Managing life

Lots of us autistic people find it hard to prioritise activities that seem less important. We can be less concerned about what people think of us, may have sensory sensitivities and generally want to spend time doing the things that interest us most. As a result, washing, putting on clean clothes or eating a variety of food can often be things that don’t bother us so much.

As a PDAer, I have all the same reasons for not being bothered to look after myself particularly well, but I have this added extra barrier … a brain that says ‘you can’t do that, it’s just not something you should do’

Managing the numerous things that make-up ‘everyday life’ is one big headache if you have PDA. If you get anxious about going shopping, cooking your dinner, washing or making appointments, just because they are things you ‘ought to do’ … it is not easy to get around.

Here are some of the ways in which we are able to get by, and what happens when we don’t … and also please see Self-help, coping strategies and therapies for adult PDAers

Riko: I actually have no problems organising my life, I just have trouble actually doing the chores, I know what to do and how, I just can’t seem to get started. I procrastinate a lot. Things have to be done a set way too, and perfect, so things take too long and there never seems to be enough time to do them which also puts me off starting. I’d much prefer to play games or watch TV, but sometimes they become a demand and I end up tidying in order to avoid hobbies instead. I generally only aim to do two things every day, aside from the usual dressing and eating, but if I don’t do them then that’s fine, if I do more then that’s great. I still struggle with feeling like I’m not doing enough but this has greatly reduced.

Julia: My anxiety bucket doesn’t empty naturally (or if it does it’s very, very slow). I never want to get to the point where it’s full as then my cognitive ability becomes too impaired and I can’t cope. In order for me to be an adult for a full day (like when I attend a conference) I have to do nothing (literally) for a week beforehand. I don’t dress or wash or cook, I have no social interactions, I don’t do any of my hobbies. I sit on the sofa and watch TV. That way my anxiety is nice and low. I need another week’s recovery time afterwards. If it involves an overnight stop, it’s also a huge sensory as well as social demand.”

There are limits on what I can do – so if I want to be washed and dressed something else has to be dropped. I shouldn’t be annoyed by this but I am. I do feel bothered by what other people think.

Sally: For me, I do want to look nice, smell clean and have a tidy home – I care about what others think of me – but my demand avoidance makes personal care and housework feel like unpleasant time wasters that I want to avoid.  

In coming to understand my PDA, I have learned not to feel so guilty about the many things I don’t do and to reduce the number of demands in my life.  I’m a lot happier as a result.

I discipline myself to carry out a few basic chores every day (e.g., making the bed, hoovering the living room and cooking dinner).  Doing these chores requires me to suppress demand avoidance, which is tiring, and I only have enough energy to suppress it enough to do these few things.  As it is, I need a lot of downtime to recuperate my energy.

I am grateful my partner is supportive of me and does a lot of the housework himself.  We have a young PDA daughter as well.  She is lovely, but really overloads me, and I am so thankful that my partner is very patient spending time with her so I can have the downtime I need.

If I don’t have enough downtime; if demands I can’t avoid are piled one on top of the other without enough time to recharge (such as when traveling or staying with other people) I kind of shutdown and can get physically quite ill, like I’ve got flu. I am more likely to meltdown like this when I’m tired because my mental elasticity is used up and I feel overloaded and brittle.  I just need quiet time on my own to do nothing and recharge.

I find some routine helpful (so long as it is not imposed).  Routines, even short ones (like making a cup of tea), put things into autopilot so I don’t have to think about them and they are, in my head, just one demand.  I like novelty, but new things are exhausting because they’re not “autopiloted” and all the individual demands involved scream out at me.

Tony:   I would imagine that I am hardly the only male with PDA that has the need to sometimes break the rules, and that can come with consequences. The point of breaking the rules is to sneak something so that I am reassured I am really the one in control of what I am doing. Sometimes I would misappropriate something from the workplace. The point was not that I wanted the item. PDA did not make me steal. Taking the item was a (poor choice of) coping mechanism to let myself feel as though I “got away” with something and was the one truly in control of myself.

My girlfriend went on vacation for two weeks so I bought a pack of cigarettes. I don’t want to smoke, it’s bad for my health and ridiculously expensive. The point was not that I wanted a cigarette, it was that I needed to sneak/get away with something and chose something that was a “minor offence” in the context of our relationship to fulfil the need to feel that “only I control me” which seems to be pathological in me – my girlfriend is not even a little bit controlling so it has nothing to do with her.

Now, I consider myself lucky that I have almost never been caught as an adult doing this (though I was caught all the time as a child,) and I wonder… How many of the diagnosed PDAers, males in particular, have made similarly poor choices in coping methods that have landed them in prison? I have never been, but I can see how under certain circumstances and without my level of introspection, an adult scale meltdown could very easily end up in incarceration, especially for early-twenties males.