“ I looked at the world and the world looked back at me for 50 years. Then I was diagnosed with Asperger’s Syndrome and suddenly everything changed”.

998805_528726673888806_189625575_n

“I looked at the world and the world looked at me for 50 years. Then I was diagnosed with Asperger’s. Getting the diagnosis had a profound effect. Over the following weeks, a thousand shards seemed to rush together to form a single mirror. I could see myself at last. There were no distortions, no ‘missing pieces’. So I could stop searching for them.

If you’ve ever beaten yourself up about your ‘failings’ you might begin to comprehend the sense of relief. After a lifetime seeking that elusive ease that other people seem born with, I suddenly realized that they were born with it, and I was not.

I’d often watch people in an attempt to work out how they’d go from being strangers to being close. I remember seeing two people sitting on a bus. He glanced at her, then reached up and pushed a strand of hair off her face. She looked at him and smiled. How does that happen I’d wonder.

I’m told that when younger, my inability to read signals left a small succession of men feeling rebuffed and vaguely puzzled. I’m flattered and bemused. I hope they were good-looking.

Some years ago I was in a relationship. He had to practically club me over the head and drag me into the cave before I realised he was interested. To anyone else, that might have been a warning. But people with autism tend to trust what we are told because we don’t speak body language. I spent our first year together discovering how manipulative he was and the next three looking for an exit strategy.

1098119_10151923638169903_2089384885_nThere is a vast gulf between being alone sometimes and being alone in the bubble of aloneness experienced by many people with autism. I go out every day, to be among people, but do not try to engage with them. I sit with my book or crossword, conscious that I am being part of society. If someone took a photo of me in the coffee bar, you wouldn’t spot the Aspie. And I might not be the only one.

Social isolation is not just about having mates to socialize with. It’s true that if I go to the cinema I go alone. I eat alone. I go on holiday alone and when I get home, everything is exactly how I left it. But it is more profound than that. If I am ill, no-one will bring soup or take me to the hospital. At the end of a working day, there is no-one to talk to about the stresses or the highs. If I am anxious, I stay anxious. I have no friends I can call to cheer me up. I know nobody with a car. If I want to buy something bulky, I have to pay to have it delivered. Join a club? Been there, done that, learned new skills, went home.

I know all the things I ought to do and how to access information. I don’t require kindly advice – I simply can’t do it because I work full-time and just getting through the day is too tiring.

I have a parent and an Aspie sister and we form a good support group. We have other siblings, without Asperger’s. They are happy with their families, however I wish they would make some attempt to understand autism. Not for myself, but because they have children and their children are beginning to have children.

I have read books by other Aspies and trawled the internet forums. There is a lot of emphasis on young people with autism. I was never a young person with autism, as I had no idea I had it. I was a young person with problems. I am now a middle-aged woman learning for the first time to recognize my problems as Aspie problems and look for interventions. I have the problems, but there don’t seem to be any interventions available to people of my age.

So I review my life alone. No change there. There are problems I haven’t been able to rectify, but I know how to be kind to myself. When I get home, electric lights go off and I light candles. I burn oils because they calm me. I am learning how to slow down the chatter that runs through my head and I am looking for the key to a full night of sleep.  I might never be at ease with you, but I am more at ease with myself.

I have plans that are based on who I am, rather than who I think I ought to be. I spent my first half century trying to fit in and now I have stopped. If anyone questions my oddness, I tell them it’s because I’m odd.”

This amazing story which so aptly reflects the maze of confusing emotions and experiences  that so many women, who are diagnosed later in life  with AS describe encountering along the rocky path toward self-awareness, understanding and acceptance , was written by “Manda” .

 

 

Advertisements

29 thoughts on ““ I looked at the world and the world looked back at me for 50 years. Then I was diagnosed with Asperger’s Syndrome and suddenly everything changed”.

  1. this here…is the STORY of MY life….and, I got diagnosed at 43.

    the line, “I’d often watch people in an attempt to work out how they’d go from being strangers to being close.” was particularly of interest to me. That is STILL a struggle for me.

    I am currently unemployed, and looking for an appropriate job in my profession. That’s monumentally harder for an autistic. (something, of course, i didn’t know about before my dx)….

    I somehow did manage to get married…and that is also a struggle….

    For a book on someone diagnosed late in life….there’s john elder robison’s “Look Me in the Eye”.

  2. The sense of aloneness and isolation which you write about is, for me, the worst thing about having AS. I have no family, and so am alone both internally and externally. Life is incredibly lonely. I have some friends, but they have their own problems. Like you, I was diagnosed in middle age so for most of my life I felt like a failed ‘normal’ person.

    1. I share the feeling of being alone but its not solely because I have few friends. Its something deeper, a sense that even if I did have friends, I would never be able to develop a friendship in the same way that non aspies do. What I would therefore have is a poor approximation of friendship something I cooked up in my own head based on what I imagined other people meant when they spoke of friendship. What I mean is that I find that its impossible to truly connect with anybody in the world and thus the sense of loneliness is somewhat more profound. I also resonated with the author of the post when they said “I’d often watch people in an attempt to work out how they’d go from being strangers to being close”- I find myself doing the same thing in the same clinical way that I imagine Spock (from Star Trek) interprets relationships around him.

  3. A Tumbler blogger led me here. I think you’ve renewed my interest in continuing to learn about Aspergers. I’ve never been officially diagnosed, but when I was in my 60s I started reading about autism and Aspergers and found myself. Better late than never, but it would have saved me, and my ever-patient husband, a lot of grief over the decades. Too bad that my education came when I was already a widow. I would have liked for him to know that I really couldn’t help being the way I was.

      1. Thank you. It’s much easier for me to live with me these days. I’ve found that I’m quite happy living alone now that I no longer have family responsibilities, and I don’t even feel guilty about it. 🙂

  4. Hi, I self-identified myself at age 51 and received a formal diagnosis at age 53 (3 weeks ago in Phnom Penh). I am writing a book about late diagnosis of AS under contract with JKP, so I welcome interviews with autism experts and late diagnosed adults. My personal website is philipwylie.com.

  5. I’ve never had a diagnosis, but I’ve always felt that i don’t fit in. The more I read about Asperger’s – especially in women – the more I think this might be an explanation.

  6. I was diagnosed a year ago, I’m 42. I didn’t take it well at first but eventually came around. When I did it was like this bright spotlight was turned on, showing me everything in my life. So much suddenly made sense! My relationship with my mom was horrible. The constant questiin from her was “Why can’t you be like other kids?” The constant admonishment was “That wouldn’t happen if you acted like other kids.” But I wasn’t other kids, I was me. My first marriage couldn’t be saved and my second almost didn’t last past the first year. The biggest thing has been learning the language I need to be able to tell people what I need. I did find out that my friends thought I knew because of how I am and how I coped. I consider myself lucky because science fiction fandom is full of Aspies. I was just one more and people adjusted. I’m more comfortable with myself than I have ever been in my life…I feel free.

  7. I was diagnosed a year ago…I’m 42. What I didn’t realise was the reason I had friends is because science fiction fandom attracts Aspies. They all thought I knew so they adjusted anx accepted me just as I was. Now that I know what they knew all along I feel more free. I finally have an explaination for the years of my mother saying “If you acted like other kids you wouldn’t be picked on,” as well as so many relationship faliures. I’m learning the language I need to communicate my needs to others.

    I’m free!

      1. It depends on the country you are in Soylent Jude…. there are different pathways…….. You could contact your local Autism Support Center for information…. Ask for a referral from your doctor for an Autism Assessment…. seek a private diagnosis from a clinical psychologist……. there are many avenues…… the trick to it all is finding the avenue that is best going to suit you. Good luck.

  8. “I don’t speak body language.” – that seems so very accurate.
    I remember studying body language from books as a kid (one of the best ones still is Body Language by Julius Fast), then trying to ‘speak’ it, and always using it to troubleshoot people in face to face situations.
    A bit of troubleshooting, and a lot like using a foreign language.

Share with me......

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s