It’s not a formal diagnosis so it’s also called Pathological Demand Avoidance but that is seen as outdated.

There is the wiki article: https://en.wikipedia.org/wiki/Pathological_demand_avoidance I think it would be more useful to explain what it looks like in me, because it took me a really long time to connect the dots.

I know that I’ve always had an extreme and involuntary reaction to unsolicited advice, some types of instructions, being told I said something I didn’t, or telling me what I am thinking or feeling especially if they interrupt me at the same time. I could control it in the sense that I keep it internal but my instant, internal response is “FUCK YOU (and run away)”. It’s been something that has made me feel a lot of shame and confusion because I had no idea where it came from and I always thought when we see “defiant” behavior in kids that it was a form of acting out because they didn’t have the tools to express their needs in a different way. Kind of like a meltdown? I didn’t understand why this was happening to me, especially because I can ignore 90% of the “demands” as I don’t have the same dependance as a child does on a caregiver.

I have learned that one theory is that it is an automatic nervous system response not a conscious decision (this is not in the wiki article). This makes a lot of sense when I think of my own situation. The idea is that a perceived loss of control is seen as a threat and PDA is a reflex to resist that. This has been really helpful in understanding some other behaviors I have that are confusing/challenging:

• challenges with eating or drinking. This isn’t refusing to eat or drink because I don’t like what is available or other sensory issues. I feel like I can’t make myself sometimes even if I am really hungry or feeling pain from dehydration. Eating can upset my stomach because it’s in fight or flight and not working properly in response to the demand that I eat. Bodies! So annoying!
• Trouble sleeping. Similar to eating, the moment I think “I should go to bed” my brain is like FUCK YOU.
• ETA: Not using the bathroom until I am done the task I am working on because FUCK YOU BODY WHY ARE YOU INTERUPTING ME.
• Meltdowns at being asked how I feel, what my plan for the day is, etc especially if I know the question is just a lead up to a request or if it makes me think of something I should be doing. I think this triggers it because they are taking away my autonomy to just respond to their request. Their request will change based on my answer and the assumptions they make around it. I also never know how to answer these questions because it depends on why they want to know, so it’s a lot for me to process and requires me to completely drop what I am doing to attend to. For example, I was in the kitchen Monday washing dishes and my husband who just woke up came out and said hi and then asked me when I was planning to go the lab for bloodwork (I had told him I was doing that). I could barely get out “okay, not now please” before I started sobbing. The really awful thing was if he just said, “Hey, we need to pick up [x] today. Can you get it while you are out (are you going to be done before the place closes)?” there would have been no negative reaction at all. I don’t mind being asked to do things and I like doing things for people! I was able to communicate that over text afterwards which was a win, but you can imagine how awful it must feel that your partner can’t tolerate you asking them about their day. Especially because this is a new fun autism trait that is showing up for the first time in our 15 year relationship. In this particular case I also think the question made me conscious of the fact that I had this thing I had to do and my body freaked out. I was in the process of getting ready to go out (putting my dishes away), it was just the connection to the demand that triggered it.
• Not being able to make myself do things, even if they are what I want to do. The really hard one is really wanting to spend quality time with my partner doing a nice activity together but not being able to calm down because everything in my body is yelling NO.

What triggers it and how bad it is isn’t constant. It’s just extremely bad right now. It’s a change from being in a constant state of panic and unable to do things because of that, so that’s … nice?

I have also come to realize that I have done this my whole life and I have just been tricking myself into doing things to work around it. I couldn’t eat unless I was reading as a child which of course was unacceptable, so it would take me forever to eat and I’d get in trouble for that instead. I still do this (or watch tv because I am an adult who can do what I want 😈) but now I understand I am distracting myself. I was very disciplined with exercise and would joke that I “throw myself out the door” in the morning and I very much would. It was like, "Oh, I am outside better get on the bike. I biked to the gym? Might as well lift some weights, etc. "

The kind of funny one is that I have no problem taking direction from people I trust and respect. If my current boss asks me to change the way I am doing something, 99% of the time I have zero problem doing it. I have no respect for arbitrary authority but I trust and respect her and am willing to do things the way she asks if my way isn’t what she wants. I don’t need to do things “my way” if other acceptable methods are possible. If someone who I think is incompetent questions the way I do things or tells me I am wrong (and I have confirmed I am not) it’s back to the old FUCK YOU. There was a lot more pressure to internalize that before but now that I’m fairly high up on the arbitrary hierarchy ladder I’m feeling less pressure to be nice about it if the other person is at my level or higher. More junior staff get grace 😅 because again it’s not about wanting to be right and needing to be seen as right. I’m also a very careful and obedient driver, but again I think traffic rules are good in the sense that they should make the road predicable, even if I think some of them are bad rules.

I hope that was helpful, let me know if you have any questions.