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: , , , , , , , , , , , , , , , , , , , , , . 11 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 💜

Advertisements

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. 💜

PLANES, TRAINS AND PUBLIC MELTDOWNS

Posted by juliadaunt on October 5, 2016
Posted in: ALL POSTS, AWARENESS, LIFE IN GENERAL, MY MENTAL HEALTH. 8 Comments

Hello – It’s been so long since I posted anything for a number of reasons but mostly because of demand avoidance (well there’s a surprise!) but also time and the fact that I couldn’t think of anything that I considered worthwhile to talk about! A little bit of background is needed so I don’t confuse you all. This post was originally written whilst I was away giving a presentation on PDA back in July. I had planned to post it the day I got back but demand avoidance again put a stop to that. Even though it’s ‘old news’ now I still feel that it’s important to share as I think it highlights the most misunderstood and forgotten part of PDA and that’s meltdowns. I shall sum up at the end but for now enjoy…..

Wednesday 13th July 2016, morning
Well, I’m currently sat on a very bouncy train as I write this – not easy when you only use an iPad! Lol. Anyway it’s entertaining me….like when you try and apply makeup in a moving car! All good fun and also good for honing those fine motor skills. 👍 So where have I been? Where am I going? And why isn’t Paul driving?!
Well, I’ve been away in Dover for the past few days giving a talk. I had to take the train (although trains would be more accurate!) because Paul was away at RAF Fairford working for a week so I had to fly solo, pardon the pun! Lol. 😂 Anyway why am I writing this post now? Well if I’m honest it’s a combination of boredom and inspiration. I’m only 30 minutes into an 7/8 hour journey so I need to keep myself entertained but I’ve also been hit with a wave of inspiration: anxiety in public. I know I’ve posted about anxiety before but I make no apologies for doing so again. This is after all a blog about an ASD where one of the overriding traits is extreme anxiety as well as our old favourite: demand avoidance. So I’m now going to try and explain “anxiety in public” –  Basically I had my first meltdown in public for a very long time. Those with PDA reading this will no doubt be able to relate to just how awful that is but for those of you who don’t have PDA I shall try and explain. It’s mortifying and terrifying. We all get the extremeness of the anxiety felt by those with PDA but for me it’s worse in public. I’d almost forgotten that but I’ve had a stark reminder over the last few days! That’s what I want share now.

So on Monday 11th July (today is Wednesday by the way) I left home (Devon) for a long train journey to Dover to give a talk on PDA at a SEN Conference. Like I’ve already explained I had to travel alone as Paul was away. I thought I might struggle with the journey but I didn’t dream I’d struggle as much as I did. That did take me by surprise. Also when I struggled surprised me. I thought I’d struggle most with the London Underground part of the journey but actually that was the least of my problems. So I boarded the second train of the day at Exeter and BOOM it hit! I hit that wall. I literally couldn’t move! I was stuck in the joiny bit between the carriages (I’m sure it has a proper name but you all know the bit I mean). Now when I say stuck I literally mean stuck. It was like my feet grew roots. So I’m like what the fuck do I do now?! Everyone pushes past me and then before I know it the train is moving and I’m still stood there in that joiny bit. Now I’m alone there. My heart is racing and I’m sweating but still rooted to the spot. I lean sideways and look into one carriage and it’s packed and I swear it’s a mile long. I then look around the corner into the other carriage and it’s just as packed and seems just as long. The aisle also appears much narrower than it should be. Like it’s shrunk. I can’t go in there. I’ll get stuck. Trapped. By now I’m convinced everyone is looking. Judging. Fact is no one is. There’s no one else there. Just me and my anxiety. I open the window for some air. All I’m thinking is “breathe”. My chest feels tight and it hurts. By this point I’m crying. Come on Julia, get ahold of yourself! Breathe. Just breathe. I check the time on my phone – fuck me, only 10 minutes have passed! I’ve got another 2 hours of this. I don’t even have the comfort and option of getting off the train at the next stop because this train is the speedy one. The stops are Exeter (where I boarded), Reading and London Paddington. Great! Reading is over an hour away. Now I’m in floods of tears. As quickly as I wipe a tear away there’s another one on its way out. I’m sure people have noticed by this point because I’m rooted near the loo and there’s a queue of eyes. Some of them are bound to have noticed. It’s the law of averages surely. I’m now shaking and dripping with sweat. And crying. If I don’t stop crying soon I’ll end up with a bright red and puffy face for ages and then everyone will definitely know I’ve been crying. I check my phone again. Another 20 minutes have passed. Okay, so I’m 30 minutes into a 2 hour journey. That’s not too bad. It’s not ideal but it could be worse. Stuck/rooted to the spot for the remainder but it’s doable. It is better than the alternative. Walking into one of those packed carriages. So I look at my phones screen and see that my friend has replied to a message I sent before I boarded. It felt like she was offering me a lifeline. I reply and tell her I’m stuck and that I don’t know what to do. I tell her I’m scared and she listens. She gets me. She understands me. I don’t need to explain or justify things. She talks to me. Tells me it will be okay. She makes me smile. A virtual hand-hold – just what I needed. She enabled me to focus and think. So I follow her advice: I look out of the window and just breathe. I’d been trying that earlier but I just couldn’t – that breathing lark. It took someone else to tell me to just breathe for me to be able to do it. In, 2, 3. Out, 2, 3. In, 2, 3 and so on. Funny how the mind works (or doesn’t!). Anyway after about an hour total I finally get the courage up to stop the guard when he passes me again. I say again because he’s been past at least twice since I boarded. Anyway I stop him and hand him my Autsim Alert card and I simply say “help me”. Thankfully I’d put my train ticket in with my Alert Card earlier in the day just in case. He then took my case and showed me to a seat. It was as simple as that. So that was the outbound journey. Not perfect but I made it….just.

Where am I now in my journey? Well I’m a lot more than 30 minutes in where I started writing this. I’m now on that same train again and you’ll never guess what…..deja vu but worse! I hadn’t even set foot on the train before I started crying and forgetting to breathe. Dear god! What’s wrong with me. I force myself on board and then freeze. Here we go again! Another public meltdown. Now I hate myself for this part but I thought “why me”. I really did. Why did this have to happen so publicly…and twice! Why can’t I just board a train and find a seat like any normal person! Why must I have to burst into tears in front of half of London. I also (shamefully) thought “it’s not fair”. I want to be able to do the normal things like get on a train. I want to be normal. I hate having those types of thoughts. The self pitying type of thoughts. Woe is me and all that. Normally I “suck it up”. I deal with it. I’m tough and I can handle anything (apart from physical pain). I’m certainly not the type of person who cries because they are scared of boarding a train alone! I’m confident and bubbly right? Well, yes and no. I am confident and bubbly if I have someone I trust with me. I can’t emphasise that word enough. Trust. It can’t just be anyone. It can’t be a random on the street but it also doesn’t have to be Paul or even a close friend. It can be someone I’ve just met or, as in this case, the young man serving behind the buffet counter on the train. Someone who looks trustworthy or whose job it is to help. By pure luck I boarded in the buffet carriage (this fact is important but not just yet), so I board and head towards coach F, I’m teary eyed and scared but I’m okay. I think I’ve got this nailed. The slidey doors open and I walk forward about 10 steps into the carriage, I see a sea of heads, the air is still and hot, there are bags and cases sticking out everywhere, how can a train that was completely empty a few minutes ago already be this full?! The train looks so long and narrow again, I pause to scan the carriage for a seat. Any seat alone will do. Wait I can’t sit next to a stranger. I look but can’t see anything free. The train begins to move and I panic. I start backing out. I just can’t. I reverse as far back as I can go and end up back in the buffet carriage. Now this is where the fact I’m in the buffet cart comes in and also the young man. He saw me right away and asked me if I was okay. I just handed him my alert card and blurted out that I need help to find a seat. Straight away he told me it would be okay and asked me to follow him. He carried my case and took me through to first class. He stored my case and told me to sit down and to relax. Before my bum had even managed to warm the seat another gentleman had arrived with a refreshments trolley and he, upon seeing how upset I was, said to me that if I needed anything to just give him a shout, even if I only wanted someone to chat to. So all is well I think. I’m safe. It’s almost empty in first class and the air is fresh and cool (God bless air-con!). I relax. I breathe. In, 2, 3. Out, 2, 3. I’m going to be okay now. Just sit here and breathe. Simple really when you think about it. Well all good things must come to an end! The third member of staff I met was the ticket inspector (and whom I subsequently found out was also the train manager) and he was something else altogether! He saw my Alert Card but upon seeing my ticket announced loud enough for the rest of the carriage to hear that my ticket wasn’t valid and that I’d have to move. Through tears I asked him repeatedly to speak to the young gentleman who seated me here. After about the 4th time of my repeating this he finally relented and grabbed my ticket and Alert Card and stormed off to speak to him. A couple of minutes later he returned and told me that I could “stay here until I’d pulled myself together”. As he walked away he said that if I want to upgrade then I’d have to pay, again loud enough so that those around me could hear. I couldn’t face being a further source of entertainment for the people around me so I just left him to walk off and pretended to read my book like everything was cool. I was in fact more than happy to pay the extra but I wasn’t about to become another source of entertainment for those around me. So now I’m even more upset than I was before. I’m now sat waiting knowing that at any moment he’ll be back to get me to move and then I’ll back exactly where I started. Seatless and scared. A few minutes later the trolley gentleman comes past again and can see that I’m more upset than when he left me last. He sits down opposite me (table seating) and I explain what’s just happened. It was at this point that he informed me that the ticket bloke was in fact the train manager. I had to stop myself from laughing through the tears at this point! That rude and grumpy man is a manager! Well now I really have seen everything! The trolley man apologised and promised me that I wouldn’t have to move. I offered to pay the extra to upgrade but I was told there was no need. He was very sympathetic but in a non patronising way. He sat with me for a good 10 minutes. We just chatted about this and that, mostly how unfair it is that we can’t smoke on trains anymore! Boy I needed one at that point. With massive thanks to both the buffet and trolley men my experience wasn’t a complete nightmare but it was exacerbated by ticket man aka ‘train manager’ who interestingly enough was wearing a Mr. Grumpy pin-badge!!! 👍

So what have I learned? That I’m not made of stone. I’m vulnerable to meltdowns and that I can’t always stop them. I’m mortal to them. I think I already knew this but I tired to convince myself that I was past all that. I think I’ve spent so much time now surrounded by support and living in my ‘bubble’ that I’d forgotten that without all of that I can’t manage. That’s scared me. I don’t like that.

Could I survive without Paul? Yes, but my world would shrink massively, more so now than ever I think. He really enables me to have a life outside of the home. Without him I would hardly ever leave the house. Paul is much more than just my partner – he’s also my carer, my rock and my best friend. 💜

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: , , , , , , , , , , , , , , , . 1 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