Alexithymia and the problem with the question - How Are You?.

I was a kid who´d fall out of a tree and never cry. Winded, bruised, I´d get up and try and keep going, puzzled that I was winded or that a bruised limb wouldn´t move well. Emotionally, I had ´emotional fits´ several times a day when it was like a laundry basket of unprocessed, undifferentiated emotions would suddenly come to the surface, feeling I was eaten up by tidal waves. I had no words for these and couldn´t tell what moods were in there, what situations they´d come from, so I´d just rage at myself, biting, hitting, pulling my hair or race around in circles like a tortured animal.

I didn´t have functional speech but could recite advertisements, songs, lines from TV and had made up words. You could generally tell my mood from the style of verbage coming out, but I couldn´t. I had no idea how I was feeling. I lived in each moment and each moment was disconnected from the last. In the absence of knowing what I was feeling or how to express that through my face or body, I generally kept a one-size-fits-all smile ready because people seemed to prefer smiling people and I´d had enough abuse to learn it was important to be adoptable. By my teens I had functional speech but when my mother would ask ´how was your day´. Having no idea HOW my day and no ability to work out which information was relevant, I´d simply reel off litany style EVERY minute happening of the day. Ask how I was and I´d just walk off.

In my 20s, with a mosaic mind I couldn´t internally reason or reflect about myself. I needed a way to externally mentalise, to get it all ´out there´ in one cohesive whole so I could grasp who I had been, what I had felt. I did that through the writing of Nobody Nowhere, the first of my 9 published books with Jessica Kingsley Publishers. And whilst I came to understand my own ´autism fruit salad´ as made up of gut, immune, metabolic, mood, anxiety, compulsive disorders, visual, verbal and body agnosias, dyspraxia and dyslexia issues all in an autistic personality package, I had never heard of Alexithymia; an inability to tell physical from emotional sensations, name or easily describe one's emotional life. As one of the autism world's most prolific published authors, I've written extensively about the struggles to connect mind and emotion and realised I have written much about Alexithymia.

In Like Colour To The Blind I developed a technique called ´checking´ which used triggering to gauge emotions and their degree relating to various choices. It was wonderful. Finally, I could gauge my own emotions instead of relying on the ´artificial limb´ of stored theoretical ideas of ´what a person would feel´. But I still have great difficulty with that question, ´how are you?´ and I reply things like, ´no idea, I´ll let you know when I know´ or ´I don´t work that way, I´m busy just being´, or ´it´d take me a while, do you really need me to work it out?´. What a one-size-fits-all world, a world in which those with Alexithymia, which effects 85% of those with autism, must be invisible. So, maybe don´t greet me with ´how are you?´ My husband doesn´t. He tends to say ´hi. I had a good day today´ then just tells me about his. That works.

Donna Williams, Dip Ed, BA Hons

author, artist, singer-songwriter, screenwriter

http://www.donnawilliams.net

http://www.myspace.com/donnaandtheaspinauts