The following questions have been answered by Julia Daunt, who is an adult with a diagnosis of PDA.

 

Q. Did you struggle with recognising and expressing your emotions as a child, and if so what if anything helped you with this?

A. Yes, this is an area that I really struggled with, and still do to some extent. I truly believe that for most of my childhood, and certainly before my actual diagnosis, I was unaware/unconcerned about other people's feelings and how my actions could directly affect them. I've always known that I'm "different" and I've often felt very scared and isolated as a result and this in turn has made my behaviour worse. My way of dealing with negative emotions was to lash out or act inappropriately and likewise my way of dealing with happy emotions was over the top and, at times, bizarre. I was often referred to as "an overly emotional child". I'm afraid that when I was younger nothing really helped with regards to my management of my emotions and behaviours. I wasn't diagnosed until I was 12 and I have other conditions at play which also were diagnosed around the same time, so before this point there was no help or support for me but once the diagnosis came so did the answers as to why I had always felt "wrong" and with that came an awareness and an understanding that is vital. I realised for the first time in my life that I wasn't this "evil child" that I believed I was. With that level of understanding also came empathy, which until that point was something I had never really experienced. To date I still struggle with my emotions but it's much more of an internal struggle now. I tend to still be very "over emotional" at times too - I cry very easily and I'm also very quick to lose my temper. I think this will always be an area that needs monitoring, as it were.

Q. How has PDA affected your ability to make and maintain friendships?

A. Friendships have always been a massive issue for me for a number of reasons. As a child I really struggled with friendships. I was very overbearing with my peers and I seemed to "get on" better with much younger children. Most children were actually scared of me and as a result I wasn't invited to many parties and I wasn't picked for team games at school. At the time I saw this as them being deliberately cruel to me and I couldn't/wouldn't see that actually the issues were with me. I thought the world hated me and so I would often resort to befriending the less favourable children, ie the bullies, out of pure desperation on my part - anything was better than nothing. All friendships, when they did happen, were often very one-sided and were also very short-lived due to my need for complete control over situations and people but also because of my explosive personality and violent outbursts. Then the subsequent lose of these friendships caused me great pain, anxiety and upset. I did however manage to maintain a few friendships throughout my childhood but sadly we lost touch during our teen years, as tends to happen, but all of whom I have now reconnected with via Facebook which is lovely. As an adult friendships is still an area that I have difficulty with. I tend to over-invest in a friendship too quickly and I also tend to be truthful to a fault. I don't hide anything about my diagnoses anymore and I think some people see my openness and willingness to share everything with them straight away as a bit of turn off. I want people to like me but sometimes I don't see that it takes time to get to know someone and that you don't need to tell them everything within the first 30 seconds of meeting them! I have to constantly remind myself of this. I'm also far too trusting of people - I tend to assume that because I've told them everything about me and been 100% honest that they have done the same with me but unfortunately this isn't always the case and I've had my fingers burnt several times, both as a child and as an adult. I'm slowing learning that trust is earned and not just given.

Q. What sort of things do you find most difficult now as an adult; and is it different to when you were a child / young person?

A. I find the vast majority of day-to-day things difficult and I always have done, even the simple tasks that many others just do on autopilot. I don't let it stop me though if I can. Life is too short to let things stop you - well that's how I look at it anyway. I still put things off and leave everything to the last minute. I still avoid everything if I can. Delay. Avoid. Delay. Avoid. That's pretty much how my day goes but it's not a negative anymore. PDA is my positive, it allows me to be able to help others and I love that. I feel like I'm finally of some use to this world. I'm useless at time keeping, housework, shopping (I buy/spend too much), bill paying and managing money etc but between Paul and myself it all gets done, eventually. I still don't do anything at the "correct" time of day, like washing and getting dressed for example, but I don't let this bother me. As long as I wash and dress then that's fine and if I only do one of those things then who cares? As a child I think I struggled more with empathy, well my lack of it, and making and maintaining friendships as well as my violent and extremely volatile behaviour. Explosive meltdowns are very rare now and when they do happen the anger, frustration and violence is aimed at objects, like walls or doors, instead of people. Improved self-awareness, understanding and greater empathy means that I no longer see hitting someone as an acceptable way to conduct myself and it would take an extraordinary event to push me to that point now. My meltdowns tend to be much more internalised now and when I'm in meltdown I tend to completely shut down for a few hours or even a few days and sleep or chill out. Crying is also something that I find beneficial. 

Q. What do you think adults with PDA need from services like social care, or diagnostic clinics?

A. Well some support on offer would be a good place to start! I, and others that I speak to, currently have zero outside support unless we source and fund it ourselves. I have a lady who comes in once a week and cleans for me but this wasn't offered to me and is funded out of my own pocket. I currently cannot access "services" because I am "too able" - this frustrates me beyond words. I have had no PDA-specific help since I was 18 (I'm now 31) not because I didn't want or need it but because it simply isn't there! Despite my "independence" there is still a huge amount that I cannot do for myself and if I didn't have Paul then there is no way I could manage for long on my own. As for diagnostic clinics, it saddens me that there is virtually nowhere for adults to get PDA-specific help. This needs to change and needs to change fast. I've lost count of the number of adults, including myself, who have either had our childhood diagnosis overturned or just cannot get a foot in the door to much needed diagnostic services!

Q: Has having a PDA diagnosis helped you, and the other people around you to understand you better?

A. It's more than definitely helped me and those closest to me to a certain extent but perhaps not as much. When I was diagnosed you have to remember that there was even less understanding out there than there is now and services, like schools, just learnt as we muddled along. Sometimes we got it right and sometimes we got it wrong - that's just the way it was. I think the only big difference it's made is to myself and my understanding of me - that's where the real changes have been. I now see that I'm not evil and nor am I to blame for the way I am. I love me,  and I don't mean to sound anal but it's true, I enjoy what I do to help others, I enjoying growing emotionally and using my negative experiences to help others and I love the quirky side of PDA - never a dull moment! 

Q. If you were able to go back and change anything about your experiences in school what would it be?

A. That's a difficult question. 90% of my schooling was incorrect and the other 10% was made up as we went along. I guess though in an ideal world I would have to say that I would change the fact that I wasn't helped and diagnosed much sooner. Although this isn't entirely the schools' fault they all did have their roles to play in the delay, so yes that's what I would change.

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