An A-Z of PDA (Pathological Demand Avoidance Syndrome) — Part of the Autistic Spectrum.

This is an entry I’ve been planning for a while because even those closest to me are getting the wrong end of the stick. I can’t make others understand my disability traits. I certainly can’t stop others making assumptions. However, I can explain how everything in this entry and let others make their own minds up. I’m not saying that they will definitely get what I’m trying to make others see, but at least I’ve tried. I’m an adult with suspected PDA but diagnosed as Asperger Syndrome (which I dispute because my intelligence isn’t great due to learning disabilities). It says suspected PDA on my notes, just in the process of getting it confirmed. I’m going to attempt to explain the condition. The assumptions that others have made are hurtful to me because they do not live my reality. Therefore they really don’t know what goes on in my head to make those assumptions about my intentions and feelings.  

I’m going to start by going through the list of symptoms and explaining how they apply to who I am and my life in general. Resists the ordinary demands of life- I do this because things others can do and take for granted aren’t things that come easy to me. I unconsciously learnt to distract those making the demands with sending them written messages (email etc). I didn’t know that this was the case until I really sat down and thought about it. I do try to excuse myself from demands which I find extremely difficult. I do try to negotiate and procrastinate when it comes to sorting myself out because I used to find it quite hard to conform to certain expectations. I don’t do it quite so much now because I do more avoiding situations where I’m going to be expected to do things that I find extremely hard. I did used to say I was physically ill in order to not have to go to school. I remember sitting right next to the fire to give myself a nose bleed so I had an excuse not to do something. I would withdraw into fantasy permanently if there was that option. Also, due to severe anxiety, things build up and eventually I just have reached my limit and am awful towards others which is how I got labelled as a criminal. It happens mainly when I’m trying to make it clear that I cannot do things the way others do as easily as others are expecting and they are practically ignoring me (happened with higher ups at university). Others do not have a clue that every time they ‘don’t hear me’ my anxiety levels reach the roof and if anything happens then I will just lash out at the nearest person. It has never been physical but I’m the type of person who writes literally everything down and sends them if my anxiety levels have reached extremely high levels. That can only be avoided if other people listen and not only hear me, but also look at how they can make their rules flexible enough at least to meet me half way. I have parents of PDA on my social network list and their children’s schools’ just simply can’t understand their children. Like myself, many of them either have been permanently excluded, on a very limited timetable or are made to do their schoolwork at home. Those children don’t have much hope in achieving the required grades when they eventually reach school leaving age. There have actually been groups of parents that have actually taken their PDA children out of school to home school them because they are afraid that leaving them in school will fail their children in education and other areas relating to development and them being understood. I agree that home study is good for PDA individuals because it takes a vast amount of demand socially and structurally away and leaves the focus squarely on passing the qualifications needed. I honestly don’t feel that it should always be this way though because it can be isolating and difficult to concentrate in the home environment due to distractions. 

They’re saying that autism is being more understood and accomodated within society. Yes that may be true in many cases, however, those of us on the part of the spectrum which is PDA haven’t even got our disability recognised, let alone at a point where others understand it enough to make adjustments in the areas which we find extremely hard. Then there is the lack of understanding of the sky high levels of anxiety that we feel which causes us to take so much and then majorly meltdown at others. I’m not getting at anyone here but just stating a fact that needs pointing out within what I’m saying as a whole. The involvement of disciplinary procedures and police / court make our disability a whole lot worse. I literally felt like my head was going to explode when I went through all that process and it made me ill being constantly anxious. The criminal justice system, whether it’s orders, prison, mental hospitals etc aren’t going to help those of us with PDA and it isn’t going to solve the reoffending rates among these individuals either.  If anything, it is just going to make it worse and give us extra issues eg. Mental health problems  like depression. Those sanctions are actually adding to the issues because it’s causing an even worse demand which the person finds hard to deal with anyway. I’m not trying to get out of things I’ve done when I’ve got into meltdown mode. This is an A-Z, therefore every single detail has to be covered. There are certain aspects of PDA may appear manipulative to those without the condition or not on that part of the spectrum, but I assure you this isn’t the intention. It’s hard to get neurotypicals or infact even anyone on the other parts of the Autistic Spectrum to understand that what their asking is against our make up regardless whether it looks simple to them.

I’m going to go onto the worse parts of PDA which can destroy any relationship or friendship. I have personally got a lot of stick and assumptions due to this part of the PDA. Appearing sociable but lack understanding- This is a huge problem for me because on one side there is someone who absolutely thrives being around others. But, then there is the other side of me that may like socialising but I lack understanding. Others may assume that I should understand that due to the fact that I’m an adult. In terms of understanding I still feel like I’m at the teenage part of my life. In maturity and understanding  terms, I have never aged or matured at the same rate as my peers. I’m catching up but I still have the understanding more of a teenager than a 30 year old grown woman. I can at least be thankful that I no longer have the understanding of a child which was me up until the age of about 28. Others say that relationships and even friendships are very complex. I just cannot see that because I don’t have the understanding of someone my age. Issues with boundaries, accepting social obligation and taking responsibility for their actions – This is a tricky area where I have to be careful what I say otherwise people might start trolling me again. I don’t think it’s fair that I should take responsibility for actions that were caused by others pushing me to my very limits because I was telling them that what was happening wasn’t helping. I could feel my anxiety levels building and meltdown mode getting closer and closer. I told others around me that this was happening but I wasn’t ‘heard’. I warned everyone around me that they were doing the wrong thing and that I wouldn’t be able to take much more. I knew that I was going to reach that point. However, I wasn’t listened to because if those around me had taken any notice of what I was saying then none of what happened would have occurred. Things have to be kept calm and asking me not to do something I couldn’t help (it was made worse by being traumatised by my son’s adoption at the time) and saying that if I didn’t do it I’d lose a place on the course that I’d wanted to get onto for many years definitely does the opposite. I wasn’t acting in the way I was on purpose and they added more demand on me by saying that if I couldn’t stop it I’d lose something I valued. The more pressure that they put on me, the more anxiety built up and then when that gets to a certain point I literally go into a meltdown. And, as far as boundaries and social obligations go, I do not see either of them. I go with the simple, less complex belief that we are all born equally (well at least we are if you’re not born into royal or elitist families). We start on the same level and it’s not like we can take job roles, money, or any other thing we’ve acquired in this life with us when we do finally leave this mortal coil, therefore we die as equals too. I just don’t see the complexities around the social order of our society.

I was told growing up always hang around with those that are what you want to become. Okay, maybe I took that sentence literally, but I tried to hang around teachers etc because that is exactly what I wanted to become as a child. That is something I’d still like to do. I can still teach adults but not children because of having a criminal record. It’s never something that I’ve wanted to admit openly that I wanted to do because I don’t want to be judged. If you wanted to do that kind of thing when you grew up when I was at school then you were weird. I was the weird loner kid at school as it was because I was shy and quiet. The teachers at school told me to write things down if I was too shy to talk to them. Therefore, in a way, I was conditioned very early on to develop issues in that department because they didn’t know I had autism then. In a non-autistic child, those kinds of behaviours introduced early on in the child’s life wouldn’t stick. In my case that is how I learned to communicate and from secondary school this became a problem due to the fact that I was seen as wrong due to being unable to communicate like the other children/teenagers. This wasn’t done on purpose to me because they didn’t realise that I was more than a shy child and that it would cause me difficulties in the future.

I now get onto the one PDA trait which regularly causes me to have arguments with others that have made an assumption. Outsiders looking in always thinking that things are black and white. In someone without PDA maybe this part of the behaviours would be black and white, but not when it comes to an individual with PDA. ‘Obsessive’ behaviour that is often social in nature – This is the bane of my life because others just can’t see certain things and their assumptions have been very hurtful to me. It’s nothing about having an obsession with a particular person. It is more about wanting a friend. I’ve never had a proper female friend before because I’ve never really gelled with other females. I’m adapting as I get older but I don’t feel like a gender. Yes, I am aware that I am female because my physical appearance makes this obvious to me. I don’t feel like a male, but in my head I feel genderless. I see someone in front of me that I feel could potentially fit that mould then I will get overly enthusiastic because I’ve always wanted a female best friend. I can either love or hate another person, there is absolutely no in between for me. That is why I stay single because I know that if I decided my partner had done something that switched the love to hate, then I’d find it extremely hard to ever switch it back to love again. Then there is the mood swings and impulsivity. I can wake up with plans but completely change them on the spare of the moment. I may wake up happy but then by the end of the day I’m depressed. Either way, I’m never in the same mood as I have woken up in by the end of the day. I wouldn’t want to inflict that emotional rollercoaster on anyone I loved. 

I would love to have a partner because I’ve never dated in my life, but the strong anxiety part of me pulls me back. I have been asked out more times than I care to remember. However, my answer is always the same, No. Even the people that I have really got into because of wanting a friend so much, I would still never be able to say yes if they wanted to date me. I had a child, but myself and his dad weren’t dating or in any kind of relationship. It was purely no strings attached because this is how I wanted it. The people I’ve wanted to get to know and made it look obsessive would still be kept at arms length if we did ever become friends. I have never been able to show the whole of me. There are simply just parts of me that others will never know. It causes me intense fear to open up that far. If I do ever do start dating and end up with someone then they are going to have to accept the fact that they won’t know me as a whole person. They could be with me for a few decades of my life and not fully know me. The part of me which is PDA is something I can never completely hide, but I can hide aspects of myself underneath that.

The last parts of PDA are sensory related. I have always been confused as to why I have senses like someone with full blown autism, however, I was seen as ‘high functioning’ and ‘verbal’. Those on the PDA part of the spectrum tend to experience this kind of thing. I can hear electric in plug sockets when it’s quiet at night. The humming of the fridge sounds moderately loud to me. I use headphones and put music in my ears when I’m out in order to muffle all the noises when outside walking from place to place. I can smell very well too. I can walk into a room and smell the perfume of someone on the other side of that room. It is quite over powering when I’ve walked into a room with many individuals wearing different varieties of sprays and perfumes. Those smells also blow in the wind. I can walk down the road when someone with perfume or body spray is walking the opposite side. I literally can smell it from across the road especially when the wind is blowing in the right direction. This is actually going to sound quite weird, but I have been known to ‘smell someone’s presence’ before they’ve even walked into the room. I have done that and two minutes later they’ve walked into the room. Unfortunately, I do not have this kind of eyesight as I was born with a lazy eye. Due to having sensitive hearing and smell, I can get overwhelmed if there is too much noise and smells around me. It feels like the whole room is closing in on me. I do feel things and pick up things either in dreams or random thoughts. I don’t think that is due to PDA though, but they don’t help with ending up feeling overwhelmed due to the PDA. It is like a curse to feel things so intensely. I don’t find it pleasant but I can’t switch things off.