For us, despite home educating, half term is a bit different. Edward’s Dad is a teacher so we’ve had a week at home together. We don’t often take holidays during school holidays, mostly due to the busyness but occasionally we do day trips to quieter places – not proper ‘attractions’. This week though, the furthest we have travelled was going for a very enjoyable walk to the local field. This is not unusual, and actually more than we often do.
It has been lovely to all be in the same house, spending time at a slow pace, without the anxiety of Edward’s Dad going out each day. Much of the week has been spent in the garden, where we can go in and out avoiding the heat of the day, and, when things get too much, the television isn’t too far away. Minecraft and Octonauts have been helpful this week. The things Edward chooses are often a sign of how he is feeling. Octonauts has been popular for as long as I can remember and is what he chooses when he wants familiar comfort. He is much less keen to try new things at these times and will enjoy programmes and toys we haven’t seen in a while.
With both parents at home, we take it in turns playing or supervising as Edward is not keen on two other people in a room at once. Supervising involves sitting in the same room as Edward while he is watching the television in order to rewind sections of episodes when required, or to answer questions, or get food for him. This must not be confused with providing unrequested input! This means that it is possible for the other one of us at a time to have some time to do things we haven’t had a chance to do in term time. For Edward’s Dad, this has meant doing lots of productive things – we can now get into our garage (dumping ground) and he has shifted half a garden full of rubble which has been on our to do list forever.
For me, on the other hand, I have felt very stuck. In times like this, I normally rely on the motivation and help from someone else. It is now the last day of half term and the one job I had in mind to do over the holidays is still not done. I have been paralysed, losing sleep over it and feeling ill whenever I walk past the room that needs sorting. This isn’t just procrastinating, it fills me with fear and I just can’t enter the room. Anyone who knows me, knows that I am obsessively tidy. I tidy ‘unnecessarily’. I tidy up things people are still using. It is never because it needs doing, it is because I can keep order in this way. I don’t know why I’d decided this room needed doing by the end of the week. To give myself a deadline was the worst thing I could have done. Because of this I have been less able to function for the whole week.
These illustrations from Sally Cat are brilliant.
It has been a very quiet, uneventful week generally but the lack of pressure to push anyone to do anything beyond their comfort zone has meant that we are ending the week feeling less stressed. This is because rather than exhausting ourselves and any energy reserves we had, we have continued our normal low demand lifestyle.
It is interesting to me to see the similarities between Edward and I and how we manage with changes in routine and being in a ‘stuck’ state. I do hope that it allows me to empathise with him and not put demands on him when I can see he is finding things a little harder.
I am absolutely blown away by the response to the idea of raising awareness of PDA through hiding pandas. Many have been reported found, some re-hidden and many have found new homes. Not only have a large number of people visited the blog in order to let me know which panda they found, most have clicked through to other pages with more information on.
It has really touched me that so many friends, family and friends of friends have got involved. I am so very grateful that you are so willing to help. I can’t thank you enough.
Here is a selection of the pandas that have been travelling around the country.
So far, the furthest I think one has travelled is between Manchester and London. One has also gone from Market Rasen and was last seen heading to Birmingham and one has been hidden in Scotland.
Instead of waiting until PDA Day next year to do this all again, I am going to start building up a stock of handmade pandas to hide throughout the year. I’ve also created a label that you should be able to print and attach to pandas. So, if you are able, why not make a panda or two, print this Panda Label – laminated if possible and hide them somewhere. If you would like me to print and laminate some and post them to you, just let me know. Alternatively pop into a charity shop and see if they have any pandas you could purchase to use.
People have already started to make their own pandas. This one is made of felt.
If you’d like to get involved in other ways, by donating £5 you can name a panda that someone else makes and hides. Follow the instructions on my gofundme page and I’ll send you a photo of your named hidden panda and keep you updated with its travels.
I have written a very simple crochet pattern for this panda which I’ll include at the bottom of this post, although any kind of panda is great!
Last week, I bought Can You See Me? by Libby Scott and Rebecca Westcott. I had seen it spoken about on social media and thought it sounded brilliant.
To find a fiction book with an authentic autistic voice, especially that of a female is hard. As I was reading through, I felt that making some notes of particularly pertinent bits may be helpful.
I’m not going to talk hugely about the plot, or even much about the characters. Instead, I have focused on specific passages and how they related to me, to our family and how I feel they are truly reflective of my experience. I am in no way suggesting they reflect the experience of every autistic person, but they certainly rang true for me.
Many of the parts I have selected to highlight are about how being different affects people, and this is something I have really struggled with – but now, finally, am starting to embrace.
‘Maybe life is simple if you’re the same as everyone else’ (p133)
‘If she keeps running then she is exactly like they are, and people like it when you behave like they do’ (p143)
When Tally (the main character) is explaining the rules to the dog, Rupert, she says
‘ 1. Don’t do anything unexpected 2.Pretend to be someone else. Someone who isn’t different’ (p265-266)
‘That’s why people think being autistic is a bad thing. Because it stops me from being the same as everyone else. It stops me fitting in’ (p292-293)
This all relates to just how hard it is to fit in, and how she loses her individuality by trying to blend in. In my previous post, I talked about how I copied various bits of other people’s personalities in order to blend in. At the time, this felt like the only coping mechanism available to me, survival was the only thing that was important.
As Tally nears the end of her story she realises that trying to be the same as everyone else isn’t the right thing for her. As I have got older, this is also true for me.
‘When I don’t act like myself, I feel like I’ve lost who I really am’ (p305)
‘The only bad thing is that you’ve wasted so much time trying to be someone different, when the someone different that you already are is so amazing’ (p293)
Friendship is a theme that is used throughout in the story, and Tally’s ‘friendships’ come and go, and sort of come back again. Even through the times where she has friends, she doesn’t feel completely comfortable. Tally’s comments on friendship are truly insightful.
‘Always on the outside looking in’ (p277)
‘There is nothing more normal than hanging out with your friends on a Saturday night, even if it makes her feel like she’s been torn to pieces’ (p177)
‘It’s hard to know which is worse. Being alone or tagging along behind them, being ignored all the time’ (p245)
‘She always makes sure she only says what everyone else is saying but nobody calls them weird’ (p139)
This is something I have always found difficult. There are many situations I have been in like this that all firmly remain into my memory. I find the effort of making and keeping friends hard. I am not sociable and I struggle to converse fluently. I replay every interaction over and over finding flaws and focusing on all the irrelevant things I have said. These then play on my anxieties. The mental and physical exhaustion of this, makes interactions with others a huge challenge.
In one of her diary entries Tally talks about being in a bad mood, causing her to ‘get stuck’.
‘When I’m stuck…I’m almost trapped in a body that isn’t my own, and that feels uncomfortable’ (p229)
‘Upset doesn’t make your ears fill with a rushing, pounding noise that is impossible to ignore. Upset doesn’t make a person want to curl up in a ball and close her eyes and disappear’ (p290)
When I feel ‘stuck’ my head feels full and empty at the same time. Ordering my thoughts is as if I can’t find the end of a ball of wool, I can’t find a place to start. I need either loud music or total silence to ‘reset’ myself. It is a really hard sensation to explain but, as with Tally, feeling trapped is certainly a part of it.
To end, I would love for this to be read by everyone. It would help parents, siblings, teachers and professionals. My hope is for every child, autistic or not, to have a teacher as understanding as Mrs Jarman. During the book there are diary entries from the main character (written by Libby Scott). I feel a fitting conclusion would be directly from her. Her, and my aim is
‘To help people like me become proud and open about being autistic and to stop people treating us differently’ (p348)
If you have read any of my previous posts you will probably know I am Mum to Edward. You may also know that he is aged five and he has Pathological Demand Avoidance.
You probably won’t know that I also have a demand avoidant profile of autism. You probably won’t know this because I have been afraid of sharing, afraid of again being told ‘don’t be silly, girls can’t be autistic’ and afraid of being treated differently. More recently I have realised that by understanding myself more deeply, I’ll be much more able to help Edward. It is for this reason I am going to give you a bit of my story. I am going to do this in order to try and explain why knowledge of PDA is so important, and how correct identification and support can make enormous differences to lives. It is not a sob story, I use these very personal examples to highlight how both personal and external understanding could have made such a difference. Things need to change.
From first starting school I was bullied for being different. Even in primary school (I don’t know exactly when, but I would have been younger than 8) I have memories of sitting in a classroom telling myself to stop saying irrelevant things, to control my actions and to copy what others were doing. As time went on I consciously picked up bits of other people’s personalities that conformed so I could blend into the background. I could feel myself already doing something that I now know as masking. I was a quiet, conscientious pupil, never causing the teachers problems and doing what I needed to in order to keep under the radar. Throughout my school years I attended sporadically, had few and changeable ‘friends’ and although I did do some GCSEs, I had pretty much left altogether by 14.
I remember having to be strongly encouraged to go out anywhere especially to my regular hobbies, being told ‘You’ll enjoy it when I get there’. Getting over that anxiety to even do things I loved was often impossible.
From my very early teens I was visiting the doctor regularly with a variety of mental health problems. I tried a huge number of medications, I went from counsellor to psychologist to psychiatrist, one of whom stated ‘it’s your own fault you don’t make friends’. To my credit, I think, I didn’t go back. I clearly remember at one of these appointments I was quite adamantly told ‘you don’t have autism, you’re female’ and, despite this wholly unhelpful exchange, with help from Mum and a range of other sources, I realised that probably this professional was wrong, and we felt that Asperger’s Syndrome fit pretty well. At this point (late 1990s) Pathological Demand Avoidance was a very newly talked about neurotype. This discovery gave some comfort that my difference and struggle to fit in throughout my life was due my wiring, not a preventable failure on my part.
I had moved out of home at 16, finding sofas to sleep on and after a brief stay back at home, had left completely at 17. Shortly afterwards I ended up meeting my now husband and finding a job I loved. I worked in a fairly large number of jobs over the next 4 years, on and off. All of these were with children, some were in schools and eventually I found myself working with those with additional needs including autism. I still felt I never quite fitted, really struggling with the structure, and I now know the demands, of a job. The novelty of regularly changing jobs kept me in employment – just about – for this short period.
A few years later though, after another ‘breakdown’, I decided to pursue a diagnosis. This again was a traumatic experience, being passed from one professional to another and, while my GP was incredible, beyond that I was frustrated by not being listened to, and by being unable to express myself well enough in order to get my point across. I gave up trying to navigate my way through this complex system, and found myself stranded somewhere between knowing deep down I was autistic, and thinking the professionals must be right, and that I was just incompetent at life.
Shortly after this, Edward arrived. This postexplains how we came across PDA. It is frequently observed how similar Edward and I are, but I’d never really considered there may be something more to it. Nearly a year after first discovering PDA, and just after Edward’s diagnosis I read Sally Cat’s book PDA by PDAers. If I didn’t have the words to explain Edward’s ‘lightbulb moment’ then I certainly don’t have the words now. It made sense of all the events of my life so far. All the masking, anxiety, anger and feeling so very different now became clear. The previous 30ish years have felt like I have been swimming upstream. The reason I started this blog was in the hope I can improve life for Edward and others like him. Never did I think that learning more about PDA would shine such a light on my life. If I’d known when I was smaller what I know now my life would have been so different. This discovery has dramatically improved my life. Effective identification allows for effective support.
The lack of understanding in my life previously has affected me deeply but that is where the passion comes from to make everyone aware of both the fact that females can have autism and of Pathological Demand Avoidance specifically. It needs to change for us, for our children and for all future generations. Only then will we be better understood, by ourselves and by others.
PDA Day this year is on 15th May. Read a little more about it on the PDA Society website here.
If you have found a hidden panda, welcome! Please click here.
In order to spread a little more awareness and information about PDA, we will be hiding wooden pandas in public places with a little information card from the PDA Society attached as well as a link to this blog post. They will be left in various places around the country between 12th-19th May.
If anyone wants to join us, we are using the lanka kade wooden pandas but this is totally optional – any panda is fine! I got the awareness cards fromhere but if you are unable to get these, just attach a link to the PDA society website and a link to this blog post, or print out a little bit of information and, if you like, let me know where you have left them so we can collate any that have been found.
Alternatively, if anyone wants to name a panda that I am hiding, you can donate £5 to the PDA Society here, let me know you have done so and what name you would like for your panda. I will then attach the name and let you know where yours has been hidden.
It is also worth keeping a look out on some of the blogs featured on my resources page over the next few weeks, I am sure there will be some really insightful posts.
The PDA society’s keys to care document is one I often share to give a brief overview of PDA and explain a little how people could help Edward. I thought I’d take some time to share a few specific things we have done to ensure he thrives.
See the person, explore their interests and engage positively
Edward is almost 5, and I think there have been 3 key interests he has had. Firstly Cars (the Disney films) then Robot Wars and now it is Pokémon. These interests become all consuming. He pretends his bath ducks are Pokémon, we talk about which Pokémon might be experts at teeth cleaning. When we are out for a walk we battle as Pokémon before we are able to continue up the road. We are able to talk about things by using role play, which means Edward is a little more open to doing things he may otherwise not.
Our home educating life is completely unstructured but all sorts of learning happens within his area of interest. Categorising Pokémon, talking about their strengths and weaknesses and Pokémon maths (this book is brilliant) have all featured.
Recently we have created the most streamlined Lego car to transport his Pokémon toys. By being a little bit creative but embracing his interest, Edward becomes much more open to engaging with new experiences. It also helps when attempting to visit new places to talk about the best Pokémon to take with us (water Pokémon to go swimming, for example).
Approach PDA as you might caring for a panda – create the environment which enables individuals to thrive
This is something that we have tried really hard to implement in our lives. In this instance I’m going to talk about Edward’s immediate home environment. If you were to visit our house, you may find it slightly unconventional. We have made it a safe and comfortable place for him where he has fewer every day demands. We don’t have large furniture (no sofa or dining table) as we found ourselves constantly reminding him not to hurtle into them/jump off them. The solution for him, at the moment, was to remove them. We have just this week purchased an enormous beanbag for sitting to, and jumping on and off. We eat on a large picnic mat on the floor. We had considered making our spare bedroom into his sensory room putting his swing, monkey bar, wobbel board etc. in there. Instead I felt strongly that his sensory needs couldn’t be segregated in this way and these items are movable throughout the house wherever he needs them. As I’ve mentioned in a previous post, he also has his little hideaway cupboard where he loves to go. Yes, unconventional but so much better for all of us, allowing Edward the freedom to relax in the one place totally designed for him.
Indirect ways of wording requests, or even silence, helps with completing tasks
Reverse psychology used to be really effective, although a little less so now, and Edward does still become suddenly more inclined to do things on the rare occasion I’ve just made a hot drink! When being given direct instructions, his answer is always going to be no, regardless of however appealing the request may be. His response is a result of panic and anxiety. I therefore find myself providing a little information, for example ‘it is sunny, the shop/park close at whatever time’ and then just leave it with him. Time pressures do not work, and are totally counterproductive. Asking Edward to rush, results in a panic response, causing him to freeze. If time is a consideration, I find other ways to help things happen. Follow the leader and Simon Says (but with a Pokémon name) can be effective although not reliably so.
Sanctions and consequences (including rewards) do not work and make things worse
It is important for me to remember that when Edward doesn’t do something, it isn’t because he is being obstinate or defiant, it is because his anxiety will not allow him to. Therefore if I then removed something as a sanction he would be helpless and confused. Rewards are also not an incentive to encourage Edward to do anything. If he is able to, he will. A reward would not change this ability.
He doesn’t like direct praise, but I’m always sure to share things he has done when he is in earshot. These don’t have to be major things, I ensure I let him know that the little things (which aren’t little to him) are great achievements too.
Enable some control and choice, allow for negotiation
This is something we find ourselves doing constantly. Edward currently throws soft toy owls into a laundry basket before he goes to bed, the number of times has increased steadily over the past few weeks. He gets a choice of 5 or 10 times and always chooses 50. This is his way of putting some control over his bedtime routine (which deserves a whole other blog post itself!) and he is in control, meaning a smooth run up to bedtime. If we insisted on a lower number, there would be distress, meltdown and a lot of anxiety. This strategy works for us, and as long as we give Edward enough room to manoeuvre with his choices, he keeps that freedom he needs.
Processing can take longer than expected take and allow time
This is really fundamental. As I referred to earlier, time pressure leads to panic. Before offering Edward information, or asking questions or instigating a conversation, I always says ‘let me know when you’re ready for me to talk’ he can then finish his thought process/game/TV programme without worry that it will be interrupted. I tend to speak in short bursts so he isn’t overwhelmed with chat and the bits he needs to know come first. Often I say things like ‘pasta or rice cakes’ without any more than that, then leave him to decide without further input. Some days we have longer, more detailed interactions, but I have learnt to distinguish those times he needs less from me.
Fairness and trust are central, if things change, be clear and honest about why
After a period of finding our way, Edward can now be sure that we won’t do anything or go anywhere against his will. He has the freedom to choose when his hair is brushed, when he goes in the car, when he gets dressed. We live in a way where this is totally possible and deliberately make very few arrangements that are time sensitive. This has lead to a trusting relationship where he knows he can trust I will do the best for him. If something unexpected does occur, I will explain to him honestly why it has changed. Frequently the instigator of changes in plans is Edward himself.
Collaboration, flexibility, variety and humour all work well
Humour plays a big part in helping Edward feel safe. We play on the fact that different people are a bit silly sometimes if they make a mistake and he loves to do ‘Wacky Wednesday’ (Dr Seuss is a genius!) We use this as a way to tidy up, and then put a few items back in a strange place for his Dad to find when he gets home. We vary our strategies as novelty wears off. This is a bit trial and error, and I try to ensure I change things before they get monotonous for him. This is a skill I’ve not yet perfected! Edward loves novelty but things definitely move fast and I have to find new ways of doing things on the spot. I frequently find myself saying ‘ah I’ve got a really good idea of what we can do’ while my brain is rapidly thinking of something fun and safe to provide a distraction before Edward gets bored and distressed.
If you share one thing about PDA today, the Keys to Care document by the PDA society is a fabulous one.