Our PDA Story {Week 26}

Onto week 26 of 'Our PDA Story' - this is the series where I am sharing all sorts of different experiences of living with Pathological Demand Avoidance.

This week's account is from another autistic adult. I think it is so enlightening to hear how adults are living with it - those of us who are parents of children with PDA know that they will grow up to be adults of course. It doesn't mean we know exactly what our child's life will be like, but it does help to see a bigger picture.

Please do leave comments of support if you can, and share the post so that others get to know that Pathological Demand Avoidance is very real...

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I am a 28 year old woman with high functioning autism. I work and live independently and regularly need help from my partner and coping mechanisms I have created. I am not diagnosed PDA but have struggled with it for as long as I can remember. In fact, I currently have a pile of letters looking at me waiting to be opened.

I never knew that there was a term for this kind of chronic avoidance so always put it down to seriously extreme anxiety. It’s kind of nice knowing it may not be something I can change and therefore can stop beating myself over it all so bad. Historically, medically, I have always been diagnosed with depression and anxiety – growing up was chaotic, but ‘lucky’ for me, when I got my autism assessment done, some of my behaviours as a child were extremely autistic, we were able to decipher what behaviours were autism linked and what behaviours were anxiety. I struggle to process emotions like NT’s and struggle to put my feelings in to words, so whenever I have seen a GP, I was never believed or too scared to tell them the extremity of what’s going on. If you tell someone you self harm, professionals tend to lean towards me being depressed and suicidal. If you’re already suicidal, you get refused help from the support services. If you don’t look suicidal enough, you get refused help from the emergency services. Before I knew I was neuro-diverse, I never had the correct terms to use to explain.

I don’t really have any friends. I seem to have an internal kindness counter and if my efforts are not reciprocated I become very upset and felt used and shut down after a little while. The friends I have had have diminished as their invites stopped coming. Even though I didn’t go to a lot of them, it still would have been nice being included in the invites. But then, these days I don’t mind anymore. I am feeling like happiness is found within loneliness for me. A part of that is knowing I loose a lot of energy through anxiety over invites these days.

My job and partner keeps my social side balanced. To be honest, my experience with friends has always be traumatic. I find it makes me feel weird when they become close. Some of them have been similar to controlling relationships and others become obsessed with me and over compliment me and it makes me feel weird.

So far this email has taken me 1 week and 3 sittings to do. It’s not because I don’t want to do it. There is almost an internal pulling not to do it else my life depends on it.

I was talking to my partner last night about completing this email today and he reminded me that to reduce my PDA and anxiety, I keep lists. Lists of everything. Sometimes I forget my lists and loose control of my life and eventually have crippling anxiety. Then I remember to do lists again. I still also, after 1 week, have that same growing pile of letters.

I ignore my phone. It can take me from 5 minutes to 5 weeks to respond to an email, message or call. Again, it’s this internal pulling to not do it, else something serious will happen. It kind of spirals from a pulling to a complete adversary of doing anything like it. I can’t have more than 25 friends on Facebook (when I have Facebook). I find all the notifications overwhelming. Otherwise, I can’t really juggle social media. I only have Facebook so I can keep my support group open for Women with Autism/Aspergers.

Every each and one demand of life takes a part of me.

Imagine we are vessels of energy and each thing you do and each thing you are expected (but may not do) to do takes some of that golden energy. So a normal day, food, shower, house chores – that’s most of your energy gone. Then it’s your turn to use energy to filter out the deprioritized demands. That’s all the energy gone. So by the time everything’s completed – There is nothing left to give. Personally then, I feel cheated on by life. I feel a lot of remorse over my energy levels because I could have done better things with my energy than those of social expectations of a 28year old. Then, because I do things to a high standard and come across as willing to help (not wanting to disappoint people), People think I LIKE helping and keeping busy. So ask me to help with normal day to day things – I can’t juggle it. I feel like they are trying to steal my energy from the vessel that I no longer have. This has caused rifts with relationships throughout life, because, despite my efforts of trying to explain myself out of the ‘extra’ work, people persist. Face front, I look okay, but I’m usually internally melting down if I am already having to explain myself out of doing things. My partner has the full impact of this; all he wants is near to a healthy sex life at least. That, I sometimes can’t provide without a meltdown.

Sometimes a blackout and fully melt down. It’s like a mist descending, like a possession. Like my being shutting down to the possibility I should do something. I have never known why either. I used to put it down to spiritual things but now there appears an explanation and now I can manage it a bit better and be kind to myself more.

I keep a diary and if I am ‘on it’ I can usually feel a busy time coming and will prepare with visual prompts like notes on a cork board or my weekly white board. I’m not on ‘regular’ medication anymore, but when I was, I had to use my phone Apps in regards to making sure I take it.

I set days to do my phone calls. Unplanned phone calls can be a nightmare for anxiety – so if there are calls to make, I set a day aside to conquer them all. I usually do my post these days too.

I understand if I don’t do my job, I don’t get paid, therefore at risk of debt – so I am able to expect to do things I don’t want to do there. Sometimes there is a lot more throwing of me about at work on to different tasks and I have found those days I will meltdown. I am currently waiting on a staff review to discuss this.

If I meltdown or if I had to put energy into things I didn’t know I had to do; like take a call, it can be very tiring and distressing. The only way I have been able to compare it to loosely is the similar kind of fatigue after a seizure. I just need to sleep. It’s like that activity literally takes all my energy away.

I HATE BIRTHDAY PARTIES. OH MY… I hate all the attention being on me for no reason. I mean, if I did something well at work, tell me I did it well. But the kind of glorification that comes with praise and that kind of attention makes me feel embarrassed and ashamed. I don’t know why. I just can’t handle it.

In fact, I can’t handle most things. I just plod along having semi regular meltdowns still trying to nail that expectation of me against this internal pulling. Which means I have peaks and troughs in health. I don’t know where to get support from or help. My GP has only just now slotted things in place that I’m ASC, so I’m reluctant to believe she will know what PDA is.

I just want to be able to be happy and putting my time and energy into lovely things and not having to always recover from everyone’s expectation for me to exist.

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Thanks for taking the time to read. What would help immensely would be if you can share this post further; in groups, on Facebook or Twitter, any way you choose. Just one more person reading who may not have otherwise seen it could make a big difference.

Please do leave any comments of support below; for more reading about what Pathological Demand Avoidance is, please check out my blog post 'Challenging Behaviour and PDA'.

PDA can often be mistaken for ODD (Oppositional Defiance Disorder); my most read post explains the difference between PDA and ODD.

To look back on previous examples of PDA told on my blog, please choose any of the posts highlighted in this list: This is our PDA story.

If you feel up to sharing your experiences with my readers to help spread understanding (this can be anonymously), please email stephstwogirls@gmail.com.

The PDA Society webpage has plenty of further reading, and a great variety of resources can be found on the PDA Resource website.

The PDA Society are holding a PDA conference in Birmingham on 18th April 2018. The keynote speakers are professionals with a vast knowledge of PDA.

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?