Me, Myself and PDA

I know it’s only been a few days since I posted up part 5 but I had such an amazing response when I asked for questions that a part 6 was a must! I’m currently working on a part 7 too! WARNING: contains swearing. 😇

Nicola – My son seems to have an issue with personal space. He is always complaining about being bumped when no one else has seen it but he gets too close. Do you have this tendency too? I am not quite sure how to help him with this – the “there, there” approach doesn’t work at all!!

This question made me smile – not because it’s funny but because it could have been written about me! As a child I was very “in your face” – I had no concept of personal space and was always invading other people’s. I can’t remember if I complained about people bumping into me as a result of this but I would imagine that I did because, at times, I do that now. I’ve always been a “physical seeker”. I love touch. I love hugs. Paul has to wingle (my word for tickle) my feet every night before I can get to sleep. Oddly enough though I can’t bear it when people invade my personal space, like in busy public places when they stand/sit too close but this also sometimes happens when people I know well sit too close. It all depends on how my anxiety levels are at the time. I don’t really know what to suggest regarding how you can help your son because I’ve never had any help myself for this side of things. Perhaps you could ask your doctor to refer him to see an Occupational Therapist? This is something I’m looking into for myself too. I’m just sorry I can’t be of more help. 💜

Karen – Did you swear much as an 11/12 yr old in anger? If so, any suggestions as to try and reduce it? Also, my son is often talking about killing himself and wishing he was dead, do you have any advice that can help with his low self-esteem?

Firstly huge hugs to you Karen. 💜 Yes I did, and still do, swear an awful lot and not just in anger or meltdown. I think it started before I started school with the odd word but as I matured the swearing increased. I would tell teachers, and just about everyone else, to f*ck off, for example. I don’t really know what to suggest for strategies to help reduce the swearing – remember any suggestion of “let’s try and use a different word instead” might be met with avoidance. I know this doesn’t make it okay but a lot of people with an ASD swear more than I would say is the norm, especially those with PDA. I use swear words not just in anger but as descriptive words to add emphasis to something, ie. f*ck me that cake was nice or that was a f*cking good film – I do this without even realising it. I can now hold back from swearing if I’m around someone who finds it offensive or if I’ve only just met them so I guess that’s the only positive I can give you – I’ve learnt to monitor it, but this isn’t the case when I’m angry I’m afraid. To answer the last part of your question all I can say is that feelings like this are pretty common for people with PDA. I’ve had similar feelings myself, especially as a child. I think it was partly down to feelings of guilt over my actions and behaviour, feeling like a freak who couldn’t fit in and huge issues with feeling like a failure but I also think that the way I was “mismanaged” for such a long time played a big part in these feelings of worthlessness. Even though I was very much loved as a child and my mum did her very best she didn’t know about PDA so therefore the strategies she, and others, used were the wrong ones. My advice to you would be to talk to your son about PDA as soon as you think he’s ready to know. Be as open as possible. Keep it positive though and try to avoid using sentences like “there’s something wrong with you”. Try to focus on the positives as much as the negatives. Make sure he understands that he’s not alone and that it’s okay/not wrong to feel the way he does. I know that might sound odd but those feelings are very real to him and simply telling him that he shouldn’t feel that way isn’t going to help. As children we often experience some very adult emotions and feelings, especially when it comes to realising we are different. The trick is to get him to a place where he sees that difference as a positive. You might also want to get a copy of Ruth Fidler’s new book – Can I Tell You About Pathological Demand Avoidance Syndrome? It might not be something that he’s interested in reading just yet but it would be handy to have it on standby for when he is ready. If you feel he needs to talk to someone then he can call the Samaritans. They take calls from children too. If you are concerned in anyway that he might act on these feelings and thoughts then you must seek medical help/advice. Hugs to you. 💜

Maria – Did you always remember your meltdown as a child? Do you remember them now if you still have them? How did you feel after them? I’m trying to get inside my daughter’s head because she is not speaking at the moment but when I ask about them she looks blankly at me as if she can’t or doesn’t want to remember or she screams at me so I stop asking.

That’s an interesting and difficult question to answer Maria. Looking back I would say that about 50% of the time I didn’t remember my meltdowns at all but I couldn’t say with any certainty that that was because I couldn’t actually remember them or because I had blocked them out, or perhaps it was a combination of both. Maybe it’s a bit like the “red mist” that you hear the perpetrators of domestic violence speak about (?) They often state that when the mist descends they are unable to stop themselves or remember what actually happened. When I think back to the meltdowns that I can remember as a child all I can remember are feelings of being out of control, guilt, shame, embarrassment and extreme sadness. I hated hurting others and I hated knowing that I had often done so – I found that a great burden. I wanted so desperately to be “normal” but no matter how hard I tried I just couldn’t be. It took me a long time to realise that it’s okay to be different and that “normal” isn’t all it’s cracked up to be anyway! Yes, I still do have the odd meltdown now and yes I do remember them all. As an adult I think they affect me emotionally on a much greater level because I’m now fully aware where that kind of behaviour can lead and that it’s not the answer. I would say that my last physical meltdown (throwing things and screaming) was about 6 months ago. Mostly my meltdowns now tend to be more internal – feelings of mild depression/crying that might only last for a couple of hours. For me I’ve found that after a stressful event* I need to sleep, if only for a few hours, I find it helps me manage my anxiety levels much better so that I don’t have either type of meltdown. Most days I have an afternoon nap – for me it really does help. I’ve always found meltdowns to be extremely exhausting, both physically and mentally. They really do take it out of me and as for the aftermath of emotions and feelings that they leave you with that can be worse than the actual meltdown itself. Many people think that once the screaming and crying is over then that’s the end of it but I think that’s just the beginning – 80% of the meltdown happens without anyone else even realising. That’s why it’s vital that people give us space to recover before they punish us** or talk things through with us. As a child I wasn’t keen on talking about the feelings associated with meltdowns or the actual meltdowns themselves but as a teen and adult I’ve found this process much easier. Don’t be afraid to talk to her. 💜

* What I consider to be a stressful event: meeting with a friend either out or at home, shopping, all parties and gatherings, days-out and trips to the doctors/dentist….so basically every event, good or bad, that most just “do” without even thinking are stressful to me. Sometimes a nap just isn’t enough for me to recover so a day or two off from demands is needed so I can regain control/manage my anxiety. It all depends on the length of time I was “socially exposed”. Most meltdowns aren’t caused by any one single event but more an accumulation of triggers/exposures.

** I in no way advocate the punishment of a child with PDA who has had a meltdown. By all means talk to us, explain why that behaviour isn’t acceptable and help us to understand why we do the things we do but remember only when we are calm. This might be many hours or days after the actual meltdown. Tradional forms of punishment do not normally work and in fact often do more harm than good – would you punish someone who had seizures by shouting at them, taking away their iPad and sending them to their room???

April – I wonder when you began to ‘mellow’ out and realise that yes, you have anxiety (asd based/control etc) BUT that actually life can’t be controlled and life does indeed happen. Does that day ever happen when the need to control everything around you actually subsides somewhat and anxiety/control is not at the forefront of everything?

Good question April and there’s no easy answer. I think the reason people believe that I’ve mellowed with age is because I’ve learnt to internalise a lot of my anxiety so it doesn’t show on the outside but that doesn’t mean that’s it not still raging inside – far from it in fact. I’ve also become quite the expert at pretending to be okay/managing when in fact nothing is further from the truth. PDA is very much a hidden disability, especially in adults – if you and I sat and had a 5 minute chat then you’d have no idea that I had PDA – you might just think I’m a little quirky. It would only become apparent after you had spent some real time with me and once I felt comfortable to drop the pretence. I don’t feel comfortable letting strangers see the whole me. I’m well aware that life cannot be completely controlled and I think I always have been to some extent, that doesn’t mean however that I’m happy with that – in fact it pisses me off daily! Lol. In an ideal world I would be able to control every aspect of my life but I can’t and I’ve had to learn to focus on controlling the aspects of life that I can control/influence, like my home environment. That’s why I feel so comfortable at home as apposed to outside. My being able to control my home life has meant that my daily anxiety levels are much lower than they used to be meaning that any “surprises” are unlikely to push me over the edge. Anxiety and control will always be at the forefront of everything I do. 😕

Stella – A big one for you Julia; when you are getting anxious what would you like someone to do to help you? All I want to do is hug my daughter when she’s like that but she hates to be touched, it just makes it worse.

For me it all depends on how anxious I’m feeling and what my trigger was, for example if Paul and I have had an argument then I usually just want him to leave me alone but if my anxiety has been raised by some external force then it sometimes helps if he gives me a quick hug – nothing too over the top, more of an acknowledgment of how I’m feeling. If my anxiety is very high then no amount of comfort from anyone will do any good – in those situations I’m very much like your daughter, I like/need to be left alone – I can’t bear to be fussed over as it seems to increase the anxiety. I know it must be hard to see your child going through this but space is sometimes exactly what’s needed. After I’m calm again then there’s nothing better than a hug. What works very well for me is being able to self-manage. When I’m in a stressful situation that I’m beginning to find too much then I will either work through my anxiety but if I’m unable to do that then I leave if I can. I will often just go and sit in the car or tell people I need to get home for the cats etc. That’s easier than explaining the real reason, which is very hard to do when I’m in the grips of high anxiety. Paul is aware of the subtle clues from me that I’m not coping and need to leave but if for some reason he’s missed them I just simply tell him I can’t stay here anymore and I’ll wait in the car. Sometimes just removing myself temporarily from a situation can be enough to reduce the anxiety build-up so I’ll often just pop outside for a quick cigarette and then I’m able to return. I hope this answers your question but if it doesn’t then do please leave me a comment. 😊

Nicky – I was wondering what you might say to a younger you? I’m not sure when you were diagnosed, nor what your first successful coping mechanisms were; but you must have come a long way since then, and learned a huge amount about how to make more sense out of the world on your terms. What messages or tips would you wish that you could have told yourself back then?

I was diagnosed with PDA at the Elizabeth Newson Centre in 1995 when I was 12.5. I have come so far since those early days and I still continue to do so. When I look back and remember the me of then it’s hard to believe that we are one and the same. I feel sad when I think of that confused, violent, misunderstood and lonely little girl who was just trying to fit in and make sense of things that seemed so alien to her. I think if I could tell the younger me anything it would be that everything will be okay and that I won’t be lonely forever. Life can, and is, good. I am loved and live a fulfilling life. I think that had I known that when I was younger it would have helped me massively. Perhaps I wouldn’t have travelled down so many dark roads looking for love and acceptance in all the wrong places. Then again if you think about the flip side of that, if I hadn’t experienced all that I have then perhaps I wouldn’t be who I am today. Perhaps if I had known that it would all be okay in the end I would still have chosen the paths I did but things might not have seemed so bleak and hopeless. As far as tips go I wish that people had spent more time making sure that I fully understood PDA. I think if I had had proper awareness sooner than I did I would have come further sooner, does this make sense? 😕  

Thank you all once again for submitting questions. I love doing these blogs so please keep the questions coming! 💜

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