Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Alexithymia and the problem with ‘How Are You?’.


On Board by Donna Williams 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 and was shocked to read that it is common to around 85% of adults on the autism spectrum.  And there I was staring back at so much of my own journey and questioning how much we might sometimes be looking at Alexithymia and calling it autism itself.

According to Wikipedia, Alexithymia is believed to involve a transfer deficit between right hemisphere areas of the brain which process emotion and those in the left hemisphere which manage communication.  There is apparently a question as to whether this also occurs in those with a decreased Corpus Collosum, the ‘operator’ which transfers messages between the two brain hemipsheres, which has been found more prevalent in those with autism.  Interestingly, it is also found decreased in children who have suffered extreme abuse throughout childhood.  One might wonder how much more Alexithymic an autistic child might be if they also suffered such abuse.  Further, if, as Wikipedia cites, Alexithymics are more likely to develop substance abuse, certain personality disorders, mood, anxiety and compulsive disorders, eating disorders, even inflammatory bowel disease and allergies.  It is always possible that a parent with Alexithymia may require far more support to care for their children than a parent without this condition and that without that support an Alexithymic parent might be more likely to have children with the same or greater issues.

The Wikipedia entry for Alexithymia cites that a parent who either fails to or is unable to respond to their child’s facial expression and body language can cause the underdevelopment of this same neurological ability in the child.  Parents who themselves have Aspergers or autism who also have Social Emotional agnosia (and are therefore unable to spontaneously process facial expression or body language) may theoretically pass this same issue on to their child not just genetically, but environmentally at the neurological level.

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?’.  I could never understand why this irrelevant, alienating question gets used daily as a greeting.  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