Image above from the American TV detective series, Monk (https://www.imdb.com/title/tt0312172/).
Written version of video:
Hi everyone, this is Autism Toshiro Hitsugaya, or ASD Toshiro for short.
The subject I’ll be focusing on in this audio video is how unfair it is to get so close to finding a solution, only to have it snatched away. This section is about the unfairness of getting close to finding a solution to the lack of understanding from those around me, getting to know someone a little more, and my pain. I’ve been so close on each regard, only to have it snatched away by whatever means.
One of these moments was in 2013. It was actually during the wake of my late grandmother. A relative of mine came to visit, someone who doesn’t really know me, other than what my mother explained to him. He apparently worked helping people on the spectrum, but something rather odd happened when I met him. He has Tuberous Sclerosis, but something told me he has autism as well. Why? Well, from what my family told me, he had sustained injury during his birth and this can result in autism. I’ve found out through research that Tuberous Sclerosis has a risk of causing autism.
I found that he was the first person in my whole family, apart from my mother, who understood me. In fact, he understood me better in that short time than I ever expected him to. I was incredibly nervous about the wake and all the people around me, however; when this relative started to relate to what I was experiencing, I felt the icy hold of my anxiety start to slip. That is very unusual and never happens to me, certainly not without some time of getting to know them till I feel more comfortable.
Anyway, what I mean is that I wonder if he is also autistic as well. I don’t think his parents would agree, but I think he has.
What took me by total surprise was his confrontation with a relative of mine, who is around my age. A relative who has never understood me at all, no matter how many times I tried to explain it to her. This visiting relative counteracted this relative that has never understood me. It was epic, I wish you could have seen it. He was explaining about my autism and how it affects me. My other relative didn’t understand and kept going on about potential, her new favourite word. I was saying basically that there is a constant misconception about autism, people either think you have to be Kanner autistic or Einstein, but people like myself that fit between the two keep falling through the net. Which is what has happened with me. My distant relative agreed with me, but my other relative couldn’t think of a comeback, and just broke. It was so strange. It was like she was shattered before my eyes, broke into tears and stormed out of the house. I couldn’t believe it, someone was defending me from my hostile relative, and it was working.
Unfortunately, this relative had to move away again since he only came for a visit and lives far away. This, however; is a good proof that support from someone who’s autistic or very much like it, does exist, if you can find it. I felt exhilarated to see someone other than my mum fighting on my side, who could see the world and the people around me the way I did. It was so unusual as that never happens, certainly not to me. However; when he moved away again, I was back to square one. I found a solution, but it was unfairly taken away from me. This is a good proof of something I know will help me as it already has, if only briefly, but finding a permanent version is the difficulty I have.
Another experience I went through involves my Facebook friend. Well, I’ve already explained that one in a previous blog entry. Basically, she was starting to open up to me, towards the end of our friendship before everything turned sour because of her friendship with a bully of mine. I could notice her messages were starting to change, she started to open up to me about subjects she never talked to me before, like she began to trust me. I was so close to getting to the next stage of friendship, it felt like a door was beginning to open, like I was moving onto the next level in a video game, but it was cruelly snatched away from me. I couldn’t continue when she was accusing my autism for taking the bullying I’ve been through too seriously. It’s like the game crashed and I lost the saved game I worked so hard on, leaving me having to start from scratch, and I lost the game itself so I’ve had to find a replacement, >.<;.
Not only that, but I was inspired recently by a suggestion that sounded hopeful, it gave me an adrenaline rush, I felt this power I’ve never experienced before. I felt this intense energy burst, like I had a goal that was reachable and I needed to do whatever I could to make sure I could succeed. I felt so much strength and drive that gave me a boost. I was determined to get a task done, I was working hard at it. That’s when all of a sudden, I’m told, that they couldn’t fulfil that suggestion. I felt like I just received a 1000-ton weight on top of me, I just sank. I dropped down lower into depression than I was before. I was so hopeful, thinking that at last something really good would happen and I wanted to make an effort until I realized, “No, of course not, you’re fooling yourself to ever think you were going to succeed! You’ve got no hope! There’s no point anymore, everything just keeps crashing! One minute it’s there, and you know it would help, the next minute it’s all taken away from you.”
You know, as I’m experiencing these answers that come ever so close, but are taken away, I feel, is there someone up there playing tricks on me, giving me a taster of what will help, yet denying me the right to a permanent answer. I know what will help me, I’ve witnessed it myself, but getting a permanent solution it’s like reaching for the stars. You climb a mountain to get closer, you see it clearer, it’s brighter, but it’s leagues away. You can’t get there as it’s just too far out of reach. You can climb a mountain, but you need a spaceship in order to make the distance.
It’s cruel to face that answer and have it nabbed away before you’ve had the chance to feel it’s full effect. It really does feel like someone toying with me, messing me around, getting some kind of enjoyment out of watching me suffer. Why is it that the answer is too far out of reach? Why? Why can’t it permanent? Why can’t I find an answer that lasts? I need to find the answer to my goal, and I’ve been searching for so long, and I’ve faced trauma along the way. How much more do I have to endure until I find a permanent solution?
Anyway, that’s it for now, I wish it didn’t have to be ‘it’, I still need to find an answer. ‘That’s it for now’ is a poor choice of words, I guess I should say, “this is the end of the audio video or written blog, but the continuation to find answers, at least I hope I’m successful”. “I can only hope that some miracle will come down and make life feel worth living” my inner heart is telling me, …… “As if that’s ever going to happen. You’d have a better chance winning the lottery!” my critical inner mind tells me, -_-. The battleground between mind and heart. See what I mean? Inner turmoil, which isn’t helped if I’m treated badly by others as explained in my previous blog entry, ‘Abuse from ASD Forum’, :(. It fuels the feelings of worthlessness, like I don’t belong on this planet, like I was never meant to be born.
Well, thank you for listening or reading, :).
Written version of video:
Hi everyone, this is Autism Toshiro Hitsugaya, or ASD Toshiro for short.
The subject I’ll be focusing on in this audio video is the abuse I’ve received from ASD online forums. Now, this is something I feel very strongly and angry about, and is evil targeting the most vulnerable through total lack of understanding and care. I wrote on forums in the past, and I’ve been hurt by them. In the private messages in a UK forum, I was told I was ‘childish’ because of my triggers involving an educational environment.
On one worldwide ASD forum, I can remember being told that the others on the forum were in a better position than myself. So, basically, trying to write on the forum, I’m not going to find others that can understand where I’m coming from? So, it’s hopeless? After that comment, I thought, what’s the point?
On another worldwide ASD forum, I wanted my mother to write on my behalf to try to find someone willing to write to me. I kept an eye on the responses until I saw very hurtful ones. They started to abuse my mother across the internet! So, no one is safe from the onslaught then, huh? I went onto the forum, and made my own response, and although it seemed to ease up a little, all of a sudden, a couple of people were accusing my mother saying that my writing was from her, imitating myself, >.<;. I felt very angry at that, I couldn’t sit by and watch her suffer at the hands of those brutal responses, I put my heart and soul into the lengthy response I made that spun 5 pages across Microsoft Word. I worked so hard on that, and they accuse me of being ‘fake’, of being a ‘troll’. To be insulted so badly by the autistic community on a forum, from being called ‘childish’, to being told I’m fake, like I don’t even exist. Like I didn’t get that type of treatment from school. It’s responses and moments like this when I wonder why I even bother writing on the internet at all, >:(. It makes me very angry. I try my best, I put everything I can into my writing and still no one understands nor cares, and on top of that, abuse me. Autistic people on a forum, a forum that is supposed to be ‘supportive’, abuse other autistics, it’s a joke. Only a sick one.
They were even implying that my mother needed to seek psychiatric help for helping me to find someone to write to from the forum. I was abused in private messages on an ASD forum before by a man in his 40’s calling me ‘childish’ due to my triggers involving an educational environment. I didn’t want to have to face that again, so I needed my mother for support, but instead they chose to accuse her!
It hurt me so badly to see them treat us both that way, it drove me near to the edge. It cut me so deeply to be abused by people I thought would understand where I’m coming from. That abuse, how evil can they be?!? This is coming from the autistic community? I don’t understand it. How can another autistic person abuse another? There’s something clearly wrong with this picture. They’re pinning autistic people against each other. It’s evil and abhorrent.
In fact, my response to that abuse, was the following:
‘I put my heart and soul out there, and I am constantly abused. To say that I am my mother, you have no idea how hurtful your words are, :(. I have put so much effort into writing online, and to face that type of abuse is abhorrent. I feel ashamed to think that there are those on the spectrum that enjoy to see another suffer because of their trauma and accusing them as if they don’t exist.
You nearly gave me a heart attack with that response. That was so hurtful, :(. My heart is beating nine to the dozen.
I’ve had enough of that from my school life, I don’t need that type of abuse now in my present circumstances, especially from the autistic community. This is exactly why I find it so difficult to write on the internet, to face abuse like this is sickening. I don’t understand how an autistic person can say such abusive comments to another. It’s absolutely beyond me.
I’m already feeling uneasy about writing on here, particularly facing abuse like that. I have PTSD, do you honestly think I need to hear comments like those ?!? I feel so, so angry right now. I feel like my soul is reaching out of my body and rising above my head, :(.
It is only my mother and I, she already told you our family was unlawfully and wrongly split apart. My mother is the only one that I can turn to in my family and trust. I live with my mother not my father, and soon after he found out I was on the spectrum, he didn’t come to see me anymore. I tried to send him a letter and a Christmas card I had made from my photographs, but he had moved without telling me his new address. He died a year or two later, and we only found out from one the relatives, and they told us he never received my letter or card. My sister ran away when I was 7 years old, not from my mother, but my father.’
It’s times like these I wonder why I even bother. What is the point when all I receive is hurtful responses that take no consideration to what I’ve written? I did the best I could. I put everything I can into what I write, but maybe that’s it, maybe putting my heart on the line leaves me vulnerable. I can’t help it; I need to be able to get across my feelings because otherwise how else would I be able to find people who’d want to write to me. Surely I have to be myself, no?
I wanted my mother to begin writing on the forum on my behalf because of the shear abuse I received before, but I wasn’t going stand by and watch as my mother was being abused across the internet before my eyes. How can they do that? It hurts me so much to cause us more suffering than we already have. What gives them the right to hurt us this way?!? Should I even continue, is there any point? Am I going to keep receiving that kind of abuse across the internet? I can’t take much more of this; it cuts me so deeply. I wish people knew and cared about the pain these people online are causing, or do they even care? I have to find someone willing to write to me, but do I have to be abused along the way? Why are they doing this to my mum and I? My mum is the only person I can trust to help me, and when she tries, she faces abuse as well! If you abuse my mother, you also abuse me as well since she is my support. How can it be right to abuse a mother trying to help support a son on the spectrum by helping me to find someone to write to? I’ve been on forums before, and I didn’t want to face that abuse again, but I didn’t realise they would turn that hostile towards my mother. They were like a pack of wolves striking upon anyone that was vulnerable, and my mother and I were prime targets!
What did they honestly think abuse like that would do to a person affected by ASD and PTSD?!? Do they want me to feel worthless, like life is hopeless, like I don’t have a hope in this hell of a life? Do they want to see me suffer? Do they want me to sink into deeper levels of depression? Do they enjoy torturing my mother and I? Do they get some sick pleasure out of it?
I still can’t get those hurtful words out of my mind, :(.
What gives them the right to treat us that way?
I’m sorry for that outburst, :(, but it just enrages me so much that there are those on the spectrum on forums out there that can cause so much abuse to others on the spectrum in vulnerable situations. I don’t see how I’m going to be writing on a forum, not when I receive that abuse, but where can I go? The internet is the only way I can cope with to socialise, and I’ve been hurt many times by it, is there nowhere that’s safe for someone struggling to socialise on the spectrum like me?
My whole sleeping pattern has gone upside-down again all due to that abuse. Meltdown during the night, went to sleep about midday, the following day, and got up the day after around 4:00am. I’ve at least skipped a day. It took me a while to get back into sync in order to get this done. You should have seen the meltdown that ensued after those evil comments. It felt like they couldn’t have cared less if I lived or died! Bullying at school is one thing, but from the autistic community on a supportive forum, what the hell is going on in this world?!?
Anyway, that’s it for now and thank you for listening or reading, :).
Written version of video:
Hi everyone, this is Autism Toshiro Hitsugaya, or ASD Toshiro for short.
The subject I’ll be focusing on in this audio video is possible causes of meltdowns. What has been annoying me for a while now is that I’ve more often seen on the internet the results of a meltdown, but I haven’t seen a focus on the possible causes. I can only relate from my own experiences, but my meltdowns are very meaningful. I do not go into meltdown mode for no reason whatsoever. They are not brought on by a whim, they are triggered. I do have reasons. These reasons come under some very real concerns of mine.
Now, when you think about it, we all have boiling points. Moments where we have reached our limit and enough is enough. It doesn’t matter if you’re on the spectrum or not, we all feel pressure, stress and frustration. Well, I feel that when you are on the spectrum that threshold is a lot lower, therefore we can get to our boiling point much more sooner. When you add PTSD into the autistic mix, you have a very powerful force. Why? Because PTSD involves trauma, and a reaction to triggers can bring back painful memories. Can you imagine the impact that has on my boiling point? PTSD involves pain, traumatic pain. In that respect, the idea that people on the spectrum show no emotion is proven to be absolutely false. Now, not only do I understand pain from my own experiences, upset and angry when I’m hurt, I feel lonely, but when it comes to meltdowns, what are they? They are huge emotional bursts of energy. That’s right, emotional bursts of energy. So, you can say that when you’re on the spectrum, you feel much more vividly. The emotions you get are much stronger. The reactions you have from the experiences you face are a lot more meaningful. In fact, when you’ve gone through trauma, it is a heck of a lot more meaningful.
But why do meltdowns happen?
Well, in my case it can be because of many reasons. One is when I have been badly hurt by an incident that happened to me, in whatever form. It can come from reacting to a trigger I’ve witnessed that brings back the painful memories of my past, and equally reminds me of my current predicament. I’ve also notice I have other triggers as well, the difficulties I have with travelling, especially to Japan and China spring to mind. Another cause of my meltdowns can come from noticing a clear distinction between my own abilities and those of my peer group. I can also find myself experiencing meltdowns because of a lack of understanding by those I’m interacting with or could effect me in some way, shape or form. From losing a good friend, causing me immense pain.
They are just some of the examples, and what do they all have in common? They are all tied to very real afflictions. They are all very painful and difficult to cope with. They are also beyond my control. I cannot prevent my meltdowns if they are tied to experiences like the ones I’ve mentioned because they are all connected to feelings, and they are all painful. The greater the pain, the greater the meltdown. When you look at it that way, meltdowns are the physical ways our bodies are telling ourselves and others just how upset we feel. We want both ourselves and others to know just how painful it really is. We want to find answers to rectify the pains we are going through, and not just to ignore them, hoping the meltdowns will just go away. Meltdowns are warnings of how upset we feel. I feel, you shouldn’t ignore the reasons for a meltdown and simply find ways to control them. Think about why these meltdowns are happening. The autistic person must be suffering from anything from loud noisy environments to the social difficulties they are facing in the outside world.
The cause of meltdowns needs to be dealt with for the meltdowns to decrease in both severity and quantity. For the autistic person to be in a safe, caring, and understanding environment where they are able to fulfil their dreams and live a satisfying life, that is when I feel their meltdowns may be practically non-existent, at least that is my belief.
That’s it for now and thank you for listening or reading, :).
This is my comment under the blog post ‘‘The cheese stands alone’ ~ (an #actuallyautistic paradox)’ by
I understand where you’re coming from. You, the cheese in the middle totally alone, with everyone joining hands around you. The alienation, seeing those around you joining hands, friends with one another, when you are totally alone in the centre. I can relate to that.
The cheese stands alone. I mean, the song in itself emphasises the alienation and isolation you’d feel at school. It’s no wonder I represent school as a prison, when the schools promote songs and actions like this. Not to mention the intensity of the sound of clapping reverberating through your senses, initiating overload.
To create a song that would end in isolating a child from the others, I couldn’t see how the teachers wouldn’t understand that, they should see children day in and day out. Surely in all that time they must have some inclination as to the harm they cause. For the teachers to agree with the other children, yes, I often wondered the same thing. To be honest, I really wouldn’t put it passed them. I can remember a time when I was 10 years old, stood up in front of the class and was humiliated by the teacher. In the same year, my mother went into the school and confronted the teacher. She told my mother that she would like to all of us children hung up on gibbets. To want us children to be tortured, hung on gibbets. What kind of a teacher would say such a thing? If she was allowed to become a teacher of children, it just goes to show you the standard on our educational system in the UK, and I wouldn’t be surprised if it’s the same for you in America. It reminds me of Pink Floyd’s song, Another Brick in the Wall, because with teachers like these, it’s not surprising.
Personally, considering the words of that teacher I mentioned about the hanging on gibbets, and the song and actions you’ve just written about, I wonder whether it’s a twisted way of guiding the kids to single each other out, to target one another. It sounds like this is what these ‘schools’ want us to become. To cut each other from empathy and understanding, and instead gang up on one another. In that respect, sounds like social reconstruction, manipulating and controlling the future generations to become uncaring and unfeeling.
I can remember similar activities such as duck duck go, you had to run around the outside of a circle and pick another person who then had to run around and tag someone else. In that respect, I didn’t even understand the concept, >.<;.
The intensity of the noise and the whole experience, yes, I completely understand. I myself faced some extremely annoying bullies that deliberately struck my sensory issues, before I even knew I was affected by it. Two of my bullies would shout these noises into my ears, and another would brush his hand over my hair. They made me sick, I was so infuriated with them, but of course, no matter how many times I told them to, “Get lost!”, they never did. They just enjoyed every minute of it, with arrogant grins strapped across their faces.
I understand what you mean about finding it difficult to fit in, and how it takes its toll on you. I could say the same. ‘To stay on your toes’, yes, I understand what you mean, and that’s what concerns me as well. The idea that I’d always have to keep trying to ‘be like them’ just to feel that I need to ‘fit in’. Personally, I want to find a way so that I don’t have to act differently, that I can be myself. I feel that you can’t truly feel comfortable in social interaction until you’re able to be yourself.
When it comes to politicians, the problem is that they are puppets, being controlled by darker forces above them. These puppets perform the tasks set to them by these puppeteers, the elites. These elites dictate what happens to us all. They’re actions affect us all. For example, they are targeting the vulnerable and disabled in this country so badly, meanwhile the elite profiteer off of our suffering. This does affect me because I know that I am misunderstood by this country and they won’t understand the invisible conditions I’m affected by. You cannot see the traumas and memory triggers I’ve been through on the surface, not unless I experience a meltdown, but if I do in public, they’d consider me to be hostile and may even arrest me. Why? It’s because this country doesn’t understand autism or the traumas we go through in life. Your experiences, like this Farmer in the Dell song, can be a trigger and remind you of the traumas of school life. For example, every time you are reminded of it, it just brings it all flooding back, and it’s like a switch is triggered inside of you and you snap. This is what I mean, -_-.
I understand what you mean about not wanting to interact with the ‘wrong people’, in other words, people that don’t understand where you’re coming from. I understand why you prefer to be alone. When you’d feel like you have to ‘fit in’ with all the going trends, you just want to pursue your own interests. However; as you’ve said, feeling alone would be lonely. This is why I have so much depression, I do feel so alone and that in turn makes me feel lonely. I don’t wish to cut myself off from others, I just wish to find the right people, but I just feel like I’m searching and searching forever. I saw a YouTube video recently, about someone saying the same words I feel myself. They were saying that they found it difficult to initiate conversation, and try to wait for someone to come to them to talk. As soon as I heard that it was like I was listening to my own words. This is the problem. I fear that the harder I find it to initiate conversation, the more detached I’d be from finding the right person, but I just find it so difficult, especially when I have no idea I would be welcomed and understood or not, >.<;.
Personally, I feel too alone, I don’t wish to be alone. I equally don’t want to write or talk to people that don’t understand where I’m coming from. The trouble is how do I know if someone truly understands or doesn’t if they are not being totally honest with me. Like my old Facebook friend, how was I to know that after she told me that she didn’t judge others on their disabilities that she would later come to blame my autism for taking the bullying I went through too seriously. These instances hurt me, but they only lead me to a greater emptiness inside. I wish to fill this emptiness, and I know the only way I can succeed is by finding a connection to someone that falls under the characteristics that I value. The understanding and acceptance of each other’s differences and difficulties and allowing us both to be ourselves around each other. These are important qualities to me, and what I need to find in another.
You make some very interesting points in this post, it’s an interesting perspective to read these experiences from school life and the affects they have. School can leave a long lasting scar, I’m very much scarred myself, so I can relate to how these alienation experiences can affect us.
I wish I had the conviction and resilience I get the impression of from your writing, you sound very strong, :).
This is from an older blog of mine which I’ve rejuvenated onto my WordPress blog.
My attempt at poetry on my older blog:
The ghost of the past
The ghost of the present
Where could the ghost of the future be?
How could I find where my future leads me?
Should I read the patterns of the battleground around?
But how could I tell what I would have found?
Could it be the truth or a lie?
Half the time, I believe that the chances are if it were the truth, that ‘pigs might fly’, >.<;
Still, despite it all, I shall not give up until my last breath
For I feel if I do not make a stand, I would be left depressed
I have lived with depression for many a year
The fact that if it may continue has been my fear
Would I be able to find a way out of this trap?
Or will I need to be guided by a map?
Where could this map be to guide me?
All I wish to do is find my way in life, to be free
Free from the lack of understanding
Though I sense from certain people, that all I’ll find is an attitude that is condescending, -_-
Is there such a thing as a perfect life?
Or are we all at of the edge of a knife?
This knife that could penetrate our will
That would only lead us downhill
Life can be cruel, in more ways than one
But can I find a way to have finally won?