Help :(

Hi

Could someone please give me advice, I don't know what to do any more. I'm feeling very lost and alone. 

I'm trying I really am but nothing works. When I try to share about the autism no one understands and people give up. They think I'm rude and uncaring because I struggle to build conversation and to communicate. They always sit there and tell me what I need to do and say to build conversation and to build relationships but when I try to explain to them why I'm struggling with it, I'm told I'm just feeling sorry for myself.

Christmas was tough. My own family have rejected me so I was staying with my godmother, her whole family was over, I didn't know these people and they certainly didn't come to spend time with me. The noise was so crazy, I just had to excape and I think that was wrong somehow. And then Christmas lunch, I didn't think I was going to get through it. It was so loud and voices from every direction, it really hurt.

Why does my head hurt so much when I try to do conversation?

Why doesn't what's in my head come out correct or with the right words?

Yesterday we had made a plan that if there were no trains, my godmother would bring me home. She changed the plan and said I was to wait to today to get the train. Last night she said when would I be leaving and I said whenever, like whenever was suitable. I must have missed something because she turned not nice and went into the kitchen with her husband and started talking about me. When they came back in the room I went to bed and I got up and left the house. 

Now I don't know what to do.

I'm running on empty. Why do people just tell me all the things I do wrong? When will they say something nice? Why do they always want to pick a fight? Why do people even send horrible emails? Or call me a retard in the street? 

Why won't my brain work so people aren't angry with me? 

  • Sounds like your sensory difficulties have more to do with complexity, both visual and hearing, than just volume of sound.

    In the social gathering for christmas at your godmother's you say the voices were from every direction. So when in the centre of a social gathering you find it difficult when different sounds come from many directions.

    Are you any better staying to the side of a room with people in it, so the sound comes from one direction?

    Do you always have difficulty attempting conversation, or are there times when it is harder? Are you able to enunciate the words you intend when it is fairly quiet? Is it when there are a lot of other conversations around you, or other competing sounds that you find it difficult to form words reliably?

    When you say you are really trying and nothing works, when you are trying to share your autism, is that when talking to one other person quietly? Or is this in a situation where one or more people are having a go at you about your difficulties, asking for an explanation?

    When your godmother was suggesting changes to when you would travel, was this done quietly, or in confrontation, in an argument?

    These distinctions are important. If you are having difficulties even when things are quiet you may need help just to get from one day to the next. If however you get into difficulties when under pressure, too many other people talking at the same time, people confronting you etc. then you need to manage these events more carefully or avoid them if you are able.

    With the last part of your first posting, and your second posting you are describing people's reactions to you, which seem abusive and aggressive. It is important to think about the situations where this happens. If these events happen when you are going about quietly that suggests people are taking an issue with your appearance, with things you are passively doing that attract attention.

    If you are significantly affected by things going on around you, that you react by doing things you wouldn't normally do, people's responses might be to your reactions. Are they behaving like this because you are showing distress? Are your responses to people around you disturbing to these people that it causes them to react the way you do.

    You might be puzzled by all these questions, but if others are to help you unravel this, it is important that anyone else responding to your postings knows whether these things happen when you are not doing anything to draw attention to yourself, or when you are in otherwise quiet situations.

    Or, whether you are agitated or distressed when these things happen, and reacting in a way that causes others concern.

    Or that you are affected in this way when there is a lot going on, conflicting sounds and activities.

    If you could say a bit more about the situations you are in that would make it easier for others to offer advice. Sensory overload is a complex and very individual phenomenon, so everyone has different experiences of it.

    If you can give us more information about the circumstances when these things happen to you, others may be able to recognise and draw from their own experiences.

    I take IntenseWorld's point that people slamming their buggies into you might be aggressive chavs. But I'm just wondering if these are buggies used by elderly/disabled (like Shopmobility), or people who loads of money and just decide to drive buggies rather than walk? Or are these buggies push chairs with toddlers in them?

    As IntenseWorld says most mothers with push chairs are likely to be careful with the children in them

    But if we are talking about motorised buggies, they are aggressive to everyone. Nothwithstanding some users of motorised wheelchairs/scooters or "buggies" are responsible, but the majority of them are pavement hogs. Even some genuinely disabled users are like loonatics once behind the wheels of one of these. A very common injury is people getting their feet run over (as they are heavy and can injure).

    So please have a think about the various situations you are in, and gave us more to go on - we might be able to help more.

  • Can I ask what the reasons were for people spitting and swearing at you were?  Was there a prior exchange of words, or do you live in a small place where everyone knows everyone else, or where they neighbours from your street etc.?

    As autism is an invisible disability as such, there wouldn't be anything very obvious to draw you to peoples' attention usually.  Unless you are hand-flapping or spinning or making any noises, I would have thought you would be able to go on your way without trouble.  Some morons will home in on anyone displaying the slightest difference unfortunately, which could be due to wearing clothes that they don't consider fashionable, or the "right" hairstyle etc.  People with ASC maybe pay less attention sometimes to those sorts of things, which might draw some idiots' attention.

    People slamming buggies into you sound like aggressive chavs.  No decent parent would do that just for the sake of their poor baby/toddler letalone to attack someone with it like a weapon.

    There are plenty of armchair philosophisers out there, so there will always be people who tell you that you are doing something wrong.  The trick is never to ask them, never show that you haven't got a clue about something and to be confident in your choices.  Relatives however are a different matter and will never resist giving you their tuppence worth no matter how unwelcome.

    I have had some anti-social attention from people before, I don't know how it would compare to anyone else's experience as there are so many awful things going on everywhere, you only have to read the newspapers to see that.

  • Thank you for all your comments, I really value your honesty.

    Do any of you have these issues with people? They're always telling me what I do wrong. They whisper behind my back. In the street I've been spat at, sworn at, pushed, called a retard and buggie owners slam their buggies into me.

    I also have dyspraxia which means coordination isn't great and these buggy owners seem to think they have priority over the pavement and when I can't get out of the way quick enough they slam their buggies into me.

    Anyone else have these problems

  • Hi Tigerlily, thanks for your post. I find writing stuff down helps to get things into perspective. You're very good with words. I've had similar Christmas experiences to what you describe but I'd avoid the trains just now as you could end up jammed in a carriage so tight you can barely scratch your nose for the crush. Your other replies talk about finding some space which can be difficult but gives you a chance to recover. Have you tried the "fake" reading trick? Pick a book (music, game or texting), find a comfortable spot around but slightly out of the way then retreat into your own space (inside you). People are usually much more accepting of of someone enthawled by a book and you save yourself from the anguish of hiding or running away. For me, much of the pain (and anger) is because I hate being "me" in a crowded situation. Being able to retreat allows me to unwind and see the "me" i'm friends with when I'm on my own. When I'm friends with mysekf again (well speaking terms) then I can cope much better with other people. 

  • We had a quiet Christmas by most peoples' standards, just the four of us, and yet I still had to remove myself after lunch for some quiet time and a nap upstairs.  It was just the TV on (and not on loud) but it all suddenly overwhelmed me.  I think it was a combination of the stress of Christmas preparations, staying up late to wrap presents so being sleep-deprived, and getting the lunch sorted.  When you are tired, sensory issues are worse and I felt like my head would explode if I stayed in the room a moment longer.  So I can imagine how stressful it was for you tigerlily.

  • I am similar to you tigerlily, I hate being in that kind of environment, for me it's about personal space, personal noise, personal conversation and when these are influenced by others then I just don't want to be there.

    I never understand why people have to shout and scream so much and mostly about things so trivial, it's like everything is a scene from Eastenders, mostly I avoid conversation but some people always try to get you to join in and often put you on the spot then consider then response as rude especially as I have difficulty like you saying the right thing, half the time they never let you finish speaking anyway so what is the point in asking you things ?

    Like Intenseworld I find that the only way to is avoid it all, at least that way I am in control of my own environment, this does not mean you have to be alone, but that you have to be more selective with those that you mix with and try to mix only with people who understand and have patience.

  • I'm so sorry you are feeling like this.  Sadly, there is no magic cure for people that are intolerant.  Autism awareness is the only thing that can improve peoples' perceptions and attitudes.

    Family usually treat close relatives worse than they would treat strangers, "familiarity breeds contempt" as the saying goes.

    I am presuming they are all aware that you have an autism spectrum condition?  Perhaps you could send them/leave laying around information leaflets about autism, explain to them that it's a neurological difference that is lifelong and because your brain is wired differently, no matter how much they tell you that you should behave a certain way it won't change you.

    I have found the only solution is to distance myself from people, which in itself is sad but you have to do what you need for your own anxiety levels to keep yourself from slipping into depression.  You can be in a room full of people and still feel lonely.  Forcing yourself into situations for their sake won't make you happy.

    They need to know what autism is, how it affects someone and you need to stand your ground and tell them what you need and what you can't handle, so that in future, interactions are not so difficult for you.  Make them see that although it's an invisible disability, it still is a disability, and if they love you they will try to accommodate you.