Hello everyone! 😊 Sorry part 4 has been rather slow in coming but at least it’s here now – enjoy!
Melanie – I would like to know, do you look back on your childhood with fond memories? I wonder with all the problems that my son has is he truly happy and will his childhood will be tarnished by the problems he faces, and does it get easier as you get older?
This is a difficult one Melanie. I think on the whole that I was happy as child but I also have a lot of memories of some dark times. I also think that I remember my childhood with rose-tinted glasses to a certain extent. Perhaps because I was so manic and off my face with unmedicated ADHD I think that muddied the waters slightly and caused me to appear happier than I actually was but also caused me to be happier than I would have been if I only had PDA. I do have memories of feeling like a freak and an outcast. I do remember struggling to make and maintain friendships, which I still struggle with now. I can’t always read people properly and it’s led to me having my fingers burnt on more than one occasion. 😢 Also as an adult I’ve become so good at ‘hiding’ my PDA that I think people often forget that I have it and then when I do act strangely or say something that offends them they act all surprised or get mad at me. I’m not saying that I deserve special treatment or anything but it would be nice if people just tried to remember that I am different, that I don’t see things the same way as they do, that I might misinterpret things that they say and that when I do mess up that they remember that I have PDA. That’s all I ask. I don’t think that’s too much really.
Ruth – I am also wondering when and how you found out about PDA affecting you, and how you felt about it as a child/young person?
Even though I was diagnosed at age 12.5 I wasn’t really aware of PDA properly until I was about 26. It wasn’t really ever discussed at home or school so it just faded into the background. It wasn’t until I was messing about on Google one day and I typed it in and was pleasantly surprised at just how much information there was out there! I was stunned. I had always been told that PDA was extremely rare, hence why I hadn’t bothered to research it before, but obviously this information was wrong. I joined the then-PDA Contact Group looking for support, answers and others with PDA. It really was a lightbulb moment. I wasn’t alone anymore. I read up on PDA and realised just how much of my personality was down to PDA. I know there’s a clue in the title but I really had no idea, I just thought that was normal, if that makes sense. Up until a few years ago I used to hide the fact that I had PDA from everyone, partly because I didn’t understand it properly myself and partly because I was ashamed to say that I had an ASD. I’m now ashamed that I ever felt like that. 😔 I’m now proud to say that I have PDA and I don’t care who knows. I won’t hide anymore. 😃
Tracy – Have you considered having or do you want your own kids? How do you think you would manage?
There isn’t really a simple and straightforward answer to this question. I’ve thought long and hard about it and if I’m honest there were times when I was younger when I thought I might like children but they were only fleeting moments and I don’t have them anymore. I would say that no I don’t want children. It’s something that Paul and I have had conversations over and we’ve both agreed that it’s not something that we want. It certainly makes life much easier that we are on the same page! Don’t get me wrong I do like children but the whole idea of having my own fills me with dread if I’m honest, mostly because of the genetics involved. I know that the chances of me having a child on the spectrum are high and I wouldn’t want to do that to the child. I also don’t think I would be able to cope with the demand of being a mum. I barely cope with the demands of life as it is, let alone adding a child into the mix. Paul and I are happy as we are, neither of us has a yen to become mummy and daddy and we like our life together the way it is. I’m happy just to be an ‘auntie’ and Godmother – that’s enough for me. 😊
Andy – Did you ever hit out at your parents? Did you really mean it to hurt them and did you understand if it hurt them? That may sound strange but our 6 year old son often lashes out at us and it can hurt. Sometimes he’s not bothered and will laugh, other times when he has scratched/hit to where it’s obvious it’s hurt us he just stares at us kind of blankly and were not sure what to make of it.
I used to hit out at my mum, and other family members/friends, all of the time. I was extremely violent. I think there were times when I did mean to hurt them but most of the time I was just reacting in what was the only way I could react to a stressful or upsetting situation. There certainly were more than a handful of times that when I had been wronged or hurt by someone I did seek revenge by hitting and hurting them but like I’ve said this didn’t happen all of the time and wasn’t the norm. I would say that usually I had no idea of what I was actually doing when I was in meltdown. When you are in the thick of it like that other people just don’t matter. They can’t matter. It would be too much to bear to take on how your behaviour might impact. It’s pure survival-mode and certainly isn’t personal. It’s quite hard to explain so I hope this is making sense. I can really relate to your son looking blankly at you when he’s feeling like this. Sometimes it can feel like no one else is there. It often is confusing when we come out of meltdown. Very mixed feelings over what has just happened. Sometimes I remembered it and others I didn’t. More often than not I couldn’t remember hurting others so when I was ‘accused’ I would deny it and stand my ground. People used to think I lied a lot but it was more likely that I had in fact blanked out during the meltdown. Things are much better now. My meltdowns tend to not be violent but I am still extremely cruel with what I say. 😟
Nikki – I would like to know how a parent with PDA can effectively parent a child with PDA when they still have their own issues to deal with?
This is a difficult one Nikki as it’s not an area I have any personal experience in and nor will I. I think the most important thing would be support. People that I know who have PDA themselves and have children have all said that support for them and support for the family as a whole is vital. I guess this question will keep up as more and more of the PDAers grow up and start families of their own. I think more services need to be in place now to help those in need currently but also to make sure that the youngsters have the support we never had. I don’t think that having PDA needs to stop anyone from having a child. Sure it’s a hurdle and it might be tough but with the correct support why shouldn’t it be possible. Not having children is a decision that I made a long time ago and it’s a very personal choice/everyone is different. I know for a fact that I wouldn’t cope without a ton of support. I would like to think that should I ever change my mind that support would be available but currently it isn’t, well not at the level that many I’ve spoken to need. This has to change. The lack of support across the board is sickening. I hope this answers your question. X
Debbie – My question is about adult diagnosis and how do you cope with knowing you have PDA but not having a formal diagnosis and having a condition that is not very well known. I’ve spoken to health professionals who haven’t heard of PDA so therefore will not accept the condition is real how to you deal with that?
I do have a formal diagnosis Debbie but I know plenty of adults who don’t. Speaking to them it’s very upsetting, knowing you have a condition but not being believed. A diagnosis is vital, at any age, because it’s complete affirmation – you aren’t nuts, you cannot help the way you are, you aren’t an evil freak of nature who is destined to live life alone and that there are others just like you. It’s validation. It also means that society, on the whole, will take you seriously when you say you can’t rather than just looking at you with that “oh come on” expression. I tend to only spend time with people who understand PDA, either because they have it or someone they know has it. I’m finding that the ‘neuro-typical’ world holds less and less for me the older I get. It’s too much effort to bend and shape to fit the preconceived ideal of normal and I won’t do it anymore. I can’t. Of course I do NT things and I can and do behave correctly in social situations and I don’t have a problem following the rules/laws but I’m talking about changing who I am just so I can be accepted by friends. It’s not happening I’m afraid. I’m tired of being fake. It’s like living in a permanent state of role play. This is partly why I can’t work. It would be exhausting and I know I couldn’t cope. No one could keep up the level of pretence that is needed for me to live in the NT world. It really pisses me off when so-called professionals say PDA doesn’t exist etc just because they’ve never heard of it before. I can’t help but take it personally when they say that. It feels like they are rejecting everything that makes me, me and yes that does hurt. I know it’s crazy but that’s just how it feels. 😕
I hope you’ve found this helpful and that it’s given you a bit more of an insight into what it’s like to have PDA. 💜
Follow the link to read parts 1, 2 and 3 of YOUR PDA QUESTIONS ANSWERED