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SHRINKING INTO OBLIVION

Posted by juliadaunt on February 22, 2018
Posted in: ALL POSTS, LIFE IN GENERAL, MY MENTAL HEALTH. Tagged: , , , , , , , , , , , , , , , , , , , , , , , , , , . 8 Comments

It’s been a while since I posted anything here. Mainly because I haven’t really had anything “news-worthy” to report and also because I’ve been quite stressed out. All that came to a head this morning……

So back in the early summer of last year (2017) I was “forcefully” referred to see a psychiatrist. I say forcefully because I didn’t ask to be seen, nor did I want to be seen and I was told I had no choice – that to me is force. It all came about because here in Nottinghamshire, GPs aren’t allowed to prescribe Ritalin (methylphenidate) – it must be done under the care and supervision of a psychiatrist. Moving has caused chaos. It was different in Devon. In Devon I was under DANA (Devon Autism and ADHD service). There I saw a psychiatric nurse once a year for a medication review. The GP was then instructed to prescribe and monitor BP etc. This worked well for all involved but mainly for me. Sadly for me Nottinghamshire is very different. Here Ritalin is classed as a “Red Drug” and cannot be prescribed by a GP, even with the go-ahead of a psychiatrist. So back in the summer, after one GP point blank refusing to prescribe Ritalin, I was “urgently” referred to see the psychiatrist here. It’s now the end of February 2018 and I’ve just had my “urgent” appointment. All I can say is thank goodness I wasn’t in crisis. Thankfully the psychiatrist has been writing my prescriptions while I’ve been on the waiting list. Phew.

So that’s a bit of background on things…..so anyway with my appointment looming I’ve been getting gradually more and more anxious over the past few months. I made sure the GP made the psychiatrist aware of PDA and I’ve been doing my normal preparation of reducing demands etc but it hasn’t really helped. The problem is I almost have a fear of psychiatrists. It’s certainly a very strong dislike of what they do. I can honestly say, hand on heart, that I have never had a good experience when seeing a psychiatrist – and this morning was no different. Like I said I’d done all my preparation and psyched myself up as much as possible but it was still terrifying. For days before I’ve had palpitations, sweats and trouble settling my mind. I’ve felt sick, had tummy-ache and felt tearful. And all over a 1 hour appointment. As soon as we walked into the room I knew we were in for nightmare time…..he asked about my attachment to my mother, wanted me to talk about my negative experiences at school and throughout my childhood in general and he wanted me to talk about my biological dad (who is in prison and who hasn’t seen me since I was 3 weeks old). He also hinted that he’d like me to have psychotherapy! Yeah, yeah – ain’t happening pal! I don’t have “issues” that I need to talk about. I’m fine. He kept mentioning my relationship and attachment to my mum, as if hinting at some kind of attachment disorder being the reason I am the way I am. My negative experiences as a child are in no way the cause of why I am the way I am – my issues started from birth! I tried to point this out. He asked me why I didn’t go out unless I “had to” – I don’t know why but they all seem to pick this one apart. I don’t think he realised/understood that my psychosis is a real diagnosis. He said he didn’t like patients using Google and insinuated that it’s something I’ve guessed at. I pointed out that I was diagnosed at 11 by a top-drawer psychiatrist and prescribed a strong antipsychotic medication for it, which I still take to this day, so hardly a case of google-my-symptoms-and-panic. Let’s also not forget that we didn’t have the internet back then (1994) let alone Google! So I’m sat there answering his pointless and intrusive questions and praying for the hour to end when he says to me “you look like a rabbit caught in the headlights” – that for me was the only correct observation he made! He also commented that people with psychosis don’t normally have insight into their condition!?!?? He then proceeded to ask me why I had an issue with the label of Emotionally Unstable Personality Disorder – I said I didn’t if it was the correct label. If he thinks he can stick that label on me and magic away my PDA then he’s got a surprise coming! Another psychiatrist tried to stick that label on me when he refused to acknowledge my diagnosis of PDA. I fought and had it removed from my notes. I’m more than happy to do that again. Another rather interesting comment from him was “you don’t actually have a diagnosis of autism” – hmm…..that’s technically correct but seeing as I have a diagnosis of PDA, which is a type of autism, I don’t need a separate ASD diagnosis. This stumped him a little I feel. I also had to tell him that Elizabeth Newson had passed away 3 times before it sank in and also he kept asking me what her qualifications were……anyone would think he’d never heard of Google!

So now for the best bit, the reason for the title of this blog post, the reason why I’m so angry and the reason I was so fearful going into this morning’s appointment. The Ritalin issue. At the end he announced that “according to text books it’s unusual for someone of my age to still be taking Ritalin” and “that by now he would have thought my symptoms would have reduced”. With this in mind he went on to say that he wants to see me again in 6 months with a view to reducing the Ritalin and in time stopping it altogether! Shoot me now! I said it ain’t happening but he just told me not to worry and that 6 months is a long way off! WTF! I just about held it together until we got to the car. I still can’t believe it. I feared this would happen. I had a gut feeling but I hoped I was wrong. What gives him the right to walk (forcefully) into my life, judge me for an hour and the decide the rest of my life based on what a crappy (and probably outdated) text book says! This might sound dramatic but my life as I know it will end without Ritalin (or a very good substitute). I won’t be able to function. I will damage relationships again. I will become someone I don’t like. I won’t be able to think straight. To function. To manage. Even basic stuff will become a struggle. I will have 2 demons to contend with – the PDA and the ADHD. At the moment the Ritalin takes care of 90% of my ADHD symptoms, leaving me enough in the tank to handle the PDA side of things. Take the Ritalin away and I’m left with what??? 2 demons I know I won’t have the strength to fight day in and day out. I feel helpless right now. Sad too. I’m sad for me. I’m sad for the people I love and care about. I’ve been taking it for 23 years. It’s not fair. How can he do this?! As for his comment about 6 months being a long way off – really! Has he ever met anyone with PDA before?! Has he ever met anyone with ASD before?! 6 months is now logged in my brain, like a countdown to impending doom, and there it will stay until that dreaded day actually comes. I won’t be able to forget it and move on. It’s there now. Logged and counting down.

Not much else to say on this really other than I’m angry, upset, I hate shrinks even more now and I wish that they would leave me alone to live my life in peace! Not too much to ask is it?!

I’m now off to sleep before I call the GP to update her……

Hope you all liked the title 👍 – peace 💜

UPDATE

I spoke to my GP last night and she’s prescribed me Propranolol. It won’t help with the mental aspect of my anxiety but it should help with the physical side of my anxiety (chest pain, sweats and palpitations etc). She’s also going to request a second opinion for me. 👍

I’VE DONE SOMETHING VERY STUPID……

Posted by juliadaunt on December 3, 2017
Posted in: ALL POSTS, AWARENESS, LIFE IN GENERAL, MY MENTAL HEALTH. Tagged: , , , , , , , , , , , , , , , , , , , , , , , , , , , . 25 Comments

Warning – this post contains references to self-harm ⚠️

Well I guess from the ‘warning’ you can guess what the stupid thing is that I’ve done. Yes I’ve self-harmed. First time in like 9 years. I feel awful. Worse now than before I cut. I feel like I’ve left everybody down. I’ve gone backwards. I’ve given in and taken the easy route. If only that last bit were true – it’s far from the easy route. It feels like it at the time though. Just cut and watch the blood flow and I’ll feel okay again and in that moment I do feel better but that soon fades, only to be replaced with more upset. More pain. And now added to that I feel disappointment too. Frustration at myself for doing it. Why? Why did I give in so easily? I didn’t even think twice about it. I just thought cut and did. Just like that. It didn’t even enter my mind that this was in no way a good idea. Not once. I wish it had. It has done every other time I’ve felt tempted over the last 9 years but not today it seems. Today it got the better of me. Today I gave in. Today I made a mistake. What can I do now? The blood has stopped only to be replaced with pain. Emotional pain from what I’ve done and physical pain from the cuts themselves. Like all wounds both will heal in time but they leave scars. Scars to remind me I guess. Look this was then but not now. That time will come I’m sure but not for the moment. For the moment I feel miserable. I feel like I’ve undone all the hard work I’ve put in over 9 years. It’s all been for nothing. Next comes those ‘looks’ from family and friends when they find out what I’ve done. Those disappointed eyes looking at me and wondering if I’ll do it again next time things get too much for me. Staring and wondering. Then there’s the professionals of course. When they find out then wow the judging begins. Then it’s coming from all angles. Feels like a punishment for my crimes. Maybe that’s what I need. The looks of disappointment, the wondering and the judging. Paul will have to hide the razors of course. Temptation needs to be removed for now at least. Until I can trust myself again and until I can be trusted again. I think the most important thing in all of this is I know why I did what I did. To put it bluntly – too much stress and anxiety. Lots of factors have come together of course but the biggest culprit is my PIP tribunal which is taking place on Tuesday 5th Dec. We’ve been waiting for this date for 10 months and now it’s here I wish it wasn’t. I wish it would just go away. I feel so overwhelmed with it all. The pressure for us to ‘win’ is massive. We need that money to live on. I’ve been fortunate that they didn’t stop my money (just heavily reduced it) as I know some have had theirs stopped completely. We are simply disputing the amount. I feel like I’m drowning. It shouldn’t be this hard. I just want enough money to live on. Just basic living, nothing fancy. Today spiralled for me when I posted on Facebook how sad I am that I can not afford a tree or to send Christmas cards. That was the tipping point for me. The realisation that we really are that broke. I know I should be grateful for what I have and that’s why I removed that particular post. There are others far worse off than us and I realise that. Maybe I just needed to post that to remind myself. I also deleted it because I don’t like people seeing the vulnerable side of me. I like them to see the happy me. The masking me. The me that’s always joking. This side is darker and scarier. I don’t like to acknowledge this side. I like to hide this side. To be honest this side isn’t around too often. Normally it’s under control. Out of sight and out of mind. Guess PIP tribunals and the anxiety they cause are just too much. Paul knows what I did now and just asked me how I’m feeling. Less anxious is my answer. More emotionally unstable though. Not sure which demon is worse. I’m hoping that writing this will help me. It might also help you. I keep crying. Then laughing. Then crying again. Wish I could fix on one emotion and stay there. It’s exhausting. Now I’m feeling guilt. And shame. Lots of it. I’m scared that this post will upset people. I really don’t intend it to do anything other than help others to understand and perhaps even stop someone from doing the same. Please don’t judge me – I’m not in the mood. Just read and share this post and help others. Self-harm is such a taboo subject and I don’t think it should be anymore. If I can force myself to share something so personal with the world then we all really should be able to at least talk about it at home with our loved ones. Love and peace 💜

AN INTERVIEW WITH EDITH – PDA FROM THE PERSPECTIVE OF A 10 YEAR OLD

Posted by juliadaunt on July 15, 2017
Posted in: ALL POSTS, AWARENESS, GUEST POSTS & INTERVIEWS. Tagged: , , , , , , , , , , , , , , , , , , , , , . 15 Comments

I would like to introduce you all to Edith in this post. Edith is 10 years old and has a diagnosis of PDA. She lives in Sheffield, UK with her Mum, Dad, younger sister Betty and dogs Rambo and Vera. Edith has been out of school and recovering at home since November 2016. Years of mismanagement of her PDA had led to total school refusal. Edith now wants to return to school and she and her parents are currently battling the LEA for a suitable school placement for her. Funding has so far been refused but the family are appealing the decision. The family have set up a Facebook group for parents in Sheffield who are in a similar position. You can apply to join the group here.

Edith has to be one of the most insightful and self-aware children with PDA that I’ve ever had the pleasure of meeting and getting to know. She’s a bright, kind, articulate and funny girl who has to date raised over £1000 for the PDA Society and you can visit her page here.

This post has been transcribed from a recorded informal interview that she and I had at my house. It’s written in the style it was spoken as I didn’t want to edit it so that perhaps it flowed better because I feared it would lose that realism and honesty. Edith has kindly taken part in this interview to help others better understand PDA and how it might impact on their own children. In this post you will be given the rare insight from the perspective of a child with PDA rather than the usual adults perspective, which is helpful, but it’s all from memory. Edith is living it right now – this is her childhood right now………

Edith wearing her Blue Peter badges. Her silver badge was earned partly for her fundraising

My parts of the interview are in bold and Edith’s responses are in italics. Edith has chosen all the images.

How has the time you’ve had out of school helped you? Well I’m a lot calmer and I’ve had time to kinda recover from all the stress and anxiety that I had at school and all of the demands. So time to like recover and calm down (smiles)

How has learning about PDA helped you? It’s helped me understand myself a bit more and made me more self-aware.

And does that self-awareness then help when you get anxious? Yeah.

Can you describe what a meltdown feels like and do you know when they are coming? Well sometimes I know when they are coming and sometimes it just happens and I’m not that aware that it’s going to happen.

What do you do when you have a meltdown? Well I find it hard to calm myself down and I get really angry and I’ve kinda like stopped getting physical and now I just really shout more when I get angry.

So you’ve learnt to have a more productive meltdown by not being so physical ? Yeah.


What can people do to help you when you have a meltdown? First off some space to calm down, then texting to find out the problem in a non direct way and then a hug when I’m up for it.

So do you think that your relationships, like with Mum and Dad, are better now you’re not at school? Yeah.

When you feel anxious what does it feel like? Well I definitely get more tense. I clench my fists and my jaw goes all tense and it’s like stress and also I sometimes feel a bit sad as well during it.


Edith and Rambo

What sort of strategies at home do you use or Mum and Dad use? When I’ve got something coming up I normally just need to know what’s going to happen so my parents explain it to me and I have to know everything about what’s going to happen. I need to know what’s going to happen so they explain it to me and like I normally get really anxious so I’ll have a hug with Mum or Dad and then afterwardsI normally just feel really good about it and that I did it and then I just watch TV until bedtime. Down time is really good. 

When you are feeling really avoidant and you’re not doing anything do you avoid all the fun things as well? Yeah.

Does that piss you off? Yeah it annoys me. I’m like I want to do it but I can’t do it. I get like this weird feeling in my tummy that’s a bit like a tummy ache and I’m like I want to do, oh I can’t do it anymore because I said I’m doing it.

It’s ironic because doing things you enjoy would actually help reduce anxiety. Yeah.

It’s quite funny that we can’t. Honestly there are some days I don’t get dressed and I just sit on the sofa and watch television and I do nothing all day. Yeah I always have those days.

And I think it’s important when we explain PDA to people and we say we avoid demands and everyone goes “oh, I avoid demands” or “I do that” because they avoid all the boring crap. Yeah.

But everyone does that, even us. That’s normal. No one wants to go to the dentist and will put it off and avoid it. No one wants to do the weekly shop.

No one wants to pay a bill they can’t afford but people need to understand that yes we avoid those things like everyone else but we avoid all the good stuff too and that’s when it gets sad. Yeah, I do that you know.

It’s not fair – we shouldn’t have to miss out. Yeah it’s sad.


Edith and Vera

Now you have a diagnosis of PDA do you feel happy about it? Yeah, because it explains why I’ve been feeling like this.

So do you think a diagnosis is important? Definitely, because it may not be the thing you want to hear but it helps you to understand yourself a bit more….

I just have to say this – this is spectacular. Honestly……wow! 

My ‘favourite’ topic is praise – do you like praise? Not particularly no. It makes me feel awkward like should I say thank you, do I even want to. Yeah it makes me feel all awkward.

It’s a very odd thing. Yeah

I’ve tried to put a finger on what it is about praise that is so….. Weird?

I think a part of it is if I say “oh really well done Edith!” I’m kind of implying a demand that you’ve got to do it again and do it just as well or even better. Yeah.

Or it could be that we just find that kind of direct compliment too kind of in your face…a bit too… It’s disturbing.

What do you say when someone says “oh really well done”. Err….(laughs)

And then I want to go and hide under a rock! (Edith laughs)

I think people should just say “cheers” or something like that. Or a thumbs up.

Yeah and I don’t like it when people clap. Oh no. It’s like, number one it’s another type of praise and number two it’s too loud. It gets in your ears. 

So your last school, what was it that you found that was a problem and what were they doing that was wrong? I enjoy maths and English and all of that, it’s just the way it’s taught to be honest and also the environment and all of that. It’s really noisy and busy. It’s got about 525 children in that school. Don’t expect me to go there.

So too big and the way they taught? Yeah, and very demanding.

So did they use more typical ASD strategies like rewards? They didn’t really do anything like that which was good because I don’t like them.

So were you like in a typical class and did you have any support? Not really. Well they did when I got my diagnosis. They did start to do a bit extra like they got a little tent so that if I needed timeout I could go into the tent in the stock cupboard! (We both laugh together)

Lovely! I know! 

Let’s put Edith in the cupboard! (Laughs) And also like because it’s a stock cupboard it’s where people store things so teachers go in all the time to get stuff. Keep popping in and out. I’m trying to have private time. 

That’s crazy! The whole of point of timeout is that you have space and time alone. Yeah…..(we both laugh) but when I started refusing to go. They did have a thing in the hive where all you did was sit around all day and got bored out of your mind and people came in who had like different things so you had this group that was so demanding as well. It was like “right we are going to do this today” and I was like no. So it didn’t fully help. 

Do you have problems making and keeping friends? Oh yeah I’ve always had problems with like friendships. Yeah I always…..I remember this particular big argument with me and my best friend and we just having a laugh and she jumped in a big puddle that she was not allowed to because there were cones around it and I said you look like you’ve wet yourself several times and she didn’t like that too much so she hit me so then we got into a massive argument, everyone was crowding around and we were just screaming at each other and then we just went off and like…to be honest I don’t really stop because with friends you think you can have a laugh and they won’t mind but when they actually do mind you think that they might just be a bit sarcastic or you’re not sure when they kidding or when they’re not because my friends are quite good at being liars. So yeah that then caused like trouble because I then misread what she was saying, which caused trouble. I’ve always had trouble with friends. Always had arguments. I remember this birthday party…..oh it went awful. It was my 9th birthday party and I invited some of my friends and I threw like a crazy string can at my friend and it hit his arm and I told another friend to piss off and I just got so stressed and I regretted it like so much but they all forgave me and like it was kind of like quite good.

Well it’s good that they understood. Yeah my friends are understanding. They are silly but they can be understanding.
So do you think that what happened at your birthday party was it because the whole big party thing was just too much? Yeah. My 10th birthday party was amazing! We went to this nice pretty make up/hair and nails salon and we got our hair, makeup and nails done and it was just me and my best friend and then we just went to a restaurant with my grandparents, my parents, her and my sister Betty and then she stayed for a sleepover and it was like perfect. I didn’t have a single part where I wanted to have timeout and it was really good.

So smaller is better? Yeah definitely. A smaller group of friends is really good but then if you feel guilty about not inviting everyone then just invite them round for tea another day – they’ll forgive you about leaving someone out.

I don’t know, when I was a kid there was never that that rule that you had to invite the whole class so you just invited the people you liked. (we laugh). I think we should go back to that personally because I wouldn’t want to have a party with 30+ people. Oh no. No thank you. I don’t want that. You always seem to have a kid in your class that you don’t like or even 5!

People say “oh it’s unfair” but I say that the dislike will be mutual so then you won’t get invited to their party either so then it’s fair. Yeah and if you did get invited then just turn them down! (laughs) you know, it’ll be fine. 


Okay I chose this photo! This is the cake Edith made all by herself for our interview/lunch 💜

You were saying how you felt guilty after you threw the can at your friend, do you say sorry to people or just leave it? Yeah I say sorry. Sometimes I just say “soz” so that it’s not that much of a demand because soz is quicker and you can just get away.

That counts. Yeah exactly. It’s got the “s” and the “o” in it! (laughs)

Do you feel empathy? Yeah I do. Can’t show it all the time but feel it. People show it differently.

Do you pick up on people’s feelings too, like their moods? Yeah sometimes. I feel bad sometimes.

As we’ve said you are out of school at the moment so what kind of things do you fill your day with? Erm sometimes I draw. Mainly because I’m out of school there’s nothing to do so I normally just sit around watching TV all day – so boring. Oh I’ve seen that one already….oh and that one….and that one too!

You should try doing it for 30 plus years! (Edith laughs) You’ve seen everything! There ain’t nothing that’s been made you haven’t seen at least 8 times! (Edith laughs)

Can you see yourself going back to school? Yeah. I can just imagine myself with friends at lunchtime and having a laugh. Inviting them to my house for tea. I really want that. I’m sad that they’ve said no.

Mum and dad are working on that. Yeah (smiles)

Where do see Edith in say 10 years? I’m hoping that I’ll be at university or something like that or already an illustrator. I really want to be an illustrator when I’m older.

So you want to be an illustrator so do you see yourself working for yourself and being your own boss? Yeah definitely. Yeah no ones going to boss me around! (laughs)

I’d like to see them try! I know!

If they do, can I watch? (Edith laughs and nods)

Can you tell me about your new fundraising ideas? At my old school they are having a Summer Fair on Sunday and I’m going to have my own stall there and I’m going to sell a lot of things so I’ve got different event cards so like thank you cards and happy birthday cards and bracelets and things like that. All that I’ve made. I’m going to sell all of them and whatever is left over I’ll put on my page if there is anything left over. My mum has made some things and so have I. 


Some of the lovely items that Edith made for me and like the ones she’ll be selling to raise funds for the PDA Society

So that’s it guys – I think you’ll all agree that Edith has achieved something very special here and will help more people than she thinks. I won’t praise her too much but I just want to say that I learn from you Edith while you learn from me and a BIG THUMBS UP! 👍 Oh and the cake was DEVINE! 😋

PLEASE SHARE 💜

IT’S BEEN A LONG TIME COMING aka DISCOMBOBULATED 

Posted by juliadaunt on May 9, 2017
Posted in: ALL POSTS, AWARENESS, LIFE IN GENERAL. Tagged: , , , , , , , , , , , , , , , , , , , , , , , . Leave a comment

This is my second attempt at writing this – my first attempt was ready to be published and then the gremlins struck and I lost it all. 😩 I took a break overnight and I’m back, with what I hope will be just as good a post as the last. 👍

Well I’m not really sure where to start. I still can’t believe that it’s been 7 months or so since I last posted anything! Amazing how time just flies! Some of you will know already but for those of you that don’t – we’ve moved to Nottinghamshire! Yep, it really happened……finally! We’ve been in a new home for just over 6 weeks now and we are settling in slowly but surely. I’m finding it more challenging than Paul is but then I guess that is to be expected if you think about it. I’m finding that everything is coming in circles – one moment I’m contented but then I remember we live here now and we aren’t on some super extended holiday and then the next moment I’m homesick thinking about all we’ve left behind and then I remember that this house is ours and I’m back to contented again and so it goes on. Thankfully the gaps between feelings of sadness are getting longer and longer each day so I know I’m going to be okay – it’ll just take a little while I guess. There will come a time when I hardly think about Devon and miss it but rather I remember it fondly but at the moment it just makes me sad. This is going to sound crazy I know but I really am missing Margo the “wild” duck, especially in the mornings, when she would often wake me up quacking for food. Sadly I have to report we don’t have ducks here. ☹️ I also miss the life we carved out for ourselves in Devon, the friendships we formed and the places we made our own. Barnstaple was my home for some 25 years – that can’t be replaced overnight. These things will always be important to me and it’ll take time to move forward. However I don’t miss our old house per se – I think the desire to own our own house was too great. I love the fuzzy feeling I get when I sit back and say “it’s all ours”. That’s a very comforting feeling. So I’m not entirely sure how I feel at the moment. Homesick, happy, contented, sad, disconnected and lucky are what I feel most of the time. I guess a better word to describe it would be discombobulated! Isn’t that a great word? That was going to be the title of this post but I changed my mind last minute, hence the ‘also known as’ bit as I didn’t want to lose that bit.

One of the big (and very exciting) plusses of living here are our fab new neighbours – PIGS! 🐷 Yep, that’s right! Piggies! 😂 The cats are quite bemused by them – I don’t think they quite know what to make of them. Paul and I on the other hand love it. I’m loving the feel of this little village even though technically I’ve not explored it much yet. It’s got the community spirit that poor old Barnstaple was losing. I’m going to drag my arse out at the weekend and go to a village coffee morning if it kills me. If I’m honest I’m not sure if I’m ready but it’s been 6 weeks and I think it’s about time. I’ve hardly left the house apart from to weigh-in at Slimming World, the odd trip to the shops and a couple of social things. I think it’s about time I mingled with people that I don’t know at all and try at least to get to know some local faces. I can’t hide away all the time if I want to be part of it out there. I might do some touristy things when we have our first weekend house guests in a few weeks. Wish me luck for the coffee morning……I might need it! 👍

So, other than packing, moving and unpacking, what else have I been up to? Well a couple of weeks ago I did something very special…..during the World Snooker Championship Paul and I popped up to Sheffield and I got to walk on the hallowed ground that is the Crucible theatre! 😊 For those of you that don’t know I’m a massive Snooker fan and I’ve always wanted to visit the Crucible but it’s always been too far away to be affordable but now it’s not! As for why it had to be the Crucible and not anywhere else: for me (and many others) the Crucible is the spiritual home of Snooker and certainly the only place that this particular championship should ever be held. Anyway, I digress. We didn’t actually have tickets so didn’t go to watch but I just wanted to be there during the tournament so I could say “I was there” and to soak up some of that awesome Crucible magic. 😊 Anyway whilst we were there I got to meet the legend that is Terry Griffiths!!! And as you can see I had my photograph taken with him….and we stopped traffic to take it! 😂 Thankfully Terry and I lived to tell the tale and as you can see from the soppy look on my face meeting him made my day!

Also whilst in Sheffield I got to meet the lovely Edith who’s 10 and also has PDA. It was a delight for me to meet her and I’m looking forward to meeting her and her family again in the very near future. 😊 It’s for people like her that I continue doing what I’m doing. Making a difference one day at a time – we can and we will make it better if we stand together. Everyone just needs to do their bit, like myself and Edith who also fundraises for the PDA Society. You can view her fundraising page HERE 💜

Now in other news: I’ve been asked to give another presentation at this year’s PDA Conference held by the National Autistic Society and I’ve more than happily said yes. The tickets for that event aren’t on sale yet but as soon as they are I will let you know. Also this coming Monday (15th May) is PDA Action Day hosted by the PDA Society so I’m holding a 2 hour LIVE chat on Facebook where you will be able to see and hear me speak about my experiences and you’ll also get to ask me your questions. For more info and so you don’t miss out click HERE –  I promise you won’t want to miss it. If you’d like to change your profile picture on Facebook to the special PDA PanDA one then you can do so HERE. Also please don’t forget to use the official hashtag #PDAday when raising awareness on the 15th so that the message really gets out there. Thank you 💜


I haven’t been completely offgrid for all this time. I’ve been using some of my time wisely to create some images to raise awareness and understanding and that people can share. Here are 3 of the most popular ones……


So I guess moving home and lots of demand avoidance is why it’s taken 7 months for me to post! 😂 No excuse really but then I guess you’ve come to understand and expect that posts from me are going to be patchy and perhaps not very timely! 😂 Anyway it’s done and my news is shared. Just one more thing before I go – apologies to everyone who has emailed and messaged me over the last few months and who I’ve not replied to. I’ve just simply not had the headspace to take on anything else. I will reply…..soon…….I promise. 💜

AN INTERVIEW WITH PHIL CHRISTIE

Posted by juliadaunt on July 29, 2015
Posted in: ALL POSTS, GUEST POSTS & INTERVIEWS, YOUR PDA QUESTIONS ANSWERED. Tagged: , , , , , , , , , , , , , , , , , , , , , , , , . 11 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.