This is my experience, and I'm writing it at a time when I don't feel good, but I just felt like I needed to say this, and I needed to say it where people might understand. I haven't posted or commented on this forum for over three years, for which I'm very sorry.
This is being an Aspergirl:
1) it's not being diagnosed until you're 20 (and that's comparatively young I think) because everyone looks for the traits of Asperger's that are recognisable in boys, and no one thinks that a girl might be struggling just as much, even if in a slightly different way. No one sees how hard we have to work every day of our lives to seem 'normal'.
2) It's being excluded and bullied to some extent at every school, childminder, club, or university you go to.
3) It's loneliness
4) It's the toll of all that becoming an eating disorder when you are 13, that still plagues you at 24. It's being hospitalised for long periods where people don't understand your meltdowns, and simply don't understand you...at least at first (I have met some really good mental health workers in my time).
5) It's being asked by a nurse: 'why do you have anorexia, were you abused?', replying 'never', and not being believed -- because, surely, surely, there must be a terrible trauma in your life to want to punish yourself every day. It's the guilt you feel when you know that there is no tangible reason for your difficulties, and then the realisation that yes, there is a trauma. Your trauma is that you have lived your whole life not easily understanding or being understood by the world around you; and it's the terrible strain of trying to navigate a world that bewilders you.
6) It's being naive. It's suffering sensory overload.
7) It's being told in class your whole life that you talk too much, interrupt, are too intense.
8) It's trying to explain, after you make a blunder, through the uncontrollable tears, that you never mean any harm.
9) It is not a lack of empathy. It's aching after everyone you know and don't know, constantly. It's like George Eliot wrote: 'if we had a keen vision and feeling for all human life, it would be like hearing the grass grow, or the squirrel's heart beat, and we should die of that roar that lies on the other side of silence.' (may not be a perfectly remembered quote)
10) It's constant, constant anxiety. And quite often, exhaustion and sadness.
11) It's feeling you are faulty, bad and wrong.
This is a very negative list, but I'm feeling bad right now. I do have amazing parents and, over the last few years, some truly brilliant and unusual friends. I'm lucky to have always been loved by my dedicated and patient family.
I empathize with all you say. Except for being a woman statement and having good friends and family.
I've just woken up totally exhausted from last night's nightmares and worrying about the future.
I'm so sorry you don't have a good support network. I hope the support on here helps a little. Mostly, though, I hope you can find at least one or two people who just accept you as you are and, in fact, value you for who you are. I hope you manage to have a better day today and a better night's sleep tonight. The future is so hard to know and control, but I hope things work out for you. Perhaps, hard as it is, it's best to focus on the short term, on meeting understanding people and on being kind to yourself. We are here for you :-)
I'm sorry you're feeling bad right now, but you've come to the right place to share it. Sometimes you just need to get it all out on paper (keyboard?).
I can relate to so much of this. I am as yet undiagnosed at age 30. My experience has been a lifetime of self-containment and self-hatred as to why I couldn't just "be", like everyone else, and then when I couldn't hold it in any more, explosive outbursts (but only in private or to my family - I would always hold everything together at school somehow...well, most of the time. I was always very aware of needing to be "well-behaved" at school.)
That said, I've lost count of the number of parties/nights out in my late teens/early twenties where I would end the night crying and just wanting/needing to go home. I thought I should go to parties as that is what everyone does, but they weren't good for me. I thought people would think I was a misfit if I didn't and I thought that if I went to enough I would somehow "get better" at them and feel more confident, which, needless to say, didn't work! Looking back I wish I'd realised it's ok to socialise in ways that fit me better, but I thought I had to do what everyone else does (although it's not everyone else really, just my idea of everyone else).
Then an eating disorder in my mid-twenties (but the doctors never noticed, and once even complimented me on how I managed to stay slim! I was always going to them thinking I must be depressed or something because I never wanted to see people but they didn't put two and two together. I suppose I'm not too good at recognising or explaining how I feel. I still struggle with food and it is a huge source of anxiety but it's getting easier.
I was fortunately never seriously bullied but I think I have been my own relentless bully, always telling myself I am wrong/odd/incompetent. This as well as trying to keep up with the most high achieving people I knew led to burn out in my late 20s and I now lead a much quieter life (saying something, as it was pretty quiet before) but that is how I like it, overall. I still struggle but I accept myself much more and I wouldn't really want to be anyone else, despite what I sometimes say.
I suppose what I am trying to say is that I am sure you have a lot of great things about you, despite (or even because of) the difficulties you've faced. I hope you will be able to see them when your current mood lifts. And as frustrating as it is to not have your difficulties picked up on and I 100% feel the need to vent and get angry about this kind of stuff, I am sure you will find contentment with yourself. You've got six years on me - if it's anything like me, those six years can be life changing.
There are bad days (weeks/months...) and much, much better ones. Ride out the bad times and it will get better.
Thinking of you.
What a lovely reply. I'm so so sorry you've struggled so much too, but I'm glad you're starting to accept yourself more. If your reply is anything to go by, you are clearly a very kind and compassionate person. You definitely deserve to be at peace with yourself and find happiness in whatever ways work for you. Thank you, and thinking of you too.
Oh, and I'm sorry that you never got any help with the eating disorder. Professional understanding of both eating disorders and AS can be so patchy. I'm really pleased and proud of you for managing to make progress despite that lack of support, but I also wish you had had/could have help as you tried/try to get better.
I just wanted to message and say as a woman with ASC, I totally hear you and pretty much everything you write I can relate to and connect with. I am just starting out on getting my head around what it means to be autistic but I really hope you find some light/ relief/ happiness soon. You're not alone.
Thanks so much. There is light in my life, definitely. My family are lovely and recently I've had some good friends; and books always exist! And cats! I'm objectively lucky, it just feels a struggle still sometimes. And the last few weeks it's got to me especially I think.
I'm so sorry you've had similar experiences. I really hope you find ways to move through the world with an understanding of it and others, and most importantly an understanding and acceptance of yourself. I hope you too find happiness, relief and light. Thank you so much for your kind and thoughtful reply. Take care.
Hi Lydia - you have the same name as me!
Your list has many very relatable points. I was only recently diagnosed and I am still trying to absorb everything.
I read somewhere that a lot of women with autism end up with eating disorders and are only treated for that, instead of addressing the autism itself.
Also - I bought an amazing shirt with a cat on it today. Cats really are great :P
Hi Lyddybird :-). I like your username! I hope the diagnosis helps you make sense of things a little more clearly. Thanks for your reply, and I'm sorry you can relate to so many of the difficulties...but I suppose now we both know we aren't alone. And yes, cats forever hehe!
I'm quite a bit older than you but I relate to everything you've written. Life is really tough when you don't feel you understand the rules while everyone else seems to. I'm glad you have a good support network, that's so important. I wish you well.