Additional information to support the Autism in Practice Essay.

Appendix D: My writing style explained: I want to be sure that my directness/blunt delivery of words is not misinterpreted as rude or offensive, as that is never my intention. I would like you, the reader, to bear this in mind so that we keep the channels of communication open. My Autistic differences are only ever an explanation, never an excuse. (Green. V. 2018) I am an Autistic human and I aim to project a positive light on what is currently a dark and dismal view of Autism. From positive talk come positive vibes. PNT: Predominant Neuro Type. The neurotype that currently shapes the rules of society. (Beardon, L. 2017) The Humble Hedgehog. Over the last 60 years there has been a 96 % decline in Hedgehog numbers. (Epping Forest Country Care, 2020) This decline is a consequence of their habitat being destroyed. (Hedgerow replaced by fences, food poisoned by human interference, and humans ignorant to their whereabouts) Buildings with ramps and lifts results in increased user independence. However, a Deaf person approaches reception. The hearing receptionist does not understand sign language or have any knowledge of the needs of Deaf people. The hearing person may feel awkward. The Deaf person may experience familiar distress as this is likely not their first experience of barriers. What is Autistic Masking? Masking or camouflaging is the art of artificially performing as the Predominant Neuro Type (PNT), mimicking their social behaviour or hiding behaviour that might be viewed as societally unacceptable. It is essentially a survival tactic (Winder. R, 2021) that, ironically, leads to irreversible mental health difficulties and, ultimately, a heightened risk of suicide that is nine times higher than the PNT (Egeskov. C, 2019). Taking Doctor Luke Beardon’s Golden Equation: Autism + Environment = Outcome and exploring the space between the = and the Outcome. I strongly suspect awareness of self, and the differences between self and those around you, with an awareness of what is required to experience that sense of belonging plays a huge part in what occurs within the space between the = and the Outcome. This leads me to believe that the creation of the Autistic Mask happens within that space. I see the mask’s formation as a cyclical, ever-evolving movement that causes a build-up of complex protective layers -like the skin- constant friction from an external influence causes the body to adapt or risk harm. If the friction is intense over a set period, a blister appears - Repeat this over a longer period and thickened skin forms. That thickened area feels less sensitive to touch, and this is where I believe identities start to get lost as the facade takes over- a conditioned response to the environment that I believe caused me- an Autistic person -to convincingly pose as a PNT. It may have begun as a survival tactic but, ironically, triggered a domino effect - with each piece that fell representing the deterioration of my mental well-being. This does not stop here though; I believe my owning of the facade gave way to the projection of said facade onto my child. Only when I became aware of the mask, unpicked the layers and reduced the toughened skin could I start to fully appreciate how it felt to reconnect with every bit of my Autism and therefore, sensitively parent my Autistic child as an Autistic. (Winder. R, 2021) Modifications/ Reasonable Adjustments: The need for a ramp might rarely be questioned when the need for access is more obvious. The cost of the modifications never questioned because they go unnoticed. Hidden differences like Autism don’t always have this privilege and the cross neurological theory of mind (Beardon. L, 2008) and medical model mind set makes gaining access hard. If policies already considered neurological differences and were written to include all, then Autistic people could function as they are neurologically and physically designed without the need for a certificate of Autism/disclosure and subsequently reduce the risk of long-term impacts that ignorant induced policies cause. Being forced to be someone I am not because the person who I really was, presented as an unwanted challenge. In response to this - cause and effect - I consistently and perpetually self-analyse, compare, modify, disassemble and reassemble my identity to the point of not only losing my identity but the imposter I’ve been forced to create and own is so deeply damaged that their existence, space they take up and justification of value is always under question and the go to response is always suicide. After my Autism discovery, I felt idiotic. I just couldn’t understand how I could be so analytical yet missed such a massive element of detail that held so much weight. I think my Autism discovery has been key to enabling me to be truly self-aware, driving the momentum of innate insight and presenting it in the way do. This identity cut off the power to the electro-magnetic force and the wrong labels fell off taking with them their damaging influence on my sense of self from then on. In a nutshell, the spell was broken. They may be gone but the echoes of their impact remain. Those echoes are now what I need to decide what to do with - use them to destroy my present and future, or share them, reinvent their purpose and worth in the hope that this trauma stops behind me. I see it like herd immunity. The more humans who are equipped to counter false beliefs, the more chance we have at raising the value of the term Autism and with that -awareness and acceptance can follow. I suspect my pattern spotting skills have been given the necessary details that each historic life event file has been missing until discovery day and the inhaling of facts, so it is able to solve the equations that have gone unsolved for 40 years. Like a Swan, gracefully gliding across the lake - below the water its legs are paddling as fast as they can to ensure the success of this, seemingly, effortless performance. Many years ago, before I knew my own Autistic identity, I worked alongside an Autistic Deaf lad whose special interest was the weather. In order to open-up the channel for information to pass I used his interest in the weather as a vehicle to enable the delivery of his course work. He loved it and was enthusiastically engaged. Looking back, applying the knowledge I have of my Autism, it became evident that my Autistic insight is what enabled me to tailor the course work to meet his individual needs. From personal experience being unaware of my own needs and owning the expectations of non-Autistic people meant that I had created unachievable demands of myself, which led to volatile meltdowns that, from the outside looking in, could be mistaken for abuse or poor parenting. When I start shouting my children are aware that I am overwhelmed. I have created a script that repeats: “it is not your fault and I love you both.” I have only been able to do this by firstly discovering my true Autistic identity then accessing Autistic creators work that allows me to learn from their experiences to help me develop coping strategies that protect us all. I am creating coping strategies for things we can’t avoid. For things we can avoid - we avoid because coping is not a blanket solution as it requires effort and often has negative consequences. I must choose my battles wisely. (Beardon, L. 2021) Explain the framework in diagrammatic format so it clearly defines the CAMHS criteria. (Children and Adolescent Mental Health) I believe this document/policy should exist as an accessible document to Autistic people/professionals as this reduces the need for them to disclose their differences. Familiar or Safe? I use the term familiar because familiarity is often wrongly confused with safety. My reasoning being - a human raised in an abusive environment may later look for people who can recreate this environment, because it feels familiar. Autistic context blindness. Literal thinking, unable to ‘read the room’ and know what is required - formal or informal. PNT context blindness: by wrongly assuming Autistics share the same communication framework as the PNT, undisclosed details (that the PNT don’t need but Autistics do) leave an incomplete message to decode allowing scope for misinterpretation. PNT’s are believed to see what their brain’s filter allows to pass, like a template of shapes that allow through only those specific shapes. Alternatively, Autistics with their filter-less brain, see every scenario as fresh and new, receiving all available input. (Ford, I. 2017). This cross neurological societal divide allows for the formation of misunderstandings, which often invite the PNT to assume the Autistic person is not an intelligent equal. This can trigger a change in dynamic and the value of the Autistic, from the perspective of the PNT, shrinks - leading to the likelihood of the relationship’s deterioration. This leads me to think, my so-called difficulties interpreting social cues and intentions is the consequence of the cross neurological theory of mind (Beardon. L, 2008). I can only perceive life’s events through my lens and, likely, the same for the PNT. We each speak a different language that the other can’t decode as the person who encoded it intended, like when light refracts as it passes through the prism. For me to empathise, my pattern spotting abilities rely on the pattern’s existence within my mind's files to draw on. Autism with needs met allows for the natural ebb and flow of differences. It should come to no surprise that those Autistic differences vary from person to person just like differences vary amongst the non-Autistic community and humanity. If you are surprised, then I’m glad you’re here making steps towards positively modifying your current stereotypical beliefs - be proud of that - for your change in belief has more power than you likely realise. Let me explain... Autism + Environment = Outcome. (Beardon.L, 2017.) This equation is key to the well-being of every living being and what dictates whether they flourish or fail. This includes humanity and Autistic differences. Emotional dis-regulation caused by unmet needs creating the ‘loop of doom’ (Winder. R, 2021) that spirals towards behaviours and scripts that are misinterpreted and so mishandled, which if left to form repetitive loops causes the energy to go underground until it finds an alternative outlet that may present itself as self-harming actions, which are then treated as a mental health disorder rather than a consequence of unmet needs. like a plant seeking light, if the safe routes are blocked it will keep growing, spindly and vulnerable, until it finds what it needs. The route it takes may be harmful, but it achieved an outlet. Ironically, the plant is left weak and vulnerable, no understanding of who they are and why they are different. The strain of maintaining this hollow existence weighs heavy - the burden it experiences by having to rely on other plants to support it. If they don’t understand the plant’s complex needs, then the vulnerable plant will never be able to find their true self and accept their differences. My Child’s Experience of Poor Autism Knowledge: My son has involuntary vocal stims that are a part of who he is as an Autistic child. In school, his stims were mistaken as voluntary and unnecessary. I felt this showed a lack of awareness and the importance of his needs. I lost my confidence in their ability to sensitively support him. The noises, from their point of view, are a distraction/annoyance and so he was instructed to stop. The noises stopped and all is well - except for my son. The behaviour stopped but the reason behind it still existed, which caused pain, distress and a build-up of anxiety because the outlet was blocked. Like a lab rat in a maze, that systematically looks for alternative escape routes, this cycle continues until the need is met or they die trying. Differences, often, must impact the majority before they begin addressing the situation to reduce/stop the unwanted behaviour. For example, a child biting another. First seen as a health and safety issue that needs immediate attention as no one wants anyone to get hurt but what often goes unnoticed- the child biting is in distress- it’s just not always interpreted as that. Incorrect engagement in situations like this can cause lasting trauma. If the child’s needs were met, then maybe this biting incident could have been avoided. Behaviour is communication. The behaviours presented prior to the biting likely communicated the distress and because they went unnoticed or unattended due to being misconstrued as insignificant, then the last port of call for the child was to bite in order to get their needs met and let the distress out. There needs to be, in the forefront of the minds of the trusted adults, to meet need rather than just delete the behaviour because if the known behaviour metamorphosed its presentation, then this might be mistaken as a new issue that is subsequently forced underground and again the need goes unmet. If this unmet need, then presents itself in the form of self-harm, how are the adults going to respond? Eating disorders are often a way of gaining a sense of control. No one can make another human eat or watch them 24/7 to prevent self-harming and so the school risk losing any kind of meaningful connection. Masking - Human nature - The Ripple effect. The child who creates the most ripples that ruffle the most feathers seem to have their needs met faster than those who don’t. A child who sits quietly and never challenges the status quo may not be as content as they appear. What is it that creates this facade? Fear? conditioned masking/camouflaging? Does the child even know they are in distress? How can they know if that’s all they’ve ever known? My Autistic mask/camouflage doesn’t develop all at once. It is a work of art - built up over time in response to an ever-increasing awareness the effects my differences cause to those around me. By mimicking those who, I notice, are not rejected I can achieve some degree of inconspicuousness - Cause and effect, evolving, survival tactics. This can invite the untrained eye to wrongly assume I have mild Autism or that I’m just a little bit Autistic. Being openly Autistic, so no mask/camouflage – differences are likely tolerated and may reside without critical judgement. Averted attention means no threat, which means survival tactics remain dormant and so no requirements to evolve or modify output. The mask may never exist if the brain isn’t wired to spot the more subtle or complex changes in the environment and so not responsive to how the behaviour differences affect others. This means no survival response because as far as the brain is aware, there is no need to hide the default state. Either way this can invite onlookers to incorrectly conclude this to be severe Autism. Masking behaviour and the impact on mental well-being. Masking requires lots of energy in order to suppress what is really happening internally. My Communication and Language Analogy. If Language were the vehicle and communication strategies the road that allows for said vehicle to travel, then there are many factors that need to be considered to ensure the transaction that occurs is as accurate and effective as possible. The factors being: the state of the road (potholes, rough terrain, smooth tarmac, et cetera) The make and state of the vehicle: The make of a vehicle can vary and with this the quality and reliability of the parts that make up the vehicle (treatment/care from new including the environment it is exposed to- has it been looked after, regularly and suitably maintained, fuel, oil, tyres, et cetera. Autistic people are being destroyed. It might be inadvertent, but as soon as it is known to be fact, then it should not be excused and be allowed to continue and all because of historic ignorance that sadly still prevails today. Autistic people suffer secondary psychiatric conditions such as Obsessive-Compulsive Disorder and pathological disorders. They have a much higher prevalence of suicide idealisation, attempted suicide and suicide. (Horowitch, R. 2020) Current statistics report Autistic people to be 9 times more likely to commit suicide than non-Autistic people. Autistic people are also dying younger. The average life expectancy of an Autistic person is 35 and anxiety plays a huge part in all the above, which is why we need to act now. (Horowitch, R. 2020) To be in a constant state of fight or flight, consumed totally by what I refer to as the “Loop of Doom” (Winder. R, 2018) without any explanation to justify its right to an existence is, in my experience, torture. cPTSD is not exclusive to the Autistic population nor is it an integral part of being Autistic but I feel it is something that is avoidable. Bridging the gaps By sharing an understanding of emotions, showing you hear them, reassure and give names to those emotions, demonstrating healthy and effective outlets such as: A list of outlet suggestions. raising awareness of others experiencing emotions then a sense of belonging is gained, and independence grown. Validation. Acceptance I strongly believe Autistics, learning what it truly means to be Autistic by Autistics, will gain an opportunity to feel empowered rather than defeated by their differences - leaving their self-fulfilling prophecy positively charged. Because societies values are driven by the culture of the PNT the Autistics alternative way of thinking is often perceived as strange or wrong - resulting in the potential benefits of this alternative approach to go unappreciated and therefore overlooked. Equally, Teaching the PNT about their differences in comparison to Autistic differences could enable the PNT to see details their filter, likely, doesn’t allow. That way they get to see the imperfections of their societal values. Maybe then, Autism has a chance at acceptance. Autistics are commonly drawn towards animals more than people. Probably because animals don’t judge, their reactions are natural consequences. Humans, on the other hand, are seen to be unpredictable with complicated, seemingly illogical reactions making for an often-unpleasant experience for Autistic people. Disassociation: Feeling disconnected from yourself, your emotions and the world around you. This can be a consequence of overwhelm due to unmet needs or a hostile environment. The more often the exposure then the more severe this state can become. Right to a refusal. What if a parent refuses an assessment for fear of the label? Surely if there was no need for a diagnosis and differences accepted as a natural neurological variant there wouldn’t be any need for any of this process, which in my experience was extremely traumatising. The chances of parents being Autistic is very high and so with this they are probably dealing with an Autistic parent who doesn’t know their true identity and is very likely Autistic with trauma. Many parents resist a diagnosis for fear of the label because of negative connections with the word Autism. Many parents are resistant to change. Many parents fear what their child’s future holds after diagnosis even though their child has always been Autistic. This tragedy model lens may taint the image they once had, consequently, experience a grieving process for the child they dreamed of that never existed. they will just learn the correct label/identity so that they can find a better path. If the term Autism were just another term for a different way of thinking rather than a deficit or disorder, then maybe people would be less resistant to being identified or having a loved one identified as Autistic. Communication needs to be seen as a two-way street. We are each responsible for the part we play, and we must be flexible enough to allow for differences in how we and others encode and decode information because we don’t all have the same experiences, and it is this that influences how we perceive and articulate our environment. Example: sending information from a Windows PC to an Apple Mac requires the relevant skills. Different operating systems- each with their own wiring = potential for errors. telling lies can be a method of communication. Lies can be a marker of low self-worth as the lies enable that child to create a facade - inviting others to believe they are worth more than what they themselves believe. Behaviour As defined by Oxford Languages: “The way in which an animal or person behaves in response to a particular situation or stimulus.” The connection between a stimulus triggering a behaviour seems clear to me, which invites me to wonder why this publicly available definition isn’t always applied? Is it that the term behaviour has lost its intended meaning, and instead of being seen as communication, is mistaken as a mark of disrespect? Language As defined by Oxford languages: “The principal method of human communication, consisting of words used in a structured and conventional way and conveyed by speech, writing, or gesture.” “Each symbol is both created and shared in the act of communication. It is during the communication about things when things develop names.” Ian Ford. (A field Guide to Earthlings.) Choice of words and what each party takes from that, is heavily influenced by experience and the current values of those words, leaving opportunities for the intended messages to get lost in translation, leaving behind misconceptions and wounded relationships. Qualifications and experience: Systematic Satisfactory Autism training: All adults to have PgCert in Autism before they can engage with Autistic humans. This is because Incorrect engagement = long term, irreversible damage to the Autistic individual. Without the relevant and satisfactory qualifications and experience a professional can become a bull in a china shop, except in real life the china is human. The pieces may be glued back together, but the stories the repairs tell, the trauma they hold will forever exist and their identity dulled. Anxiety Autistic and PNT anxiety The word may be the same but the frequency, duration and intensity for the average Autistic person is likely very different to that of the PNT. These sentences. “I broke my nail.” “I broke my neck.” They are both breaks but one is likely an inconvenience, the other- life-changing. Autism + Environment = Outcome. (Beardon. L, 2017) A positive, unmasked outcome indicates a happy Autistic person. A negative outcome signifies a distressed Autistic. The stability of the Autistic relies heavily on the success of the encoded message. This requires a solid understanding of the complex possibilities surrounding a natural Autistic existence. Autistics have a right to acceptance and to feel they can be openly Autistic. Stimmimg needs to become background noise rather than drawing unwanted attention that brings uninvited opinions such as “That’s inappropriate, naughty or an annoyance/unwanted distraction.” The disapproving look, the rejection, sends the subliminal message that “Autism isn’t welcome here- you should stop being you for the sake of my comfort.” What is Stimming? Stimming, or self-stimulating behaviours can take the form of repetitive movements or sounds, mouthing objects, scent inhalation and more. All humans stim, its just Autistic people stim more often with greater intensity. (Pietrangelo. J, 2017) Understanding the child’s method of communication. Consider these factors: Venue; Where? Is the environment Autism friendly? If not, bring in the Autistic professional’s insight. Person: With who? Is this person seen as a safe person/someone that individual feels at ease with? Type of communication: What is the individuals preferred method? Signed, spoken, written, pictorial, hybrid? Are all professionals prepared? because any sudden changes could be the make or break of a successful encounter. The potential long-term consequences for the Autistic person risk irreparable harm if exposed to incorrect engagement. Autistic Distress, not challenging behaviour, or disruptive. Labels. The value laden symbolic web of the PNT. Correct labels save lives and wrong labels destroy them. Many of the professionals that form part of the diagnostic process have a limited and/or outdated understanding of Autism, which can jeopardise an accurate diagnosis. If we rely too heavily on the value laden symbolic web, then change will likely never happen because change requires an input of detail that has not yet been considered. I feel we need to be asking consistently and perpetually: Is that value true and relevant? The ability to adapt to your environment, in my opinion, is a type of intelligence. If you can’t adapt, then you fail. In nature you die/get eaten. Meeting a human need is, in my opinion, the focus irrespective of diagnosis. Communication. Communication is complex, language is the predominant form of communication, but behaviour is also a significant element of communication. Problems occur when communication fails to initiate or breaks down because of crossed wires, different experiences and values/meanings behind labels and behaviours. It takes effort, a two-way street to secure an effective channel of communication. A healthy symbiotic relationship is required to keep the momentum going. Cross neurological differences need to be monitored to ensure the balance of Cross Neurological Theory of Mind (Beardon, L. 2008.) and the Double Empathy Problem (Milton, D. 2011.) Every effort needs to be applied in order to effectively address potential issues before they occur, otherwise people suffer unnecessarily. The Low Arousal Approach. With any inkling of Autism, the team should engage as per the satisfactory training, rather than waiting for more evidence. Time is of the essence. Engaging wrongly can leave lasting negative consequences. Even better, engage the whole service with the use of the low arousal approach (LAA) so it becomes a fundamental element at work. (Tenacious, R. 2021) LAA. The Low Arousal Approach is a non- confrontational, person-centered method that aims to prevent and de-escalate. The Low Arousal Approach has four key elements: 1. Reducing demands and requests to decrease potential conflict. 2. Avoiding potential triggers such as touch, direct eye contact, and removal of spectators. 3. Avoid non-verbal communication such as aggressive/overbearing postures. 4. Challenging current beliefs of carers regarding the immediate management of behaviours they see as challenging. For more information LAA, please contact, Rachel Tenacious: AS.APMidlands@gmail.com. The Current Assessment Process. The NICE guidelines and DSM-5 are used to create policies like this one. Were you aware of the research that highlights the unreliability of the outdated, biased and pejorative Autism theories are currently the backbone to the DSM-5? This would mean that anything stemming from this is likely inaccurate and so Autistic people are being compared against a criterion, that can only create a self-fulfilling prophecy of tragedy and lost hope. This pejorative movement has been proven to cause long term harm to human beings whose identity, Autism, has wrongly been withheld or dragged through the mud causing its value to plummet and society to reject. My experience of the Assessment Process and Waiting Times. The current assessment process is, in my experience, an unnecessary, stressful and daunting process that is not designed with Autistic needs in mind with poor communication, having to wait (waiting times being anywhere between 12 - 36 months), very little positive intervention and most of that positive intervention not being widely known or accessible. The Framing Effect. Two yoghurt pots. One says: 80% fat free, the other: 20% fat. If you are conscientious about your health, then you will likely be taken in by the 80% fat free. It might just be semantics, but this phenomenon has the capacity to influence life changing decisions. (Peng. J, Li. H, et al, 2013) Before I started this course, I felt I had a good command of the subject, but I do feel that my journey from the beginning of this course to where I am now – approaching the end of my course – that I now have an awareness of how much conditioning I was owning as my beliefs without question - of how much PNT influences had on how I perceived myself which then was inadvertently projected onto my child. How frightening that is! I believed it’s what lead me to I feel sorry that I had passed on my differences when really had I been surrounded by positivity in connection with Autism then I do believe that my self-fulfilling prophecy would have altered my trajectory to one that mirrored my innate potential. Here is the link to my blog, Little Bear in the Wood- An Autistic Insight, where you can find my work on the three main theories of Autism and how they negatively impact the Autistic world. https://littlebearinthewood.wixsite.com/littlebearinthewood My rational for including this. I feel it would benefit the reader and enable them to gain a stronger understanding of the subject of Autism and the theories surrounding it, therefore facilitate towards a greater awareness of need and the biased pejorative research that fed the autism stereotypes.

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