Newly diagnosed and annoyed

I'm 34 and was diagnosed as autistic about 3 months ago.  I have not received any help or support at all other than being enrolled in a support group that was less than useless. It was essentially a group of people sitting around saying the stuff they struggle with. I already know what I struggle with , I want to know what I can do about it.

Even this website is useless unless you need a carer or something. If you manage to work full time, despite the fact it makes you horribly depressed and anxious all the time, you're expected to just deal with it. There is no help or support in place at all.

I'm fed up with struggling, I want to know what to. I'm beginning to think that getting a diagnosis was a massive waste of time, it hasn't changed anything. I mean, at least now I know why I've been having trouble all my life, but I'm still no closer to actually getting any help.

I'm genuinely stuck. I've been told that masking is part of the reason that I struggle so much with my mental health. But what on earth am I supposed to do? Drop the mask and be unable to function in "normal society "? 

Any help/advice appreciated 

Parents
  • I don’t blame you for having to wear a ‘mask’ out there, but I’ve never been able to cope with it myself because of my difficulties, :(. Yes, I’ve heard of people on the spectrum have been able to ‘mask’ or ‘pass’ to ‘fit in’ I’ve never been able to do that, -_-. I don’t know whether its because of my PTSD, or because my conditions are worse. I can’t cope in a workplace because it reminds me constantly of the traumas I went through at school. I couldn’t cover my difficulties, no matter how hard I try. I wish I could, but I know it’s impossible for me, :(. I don’t know you’ve managed to make it out there with your difficulties. You certainly are a braver person than I am, >.<;. I hope you’re able to find the help you need, I hope we both can, :).

    I can relate to you saying there is no help and support for us out there, and I agree also that the governments, now and in the past, do not care about us and our difficulties. They may say they do, but they don’t, -_-. Most, if not all, of the mental health ‘professionals’ have no idea about about autism, or it’s related conditions. It’s not even mandatory to undergo even the most miniscule training in autism, and more to do with severely autistic learning difficulties, which we are not, :(.

    I’ve not been able to write to people who’ve been able to ‘mask’ and ‘pass’ like that myself, and a lot of it has to do with a combination of things, not least of all my PTSD. You see, whatever autism may be, your traumas will always remind you of the pains you’ve been through. I’ve heard of this idea of ‘masking’ or ‘passing’, but I could never carry out such a task myself. The difficulties I’m affected by are too powerful to quell, and too existent for me not to experience an emotional meltdown by a neurotypical’s careless words. I have tried to in the past at certain times across the internet, but it’s always ended in failure, :(.

    No CBT treatment will be able to help my conditions. The only thing I know will have a greater chance of success is being able to write to people who can understand where I’m coming from, and share our experiences, and perhaps help to support each other that way, :). It’s the best strategy I’ve felt would have the greatest chance of success, because being able to relate to someone can help give you the strength to make it through each day. That’s my viewpoint on life, for what it’s worth, >.<;. You’d need understanding friends who would be willing to stand by you and support you both when you need it the most.

    I’ve been on many ASD forums and websites, and I know from personal experience that abuse seems to be common place, even among autistic individuals themselves. I’ve been attacked, my mother has been attacked, and all I’ve ever wanted was to be able to socialise in an environment I thought I felt safe in, the internet. The outside world can be just as brutal, because you have to face people in person. On the internet, and in the physical world, you have no idea what may lie behind a person’s disguise, which in turn, increases anxiety and tension, causing people to become hostile, and the internet can quickly turn into a battlefield.

    Sometimes, I don’t even have to tell anyone I’m autistic, because they can tell from my writing how different I really am, :(. I am in both verbal and written form, verbose, but how many people around my age of 27 do you think write the excessive amount I do? You can’t even imagine how small the number really is, unless you’re also verbose as well, OTL.

    There have been people that have simply written one liners to me, (just a random name with no relevance), ‘Hi. I’m Ashley and cool :)’, and I’m expected to say barely anything, but what do I do? I write practically an essay in response, and do you think they decide to write back? Well, it depends on the person. Most of the time, they’d ignore me, or at the very least, attempt to write back, but before long, slip into nothingness, OTL. Either that, or I can’t cope with the PTSD ‘triggers’ they’d cause, resulting in further meltdowns. It either became too unbearable for me, or they couldn’t cope with what I was saying, -_-. I can’t shut off my traumas, no matter how hard I may try, >.<;. I feel I need to find people that I wouldn’t need/have to ‘mask’ or ‘pass’, to fit in, because I know I can only be be myself, :(. I can’t pretend my difficulties don’t exist, they are too powerful, -_-. I hate lying to people, and I detest communicating with neurotypicals who are ‘shut off’ from the meaning of what our conditions mean to us. People who are close-minded aren’t always easy to spot, unless you can recognise the signs, -_-.

    I never wanted to imitate neurotypicals, because personally, there are aspects of life which I’ve only been able to understand because of my autism. I have learnt from personal experience, that there can be demons lurking behind certain neurotypical’s disguises, >.<;.

Reply
  • I don’t blame you for having to wear a ‘mask’ out there, but I’ve never been able to cope with it myself because of my difficulties, :(. Yes, I’ve heard of people on the spectrum have been able to ‘mask’ or ‘pass’ to ‘fit in’ I’ve never been able to do that, -_-. I don’t know whether its because of my PTSD, or because my conditions are worse. I can’t cope in a workplace because it reminds me constantly of the traumas I went through at school. I couldn’t cover my difficulties, no matter how hard I try. I wish I could, but I know it’s impossible for me, :(. I don’t know you’ve managed to make it out there with your difficulties. You certainly are a braver person than I am, >.<;. I hope you’re able to find the help you need, I hope we both can, :).

    I can relate to you saying there is no help and support for us out there, and I agree also that the governments, now and in the past, do not care about us and our difficulties. They may say they do, but they don’t, -_-. Most, if not all, of the mental health ‘professionals’ have no idea about about autism, or it’s related conditions. It’s not even mandatory to undergo even the most miniscule training in autism, and more to do with severely autistic learning difficulties, which we are not, :(.

    I’ve not been able to write to people who’ve been able to ‘mask’ and ‘pass’ like that myself, and a lot of it has to do with a combination of things, not least of all my PTSD. You see, whatever autism may be, your traumas will always remind you of the pains you’ve been through. I’ve heard of this idea of ‘masking’ or ‘passing’, but I could never carry out such a task myself. The difficulties I’m affected by are too powerful to quell, and too existent for me not to experience an emotional meltdown by a neurotypical’s careless words. I have tried to in the past at certain times across the internet, but it’s always ended in failure, :(.

    No CBT treatment will be able to help my conditions. The only thing I know will have a greater chance of success is being able to write to people who can understand where I’m coming from, and share our experiences, and perhaps help to support each other that way, :). It’s the best strategy I’ve felt would have the greatest chance of success, because being able to relate to someone can help give you the strength to make it through each day. That’s my viewpoint on life, for what it’s worth, >.<;. You’d need understanding friends who would be willing to stand by you and support you both when you need it the most.

    I’ve been on many ASD forums and websites, and I know from personal experience that abuse seems to be common place, even among autistic individuals themselves. I’ve been attacked, my mother has been attacked, and all I’ve ever wanted was to be able to socialise in an environment I thought I felt safe in, the internet. The outside world can be just as brutal, because you have to face people in person. On the internet, and in the physical world, you have no idea what may lie behind a person’s disguise, which in turn, increases anxiety and tension, causing people to become hostile, and the internet can quickly turn into a battlefield.

    Sometimes, I don’t even have to tell anyone I’m autistic, because they can tell from my writing how different I really am, :(. I am in both verbal and written form, verbose, but how many people around my age of 27 do you think write the excessive amount I do? You can’t even imagine how small the number really is, unless you’re also verbose as well, OTL.

    There have been people that have simply written one liners to me, (just a random name with no relevance), ‘Hi. I’m Ashley and cool :)’, and I’m expected to say barely anything, but what do I do? I write practically an essay in response, and do you think they decide to write back? Well, it depends on the person. Most of the time, they’d ignore me, or at the very least, attempt to write back, but before long, slip into nothingness, OTL. Either that, or I can’t cope with the PTSD ‘triggers’ they’d cause, resulting in further meltdowns. It either became too unbearable for me, or they couldn’t cope with what I was saying, -_-. I can’t shut off my traumas, no matter how hard I may try, >.<;. I feel I need to find people that I wouldn’t need/have to ‘mask’ or ‘pass’, to fit in, because I know I can only be be myself, :(. I can’t pretend my difficulties don’t exist, they are too powerful, -_-. I hate lying to people, and I detest communicating with neurotypicals who are ‘shut off’ from the meaning of what our conditions mean to us. People who are close-minded aren’t always easy to spot, unless you can recognise the signs, -_-.

    I never wanted to imitate neurotypicals, because personally, there are aspects of life which I’ve only been able to understand because of my autism. I have learnt from personal experience, that there can be demons lurking behind certain neurotypical’s disguises, >.<;.

Children
  • Thankyou, Bushido, it's is really good to read about this from the perspective of someone who is unable to mask. There have been periods of my life when I couldn't mask, but those were only ever short-lived and forced upon me by burn-outs and mental illness. Reflecting back on those times, what you have said makes a lot of sense to me. It's not until recently that I've seen how desperately trying to rush back into my usual masking behaviour each time, largely because other people had come to expect it, has been a huge amount of effort for very little return. Masking seems to ease the way in the short-term, but it prevented me from admitting to my mental pain and asserting my needs, leaving me unable to truly make any progress with either my psychological problems or life in general.

    I feel I need to find people that I wouldn’t need/have to ‘mask’ or ‘pass’, to fit in, because I know I can only be be myself

    Yes, that is undoubtedly the only real solution, whether we're unable to mask or struggling under the weight of masking. I have been very fortunate to have found a few people who have been accepting of the "real me" that I'm slowly exposing, and for most of them, my autistic traits have been no more disturbing than the symptoms of acute mental illness that they have seen in me many times over the years.