‘faking’ and ’tricking’ your mind

[‘faking’ and ’tricking’ your mind]

Hi LiveLine and Mihaela

 

Thank you very much for your responses, , and I apologise that it’s been such a long time since I’ve responded to your replies, , I’ve not been on the ASD forum for a long while now, I’ve been busy trying to set up a new blog (https://livingwithasandspd.wordpress.com/) and Twitter account (https://twitter.com/toshiroh9). I’m not all that fond of Twitter as I find it very difficult to condense my writing into tiny little sentences with abbreviations, which is why I’m using my blog to channel my larger pieces of writing alongside.

 

Self delusion, yes, this is a very interesting subject. The idea to ‘mask’ yourself to ‘fit in’, trying to be ‘normal’, ‘mimic’ neurotypicals. I have never understood any of those quotes, and I’ve never wanted to live by them. I am true to myself, I stay true to my values and principles. If my autism isn’t understood by those I’d be supposed to be ‘mimicking’, I wouldn’t want to be associated with them. What good is hypocritical people that say one thing one minute, and completely backtrack on every word they’ve spoken the next.

 

In fact, it takes me back to my first ever forum thread on this forum, My Battleground Puzzle Mind. At the time I was friends with a neurotypical, writing to her on Facebook at the suggestion of my mother’s, a friend that I spoke very briefly to towards the end of primary school. I was in denial of the fact that she was friends with a bully of mine, a bully connected to an emotional bullying incident that cut me very deeply at my young and impressionable age. I saw her posting on Facebook about going on a trip with this bully and her brother. What I meant in the beginning of my forum thread was my mind and heart conflicting with each other in knowing what to do about the idea that my friend and this bully were friends. Since that time, for months, I put the idea to the back of my mind. That was a bad idea, but then I had no choice. I was alone, and I still am in many ways. I had to hold onto that friendship because what else could I do? I just began explaining to her the bullying I went through and how it affected me. She told me that bullies grow out of bullying, but I was expressing to her that it isn’t always the case, after all what about criminals and MPs? Do they care about people, or the damage they are causing to many people’s lives? No. However; I could tell that she couldn’t understand what I meant, -_-. Basically, it was earlier the following year that I found a following message on Facebook that my bully cooked my friend a meal. To me, this had many inclinations, and I just snapped. I felt this immeasurable intensity build up inside of me, much like the pinnacle of my breakdown at school. I needed to tell her about my bully, but I was so emotionally charged, I pinned the blame all on that one bully, when I reflected later, he wasn’t the only one in that class involved in that emotional bullying. Looking back on that class, I can reflect a lot was due to the fact that I switched classes to the last one in primary school. Someone I briefly spoke to from my class later on told me that she knew I was bullied, and she only saw me in that class for two years. How could she have known? The class must have been told before I switched classes that I was being bullied, which must have been the reason why I was so badly emotionally bullied on that very last primary school year. It left me with a scar, and a scar that lingered, off-shooting into additional emotional traumas.

 

Anyway, to get back onto the message that I sent my friend, I never received a response from her, instead she wrote to my mother and she was blaming my autism for taking it too seriously. I was shocked and taken aback by those words. She told me in her previous messages that she didn’t judge people on their disabilities, so what was she doing accusing my autism? Talk about betrayal. Since that time she never wrote to me again.

 

Our friendship spun one whole year, and ironically it was snowing at it’s entry and its departure. The gentle flurry becoming ice cold landing into my soul.

 

These are the types of people we should be ‘masking’ ourselves to ‘fit in’ with, trying to be like them, to ‘mimic’ these neurotypicals? You cannot be sure who is genuine and who isn’t and when you find that people are outright hypocrites, it can take us a very long time to even work that out. Too long as far as I’m concerned, -_-. Why try to ‘fit in’ with people that are deluding themselves into thinking the world is a bed of roses, when evidence has proven the contrary? Delusion can only lead to destruction in the long term. You can ignore an issue for only so long before it comes back to bite you where it causes the most severe damage. Be that in terms of social interaction or the country and worldwide issues.

 

At the loss of her friendship, I felt this sudden heart-wrenching pain inside of me, it was greater than the meltdown I experienced the first time I found out she was friends with my bully. I went through a much more intensive meltdown. This was because I was trying to hold myself, trying to explain my experiences to this friend in an attempt to try to show her the power of my bullies actions on me were. She couldn’t understand any of it, and the subject of emotional pain, especially when I found it so difficult to open up about at the time, telling a female friend felt like social suicide to me, -_-. This was all because I tried to control myself and express parts of what happened to me to my friend, but no matter how hard I tried, she still blamed my autism.

 

Self delusion didn’t help me with my Facebook friend, it only led me into further destruction. I want to find more like-minded people, not try to meld my mind to ‘fit in’ with others. I am not ashamed of my values and principles, I wish to pursue them and find others that feel the same.

 

There is a lot to be said on this subject but there is a very simple solution, always be honest with yourself, it doesn't matter about the reason keep to the truth you know yourself better you understand whats important theres nothing to confuse the mind and don't be swayed by anyone who tries to tell you different.

 

Yes, I agree, I’m always aiming to be true to myself, even at the expense of losing that friend on Facebook. It took me a whole year to work out that she wasn’t true to herself, even her messages to me at that point completely changed. It was like I was talking to a completely different person. The truth is, and I’ve said this before in several places, is that too many people are wearing ‘masks’, when what lies beneath is something far more sinister. This is what has caused me so much trouble in the social world. What lies beneath each ‘mask’? Who truly cares, who truly understands, who would truly be interested in writing to me? These are all fundamental questions that I’ve tried so hard to find the answers to, and why should I have to spend so many years just to work out a simple fact? True or false, which is it?

This is what takes me right back to my emotional pain when I was 13. After I was bullied in primary school, when I was 10, I was called a ‘creep’. It hit me like a sledgehammer, and I died inside the moment that word was uttered. I couldn’t talk about it for many years, but the moment I turned 13, something totally unexpected happened. I was confronted by three females, one of whom told me one of them liked me. After that emotional bullying, I was going through so much pain, I didn’t know truth from fiction. I couldn’t tell if these females were teasing me or were genuine. l just dismissed them politely. I thought it was all a dream, and that it never happened. That was until I was cursed two more times later as I came into contact with the female that liked me on two separate occasions. Both of which surrounded immense anxiety and I couldn’t go up to her, nor express my thoughts as my anxiety was through the roof. The reasons why I look back and consider that she may have liked me is her reaction on those two occasions. The first time she was shocked to see me and made a mistake in her bank clerking job. The second time she was sitting a long way from me, and she was waving at me, smiling, whilst I had my back to her. I didn’t even notice her until I turned around.

True or false, how could I have known? How could I have known after I was emotionally bullied that someone truly liked me? I was bullied so much, I never even thought anything like that could ever happen to me. It did, but I totally missed it, and it has never left me. I used to constantly say, “You’re an idiot!”, every time I’m worried about emotional issues. Not to mention, I have immensely painful triggers on the subject of emotional feelings.

About confusing the mind, I’ve become all too aware that there are organisations running in this country and abroad that are doing just that, confusing the mind, sending out misinformation, confusing hypnotic language, not to mention the sheer amount of trolls across the social networking websites all designed to sway our thoughts and values.

 

The perfect response LL, and it's so easy too.

If we're not honest with ourselves, we are betraying ourselves and falling short of our human potential. And let's not forget that it's not only Aspies who fake it. NT's do it in a much more ambitious way, and NT society as a whole is built upon dishonesty - one reason why it's perpetually struggling with its own demons.

 

Mihaela, you’re absolutely right. Unfortunately, there are too many people out there that believe that they have to ‘fit in’, yet you should know within yourself what is right and wrong, and not be influenced by the mass media culture, in whatever it’s forms. It doesn’t matter what the latest trend is, if it involves something that stands against what you know deep down is common sense and what is right. Allowing them to alter your thoughts and feelings turns you into a robotic zombie without a thought of your own. I do not wish to be a sheep led by shepherds, rather the outsider who knows that delving into the herd will lose your own identity. To the mass media and trends, not to mention the elite in general, see us all as numbers, purely statistics, rather than a human being with a voice. Be a voice, show people that you’re not a zombie, at least that is my aim. To prove that I am true to myself, to prove that I don’t live my life through falseness. I do not wish to conform to the status quo, I know I need to question it, analyse it, and work out what is truly going on.

[Social groups around Bracknell]

Hi nellie

 

Thank you for your message, , and sorry for the delay in replying, .

 

I had a feeling you'd recommend those.

 

So, from what I've seen from the choices, I could either go to the Three Frogs Club in Wokingham or a few places in either Reading or Windsor. The best they have to offer in Bracknell is trampolining, and that sounds more suitable for children. I'm looking for groups for adults, not children, I'm in my early 20s after all, .

 

Whatever the case, I'll see how it goes, none of them will be that easy to get to, but it's worth a try I suppose, .

 

Thanks again, .

 

Ichigo

[Social groups around Bracknell]

Hi everyone,

 

I have been on the lookout for a type of social group for those with high functioning asperger's syndrome/autism around my area. I have difficulty with transport as I don't drive and neither does my mother. I live in Bracknell, so I wondered if anyone has any suggestions as to where I could go?

[Anyone on here that likes the Final Fantasy video game series?]

Hi Lynne

 

Thank you for your reply, .

 

We wasn't sure whether sitting in the middle, in the arena, might have caused us to simply see other people's heads rather than the orchestra itself, . We were at the front row and at the end of the row as well so I didn't need to sit next to a stranger, . You just needed good eyes to see from that far away, . The visuals on the screen were perfect though and really suited the music well, .

 

Yeah, my mum has always been there to support me one way or another however she can. Although, because she has anxieties herself, it can be just as hard for her sometimes, but we try our best preparing ourselves in any way we can in advance. I printed off floor plans for the Royal Albert Hall, and also of the roads around the area. I even found an interactive view of the concert hall itself and tried to find where we would be sitting. We prepare ourselves to give us as little stress as possible. What scares us the most is the volume of people, unfamiliar environments, getting there and coming back, things like that. She found it just as hard to cope as I did sometimes, but we try our best to hold each other up, as we only have each other at the end of the day. I have a couple of friends, but unfortunately one of them couldn't come to the Royal Albert Hall as she was working on the same day as a hairdresser, and she had clients booked for that evening, . My other friend is new, so I wasn't sure how it would have looked if I asked her if she would like to go, plus I only had three tickets and I was worried how my new friend would take that, she probably would have wanted someone else with her, so in the end we ended up going alone, with an empty seat, . It's a shame, I really wanted to be able to share that experience with someone else, other than my mum of course, .

 

My mum really liked the singing of Answers for Final Fantasy XIV (14th) by Susan Calloway, and I also thought she sang well as well. Although, I knew Eyes on Me better because I grew up playing Final Fantasy VIII (8th), and I knew that the woman that sang that song, Crystal Kay, also originally sang the third ending theme for Fullmetal Alchemist, an animé (Japanese animation), so for me, it was like connecting the game and animé world with that song, . Especially since Fullmetal Alchemist was the first animé that I watched when I questioned what it was, and so researched into it further online. Anyway, I didn't expect them to play at least one song from each game, that was great because I haven't been able to complete all the games, . Still, I'll be trying my best to get tickets for the next one when or if it comes back again, and confirm with my friends ahead of schedule.

 

Best wishes

Ichigo

[Anyone on here that likes the Final Fantasy video game series?]

Hi Sa Skimrande

 

Thank you for your reply, .

 

Well, Final Fantasy XII (or 12th), was the last Final Fantasy game on the PS2, the XIII (or 13th) is on the PS3. As for understanding it, it is basically a story based game that you can get lost in. It's just it doesn't necessarily explain the story straight away, you just have to adapt to the virtual world and in time you begin to understand the story. In other words, you play the game, pick up on the story as it flows and become familiar with the characters, storyline, music, graphics, etc. and before you know it, you've been playing the game for hours on end, . Anyway, it's a type of game I play to lose myself in, drown out the world around me, and fixate on the screen in front of me. It's a great way to drown out horrible experiences around you, as I did from horrible school memories, .

 

I liked Final Fantasy - The Spirits Within as well, . It's more of a sci-fi film than a fantasy though, but that's not a bad thing, . There is another film of Final Fantasy called Final Fantasy VII (7th): Advent Children, but to understand that you'd have to complete Final Fantasy VII because it takes off from where Final Fantasy VII left off. There's fantastic visuals in both films, and I like them both, although technically I haven't finished Final Fantasy VII either, but I know of the characters, and some of the story, .

 

Yeah, I see what you mean about Rez, though to be honest, I don't think I've ever played it, or the other games you've mentioned, sorry, . I've seen games that look similar though that I've played online though, but they are more like the classic arcade plane shooting games. As for Medal of Honour, I'm not keen on first person shooter games as I prefer games with storyline where I can just escape from reality into a world of my own, the virtual fantasy world, . I have tried playing first person shooters once, but I got bored with them quickly. The only games I really play that is in first person, are games that are fantasy based, like Skyrim. It's a big expansive world, with a lot of story, graphics, you can freely explore the map and caves, and choose whose side you wish to be on with a bit of politics making you decide whose side is more just. As for Special weapons over Normandy and Jedi Fighter, well, I've tried flying games in the past but I find it difficult to work the controls, and it's hard to not crash, . Oh and by the way, I am also stuck on games as well, especially Final Fantasy IX (9th), as I hate time limits and it caused me to get stuck and I was lost in a maze like scene in a castle, . I'm not sure what Haven - Call of the King is like, it looks fantasy based, I might look into that further and see what it's like, thanks for telling me, .

 

I tend to prefer the Japanese style games like Final Fantasy, Dynasty Warriors, Samurai Warriors, Ace Attorney, Okami, animé (Japanese animation) games, that sort of thing. I do like RPG (Role-Playing Games), point and click, strategy and games like that in general though.

 

Best wishes

Ichigo

[Anyone on here that likes the Final Fantasy video game series?]

Hi Lynden

 

Thank you for your reply, .

 

I know, I went to the Distant Worlds 25th Anniversary concert at the Albert Hall as well. I had to go with my mum of course as it would have been far too stressful on my own, not that it wasn't anyway, but I was looking forward to it all year, and I never expected it to be a celebration event, . That was a good surprise, . We had to take a taxi all the way to the Royal Albert Hall from where we live and then took us back home again when it finished. It was a lot of money but we couldn't do it any other way, it's extremely difficult for us to travel, . Anyway, I enjoyed the whole experience, apart from the crowds and such, . I liked all the songs, but especially the songs I could remember the most and grew up with as I have a connection to them. I just wish I could learn to play the keyboard so that I could practice a few of them, -_-. Ah well, I'm glad I went, though I missed the event last year, , still, it was brilliant, and I even got a t-shirt, , although, with the busy crowds and such, I missed out on getting the program booklet as I felt I didn't have enough of a chance to speak out to mum about it, the merchandise stand was such a small area for all of us buying them, and it was getting difficult to cope at that point, .

 

Mum has anxieties as well, but when it comes to me, as long as mum is there beside me, it gives me a little strength, or should I say, I require a lot of reassurance and encouragement from my mum, . Anyway, I loved the visuals and hearing the music live was really special. As soon as the concert began and music started playing, my eyes became watery, , still, it was a good memory and I'll always remember it with fond thoughts, .

 

Where were you sitting? We were in the stalls tier around the middle.

 

Best wishes

Ichigo

[Anyone on here that likes the Final Fantasy video game series?]

Does anyone else on here like the Final Fantasy video game series?

[‘faking’ and ’tricking’ your mind]

darkshine

 

Thank you for your reply, , and sorry for the late reply, , a lot happened over the weekend again, .

 

You asked at the start about faking and tricking your mind - you didn't think it was possible or something that you would want to do - that's fine because trying to fake or trick yourself doesn't work.

 

Yeah, faking and tricking is certainly something I couldn’t do anyway. I’m not strong enough, pains are always brought to the surface with me, and I couldn’t control it even if I tried. Maybe it can work for some people, but I don’t think that type of approach is right for me.

 

But my question is - what is this all really about? Because you say on one hand that you want to learn - but then on the other there are obstacles at every direction.

 

I know what you mean, and yes, I do speak like that. Yes, I do want to learn, but it has to be in a way I can cope with. I think being able to cope with something is very important to those on the autistic spectrum. So, I need to feel that I can try before I attempt something. If it does sound achievable then I’ll try, but it has to be on a grounded level, so that I am not pushed beyond my own coping level.

 

It seems like your stuck in a deadlock over this. I have similar issues in my own life, and at some point there has to be a decision about what I'm gonna do about it, because sitting torturing myself doesn't achieve very much. Sometimes I might be able to find an alternative way, and others I have to change direction altogether (by weighing up what is and isn't possible), and other times I know I have things to do first.

 

That is the case, I am in a deadlock. I think that compromise is an ugly word when you have AS, we find change very difficult, and combine that with a trauma and past experiences and that becomes even uglier. Honestly, I think it being difficult is an understatement, -_-. I understand where you’re coming from, and yes, I fully understand, but at the same time, I really think I need guidance in a one-to-one situation where my anxiety levels will not, metaphorically speaking, shoot through the roof. I do want to learn, but at the same time, is there no way that I could achieve that without being subjected to greater harm in order to achieve that, without spending out a fortune? Is that so unrealistic, ? I suppose with the lack of support in this country for those with ASD, it probably is, , and I think I’m answering my own question here, . I really hate this as this is exactly the reason why my mind has been in utter chaos over this ever since the 139a document came.

 

What I don’t understand is that I had the kind of education from behind my bedroom door on a one-to-one basis when I had the statement. When the statement ended the LA didn’t want to pay that any more, but yet I am entitled to help with education up till the age of 25. If that is the only way I can learn, and it proved it worked that way as I passed exams, then why couldn’t they do that again, instead of forcing me into a situation that I cannot cope with, and they know it?

 

What about you? What is really important? And can it be done? Or do you need to consider alternatives, change direction or do things first?

 

When I think longer and harder about it then I wonder whether online learning could be an option, but I need someone there in a presence that couldn’t see me and I couldn’t see them. When the tutors talked to me from behind my bedroom door, they were far away, but I could send things easily to them under the door. Being able to exchange things that quickly and efficiently online will be difficult, . They’d also have to understand my difficulties and wouldn’t rush me and structured the lesson, or learning structure, giving me an open ended schedule so that I am not pressurised and a starting point; I find it really difficult working under pressure and find it difficult to start and end things. If it could match all of that then, maybe, just maybe, I could consider it. It would be a push, there is no doubt about that, but I may try to try it and see, but I wouldn’t be promising anything.

 

Best wishes

Ichigo

 

P.S. I’m really sorry about not replying to your message on the other thread, I have been having a lot of trouble trying to get my head straight over it, . I didn’t mean to not write back to it, it is just very difficult to sort it out in my head, . I tried tackling it, several times, but I kept losing heart about half way through, I’m sorry, .

[SPD/OCD and a weird experience (Sorry, I think I might have put it in the wrong section)]

Sally44

 

Thank you for your reply, , and sorry for my late reply, .

 

I'm no professional, but I think your behaviours are more SPD, with anxiety about certain things. But I don't think you've necessarily got full blown OCD because when you have OCD it is like there is an extremely abusive partner living in your head that is nagging and threatening you ALL THE TIME to do things otherwise x, y or z will happen to you or your friends/family. It is like your brain has taken you hostage, and you cannot resist what they are making you do. It is not at all enjoyable and very upsetting and frightening.

 

Yes, I think I mainly display SPD, and I have heard that SPD can show OCD-like traits, I can’t confirm though if I just have SPD, as I am not a professional either, , then again with most “professionals” over here, I wonder how many are actually trained in ASD, . I was diagnosed with OCD in the beginning, though I definitely think that the SPD is by far stronger.

 

I swear when it comes to OCD my oma (grandma in German) has it in heaps and bounds, . In the beginning, she flat out denied it, but as time has gone on we think she began to see that she might, but I think it is touch and go, . Oma said that when she was young, her mother, my great oma, saw how she and her sister cleaned the kitchen floor, but when she saw it, she said it was unclean and tipped dirty water on the floor and asked them to redo it, as she said that it wasn’t as clean as she thought it should be. My oma isn’t as bad as that, but I think that she probably got it from her mother but in a slightly smaller form. She is so precise with everything from the curtains, to her bed sheets, to checking the taps are turned off, she is also so concerned about how clean things are, like her net curtains. She is also worried over where those across the road can see her and are spying on her. Time, position, cleanliness and such all play a big part for her.

 

I am not THAT bad with OCD, , it is definitely at a lower amount than SPD. I’ve probably got more of the hoarder side of OCD than anything, ; my room is always cluttered with lots of games and books and such, . I do fret over touching and treading on things, but I think it is a fear of the textures and such than anything else. As for the toilet, well, I think that could be a heavy mixture of SPD and OCD.

 

My son cannot touch his shoes, or let his feet touch the floor. He cannot touch door handles, or walk on ground where there is the possibility that any animal may have wee'd or poo'd on that ground. His first thing when returning from school is to get into the bath, and he is in there for hours, and after the bath he has to have a 'final rinse' shower to rinse off any germs he may have washed off into the bath water. then he has to get out the bath in a certain ritualistic way, and positions bath mats and towels so that he can get to his bedroom without contaminating himself again. And if he makes one mistake he has to go through it all again. And his anxiety level if really off the screen. He is absolutely terrified, hence the medication. Which as you say may have side effects, but thankfully we have not seen any. But without the medication I think he would have to be hosptialised.

 

And if a fly gets in the house, or lands on anything, he practically faints with fear, and everything has to be cleaned.

 

Sorry, when I explained my difficulties with SPD and OCD, I never mentioned all of it, .

 

I can understand your son’s worries with touching shoes, but I can touch my shoes, just not the underneath of them.

 

I don’t worry about my bare feet touching the floor, but I do worry if other people do so, , so I can certainly understand where he’s coming from.

 

I can’t touch door handles either, the only door handle I might be able to touch, at a push, would be my bedroom door, for everything else, I use my t-shirt, . I prefer wearing long sleeved t-shirts as it makes grabbing a hold of door handles a lot easier, and can act as a guard against the accidental brush against skin.

 

I can understand why your son wouldn’t want to go anywhere near where a dog may have wee’d or poo’d. I tend to get a little iffy when I approach a lamp post and such, , so I can understand where he’s coming from.

 

As I said, I take a torch out when it is dark to spot out for anything slimy, that goes for snails, slugs and dog poo.

 

As for baths, don’t get me started about that, ah, I used to remember screaming in the bathroom when I had a bath when I was young, due to my hair being washed and the feeling of soapy water dripping over my eye lids. My mum thought that other people must have thought that someone was being murdered, . My mum had to buy a special ringed head guard so that the water wouldn’t go into my eyes when my hair was being washed. As time went on I started to hate baths more and more, until eventually I changed to showers. I always need to have an old sheet on the bottom of the bath before I have a shower in the bath, if not, then I can’t go in there. I have always checked the bottom of the bath to make sure it is clean; no hairs and such, I have had arguments with mum over me checking how clean and clear it is. It was only a few years ago that I built up the courage to try washing my hair without a guard of some kind, now that doesn’t bother me as much as it used to. Baths were and now showers are not easy things for me at all. I can’t even go in my family’s baths/showers, as it is somewhere where other people have washed in, ah, I get worried over ours enough, never mind about other peoples, . My worry with baths or showers doesn’t come from germs on me, more the condition of the bath/shower itself, but I can understand where it came from for him. I can also understand not wanting to touch the floor until your son gets to his bedroom, lol, I can see where it came from, though I am not as bad as that. I do have my own towels separate from the hand towels in the bathroom so that I don’t have to dry my hands or face with something other people have used, I keep them in my bedroom so that no one else sees them to make sure they don’t use them.

 

I do go over some things over again, but not to that extent, more things like saving my document several times more than necessary and whispering under my breath to avoid disfavour.

 

Yes, I can understand with the seriousness of your son’s condition then medication is definitely a good thing to keep it under control. As for myself, I am always so indecisive, , I am also very cautious over everything too. I think I need a lot of confirmation first before I make a decision.

 

Yeah, about a fly landing on something in the house, yes, I’m not as bad as that. I do understand where he’s coming from though.

 

So I don't want to belittle what you experience. But I think the intensity of it is not what is experienced with OCD. Although OCD can happen to anyone.

 

Yeah, I have noticed the dominance of the SPD, and yes, I can see that your son is affected much more with OCD. I think I knew that my OCD wasn’t that severe, but I think when it comes to things such as the toilet, or stepping on slugs, snails, or in dog poo, it could be heavily in both OCD and SPD. I strongly feel the need to wash my shoes if I trod on snails, slugs, or on dog poo. I also have a certain ritual about the toilet as well. So, I think there is a greater influence of SPD but when it involves certain areas the OCD tends to get a lot bigger.

 

Sensory Processing Disorder is for life. The question about treatment up to age 19 is probably relating to your Statement. Because a Statement is up to age 19. Local Authorities often refuse to pay for OT input, especially sensory integration therapy because the NHS does not fund it. But it is a recognised condition, and some children [including my son] have got this therapy included on the Statement, but it was delivered via my son being at a special independent ASD specific school for children with around average cognitive ability. It took two tribunals, and alot of money to achieve that. So it is outside of the reach of many parents - although I would always advise parents to go to a Tribunal whether they have all the evidence or not because a SEN Tribunal can Order an LA to provide what the child needs, and it does not cost anything to go to Tribunal. It is when you have to pay for independent assessments/reports and ask those independent professionals to attend the tribunal as your expert witness. That is what costs the money.

 

My mum had gone to a tribunal and IPSEA had paid for two independent assessments, one by an educational psychologist and another by an OT who said I should have sessions every week, but as I said before the LA would not pay. The IPSEA representative wanted to call a consultant psychiatrist as a witness to demonstrate that the psychological elements of my autism would affect my education. He refused to attend. It also appeared to my mum that the judge at the tribunal had an issue with the IPSEA representative. In other words, my case was at a disadvantage because of this representative. My mum wasn’t aware that you could have another tribunal at the time. Also, my mum was looking after my oma, who just had a triple bypass operation at the time. Things were very difficult and very hard.

 

She really had no independent support, and to be honest that has continued no matter how much she has fought. My mum and I had two supposed independent advocates who promised the earth, but just before my statement ended, along with my education, one of them came to my mum and told her that she was being paid by the LA to shut her up, and both advocates disappeared without fulfilling their promises. My mum has made two complaints over the lack of support I was given and neither of them were addressed. Also the professionals never listen to mum, .

 

I completely understand where you’re coming from; it is disgusting that we have to pay out such large sums of money to prove the truth. It is reasons such as this that I wonder how in the world an individual with ASD would cope, .

 

As an adult I still think you could be seen by the Community OT. You would need referring to them. They should be able to give you a sensory diet, which if you can follow, may over time help you to become less sensitive to things. Or you maybe able to get some independent OT advice about how you could help with your sensory processing disorder.

 

Thank you, my mum and I will try pursuing that, ; however, we do have problems where we live as the LA is not cooperative with my mum. I very rarely see a GP as I have difficulties with that. The surgery itself is also not very understanding or supportive and the GPs keep leaving and changing. Neither my mum nor I seem to be able to build up an understanding relationship with a GP as they keep leaving. They’re very young and have no interest in ASD, and it’s difficult to switch to other surgeries. From what we hear, the other surgeries are no different.

 

For OCD, I would recommend that you have a look at www.ocduk.org website as that has some useful information on the condition.

 

Thank you for telling me about the website about OCD, I shall look it up to find out more, .

 

I hope your son is coping alright with his OCD, I can understand why he is having such difficulty. Although I am not affected as bad in OCD, as it is my SPD that I think takes dominance, I can still see where he’s coming from.

 

Best wishes

Ichigo

[SPD/OCD and a weird experience (Sorry, I think I might have put it in the wrong section)]

My son is on medication for the OCD fears about contamination and germs [sertraline]. And for the SPD he has a Sensory Integration Programme with an Occupational Therapist. He also has listening therapy which is supposed to help with the sensory system. There are things you can do to help your SPD, which an OT could advise you on.

 

Sally44

 

Thank you for your reply, .

 

Personally, I am not on medication to sort out my OCD, but in some senses, I get very conscious over the long term effects and side effects that might occur in taking them. So, I get very indecisive over it, as I don’t want to risk a chance of getting something worse to try to alleviate the OCD.

 

When it comes to SPD, I haven’t actually been diagnosed as such; however, when I was 14 I had a professional assessment by an Occupational Therapist (OT) and I know that there are many elements within that assessment report that touch on many issues to do with SPD. The OT suggested I have therapy once a week but, although I had a statement of special educational needs, the Local Authority said that they wouldn’t pay for the weekly therapy, and unfortunately my mum, being a single parent, wasn’t able to afford to get the therapy privately. We think that as a consequence of that I may have suffered in the process. The more I see myself and the way I am towards touch sensations and such the more I can make a connection with SPD. I am 21 years old; my mum asks doesn’t OTs mainly only treat those up to 19?

 

As you say, I think the SPD and the OCD cross over alot. But I think the difference is probably that SPD is about what you 'experience' or 'process', whereas the OCD part is how you react to that eg. having to wash, wipe, wear gloves, etc and that it is a 'compulsion' ie. not something you can reason yourself out of. It is something you MUST do otherwise you never recover from it.

 

I have noticed my OCD affecting me in that if I feel I said or thought something offensive in any way, even in the slightest possible way, I feel I must whisper under my breath; “Excuse my language, or thoughts, I didn’t mean it, I’m sorry”, because inside I fear that if I don’t I may be looked upon unfavourable.

 

I am also very conscious over how I save Microsoft Word documents, I feel that I have to click the save button several times to confirm that I have saved it, as I get overly conscious over whether I may miss the save button and think I saved it but didn’t and I could lose the file.

 

My mum has noticed sometimes in the past that I have had these nervous twitches, sometimes I don’t really notice that I do them as they are second nature to me, but sometimes I have a couple of anxiety ticks, one where I blink if my anxiety is high and another where I have noticed that I cringe; basically squeeze my hands together, or jaw in a certain way when I get high levels of anxiety or when I get excited. I don’t know if this is SPD, OCD, or AS in general though.

 

Do you have any associated fears about getting ill, injured or dying, or of family members getting ill etc if you don't complete the compulsions? IE. If you didn't carry out the compulsions, what is your brain saying will happen to you?

 

Well, I don’t really feel to the extreme of people will die, get injured etc. but I do feel that if I don’t wear the cotton gloves then I will be exposing my heightened senses to each service I touch. It does happen and therefore I wear the gloves to prevent it.

 

When I travel outside in the dark, I feel I must bring a torch with me in case I step on a slug or snail, and I do not want that to happen. I notice the squishing noise, and the feeling of stepping on one, and I cringe and I don’t want to experience that again, and so, I take precautions with a torch.

 

When it comes to washing hands, I can constantly feel the sensation of the touch, it irritates me, and I know that washing my hands alleviates that feeling, and so I feel that I must wash the affected area as quickly as possible, or else, I won’t be able to touch that area again until I do. There have been times where I have pushed my hands away from me and kept them away from my face until I get to a hand gel or wash my hands. If the area that I touched, thing, object, or whatever that I have touched is really bad, like, I accidently brushed my hand against a spider or fly or something gruesome, I feel I must wash my hands about three or four times to alleviate it, and mask the feeling and smell. I also cannot lift the toilet seat without a tissue as I don’t want my hand to come into contact with the toilet.

 

If one of my family members sucks their fingers, and I hear it and see it, or puts bare feet or legs somewhere I may come into contact with, then I cringe and my anxiety rises and I start getting agitated and can get a bit angry sometimes.

 

I suppose they are compulsions, but in another way they are also precautionary measures as well. I don’t know what to think, it is not necessarily about germs as such, though in some cases it might be, it is more the feeling than anything else, either the prevention of or the counter for them.

 

As for me whispering to myself, well I suppose that could be my OCD, but as for the cringing, I’m not sure.

 

Best wishes

Ichigo

[SPD/OCD and a weird experience]

ichigo it is very difficult to explain Autscape to someone that hasnt been before.

 

trekster

 

I understand that it wouldn’t be easy to explain something like Autscape if I haven’t been, sorry, I was just curious.

 

enjoy the book i hope it helps you.

 

Yes, it may take a while to get through the book. I tend to find ways to keep my mind occupied so that the chaotic worrying thoughts don’t take over, , one step at a time, .

 

Best wishes

Ichigo

[‘faking’ and ’tricking’ your mind]

How are you? Didn't want to sit and reiterate what I said in the other post....

 

You have quite a range of interests, do you think that some of them could give you some more freedom or help you cope more?

 

darkshine

 

Sorry for the late reply, .

 

I’m sorry; it’s just that as these are deeper questions, they are becoming harder to reply to. I have the answers, as I know my own capabilities, but explaining them is a different matter, it is getter more difficult.

 

Well, for my interests to provide more freedom and help me to cope more, in a straightforward sense, maybe not. In an outside box view, in some senses, maybe, as if my photography and abstract designing could be improved, and I learnt Photoshop and I was able to produce better artwork, that was actually being sold. Maybe then I could feel more positive, knowing that I was doing something that was both enjoyable and making me have a chance in life.

 

On one level someone could say that that won’t make social interaction any easier and yes, that’s true, but at the same time, it could lift my spirits, knowing that I am doing something enjoyable and constructive towards my future. To do so, I need to find the right way, the way that doesn’t push me over the edge.

 

Accomplishing the other skills could also lift my spirits knowing that I’m not wasting my life and I am learning something that I enjoy, in my own way.

 

I was slightly harsh in the other post, because I wanted you to see what it was like to challenge your thoughts a bit, and maybe that was a step too far for you - but it's stuff you should think about Ichigo, words like "always" and "never" are pretty all-encompassing words, they don't allow any movement at all, not even for the tiniest step.

 

Well, I’m sorry but, please understand that it isn’t just memories holding me back, but an interview will have to be gone through in order to even get into a college/university. I know that will be just like when I was interrogated by my PE teacher, which was also the head of year. The interviewer may not be a PE teacher, or the head of year, but the position of “head of year” is an administrative position and so will the interviewer be. On top of that the person that will be interviewing me will have the aura of hostility about them; it would be like a mouse facing a dragon. My cousin has told me what she has had to go through in an interview, and there is no way I could handle that pressure.

 

The way we talk mirrors the way we think in certain ways, and you have a fair amount of issues with negativity in certain areas - I know because I used to say the same things and I still think certain things - but what is a life without being challenged every now and then?

 

Being aware that there are those that do not understand us as they are not trained in ASD and knowing that there are only few people that are in the UK that are, makes me aware of the dangers out there. I would know those that are not trained are out there and even still, avoiding them is certainly not going to be easily possible as how do you know who is and isn’t ASD trained? You wouldn’t would you, so that makes it even harder. In some senses, maybe that’s why I need tutors behind my bedroom door, so that I can talk to them in the setting I feel the most comfortable learning in, so that I can develop skills to help me make a future for myself in a way I feel most comfortable with. Selling my photographs and designs would be pleasurable and perhaps achievable.

 

When you sit on your own with your thoughts, they aren't necessarily balanced or logical - when I say "you" I mean anyone, you, me, whoever - it's by talking to other people that you start looking at your beliefs and thinking about them.

 

Yes, that’s true, but some things may be harder to understand for others as we all experience pain in different ways. I was very sensitive at school; I was bullied many times, and bullied by teachers. Some people may think that that is nothing but please understand that as I was sensitive at school, I never found each easier to cope with. I always remember dropping my head on the desk, covering my face, and bursting into tears. The more that happened the more depressed I got inside, the more pain I felt, it built up little by little, bit by bit, until, I couldn’t take it anymore, and I felt that enough was enough. If I didn’t I think I would have gone mad, .

 

I know that a college and a university is a harsh environment. You may say that they are more responsible but, to be honest, there are even greater issues at play there. Interviews aren’t carried out in a primary or a secondary, but are in a college and university. There are more students in a class in college and university than in primary and secondary. In a university, you have to stay there. All of these things, I know I couldn’t cope with, no matter how much I tried, I know I couldn’t. I know myself all too well. How can I be sure that they would accommodate one-to-one teaching, and as for a University not for me having to stay there, before I would even comprehend it? As for an interview, surely that would feel just as hostile as it did when I faced my PE teacher, and he interrogated me, head of year is an administrative position and so will the interviewer’s job be.

 

Clearly some terrible things have happened and they have hurt or scared you - but it doesn't mean that everything forever has to be that way - it doesn't have to rule your entire life - there's some hope if you can find it - but to do that you have to stretch your boundaries a bit - even if the steps are so small that people can't see them. Also it is good to develop self-awareness to know when certain thoughts or beliefs can be damaging.

 

When school had traumatised me, I was adamant not to go back there as I knew the school was told I had AS, and yet, that interrogation took place with the PE teacher. My mum has been to the colleges around this area and she has found that they couldn’t accommodate my learning style.

 

I take carefully calculated steps; I consider all avenues before I make my move. I am not a risk taker, I am a cautious mover, and be that as it may, I need to know that I wouldn’t be put through hell in the process, but honestly, I don’t trust that a college or a university wouldn’t cause that to happen. How can I stretch my boundaries beyond my own coping level, for me, it would be like willingly accepting an emotional breakdown, how could that help me?

 

No, I haven’t been in a college or university before, but I don’t have to, I have heard enough about both to consider them extreme obstacles that are too far away to get to, for so many reasons, memories of similar experiences are just one of them.

 

No one had ever came in to talk to me from behind my bedroom door to sort out the pain the PE teacher caused me in the beginning, that’s why all of this pain has grown stronger and developed over the years.

 

Best wishes

Ichigo

[SPD/OCD and a weird experience]

Hi trekster

 

Thank you for your reply, , and sorry for my late reply, .

 

Ah, so you have approached the NAS at the events that you attend. I have never actually attended an autistic based centre before. I am not sure what it would be like. What is autscape like?

 

Well, I have heard of sensory aiding clothing before, but I never really thought much about it.

 

It’s funny that at the end of the video it should mention that socks with the seams sticking out get irritating, it is the same with me, , so I look out for socks that would feel less irritating. I have managed to get used to tags in t-shirts though, so that isn’t too bad. I feel a lot more comfortable in cotton t-shirts than I did wearing shirts back at school. Those uniforms weren’t comfortable by any means, but I had to do my best to get used to them. I couldn’t wait to get out of them when I got home, .

 

Well, I tend to avoid wearing fleecy jumpers altogether. As for feeling more functional on some days, well, on very rare occasions my touch sensitivity has a little less impact but, it was only rarely, only about once or twice in the past, and lately, it isn’t budging. Even the slightest brush against skin is enough to make me cringe and wash my hands/arms with urgency. I get this awful tingling sensation which is prolonged, and the only best way I have found to alleviate it is by washing the affected area.

 

Metal, for example coins, in my hands, makes my hand smell like iron, which is also irritating. Again, I wash my hands to avert the smell. OCD always seems to coincide with my SPD, .

 

I received the book that you told me about recently and I am beginning to read it.

 

Best wishes

Ichigo

[‘faking’ and ’tricking’ your mind]

darkshine

 

Thank you so much for telling me, but you didn’t have to do that, . Its fine, I completely understand. I didn't want to make things worse, it’s alright. It’s just my mind, .

 

Best wishes

Ichigo

[‘faking’ and ’tricking’ your mind]

In one way it was good that I wasn't close to my mum because I ran away and life got worse and after a decade of hell I am finally learning how to make things slightly better. Running away was a really dumbass thing to do, but I know that if my mum had been as good as yours, then it would have taken me longer to try things cuz if you imagine that you are holding this massive weight and someone else is willing to take the slack all the time, then when would you build up your own muscles (whether in the mind or the body)?

 

It's like talking, I struggle like hell to talk to certain people - well - most people - but if I am in a meeting and I'm sitting there going ummmm errrr ummm and I feel a total prat and I know if my friend is there I will look to him and he'll talk for me... well I could do that forever I guess, but what if my friend isn't always there? What if he dies? Then what would happen? So I began teaching myself to talk some of the time - it is very very hard and it takes a number of attempts to get across what I mean - and everything takes so much longer to work out - but I felt it was important to do.

 

The thing is Ichigo, it is great that you have your mum, and while she can help you then it isn't wrong to accept that help - but at some point you need to meet her halfway, because being a mum isn't an easy job to do, and neither is being a son, but you succeeding is what she would want to see - even if it takes you a decade to do it - I think she is proud of where you've got to so far, but you need to go further mate, and when you work out how you want to do that, you have a brilliant thing there because you know your mum will help you if she can, and maybe she will be the driving force for you for now, because sometimes it is easier to start off doing things for someone else if you can't do it for yourself, and you've got such a big leap to make in life from where you are now, where it is safe enough, controlled, limited even - but then limited is safe isn't it? Then there's the big bad world that is full of uncertainties, it is unpredictable and harsh - but it's what we are supposed to do - we have to get out there and experience it, and having someone to support us is great.

 

Coping mechanisms is the first thing to concentrate on, how much can you expose yourself to the world before you crack? I can handle a bit of it but I struggle like hell for so many reasons... but it's like exposure to something - if you saw a shocking image today, something that was so horrible you felt ill, if you saw that image every day for a year, would it still have the same effect? Sometimes yes, but sometimes you would get accustomed to it - and the world is like that - there's some things that you can get used to - you may not be comfortable or like it - but you can get to a point where it isn't total hell. Where the problem comes is when you go out there, something happens and you think "######, I'm not doing that again" and then it impossible.

 

I think too much - people often tell me I think too much - and sometimes they are right, because if I think of going out my door right now I feel sick at the thought, I think of all the stuff out there that makes me feel negative stuff and before I know it I haven't gone out for a week...

 

darkshine

 

Thank you for your reply, .

 

I understand what you are saying, but sometimes, trying to attempt that becomes one of the hardest things to do. Metaphorically speaking, it is like I have to willingly sleep on a bed of nails. Yes, I understand that I will have to make that move, in some little things I am beginning to try, but there is a huge difference between one step and another. I can see that difference, and it looks and feels extremely difficult. I think I’d need some guidance in order to fulfil those steps.

 

A meeting, you mean as in an actual meeting with professionals and such?

 

Well, I could never go, for obvious reasons, but my mum had been to many, and every time, she came back in utter tears, and went straight to bed after being completely ignored by those professionals. That gives you some idea the hostility she faced at these meetings. I know that if I was sitting around those professionals, I would not only be screaming in my head, I most likely will run for the nearest exit. It would be like facing clones of my old PE teacher all around me. Then, I would be in an actual nightmare, of that I can be absolutely sure of. To teach myself to speak to people like that, that never even listen to a word you say, as they have their own agenda. I remember, with the help of my old English tutor, I wrote a descriptive document about the difficulties I have which was sent to a CAHMS psychiatrist for my care to be sent over to the adult CMHT. They took one look at it, and were more interested in my writing style, rather than its contents, they completely ignored it. Even if I was able to speak to them, what response would I get, they’d metaphorically walk all over me. I can see that would be the case, I don’t have to be there to know that. My mum has received many minutes from these meetings that were totally full of lies, things that were not said, and mum has had to spend hours trying to amend them, only for them to be shoved back in a folder with no one actually attempting to amend the minutes. Also in one particular meeting alone, seven action plans were noted to be done and not one of them was fulfilled. My mum had questioned them about it at the next meeting and was completely ignored. Believe it or not but at one of these meetings the then medical director of Berkshire healthcare trust attended as my mother was so disgusted at the lack of help and support I was not given.

 

I knew that at some point these harder points will be brought up. I know that there were times where my mum told me to try to go up to a shop clerk to buy a book or video game that I was buying. That was terrifying, but I suppose I did it, it never really got easy, I still feel anxious no matter how many times I do it. I think it highly depends on many things here.

 

1. If it is a familiar place, as you have visited the place many times already, then it may feel a little easier, as you have seen your surroundings and got used to how it looks.

 

2. If you are in the right mood; you could have too much anxiety one time, as an opposed to another. That is something to take into account as well.

 

3. As I have gone through an emotional breakdown at school, facing anything that resembles education in a structured environment will bring out that pain, causing me to crack.

 

As you have said when things go wrong then you wouldn’t want to do that again. I know that very well. When my mum asked me to buy a book in a shop while she went into another shop, after purchasing the book, shakily, I walked towards the stairs and all of a sudden, all the coins fell from my hands and fell down the steps, ah, it was awful. I panicked, but I tried my best to compose myself enough to pick what coins I could see and scarper. That was a nightmare. These are steps and mistakes in themselves, but some steps and mistakes are worse than others. There was another awkward situation when I was taking photographs of a building, a security guard came up to me, asked what I was doing, and asked me to delete my photos. I walked back to my mum shaking. There are times where the world likes pushing me to a limit of almost having a heart attack. After that I came back home and cried all afternoon and night long.

 

Yeah, like me thinking too much I've been in a lot of potholes - but I've learned to avoid some of them - think of it like this, when you were a really little kid, like 5 or 6, even though life may have been really complicated then, it wasn't so bad because this whole "world" thing wasn't quite so urgent in your life. Now you are an age where it is, you see people doing stuff and know that you aren't, and then there's all these problems in life (like depression, anxiety, SPD etc) and that makes it harder still. then the world hardly makes it easy for us - so that's another problem - so isn't it easier to think of all these things that are wrong with the world? Maybe, I've certainly spent more than enough time thinking about it. But I can't change it. So where does that leave me? Or you? It's all back to choices I'm afraid, even with all the problems there is still a choice - yeah, sometimes we react and think later - but that still gives us a choice as to what we try to do next time.

 

Another problem between being that little kid and being an adult is that some parts of our brain may still have that element of childishness - and as far as I'm concerned that is ok - but not when it stops you living something of a life. It also makes things difficult when trying to do stuff - we were talking about little steps? Well they can feel demeaning as an adult - it's one thing going into some place knowing your mum will be right outside when you are 5, it feels different when you have to do that as an adult and you know other people aren't doing that and it feels dumb, I have had to do that to get out the house and it was a very degrading experience for me - but it shouldn't matter as long as you get what you want. Just one example - don't know if you feel that way sometimes too...

 

Learning from mistakes, yes, I do understand that, and I have learnt to wait for my old primary school friend to reply to me.

 

In the bigger scheme of things, I have already been affected by the breakdown at school, in one sense it gave me a better learning environment for me, being behind my bedroom door. I understand that that only gets harder after some time, but it has helped me a great deal. I am glad I did, if I didn’t I would never have been able to write the volume I am, or the way I have, nor would I be able to speak the way I am, or pass the exams that I have.

 

If there is a situation where to achieve a step meant sitting in an area where learning takes place, whilst bringing horrible memories of the past to the forefront of your mind over what happened to you at school. Well, if I had to gain something I had to be in that environment, that would not help me, it would rather cause me pain.

 

The pain that school has caused me is not due to childishness; please don’t say that, it is the memory that is causing this pain. The pain is the bad memories from school, they are what are holding me back, the awareness of who I can and cannot trust. I learnt that very well. I cannot just say it never happened, or the past is the past, the present is the present. Because we learn from our mistakes, we don’t just ignore them and berserk our way through in spite of it. Surely that is reckless, no?

 

It being degrading, yes, I feel that way to at times. It comes down to the, patronising wave someone may give you as you are disabled, and such. I do know though that people need to understand my difficulties in order for them to make a compromise at times, there needs to be at least the important structures of a bridge, before I feel able to walk across it. I cannot take a leap of faith only to see that I missed by a few inches. They also need to bridge some of the gap before I make my move. I know that is the case, especially if it involves the bad memories I have of my past. They will be thrust into my eye view if I experience anything that triggers those memories.

 

That's why I told you - I tend to not tell people on here stuff like that too often - but after hearing how you felt in that store, I felt that you would like to hear how it isn't just you. I don't like people looking at me, I feel like they can see inside me, and I don't like how I don't understand certain facial expressions, they might look sort of similar to other expressions and in the time that I am standing there trying to work it out I already look a weirdo, and it disrupts action like talking or reacting because the problem I was working out in my head was bigger than the social situation I was in. It makes things mismatched and disorganised and it makes me have bad timing, I also say stuff I don't mean to because my brain just doesn't filter it sometimes and then I offend people or they think I am rude.

 

And that's ignoring the fact that so much of social situations works on shallow levels that everyone else just seems to automatically understand but I have to sit and work out. It gets better as you get older and understand some of the more simpler rules, but it can still be highly distressing and confusing.

 

If that example I gave you from last week was from a couple of years ago I would have had to have moved from outside the store cuz it would have been so bad - and then I would have just gone home, leaving my friend wondering where the hell I'd gone - all cuz some guy looked at me weirdly for several seconds. Whereas now, I managed to concentrate on a pigeon and focused on that til he went away and then it was ok again hardly brilliance but better than running home!

 

Yeah, it is awful, . Not understanding, and then when things start to turn and become worse, that is why I responded to the girl in the store the way I did. I didn't want to stall and assess, I didn't want to look a fool. At the same time, I may lose out on whatever the expression meant, but I didn't want to get that annoyed expression like you did. In face-to-face social interaction it is always at times like that, that my AS shows up to me the most. Going home after that happened, I can understand the need to do that, but I knew that providing I avoided looking in that direction again, then I may not face it. Or at least think things through before it may have happened again, even though I couldn't have at the time.

 

I feel that way about mistakes too - but I have come to learn something that is pretty important... if you try to avoid every mistake then nothing ever happens because you can't possibly know what every single mistake is.

 

Mistakes are there for a reason, they exist for us to learn, you touch the iron when it's hot and burn yourself, you learn to test it first so it doesn't happen again - sure, you might forget one time and burn yourself again, but you'll remember harder to test the heat to reduce it happening again.

 

Nobody is perfect. Nobody, And as soon as you learn that you can become a better person because of your mistakes, you might be less worried about making some. Some of the most interesting people I have met are hopelessly flawed in certain things, but it makes them inspiring that they carry on anyway, that takes guts.

 

It is natural to worry when you have found life so confusing and awkward and difficult - of course you seek reassurance, confirmation, answers to all the things you don't know - it is a sign that you are trying to learn - but there are other ways of confirming things without having to worry about everything like that.

 

Take me for example - at times I do too much so I don't leave much time, and then I have to deicide what to deal with first, so I might put my reply to your post on hold for a while - because of my bad time management. This week I have been feeling pretty ill and some things are easier to think about than other things.

 

You don't overwhelm me - but you do make me think - that is fine, I don't mind thinking, and I don't mind the time it takes to reply.

 

You aren't doing anything wrong - but you know how you can really tell - with me at least - I still come back and answer you - even with bad time management skills lol.

 

I like you, your mind reminds me of mine at your age - yes our situations were different and are different - but it is due to that difference that we get to learn more.

 

I would say don't worry - but you are going to worry anyway - I know that from my own experiences, from having my mind screaming for answers and reassurance and certainty - but there are ways to tell sometimes - and I quite frequently just ask if I am not sure - the hardest thing is to not ask over and over again because a day later I am not so sure of their answer - I've learned to try not to do that so much - but in my mind I still think it!

 

When it comes to bad memories, they will always be in the forefront of your mind, just because I have tried something that circles around those bad memories, I know I will face the pain, no matter how many times I try. My mind has been tormented over what happened to me at school, which is one of the main reasons why I was unable to go to a college.

 

Facing a trauma and expecting to go through similar situations is going to land you in a lot of those worrying moments. Going through them may very well cause those memories to come out into the forefront of your mind, and time is another that will shake your ability, on top of the usual AS difficulties. That makes attempting things become even harder.

 

Yes, the fact that people do respond to me, but take some time, is still showing me that I am not necessarily making a mistake. It can be disconcerting though, facing nothing until you do get that response, leaves you guessing, . Over the weekend I had a lot happening myself so I can completely understand; we are all available and able at different times.

 

Thank you, writing to you is nice as well, , you also make me think, , so much so that it took me some time to respond as well, .

 

Yeah, I know exactly what you mean, ah, it is definitely the case with me. I have learnt through writing to my old primary school friend to hold off on some responses. In the beginning I was very apologetic, self-punishing and such, but over time I try to focus more on current events rather than that. It is difficult for her to understand the whole, positive negative thing though. I think with some neurotypicals their idea of life is more the positive than seeing those negatives. They may find it so easy to forget, or ignore those wrongdoings, but it isn’t as easy for us.

 

I find it hard to trust too, and at your age I used to stock up every bad experience as evidence of my failures and the harshness of the world and people in it - but when I kept doing that - it just reminded me all the time of how bad everything was/is. There are small pieces of the world that aren't like that and you have to find them, because as much as positivity is impossible, negativity is destructive. Use realism as the midway point - is every authority bad? Every single authority in the world? Or is it just some? Or even most? But even saying most authorities are bad is less damaging that thinking ALL authority is bad - is your mum not an authority in one sense? I bet she tells you what to do sometimes do you understand? That school experience is very real for you and it has effected your life a lot - but one day you are going to have to say - "that was then, this is now, that school cannot touch me any more, I won't give them the satisfaction" because I am pretty sure Ichigo, that the people who did that to you are not giving it a second thought - so it makes no sense for you to ruin your life because of them. One day you might see that.

 

Yes, we are hidden and often silent, and the pain and trauma is very real and damaging - and it's worse that they don't see that they do it to us - they go off about their merry little lives and don't think twice - which is why we have to learn to improve our defences and stuff, because we have a right to live too. I wish I could make the system understand and get you the help you want and need, I think you have the signs of being a very capable young man if you got given the chance to have a go without recrimination and judgement making things impossible, unfortunately I have no influence over that at all - but what I can say is that somewhere inside you there is something that can do things - you just have to find your own way - and there are some good people out there who can guide you. This is the hardest time for you because you are trying to work all this stuff out, and it's a lot to work out - but I also know that sometimes you have to give things a shot despite all those risks and costs, because stagnation is not an option.

 

Thinking in such a way is easier said than done. Going through that trauma has been soul shattering, to go through that again, well, it is certainly not something I would relish in the least. I know what you are saying about not all authorities are evil, but you also need to remember, when there is a commander of one set of authority, then all underneath follow suit. It is like a ripple effect. If those above are corrupt, then those below, and who may be good, will be forced to carry out evil measures to follow those corrupted orders, or face the sack. There is always room for greater corruption and greater evils in society, as long as those top positions are available to them.

 

Just as you could say, the world is not black and white, well, the system isn’t as straightforward as some are bad and some are not. Some may have no choice but to become bad if the head corruptor has anything to say about it. The term, “keep calm and carry on” comes to mind, . I can tell how many people follow that approach, if they consider that a British saying. It is that kind of mentality that makes corruption only get stronger.

 

The thing is that my mum has had experiences of those that were awful to her, and yet, when they came off of our case, they apologised. How twisted is that? They don’t do the right thing in their job, and only apologise once it’s too late as the damage was already done. There were others that even took that much needed apology with them, never even saying sorry once to her.

 

Since school I have always been a pessimist, can’t help it, school was awful, and I see many reflections from school onto the rest of the world, be it in bullies (criminals, back stabbing work colleagues, corrupted officials), detention (prison), teachers (bosses, and such), head of year or principal (prime minister, the queen). There are many reflections, and as many ways that corruption can be brought out like bullies at school. School felt like chaos and so does the rest of life in general.

 

Maybe so, but I can’t control the reaction I get the moment I see education taking place, the more I see it, the worse I feel. Those memories will be brought to the forefront of my mind; I know that will be the case. I can’t just hide them away; forget about them, that won’t work. When a trauma has been caused, you will be affected by it, even though the other person doesn’t know or care, it is the fact that it has been traumatic for you; you will feel pain every time a trigger is set off.

 

I read everything I can with as open a mind as possible Ichigo, and there's a lot that as happened that has been either very bad or wrong for you and your family.

 

I don't like social services and have heard several horror stories - but I have also heard some cases where they have been brilliant. That is the problem with people you see, people and money, because each area of the country gets different amounts to do stuff with, and then it all depends what kind of person you see too.

 

Social services has come along in some ways, it is better than 10 years ago for example, but there are still faults, massive ones.

 

They shouldn't have tried pushing your oma to sign things - but this is where you need to understand the nature of the beast as they say, the people in those jobs have these forms with loads of little checkboxes to tick, they have a boss pushing them to tick those boxes, and some of those people don't do things the right way to get those boxes ticked - and yes that is wrong - but they are just people, some are in the wrong job, some are under pressure, some have given up and are merely functioning like robots, and some actually do care.

 

I'm not involved with SS, I'm in the other oh so wonderful system (sarcasm) of the mental health services - and boy aint that just a whole load of other rubbish the thing is - sometimes you have to work with the idiots in order to get anything done.

 

With this document, the one for your education, so you;ve got you on one side saying what you need, and you have them on the other side saying that you should just magically go to college - if you are dead-set that you want more education then the most likely answer is compromise - or it is delaying things while other things get put into place (like helping you out with your SPD and anxiety - which is clearly a big part of why you can't do what they want). Until someone gives a little you are gonna be stuck in a deadlock with it. You have to ask what you can do to compromise - then get your mum to offer that compromise and really point it out to them that you are trying to meet them in the middle somewhere - and see if they are willing to look at other ways around this, but as I see it they either need to help you with the problems that are preventing you from going to college - or they have to come up with another way around it - bringing college to you is a very expensive option, and not the most likely - but could you attend college if there was a one-to-one tutor? If you could find one you liked? Can you compromise on what you want to learn? Or where? Is there any way you can think of that would be moving towards what they want, but not so far that you can't actually achieve it (it's one thing saying that you'll go to college - but only you know what you can and can't do, and what you are willing to try to do).

 

Yes, it was and still is, and when all of us have been affected by it, including the fact that it stopped my sister and I from building a brother sister relationship from the beginning. As I said, that is not the whole family story but I hope you get the gist of why I will not trust social services.

 

Yes, as you say learn from mistakes, well, I have learnt not to trust what has caused our family more harm than good. Why accept those that have obliterated the family foundation, they chose the easy way out, my family’s destruction. I may have been a baby at the time, but the harm it has caused both my mum and my sister is very real. I know that, and I don’t want them to do the same to me. I know not to trust them, that is enough.

 

A barrister said that he knew the social worker on our family case very well, and she was very well known to split families apart, and she enjoyed it. She left our area from where we live and is in another county, and she is still there, some 20 years later.

 

When your family has been destroyed by an organization, of any kind, naturally, you wouldn’t trust them again, no? Well, neither would I. I appreciate that others found them helpful, but please remember, I do not trust them, if others wish to, then that’s fine for them, but I’m sorry they are not for me.

 

Mum has also had bad experiences with the mental health department. She had her first grand mal epileptic seizure in the psychiatrist’s office. He then continued to prescribe her medication. SS and the mental health department have both harmed her one way or another. The harm they have caused has caused both my sister and I not to trust them. My sister said that she could always remember our mum coming home in utter tears after visiting her psychiatrist. Can you blame us; when we see the harm they are causing our mum? Mum has no other choice but to see her psychiatrist to get her medication, but suffers the abuse they have given her over the years.

 

You have to work with idiots to get anything done, how in the world does that even work? My mum has to do the exact same thing with the local authority and such. You’ll more likely cause yourself heart failure then get them to do the right thing. My mum fights and fights, I wonder whether they even listen to her.

 

What is even worse here is that the pain that school has caused me, made me feel extreme pain when I start to approach a school environment. I remember all of those bad memories of my past. It matters not if it is a primary school, secondary school, college, or university, the pain will be brought out in each setting. Memories can be awful when you have gone through trauma, they never leave you, and they constantly torment you.

 

Well, in a college, all that pain will come out much stronger and I would be unable to focus. Four things need to be taken into account here, I think. One is that people’s eyes on me distract me no end, two the volume of people in the class would instil claustrophobia, three my SPD and OCD would go crazy in a room where everyone would be in close proximity, i.e. sitting side by side or in other ways, and four the horrible memories would flood into my brain faster than lightning.

 

It is not only what I can do to compromise, it is also what they can do as well. I need to be able to do it, not just say, “Right, here I go, bombs away”, they need to help me just as much. Metaphorically, you cannot build a bridge if there isn’t a solid foundation first. They also need to help bridge the gap as well.

 

I think the answer then is to have a nice little quiet event that you are comfortable with - I don't think the problem is really your cousin though, not exactly, I mean that of course the things she said made you feel bad, but I also think that it is as much about you being angry that she's leaving you behind and then pointing it all out in an insensitive way that is making you feel bad. So that as it stands now the problem is really yours, because she's doing things you can;t and that sucks big time - if you want to prove yourself that's fine - but you have to do it for yourself.

 

One of the things that really gets to me in life is being left behind, it's painful and demotivating to be left behind, but I guess we are all on our own journey and we won't always go at the same speed or in the same direction.

 

I wish my cousin could understand me a bit more. She is so used to me when I was younger growing up, but as AS becomes more prominent in teenage years, she is flat out denying it. She thinks I just make it up, that it is all an act. She never even sees what I am like in the “outside world”. How would she know? I think when it comes to some people then it may take practically forever trying to get them to understand you when you have AS. They are not used to that change, you know it has always been there one way or another over the years, the alienation at school, my SPD in the face of food, etc. She has no idea what it is like. There have been times where I have explained and explained to her, but she always gets the wrong end of the stick, it is frustrating.

 

Yes, her advancing makes me in turn feel worthless, and yes, I am aware that my AS makes progressing even harder, but I really do think that I need to feel like I have actually achieved something worthwhile before I see her face again. The thing is, my auntie came around on my birthday, I didn’t want to make things worse, maybe thought that my cousin should at least come around for a coffee as I didn’t want to make things worse. My cousin said to my auntie, that she wouldn’t, my auntie said that she doesn’t want to come around because she thinks I have an old grudge against her. It is utter nonsense, she always thinks that when we were kids we used to argue and such, she thinks I still think about all that, but I don’t. I just don’t want to be on the bad side of anyone but the pain was too strong. She thought that by not coming she was getting her own back on me, but the thing is, she was actually helping me by not coming, lol, she really doesn’t understand me at all.

 

Yes, being left behind, that is definitely painful and de-motivating, and for that reason, it makes facing some people or experiences that much harder. The bad memories don’t help either, but I can’t just snap my fingers and forget them. It doesn’t work like that.

 

The first part of that question is impossible to answer where indeed? Well, you just never know Ichigo, you could meet someone online, you could look at your family, your oma or your mum, your could look at great writers, scientists, historians, whatever floats ya boat really.

 

Inspiration can come in many forms, I look at some of the older people on here, and see that they are further in their life's journey than me, and it gives me hope that I can get further. Certain things people say can inspire me. But it has to come from what matters to you.

 

I think that the key thing in part two of your question is that there might be a few people out there in the world who have succeeded from behind the door - probably in the world of the internet - but that seems like the wrong battle - the battle is not succeeding from behind the door - it is getting out from behind the door in order to succeed that is the real battle.

 

Of the last decade I have spent a very very large percentage behind closed doors, and then when I go out into the world, there's more closed doors, but I have all the fears you have about the future and about time, and the fact of the matter is, the world is outside your door, somehow the answer lies there...

 

If I ever succeed I'll inspire you but it won't be from behind my bedroom door (which is where I am right now as I am not feeling great) it will be outside the house, cuz that;s where everything is.

 

You could always attempt to become an internet superstar I guess - but that's not really addressing the problem of being behind your door... the internet is a tool you can use in any way you think of - I use it for learning, for socialising on this forum and via email, and for studying. I also use it for fun sometimes - but to be honest, I don't want to have to live my life this way for much longer - I didn't have the internet at your age - maybe you can learn stuff quicker than I did - who knows - but you certainly have a head start

 

The key word there is somehow. I know that the medicals that people on benefits have to go to cause them to get appeals as they say they are fit for work, even though they clearly are not. Then after successfully proving why they are not fit for work, about one week later, they get another medical; go through the same process over and over again. I have heard of people dying after going through that process about three times. I have to go out to that? Now that is suicide.

 

In the future, I could never go to an interview; the pain that that PE teacher caused me would make that feel like a mouse meeting a dragon, in a closed off arena. The information from what my cousin has said in the many interviews she has had for all sorts of things, even in education, there is no way I could cope with it.

 

There are many stages of life that look more and more closed off, even if I wasn’t behind my bedroom door. I need to be able to be taught in a way I feel comfortable with, nobody can really learn whilst being put through a great deal of stress and anxiety.

 

You say that outside is where everything is, but is it? Remember how the government are cutting benefits, but also there is mass unemployment, they are cutting EMA, and stopping GCSEs over O levels and GCEs, where is the hope?

 

Well, yes, maybe I do have a head start, but remember, when you have gone through a trauma, trying to attempt things again becomes even harder. Compromising is a lot harder than it sounds if memories have anything to say about it. There can be trigger points out there, and my cousin is one such example.

 

Achievements are just stepping stones, I think you can say you achieved something and not worry about stagnating - the fact you've thought it indicates that you wouldn't let that happen. There is a saying about pride coming before a fall - but I'm not saying turn into an up of himself idiot lol, just to acknowledge sometimes that you did something, and for a while feel good that you did! You know yourself that if you did something that was hard and succeeded, you wouldn't just say "well, that'll do me for the next 20 years" - not with a fear of time and the future - that fear will keep you looking for the next thing - just acknowledge - that is all. Consider making a chart, book or computer file about what you want, need and have to do, make a checklist, tick it off, if your plans change, change the list, but by visually ticking things off, you will see what you have done. If your into maths you could even chart it lol - nobody's saying turn into an egomaniac, humble and grounded is fine, and that's better than being negative and dismissing of what you actually do achieve - it's a personal thing really, you could do it with your mum's help too if you wanted some outside input, when things are hard and you manage to do them then it is good to simply say "yes, I did that", it doesn't require pride necessarily, just knowing that you have done something that was difficult to do

 

I am a jack of all trades, and I like being that way, it's more interesting.

 

What things would you like to do to get enjoyment out of?

 

Best wishes

 

Darkshine

 

Yes, thank you, , I shall begin a chart to acknowledge my achievements.

 

Well, lol, I could go into fantasies over such a topic. There are many things I’d like to learn, but I do need opportunities to fulfill them, I also need to think about reality as well.

 

In an ideal world, I’d like to improve my photography, become skilled at Photoshop and such, and improve my designing skills. I definitely feel I need to see my designs and photographs actually selling to make me feel better about it though. The problem is that I am always worried about showing people online in case they steal it, even when I put a watermark on them; I need to put them in the right place, i.e. a place where I will still be acknowledge for my work, and put a unique signature on them as well. Ah, this is quite a difficult one.

 

As I have already said I’d like to learn Japanese, ever since I started watching animé and reading manga books made me interested in everything Japanese, lol. I wanted to learn German as my oma (grandma in German) is from Germany, and it would be interesting learning a language from a country that my close ancestors have connections to. I wanted to learn Chinese to a lesser extent, mainly because I know about Romance of the Three Kingdoms (RotTK) from my Dynasty Warriors games, but also because of that knowledge of the RotTK era of China made me interested in the cultural history of China.

 

As I say in my interests, I’d like to learn computing in as many forms as possible, I have been interested in computers since my dad bought me a second hand one when I was little. Well, that’s true, first of all in computer maintenance.

 

My dad knew about computer maintenance but died earlier this year, and I never even got to know him much as I said my mum and dad were split up, I saw him when I was little fortnightly, but after some years later he didn’t want to see me for a long time until I was 16. He came back onto the scene, by calling us up. I was too scared due to my AS, I need to build confidence to see someone like that after all that time. On December of last year though, I sent a letter to him, but he had apparently moved two years previously without even telling my mum and me that he had moved. He died two months after I sent the letter. That’s when their family told us that he had moved.

 

But anyway, back to the interests. Other computing I may pick up an interest for over time, but for the moment definitely computer maintenance. It is because it would be far easier if I were able to fix my own and mum’s computers and not have to rely on those that could rip us off. I also want to learn so that I could upgrade my computer to a better standard myself.

 

I have thought about learning a musical instrument after hearing the emotional music in the middle of animé. There can be emotional piano and violin music being played at upsetting scenes, and such. I know that a piano, or keyboard, would be easier than a violin, so I could learn the animé music and play them on a keyboard. I have seen others do so on YouTube, I’d want to try myself.

 

To some extent, I wouldn’t mind trying out manga drawing, but mainly as a hobby, I can’t just up sticks and move to Japan to enter a manga company, , for very obvious reasons, my AS, SPD, and OCD alone would make that a living nightmare, never mind about a dream.

 

I am a person that may develop more interests over time, but these are the main ones. I may feel like learning others over time, as I am ambitious, I will feel like trying new things, if I can.

 

Best wishes

Ichigo

 

P.S. Sorry for my late reply, I had a lot happen over the weekend, and I needed to get my mind straight again.

[Concentrating on developing skills]

Hey Ichigo, your writing is fine, right now you have a lot to say because it sounds like you've lived a while being able to say very little - it's fine - some people may be put off, some people won't, but I'll tell you something ok?

 

I often worry I write too much when I write to people - except for one person, I've found someone who I can write war and peace too and they answer me and aren't bothered about the war and peace length of what I say - and what's even better is this person writes war and peace back to me and it's great because everything they say is interesting to me - I don't know how we say so much - I wonder if we'll run out of things to say because we say so much, but that isn't likely with a mind like mine, or a mind like his and you know what? It's funny because me and this person can say so much but we still struggle with the social kinda things and that makes me laugh because we can say so much about everything, but ascertaining something like "are we friends?" has been much more problematic.

 

darkshine

 

Thank you for your reply, .

 

I can understand the difficulty with saying “are we friends?” when it came to MMORPGs (Massive Multiplayer Online Role Play Games), that was so much easier as the concept on a game to real life is all too different. I found it so much easier saying, “shall I add you as a friend?”, as the concept on a game means nothing in comparison to the real world. When I added friends on those online games, we never talked again; it was a pointless system in the end. Nothing came of it, unless you were willing to take the next step, add them on Facebook friends, I couldn't, and not only because I never had a Facebook account at the time either, so nothing had come of them.

 

The point is - there are people out there in the world who can handle it Ichigo, and one day you will feel different in some ways because you will have to judge when and who you should bother talking to and when/who you shouldn't bother with - and that's a hard thing to learn - but you know what? It's better to keep trying than to give up and stay silent - you have a lot to offer - you just have to realise that too.

 

Yes, finding someone that shares a common interest is definitely something I have been in search of. In another sense, if I was to meet someone, but the setting was a place that brings back emotional pain from my past, then what would I do? I would be drawn between pain, anxiety, and trying to cope, whilst trying to talk about something of interest. That is a lot harder than it sounds in words. I know that it would be a twist on the meeting of my cousin, in a comfortable environment, to meeting someone with an interest of mine but sitting in a setting where great painful memories and feelings come from. I couldn’t focus, my mind would be in chaos, I’d need to be able to talk to them in a setting that I was more familiar with, as I know the difference between a familiar place and a place with strong emotional pain is major.

 

The worry now is that when I was talking to that primary school friend, I have noticed that she is writing to me less and less. I asked her about that before and she has a lot of work that she is doing and she gets very busy so she replies quite late. I wondered that she is beginning to write less and less, is that because she and I do not share much in common, and that she is politely distancing herself. What I have been thinking is that should I try meeting up with her again, as it has been a few months since the last time we met. Is she distancing herself because I haven’t suggested meeting up? This is what I am thinking about whilst writing to her.

 

So what happened with this other friend? Did he reply or is it a case of "that one isn't going to work out"?

 

No, that secondary school friend hasn’t responded to me, . To be honest, I think I need to either give it time, or just try my hardest to get my mind away from it, and that is easier said than done. Regrets will stay with me, but I hope, , by finding new friends then that regret can have less of an impact. Yes, somehow I think it may be “that one isn't going to work out”, as I left things in a bad way with him from the pain that school had caused me. That incident didn't just create pain out of the losing of trust, but also made me lose a good friend in the process, so anything around a school environment will immediately trigger bad memories. If I was to try to enter a college or anywhere else where education takes place, then I know those emotional triggers, those triggers that only come from seeing education in practice. I’ll remember time, losing a friend, lack of education, and so forth, and inside, I would scream. How could I learn in a college environment when I feel like screaming?

 

And as for the state of the country - well - I'm not even going there on that one today - cuz I am in several mindsets about it and today is mainly the negative one I don't think that is helpful cuz you already have that view. But the way things are hard for people, and the way people who need help don't get it, well it sucks big time, but that's why we need people who fight for a better life. There's people who are struggling to help other people, off their own backs, and the differences they make may look insignificant when viewed against the backdrop of the whole country - but I know that these people make a difference to the lives of the people they help, an stuff like that, it's important, it's a start.

 

In some ways my aim in life is to get "better" and to learn - I'm learning all the time - and then I'd like to share that learning cuz there's people who need help with stuff, but even that is hard because there's so much that people need help with that I have to choose where to put my efforts at some point and I just don't know.... I see someone like you and I wish I could help.... but it is frustrating that I can only do so little when I am certain there are answers out there to help you. even though my life has been different there are many parallels, and I understand your thinking, it's just that there's more stuff you need to know and that is not the easiest thing when you have a mind that can be split between knowledge and fear, and other opposite things that instead of adding variety to your life can actually end up restricting it.

 

Yes, I can fully understand finding the right place to give the help you are trying to give, and a forum is definitely one example of a good place to provide it. I and I’m sure many others on this forum came on here both to look for and provide some help in some way, though, to be honest, I am not sure what help I could be to others.

 

There is a way Ichigo, somewhere and somehow, there is a way to get from behind your bedroom door - and the most frightening thing about that is that the battle will be mostly yours, at the end of the day that's going to be a big part of the key to everything - I don't feel like I fit in, I don't feel like I belong, but there's a couple of things about that.

 

My mum has come across people that have not helped us because they consider our case “too complex”. I cannot help being in a complex setting, I did not ask for the PE teacher to interrogate me the way he had, causing me to go behind my bedroom door. I can’t help getting emotional triggers of pain every time I see education around me. How can I concentrate on learning in a college environment when those triggers are surrounding me? If the triggers are in a learning environment like a college, then that will affect me if I come head-to-head with anything belonging to a primary school, secondary school, college, or university. It matters not which, it is the principle that I remember, never mind about the concept of trying to concentrate surrounded by people, and distractions and such.

 

The thing is that it is the painful memories of my past that hold me back, though I cannot just shake them away, they provide us guidance for the future, but at the same time, bring restrictions. I cannot help it, there will be an emotional trigger when I come across certain things, I don’t know what to do to avert that.

 

1. finding that friend who I can say anything I like to and know I won't be judged or reprimanded or that they won't do a runner because I'm so intense at times with my thinking and honesty.

 

Yeah, I think we are all searching for someone like that, . I hope I haven’t pushed anyone away with the way I wrote to people, and they have not said otherwise, I suppose, so I think it may be a battle within me, . Though, I know that I need to be careful, sometimes I may write too much, or at least need to give others enough time to think through what I wrote, . I think I tend to churn up worries the longer it takes for the person to reply. I think I tend to beat myself up, thinking all those worries I have over my writing. As I have said before, I don’t want to be on the bad side of anyone, and be that as it may, I tend to revert to self-punishment, .

 

2. even though there may not be a dedicated space for people like you or me, even though we may not fit it, or belong or anything like that, well I guess there comes a choice doesn't there? We can hide. Or we can fight for our place, create it ourselves, despite other people, despite the government cuz they can do so many things to us that hurts but they cannot stop us from being who we are inside - and if we let them then they've won - and the sad thing is - they don't even know what they have done, they don't know that they are hurting you or hurting me or everyone else they are hurting, and whether they care or not - is it not a total waste to not live when the very people who are preventing you from doing so don't even care or notice...

 

Yes, I totally agree, but, there is one problem. Finding that right path in life may be increasingly difficult, due to many factors. One would be the emotional pain that happened at school, will trigger inside of me a memory of the dark times of my life. I cannot push that to one side; it is a major dark memory inside my mind. In so doing, an educational environment will bring back all that pain. How can I continue down a road, whilst screaming in your head from those bad memories, that doesn’t make sense to me? Another factor would be crowds of people; I cannot concentrate when I am constantly worried over those around me. My sensory issues may also drive me crazy, it did back at school. An example of this is when someone borrowed my protractor, began sucking on it, saliva covered it, and I shoved it in my backpack, without touching it, ever again. An interview of any kind would feel extremely hostile and immediately remind me of the PE teacher and the interrogation. Bad memories do play a huge key in many cases. It is not just my reflection of how I would cope in the situation, but also, that those memories will be brought out when I experience similar things in life. All these factors and more would prevent me from making a step in life.

 

The truth is, I don't know, I'm just throwing ideas around, but I can't help thinking that it is totally wrong the way the world is - but there are pockets of happiness to be found, however brief or lasting they may be. Like finding a friend and being allowed to be a friend back. Like slowly realising that sometimes who you are isn't a bad thing and that it can be a good thing. Not many people make me feel like this, but this friend I have now, who writes war and peace, he accepts me and it makes me feel more acceptable - even if it's only a really small feeling, it is a start - but there's something about someone liking me that means a lot when I know that they really like me, and actually like me for me, and not for the pretend me that most people either get to see or choose to see.

 

Best

 

Darkshine

 

Yes, finding someone that likes who you are for the way you are is definitely important. To know that someone accepts you for who you are, is something I think a lot of us strive for in the “social world”. I don’t know if it is because she is friends with mum already or not, but that old primary school friend does write back to me, even if it is taking longer for her to reply. She is busy with work, and I understand that, but the fact that she is writing back even then is something. One thing though, she does like saying that each response I send sounds more positive after coming on to this website, though, I am still trying to make sense of everything, . Since writing to her though, it has made me feel slightly more confident to come on to here in the first place, which I suppose is a kind of positive step.

 

Since writing on this forum, finding others with certain similarities makes me feel less alone, to know I am not the only person with difficulties. I think coming onto this forum was definitely a good idea. I need to analyse everything though to an extent that I know that it will not conflict with my inner pains, but once I know that something is achievable, within that acceptability, and then I would be willing to try.

 

Best wishes

Ichigo

[SPD/OCD and a weird experience]

SPD would include the extra 2 often forgotten senses ie proprioception and balance. Occupational therapists tend to be specialist in helping children only with sensory problems. This is coming from someone who asked for a sensory assessment time and again from various professionals. This is also the reason why the research is aimed at children only. I have mentioned to the NAS that aiming their literature at parents of children will give medical profesionals the wrong idea ie that autism only affect children.

 

Hi trekster

 

Sorry, I had a lot happening over the weekend so my response is a bit late, .

 

I didn’t really know about the proprioception and balance side of SPD, thank you for informing me, .

 

Yes, I have also noticed there being a greater emphasis on children with SPD. From what I have heard from stories of those in America, a woman had touch and sound sensitivity, and her touch sensation difficulty caused her to hit her husband so hard that it caused him to go to hospital. A bit extreme, but that proves that it is not just children that suffer from SPD, adults do as well. I see more and more similarities to myself, but looking over here, I see nothing but helping children, . Just because I am an adult, it doesn’t mean I don’t have SPD. What was NAS’s response when you mentioned that to them?

 

If you find a way of improving one sense you can improve other senses as well.

 

When you say improve one sense, do you mean to find coping strategies, for example via cotton gloves and such, or adapt my senses to suit the situation, i.e. to get used to shaking people’s hands?

 

My Protec sensory jacket makes me feel grounded. I have always craved weighted items and was quite upset upon realising that my weighted blanket was causing injuries to my joints due to my HMS. Another member on here went to NAIDEX in Birmingham with me. It was their recommendation and I really missed out last year. The exhibition is (ironically) an SPD persons nightmare but does have some stands for sensory improvement equipment.

 

I had a look at the NAIDEX website in Birmingham, and from the looks of it, all the available equipment for SPD is for children. Why in the world is this country not realising that adults have SPD as well, ?

 

"Too Loud Too Bright Too Fast Too Tight" by Sharon Hellier is an excellent book although i would disagree with her viewpoint that certain disabilities are misdiagnosed when it should be SPD (or sensory defensiveness as she calls it).

 

Well, I have been diagnosed as having OCD, and I am sure I have SPD as well, as they both seem to affect me one way or another. I have thought that they meld together to create an even greater obstacle that is difficult to budge. One such example is that I need to wash my hands and arms if someone brushes their hand or arm against mine, but it is due to the feeling, not the germs. It has become somewhat of a ritual though, there being the OCD. I know I have irritations with clothing because of the sensation I get, for example fleecy jumpers make me itchy.

 

Best wishes

Ichigo

[SPD/OCD and a weird experience]

Hi smileyK

 

I don’t know myself as, technically, I haven’t been diagnosed as SPD, but I can clearly see that there are definitely signs that I display that are SPD.

 

All I can suggest is to find an Occupation Therapist that is trained in SPD and/or APD. Visiting your GP might be advisable as they may point you in a direction of, or refer you to, someone that could be trained in SPD and/or APD. Other than that, I don’t think I can’t help, as I haven’t been diagnosed with SPD myself, but I am sure I show signs of SPD.

 

Best wishes

Ichigo

[SPD/OCD and a weird experience]

Hi smileyK

 

From what you have said it definitely sounds like you have more than just AS and dyspraxia. I think you should do some more research into sensory processing disorder. From the sounds of it you have difficulties with touch and sound. If sudden loud noises are really painful and you can’t stand the feel of cotton wool and polystyrene, then it definitely seems likely that it could be SPD.

 

So, yes, I think you should do some more research as AS and dyspraxia are not about the sensations you feel after sound and touch, but SPD (SPD is due to all five senses) or/and APD (APD is due to sound) does.

 

Best wishes

Ichigo

[SPD/OCD and a weird experience]

Hi trekster

 

Thank you for your advice about subscribing to threads, .

 

As I am relatively new to this site, and found writing to people so alien to me, , I hadn't really explored that side of the website in greater detail. I shall try to get more used to it, and begin to follow more threads.

 

Thanks again

Ichigo

[SPD/OCD and a weird experience]

Hi smileyK

 

Well, I cannot provide any solid advice as I am learning about certain difficulties I have myself, but I’ll answer as best as I can.

 

SPD, or sensory processing disorder, affects the five senses, touch, taste, scent, hearing, and sight. People are either over stimulated (irritated by), or under stimulated (to seek out), by certain things. Basically people either hate certain feelings, foods, smells, sounds, or visuals, or they crave them. I am mainly affected by over stimulation, or am defensive towards touch and taste, so I have a great trouble with shaking people’s hands and such, and I am restricted with the foods I can eat.

 

Yes, there isn’t much available information out there when it comes to adults with SPD in the UK, as far as I’ve seen on the internet. I find that most websites that talk about SPD in adults tend to be in other countries. Below is a couple of links, the first is explaining more about SPD in adults. The second is a link to a website I had found before but I don’t think it’s based in the UK; it contains a checklist to find out if you have SPD, but I don’t know if it would be valid in the UK though. I don’t know if such a thing is available over here, but supposedly you could bring it to a Doctor, Psychologist, or Occupational Therapist who is familiar with SPD to decide if an evaluation and further treatment is indicated. I cannot guarantee that it will work over here as the website was not from the UK.

 

http://www.ehow.co.u...der-adults.html

http://www.sensory-p...-checklist.html

 

I think dyspraxia is to do with having poor hand-to-eye coordination, or motor skills, for instance, someone might have problems with trying to catch a ball. I have added below a couple of links explaining more about dyspraxia:

 

http://www.inpp.org....osis/dyspraxia/

http://www.nhs.uk/Co...s/Symptoms.aspx

 

APD is auditory processing disorder. I can’t help you with this as I don’t know about the condition, all I can say is that it is about having a trouble with the hearing and spelling of words, both in reading and spoken. Below are some links explaining more about APD, in the first two links it talks about how APD can affect adults and in the third link is to a Yahoo group with other adults with APD:

 

http://www.tempinfor.../adult_page.htm

http://www.inpp.org....ssing-disorder/

http://health.groups.../group/OldAPDs/

 

Best wishes

Ichigo

[SPD/OCD and a weird experience]

trekster, I am very sorry for replying to you so late, in truth, I only just saw your message, .

 

Thank you for your reply, and yes, I have looked up that book, and ordered it, .

 

Thanks again

Ichigo

[‘faking’ and ’tricking’ your mind]

One day you will be more sure - I felt the same way to start with - and for many years before I even joined this forum too - unfortunately I did not have such a close relationship with my mum when I was your age

 

That's all you can do mate, keep taking those steps, there may be bumps in the road, but in time you sometimes learn how to avoid the potholes (as in after enough years you get to tell certain things that are really confusing for you now).

 

darkshine, I am sorry that you didn’t have a close relationship with your mum when you were my age. I think I would be lost if mum wasn’t there to support me one way or another. I can drive her crazy with my OCD, sensory issues, and constant worries, but yes, we have a close bond. To be honest, if something happened to her, I worry about my future, . She is the pillar holding me up, I know that if I was alone I would be crushed in mere seconds, . I think, at times, I can tell whether or not I can cope in the future, in one way, or another.

 

Well, time can be harsh, but yes, I can see the wise words you’ve spoken, but viewing the future is never easy. I always see my own destruction in my head, . Avoiding potholes, sometimes I think by over worrying I may be pulling myself into some potholes, ; I worry that I did something wrong, so sometimes I pursue the possible problem but, in the end, I think I make things worse by inquiring, and maybe think that I should have left it alone. Inside, I know that I couldn't help but worry if I am not able to confirm what could be wrong first. Other times I think that I shouldn't pursue it in case I make things worse, such as rush people and such. I think I just need confirmation in the end.

 

Today I had to go to town for an eye-test and the person I was with had to go do something, so I stood in front of as shop waiting for them to come back (I made sure the window I was standing in front of was the one with the massive display preventing people behind me seeing me).

 

While I was standing there this bloke pulled his bicycle up to a place where people can lock their bikes, and he looked up and saw me looking at him, I looked away straight away, but after about 20 seconds I looked back in his direction (he was about 12-15 foot away) and he was looking at me and I don't know what he was thinking but he looked totally creeped out - like I'd offended him or he thought I was going to attack him or something.

 

All I did was catch his eye, I wasn't staring, I don't know why he kept looking at me with this expression of - well - it didn't look positive!!!

 

Maybe the way we act is the problem - I'd need someone to film me to see what I'm doing as I'm not always aware of what my face looks like

 

My mum said that you sounded just like me when you said that. As I said, I worry over things like that too, that is why I wondered whether I acted right or not. I worried that I missed out a hidden message, something that I perhaps should have picked up on, but was too scared to think.

 

I always want to confirm that I am not making a mistake, as mistakes, to me, could prove fatal, as I don’t want to be on the bad side of anyone. After losing my secondary school friend, it has really shown me what happens when things go wrong, so I don’t want to make that same mistake again. I also don’t want to miss out on something that may present itself, but tackle it in my own way.

 

I know - you described it very well - do you respond too late too? And then it feels weird cuz your out of synch. I say things that don't make sense sometimes too cuz I misunderstand or mishear people.

 

I have even walked past members of my family in the street and not seen them because I'm so focused on doing what I'm doing and getting it over with as fast as possible - people have literally had to jump out in front of me to make me see them - I've also offended people this way (the people who didn't know to jump in front of me).

 

I aint no great positive person - but it can get better - it takes work and hell and effort - but it can - just remember that when things get you down.

 

About taking too late and saying weird things, well, when my anxiety is so high I jump straight for my mum, if I don’t then, depending on the subject and the complexity of it, I may just say something like, “uh…uh…uh…I’m sorry, I’m not sure” or I respond with a response but I get very shaken up.

 

Social wise, I am always worried whether I may make things worse when it comes to worrying over whether I am doing the right thing or not. When writing I worry I send too much, then I worry that the other person is too shocked to respond to me. Ever since I began writing to my old primary school friend, to you and others on this forum I felt “Am I saying this right? Do they understand me? Have I offended someone? Did I write too much? Am I overwhelming people?” I feel like I need to confirm that what I am saying or doing is not wrong. I have always badgered my mum over my worries in social interaction ever since writing to that old friend. I can’t help it, making a mistake is something I desperately wish to avoid, as I don’t want to be on the bad side of anyone. Being on the bad side of someone is something I would feel awful about if it happened, so I try to confirm I don’t make an error, but by pursuing it, I worry that I may metaphorically shoot myself in the foot in the process.

 

I can just picture wanting to be over and done with whilst ignoring everyone in your path, I can relate to that very well. I think by being shaken up when responding to someone, puts me in that state as well. I just want to run, escape through the nearest exit. When I did my exams down in my living room with my speech and language therapist (SALT), with her back facing me, as the invigilator and my mum was allowed to be present, I was looking at the door, wide open, and at the SALT to see if she may see me out of the corner of her eye. I felt like if she turned around even once, then I would shoot up those stairs faster than lightening. So I can completely understand how you feel.

 

Not being a positive thinker, well, for me, I think that can probably be obvious from my messages now, , but seriously, after that incident at school it had really shaken my trust to its core, and especially after the pain that the local authority and such are causing and have caused my mum and me.

 

Metaphors don't work for everyone.

 

Can't help you much there other than potentially thinking of advice for specific things - but even then I don't think there are definite ways to go about things - some people get loads of help for the smallest thing - and then the people who need it are trapped in their lives and nobody listens. It's a rubbish system. All you can do is not give up - keep trying - even thought its wearing and tiring and disheartening... which it is - it sucks the life out of you - but I don't know about you - I aint no quitter - not until I've given it everything I've got - especially when it is something that shouldn't be quitted and your quality of life comes under that rule - don't quit - take a breather, get your mum to help you pull your ammo together again and try again and hit 'em with the new things you've learned - needs a lot of googling

 

I can fully understand, we as the people that are trapped behind our houses and bedroom doors are not seen. We get ignored because we are too ‘difficult’ to understand and help. Helping without understanding will only hurt us, I can see that would so easily be the case. We are human beings just as much as the next person, the pain we go through is real, we can’t help being in an awkward situation. It is not our fault we ended up like that, for me, it is the trauma that I went though that caused that to happen.

 

I hope you read these next paragraphs with an open mind, the trauma the system has caused me, my mum, and my sister is major.

 

The system is worse still when your family had been split up when you were a baby. This is exactly what happened with me. Social services, very unfortunately, got involved and split us up. As it is very painful and difficult to explain and something that if not read with an open mind could be misunderstood, at this moment in time, it is too difficult and painful to talk about.

 

Social services are in this 139a document, and there is no way I am signing something with the very people that destroyed my family, on all sides, when I was younger. Growing up I have learnt on many occasions to avoid them. They tried to get my oma (grandma in German) to sign a document, that was incorrect and had she not refused stating that my mum and my auntie needed to be present, then she would have been given a care package that didn’t fit her needs. I even heard, when oma was in hospital, someone in the same ward said to avoid social services after the fact that they never provided their great grandma with a bath lift, when they should have. All these experiences and more taught me to stay 100 feet away from them as possible. I do not trust them in the least, they cause more harm than good in my opinion. If there is anyone else on this forum that has a support worker or social services involved with them, then that’s fine for them, but not for me. I will never want to step anywhere near anything they are involved in, as I don’t want my life to be destroyed as well. Whether they mean to or not, I believe they are far too rough and never consider the person they are talking to, just to fulfil their objectives as fast as possible.

 

I had talked to a connexions advisor, one that had worked in the social workers department, from behind my bedroom door once. She turned around and said something like, “Don’t you want to be educated? Then you should go to college”, she knew my problem, and that no one came to help me. I explained my difficulties nevertheless, she turned around and asked the same question again, and over and over again, until I said something like, “I’m sorry, but I have already answered you, I would only go over the same thing time and time again otherwise” Then she turned around and said something like, “We don’t always get what we want”, I thought, “You are a connexions advisor, you’re supposed to help by understanding and finding a solution that works for the young person. You’re not supposed to kick us in the face, saying that you have to do this whether you like it or not” That is the cruelty that I have felt from the local authority first hand, now if I have to go out and willingly accept that, then I’ll never make it in life. I am supposed to be getting help to get education up to the age of 25, as I am classed as a disabled person. I am not getting that help, as they are not seeing the reasons why I can’t sign the document. I was taught behind my bedroom door, I cannot jump into a situation I cannot cope with and they’ve known it since my statement of educational needs ended. How do they expect me to go to a college after that and the trauma that got caused to me at school?

 

My mum fights and fights and the local authority never understand, sometimes I think they enjoy making things worse. I am sick of it, I feel like the system couldn’t care less. I am reaching out this way, as it is my way of fighting, my way of trying to find help, whilst my mum tackles the other side. I also don’t want to watch as my fate turns dark, I want to fight, in my own way.

 

That's a shame about your cousin and you not being able to get on - it happens sometimes - focus on what you are doing, just because she's doing better in her life doesn't mean you are less of a person. We each have our own way through things Ichigo, and we all take different amounts of time to learn.

 

It will be my 21^st birthday soon, and I feel too worried that that pain will be brought out stronger if I saw her, so I will be going down to oma’s on my birthday with my mum, alone, without my cousin there. I don’t think I could cope with seeing her there; the pain will grow again as soon as I looked at her face or heard her voice. I feel no ill feelings towards my cousin but the pain is too great, I feel that I need to achieve something worthwhile before I am able to see her face again. I could have thought that coming onto this site would be one way, but I really don’t know if that is enough to avert the pain. The pain is strongly positioned in education, and I know the difficulty I would have pursuing the reason for that depression. If I saw her face and voice, I think I would scream inside, head upstairs in oma’s house and cry on the bed, out of pain.

 

Yep, I'm totally for taking the little steps - and believe me I know how frustrating that is - it can feel very demeaning taking little steps when you see people everywhere else leaping about with ease - I guess it's important to focus on your own progress sometimes - but if you find someone who inspires you, learn as much as you can from them!

 

Progress.

 

You struggle on, it feels like you are getting nowhere, and because you aren't satisfied with your progress, because the bar moves, the goals change, there's always something else to learn, do, understand, something that is hard, never good enough. So many things it feels impossible. Everything is so ###### hard.

 

And this is the most honest truth I can tell you about progress...

 

One day you look back and see you have made progress - when that happens, for god sake acknowledge the achievement, give yourself credit and be pleased that even though you have far to go, you have achieved something,

 

If you don't do that you'll end up like me - I have next to no sense of achievement, nothing is good enough, I'm never satisfied, I'm dismissive "so I did that - who cares? I still have to do another thousand things" - it isn't healthy.

 

So when you take a small step say "yeah! I did that" just for a moment before you start looking for the next thing. It's really important!!

 

Where can I find someone that could inspire me, who else has been behind their bedroom door, and managed to succeed?

 

Acknowledging my achievements, well, I can understand that, I don’t think I fully thought about them much. I am always about self improvements, I never look at the achievements I’ve made, if I did, I fear I may become stagnant and never get anywhere. I thought there was a saying that pride comes before a fall, I thought that was the same.

When it comes to social interaction, then I suppose coming on here and talking to that old friend are achievements in themselves. Yes, I can see what you’re saying, but the steps that may come up in the future seem a lot bigger than those I have already walked across.

 

If I looked back on the educational and general changes then it would be the fact that I lost a lot of weight, became skilled at photography and such, but bragging and boasting about achievements is not me. I always want to improve myself, learn something new, I don’t like to stay on one subject, I like many subjects, and those that I am not skilled at I want to learn to be able to do something else. In some respects I’d want to be a jack-of-all-trades around the subjects I am interested in. I don’t want to learn many things only to be skilled at nothing, but I do want to do some things that I feel enjoyment out of.

 

Best

 

Darkshine

 

And sorry for taking so long again

 

Thank you for replying to me, I understand that it takes you some time to reply, don’t worry, I can understand, . I just hope I’m not overloading you, .

 

Best wishes

Ichigo

[Concentrating on developing skills]

LancsLad

 

Well, whether she is able to help or not, it is a very kind offer, thank you, .

 

Best wishes

Ichigo

[Concentrating on developing skills]

LancsLad

 

Yes, I think Japanese is definitely difficult to learn alone, there is no question. To find someone to help learn Japanese certainly may help. From the website that darkshine suggested with the ten essential tips to learning Japanese, it stated that to find someone that can speak Japanese to talk to was important from the beginning. There were also those in the comments underneath on that website that stated the same thing helped them.

 

To be able to find a way to achieve one of the skills I’ve wanted to is definitely motivating, it’s true. Wow, when I started writing on this forum, I never expected things to go this quickly, but it is certainly encouraging, .

 

I understand that she may not be able to help me, but if it is possible then the concept sounds interesting. Thank you very much for thinking of my problems and offering a solution, . That is something that definitely sounds appealing, and I think I’d be willing to try, as long as I would be able to explain my difficulties to her so that she can understand the obstacles I may come across.

 

I am also practically in the basics when it comes to learning Japanese. As I said to darkshine, I only managed to pick out the odd word or two in the animé and music I watch and listen to. Technically, from listening to music, I mime the words, so I suppose that may help with pronunciation.

 

You say that she may be able to support me in some way, what ways may she be willing to help me learn Japanese?

 

Best wishes

Ichigo