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.
Thank you for being honest. I totally agree about gender bias and how this leads to both missed and misdiagnosis. In fact, I feel this bias creates unecessary boundaries and fails to note that autism really has no gender. Im a Man in my late twenties who was diagnosed early last year, and whilst my journey will have some differences, I do understand that life is harder to negotiate when the world doesn’t understand regardless of who we are. The Fourms are a good place to say how things are and whenever contributions are made, they can help. I feel it’s really important that we build inclusive groups and learn from each other.
I hope your diagnosis is helpful to you. Thanks so much for your kind reply. It means a lot.