‘Just Do It’. I just Can’t. The truth about Pathological Demand Avoidance Syndrome.

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Photo from google images. 

Today I would like to see if I can put into words, just how difficult it is to ‘Just do it’ when your brain is wired as Pathological Demand Avoidance Syndrome. 

If you are well read or educated on what PDA means, you will have learned that people with PDA avoid or refuse every day demands and are obsessive in their drive to control their environments and those around them in order to relinquish some of the painful anxiety that plagues them all day, every day as a result of not being able to ‘Just do it’.

I think that the inability of being able to ‘just do it’ is the most misunderstood trait of PDA. I think anyone non PDA can take for granted the ability to ‘just do something’ and therefore cannot fully comprehend or appreciate just how hard it is to pick up the phone, or walk the dog. To be spontaneous or happy at a birthday party. To start a project or finish reading a book. All of these things are just ordinary parts of life. But for someone with PDA, there are barriers, doing things are paralyzing and encompassed in fear. The demands of every day life are out of proportion with what the person with PDA can naturally accomplish on many (but not all) occasions.

Imagine yourself not being able to wake up, to be motivated to agree to join the day. You just can’t. 

Imagine yourself not being able to decide what to eat for breakfast. You just can’t. 

Imagine having a wonderful idea, an original idea, but you can’t get it out of your head or share it with anyone else.

Imagine wanting  to eat your favorite meal, that the plate is right in front of you, but something in your mind says no and paralyzes you to be able to eat it. You just can’t.

Imagine wanting desperately to join a class, a subject that you really like, but the people in the class are major triggers for you, and so you turn away. You just can’t.

Imagine having a talent in the arts, that you desperately want to share with others. But anxiety is so overriding that you just can’t. 

Imagine seeing the housework piling up around you. You know it needs to be done. You want it to be done. But you just can’t. 

Imagine that someone else is asking something of you and it feels as though you are being forced against your will into a dangerous situation. 

Imagine that you have had so many traumatizing memories from past attempts to do things and so many really bad days, that your brain automatically shuts down to protect you from what feels like a real threat. 

Imagine that the thought of a task is so frightening and overwhelming and yet logically you know its stupid to think this way, yet you cant help it. 

Imagine that all you find yourself doing is putting it off, and putting it off, and putting it off. 

Imagine if you also had repetitive and obsessive thoughts that wont go away, but you are too embarrassed to tell anyone and too scared to deal with them or seek help, how alone and exhausted and depressed would you feel? 

Can you imagine these things? I could give examples of many, many more ‘things’ that makes up what we call life, in fact most ‘things’ that we take for granted are potentially, really, really difficult and sometimes impossible for a PDA person to do. It’s so hard to imagine isn’t it. It feels so unbelievable. If you have seen this person doing some of these things before, you could be tricked into thinking that they can do them and If they can do these things some of the time, why can’t they do them all of the time? It’s not hard to see why those who do not live with PDA, do not believe PDA. I mean, even those of us that do live with someone who is PDA question our sanity and whether PDA is really real.. Who wouldn’t?

But I do live with PDA, I have done all my life, and I can tell you hand on heart, it doesn’t matter to me whether the big wigs have proof or not, whether they have followed this study and that, whether its ‘ recognized’ or not. Not being able to just do things is a real condition and can be the crux of major depression for the person with PDA, who are generally very bright and charming people. It is exhausting being in the mind of PDA and it is exhausting being a witness or carer to PDA, especially when so many people from family to professionals do not see or believe what goes on behind the scenes.

Many of us share similar stories of having to hear our children tell us they wish they had a different brain, or that someone would give them sympathy. They wish they could die or ‘just do’ the normal things that other kids could do. No parent should have to hear their children say these things, but they do. On a daily basis. And as parents, all we wish for is to be seen and heard. To be recognized for the difficulties we have or the tireless work we put in to making each day as good as we can.

Please watch your child with PDA. They do not deliberately tell you they cant do something. Remember that the next time you expect them to “just wake up” or just do it’ Sometimes, ‘They just can’t.’

I still make mistakes with my girl. I default back to old programmed ways all the time and I try really, really hard! I know how difficult it is to find true patience, when your cup is completely empty and you feel like nothing you do is making a difference. But every time I default and see the result in my child’s behavior, I try and rectify my attitude and my reactions and every time I do, she transforms again for the better. I am in no doubt what so ever, that it is us that need to change, not the PDA child.

We can help the child to overcome some of the things they are stuck with. We can use the PDA strategies to avoid extra upsets and overloads. We can learn to accept our children as they are, where they are on their individual journeys. We can search for better ways to be. We can understand the deep reasons why the person with PDA is saying no and we can help them to say yes. We can surround them with the things that light them up and follow the sparks of joy as they unfold. We can find gratitude in all of the tiny things that make up the big picture and we can focus our energy on what we want more of, not what we lack in. We can see the growth as we become the people that the world needs to see, the change makers. We can see things differently in order to find a way out of old fashioned values that are not serving people any more. We can teach through love and we can stand up to those who do not share our values. We can listen to our intuition and learn to trust it. We can find depth and reason in our own childhood memories to better understand why some things upset us more than others. And we can change those beliefs. It starts with us, the parents of PDA. And we can ‘Just do it’. We can.

Please have a good read through my blog to find ways that help people with PDA overcome some of the intricate and invisible difficulties they have on an hour to hour basis, and help us to raise awareness by sharing this post from the main page and by clicking follow if you like my stuff. I get amazing read stats on here, thousands, but could do with more followers to give some weight. You can join as an email follower if you do not have a blog.

Thanks for reading. x LOVEPDA xxx

 

 

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28 thoughts on “‘Just Do It’. I just Can’t. The truth about Pathological Demand Avoidance Syndrome.

    1. Exactly my thoughts too..It’s so well written and is a mirror image to her difficulties..I will be using some of these great statements to the people trying to force my child back to mainstream school with no adequate plan/strategy..!

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  1. thanks for sharing this Mel, it’s such s difficult one to deal with as a parent, and as a person with PDA it must be so frustrating, ever likely our daughter’s self esteem is at rock bottom 😢

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    1. Hi Jo. Self esteem can be so fragile. My lass just said to me, Mum, the reason I don’t wake up is because its the only time my mind is ever relaxed. xx Keep on keeping on. x

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  2. My youngest (I have 7 kids) has PDA & I hate it. For me its bad enough living with it & I cannot imagine what it must be like having it. Every single day is filled with hard slog! People say o you must have good days lol I settle for good moments, mostly when I’m asleep but heh, I get them!!

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    1. Aww, I’m sorry to read your difficulties, having 7 beautiful babies to look after, wow, I cant imagine! Good moments are gold moments and they grow when you put them all together. x Thanks for reading my blog, I hope you find some helpful ideas here. x

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    1. Hi Joanne, welcome to PDA. It can be very overwhelming when we begin learning about PDA, but its amazing how much you learn in a short space of time. We are learning new things every day and our community is becoming a big family now. x

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  3. Hi,
    They don’t diagnose PDA where I live (we have an autism diagnosis) but this is my girl, I literally cannot get her to do anything!! I try to be patient but it’s exhausting 😢

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    1. They key is to stop trying to get them to do things, but to create an environment where they want to do things, where they feel safe and loved and can follow passions. And if they still can’t or don’t want to, then that’s OK, it’s as it’s meant to be and when we let go of our expectations, that’s when things change. We are here to learn from them too. xx Best of luck and love to you. xx

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  4. My daughter has PDA & today I ran out of energy to smile and fix her day and she had a meltdown as a result. Thank you for your words which reminded me how I needed to fix my thoughts because she can’t fix her. My beautiful kind and caring daughter deserves a life filled with understanding. I read everything I can to help her and your words ring so true. Thank you

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    1. Some days are just rubbish, but that’s Ok. As my good friend Lindsay at Peace with PDA told me the other day, when we feel like we are cracking up, that’s when the light comes in. Love to you. xx

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  5. Hi, great reminder as my son with PDA aged 7 on his summer holidays, was doing great up until a week ago. His aggression towards his siblings has increased it is driving me demented that he is controlling they games, he is hurting them literally as soon as I have my back turned. It has became soo stressful, I have said things I can’t take back, I don’t think he was listening anyway, he zones out if I give out. But I feel I am losing my grip on things as behaviours are like ever hr there is something. And my super super patience is dwindled now to nothing… I understand not getting him to do stuff. But it’s like he purposely hurts his 2 and 3yr sister and brother for fun. Sorry for the rant, fed up Mum.

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    1. HI Marilyn, rant away. Its good for others to see that life can be really hard, are there any people in your life that can help support you or form any one on one relationships with your kids? Often children just want undivided attention, and though thats not always possible, it is possible sometimes and 10 mins of totaly undided attention, like reading a book with them with no distractions, or just listening and ensuring they feel heard and loved, is enough to bank up some good behavior afterwards. Equally as important is taking care of yourself and having some soul feeding treats, even if you cannot actually get away, headphones with a youtube mediation or talk, some nice music, a glass of wine. Rough play or hurting siblings can look like a deliberate things, but there will be a reason behind it, its usually their anxiety or a need that’s not being met. You could also scroll down to my blog entitled Siblings for some more ideas. Take care now. xx

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  6. It’s so hard to see it in ourselves, but yes, I feel the same as you. Getting to know ones self is all part of the journey. Thanks for sharing. Looking forward to your next post (no pressure lol) xx

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  7. Thank you so much – this is my 19 year old son. His psychiatrist left out the PDA questions as felt the label would not help him as an adult, but he is absolutely crippled with obsessions and anxiety- how can I help him?

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    1. HI Emma, thanks for writing. I have an issue when people say that correct diagnosis is a label. Ask an autistic person if they have improved their lives by knowing that they are autistic and they say yes. Many people have lived really difficult lives feeling different and trying to fit in, or being treated as neuro typical and punished for their behaviors . Some end up seriously depressed, in prison or incorrectly medicated, all because the people that were meant to look after them, couldn’t see why they were different. This is why I spend all of my time trying to best explain the inner workings of PDA. In years to come, we will know that PDA is simply a way of mind, like being gay. But as we are now, we are still so very far behind. Please ready through my blog and learn as much as you can. Be there for your son and don’t be sacred that you feel alone, you are not alone, there are so many thousands of us all and we are all in the same boat so to speak. You cant change you son, but you can help by standing by his side, as I know you are. I know you are an amazing Mum, only amazing Mums have the amazing job of parenting a child with PDA.. x Keep going and trust it is all as its meant to be. Love to you. xx

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  8. Wow, thank you for your blog. This so sounds like my 15 year old daughter who has been diagnosed with anxiety (mainly school related). She tells me that she has so many thoughts that scare her and it exhausts her to deal with them. That she wants to go to school or even just get up, but she can’t… but then if we have an appointment booked or going to a concert then she usually can! (Although not always 🙁) Any idea how she could get a diagnosis (still waiting for CAMHS, been a whole school year waiting for them and daughter is missing out both on education and friendships) thank you again x

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    1. Hi Sharon, thank you for your message. I’m pleased you can relate and send my love to you and your daughter. Mine is also 15. If you go to my main page and then to the about section here on the blog, you can find links that will be helpful to you. I am lucky to live in New Zealand and have obtained a PDA diagnosis for my lass privately. I had never heard of PDA, so, once over the shock and well learned via the internet, I decided to write as much as I could about it to raise awareness. It’s still very hard to get diagnosis or understanding after diagnosis. So my advice is to use PDA parenting and you will see a lot of improvements in your daughters day to day life. School does not work for a lot of PDA kids. Total freedom, unschooling or homeschooling seems to work best. You might also like to read through my blog role, which highlights the best bloggers in PDA for lots of advice on schooling and strategies and personal insight. My best advice is to find your own strength and trust your instincts. Find the things that work rather than worry about the things that don’t. xx Best wishes.

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  9. My mom sent me a link to this page; I hadn’t heard of PDA before but it’s unreal how much I relate to this. It’s kind of a relief that it’s not just me. I haven’t been diagnosed with PDA, but I have been diagnosed with adhd and executive dysfunction disorder. I was diagnosed when I was six, but I’m 28 now. I think this is something I should look into. Thank you for raising awareness!!!

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    1. Hello Mollie, I’m so pleased you have found us. If you look at the about section here on my blog, it will take you to some useful links. There is an adult pda support group which you will find by looking through the pdaresource website. It is run by Graeme who looks after us all. Thanks you for your message. I wish you lots of love on your journey. x

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  10. Hi, this is my daughter in a nutshell. I accept that that’s how it is, but why? She’ll say she does understand something, but to me there’s nothing to understand it just is, atm she needs to glue some patterned papers in her art book but can’t because she doesn’t understand it 🤔 what is there to understand? just glue them in. Sorry for being frustrated but I can’t help her if I don’t get it. Gcse’s are 2019 and I really can’t see her passing them atm because she just won’t do the work.

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    1. Hi Penni. We are still trying to work out why. But as the info stands today, PDA and the cognitive difficulties in completing tasks generate the flight or flight system in the brain. The brain can then get stuck in freeze mode or fight mode and that’s when we see emotions such as anger or we see shut down/ refusal or inability to do something, even if it is something nice. People with PDA develop a lot of strategies over time to protect themselves from feeling the anxiety and this includes elaborate reasons not to, appearing to be manipulative in getting out of doing things. They might just refuse and appear rude or lazy. But they really cannot help being this way. It is a neurological difference. Wires that are different from what a regular person would find easy or just do without thinking.

      Some days are easier than others and they can also go through good spells of being able to get things done. Sometimes they can over ride the barriers if they are too scared to look silly in front of other people. This is called masking and is very exhausting for the person with PDA. It is also why children can look like they are coping at school but at home where they a free to be themselves, they loose the plot.

      Pushing someone with PDA to fit in with rules and society, or parents wishes can cause over load and meltdowns. Some might not meltdown a lot, but then have a sudden breakdown because of years of hiding who they are or built up pressure to conform.

      As people who love someone with PDA, the best thing we can do is allow them their freedom and understand their triggers and difficulties. Even if it seems like they are making it up, trust me, they are not.

      I hope this helps you understand a bit more. Perhaps I might write a piece about the why. But all in all, there is still a lot to understand and when PDA is not believed, we are a long way off from clinical studies. And even then, good luck finding someone with PDA who is willing to be in a study! lol.

      Lastly, try not to worry about exams. They are not the be all and end of of life as we are trained to believe. As long as your girl is loved and happy, she will thrive when she is ready. x

      Best wishes.

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