• My Autism Diagnosis

    Intro

    In June 2017 I was diagnosed with Autism Spectrum Disorder, which is a mental disorder that occurs since birth in which one cannot understand social behaviour and struggles to interact socially, as well as an inability to filter out one’s senses. Symptoms are discussed in more detail in this post later on.

    What I have is an atypical version of Autism called Pathological Demand Avoidance (or PDA), that is new and still being researched. It has been considered part of the Autistic Spectrum by the National Autistic Society in the UK.

    Due to being atypical, I spent my entire life until recently being undiagnosed. I’ve written this blog post to explain my symptoms.

    One of my symptoms is an inability to be concise and summarize my words. I have tried my best to edit this blog post and keep it short. However, if you are finding it long, I have split the blog post into sections, and ask you to please read the section “things people say to me” first, if you find you cannot read all of this.

    I’ve gone through immense effort to write and summarize this, and I hope that you can please take the time to listen to my symptoms, and hear me out. For the first time in my life, I have an opportunity to explain my behaviours to you in a way that can hopefully be communicated. I am in despair that you won’t read this, and I understand it is long, but I would really appreciate if you could. Most of my relationships have failed due to being unable to explain what is really going on inside of me, and now, I can.

    I ask for your patience in reading this, hopefully your forgiveness, and mostly, your understanding. I have tried as I said to summarize, but it is very difficult for me in general, let alone to write a post that includes my emotions, yet still keeps it informative and concise. To describe my brain, and how it works, as well as my feelings, is a large endeavor. I have decided to do a bit of both, and will probably sound robotic in listing my symptoms, mixed with deep emotions of how things affect me.

    Thank you in advance.

    How it came to be

    Disclaimer: this is the longest section due to letting myself be free with my emotions in explaining my story. Please give it a chance. If you truly can’t, you can skip it.

    The last few years of my life just got worse and worse. I lost almost all my friends, and have always struggled to maintain romantic relationships for longer than a month. I was berated and shouted at by everyone, and losing all those friendships was very traumatic. I am still used to be being blocked on social media by people, and got used to being blocked by up to 3 times a week. The worst week was 10 people in a row, which was one of the low points of my life.

    I am at the point where I have become afraid to even speak, especially when boundaries are placed on me and people ask for space, because I am afraid it will come out in a long message or I’ll get shouted at or blocked.

    When I eventually discovered Autism oneday online, everything made sense. Suddenly there were people describing exactly what I go through, people who were exactly like me. They even said they couldn’t summarize their words. I felt that I had found a key, something to explain my symptoms to others. I was beyond tired of saying “this is who I am” and having that not be understood or taken seriously as anything more than an excuse. I finally felt I could explain how hard I was trying, how my behavior was beyond my control, and that the things people consider easy and normal, were not only difficult for me, but in some cases, near impossible. I have tried so hard to explain to people, and felt as if I had been lost inside a black hole, where everything I try and explain is not heard. Finally, I had a way to explain, and I hope that now, you can hear me…

    In a few short days, I had written and structured this entire blog post in my head. But I didn’t write it down until 10 months later, for I had a long journey ahead of me that I didn’t expect. Being atypical, my Autism was very hard to diagnose, and I fought for 7 months for the diagnosis which I eventually received. A few months later, after diagnosis, medication and therapy, I am finally rebuilding my life. One massive part of that is reaching out to everyone I lost. The feelings of being unheard, and misunderstood, run so deep that they are part of the reasons why I have so many triggers, have landed up exploding on people swearing at them. The past few years escalated to such a degree that I have probably torn up many of your relationships with me, in exasperation, for being called selfish once again, or being told to meet your expectations that people without Autism can easily do, but I cannot.

    Without further ado, this is everything I have to share.

    What is Autism

    A normal person’s brain has 100 Billion neurons at birth. As one develops, neurons that are not being used, naturally die out. This process, called pruning, is completely normal.

    With Autism, the pruning doesn’t occur as much as it should. Therefore, one’s brain grows abnormally, and has an excess of neurons. This is also why the Autism is so diverse between individuals as the brain can develop (or not develop) in so many different ways. Think of a hedge, when it is pruned, it maintains a controlled shape, but without pruning, can grow wildly in any direction.

    Autism is a spectrum disorder, meaning that one can range from severe – wherein one might not be able to speak, dress themselves, etc. and needs high-care, often living in a mental institution or at home with constant care-taking – or range all the way to high-functioning, where I am. High-functioning Autism was until recently called Aspergers syndrome, but now that term is no longer part of the DSM-5. I consider myself high-functioning Autistic with an atypical version of Autism (Pathological Demand Avoidance).

    I do not like using the term “mild” to describe my Autism, as it has affected my life deeply, and continues to do so throughout every day.

    My Symptoms

    Disclaimer: this blog post is about what I experience personally due to my atypical form of autism. Not every symptom I experience is true for other Autistic people. Autism is a very diverse spectrum and most people on the spectrum have different traits. That being said, I’ve tried my best to cover most of the traits in ASD and specify which ones I do or do not possess.

    Traits I do NOT have:

    • – Inability to read facial expressions or verbal tone – I am perfectly fine with this.
    • – Monotonous voice / expressionless face – also perfectly fine.
    • – Repetitive motor patterns such as hand flapping etc. – my mannerisms are perfectly normal.

    Ie: on the surface, I look totally normal.

    My traits I DO have, are listed below in larger sections:

    Inability to understand social behavior

    The pruning on the social parts of my brain didn’t happen. As a result, I have the social maturity of a child, and don’t have the social restraint or understanding of an adult, even though I have the mental and emotional maturity, as well as drives for fulfillment of an adult (such as career or wanting kids in the future etc, i.e. I don’t still want to just play with LEGO).

    • – I struggle to give space, as well as to notice boundaries of others and even my own boundaries (which is very confusing).
    • – I struggle to analyze social behavior and cannot understand it. Imagine a subject at school you just couldn’t grasp, it feels similar to that.
    • – I don’t pick up on social cues or hints.
    • – I struggle with give and take in relationships.

    Mental Blindness

    Imagine being blind or being in pitch-dark. As you walk through a room you are apprehensive that at any point you could bump into a piece of furniture. Sometimes, you even expect to hit something and don’t. This is how it feels for me socially. I have gotten to the point where I am terrified to even speak because at any point, I’ll be talking in what seems to me a normal way, and the next second the person is shouting at me, calling me selfish, blocking me, or the worst of all, ignoring me. In social situations I talk to people and at some point they just get up and leave, I think they’re going to the bathroom and they’ll be back to talk. They don’t. I eventually realize I made them uncomfortable. And I don’t know what I did..

    Please try not to shout at me. Please do not ignore me. I cannot pick up hints. Please come to me and tell me what I did wrong so that we can discuss it. If you don’t want to speak anymore, please tell me..

    Sensory Overload

    Inability to filter out my senses – I pick up more sensory input than normal due to having excess of neurons. I cannot filter out movement (people walking around the room, when someone stands too close to me or touches me I freeze up for a few minutes without being able to move), Sight (light doesn’t bother me terribly but I used to cry as a child when I saw bright lights. Colors such as red or yellow make me angry and jump out at me), Tactile sensations such as my clothes, sweatiness etc. as well as physical touch, Smell (a dog’s breath makes me scream), and Taste (I can’t eat bland, dry or sweet food). For people who are spiritual, I also can’t filter out energy and I feel it very easily, even across social media and up to hundreds of metres away. Being in a public place can be very overwhelming. Even having one other person in the room can be.

    I have to shower 8 times a day because if I get even a little sweaty, it feels the same way you would if you were drenched in sweat. I cannot eat certain foods as the texture or taste is just too much.

    The most difficult and prominent sense of mine is sound. I can’t filter out sounds. You know how when two people speak to you at once, you switch your attention between them and can’t hear either due to not knowing which to focus on? That is how it is for me between ALL sounds. Normally, the brain filters out the unimportant sounds to the background, but I experience it all on the same level. Even my own footsteps come in and interupt my own thoughts. Every single sound is very loud and prominent. A fork on a plate, even certain lights that hum, my own breathing, pretty much anything and everything.

    When my senses get too much for me, I scream, or retreat to an empty room and freeze up and feel I cannot move. This is a meltdown due to sensory overload. I also sometimes feel nauseous when things are loud such as a family dinner with alot of people talking, or a movie theatre. As a child I always was afraid of the movies, and still feel fear when I go. I used to tell myself “it’s just a movie”. I only recently realized it was sensory overload that caused this.

    The following video attempts to simulate what sensory overload feels like. The light isn’t like that for me, but colors definitely are very prominent and often distract me (I hate red, yellow and orange and love blue and some other colors). The sound in this video is EXACTLY how I experience it. When I first saw it, I thought “this is normal….right?”. I posted on a facebook group to ask others and people commented “nope, you’re autistic”. I’m still amazed that normally people don’t experience sound like this. I thought I was hearing things normally my whole life. I did know I was sensitive to sound, but thought “I’m just a musician”.

    This one is also a PERFECT example of how I hear sounds, especially while trying to listen to people speak during a dinner.

    I see colors in my mind whenever I hear sound. I see sound-waves, in 3 dimensions, with a color. When I walk into a room, I see all the objects in the room, and the shapes of them, and my mind tries to convert the shapes into sound. I know this is hard to grasp, it’s hard to explain and I want to keep things shorter here. But please know that while we are talking, I am experiencing ALOT of things at once. And even my thoughts are on multiple dimensions and connecting alot of dots. And all of these sounds, colors, etc, are all interrupting my own thoughts in my head. I have a constant stream of very fast-paced thoughts that sometimes NEED to be let out. I know how difficult it is for people to handle, but I can’t help it…

    Overall, the sensory overload isn’t only bad. I experience my senses more intensely and with more input than normal, but that also means that when I jump into a swimming pool, hear beautiful music, burn incense, etc, I am overwhelmed with euphoria! I am lucky to have sensory overload. It is a difficulty throughout my entire day, maintaining my body so it doesn’t get sweaty, avoiding sounds etc. But it makes me who I am. And things are very beautiful for me. I often cry from beauty and love for all things and people.

    Heightened intelligence

    My neurological assessment (a series of tests that were done on my brain), showed I have heightened intelligence in the music, mathematical, visual-spacial and language/verbal parts of my brain. They are functioning in the high range.

    The assessment showed that my left hemisphere of my brain is functioning at a higher level than the right, and even though one has a dominant hemisphere, this is very abnormal as they normally function in the same range. It also showed that my left and right brain struggle to communicate with one another.

    Lack of Empathy

    Emotional empathy is feeling what others feel. I experience little to none of this. If someone is crying, and I’m in a happy mood, I remain in the same mood and my mood does not change to adjust the other persons emotions.

    Cognitive empathy is intellectually putting yourself in one’s shoes. I can do this, but due to my lack of emotional empathy, it is impaired. On top of that, I do find that I am impaired intellectually as well, as I often feel immense emotional pain when trying. I can do it, but it’s painful, and sometimes just doesn’t work. I’ve been called stubborn due to this, but please understand, it is not a choice, in fact oftentimes, I am trying very, very hard to understand you.

    Black and White Thinking

    This is pretty self-explanatory.

    Fixated-Obsessive thinking

    I am always obssessive in my thoughts. Girls have often thought I was obsessed with them. I am not. It’s just the way I think. everything i think about, I think obsessively. I often pace for hours around the house without showering or doing the thing I need to do, due to these obsessive loops I am stuck in.

    With obsession comes passion, and I find it advantageous as I can sit for hours writing or making music etc. When I am focused on something like that, I am completely fixated and don’t even go to the bathroom or take a sip of water. It can be very difficult, but I am also able to do amazing things, and my fixation becomes dedication, so I am glad that I am this way and would not change it. That being said, it is of course very difficult to handle. Please do not tell me I am over-analyzing. I have more neurons in my brain.

    Fixed interests and Theory of Mind

    This video demonstrates both Theory of Mind and Fixed Interests pretty well.  My theory of mind, unlike the guy in this video’s, can be very good sometimes, but is often impaired, usually on the social plane, and can sometimes be exactly as he describes it, particularly with conversing with others.

    I can only talk about topics that I’m interested in. I’m quite obsessed about them, so even though they feel broad to me, there are only a few things I speak about. Usually those things are Spirituality, Music, The Lord of the Rings, and Games. Sometimes for even a few seconds of listening to another topic I feel emotional pain that is unbearable to me. I also talk about topics without realizing that others might not enjoy them. I can also get “locked on” in conversation on a certain fixed topic, such as The Lord of the Rings or music, and not stop talking about it. Please do interrupt me.

    If I am talking about something you don’t like, please tell me, as I am unaware of how you feel and often think the other person is loving the conversation. It is a horrible feeling to know that I sat for ages talking to you and you were uncomfortable. I’m sorry you felt that way. Please interrupt me and tell me. I don’t mind the honesty.

    Lack of an Emotional Ramp

    Usually a person might have a ramp of sorts in their emotions, that build up slowly over time. If you are at peace, you might be at 0 out of 10. If your phone cuts off during a call, you move up to a 1. Then your car won’t start, you’re at a 3. Eventually you get it started and hit traffic, you’re now at a 6. Eventually things build up and you’re at the point of exploding.

    With me, my emotional ramp is sort of like 0, 1, 2, – 8, 9, 10. ie: the numbers 3-7 aren’t there. I have some degrees of mild, but usually its extreme. As a result, I can swing into not just a bit of anger, but absolute rage. This often seems disproportionate to the reason I am angry ie someone not replying to a message. However, please understand that I am truly upset and it should not be played down just because I have no ramp. But what it does show is that I don’t just get a little upset, I get VERY upset. The good news is, I can also swing directly into peace and happiness very quickly. However, if I’m triggered into upset, I go deep down very quickly. Although I am not depressed, the anti-depressants I am on help me maintain my mood in the positive range. But please understand, if I get upset, I have to sit and deal with this ramp and these triggers, and it can take alot of energy for me to bring myself back down to calm. The small things that would tick me off, send me into overdrive, and I can have mental breakdowns, panic attacks, extreme sadness or despair, etc, i.e. all the range of emotions, just more extreme.

    Fixation with time and replies

    As much as my PDA makes me dislike structure, I still have one aspect of Autism’s fixated issues with time and appointments. I don’t mind if you’re late 5-10 minutes, but after that I begin to boil up and get very angry. I then have to resist thoughts and deal with my lack of emotional ramp. Also, when someone says “I’ll come over whenever” or “I’ll let you know”, I try and be chilled and say ok cool, but it is very hard for me. I eventually explode. If you really don’t know yet what time you can come, that’s OK, I will handle it, but please eventually do.

    When people don’t reply, due to usually being ignored and phased out, I immediately assume abandonment. But even when I know there is no abandonment happening, not replying to messages can be very very hard for me.

    I get fixated on questions that I have asked until they are answered. I even have questions from years ago from people who have blocked me. I have tried for years to let them go, but can’t. Letting things go is a very difficult thing for me. And sometimes my question might seem trivial, but I’d like to ask if you can please respond. Even if it’s to say “I’m very busy I’ll respond when I can”. Then at least I know you’re there and get some degree of control that calms me and makes it easier for me to resist having a meltdown.

    When people don’t reply for a week or more, I usually have a mental breakdown. I understand everyone is busy. I just wish people could understand how hard it is for me. Even a 1-sentence reply can ease me up and then I can give you more time and space.

    Pathological Demand Avoidance

    My version of Autism is atypical and is called Pathological Demand Avoidance (PDA). It is still being researched but is starting to be accepted into the Autistic spectrum.

    PDA has a few differences to typical high-functioning autism:

    – Unlike people with Aspergers/High-functioning Autism, who have a very fixed and rigid routine, PDA is the complete opposite: a complete inability to function in routine and structure of any kind. This includes resistance to authority as well.

    – People with PDA generally CAN read facial expressions and vocal tones well, and are much better at masking their symptoms. This is called social mimicking, which is learning various social rules and copying them. Because I am able to do this, it made it harder for my Autism to be picked up earlier on in life. Oftentimes though, the social mimicking is very mechanical, and not natural, and I can often observe someone doing something, then try apply it myself, but in an incorrect way or situation. A great analogy is if one learns a move in chess, and is successful, they might try the same move again in a different game, and find it doesn’t work. I often try so hard to apply a rule after someone has berated and shouted at me for making a mistake, then try fix it and adapt, only to find that I did something ELSE wrong, or was still incorrect. Please be gentle with me and don’t shout at me, tell me what I did wrong and please understand I am not disrespecting your boundaries, I am in fact trying VERY hard to understand and work with them, but everyone is so different and it is so hard.

    – PDA is characterized by an extreme resistance and avoidance to every day demands. These can range from full-on demands, to light suggestions (which feel like demands even if it’s done lightly), to even bodily demands, such as chores or hygiene. Luckily I hate feeling unclean, so I brush my teeth 4 times a day to get rid of taste after eating, and shower 8 times a day to get rid of sweat and heat. However, even though I adore showering, it sometimes takes me up to 2 hours to mentally break through the avoidance barriers and push myself into the shower. I often take hours to get ready, and even when I had a full time job, I would wake up as early as 5am and still arrive at work at 10am late because my mind would resist doing my morning routine. Every time I need to shower, eat, go to the toilet, even pick up an object, I have this resistance. Even with things I that feel good like showering. And you can imagine that the things that don’t feel good, are even harder. When giving me suggestions or demands, please be as light as possible, and if it is unnecessary, please refrain from doing so. I know it seems like I am stubborn or closed minded in reacting defensively, but it is pathological and part of my disorder.

    – PDA is an anxiety-based need to be in control. Ironically, if I feel I am in control, I am often lenient and chilled and able to give you space and reasonability. When I feel I am losing control, I can become controlling and pushy.

    Words people say

    The following is a list of things that are often said to me by others. If you know me, and especially if you fell out with me, you may relate to having said some of these things. The parts in bold is what is said. The parts next to it are my responses. 

    I’m not reading that – This is one of my biggest triggers. I have often written to explain things to people, and get the reply ‘I’m not reading that”. This usually triggers me into writing MORE in which case I dig myself a deeper hole. I also get told that I must respect peoples time and they just don’t have the time or energy to read. While I totally understand that, please understand that the amount of time it takes to read my message took the same amount of time to write it, in fact usually more, and even more energy as well. I feel I put in SO much effort to try convey something to you. I truly understand that it is difficult to read everything. But responding with “I’m not reading that” just makes it worse. I’d like from here on to make a rule that if I say “please read this”, I could possibly give you time to read, but be reassured that you will? I understand everyone is busy, but unfortunately, I can’t keep things short. I am trying so hard.

    You are selfish – This is the biggest thing people say to me and it is by far my worst trigger. As per everything you are about to read, I hope you can see just how much I am dealing with in interacting with you. I try VERY VERY hard to understand people, and I do feel a ton of care and love for people. I often feel I am trying so so hard to care for others, but I come across cold, etc. I feel that I am giving an immense amount of energy and effort for you, sometimes even just writing a message or conveying something can be incredibly difficult and tiring for me. When I am called selfish, I feel as if it is thrown in my face, not acknowledged or even noticed, and I just snap. In therapy, I am working on resisting those urges to swear and shout when I am triggered. But I’d like to ask you to please try not use this term, and to try and put yourself in my shoes, and understand that I do care, and I do try, and I do want to help, but sometimes, when I say no, I can’t, and sometimes, I am even doing a gesture that comes out the wrong way, as disrespectful of boundaries, or rude, or whatever other things are listed here. Please understand that I am trying. And that I care.

    You are self-absorbed / you act like the world revolves around you – As much as I do truly care, the term Autism comes from the Greek word autós (αὐτός, meaning “self”), and was originally disovered in patients who were withdrawn into themselves. I am self-absorbed, and I find it very hard to put myself in others shoes, etc. However, as per above, this does not mean I care.

    You are stubborn – I cannot change how I am in certain ways. I am not refusing to adjust for you, but trying to explain to you that I can’t. many of the things, like saying I love you, or being forward, are things that I tried for years, and spent years in depression while trying. Please respect that I cannot change various things about myself. I am not stubborn here. I have a mental disorder that I cannot change.

    You’re Exaggerating – I am not making a bigger deal out of things. I am not over-analyzing either. My brain, both emotionally and intellectually, has more neurons and I am truly feeling things way more deeply and magnified than you. Please take how I am feeling seriously, even if my reason for being upset seems small. I need calming down, or for it to be addressed, as you would an “important” problem.

    I gave you hints – I am often told this. I cannot pick up on hints at all. Please do not expect me to pick up on cues or hints. Please speak very very directly to me if you need space, or don’t like something I did. I have developed a thick skin due to people leaving me and berating me my whole life. It is the worst feeling ever, to be ignored. Even if it hurts, I would like your respect by being honest and upfront with me about what you need beforehand. And if I already have failed to see the cue or give you space when you didn’t even tell me to do so, please do not shout at me for something I couldn’t help.

    Oftentimes I have thought someone was busy when in fact they didn’t want to speak anymore. As a result, I waited on them for weeks, sometimes even months. Other times, I have confronted people and been told they were just busy or forgot to reply. In both circumstances, people have told me “people are just busy, don’t freak out” or “I didn’t want to speak to you, take a hint”. Please… if I am asking for a message to know where I stand with you, please give me the respect of writing back and letting me know. It can be super short if you’re going through a lot. But this is one of my biggest issues, and with the mental blindness I feel a lot of fear and uncertainty whenever someone doesn’t reply.

    You didn’t respect my space / boundary – I didn’t even understand the concept of space until last year at age 25. I only recently learnt what a boundary is, and I’m not sure I even fully grasp it yet. I am usually unaware that you even placed a boundary. And even when I am, it is immensely difficult to hold back.

    Oftentimes, people put their foot down and it feels like they are stifling me. It feels harsh, and sore. And I don’t understand why they are doing it. I’d appreciate if we could negotiate our boundaries, and my lack of boundaries, so that we can find a solution together. It often feels so one sided, and since I have this disorder, it is not so easy for me to just do what you say. I have needs too and I’d appreciate if we can work together to find a middle ground. Because it often feels like it is your way or the highway, and that in the past has pushed me to the point of swearing back at people for being cast aside and having my needs dismissed. On that note, many of you felt I was doing that to you. I wasn’t. I was trying to let you know that there are some needs I cannot meet, as I have difficulty doing so. Considering you never knew I had a disorder, you assumed I was being selfish. Please understand I was trying to communicate.

    You won’t compromise – instead of 50/50, I might have to meet you 30/70. For me, just giving one day of space takes all my effort to do so. I have to distract myself all day, turn off my phone, focus intensely on a computer game so that I don’t message you. Same goes for not saying I love you and many other things. In the past, if a girlfriend wanted me to be her date for a wedding, if I said no, I would be seen as uncompromising. Now, I hope she’d be able to understand that the sounds, and the social interactions, are so painful for me that I have nightmares about attending social events, and had nightmares for 3 weeks after my last wedding I attended. It is traumatic for me. I hope that now you can understand that I AM putting immense effort for you. I feel I try so so hard. Only to be told I won’t compromise for your needs. Most of all, I am trying, so very hard, putting in alot of effort.

    You’re rude/blunt – I have no social filter on my brain. I am often very forward, and often say things without knowing they are offensive. Moreover, many of the social rules, like manners, are very strange to me and I don’t understand them. Even when I do know I should say please or thank you, I often don’t want to because my demand avoidance kicks in. But most of the time, I truly forget. I even have to remind myself to say hello, shake someones hand when they put it out etc. As much as I am able to appear normal, sometimes I do forget. Please understand that, and try not to take it personally – if I’m upset with you, I will tell you. If I didn’t greet you, or said something very blunt, I am often unaware that it offended you. I even have sometimes told people they are closed minded to their face, and had them be angry at me and then I go home thinking what did I do? Only later a friend would point out to me that I was offensive. I am trying to learn, but it is very hard, so please understand and let me know if I offended you in as calm a manner as you can (I know it’s hard in the moment).

    You’re pushy / demanding – this is part of my PDA. Please understand that. I am working on this in therapy. Please understand that feeling unheard can bring me into that state. this is pathological and I can’t control it. What CAN be controlled, is having a balance between us, and it might have to start with you meeting me halfway, but once I’ve calmed down and feel in control, I can then try collaborate with you and give you more freedom and balance.

    You don’t know me, so how can you love me? – this is a strange question to me. Firstly, what does knowing someone mean? Collecting a series of facts until you feel you now know them? Secondly, why does one have to know someone to love them? And judging by the first point, can one ever truly know someone, and does love actually occur being felt at the same time as knowing a certain threshold of information about them? Love is not intellectual.

    I experience love the way people love animals. You don’t need to know them to love them. Most people see things through their egos, their guards. They wait until they know enough about a person to say “I can trust them now”, then they open up their hearts.

    Oneday, in meditation, I felt my heart open. Since then I have felt nothing but love for all people and things. It is unwavering, unconditional, and universal. I experience romantic feelings for some people, and each person differently, but usually when I say I love you, it is not romantic.

    I have tried to refrain from expressing “I love you” when people have asked. The result was that I eventually explode and cannot take it anymore. Usually my heart closes and I feel very lost and afraid. I suddenly can’t say it to even the people who are ok with it, and I feel afraid to even speak. It shuts me down completely.

    Many of you have had issues with me saying I love you. For those of you that have, please know that I cannot control it, and that it is a part of my symptoms. My lack of a filter on my brain makes it impossible for me to refrain from it without breaking down. What seems like my refusal to agree to your request to not say it, is not a refusal or disrespect, but an honest answer that I have tried for months at a time to refrain and I cannot do it. People have not reacted well to me saying “this is who I am” or “I’ve tried and I can’t”. I’ve tried to explain in long messages and get told “I’m not reading that”. Hopefully now, you may be able to understand that this is part of a condition and that I cannot control it.

    Acknowledgements

    I’d like to take this time to mention Dan Simpson, my best friend, who has been here with me through everything. I couldn’t have coped without you. I’d also like to give a special mention to Katie Mcgarry, a fellow Autistic from overseas, who helped me through so much when I was going through my 10 week neurological assessment; Radina Kolev, who spent months with me while I was undiagnosed, fighting for a diagnosis; and Josh Marcus, who was my friend and therapist. I’d also like to thank Matheus Da Nova, who before I knew about my disorder was there for me alot during hard times. Thank you for being a good friend. And lastly Jarred Selbst, also my best friend, who has been there for me for years. I’d also like to thank all the people I have lost, who did help me during hard times over the years and put up with my behaviour which I know was difficult to handle, even though I was misunderstood I still was tough to deal with and I understand that. You know who you are, all of you are in my heart. Thank you, truly.

    To my parents for their support, both financially and emotionally. I know until my diagnosis you also didn’t understand and we hurt each other alot. I am grateful every day for your turn-around and understanding and care. thank you.

    To my therapist Catherine, you know constantly I thank you for your work. Within a few months you have changed my life, and thank you for all your accomodation, understanding, flexibility, and hard work you’ve put in for me. Truly, thank you…

    To my psychiatrist, Dr Chundra, I think it speaks for itself that this diagnosis changed my life. Thank you for being objective and understanding, and for the correct diagnosis, and medication. You have also changed my life immensely, and I will always be grateful.

    To my other therapist, Margie, thank you for understanding me and working with me, and for being so incredible in your therapy. You have also helped me to overcome some of the most important issues in my life that were holding me back. Thank you.

    Conclusion

    Autism is a very painful yet beautiful existence. I am happy to have it, and very grateful to have the good things it brings. It is, that being said, a difficult life to handle, but a life that I believe allows me to do and create great things. My Music and writings on this website are a result of my Autism. My boundless experience of Universal Love for all people, as well as the inability to filter out my senses make everything so incredibly beautiful, even though it is filled with immense pain simultaneously. If you do not understand yet, don’t worry, hopefully the rest of this post will explain everything. I feel Autism is a gift, and often times the most painful parts has been the difficulties enforced by people for me to conform, live in their world when I clearly don’t live in the same plane of thought and emotion, and their misunderstanding and berating. With acceptance, therapy, meeting halfway, and freedom to be me, things have been improving, and I’m better than I’ve been in years. I know that I can have a great life, and I’m enjoying it alot now.

    My message to you is twofold. Firstly, I hope you can appreciate and understand my difficulties. To not push me to do things that are normal or expect me to do things that are normal. To not berate me, shout at me, blame me, ignore me, or abandon me due to these difficulties. I am trying very hard. I have spent my whole life being berated and all those other things. I hope now I will have some peace, love, care, understanding. Understanding is the most important thing of all.

    Autism is a very isolating and lonely disorder. It is also filled with alot of emotional abuse due to being pushed into situations with sensory overload, and social situations as well. Please be kind to me. Please reply to me. And please tell me how you feel, even if it’s blunt. Please don’t ignore me.

    My second part of my message is that Life is Beautiful. Everyone is so caught up in their social rules, in their beliefs, and in guarding themselves, that they do not take the chance to Love. Love does not hurt, attachment and other things cause hurt, but Love itself is open and free. I urge you to try open your heart emotionally. To try and see the beauty in people and in others. And to try and take time to not get caught up in your life and your problems (I would say “smell the roses” but the thought of that makes me feel sensory overload haha).

    I feel your social rules limit you. I think they make people so concerned with them that they forget to think about openness and love, and being human. I am glad that I am Autistic. I am trying to learn more about your world. Please try and respect that I live in a different one to you.

    Whoever you are, who is reading this, I LOVE YOU <3

    THANK YOU so much, truly, for reading.

       

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