AN INTERVIEW WITH RUTH FIDLER

Posted by juliadaunt on January 20, 2016
Posted in: ALL POSTS, GUEST POSTS & INTERVIEWS, YOUR PDA QUESTIONS ANSWERED. Tagged: , , , , , , , , , , , , , , , . 4 Comments

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. 💜

2015 in review

Posted by juliadaunt on January 1, 2016
Posted in: ALL POSTS. Leave a comment

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 39,000 times in 2015. If it were a concert at Sydney Opera House, it would take about 14 sold-out performances for that many people to see it.

Click here to see the complete report.

AN INTERVIEW WITH PHIL CHRISTIE

Posted by juliadaunt on July 29, 2015
Posted in: ALL POSTS, GUEST POSTS & INTERVIEWS, YOUR PDA QUESTIONS ANSWERED. Tagged: , , , , , , , , , , , , , , , , , , , , , , , , . 9 Comments

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.

ELLIOTT

Posted by juliadaunt on July 7, 2015
Posted in: ALL POSTS, GUEST POSTS & INTERVIEWS. Tagged: , , , , , , , , , , , , , , , . Leave a comment

A month or so ago something came up in my newsfeed that really caught my eye – a page called Elliott’s Creations For Donations – so I clicked on the link and I was blown away by this young mans incredible talent. Elliott really is an inspartation to so many, including me, and is such a talented young artist. His work gives so many great happiness and joy and this is his story told by his mum, Lucy………….

Elliott is our amazing, funny and intelligent 12 year old son. He loves computer games, coding and animals, especially his pet dog Molly and cat Rosie. He loves spicy food and eats non stop! In many ways he is a regular 12 year old boy.

However, life hasn’t been easy for Elliott. We’ve always known he was different and when he was 8 he was diagnosed with autism. Finally we understood why he couldn’t say ‘mummy’ until he was 5, why he didn’t like toys, why he hated clothes, why he was terrified of noise, why he would sit watching the washing machine for hours and why he would spin in circles. Although we knew deep down, it still came as a shock and a hard thing to hear.
Sadly, things continued to get harder for Elliott and he struggled to cope at school, getting more and more anxious. The usual autism strategies didn’t seem to be helping, if anything they seemed to make him worse. Eventually he became so anxious that just stepping through the school door would send him into such a state of panic that he would completely melt down – hitting, biting, trying to strangle himself. The last day he attended mainstream school was when I was called to pick him up just minutes after dropping him off, and he was being pinned down by several members of staff. I looked into his eyes and he was utterly terrified…like a trapped wild animal. I took him home, wrapped him in a blanket and rocked him – it took hours for him to stop crying and shaking. I knew at that point that he was never going back to that school.

Next came the fight to get him into a special school. I never realised what a stressful, long process it would be. Elliott was a whole year at home without any education before finally a special school place was found. The damage that was done in that year was huge – he stopped trusting people, he isolated himself and wouldn’t speak to anyone. He struggled to leave his bedroom and then to even open his curtains. He wouldn’t look into a mirror because he hated himself so much. He would spend hours just lying on the floor cuddling his pillow, listless and unresponsive. It broke my heart to see him like this.
We were so pleased when finally a special school place was found, and then began the transition to try and get him back into school. The relief of having teaching staff who understood his autism was enormous. Elliott was to go into a class of 8 which we hoped was much more manageable than the class of 30 he had been in before.
As expected the transition was lengthy, and there were many difficulties along the way. Eventually it became apparent that even in a small class, Elliott was unable to cope. He started sleeping in school as a way of shutting everything out, and he would also have huge meltdowns where he would trash everything and try and hurt himself and other people. The teaching staff tried everything they could think of, eventually moving him into the sensory room so he had a space of his own.

Things at home were awful, his anxiety at school would show at home with massive meltdowns that were aggressive and long lasting. He would lash out, was unaware of what he was doing and he was hurting everyone around him including his three younger siblings who were becoming scared of being at home. He also tried to strangle himself with clothing, bite his arms and hurt himself. And because he was sleeping in school, he would often be up all night. We were all exhausted.

We reached breaking point and had to make the horrible decision that Elliott needed to move into a children’s home and at this point his school felt they could no longer meet his needs, so he was again without a school placement. It was traumatic and heartbreaking for everyone, it hurt more than when my mum died, so much so that I still don’t feel able to go into further details.
During this time, Elliott was diagnosed with PDA – Pathological Demand Avoidance. It’s part of the autistic spectrum, but the strategies for handling the condition are very different from usual ASD strategies. Its biggest characteristic is the avoidance of demands due to anxiety. Well this explained why he had struggled even more in a typical ASD school! I attended a full day course about PDA, presented by Phil Christie, and felt like the whole day could have been about Elliott – he fitted the description perfectly. I started using PDA strategies such as offering choices, disguising demands, etc and I started to see this made things a little easier for Elliott.
Eventually, after a few months, in March 2015, Elliott’s school came up with a solution that we hoped would meet his needs. It involved a new provision that would be at one of their different sites, and Elliott would have his own classroom and playground and staff who understand his PDA. When Elliott went to have a look around, he couldn’t stop smiling – he was so excited! He wanted to do something to say thank you to his new headteacher and so decided to paint her a picture.

He really enjoyed doing it and found it very calming! He then painted a picture for one of his teaching assistants for her birthday. People really liked his paintings and started to ask if they could buy one. Elliott wasn’t interested in making money out of it (apparently he is quite content with his pocket money!) and decided he would like to raise money for charity. His sister had recently cut off her hair for charity and raised £1500, so he was keen to do something himself – and cutting off his curly locks was not an option!! We made a Facebook page for him – Elliott’s Creations for Donations – and he decided he would like to raise money for his school (Kingsweston Special School) and the PDA Society. At the last count he had raised £1602!! He has so far donated £500 to The PDA Society and £1000 to his school.

The support he has received from everyone has been incredible, people have been so kind and generous. It has helped him slowly start trusting people again, and he is starting to come out of his shell and is so much happier!
Of course things are still tricky, they always will be due to his complex condition. Last week he spent hours avoiding saying the number 5 as it was the answer to his maths question – he came up with every excuse under the sun why he couldn’t say it!! He struggles to walk because of the expected demand of going from one place to the other, so we often have to use a wheelchair. He won’t use any toilet other than at home. He is terrified of most public places due to alarms – he is incredibly noise sensitive. He still hates wearing clothes and hasn’t worn shoes or socks in over a year!
This venture has been such a positive thing for Elliott, and as long as it stays that way we will keep encouraging him. We are so proud of our son.


Thank you so much to Elliot’s mum for writing this piece and for allowing me to share their story with you all. I think we can all agree that Eliott is one inspirational young man. Elliott is now raising funds so he can have an Autism Service Dog. If you would like to help Elliott achieve this goal then you can donate via his Just Giving page. Please dig deep everyone – it would really make such a big difference to him. Thank you, Julia💜

Don’t forget that Elliott’s wonderful creations are available to buy via his Facebook page – Elliott’s Creations For Donations

MY WORLD OF SLIMMING

Posted by juliadaunt on July 2, 2015
Posted in: ALL POSTS, FRIENDSHIPS, LIFE IN GENERAL. Tagged: , , , , , , , , , , , , , , , , , , . Leave a comment

Well for those of you who don’t know I’ve joined Slimming World! I joined on 12th Feburary 2015 and in those 19 weeks I’ve lost a total of 2 stone 4lb! I’m loving it! Paul has also been ‘on plan’ with me and has lost 2 stone and is already at his target weight! 👍 He’s lost 4″ from his waist and is happier when he looks in the mirror, which is the most important thing in my book. Beauty is only skin deep and it’s not about how wonderful the outer package is – it’s what on the inside that counts the most when all is said and done. I have a slightly longer weight loss journey than Paul but I know that I can make it. I won’t let PDA stop me – it might slow me down a bit but I will just have to push on through. I’m not happy being the size I am and it’s time to stop complaining about it and instead it’s time to do something about it. 😊

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I did try Slimming World in my teens but I only managed to keep it up for about 8 months. I lost quite a bit of weight but I did struggle with it and it was in the days of Green and Red days and I found that like too much hard work. It’s much simpler now and much less of a demand, which is another great bonus for someone like me!

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Gaynor, the lady who runs our group, has been so understanding and supportive. I’ve told her that I have an ASD and that coming to group every week will be an ongoing struggle for me. She’s been great. She’s never once judged me or made me feel like I must come to group every single week. The most surprising thing for me is that I have gone every single week! Yes, it’s felt like a demand and has therefore increased my anxiety but it’s not been something that I’ve hated doing or something that I’ve not been able to overcome, which I was worried it would be. I think it helps knowing that Gaynor knows if that makes sense. Also having Paul come with me every week has helped me massively too. His support has been invaluable, as always. If you’d told me at the start of the year that I would be happy going to a group meeting once a week and sitting in a big circle with a load of strangers all clapping and supporting each other I think I would have called you a liar! As you all know praise isn’t something I’ve ever been that comfortable receiving. I’m happy to give it but getting it in return makes me uneasy.

Slimming World, on paper, is actually my worst nightmare if you think about it. Even if you removed the group aspect then that would still leave me with the demand to follow a diet but it’s working and I’m coping. I would even go so far as to say I’m enjoying it! I’m really enjoying the food, which I’ll go into more detail on in a bit, but I’m also enjoying the social element and seeing how everyone has got on from week to week. I’m now even helping to weigh people in. I now find myself looking forward to Thursday evenings! 😊

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So why does Slimming World seem to suit me so well when it’s a strict diet full of demands? Well that’s just the point: it’s not. It’s a healthy eating plan that you control. I chose how strict I’m going to be and no food is banned, like it is on other diets. It’s all about choice and making those choices healthier ones. If I want a big bag of chips I can have them but I prefer to have a healthier alternative now, such as homemad potato wedges. Yes there are ‘rules’ that I must follow in order to see results but they are flexible so in true PDA-style I’m able to handle complying by simply moving the goalposts a little bit. Another bonus is I’m never hungry! I’ve tried so many other diets in the past (including the dreaded cabbage soup diet! 😳) and I’ve always been left feeling hungry and then I would fall off the wagon. I’m actually eating more now than I’ve ever done before but the difference is I’m eating the right foods now. A typical day for me involves a cooked breakfast and yes I mean bacon (all visible fat removed), eggs, beans, toms and mushrooms with wholemeal toast! 👍 Any ‘diet’ that starts the day off like that gets my vote! Lol. Then for lunch I might have a jacket with beans and salad. Dinner is normally something like steak, jacket etc or homemade spaghetti bolognese – so as you can see it’s not like I’m having to force down plates of plain poached chicken breast on a bed of limp lettuce in order to see the results on the scales! I also snack quite a bit on cold meats, low fat yogurts and cereal bars. One of the foods that I missed the most were Scotch Eggs believe it or not but Slimming World even has a recipe for healthier alternative for that and it tastes amazing! And it’s ‘Syn-free’ which is fab compared to the unhealthy alternative which is 16 Syns! Syns are basically like money. You get a certain amount that you can spend each day on the little guilty pleasures in life. 😉 I normally spend my Syns on sugar for tea, light mayo etc, cereal bars and my weekly bag of crisps but what people chose to spend their Syns on is entirely up to them – another one of the flexible elements that are so PDA-friendly.

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People are always asking me for the recipe for Slimming World friendly Scotch Eggs so here it is 😊

💜💜💜 SYN-FREE SCOTCH EGGS 💜💜💜

6 medium hard boiled eggs (cooled completely)

500g pack 5% fat/extra lean pork mince

1 tsp garlic salt

1/2 tbsp dried mixed herbs

80g couscous (dry weight)

1/2 tbsp “season for all”

1/2 tsp paprika

100ml hot water

1 beaten egg

Frylight

Preheat the oven to 170/gas mark 3 and Frylight a baking tray.

Add the mixed herbs and garlic salt to the pork mince and mix thoroughly.

Divide into 6 portions and flatten into rounds that are large enough that they will completely cover an egg. Wrap around each egg, making sure the mince is sealed properly and evenly and tightly covers the egg. Spend a bit of time on this stage to avoid the eggs splitting open when cooking. Leave to one side.

Put the couscous, season for all and paprika into a bowl and stir. Add the hot water and cover with cling film. Leave for 5 minutes, then stir well and cover again and leave for a further 5 minutes. After a total of 10 minutes break up any clumps with a fork and pour out onto a dinner plate.

Pour the beaten egg onto a dinner plate.

Roll the pork/egg balls into the beaten egg and then roll in the couscous. Cover evenly. Roll gently between your hands and fill in any gaps. Repeat with the rest of the pork/egg balls.

Bake in the oven for between 30 and 50 minutes, depending on your oven. Turn them halfway through. The couscous will go brown.

Once cooked leave to cool and then enjoy!!! 👍

*the pork mince can be substituted with 5% fat/lean turkey mince if you’d prefer or you could even use Quorn mince for a veggie alternative.

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Ideally I want to lose a total of 11 stone and I’ve already lost more than 2 stone of that so I’m well on the way. 👍 I’ve given myself a timeframe of 24 months to do it in and if I carry on the way I am then I’m confident that I’ll achieve both targets. I’m so proud of how much I’ve lost already and although I have a massive target I am taking it one stone at a time. I’m celebrating every loss, even the little ones, and I’m not beating myself up when the loses aren’t so good or even non-existent. There aren’t many things out there that are PDA-friendly but Slimming World is certainly one of them! I have more energy, I’m healthier and I’m meeting new people. Everyone in the group is so friendly and helpful. We are all in this together and yes we can do it! 🏆

YOUR PDA QUESTIONS ANSWERED (part 6)

Posted by juliadaunt on April 24, 2015
Posted in: ALL POSTS, YOUR PDA QUESTIONS ANSWERED. Tagged: , , , , , , , , , , , , , , , , , , , , , , . 3 Comments

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

YOUR PDA QUESTIONS ANSWERED (part 5)

Posted by juliadaunt on April 16, 2015
Posted in: ALL POSTS, YOUR PDA QUESTIONS ANSWERED. Tagged: , , , , , , , , , , , , , , , , , , , , , , , , . 11 Comments

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. 😊

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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.

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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