Questions

All posts tagged Questions

I’ve done several book reviews in the past but I’ve never reviewed a children’s book….until now that is! My friend Jodie Isitt, from Autism with Love, has recently published her first book. Jodie is a mum of 3 children with autism (one with PDA) and has recently braved the world of writing books for children!

Layout and look

One of the things that I liked straight away was that the Autism with Lola book isn’t garish in its use of colours. The pastel shades are perfect – enough to hold a child’s attention but not so much that it gives you a headache! It was fun to read but still packed full of information that was clear and easy to understand. The illustrations are bold and clear and the characters have good facial expressions, which really help tell the story and get across the different emotions covered. I also like the fact that there are no page numbers to ruin the look of the beautiful illustrations. The book is also a good length – ideal for bedtime reading.

About the story

I can relate to Lola, although I hid/hide my sensory stuff! Or at least try to! The characters are cute and will appeal to both boys and girls. One important point to make is whilst the book covers sensory differences/sensitivities it didn’t dwell on the fact that Lola had Autism. This is important. One thing I’ve noticed with other books of a similar nature is that they try to pack too much information into the story so that the original message is lost completely. Less is more! The characters are cute so as to engage children. There’s also a section at the back for adults needing further information and support which is wonderful to see.

About the activity book

I’ve so far resisted doing any……just about! I love how it not only relates to the story book but also expands on it. It definitely opens up discussion and allows the opportunity to elaborate further. It’s much more than a colouring book and contains many different activities and is again fairly unisex. Definitely good for exploring empathy.

About the plush

The Lola plush is adorable and silky soft to the touch. Her tags are hidden away under her clothes so they don’t spoil the look. She’s the perfect size for small hands and has very tactile ears. The plush really helps bring the story to life and her pocket is an actual working pocket! Awesome!

So all in all I highly recommend this series of books and plush for little ones. I’ve never reviewed a children’s book before but I must say that I thoroughly enjoyed it! Let’s face it, I’m a big kid at heart! You can purchase the complete set, including the lovely plush bunny here and I can’t wait to read the next instalment!

Below is a transcript of yesterday’s (17th April) appointment with the psychiatrist. It was a very difficult appointment for me, even with the support of Paul and my advocate. I felt like I was on trial. We’ve put the more omg statements in bold but it’s all pretty awful. I’m not sharing this for sympathy or anything like that. I’m sharing to make people aware and to help them understand. Adult services are a joke and they don’t cater for PDA. If this doesn’t change soon then the system will be flooded with soon-to-be adults being forced into a system that doesn’t even try to understand them but instead judges them tries to change what can’t be changed and fix what isn’t broken…………..

*Firstly – wouldn’t shake advocate’s hand or greet us. We travelled in silence in the lift. She didn’t hold doors open for us, just let them fall back. One nearly hit Julia!

No “please have a seat” (especially to me and advocate)*

Dr Innes – (studying notes on screen) “You (Julia) may have cancelled several appointments [Julia cancelled only one!]. There may have been others cancelled as well. There is an enormous amount of documentation missing so until we have that, the assessment is not complete”

Dr Innes – “I want to check with you while your friend’s [our advocate] still here – is there anything in the background history that you would wish not to be discussed in front of her?”

Julia – “No”

Innes – “No? So she knows about all of it, does she?”

Julia: “Well if she doesn’t, she will in a minute!”

Dr Innes – “Had I received the information I requested five months ago, I would have been in a better position to refer you to our clinic that specialises in the prescribing of those drugs for a review of the matter”

Julia – “I’m not responsible for what the GP does and doesn’t do”

Dr Innes – “Indeed. Nor am I, actually. The most I can do is keep writing letters”

Dr Innes: “I am – not on the basis of the available information – convinced that the criteria for continuing a fairly high dose of a stimulant medication which is a controlled drug is actually being met and now I’ve committed quite a lot of time and effort thinking about this and getting further information. As far as I’m concerned, this is still an assessment that has not been completed but professionally I’ve been placed in a difficult position and I’m also aware that your interaction with GPs has had its difficulties and there have been a number of complaints and one change of surgery within the last couple of years – for what reason, I don’t exactly know. But what I’m saying – clinically, ethically, this is not an easy situation.”

Julia – “All this red tape stuff is nothing to do with me, I’m not – it’s not my problem

Dr Innes – “Well, in a sense it is your problem because you’re receiving this on the willingness of people to prescribe it. Now you’re 36 years old – most people of 36 even with a childhood diagnosis of ADHD are not still on Ritalin”

Paul – “Are you saying that this is something you can grow out of?”

Dr Innes – “What I’m saying is, this is normal prescribing practice and people do improve with age.”

Advocate – “But it’s not unheard of…is it? It’s not unique?

Dr Innes – “It’s not unique, no, but nor is stopping it at 16 that’s commoner, to still be on it at 36 a lot commoner” (we are aware this makes no sense)

Dr Innes – “How much do you weigh?”

Julia – “No one’s business!”

Dr Innes – “I see you’re drinking a can of Pepsi Max – can I have a look at it please?”

Julia *slams down can* “For…?”

Dr Innes – “Caffeine”

Julia – “Right…it has caffeine in it…”

Dr Innes – “How much energy drinks or caffeine-containing drinks do you drink a day?”

Julia – “Well, that’s my only drink. I have one tea in the morning and then Pepsi Max throughout the day, so it depends obviously on what I’m doing, how hot it is – it’s my main liquid so I can’t…

“Dr Innes – “Ok…this is 330 mls *still examining the can as if studying outer space object* It doesn’t say how much caffeine. It doesn’t actually say that, does it?”

Julia – “Well, it isn’t actually an energy drink…”

Dr Innes – “Well it has got some caffeine in it. Do you drink coffee or energy drinks?”

Julia – “No”

(following discussion about Paul helping)

Dr Innes – “How do you feel about that?”

Julia – “Fine, it’s just how it is”

Dr Innes – “Do other people help you in this way?”

Julia – “If Paul’s not around and I need help, then yeah”

Dr Innes – “How many people help you?”

Julia – “I’ve got a friend in the village who is on hand when Paul is away so if I need anything, day or night, I can ring her and she will come down. I’ve got a friend with a car who’s said that if the cats are ill, she will help.”

Dr Innes – “What do you do for them?”

Julia – “Friendship! It’s a two-way street…”

Dr Innes – “Ok. What do you actually do for them?”

Julia – *exasperated sigh*…”Well, we go places together, we talk – you’re asking me to define friendship?”

Dr Innes – “Yes…”

Julia – “Well, it’s two-way isn’t it. If one of them has a problem, then I will listen and try and help”

Dr Innes – “What about if one of them needed you to do something physically…like pick them up something?”

Julia – “Well, I’d ask Paul to do it, ‘cos I don’t go out on my own, so I couldn’t pick up something. And plus, they wouldn’t ask me to do that because they know I couldn’t, so… “

Dr Innes – “Ok. What if Paul wouldn’t do something that you wanted him to do?”

Julia – “But he would, so… *laughs*. That would never be a problem”

Paul – “…I think also what those friends give is a kind of atmosphere and an understanding of PDA that she doesn’t get too many other places…”

Dr Innes – “Mmm….”

Paul – “…and that’s worth its weight in gold”

Dr Innes – *subject-change!* “Do you understand why I referred you to an OT?

Julia – “No”

Dr Innes – “Ok. Most people’s relationships are a bit more two-way than yours– people can ask things of each other…”

Julia – *sighs* “Yep…”

Dr Innes – “You see what I mean? It sounds like you have the understanding that Paul will do absolutely anything that you ask”

Julia – “Mmm”

Dr Innes – “But you’re also saying that you can’t do these things yourself. If he didn’t do them, they wouldn’t get done. So that means he has quite a lot of power over you and I don’t know how you feel about that”

Julia – “Oh, for fuck’s sake!”

Paul – “Sorry, I… *speechless*

Julia – “I mean it nicely but if you knew Paul, you would know how ridiculous that sounds (laughing). He is my partner and my carer. It is no different than if I had a physical disability and I needed help. That’s not about controlling – that’s about somebody helping another person. It’s not a power struggle.”

Dr Innes – “Ok, I haven’t said it was a struggle…”

Julia – “Ohhhhhhhhh, for fuck’s sake… (laughs)”

Dr Innes – “The point of the referral to an OT is that you might be able to help…might be possible to help you do some of these things you haven’t been doing”

Julia – “I don’t do those things because I have PDA! So, sending me to an OT is like pissing in the wind. It’s not going to make any difference! If I can’t motivate myself and make myself do everyday tasks that everyone else does then I can guarantee you an OT will have no chance”

Dr Innes – “Let me put this another way to you. You’re saying that the issue is basically lack of motivation”

Julia – “No!!!!!!!!!!!!! Uh… Do you know anything about PDA?”

Dr Innes – “I deal with human beings, more than I deal with conditions”

Julia – “No…do you know anything about PDA?”

Dr Innes – “People don’t want to do things, so they don’t do them”

Julia – “That’s got nothing to do with… I avoid everything, I avoid things I enjoy, I avoid things I don’t (enjoy) – I’m sure you do, everyone does. But I avoid EVERYTHING and it isn’t a choice! It’s not a conscious choice. If you knew about PDA, you would know that and you would know how ridiculous you sound”

Dr Innes – “You think other people have conscious choices?”

Julia – “Yes, when it comes to getting up and getting washed and dressed. Yes – they either do or they don’t. You made a choice this morning to get up and get washed and dressed. I had to physically force myself to do that and it’s not just because I‘m here – I have to do that every time I go out. I don’t get washed and dressed unless I’m going out so I avoid that problem.”

Dr Innes – “Hmmm. What do you think that the correspondence that should be on its way is going to say?”

Julia – “(exasperated) I don’t know what she’s sending, so how would I have any clue?”

Dr Innes – “Well, it’s about you – it’s a large volume of correspondence about you, isn’t it – what do you think it’s going to say?”

Julia – “Well, if you choose to read it, then you’ll find out about PDA! And ADHD. And you’d know about my diagnosis, or re-diagnosis from the Maudsley…”

*Conversation about chasing up docs..*

Dr Innes – “Do you think there’s any input other than people doing everything for you that’s going to make any difference to this?”

Julia – *sighs*

Dr Innes – “Do you even want to make difference to it? I mean, I think that’s a reasonable question under the circumstances because we’re only in the business in psychiatry of providing inputs that change something”

Julia – “ASD is not a mental health problem. You are sat in front of me trying to cure autism!

Dr Innes – “Err, no I’m not, actually…”

Julia – “Well, you are, because PDA is a form of autism. You want to know if I would like to be able to do these things for myself. Well that’s like asking somebody who’s paralysed from the neck down if they’d like to walk. Theanswer would probably be yes but it’s an irrelevant question because it won’t happen! It can’t happen (further example…blind people)

Dr Innes – “First of all, there are people with high spinal injuries who are paralysed at the point of injury who do manage to walk again but it takes a lot of work – it’s not comfortable. Secondly, some people will gain worthwhile function and independence even with physical disability – there is an issue what’s biologically possible…

Julia – “(cuts off – had enough!) Do you not think I’ve tried in 36 years on the planet”?

Dr Innes – “I’m sure the correspondence…”

Julia – “No! Do you not think I’ve tried personally to help myself over 36 years?! Cos I’ve certainly had fuck all input from you lot!”

Dr Innes – “I think we need to get back to the previous question about the value of input. Now I do see people with typical autistic disorders and the reason I see them is because either we (inaudible)…or we are providing input which is useful. If there’s nothing useful that can be done we don’t see them because it’s not a sensible use of this resource and it’s not a sensible use of their time. Most of the people I see in this clinic have got or have had in the not too distant future some form of identifiable psychiatric disability for which they’re wanting help to change…”

Julia – “I’m here for ADHD which is also not a psychiatric condition but there we are!

Dr Innes – “Well, you may not feel it’s a psychiatric condition but the medicationprescribed for it acts upon the central nervous system and after the age of 18 I think can only be prescribed by psychiatrists.”

Julia – “Still not a psychiatric condition but there we go…”

Dr Innes – “There are strict regulations about controlled drugs”

Julia – “Well, you follow your rules and I’ll follow along”

Dr Innes – “My rules about this are I expect to be receiving that correspondence within one month...”

Julia – “Don’t give me a deadline! What am I supposed to do – go into the surgery and get it myself and bring it up here?”

Dr Innes – “The GP will not do that…”

Julia – “Well, exactly! Why are you giving me a deadline? Get on the phone to her and give her the deadline!”

Dr Innes – “I will be doing that in the letter I send them”

Julia – “Cos I’m not having any input between you and the doctor – if you two want to argue the toss over who should send what, that’s between you two!”

Dr Innes – “Do you not think there’s a bit of a discrepancy between you saying you can’t do anything at all and you spending such a lot of time on this issue?Trying to persuade me to prescribe something that I’ve already told you…”

*all speak at once – drown her out*

Julia – “Are you going to prescribe Ritalin today?”

Dr Innes – “Yes but for one month! And then I will see what evidence there is…”

Julia – “Well then you can pick up the fucking pieces after!”

Dr Innes – “What pieces do you think there are likely to be?”

Julia – “When my life disintegrates before us. We can all sit back and enjoy that”

Dr Innes – “What would happen to your life?”

Julia – “I wouldn’t have one.”

Dr Innes – “Ok, how would it be different to the life you’ve got at present? What would you expect to see changing?”

Julia – “Well, I would have no friends, no relationships, I wouldn’t be able to go out or enjoy myself”

Dr Innes – “You don’t go out!”

Julia – “No no…I do go out. I don’t go out on my own, without support.”

Advocate – “But I also think what’s missing there is that Julia has achieved a great deal with the medication and with Paul’s support and I think that will fall apart completely without that. I don’t think you’re seeing a picture of how Julia is with the medication

because we’re getting bogged down with details which aren’t necessarily giving you a picture.”

*Conversation continues…*

*Julia describes unmedicated Julia…*

Julia – “Ritalin gave me my life back and you’re expecting me to say ok, fine, take it away”

Dr Innes – *Asks new question (unrelated)*

Julia – “I love the way you glossed over that bit (Dr Innes glossed over this comment too!)

*Talked about how Julia fills her time. Advocate was explaining what Julia does when Dr Innes interrupted…

Dr Innes – “Can I stop you here from a moment. If your friend had not said this, what would you have done?”

Julia – “I’m closing down, so nothing.”

Dr Innes – “Right”

Julia – “I’ve had enough”

Dr Innes – “Ok. That’s fine”

Advocate – “You’re in defence mode, aren’t you – I can see that”

Julia – “I’m nice and angry, yeah!”

Dr Innes – “So the Ritalin doesn’t prevent that?”

Julia – “No, it enables that!”

Dr Innes – “It doesn’t prevent you getting angry?”

Julia – “Well, no!”

Dr Innes – “If you go to a meeting and someone asks you a question, who responds?”

Julia – “Me! (surprised!). They don’t piss me off, though…you do!”

Dr Innes – “But sometimes you must be challenged….”

Julia – “Not like you do! They don’t sit there and pick you apart. And fuck about with your life!”

Dr Innes – *interrupting* “How do you respond to questions?”

Julia – “…and make threats”

Dr Innes – “You can respond to questions, though?”

Julia – “In a normal situation, fine.”

Dr Innes – “Ok, so it’s not that they’re saying, ooh we’re asking Julia, who’s that man next to her answering for her…you can do that?”

Julia – “Do you have to sound quite so surprised?!”

Dr Innes – “But I think it is worth commenting…”

Julia – “I’m only defensive now because I’m sat here in front of you”

Dr Innes – “Hmmm”

Julia – “I don’t like you and I don’t like psychiatrists, so why should I be respectful of you when you’re not respectful of me?!”

Dr Innes – “It’s not actually an issue of respect”

Julia – “It bloody well is!”

Dr Innes – “Now, you may well not like psychiatry…”

Julia – “PsychiaTRISTS…I have no problem with psychiatry”

Dr Innes – “People don’t have to like mental health professionals”

Julia – “I do if I’m supposed to see them!”

Dr Innes – “Well, you’re making it quite clear the only reason you’re seeing anyone is for a prescription. I hope I’m making it quite clear that there are real professional…”

Julia – “I don’t need you lot coming into my life again and dicking about and messing about with things.”

Dr Innes – “You will not be having prescriptions for this type of medication unless people understand what is going on in your life”

Julia – “But you DON’T understand! That’s the whole point. You’re asking me if I have a go at people at meetings – well of course I don’t because I wouldn’t still be on the committee. “

Dr Innes – “No – nor if you couldn’t answer relevant questions”

Julia – “So, if other people treated me the way you do, then no I wouldn’t be on the committee”

Dr Innes – “And the sort of questions I’m asking about your functioning and your symptoms are exactly the same questions I ask other patients with ADHD. Whether they’re 18 or whether they’re 14”

Julia – “That’s why your reviews are so wonderful!”

Dr Innes – “Well (more glossing!) – those are the sort of questions that a responsible psychiatrist would be asking”

Julia – “Yes but if you knew anything about PDA, you’d know how to phrase those questions”

Dr Innes – “Well”

Julia – “Well…”

Dr Innes – “…I think that (stutters) the difficulty is some questions are hard to answer. Now, what makes them hard to answer is worth thinking about.

Julia – “You should so go into politics! Your ability to not answer a question and actually answer it with another question is…hats-off!”

Dr Innes – “If people don’t answer questions, you wonder why they’re not answering”

Julia – “I’m not answering them because I don’t want to”

Dr Innes – “Fine”

Paul – “Another aspect is that you’ve said it will only be another month of prescription so why would you now go into a line of questioning that’s irrelevant? With respect…what’s the point?!”

Dr Innes – “Because the – (finds words) – in order to prescribe the medication for a condition, you need to establish the state of that condition. I would have thought that was obvious”

Julia – “Yep“(sarcastically)

Dr Innes – “The normal response to how are you doing, what are your symptoms is to tell you how…”

Julia – “I have!”

Dr Innes – “Not to complain about the question, to answer it”

Julia – “But do your patients normally have ADHD and PDA?”

Dr Innes – “Erm…I have several patients with ADHD. Patients with PDA tend not to, they tend…if it exists – it’s a disputed category without any clear standard treatment guidelines.”

Julia – “It might well be but my diagnosis stands, unless you’re another professor you cannot undo the diagnosis. You can diagnose alongside and you can add in all sorts of other diagnoses if you want but you can’t undo it”

Dr Innes – “Hmmm.”

Julia – “So, tough shit on that one, love!”

Dr Innes – “But, within our service and within many other services I would think there is nothing specific for the condition involving basically not doing very much at all”

Julia – (laughs)

Dr Innes – “We look at people’s motivation to change, whether we can provide anything that will help them change but if there is no…”

Advocate – “So, you’re saying you have a condition which is about motivation not to do anything at all?!”

Dr Innes – “Yes”

Julia – “So, laziness?”

Dr Innes – “Well, you could formulate it as laziness. I haven’t actually done that...erm but I think if…”

Julia – “What is wrong with me then, if it’s not PDA or ADHD?”

Dr Innes – “Well, the difficulties you’re describing which are interpersonal, difficulty in managing your emotions and behaviour, difficulty in responding to what most people would call ordinary demands of adult life and settings – I think you ask a great deal of other people and it’s clear there are limits to what you can provide in return. I think that it’s most appropriately conceptualised as your personality…”

*Advocate – stresses how much Julia does and the impact it has…*

Dr Innes (to advocate) – “And presumably she’s told you about all of this?”

Advocate – “Yes! And I can see it as well”

Dr Innes – “So, one of the things you’re doing for her is saying something that she might otherwise have said for herself”

Advocate – “Yes, if she was not in a stressful situation. At the moment, the way that Julia reacts is in fight and flight and the only different things that are happening is she’s not yet flown, which I’m quite surprised at…”

*Advocate: continues to stress the positive impact Julia’s had on community in short space of time…

Dr Innes doesn’t acknowledge this and rambles on about the lost OT referral…*

*Dr Innes’ phone rings. She cuts Julia off, answers without excusing herself or apologising afterwards…*

*Dr Innes continues to ramble on about clinical reasons for stopping Ritalin suddenly (e.g. heart risk)*

Dr Innes – “If there is no psychiatric reason to continue it, it will be withdrawn”

Julia – “So based on all that, you don’t think there is a psychiatric reason to continue?”

Dr Innes – “I’m sceptical but I’m awaiting further information”

Julia – “Wow…”

Advocate – “And is that because of the things that we’re saying she’s able to do?”

Dr Innes – “No…it’s not only that.”

Julia – “So what makes you think I don’t have ADHD then?”

Dr Innes – “Hmmm…even if you had a clear historical account of ADHD, at the age of 36 – I’m sceptical”

Julia – “It’s a lifelong condition!”

Dr Innes – “Hmm, well, people’s brains change with age”

Julia – “Yeah but…it’s a lifelong neurological condition!”

Dr Innes – “Um…”

Julia – “Are you up to date on research?!”

Dr Innes – “People’s brains change with age”

Julia – “Yes they do but are you up to date with research?!”

Dr Innes – “People’s propensity to develop complications…”

Julia – “The NHS website who you work for – their website says it’s a lifelong neurological condition. I think it’s quite funny!”

Dr Innes – “People’s personalities, cognitive abilities and the physical structure of their bodies change with age – what’s appropriate at one age is not necessarily…”

Julia – “And you’ve known me for how long and decided that? Without reading all the stuff”

Dr Innes – “I haven’t had it to read”

Julia – “But you’re making this assumption based on no evidence because you haven’t had any. You’re putting your cart before your horse!”

Dr Innes – “Right (moving on!). There are several other things I need to do and you’ve already overrun the appointment time so we’ll finish there and I’ll give you one further prescription and I’ll require the trust or if necessary the CCG to update me about what’s happening with your request for a change of consultant because they’ve not done that.”

Julia – “Again – not my fault”

Dr Innes – “No but my professional responsibility’s here and these include the need for extreme care about the prescribing of controlled drugs. So, I‘ll try to see you again in about two months”

*following some debate, the next appointment is now in three months. Additional debate about prescribing of Ritalin follows…*

Dr Innes – “I’ve done all I’m going to do about this today, so can you go downstairs and book your next appointment”

Julia – “And the prescription?”

Dr Innes – “Well I’ll write it and it’s been uploaded by the secretary”

Julia – “How long will that take?”

Dr Innes – “If I can start in a couple of minutes, I’ll start in a couple of minutes! I need to go out and get the prescription pad before I can do that”

*No official close to meeting and no goodbyes – we simply walk out*

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 💜

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

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

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

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

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

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

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

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

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

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

How helpful do you think a PDA diagnosis is?

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

What is your favourite PDA trait?

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

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

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

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

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

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

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

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

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

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

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

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

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

4. What is your ‘favourite’ PDA trait?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I was pleasantly surprised at just how much I enjoyed this book. This book written by Ruth Fidler and Phil Christie is a great addition to the PDA library. It’s aimed at children aged 7+ and is written from the perspective of Issy, who is 11 years old and has PDA. Not only could I relate to just about everything that the character of Issy talked about but I also found it much more user-friendly than other “medical” books on ASDs. I have an appalling concentration span but I had no problem with this book. It was nice to not only read a book that was factually correct but also portrayed PDA in such a positive light. The more of us there are out there spreading the word the better! 😊

Like I’ve already said, most of the book “rang true” with me but I do want to focus on a few bits that I think are important to share with you all. I shall do it in page order so I can keep track (the notes I’ve made whilst reading are a bit messy!)

On page 25 Issy talks about some of the excuses that she uses when trying to avoid doing things. They all rang true with me but the ones that stood out for me were the ones that I still use now! (or variations of). Namely, “the cat doesn’t like it when I tidy my bedroom” and “I have just painted my nails and I don’t want to chip them” 😜 These are things I say quite often. Lol. I often just say them to myself. I won’t vacuum if the cats are asleep so I don’t wake them and newly painted nails is my excuse for a lot of things! Lol. Another that stood out for me was, “I read that if you don’t wash my hair for long enough, it will clean itself” – as a teen I once went 6 weeks without washing it because I’d heard the same thing. Sadly it didn’t work! Also on page 25 Issy talks about how when she is asked to do something she “…gets totally focused on not doing that thing”. For me it’s exactly the same. Some days when the demand on me is too great I quite literally can’t get past that and the avoidance takes over the whole day.

On page 30 Issy writes, “…I don’t like routines to get boring but I do like to know what to expect. I like it when my day is explained so I’m prepared for any changes or choices in that day”. This I can completely relate to. Routines bore the hell out of me and do in fact hinder rather than help me. I find that something too structured actually increases my anxiety and becomes too much of a demand. Nothing in my routine is ever set in stone. Flexibility is definitely the keyword here.

On page 32 Issy talks about how she manages her schoolwork and the fact that she has an “on pause” folder for work that she is unable to complete at that moment in time. Boy oh boy! My whole life is an “on pause’ folder! Lol. It would be quicker and easier for me to list what I haven’t started yet than it would for me to list the currently underway stuff! 😜 Like Issy I too find it easier to be able to dip in and out of projects etc rather than feeling forced to do it all in one go. I often write a bit of blog, reply to emails, carry out my admin duties, do some knitting and then repeat. It helps keep the pressure off a bit but things still get done…….eventually in some cases! Lol. I’m not one for sustained spells of concentration either so it’s a win-win situation for me.

On page 34/35 Issy talks about how important it is to her to “…be around people who make me feel safe and understand me. I call these people my shields.” This really rings true for me. I’ve referred in the past to Paul being like my “portable bubble/safety blanket.” It seems that similar can be said for Issy. For me situations that I would normally find overwhelming or impossible are more manageable with Paul by my side. I’m also not as scared to try new things when he’s with me. He really has helped me to open up my world just a little bit more and “live a little”. It’s not just Paul that facilitates this for me but a multitude of different people, just like it is for Issy. I’ve also, with age and a lot of practice, learn to do this for myself if needs be.

I know I’ve touched upon this subject in other posts but I felt it was too important not to mention again. On page 36/37 Issy explains how praise makes her very uncomfortable. This seems to be very common amongst us folk with PDA. For me it’s not only a self-esteem issue but it’s also the implied demand to be able to do the same thing, just as well, every time which for me, and others with PDA, is, at times, unachievable.

On pages 38/39 Izzy describes her sensory issues and I want to share with you all one thing I’ve found extremely helpful when I’m in a smelly place, such as a hospital or airport, and that’s to carry with me a small scented candle that I don’t light but I do sniff it. It helps block out the nasty smells and helps to focus my thoughts a bit more so I’m able to stay in control. It’s not only useful for smelly situations but also for anywhere where my anxieties are up and I need to stay in control and be “normal”.

On page 42 Issy talks about how meltdowns make her feel but what stood out for me most all was “…sometimes my family or my teachers say they feel like I’ve over-reacted to them when I have a problem doing what they ask me. They find it hard to accept that there some days I just can’t. These are not good days and the more they ask me, the more I get stuck…” I can relate so much to this. So much so I shed a little tear whilst reading it. Sometimes it’s like that for me. For me though I think a lot of the pressure I feel is also self-imposed because I know that’s how they felt last time so I assume it’s the same the next, which of course isn’t necessarily the case. This can, and does, cause me a lot of problems.

From page 44 onwards are some extremely useful and insightful strategies for managing someone with PDA. Again, like Issy’s part, it’s clear and easy to read and in PDA/ADHD-friendly bitesized bits. 😊 It strange to read about strategies for basically managing myself but it’s also extremely interesting. It helps me to understand why I do what I do and why those, in the know, around me do certain things.

The authors, Ruth Fidler and Phil Christie, are both experts in their field as far as I’m concerned. I’ve had the pleasure of meeting and working with them. They have a wealth of experience and knowledge that we can all benefit from. All in all this little book was a delight to read. It’s both informative and simple. Its perfect for explaining PDA to your child with PDA and their siblings/friends but it’s also great for adults too.

You can order your copy HERE

Thanks for reading. 💜

Jane Sherwin’s account of life with Mollie, her daughter who has a diagnosis of PDA, is both extremely moving and informative.

Once I picked it up I was unable to put it down. As someone with PDA and with there currently being few books available about PDA, especially from the perspective of someone with the condition, it’s lovely to be able to relate and feel a sense of “fitting in.” Mollie’s journey continues to influence and inspire me. It really is a great addition to the ever-growing library of PDA books and resources. 😊

My hope is that this book will help to highlight just how difficult life with PDA is, both from our perspective but also for those around us, and open a few eyes to this very real condition. Life with PDA is no picnic but with greater acceptance and understanding things can and will improve.
This book not only gives a very personal account of one family’s journey but also gives some useful strategies, tips and above all: hope.

My Daughter Is Not Naughty is beautifully written, witty and takes you on Mollie and her family’s journey through heartbreak, triumphs, struggles, diagnosis and misdiagnosis and the eventual progress that Mollie has made. It truly is a must-read.

Buy your copy HERE

Thanks for reading 💜

The WordPress.com stats helper monkeys prepared a 2014 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 9,600 times in 2014. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

	Kerry McQuade-Mallon on AN INTERVIEW WITH PHIL CH…
	Nick Cahill on PANDEMIC CHRISTMAS, PART …
	Lapellar on ISOLATION HEAVEN
	Diana Bright on ISOLATION HEAVEN
	juliadaunt on ISOLATION HEAVEN
	Vicky Thompson on BEAUTIFUL COREY
	juliadaunt on CRAP START TO 2020!

Me, Myself and PDA

Questions

All posts tagged Questions

BOOK REVIEW – AUTISM WITH LOLA

WELL THAT WAS FUN!

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

AN INTERVIEW WITH RUTH FIDLER

AN INTERVIEW WITH PHIL CHRISTIE

YOUR PDA QUESTIONS ANSWERED (part 6)

YOUR PDA QUESTIONS ANSWERED (part 5)

BOOK REVIEW: “CAN I TELL YOU ABOUT PATHOLOGICAL DEMAND AVOIDANCE”

BOOK REVIEW: “MY DAUGHTER IS NOT NAUGHTY”

2014 in review

Like On Facebook

Follow me on Twitter

Blogroll

Recent Comments

Recent Posts

Follow Blog via Email

Tags

Categories

Blogs I Follow

Top Rated

Archives

Blog Stats

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Follow me on Twitter

Blogroll

Recent Comments

Recent Posts

Follow Blog via Email

Tags

Categories

Blogs I Follow

Top Rated

Archives

Blog Stats