18 January 2018

Pathological Demand Avoidance - The Control

My daughter was diagnosed with Pathological Demand Avoidance in November 2017, although we always suspected she had a PDA profile we decided to have a private assessment done to confirm in the hope that more people would understand her and be able to help her grow to her potential.

Pathological Demand Avoidance is an autism spectrum condition, which presents differently to other sub – types, so differently in fact that the “normal” ASC - Autism Spectrum Condition strategies aren’t effective for a child with PDA. This is a whole new ballgame, totally different strategies on a whole new level that will completely question the parenting style that you envisaged.

Pathological Demand Avoidance is identified by the persons anxiety driven need to be in control and to avoid demands, whether they're from people or self-imposed demands. Simply, it’s a catch 22 situation that requires a lot of detective work, a complete overhaul of your learnt language skills, and the ability to connect with your child in such a way that you can predict their every thought or feeling before they even know what it is.

Lola suffers with extreme anxiety when she isn’t in control of ANY situation, which results in her becoming extremely demand avoidant. Its tough for us as a family, but even more so for her and I simply cannot imagine feeling so anxious that I wasn’t in control - that I would avoid doing things to such an extent that I even miss out on the things I enjoy most. Can you imagine that?

It’s heartbreaking at its best and devastating at its worst.

But there’s a problem that many families like my own face, which leaves us unable to socialise, unable to participate in typical family outings, like the park, or a restaurant, soft play centers or swimming. Every kid loves doing those things right? So does Lola, but she has many obstacles that she needs to overcome to be able to manage these things without sabotaging it with her anxiety driven need for control.

There are two different types of things that I am talking about here, and one group of controlling factors include things like:

· What shall I wear?

· How shall I do my hair?

· I want to choose some of my brother’s clothes but he wont let me.

· Which car seat will I sit in?

· Is mum or dad driving?

· I NEED mum to drive.

· Which place are we going to?

· I NEED to choose the place.

· I need to transition between:

1. Bedroom and downstairs

2. Downstairs and the car

3. The car and the place

4. The place and the car

5. The car and the home

6. The downstairs and my bedroom.

· I am time constricted and I know I need to leave at a certain time but because I get distracted easily and there is a time limit I’m struggling to even choose what to wear.

All of these are perceived demands. She knows in her head that we are going to ask her to do these things so that we can make it to where we need to go. When she is too anxious we have to give her that control to a certain extent to reduce those anxieties for her to be able to take part in family outings and the things that she loves to do.

However, with Lola, and I don’t know if this true for any other children or adults with PDA, if she is given too much control and not enough choices her anxiety will worsen. So we need to make sure that her choices consist of no more than two things that she will prefer to do. By giving her choices we know that she will make a decision that we will all enjoy and she thinks she is in control. When she has made that decision and she feels more in control her anxieties decrease and we are able to transition relatively smoothly.

I say relatively because there is also another type of demand that she is unable to have control of.

The Environment.

Now this can be a tricky one because when you also factor in the sensory processing difficulties behaviours in the environment can be a bit tricky.

· Sounds

· Too many people

· Too many people talking

· People sitting behind her – she cannot see them but she knows they are there and she needs to be in a position that she’s comfortable with because she cannot predict what will happen.

· Where we are seated.

· How long we have to wait for a table, or a swimming session.

· How long our food will take.

· The expectation that she needs to stay seated.

· Can she use the toilet when she wants to?

· Smells

· Loud music in restaurants

· Changing Traffic lights

· Wearing a seat belt

· The direction we need to take and the traffic.

· The weather.

So you can see that for a child with extreme anxiety and demand avoidance that accessing the community can be quite difficult. And when you add in the fact that PDA can quite easily be confused with bad parenting/naughty child it makes situations even more complicated, because quite often you will find that the parent also suffers with anxiety. The people around us could lessen this kind of anxiety. Should we encounter less ignorant or factually incorrectly opinionated people and more understanding and aware people out there on our travels it would be so much easier to enjoy life as a family.

More often than not it is this factor that keeps us isolated and lonely because it exacerbates the child’s anxiety.

Lola has always been very controlling. I had my own personal “light-bulb moment” when she was four and a half years old, however she had this ability to lull us into a false sense of security every so often that made us question our belief that she was even autistic. I remember one year, just before she was diagnosed with Atypical Autism and the ten weeks leading up to that assessment where we were completely stumped. She was calm, and adorable, and her behaviour was quite literally perfect. The sudden crash of anxiety brought us to a surprising reality check. The unpredictability of her behaviour was exhausting. As a whole family we were quite literally treading on eggshells and she could explode at any given time. Normally in the home or the car after school but always away from prying eyes. Which made it extremely difficult for people to understand or believe even.

Given the fact that many professionals believed she was just naughty, I was constantly questioning myself and so this made it really difficult for me and the family to adopt a consistent, demand free approach that would help reduce her anxiety levels. We were in limbo and it was difficult.

Had we been trusted and believed from the very first time that I questioned her behaviour we would be in a very different place now. I believe that this is just the beginning for Lola and the fact that she is in a fantastic placement with a fully supportive teacher who is pro active in learning all about Pathological Demand Avoidance means that we can finally start working with her so that she can finally start to enjoy her life and learn all about society. So please if you are reading this and there are children who you’ve categorized as naughty and rude, remember that every behaviour is communication and some children like my little beautiful Lola expresses communication differently and sometimes negatively but she isn’t naughty. She isn’t rude, or doing things on purpose she just need a bit of help to reduce that anxiety so that she can control her behaviours better.

We had Lola’s private assessment completed by Dr Judy Eaton from Help for Psychology (whom I share a last name with) and I regularly use the The PDA society website for up to date information, and of course not forgetting the lovely Julia, who is an adult diagnosed with PDA for her amazing images that she creates for her own website Me, Myself and PDA.

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5 November 2017

Marvellous Monday - Talking without words: Communication and Autism

Kieran Rose Bio

A lifelong campaigner for Autistic rights, Kieran Rose has turned his passion for writing to good use, focusing on Advocacy and Acceptance for Autistic and Neurodiverse people, with his blog www.theautisticadvocate.com

The freedom for Autistic people to speak for themselves and be heard is paramount for Kieran, mostly due to the fact that he has spent his whole life immersed in Autistic life and culture with Autism diagnoses for himself, much of his family growing up and now two Autistic children of his own.

Kieran lives in Durham, England, with his wife, Michelle, where they run their Marketing Consultancy: www.custardandbear.com (With a little help from their three children, Quinn, Albie and Olivia). The whole family all live in a happy bubble of routine, Sensory overwhelm and underwhelm.

When Jodie asked me to write an article on Communication and what, growing up, would have helped me, I kind of gulped. If you’ve read my Blog, you’ll notice I talk in the abstract often and include very little detail about myself. That, I think is related to the trauma and abuse I received as a child. Most of it was unintentional, some of it was done with love, but all of it is relatable to the experiences of Autistic kids all over the world and throughout history. We are not understood, so therefore Allistics (Non-Autistics), think it’s acceptable to try to mould us into what they would deem as ‘normal’ children and don’t realise that it’s unacceptable to do this and even harmful.

So writing about this stuff is an extremely difficult thing to do, which is why I’ve avoided it.

So, thanks a bunch Jodie! (Oopsie)

Seriously, thank you though, you’ve kind of unwittingly pushed me into writing stuff I need to write about and I think others need to read:

From the age of around 4 or 5, I remember dragging a chair from my bedroom, across the landing and standing on it, looking out the window onto the street below.

The house I lived in was on a row of houses called a crescent but it was more like a giant oval roundabout with houses on the inside and houses on the outside. It was a safe place to play, like a mini estate, with only the people who lived their driving round the one way system. So, as you can imagine, there were a lot of kids playing on it. There were bikes and skateboards strewn everywhere, cricket, tennis, football matches, giant games of tag, hopscotch, skipping ropes. A car entered the crescent and everything got picked up and dumped on the verge, then brought straight back into the road once the car had passed.

All weathers these kids were out there, jumping in the giant puddles in the Spring rains, running around in shorts when the sun blazed. And all weathers I watched them. Stood on my chair and studied the ebbs and flows of groups of children that ran and ran and that looked like flocks of birds, or a school of fish, the unspoken unanimous movement as they gathered their things out of the path of an oncoming car and then flooded back out in to the road when it rolled on.

I ached for them to knock for me, to lure me into this bedazzling world of movement and noise I watched unfolding before me every day and, they often did. I would watch them walk onto our drive and my heart would start to pound and hammer in my chest, my hands would involuntarily curl into tight fists, my fingertips, with nails bitten to the quick, pressed hard into my sweaty palms and I would sink onto the chair, knees up, as small as possible.

I’d hear the knock on the door, the noise reverberating, echoing around inside my head. My thoughts frozen in that cavernous space so usually filled with rumbling gears and constant considerations and memory, allowing the knock to bounce around getting louder and louder until it matched the thumping of my heart and two became one, a physical BANG, BANG, BANG.

My Mum would answer the door, there’d be a muttering that I’d be unable to understand and make sense of over the noise, the constant drumming and then she’d appear at the foot of the stairs, looking up at me huddled tight on this chair, rocking ever so slightly.

The same line every time, rote and repetition “Do you want to go out and play?”

Crying “YES, YES, YES!” with the roar of a crowd inside my skull, I’d give a barely perceptible shake of my head. She’d look disappointed and vanish. More mutterings and the door would close. The child would return to its dance through the streets and I would uncurl slowly, slide from the chair and disappear into my room. Shell-shocked, exhausted and broken hearted.

This was me at the age of 6, 7, 8, 9, onwards and onwards. I wanted to play with them. I was desperate to play with them, but doing so hurt. I tried to join in the games at school and got lost amidst unspoken rules or rules that made no sense, were illogical and mindless, that changed minute by minute and everyone seemed to know how and why and me? There was I, lost in a sea of explosive noise and blurring movement, my brain, usually charging a hundred miles an hour, slowed to a crawl, with no ability to react.

The only thing that got me through was my ability to run. I was fast. Tag mad sense, Tag I could deal with. You ran and ran and ran, you chased and caught or were caught. But then the one who didn’t want to be caught, who claimed repeatedly that you missed them, vehemently and adamantly. But you didn’t, you touched them! You tried to explain but they took his side.

The unjustness. The unfairness.

Football made sense. You ran with the ball, kicked it and scored. But then the ball didn’t cross the line, or you were fouled because you were too fast to tackle but nobody else saw it.

The unjustness. The unfairness.

So… Easier to stay apart, to watch and idle, to shut out the noise and focus on the patterns in the leaves as they move in the breeze, or find a ‘quiet’ corner and lose yourself in your own head, a world of softness and warmth, where It’s safe and you can do what you want. This was Primary school. Then there was Senior School.

A huge hulking mass of a building with a thousand rooms and tight corridors where every 55 minutes two thousand pupils exploded out into them, in an eruption of screams and shouts and pushing and barging and touching.

A place where if you weren’t part of one group, or another, if you didn’t quite fit, you were ostracised, called out, cornered and picked on.

A place where people talk at a thousand miles an hour, where you’re expected to keep up and learn and understanding, except there is nobody teaching you, nobody explains, so all you can do is watch and try to copy. You get it wrong, you pay for it, you go back and watch again. This is how you learn to be normal, this is how you learn to fit in.

“Observe. Mimic. Fail. Punishment. Repeat.”

A constant, unspoken, subconscious mantra in your mind, protecting itself at all costs and forcing this transition,

This act.

This mask…

That’s what it really is, you’re becoming an actor, you slip on a mask. Your stims, your movements become conscious things, you control them. Your intrusive constant thoughts and process, you compartmentalise them and focus on what is going on. You hold your script in your mind, of what to say and do, how to respond, what is acceptable and what is not and you force yourself to do this, 24 hours a day and, eventually, you aren’t you anymore. Instead, you’re this constantly exhausted shadow, hiding in the light, you to everyone else, but inwardly screaming and crying because the lights, the noise, the sensations, the touches, the movement; it’s too much, it’s all too much and then the mask slips, a little bit of you peeps through the crack and someone sees, someone notices a physical movement, or you say something inappropriate, or you start to withdraw and isolate yourself. People see who you are and don’t like it, because its different, its alien to them.

This communication stuff is a bitch. Far easier to just say what you mean, and talk about nothing if there is nothing to talk about. Far easier to hide from a society that isn’t for us and blatantly doesn’t want us. A society which expects us to be something or someone we are not. Far easier to hide from a world that doesn’t recognise our talents, but only sees our weakness. And calls it a weakness only because it’s different to what it is used to.

What would have helped me?

Honestly, part of me wants to say to be left the hell alone. But that isn’t useful. What would have helped would have been someone sitting down with me, explaining things to me, giving me real working examples, stepping into games with me and modelling, allowing me to shadow. Explaining that other people communicate in a silent way through their bodies and that I just can’t see it, so it’s ok to say that and be honest about it and to expect understanding in return. Telling me that it’s ok to be overwhelmed, its ok to have to retreat into my shell, but also someone to tell the other kids that and the parents and society at large.

I needed someone to say, it’s ok to be me.

I read a quote the other day which went something like:

“The difference between Autism Awareness and Autism Acceptance is that: Awareness is acknowledging something’s existence and Acceptance is giving a shit about it.”

I’m sure, everyone reading this blog is one of those people. I’m sure all of you are people who don’t take on a mantle of how hard your life is because of your Autistic child, but think how hard life is FOR you Autistic child, because accepting your child’s differences put you in a position to make life easier for your child. This is when you become innovative and personalise the way you communicate with them so it meets their needs. Then this personalisation is absorbed and put back out by the child. You help them find their path by listening to them, their needs.

You don’t need to cure them or replace their behaviours, you need to accept that some things need to be done differently, then your child will give you what you need.

You’re already halfway there: You avoid the shops because they’re busy and loud. But your kid can’t go through life without ever going to the shops. So you visit them when they are shut and stand outside, so they know how they look. You walk past the shops when they are busy so your child gets used to the movement and can glance in to see the colours. You give them ear defenders or headphones to cut out the noise. You give them their favourite stim toys for comfort. You introduce them slowly. The same with everything you do with them.

All of this, what most Neurotypicals do not realise, is communication, just in a different language. You’re talking to your child without moving your lips, modelling the fact that you are looking for a way to make them comfortable and give them a little control. This is communication an Autistic child understands. It is simple and clear:

You are safe. They are safe. This is safe.

That is a fantastic base upon which to build.

From youth to adult we are given mixed messages by society. We are told that differences are something to be celebrated and then we go to war over religion. That different is good and then we are sat in identical classrooms in identical clothing, taught identical things and punished when we don’t fit inside that box. That everybody should be different because the world would be a boring place otherwise. Then we mock people who dress strangely to us, or dye their hair or stick rings through their noses.

Society doesn’t want us to be different. Society is built to progress and someone who doesn’t fit into a narrow range of what provides progress is unproductive, therefore defective, therefore wrong. Autism is unproductive, Autism inhibits progression. Autism forces society to stop and think and communicate in a different way, which slows things down. Autism is defective. Autism is wrong.

Except it isn’t.

Different isn’t wrong, different is what society fears and what society fears drives it and us forward. Different has raised us from picking at berries while hanging in a tree to a race of creatures taking their first steps into space. Different is what makes Humanity so amazing.

Communication is the driver behind that success and a difference in communication is one of the major barriers between the Autistic and Neurotypical worlds.

It’s about time that the bridge between those worlds isn’t built on forcing one to be like the other, but accepting the differences and working on how to connect the two.

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9 October 2017

Marvellous Monday - An Interview With Kate* & Little Miss E - PDA

Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults with the hope that it can help you as a family hold onto that thought that 'It can only get better'

Good Morning, thank you so much for taking the time to take part in my regular Monday Morning series, hopefully we can help everyone start the week with some positivity and an uplift. We all know how challenging and exhausting the mornings are especially if the children are suffering with back to school anxiety.

I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates.

What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible?

So can you tell me a little about yourself and you family and the connection that you have to Autism?

We have one amazing daughter who is 6yrs old. We took her for a private assessment early this year and she was diagnosed as we believed she would be, with ASD (Autistic Spectrum Disorder) with a PDA (Pathological Demand Avoidance) profile.

She shows many classic 'Aspie' Girl traits and also a very high level of demand avoidance as you'd expect with PDA.

We are lucky to have a very supportive family. I have family members who are Autistic but we didn't know anything about PDA until researching Autistic traits combined with a passion for role-play, and PDA showed up.

Its so different isn't it? I had the "Light-bulb Moment" commonly described by parents of children who fit the PDA profile.

So, tell me a little about how you manage this positively?

Our daughter has helped us look at everything through a different lens. We live differently totally on purpose and take things very slowly to make life as inclusive for her as possible.

Dealing with demand avoidance daily benefits from extreme flexibility, acceptance, and patience from everyone. When Miss E gets overwhelmed she needs time to rest and reset - a lot of time sometimes! We follow her lead as she is an only child which is a very different dynamic to managing with siblings and their needs.

We know she is always doing her best and if things are challenging for her at times we just hope we can help her stay full of confidence in who she is which is awesome, funny, self assured, tuned in to her needs, focused, interested, full of beautiful smiles and cuddles, and so much more!

It’s definitely exhausting having to remember all of these strategies and positive communication to keep anxiety and those shutdowns at bay. You sound like you really have it worked out, like you say though, its a very different dynamic when you have multiple children and one is trying to cope with having such extreme demand avoidance. But equally its still very very challenging.

We are really mindful of her triggers including sensory stimulus, demand avoidance plus social & communication challenges and support her the best we can in making her environment and life circumstances the best we know how.

I believe the best thing I can do often is take care of me and deal with the things that trigger me so I can can hold a calm space for Miss E when she needs it.

What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.

We don't really have a morning routine as we home educate and always have chosen that. Our beautiful girl wakes around the same time each day but according to her natural rhythms. She isn't often very hungry and usually wants to play a while before she's ready to eat. I'm always starving, so I prepare something the night before ready for me to grab when I get up. She chooses her own clothes and gets dressed when she wakes up out of choice. We brush her teeth anytime during the morning and sometimes in the afternoon when she feels able. We have very few demands.

That just sounds absolutely perfect for a child diagnosed with PDA, I really think Lola would benefit from much the same. She is so much more relaxed at the weekend when she wakes up.

So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Little Miss E and as shes one of our anonymous interviewees - Here is her mascot!

Little Miss E is clearly really benefiting from your awesome parenting techniques, tell us those bits about E that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?

I love seeing how much her self awareness grows each year.

What do you find most Joyful about E?

Hearing her sing and seeing her dance makes me grin from ear to ear every time.
She puts her arm around my shoulders and cuddles me.
she chats away with such ease and confidence to people in shops and other venues.

What an amazing little family that you have, I feel so honored that you are sharing all of this with my readers and I.

Its really important for carers of autistic children to take some time to re charge batteries, and look after themselves, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?

I'm a holistic practitioner so I use relaxation tools like EFT, Reiki, and meditation for myself everyday & I love a good soak in a bath with Epsom Salts!

I get so much from connecting with other parents walking a similar path through the amazing Facebook groups run with so much love out there. We feel so lucky to be raising our daughter at a time where there is so much information and support for parents on PDA and such an astounding PDA online community building all the time.

Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so does E have any successful techniques or aids that they use that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction.

Because Miss E is at home she chooses what she wants to do when. She has a favourite sofa and a blanket she loves to get cosy in for a rest.
She loves using the iPad when she wants to just chill out. If we are out and about she will use ear defenders and her buggy to escape the sensory overwhelm.

I find that its so important to share these ideas with other parents because although most of us are aware of them, some of them can be forgotten, and just that little reminder can change a period of negativity to one of positive outcomes for both parent and child, so thanks so much for sharing you wealth of knowledge with us, I am sure that many parents are going to really benefit from it.

Finally we all want to know about the biggest milestone that you or E has accomplished in recent months.

We just love see her growing in self awareness all the time!

And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.

Thank you to Kate* for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important week off in high spirits.

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