‘A PDAer will not accept anything on face value, not even themself.’

Guest blog post Listening to Harry Thompson on his Facebook live today asking for contributions to the essence of PDA has inspired me to offer my personal musings on what PDA is. It’s definitely not pathological demand avoidance. No demands are avoided when the world is on its axis but the problem is that the world has a tendency to keep tipping off! If anything, PDA would be better explained as an extreme intolerance of uncertainty. The only way for a PDAer to survive is in a state of complete freedom and autonomy. Every other state detracts from the PDAers life force, to varying degrees. The external world can feel like a prison with torture chambers. The internal standards can also demand ‘correctness’ or suffering if correctness is not achieved. Life is lived as a participant observer because the evidence about how to be human comes from living life first hand. This can lead to ending up in situations where the ‘participant’ part of the experiment can lead to precarious and even life threatening situations. The boundary for what is good, true, safe, healthy, wise, educational, fulfilling, interesting, useful and all of the opposites can only be identified by stepping up close to or across the boundary. Other people’s views can be trusted and used as a guide, but the PDAer has to have evaluated that persons credibility first and agreed that they are someone who can be trusted and respected, they do this not by judging a persons acts or words, necessarily, but by knowing their heart. This process can be instinctive and immediate or can require evidence and develop over time. Sometimes the PDAer, especially during the most treacherous of developmental periods in the lives of many: childhood and adolescence, can give the impression to parents, teachers and professionals that they ‘just don’t care,’ or ‘make bad choices and cannot be trusted.’ Their need for experimentation can frighten those that don’t understand that the PDAer wants to survive, and this is their way of going about it. What actually threatens the PDAers life is attempts by people to limit their freedom to explore the world and find their own answers, which can, ironically lead to the PDAer contemplating suicide or setting themselves on a steady course of annihilation. That is not to say that the existential angst experienced by the PDAer in their search for truth and meaning doesn’t also threaten their life but aiming to catch the PDAer and trap them within a set of rules imposed by people who the PDAer sees as unqualified to lead will promote utter devastation, often expressed using the 5fs. There will be no lengths that the PDAer will not go to, to ensure their freedom. Don’t push the PDAer, support them in their journey and you will see that they love life. Listen to what they tell you. If they tell you that they want to do X or Y, then allow them to do it, if you can, because they will know best what is right for them and will cease to engage in the activity if they find that it wasn’t right for them after all, or that it isn’t right for them at the moment, for any number of reasons, even if they desperately want to do whatever it is. In one respect it’s the extreme need for absolute rectitude and justice. Things need to be just, correct, evidence based and open to constant evaluation and revision to ensure that these standards are upheld. No-one has any more authority to deicide what is true and real than any other. That is not to say that there are no people who have, indeed, contributed a great deal to the exploration of human ‘being’ but there are an awful lot of people who merely reach a certain age or professional status and believe that they’ve therefore gained a superior insight into what it is to ‘be’ and how life should be lived. This can include teachers, parents and people within various professions and institutions. The PDAer cannot accept this fundamental injustice and will do everything to escape from the snare of liars and cheats. If you can tell the PDAer why they should be doing, thinking, saying something and they are in agreement with it, then you will not see any objection. However, if you explain why and they do not agree with you but you then aim to force them to follow your rules, ideas, plans etc… then you will see them react in any number of ways to protect their freedom. If there is too much injustice in a given situation then this can lead to non-verbal communication in the form of explosive and / or destructive meltdown. However, essentially, the PDAer is one of the most reasonable people you will ever meet if they are in their optimum state, because for them it’s all about reason and logic. Also on the matter of things being correct, the PDAer and autistic, will not accept mistakes or misrepresentation. That is not to say that they don’t tolerate or expect anyone, including themselves, to make any mistakes, it’s more that the mistakes, once identified need to be corrected. For example, if the PDAer is described by someone in a way that definitely does not represent the what they believe or intend to say then this can cause the PDAer to seek to correct that person. Stereotyping, pidgeon-holing, assumptions based on race, age, gender, accent or whatever are something that the PDAer rejects. Generalisations and not welcome unless there is enough evidence to make a generalisation. Ideas need to be specific and precise and you will find the PDAer and autistic spending time seeking clarity on matters small and large, which can come across as pedantic or overly critical to those who do not understand the reasons behind the outward expression. They tolerate mistakes in themselves even less well. Lots has been written on this under the banner of ‘perfectionism’ and ‘rejection sensitive dysphoria’ (which, are two of the areas where ADHD and PDA overlap, in my opinion). The most extreme way of managing this can be excessive people pleasing or not taking any kind of risk, whatsoever, and living a very restricted life. The PDAer may seem harsh or caustic at times but in reality they suffer deeply at the idea of the suffering of others, man or beast. They are essentially humanitarian, which is why hierarchy is abhorrent to them as it requires the subordination of one being to another, and that is a kind of enslavement. However, you will often find the PDAer at the service of others, often those who are in vulnerable positions, in order to protect and ensure their humanity. The self. It is difficult for the PDAer to develop a sense of self. This is not to be confused with a sense of justice. While the PDAer can have a strong affinity with certain causes, which may appear to be ‘who they are,’ they often have an elusive sense of self. They self is part of the PDAers exploration. They will often not commit to a given identity because they are not sure yet, without having all the evidence, which their true self is. How can they decide and commit to who they are without having explored all that there is to explore about human existence, and that takes a lifetime, doesn’t it? So the self can feel elusive to the PDAer who will try out different selves at different times and will wear different masks when interacting with others, until they have a better idea of who they are and whether they are prepared to share that intimate and private journey with anyone else. This will often lead people to see the PDAer as a ‘social chameleon,’ or ‘not sure of themselves.’ For the PDAer this can cause them to feel uncomfortable with uniting the different ‘selves’ or ‘characters’ that they play out in public, so mixing different groups of friends is often an excruciating and nerve wracking prospect. As they develop the PDAer can learn to become more ‘authentic’ but this process can take some time and is unlikely to be wholly complete while there is still more to learn, which, for the PDAer will be when they take their last breath. Despite this often tentative grasp on self-identity the PDAer will not accept outsiders defining who they are based on preconceived ideas, such as diagnostic criteria, race, gender, class, age etc… as mentioned before. Worthy of note, and ironically, there is the potential for the PDAer to dissociate and be open to influence and drawn into situations in search of this development of the self. This area of exploration for the PDAer can be the most profound and the most dangerous, but once they have enough experience to have a firmer grasp on the ‘self’ they can be a great source of knowledge and wisdom, mainly because their (re)search will have been so thorough. It will have combined lived experience, book and multi-media learning and will generally not venture into areas where they are unable to have lived the experience. That is not to say that they do not have an opinion on almost everything, they often do, as they are typically very contemplative individuals, but they will usually not claim to be a commentator, nevermind an authority, on that which they do not have first hand experience. Expectation and praise. This is so complex in the PDAer. It is rooted in perfectionism and RSD, on which there is lots written. The PDAer sees the need to meet the expectations of others and a direct threat to their freedom. They don’t want to commit to being the same way all the time or feeling s certain way in advance. If you say to the PDAer, ‘you are such an amazing friend,’ they will feel suffocated by the need to maintain that standard of behaviour. The question in the PDAers mind will be ‘so if I behave in a way that is crap and let you down, will I disappoint you and will you reject me?’ Sometimes it’s easier for the PDAer to keep people at a distance in order to manage the onslaught of demands to act a certain way or maintain friendship exchanges, even when they don’t feel like it. Often people see this as not being a good friend, when for the PDAer things like frequency of contact have no bearing on how they feel about a person. Often the PDAer will end up with very few people who are able to understand this about them, i.e. people who know their heart. This processing of expectation and praise can be applied to any relationship or setting and can be crippling to the PDAer. The need for structure and routine but defiance of the very notion. Because the PDAer often has an elusive or changeable sense of self or direction, in their life search and journey, structure and routine can help them to feel grounded. Ironically though, they abhor boring, stuffy, conventional, ways of being because they offer very little in the way of personal growth. Not only that the PDAer is quirky and queer by nature. However, there is often a misconception about being quirky or queer. Often ‘followers’ are found wearing outrageous clothing or belonging to alternative groups. You may find the PDAer lurking among them but you may also find the PDAer in very mainstream settings or with no outward expression of their quirks, such as piercings or tattoos. The quirky and queerness is more of a proclivity or propensity. They need to fulfil the need to laugh and get excited, and this will almost certainly be expressed through something extreme or outrageous. They have an innate understanding (or at least a very early understanding) that nobody knows why we are here. The enormity of the universe and existence makes for an overwhelming desire to just ‘go crazy,’ lighten things up and have a laugh to get through it all. Things which the PDAer will undoubtedly struggle with are romantic relationships, conventional employment, friendships, familial relationships, nonsensical and illogical rules or laws, sensory overload (as they are hyper-sensitive) and self (loving/loathing). That’s all for now and that’s my personal view informed by lived experience. There’s so much more to say on independence, control, need for certainty, shame, drive, ambition, creativity, performance, attention and much, much more. I don’t even know if it has anything to do with PDA but I seem to be nodding my head a lot when other people who call themselves PDA are talking their truth. Many of these ideas and observations have been made by me for many years now, certainly long before I ever heard of PDA, others much more recently and have been influenced by the literature and discourse on PDA, ADHD and autism, but only in as much as it relates to what I have lived. I realised I was ‘Aspergers’ in the 90s, but only because that was the closest definition of what I was (what was wrong with me, in the view of me and many others at the time) that was available. I have a diagnosis of ADHD and a diagnostic opinion of autism (basically, the DISCO without informant reports), which mentions PDA in the report, so I have decided to share my views on this basis alone. Also because my son is his own brand of neurodivergent too, but probably not essentially PDA  Nikola Duncan.

Is Charlie racist and rude? Does he need excluding for his behaviour? Or is Charlie struggling in a neurotypical world where he is mis-understood?

I wrote this blog a couple of years ago https://www.smarttalkersblog.com/2019/02/doesnt-listen-is-rude-homophobic-racist.html In many ways this could be Charlie about whom I’m talking. It wasn’t, I hadn’t met him, but I meet hundreds of Charlies a year, and I have done since 1986. Charlie is autistic and a part of him being autistic is that our neurotypical world does not suit him. He appears just like his peers: bright, chatty and able but Charlie is actually from a different culture. In the autistic world, the typical rules of politeness or saying ‘how it is’ do not apply. As part of being a neurotypical adult working with autistic teenagers it is our duty to understand this and to deal with it. 1. Say it as it is: the bluntness of autism If a 14-year-old teenage boy told me I was fat and ugly I might be offended if he was neur0- typical. If he was autistic, I would thank him for pointing it out and realise that he was just telling me the truth. This descriptive bluntness may also apply to people’s obvious ethnic backgrounds or other neurotypical ‘sensitive’ topics. But that's what it is; it's a description, it is not an insult. So, if an autistic teenager calls you a ‘black idiot’ then you could be offended perhaps by the ‘idiot’ but not by the black descriptor, if you are of Afro-Caribbean origin. He doesn’t mean anything derogatory. 2. The wanting to fit in Other autistic teenagers will want to be seen to fit in so may use phrases or sayings that they have heard of the children use. These may be ‘cool’ children, who autistic teenagers would like to emulate . They may want to impress these cool children or indeed other children . However, it does mean they will be using phrases or words they don't necessarily understand and certainly don't understand the full implication of using. Therefore, the consequences of this sort of language used in school should not be the same as for neurotypical children, it is part of reasonable adjustment. A child like Charlie responds well to discussion about such issues . He does not want to offend or to be rude. He does want to fit in. 3. Neural response By the time a neurotypical child is a teenager, we expect them to have control over their emotions and their emotional outbursts in school. However, non neurotypical children cannot be expected to have this same control. It is unrealistic. Professionals must understand the difference between cognitive control and neural response. Neural response is automatic, so children and young people are likely to do things in the heat of the moment without actually being in control of what they do. It’s a typical stress response e.g. the fight as part of fight, flight or freeze. Trauma informed schools are extremely good at understanding the neural response of an autistic child which may lead to seemingly undesirable behaviour. A neural response is the key difficulty of a child with demand avoidance and MUST be seen as an anxiety or panic attack. As with anxiety or panic attacks, the child needs supporting not punishing. 4. Executive function We must know more about executive function as professionals working with ND children and teenagers . When we do, we realise that they may have no filter, so this will be another reason to ‘say what you see’ without the typical ability to think twice before you say anything. This is an issue with the prefrontal cortex so shouldn't be punishable but can be guided when there is a rapport and trust between professional and child. I could go on but I'm short of time this morning however it is imperative that Charlie’s behaviour is understood. His behaviour is communication; he's communicating to us that he's having a hard time. Professionals must, as part of reasonable adjustment find a way of dealing with this and not seeing his responses as illegal, unlawful or punishable. I actually find Charlie to be a completely delightful young man!

The Wrong Environment For A Child Hold on to your seats…. This may get a bit ranty!!!

I absolutely love my job, the autistic children I get the privilege to meet and get to know are incredible. I’ve said it before but it needs saying regularly; they are brave, resilient, and beautifully natured. This makes it all the more frustrating, overwhelming and upsetting when it comes to doing the hardest part of my job….. Fighting for their rights, fighting for what they need and more importantly fighting for what they deserve. This part of my job leaves me with days of anxiety and overwhelm.

What needs to be made clear is that autistic people aren’t going anywhere, in fact quite the opposite, autistic people grow up to have autistic children……. Yes we literally are increasing in number…. Some refer to this as an autism epidemic!!! Well that’s bloody charming isn’t it! In fact it’s disgustingly insulting. What are we some form of disease that is a threat to human kind? NO, we are a community of good, strong hearted people, people who drive change, people who invent and create amazing things. We are the best Drs, nurses, scientists, teachers, animal conservationists, eco warriors, parents, advocates …. The list is endless.

So prevalence is increasing, I already see at least two autistic children in each class of 30…..a much higher number than recorded. So why, oh why, can’t we change the school environment to meet need?

What ‘the powers that be’ need to know is that autistic children are the (to quote Jo Billington) ‘canaries in the mine’. They are the sensitive ones that are feeling the pressure of mainstream class sizes, increased educational expectations, behaviour policies, over stimulation,  school uniform policies……….but actually aren’t ALL children starting to show signs of this?

 YES! Mental health problems in children are on the rise! Making a school ‘autism friendly’ isn’t making a school ‘neurotypical child un-friendly’ in fact quit the opposite…. It’s making a school child friendly. Autism friendly strategies are actually all gold standard best practise for all children! What child wouldn’t benefit from smaller classes, more outside learning, more experiential learning, more moving while learning, more emphasis on emotional literacy and self-care?

School life does not reflect adult life!

A common argument I hear against reasonable adjustments is ‘they have to get used to it’, ‘we have to prepare him for the real world/adult life’.

Well that’s a crock of rubbish!! In what job would you be told you can’t use the loo except during designated breaks! In what job would you be made to sit on a hard floor squished up next to a colleague and sing songs? Why would a person who works best with their hands and while moving opt for a job sat still and quiet? The adult world is a much better place for autistic people. In fact mainly due to autistic people….. We can now order food online and avoid supermarkets altogether, we can work from home, we can take breaks when we need them, we can socialise with people when and how we chose to! Sometimes not face to face, sometimes not with those our own age. 

What are the repercussions?

Well if you are a parent of a child who’s needs are unmet you will know all too well the impact L however if you don’t then you should.

I’m going to outline this simply and bluntly; the children I work with who haven’t had needs met in education and/or been subjected to an environment that is inappropriate suffer the following;

Self-harm

Trauma

Low self esteem

Feelings of failure

Depression

Anxiety disorders

Suicidal ideation

Suicide attempts

Agoraphobia

Mis-trust of any adult outside of the home

Separation anxiety

Environmental mutism

Tics

Many children are unable to return to school. Even the mention of school can produce a trauma response (fight/flight). A child becomes a ‘school refuser’ which in itself it’s damaging and incorrect, as the child is simply in self-preservation/survival mode at this stage and so are UNABLE to attend not refusing. It can be likened to a child ‘refusing’ to jump into shark infested waters! Or the term I often use from a parents perspective ‘it feels like you are sending the lamb to slaughter’ (I’m not great with subtle words!) My experience of this comes from children of all ages, already showing these symptoms from as young as 4years old.

  

What needs to change?

Surprise surprise I have a few ideas about this!!! I will simply list them!

More funding to provide;

ALL school staff training in autism, PACE & trauma. Up to date progressive thinking Dr Luke Beardon style training! Including MDSA’s.

Smaller numbers of students per class

More staff who have been invested in through training and care.

More pastoral support

More SENCo time

More specialist input, such as educational psychologist, occupational therapist and speech and language support in mainstream schools. A holistic approach.

Environmental changes;

Less ‘overstimulating’ classroom settings and layouts

Moving while learning

Flexible/positive behaviour policies (or just scrap them!)

Flexible approaches to uniform

Flexible approaches to teaching

More animals, nature and outside!

Curriculum changes;

Experiential learning

Functional learning

Child lead learning

Emotional/mental health/self-care education

Less attainment/progress pressure (for teachers and students)

The list could go on. I truly believe that if this was how mainstream education looked, we would be seeing less children needing EHCP’s, less children needing specialist placements and less children needing to access mental health services. And most importantly; less children suffering,

I know this is possible, I work with and know there are some amazing schools, SENCo’s and teachers that make this happen or try to make this happen for their students. I know many amazing people’s hands are tied by funding restraints, policies and ‘the powers that be’. The rigidity and inflexibility is damaging.

 How do we make this a reality?

I don’t know!!! I am not great at big battles and making big change! I make small changes for small people! Well I would like to think sometimes bigger changes for children and their families. But this is BIG. I talk with many about opening a school like this, I already have a team of staff who want to work in a school like this!

I wish I had as many viable solutions as I do issues with the system.

https://www.facebook.com/BehaviourSupportWiltshire/?ref=aymt_homepage_panel&eid=ARDVXmCKu3RBKnhBQlPGzw4dc0VjgvXr8sbUZdNYBUMeFHAKBOwD_EcBw9rydErpkFrRocOoCFXdqAny

Welcome Tara

Hello, I am Tara and I will be working with Small Talk speech and language therapy as a speech and language therapist based in Rugeley. I am excited to share my journey as a speech and language therapist with Small Talk as their commitment to “helping children achieve their true potential” is very important to me. I will mostly be working across Staffordshire and the surrounding areas, although as a car driver I will be travelling further afield on occasions. I will also be providing teletherapy (online therapy/advice) during the current circumstances and going forward I will continue this service for those who would prefer to use this method and it is mutually felt suitable.

I have two children, both currently in primary school, who love all things Pokémon, Roblox and Minecraft. They also love the outdoors and we often visit parks and various National Trust sites to connect, explore and have some much-needed freedom in nature.

My youngest had speech and language therapy between the age of 18months and 4years which sparked my interest in the field. I feel that this has given me a unique insight into working as a speech and language therapist as I have personal experience of navigating and working with services which helps me to genuinely empathise with the parents which I work with. I will not bore you here with the details but feel free to ask me and I will talk for hours about my boys.

Qualifications and experience:

I have a BSc (Honours) degree in speech and language therapy and a diploma in children’s care, learning and development. I have experience in using Makaton with my children and in educational settings. I have started a level 1 BSL course during lockdown which I plan to progress with to develop my skills (I’ve shared it now, no pressure) following a wonderful placement working with d/Deaf children which made me think differently about the ways in which I communicate with others. This is one of my in-progress qualifications as it will take time and practice. I have completed a number of introductory courses to increase my awareness in a number of areas and welcome any questions about these.

My clinical experiences have been with a range of individuals across all age ranges and I have been fortunate to have experienced working in a variety of settings including acute wards, community clinics, children’s centres, individual’s homes, care homes, preschools, nurseries, schools and SEN provisions.

What can I offer?

I can provide screening, detailed assessments and personalised therapy for children and young adults with speech, language and communication difficulties.

I can also offer communication groups, as well as training and support for parents and those working with children and young adults with speech, language and communication difficulties.

I am keen to work with other professionals to ensure that individuals and their families receive the most appropriate support.

I have flexible working hours and I am available both in and out of term time. 

Please feel free to contact me should you have any queries. If there is one thing that I have learnt during my years as a parent and a student is that “no question is a silly question” so you are more than welcome to contact me. You will often find it is not a ‘silly’ question and often a question that others have asked before or many are wondering the answer to.

You may see me wearing my tinted glasses at times, I don’t wear them all the time. So, here is a picture of me with them on so that it isn’t such a surprise if you do see me with them as they do look a little bit different. They can look different colours at times, magic glasses! Some people say they look a bit like sunglasses, although I wear them inside as well as outside.

 

Tara Wilson

tarawilson@smalltalk-ltd.co.uk