YOUR PDA QUESTIONS ANSWERED

Following on from the success of my recent interview with Phil Christie I’ve now interviewed Ruth Fidler. Ruth is an Education Consultant with over 20 years experience of teaching in an all-age provision for children across the autism spectrum, including experience of working at a leadership level developing good autism practice to meet the needs of an increasingly complex pupil profile. She has a specialism in PDA, interactive approaches and emotional well being. She is also the author of Can I Tell You About PDA? Ruth now works on an independent basis with Phil Christie, details of which can be found HERE. Also Ruth and I are currently writing a book together which will explore the many facets of PDA and their impact on me and my day to day life. Happy reading…..

When did you decide that you wanted to work with children on the spectrum and how did your involvement with PDA begin?

I didn’t make a conscious decision to work with children on the autism spectrum, my work evolved as I enjoyed the opportunities I had to teach more pupils and to spend time developing my interest. I began my teaching career working in inner city schools in the early 90s when a lot of special schools were closing and more children with additional needs were arriving in mainstream classrooms. I soon felt captivated by these extremely unique individuals. I enjoyed their company and loved the rewards of engaging children who are more complex to engage. This then led me to my work in a specialist autism provision where I had the chance over the following 20+ years to get to know a wide range of individuals with autism including many with PDA.

If you could give one piece of advice to a teacher what would that be?

It is extremely hard to give only one piece of advice to teachers working with children and young people with PDA. I could probably summarise it in 3 key points, though, as follows:

1) Make no assumptions. Get to know each individual and try to understand their thinking and behaviour. Do this by collaborating with them as well as with other people who know them well, particularly their families.

2) Allow more processing time. Children with PDA not only need to process the sensory, environmental, social, emotional and teaching information like others with autism, but they also need to process the level of demand being asked of them. As an additional bonus, when we give children more processing time, we also give ourselves more processing time. This can be essential in maintaining co-operation and engagement since we often need to be thinking a few steps ahead of a situation with children with PDA.

3) Be flexible, creative and indirect in your approaches. Prioritise issues to address in collaboration with families and use depersonalised indirect approaches in your work with children.

If you could give one piece of advice to a parent what would that be?

I don’t think it is straightforward to give any parent one piece of advice least of all when parenting some of the most complex children who do not respond well to traditional parenting techniques! I would suggest that they take on board the 3 key points for teachers as well as building collaborative relationships with professionals. It is really important that they have a good understanding of PDA which helps to make sense of their child so that, as they develop strategies that work with their child, they can understand why those strategies work well. I would also say that it is important that they get support and collaboration from friends, family and professionals so that they are not dealing with the challenges their child may bring on their own and so that they can protect the wellbeing of everyone in the family as best as possible.

How helpful do you think a PDA diagnosis is?

What matters most in meeting the needs of a child or young person with PDA is that the people living with them and supporting them understand them. Understanding a child obviously needs to be focused on them as an individual but having a diagnosis can be crucial to being able to make sense of how and why this individual thinks and behaves as they do. Particularly as children mature it is essential that they develop self awareness and positive self esteem. These skills will be enormous assets to them as adults and knowing about their diagnosis will support them to make sense of who they are. In addition, a diagnosis will also provide a route to appropriate strategies and appropriate services. If a child has no diagnosis or is misdiagnosed then lots of time and energies can be wasted in trying different strategies, some of which will not work, without realising why it is that certain approaches are more effective for this individual.

What is your favourite PDA trait?

In my experience, a lot of people with PDA have extraordinarily unique and creative ways of thinking and enjoy interacting using humour. Although there can sometimes be challenges in spending time with people with PDA, they can also be full of great charm and fun.

Do you think ASD training including PDA training should be compulsory in all UK schools?

There is growing awareness of autism as a spectrum condition in schools across the UK and the Autism Education Trust are doing some fantastic work promoting training and embedding good autism practice. In my independent work, I am certainly aware of an increasing number of requests for training and consultancy which has to be a positive step towards better meeting the needs of pupils with PDA whatever their educational setting. It is also pleasing to hear more instances of autism awareness being part of teacher training as well as in many other everyday settings such as cinemas, hospitals, airports, GP surgeries. It is not easy to make any training compulsory at a national level but it has to be encouraging that a greater number of people are being trained and a greater number of organisations are recognising the need for this training. It is equally important however that training is of a high quality and does not stand alone but is followed up by embedding good everyday practice.

Do you think awareness, understanding and recognition of PDA is growing and what more could we do to further it?

There is growing awareness of PDA. Big steps have been made through the recent publications (Jessica Kingsley Publications), national conferences (National Autistic Society), support for families (PDA Society), media coverage (Channel 4/Maverick TV) and by the increasing amount of research being carried out by Liz O’Nions. We have made a lot of progress but we know that we have a long way to go to refine and deepen our understanding of this complex condition. We need to improve awareness in a range of professional circles, to develop services in supporting families, to extend research and to develop broader recognition of strategies which are effective for children with PDA.

I want to say a massive thank you to Ruth for this interview. 💜

I wanted to try something a little different this time around rather than just my ramblings, so I’ve interviewed Phil Christie. Phil is a Consultant Child Psychologist with experience of diagnosis and assessment of children across the spectrum as well as having been Director of an autism specific school and children’s services for 30 years. He has a background in research, training and publications, with a recent emphasis on those with a diagnosis of Pathological Demand Avoidance. Phil is now working mostly on an independent basis – you can find out more information about this HERE

I think you’ll agree with me that it’s a very interesting and insightful read. Please post any questions/comments for Phil in the comments, which you can find at the top of the post or you can click HERE, and I’ll be sure to pass them on. Thank you and enjoy. 😊
1. When and how did you decide that Child Psychology was the career path you wanted to follow and how did that lead to working within PDA?

While studying for my first degree at Lancaster University I was working on a voluntary placement at a large psychiatric hospital in Scotland. While there, I was asked to work on a daily basis with a five year old boy with autism. This was at a time when not all children were entitled to education and many of those with autism were placed in hospital. This child and the work that I did really caught my interest and I went on to train in Child Psychology at Nottingham University with John and Elizabeth Newson. I then became a close colleague and friend of Elizabeth’s over many years as I continued my interest in autism at Sutherland House. As part of this Elizabeth and I set up the Early Years Diagnostic Centre (which later became the Elizabeth Newson Centre). Elizabeth inspired and encouraged me in many things, one of which was PDA. Many children we worked with at Sutherland House and saw for assessment at the ENC showed this profile.

2. Do you think a proper PDA diagnosis is important? If so, to what extent?

I think a correct diagnosis of any developmental condition is very important in helping people reach a shared understanding of an individual’s needs. Of course every child or young person is an individual with their own personality and profile. The individual will, though, share many underlying characteristics that are common to others with the condition. A diagnosis should help to explain, or ‘make sense’, of why certain aspects of development and behaviour occur and give a context to them. A diagnosis should act as a ‘signpost’ to understanding and give suggestions and guidelines for better support. Without an appropriate diagnosis there is a danger that an individual is misunderstood and doesn’t receive support tailored to their needs.

3. In your opinion what are the ‘must have’ traits for a PDA diagnosis?

Elizabeth Newson’s original descriptions gave a list of features that she felt were the criteria for diagnosing PDA. I have said for a number of years that we now need to establish which are central and which are secondary (this is very similar to the way in which the original diagnostic criteria for autism developed). Clearly extreme (or Pathological) demand avoidance is one and this must be demonstrated in a range of ways, including what Newson described as ‘social manipulation’. Surface sociability, excessive mood changes and an anxiety driven need to be in control are also crucial. Ability in role-play and pretend was also highlighted by Newson. I think research is now showing us that we need to better understand the extent and nature of imagination in role-play both within PDA and the autism spectrum more generally.

4. What is your ‘favourite’ PDA trait?

I’m not sure that I can answer this – I like the creative thought processes and determination of many of the individuals that I have met!

5. Is it possible to be diagnosed with both PDA and Aspergers?

It’s possible that someone might give this as a diagnosis. I personally wouldn’t as it seems to suggest two separate conditions. Clearly, there are overlaps with the diagnostic profiles. Where this is the case I prefer to describe it as the person having an autism spectrum condition which shows elements of PDA and Asperger, or alternatively say they have an overlapping presentation.

6. PDA is now being recognised as part of the autistic spectrum in its own right rather than just a related condition. How much do you think that might help current and future PDA recognition and diagnosis?

I think it helps enormously as it now gives greater recognition and validity to PDA and brings it into to the realm of more autism practitioners and researchers. We still need to do more work on better understanding the essential components of PDA and what makes it distinctive.

7. I believe more research needs to be carried out – would you agree with this statement? If so, which areas need most focus?

Yes definitely but real progress has been made in the last few years and momentum is building. I think priorities include better understanding of the precise nature of the condition/defining criteria, particularly the area of social and emotional understanding. As I’m sure you are aware very little is known from a research point of view about pathways and prospects into adulthood. Evidence based work around educational strategies is also needed. The list goes on really.

8. Why do you think some professionals are so quick to dismiss PDA as a valid diagnosis?

Being dismissive is not a trait I admire in professionals! We all need to be open-minded and listen to other views. Professionals generally are much less dismissive than they were about PDA, partly because of the growing research base. At the heart of this, amongst some clinicians at least, is that PDA is not in the diagnostic manuals (DSM and ICD). Some areas/organisations have protocols about the diagnostic terminology that is used. The response to this can be very complex but there are two points that I often make. Other clinicians point out that the manuals are more concerned with research reliability than they are with clinical validity (ie descriptions that help make sense of an individuals presentation). We need to ask the question in diagnosis about what it’s for. The second point is that there are subsequent versions of each manual (DSM 5 and ICD 10 are current). Terminology and categorisation changes over time, in the light of research and clinical understandings. If we don’t start to use a term (however tentatively) until it’s in the manuals how can we start to do research which better helps to understand the validity of the concept?

I would like to say a massive thank you to Phil for taking the time to answer these questions and I hope you all enjoyed it and found it helpful. Please remember to share this. 👍

You can order your copy of “Understanding Pathological Demand Avoidance Syndrome In Children” HERE, which Phil Christie co-wrote.

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! 💜

Please click on the following link to read the other YOUR PDA QUESTIONS ANSWERED

It’s been a while since I did a “your questions answered” post – today I cover self-harming, anxiety and friendships, amongst other things. I hope you enjoy. 😊

Sue – Have you ever cut yourself just to get a plaster or bandage? My son will threaten to cut himself and I know that’s for a reaction but this time it was different – he said he needed to have a cut to get a plaster. I said he could have a plaster anyway but he refused and said no – I have to have a cut for a plaster.

This is an interesting question. The short answer is no I never cut myself just to get a plaster. The longer and more detailed answer is I that did fake injuries that wouldn’t be visible, like sprains, in order to get a bandage and attention and any minor graze or bruise needed a plaster. I did this all the time. This led to a bad case of “the boy who cried wolf” when I fell whilst outside on my rollerskates and I did actually break my wrist but my mum, who was so used to me limping home and complaining of this injury and that injury, just said “there there” and chalked it up to me crying wolf again. It wasn’t until the next day that they realised I was actually really in pain and I was taken to A&E. This obviously led to me having a cast put on and of course I loved it as it meant 6 weeks of attention! This was all pre-Ritalin.

Melissa – Did you ever talk about self-harming so you couldn’t go to school/or do something? Does talking about it tend to lead to doing it?

This kind of follows on from Sue’s question above. I didn’t use self-harming, or the threat of, as a way to get out of school/avoid doing something but I did use injuries and illness in that way. I always had a tummy ache, headache, sore throat or an ear ache. Anything I could use to avoid, but that wasn’t visible, was used often. The self-harming didn’t start until I was about 11 and it wasn’t something that I threatened to do beforehand. I would simply go into my room or the bathroom and quietly cut myself with a razor blade. I often hid my cuts from others, only showing them when the pressure of hiding them became too much. I was cutting myself for months before anyone knew. For me cutting myself had nothing to do with attention or avoiding demands – it was simply a way to make myself feel better. Self-harming is certainly something I would never advocate but I won’t lie – it helped me to let go of some of the negative feelings about myself that I was harbouring. It was such an emotional release if that makes sense?

Simon – How can I encourage my 11 year old son to think about how his PDA is helping or hindering him in life? He is always saying I will never get rid of my PDA or PDA wins etc.

This a difficult one Simon. I think a good place to start is to talk to him about others with PDA. Let him see that there is hope for his future. At the moment he, like all of us at his age, can’t imagine being 12 let alone being an adult and it will be hard for him to ever imagine himself any different from how he is now. Remember this is all he knows and all he has to compare things to. It’s still important to let him know that he’s not alone though, even if it appears to fall on deaf ears. Have you considered getting a copy of Ruth Fidler’s new book Can I Tell You About PDA? for him to read in his own time. I wouldn’t push it with him as that will more than likely just cause avoidance but let him know the book is there if and when he wants to read. I would also recommend that any siblings read it too. As he matures he’ll naturally gain a much better understanding of himself in relation to his PDA. Love, time and support are most important and he needs to feel that you understand him (even if you don’t).

Alison – At what age were you able to start to manage the anxiety and recognise that actually you were being controlled by it?

Hmm….where to begin with this one! Even at the ripe old age of 32 I still don’t think I have that good a control of the anxiety. There are some days that it’s so bad that I literally can’t do anything. As long as I’m in complete control of everything then the anxiety is low but this of course is hard to achieve in real life, even as an adult. Life has a habit of throwing curve balls and then there’s the unforeseen things that can’t be predicted let alone controlled. All I can do is try to manage and juggle my anxiety and things that I need to do. On good days I do more and on bad days I do less. Sometimes this can change from minute to minute so it’s just a case of keeping an eye on things and then adjusting accordingly. It can be exhausting some days but it’s vital if I’m to continue enjoying my life. I’m not stupid – I’m well aware that anxiety, at times, controls me but I’ve accepted that there’s very little I can do about that. I just to try and keep the balance right and take the rough with the smooth. It’s not easy but then anything that’s worthwhile never is! I wouldn’t not have PDA – it’s what makes me me. 😊

Kay – Can I ask you about friendships? Have you had any problems making/keeping/sustaining them? The reason I’m asking is that my daughter is so sociable and makes friends very easily, but within a blink of an eye it’s over, usually with tears and tantrums. Obviously she doesn’t learn from past experiences and I fear she’ll end up lonely. Can you relate to this in your teenage years and how does it feel to live in such social turmoil?

I can really relate to your daughter on this one. I’ve always had a problem with friendships and I still do now to some extent. As a youngster I would become too attached too quickly and I was too controlling. As you can imagine other children didn’t appreciate this and they soon had had enough and the friendship was over. It was very difficult for me to understand at the time – you see I wasn’t meaning to be so clingy, aggressive or controlling, I was just simply being me. I do have one or two friends that have remained from childhood but they are special. They had a level of understanding and compassion that I would say wasn’t the norm for children, or even most adults! I hurt them but they understood and forgave, even though they, like me, had no actual understanding of PDA. It was upsetting, especially as a teenager, because I longed to be “normal” and having normal friendships was part of that dream. I felt like a failure. As an adult I’m still a terrible judge of character and I often make bad choices. I invest in friendships that most would walk away from – I just can’t see it until it’s too late. I’ve always afforded people trust right from the start when perhaps I shouldn’t. I realise that trust is earnt and not just given but I just can’t help it. As a child this “given trust” would often lead to other children taking advantage of me, and to some extent this continues into my adult life too. I just can’t see it happening at the time. I think my problems with friendships now arise from a mixture of me being awful at picking “the right people” as friends, my longing for acceptance and my desire to be valued. Despite all of these problems I’m far from lonely – I’m in a loving relationship with my soulmate, I have a great network of real life and Facebook friends and I have a very supportive family. My life has naturally evolved in such a way that I’m almost entirely surrounded by friends who understand PDA, on whatever level. I think this is key to maintaining healthy long term friendships. Try not to worry – we are some of the most loyal and funny people on the planet, your daughter won’t be lonely. 💜

Nicola – My son suffers from an “injustice trigger”, ie if there is an injustice, however minor, he cannot let it go and it builds and builds to a meltdown. If you are similar, are there any strategies you use to help you move on or let it go?

As a child I was the queen of holding a grudge! (And I still am to a certain extent!) If anyone wronged me, deliberately or accidentally, then I would make sure they paid and I would stew and stew, becoming angrier and more resentful, and yes this did often lead to meltdowns, either at the person in question or at someone innocent. As an adult this “injustice trigger” is much more focused. I can’t bear it if I see someone being bullied, I’m a great believer in freedom of speech and I won’t take any crap from authorities! When friendships go wrong now it does trigger my anxieties and I have to try at look at things objectively, which isn’t easy to do, but it’s necessary if I’m to move on. More often than not friendships fail because of a lack of communication – either they have an issue with me but don’t feel they can talk to me about it because I have PDA or I’ve misunderstood something they’ve said or done. Either way this always leaves me with an overwhelming feeling of injustice. From my point of view: it pisses me off that people think that because I have PDA that it renders me incapable of having a rational conversation or being able to see their point of view – that simply isn’t the case, in fact the complete opposite could be said. I’ve learnt to deal with these feeling of injustice by removing myself from the situation and looking at things objectively. I’m then able to see what happened and who was to blame. This process then makes letting it go and moving on much easier. I still hold grudges but I don’t necessarily act on them, I just deal with them. I’m very stubborn but I can say sorry and admit when I’m wrong. This is only something that I’ve mastered over time.

Thank you all for reading once again. Please don’t forget to like and share this post. 💜

Follow the link to read parts 1, 2, 3 and 4 of YOUR PDA QUESTIONS ANSWERED

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

Here is part 3, discussing anxiety, self-esteem and intimacy. Enjoy and I hope it helps and raises awareness further. 🙂

Colleen – On a scale of 0-10, where would you put yourself as far as general happiness and life satisfaction? If there was some way to magically be neuro-typical, would you take it?

Good question. 🙂 I would say about I’m about a 7 or an 8 on average. Sometimes I dip to a 5 but only for a few days at a time. I’m incredibly lucky – I’ve always been a positive person who doesn’t like to dwell on things for too long. Life is what you chose to make it. Shit happens but I think it’s how we all deal with that shit that shapes who we become, well that’s just my way of looking at it and I understand it’s not like that for everyone else.
There is absolutely no way I would want to be neuro-typical, in fact I couldn’t imagine anything worse! Don’t get me wrong I haven’t always felt like this. I spent most of my life wishing I was ‘normal’ just so the pain would stop. I longed to be accepted but once I accepted that I was different the pain eased. I realised that it was okay to be me, that I did have a place and purpose in this world and that I could be loved. I don’t think I would be me without PDA. I like who am. PDA is my gift that I can use to help others. 🙂

Debbie – How did people help you with your anxiety when you were younger? How do they help you now? And what if anything has changed?

That’s a difficult one to answer. I tend to keep my anxiety to myself, not because no one would understand but simply because if I did tell them then it would be all I talk about! I feel anxious most of the time – it’s just bubbling away under the surface. Simple tasks can push me over the edge. Apart from having an extremely understanding and supportive family and network of friends I don’t have any help with my anxiety, such as medication or therapy, and none has ever been offered since I turned 18. I’m not sure I want that either, I’ve learnt to manage okayish without it and I’m not sure how I would deal with an outsider know-it-all coming in and telling me what’s what. It’s been a long time since I was ‘in the system’ and I don’t really want to open up old wounds. The people around me just know it’s there, under the surface, without me saying. I do tell them, if I can, when it’s about to boil over though – more for their benefit than mine. Time and space is also key. If I say “leave me the hell alone!” then do it. I mean it. I need to be allowed to process the jumble of feelings that are racing through my mind and I can’t do that if someone is there going on and on. Pressing ‘pause’ on things is often the only way I process when I’m on the edge, which I will add happens about once a week now. I think many think that I don’t lose it or have meltdowns anymore but I do. They just aren’t as frequent. Neither are they violent or as lengthy as they used to be but they do still happen.
I’ve always felt anxiety but my fuse has got much longer over the years and so have the triggers. Having people around me who ‘get it’ is the most important thing when it comes to anxiety. Most of my childhood was spent by me feeling intense anxiety but not being able to explain it to people and having ‘traditional’ parenting/schooling inflicted on me so I wouldn’t say that it was managed at all then. I don’t think many realised that anxiety was the root issue. For the first 12 years of my life you have to remember I was ‘just a naughty child’ who needed ‘a good smack’. Once I was diagnosed and the adults involved with my case got on board with PDA then it was much easier and my anxiety was seen as just that and then it began to be reduced. We all then worked bloody hard to undo 12 years of damage for mismanagement and misunderstanding.

Sonja – How do I preserve my child’s self-esteem? What is the one thing you wish your parents knew? And my husband asks: how have you controlled/managed your meltdowns within yourself?

I’m going to have to answer this with the answer that I give most of all and that is: self-awareness is key. They need to know about PDA. Talk to them, please. How can we possibly expect children to make sense of themselves and manage their behaviours if we don’t give them all the facts first? They need to be given the facts and they need to know that it’s okay. Explain that they aren’t alone and that just because they act badly at times it doesn’t mean that they are bad or wrong. Tell them that you understand, even if at times you don’t. Comfort them. Love them.
I wish that my parents were given the affirmation that they needed that it wasn’t ‘bad parenting’ or some other fault of theirs because then I would have been helped sooner and they would have talked to me, explained things and understood me.
As far as meltdowns go it’s been a very long road and one that I haven’t had much outside help with. For me it’s been a personal battle and one that no one could help me with. I had to experience the inner turmoil of seeing the people I loved hurt by my actions but not being able to stop myself from hurting them in order to find ways of coping and not lashing out. It got to a point when I couldn’t cope with the guilt if I hurt them anymore so I was forced to look inward and find a way to stop. It took a lot of work and years of upset but I got there in the end. Developing empathy helped massively.

Anna – Were you distant as a child? Did you prefer to be left alone in your own little world and if so did your family let you be or did they keep trying to reach you?

I was an extremely ‘social’ child, well I liked to be the centre of attention! When I played though I often would play the same game, alone, for hours and I liked it like that. For example I would play with my dolls house on my own for the entire day. No one ‘interrupted’ me either. I think for a number of reasons but mostly because it was clear that at that moment in time I needed some space and they were all probably glad of the space and time away from me! I think it’s important to learn when your child needs that time and space and to allow them to have it. I think it’s also important to still ask them if they would like you to join them but don’t push it and don’t worry when they say no. Remember that our ‘normal’ isn’t the same as yours. Sometimes we need a break from your world, just as you sometimes need a break from our world. Remember that and never use ‘normal’ as your benchmark. 🙂

Tracy – What ‘can’t live without’ advice would you give to kids, teens and emerging adults?

I’m going to start sounding like a broken record here but – self-awareness, learn as much as you can about PDA, talk to people with it, talk to your family and friends but most importantly don’t hate yourselves. Acceptance. You aren’t wrong or bad. You aren’t alone. Love yourself.

Anon – Do you have any issues with intimacy? Were there any problems when you were a child, such as hugging random people?

Intimacy isn’t an issue now but it has been in the past. You see I have always trusted people right from the word go. They never had to earn my trust – it was just given freely and, as you can, imagine some men took advantage of this and it left me not trusting them. Thankfully I struck gold when I met Paul and he showed me that not all men are arseholes. 🙂
As a child I was very inappropriate across the board with strangers, including running up and hugging them. I grew out of such things when I was about 14.

Love to you all. X

Read part 1

Read part 2

As promised here is ‘part 2’ of your questions answered. I’ve tried to answer them all as honestly as I can. I’m already working on part 3! 😉 Enjoy. 🙂

Kay – What does it feel like before, during and after a meltdown? Do you feel any remorse/guilt for the things you’ve said or done?

This is an interesting question and one that will have quite a long answer so please bear with me. 🙂 It’s quite hard to put into words the feelings before a meltdown as 9 times out of 10 I don’t see it coming but the ones I do see coming are usually caused by a single event, such as being in a busy supermarket on a Saturday afternoon (!) The others tend to creep up on me and tend to be as a result of many single events all culminating in a meltdown. When in the grips of either meltdown I feel an intense feeling of being overwhelmed. Like I just cannot take anymore and if I were to stay in this environment then I might quite literally explode. I also experience very intense feelings of fear and panic, like everything is out of control, which make me even more anxious than the demand or event that actually triggered the meltdown in the first place. After an instant meltdown I feel embarrassed because I wasn’t able to keep a lid on things and stay in control. I hate the feeling of failure that follows because I couldn’t cope and I’ve had remove myself from a situation. I’m also left feeling physically and emotionally drained, like I’ve been awake and on the go for 2 days, which normally results in me needing to spend a day or 2 doing nothing but watching TV and sleeping. When it’s a built-up meltdown I feel all of the above but I also feel intense guilt and shame at my actions. You see when it’s a built-up meltdown I don’t normally see it coming and it catches me off guard and means that I often flip and lose my temper with Paul. I end up saying and doing things that I know erode our relationship more and more over time and it kills me that I hurt him but I just pray to God that he understands. I can be really vile and I hate it. Remorse and guilt are feelings that I know all too well – I hate hurting the people that I love. Meltdowns are one of the few times that I ever wish that I was “normal”. 😦 Thankfully though they are becoming less frequent and I’m getting better at pulling back once I’ve started in meltdown but sometimes I just simply can’t control it but perhaps with more time and practise I will. 🙂

Anne-marie – What has been helpful/supportive? Also friendships, do they get easier as you get older?

The short answer is love. The longer answer is the love and support I receive from Paul, my family and my friends. I couldn’t manage without it. In the dark periods I need to know that I am okay, that it is worth fighting and that I will be okay which I couldn’t do without this support. Just knowing that I have a group of people around me who don’t judge or hold a grudge is so important.
As far as friendships go, yes I do think that things are easier now I’m older, although like most people I still get my fingers burnt from time to time. I tend to trust people far too much from the outset rather than having them earn my trust and this, as I’m sure you can imagine, has led to my being taken advantage of. I like to think that one of my best qualities is that I’m extremely loyal. I have a great group of friends now, all of whom are PDA aware, and I think that’s the most important thing and which I’m ashamed to say was lacking from my friendships in the past due to my own preconceived ideas. I hid my diagnosis but I’m pleased to say that I don’t anymore. 😀

Kaz – I would like to know what was the most helpful thing for you as an adolescent that helped you make the transition to adulthood and what as parents we can do to make our kids lives a little easier?

For me I would have to say that what helped me the most was Ginny my outreach worker. She was provided by Social Services to spend time with me for 5hrs per week. I used to go to her little cottage and we would sing, play the piano and violin together, do crafts, cook, play cards and we also worked on fitting out a dolls house together. She was amazing and came into my life at just the right time. She helped me to see that it was okay and that life could be more than just a long list of negative and bad behaviours. I am still in contact with her to this day. 🙂 Another person whom I owe a big debt of gratitude to is my home tutor Lizzy, who I am also still in contact with. She made me feel safe and showed me that I could fit back into a school environment and do well. I don’t believe that without these ladies I would be half the person I am today even though when I met them neither one had ever heard of PDA before. They took the time to follow my lead, to learn from me and didn’t judge me too harshly. They gave my mum the break and support that she also needed and allowed me to grow and to navigate the rocky road from teens to adulthood.
I think that as parents it’s vital that you talk to your children, explain things as much as possible, talk about PDA with them and make time for yourselves too. Self-awareness is really the key to PDA – without it, the road of life is much harder to travel. 🙂

Stacey – What would your ideal partner be like? What’s the recipe for a sucessful marriage/relationship?

I’m very lucky as I can wholeheartedly say that I’m with my ideal partner. 🙂 Paul is amazingly supportive, although he is far from perfect and we do have our ups and downs like any other couple, he really is my rock. I don’t know where I would be without him. We met nearly 10 years ago on
Match.com and we just clicked. Suddenly it all made sense: this life. We are complete opposites but that’s what makes it work because what each other lacks the other has in abundance. 🙂 I’m not sure if there is a real recipe for a successful relationship but of course communication is vital and so is laughter. I truly believe that there is that ‘special someone’ out there for each and everyone of us, no matter what is in our past or what difficulties that we may or may not have. 🙂

Caroline – What is the most helpful things that can be done to maintain self-esteem? Is depression an issue, now or in the past?

For me self-esteem was completely lacking from my life until I met Paul, for a number of reasons really. 1. Men weren’t to be trusted, ever. 2. The damage that such a late diagnosis and mismanagement had had on me and 3. General issues arising from being overweight. Although I say it was completely lacking there were times when it was there in my teens but it was soon stripped away again when something went wrong, as it tended to do. I think that it’s vital to hear those 3 words: I love you. Sometimes in the midst of chaos it can be overlooked and forgotten about. I truly believe that self-esteem comes with self-awareness and self-understanding. I beg you, talk to your children.
Yes, I would say that depression has played its part in my life. I have often considered ending it all, I’ve self-harmed a lot over the years and I did once try to commit suicide. Thankfully I’m in a much happier place now than I have ever have been before and depression seems to be a thing of the past, touch wood. The urge to self-harm never really goes away and I still have to remind myself that I can’t when I’m feeling low. I think I’ve dealt with a lot of the ghosts from my past and put a lot of issues to bed once and for all. I think that helps – the past can be more damaging than the present. I wish I had the magic formula for this because I could make a fortune! I’ve just been incredibly lucky to have been blessed with an amazingly supportive partner, family and friends. Don’t get me wrong I’m not perfect and I still have days when I wake up and I can’t face whatever the world has in store for me today but I just have to keep going and ride those days out so that the good days can come.

Clayre – Is there anything that could of helped you more as a child? Also how have you dealt with issues like work, and have anymore serious behaviour issues arrisen?

For me there is only one answer to this and that is: early diagnosis. I sometimes wish that they had seen it sooner because perhaps I wouldn’t have as many issues as I do now and perhaps I wouldn’t have experienced some of the shit that I did but then, on the other hand, I wouldn’t be who I am now if I hadn’t have experienced what I did. I do think though, that no matter what the diagnosis, sooner is better than later. Support is vital too.
Work is something that I’ve never done, well not in the traditional sense of the word anyway. When I was younger I studied for a diploma in preschool practice, for which I had to work in a preschool 3 days a week, but I wasn’t able to cope with the demand to finish coursework so I had to give it up. That was when I was 16 and I haven’t worked since. I just can’t do it. I’ve tried – I’ve had a market stall twice, once selling my hand painted glass and the other selling my handmade cards, but I soon found that demand too much also and had to stop. There was a time in my life when I used to get angry at myself because I can’t work. I felt like a failure and that I wasn’t contributing anything to society. I’ve made my peace with all of that now though and I’m okay with it. I might not be able to ‘work’ but there are other ways I can contribute and feel like a valued member of society, like writing this blog and answering your questions. 🙂

If you have any questions then please feel free to message me. Peace. X

Read PART ONE now! 😀

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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Me, Myself and PDA

YOUR PDA QUESTIONS ANSWERED

AN INTERVIEW WITH RUTH FIDLER

AN INTERVIEW WITH PHIL CHRISTIE

YOUR PDA QUESTIONS ANSWERED (part 6)

YOUR PDA QUESTIONS ANSWERED (part 5)

YOUR PDA QUESTIONS ANSWERED (part 4)

YOUR PDA QUESTIONS ANSWERED (part 3)

YOUR PDA QUESTIONS ANSWERED (part 2)

YOUR PDA QUESTIONS ANSWERED (part 1)

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