Over the past few months many of you have submitted questions to me and in this post I’m going to try and answer them as best and as honestly as I can. I hope that my answers will give you a little bit more of an insight into PDA, and in turn your own children, but most importantly offer that ‘ray of hope’ that we all seek, so here goes nothing….. 🙂
Carolyn – How does your attitude to being told to do something differ from when you were a child?
My reaction depends on so many different factors like my mood at the time, who is demanding something of me, why they are doing it and how often they’ve made demands of me before. All these factors, and more, play a role so this is a difficult question to answer. If it’s a ‘needed’ demand like hospital staff telling me what they need me to do or what medication I need to take then I’m pretty good at following orders because I know that it’s for my benefit and wellbeing in the long run to comply but I do have to make a conscious effort to suppress the anxiety and I’m not always successful. If it’s a friend or someone in need then I’m often able to push that anxiety down and do what ever it is they ask of me but again not always. If it’s an unfair/unwarranted demand then I simply react by saying no and refusing to budge. People tend to give up at that point but I guess if they were to continue to make the demand then I would have to remove myself from the situation or it might get out of control. Some days though all demands are simply too much. Demands, on the whole, are easier to deal with now I’m an adult because naturally I have far more control over my life than I did as a child. I still cannot cope with being lectured or having a long and ranting list of demands reeled off at me. If you want me to comply ask me nicely and you are more likely to get the desired result. 🙂
Tom – I’d like to know about the transition period – i.e. moving out of the family home and setting up independently. How was this planned for? What support did you have or need during and after the move? What parts were hardest? and what would you do differently if you could do it over again?
I currently live in the annexe to the family home with my partner. I did move out once for about a year when I was 17 or 18 with my ex but we had to return to the family home due to him running up a large credit card debt and me being miserable as a result. As far as I can remember there was no planning on the part of my mum. At that point I was independent and able to make my own decisions and choices. The idea of the annexe was so that we could reduce his debt rather than forking out £400+ a month on rent but he left me less than a year later because he met someone else but thankfully he took his debt with him. 😉 I then remained in the annexe and then I met Paul and he later moved in with me. We’ve been together for nearly 10 years now. We have considered moving and in fact we did move to Wales for 2 days in 2013 – yes, 2 days! We had to return because the property was damp and none of the works that were meant to have been carried out before we moved in had been. We are currently still trying to get our money back. 😦 Although we live in the annexe we live independently. We manage our own money, bills, cooking, cleaning and lives. The whole living next door to mum and dad thing is by no means perfect and we do have rows like all families but on the whole it works well for all of us. The ‘move’ to Wales has left a nasty taste in my mouth but perhaps we will try it again one day. The act of moving is a nightmare! I hate not knowing where my things are. I have to make a list of what is in each box otherwise I would go mad! 😉 It’s safe to say I hate moving, but doesn’t everyone? Perhaps it’s worse for me because the process of finding a new place to live, organising and planning, packing up an entire house and then setting it up again at the other end all leave me feeling pretty helpless and out of control and that isn’t a feeling I can handle. I just had to focus on the bigger picture. Paul had never moved a whole house before and he needed me to be strong and organised. You see when he moved in here with me he moved out of his family home so our ‘move’ to Wales was his first ‘proper’ move. I also think that my stepdad being in the RAF/MoD helped as we had moved quite often when I was child. I’ve moved 10 times in total, which isn’t a huge amount, but it’s enough. Neither one of us could handle doing it again yet. I hope this makes sense – it’s a bit of a ramble. 🙂
Gillian – Why does anxiety rule your life?
That’s a great question but I also think it’s an impossible one to answer fully. You see to me feeling anxious over demands is as normal a reaction as crying when in pain or laughing at a joke. There’s no explanation – it just is, it always has been and always will be. We are hard-wired to become stressed and anxious when demands are made of us – this is just the way we are made. Now I’m not saying that because it’s always been and always will be that I’m happy or comfortable with the high levels of anxiety I feel but there is very little I can do about them. All I can do is try to reduce all unnecessary demands so as to keep my anxiety at a manageable level but it wouldn’t take much to push me over the edge. A scenario I’ve used in the past is this: you and I are both given a bucket and someone keeps pouring in equal amounts of water (demands/anxiety) into each bucket so consequently the buckets begin to fill up, the only difference is that your bucket has tiny holes in it so it never reaches the top and spills over unless the water in was to become greater than the water out. My bucket doesn’t have these holes and so can therefore only ever spill over so I must try and reduce the water in so it doesn’t overflow but at some point my bucket will be full and I will go into meltdown. That is a fact. It really is a daily balancing act. Some days are better than others. I’ve accepted that I have my limitations and that’s okay. I’m not perfect but then who is! 😉 I hope this makes sense and helps. 🙂
Annie – How do you control your anxiety and what do you do to prevent a meltdown?
I think I’ve answered part of this in the above question but I can elaborate further. Every day I must make choices on what ‘demands’ I can cope with. On a bad day that might mean that even brushing my teeth is a demand too far. If I am having a bad day I just do what I can and I won’t push myself because if I do it will just make things worse. If I’m having a good day then I am able to push myself and I will have a fairly ‘normal’ day. There’s really no way of predicting when I will have reached my limit or when my bucket will overflow to carry on the analogy from before, I just have to be prepared that it will happen at some point and I need to deal with it when it does. What I find interesting from speaking to parents is when they say “we only asked him/her to brush their hair and they went into a 3 hours meltdown” – you do realise that the hair brushing demand was more than likely simply just the straw that broke the camel’s back. It was the trigger for the meltdown but it wasn’t the cause. 9 times out of 10 the cause of my meltdowns is an accumulation of stress and anxiety and not one particular event. My meltdowns tend to be far more internalised now than when I was a child. I tend to cry, switch off and sleep a lot when I’m in meltdown. The only way I can reduce the chances of having a meltdown is to reduce my triggers and if I am in a stressful situation, like Morrison’s on Christmas Eve, then I simply walk out and sit in the car because if I had stayed then I would have completely lost it and I couldn’t face doing that in public. I think I would die of embarrassment! I haven’t had a public meltdown for about 15 years and it’s not something I’m prepared to go through again if I can help it.
Hazel – Are u really happy, as in within yourself?
Yes, on the whole I am very happy. Of course I have times when things are hard and sometimes I feel like I can’t go on but thankfully I don’t stay in that dark place for very long now but it is a place I visit from time to time. I also have times when I hate PDA because of how it limits me and makes me feel but I just try to muddle through until I come out the other side. I am incredibly lucky – I have a great partner, a great family, on the whole, and a great group of friends who keep me ‘up’ when I need it and who don’t ever judge me when I need time out and can’t do what I normally do or what is expected. They just understand. It’s a shame there isn’t a bit more of that understanding in this world. What makes me happiest though is helping people and I feel blessed to be able to do so – that makes it all worthwhile and gives my life some focus and a purpose. 🙂
Lynsey – What has been the most influential factor in your life that has helped you cope with PDA and lead a more ‘normal’ and happy life. E.g. a particular therapy or activity? Have you had any epiphanies that have led to you being able to cope more and if so what were they? Are you able to work/hold down a job when you are not the boss? What types of friends suit you, how did/do you overcome the barrier faced by PDA kids/adults to adhere to ‘normal’ social rules? Does this seriously affect you as you get older or can you learn to cope?
Wow, where do I begin! 🙂 Well I guess the most influential ‘therapy’ I ever had as a child was my outreach worker, Ginny. I used to spend Fridays with her. She taught me to cook and encouraged me to be more arty. She really helped to rebuild my confidence and self-esteem that had all but been wiped out by years of feeling like a freak, endless public humiliation due to my behaviour and being expelled from school. I’m still in contact with her now. She’s amazing. 🙂 I would also say that Paul has been an incredible source of strength for me. He’s made me see that it’s okay to be me and that I am loveable just the way I am. 🙂 I have tried conventional therapies, such as CBT, but I found them no use whatsoever. I guess it’s an individual thing and will work for some but not for others.
The biggest ‘epiphany’ I’ve ever had happened a few year ago. I was still keeping my PDA secret from the masses and I just decided to google PDA and ‘ting – lightbulb moment!’ – I wasn’t alone! You see I had always been told that PDA was so rare and that there were no others like me! Oh, how wrong they were! So I cried and then joined the PDA Society, or the PDA Contact Group as it was called then. It was amazing! I felt so empowered! I then decided that I had a sort of duty to share my story but I also wanted to find other adults with PDA so I set up the Adult PDA Support Network on Facebook and waited and slowly but surely adults with PDA joined! 🙂 It’s snowballed from there really. It was my friend Jane who gave me the push and inspiration to take to blogging and public speaking so we have her to thank for that. 🙂 As far as coping better goes, this had naturally happened over the years, despite me keeping my PDA a secret, and so has always been an area of continual progress and improvement.
Work…..there’s an interesting topic! I’ve never worked. I’ve volunteered in charity shops and in playgroups and I’ve done odd jobs for friends. I’ve also had a market stall twice before selling my hand painted glass and then my handmade cards. I’ve also been a Body Shop at Home rep. I’ve tried to dip my toe into work but it’s something that I don’t think I will ever be able to do as it causes me way too much anxiety which leaves me unable to function on any level. It’s just not worth it. I used to beat myself up about it but not anymore now I’ve found another way of being a valued and productive member of society. I’ve realised that it isn’t so bad. I do have a lot to offer after all. I’ve finally found my place and it feels great! 😀
I get along with most people but since my ‘epiphany’ I tend to gravitate towards people who have a link with PDA already. I also found that once I told my existing friends most of them said ‘yeah and?” and just accepted it and me. I did lose friends when I went public with my PDA though. That was extremely painful at the time but if they were really my friends in the first place then they would have least tried to understand and not cut me out of their lives completely. As far as childhood and friends goes that was an interesting time! I only had a few friends that have lasted throughout childhood and I wasn’t invited to parties often. I was a volatile child so most children tended to be extremely wary of me and keep me at arms-length. I should add that for most of my childhood and early teens *ALF was my best friend and I acted as if he were real. I went everywhere with him, told him secrets and would become upset when people didn’t say hello to him. Interesting how I wrote “I went everywhere with him, rather than he went everywhere with me!”
I can comfortably follow normal social rules now but that hasn’t always been the case. It’s just something that has happened slowly over the years. A case of trail and error. I have found that as I’ve matured and become self-aware that my social skills have evolved from purely self-preserving and self-motivated social skills that I used to evade demands and expectations into real and proper social skills. It’s funny because now I’m a stickler for following the rules socially – I can’t bear it if people are rude and impolite. I’m also a stickler for following the letter of the law although I always have to just put one toe on the grass when the sign says “keep off the grass” and I always touch to see if the paint really is wet! I just can’t help myself! 😉
I hope this has been helpful, informative and has opened a few more eyes to living with PDA. I’ve thoroughly enjoyed writing it and hopefully I will be doing a few more posts like this over the next few days and weeks.
If you have any questions you’d like me to have a go at answering then please contact me and helpfully I’ll be able to help. ❤
*This is ALF. He’s still really important but not in a Norman Bates way anymore! 😉
Read part 2 now! 😀
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Reblogged this on Pathological Demand Avoidance Syndrome an autism spectrum condition and commented:
This blog post from Julia Daunt, an adult diagnosed with PDA at the age of 13 by Professor Elizabeth Newson, is so informative, insightful and a must read for anyone either caring for or working with an individual with PDA!
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Thanks for the reblog hun! 🙂 x x x
Brilliant stuff hun, fabulous answers and a great read.
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Thank you very much Jane, coming from you that means a lot. 🙂 x x x
Thanks for this Julia, it gives a real insight and is so great to read. Helps me understand my little girl a bit more and I can only hope she turns out as well as you have done 🙂
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I’m pleased Steph. Thank you for your lovely comments. 🙂
Reblogged this on AutismAmazon and commented:
The lovely Julia at Me Myself and PDA gives us an insight into living with PDA
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Thank you so much for the reblog! 🙂 x x x