PDA?- I had no idea this was me…

PDA – as known as Pathological Demand Avoidance. From everything I have taken from receiving a late diagnosis to be told that I have PDA, I am a PDAer has shocked me the most.

I must admit, I had heard of PDA and even thought that my children showed signs of having it but for some reason never related it to myself until I had my assessment.

I finally decided to gain my diagnosis after a visit once again to my GP back in 2020 – just before Covid hit hard and explained once again that I was not coping with the daily anxiety I was feeling. Living with feelings of constant dread and anxiety is so wearing, and over the years it has really started to take its toll. I have lost count the amount of times I have seen a Doctor and asked them the same thing “why am I anxious all of the time”?, even when I do not appear to have anything to be worrying about.

I saw a wonderful Doctor who finally listened to me when I suggested that I thought I may be on the Autism spectrum, given my history and the fact that all three of my kids are autistic, well one has a definite diagnosis as I have said in other posts and my eldest daughter who is 27 is aiming to follow the route I took as she believes she is too.

The Dr said to me that I could see someone through the NHS however this would take some time – those that know will know that waiting times are horrendous not only for adults but for children too. I think I had waited long enough and my high levels of tolerance had finally peaked.

I said that I did not want to see a Psychiatrist as the whole thought of it was adding to my already anxious state – I was anxious as hell (although you would not know it) even talking to her about it , I am the master at hiding how I feel, even when I am in a high anxiety state. To be honest it was so easy to just walk away that day but I am glad I didn’t as she said something that made so much sense. She said, if we could afford to do it I should seek a private diagnosis, but a diagnosis only. ” You do not need therapy, just the diagnosis” – that was the part that made most sense to me. It was a relief to hear this after so many years of being offered counselling, CBT, private coaching, medication etc all of which had little or no effect for me (this may not be the case for other people on the spectrum) but for me just never seemed to work.

And with that, me and my partner (now husband) left her room thinking this could be the way forward, finally.

It took me around 18 months to find the courage to do something about it. After all the ball was now in my court, I had the control I wanted, no unexpected phone calls about an appointment that would freak me out, It was all down to me to get this thing moving.

Every time I thought about it my stomach would churn – I let these feelings and thoughts drag on for all of those months, and I hadn’t even found anywhere to go. I had done some searching on the internet and plucked up the courage to make a feeble phone call to a private clinic to only be told that their waiting list was over 18 months too! Arhhh!!!

Part of me was relieved as I had convinced myself that I had made some progress by making the call and merrily said ” yes please do add me to the never ending list” in the hope again that I would not actually see anyone. I asked the pleasant lady at the end of the line ” can all of this be done via Skype now as we are in the pandemic”? She said ” Oh yes, you will see a triage but then to get your diagnosis you will need to see a Psychologist”. – Oh, Ok, thanks I said. And with that I hung up and thought this is never going to happen …

But, it did. And kind of accidently. Aside from everything else I am the Co Founder to our wonderful charity and so only use social media for that purpose – and now this website, and had written something about women on the spectrum and the lack of support/information about when you get older, and start ” changing”. I have, over the years been doing lots of research about autism and had it in my mind that I could be autistic. The thing about being perimenopausal is a separate concern of mine, and no doubt now a future post, however to get back to the point a Facebook friend came forward and we had a bit if a discussion, mainly about how I feel and we ended up privately messaging each other and discussed how she had got her diagnosis. She so kindly gave me the information as to where I could get mine, and to be honest I almost didn’t take the steps to do it, but so glad that I did, and forever grateful to her for giving me the place to go to.

If I hadn’t had put that post on Facebook and the kind friend come forward I may still have been avoiding doing anything about it.

And so, November 2021 I had a 4 hour assessment, going through my whole life and difficulties, of which there are and have been very many. I told of how I wanted to leave home at the age of 4 as I can recall how I felt – not being understood, angry and irritable. I even packed a small jungle printed suitcase and said I was leaving. I also recalled how I would have frequent meltdowns and tantrums, and had high levels of anxiety – even at such a young age. I also mentioned that I have a letter of which I had written when i was only 8 saying that I wanted to kill myself as I wasn’t getting what i wanted. Now to the outsider I may seem like a spoilt little brat but what was actually happening was I was not getting my needs met and this behaviour was a desperate cry for help. I wasn’t able to express or explain how I felt in any other way.

It was at this point within the assessment that she said my childhood showed a typical demand avoidant profile, which took me back a step. Not long after that revelation we had a break in the session and I remember popping my head into the room where my Son and husband were saying” She said I have PDA, she is sure I do, from what I have told her”. This was later confirmed when I had a meeting the Psychiatrist – who I was petrified of (all via Zoom)

To finally convince the lovely professionals I had also described how I would mimic others behaviours and spent my entire childhood role playing in the mirror, pretending I was someone famous, and believing I was them. I would also use this in situations to cope if I couldn’t manage. I would also mask how I was feeling really well, as I said , I still do. So I could appear to be fine on the outside but inside be falling apart with high levels of anxiety.

For most of my life I feel I have been misunderstood. Gaining the diagnosis of Autism and the subtype a PDA profile is helping me to come to terms with my lifetime of struggles.

To give you an idea of what living with PDA feels like, its has been described by other PDAers as trying to face your phobias every waking moment, as you live in a constant state of anxiety, even when you are not being threatnened.

For me, it explained why I feel anxious all of the time, and for what seems like no apparent reason. I am slowly starting to come to terms with it all, but have moments of great sadness. I guess more for my childhood and younger self as I just wished that my parents had supported me more and understood me and pushed for a diagnosis when I was being studied at the age of 14 ( I was under St Thomas’s Hospital as I had chronic eczema – they thought I had lupus but were baffled as to what was wrong with me – I now know it was a stress reaction) but I do also understand that autism and certainly PDA were not well known when I was younger so it was missed or not considered. I do sometimes wonder how I have got this far with the feelings I have as there have been so many dark times when I have not been able to cope and been totally alone.

There is so much more I have to share, not only about autism and PDA but my life and how I have been taken advantage of, even by my own family but that’s for future reading.

I will be doing an article about what PDA is in more depth. But before I end this read, just so you know, and this is something I only found out through my diagnosis, all people who have PDA are autistic, but not everyone who is autistic will have a PDA profile. Confused? Ha, ha, i will share more about the two diagnosis’s another time to enlighten you.

Thank you once again for reading šŸ™‚

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