deciding next steps.
How others can support you
Explain that being flexible and understanding means a lot. Loved ones need to understand that this is a “can’t” situation, not a “won’t.” Empathy and validation will go a long way with you.
Share that the more information and options you are are given, the greater change you can succeed. Offers of rewards or accolades will not help, in fact your self esteem may take a nose dive and your anxiety will substancially increase. You WOULD do that "thing" if you could. Remind them that you find yourself unable to do the things you WANT to do as often as the things they want you to do. Also, ask them to keep in mind that indirect demands can be as difficult on you as direct demands.
Another way to feel supported is by joining a PDA group. Last August, a new Facebook group started which is called PDA Adults/Young Adults Only: Pathological Demand Avoidance. This group is for PDAers only.
Consider sharing this article or the link to Heather's podcast with those you love so they can begin to understand you better.
Lastly, allow for a lot of demand-free time. There really is something to getting enough rest and enjoying your passions as you become ready. It can make such a huge positive difference on your mental health. And, isn't living a passionate, enjoyable life what most of are striving for, anyway?