In 1996 my first text book, Autism; An Inside Out Approach was published, in which I discussed strategies for meaning deafness, meaning blindness, lack of body connectedness and lacking simultaneous processing of a sense of self and other. To most people, that may sound like something from a Sci Fi novel, but in my world it’s just part of everyday life.

Yet why has it taken the autism world so long to recognise agnosia in those labeled autistic? For one thing, the fallacy that autism is one single thing with a mysterious unknown cause has kept the fundraising coffers full and the money spinners in business so the last thing they’d want is to recognise that some people might re having chronic autistic responses to a wide range of co-occurring agnosias.

I was 19 when my ex-shrink declared from across the room, ‘You have agnosia’. We’d evolved into a friendship thing and I guess in my years as her patient she didn’t have a shelf of objects in her room so had never really seen me handle them. But here I was with a rubber thingy in my fingers upon which was balances a hollow tube like structure which made a good sound when tapped. I had suddenly declared ‘this is a baby’s bottle’… probably fairly obvious to most given this woman had a toddler, but to me this mysterious structure was something of unchartered territory though it’s likely I’d encountered hundreds of them in my 19 years of life by that time, let alone grown up with one. But that’s visual agnosia for ya (semantic agnosia).

She also knew I’d had a panic attack too when a friend refused to speak to me on the basis I hadn’t waved back the day before when he’d waved and called hello to me. Apparently, I’d looked away, nervous of this odd stranger waving at me and unsure what such a person might want from me. But because I was a speechless mess when I came into her office, awash in snot and tears, somehow she’d missed the face blindness of prosopagnosia, because I was there because I was ‘disturbed’.

I’d let her do most of the talking and otherwise I’d stare out of the window, responding to trigger words, the rest like a stream of blah which often may as well have been in Japanese. But I caught on that shrinks, especially Freudians, seemed there was worth in talking about one’s mother, so I replayed that stored language tape and somehow we didn’t discuss the everyday stress of language processing disorder so usual with verbal agnosia.

Years later an educational psychologist tested my fingers. He wanted to know if I knew which he’d touched. I had been talking about poor awareness of pain, of being disassocciated from my body which I’d learned to care for as a pot plant, and how touch distressed me because I had little idea where I’d been touched and often felt like my body was wood. The test, it seems, was one for finger agnosia, a condition in which one struggles to tell which finger was touched and part of tactile agnosia.

In my second bestselling autobiographical work, Somebody Somewhere, I’d written that I’d finally felt both my hand and leg together, that previously I could only feel one or the other. Now I’ve learned that many forms of agnosia are recoverable to a degree and perhaps this is how I went from being an infant admitted for observation for deafness, no response to pain and self injurious, to being an adult who could understand 50% of words read or spoken, was only rarely self injurious and could actually attend to pain, more or less.

Exploring agnosia, I found the context blindness of simultagnosia, and the object confusion of associative agnosia. So that’s why I still confuse the garlic crusher and the can opener and why I can’t tell people are talking because I just see someone’s mouth moving making noise, then someone else’s but don’t realise they are talking TO EACH OTHER!

And I learned there are those who can’t recognise vehicles and I remember my frustrated mother hitting me because she had this face blind kid who couldn’t recognise anyone so would treat all as strangers or friends, and couldn’t identify types of cars even though her father owned a car yard. There were drive ins then and my family would go to them. I’d go to the toilet and get into three cars before my parents would spot me running from each and beep the horn. My mother had been afraid I’d be taken by strangers and be unable to name the car. But being hit for something due to brain damage which could no more work than could I sprout a tail, is part of why I’m bothering to write this blog entry.

And I learned of integrative agnosia in which it’s hard to combine sensory channels into a cohesive whole. Was this not what I wrote of as ‘being mono’ in my 9 published books? Is this why it was so hard to combine the systems of touch, vision and hearing where systems would keep going off line? Or why processing sense of self meant sense of other would disappear and vice versa as described in Like Colour To The Blind?
Come downstairs and say hello to the visitors. As I wrote in the autobiography, Nobody Nowhere, I was ten when my mother would put me through this to train me to be less feral. I’d say ‘hell-o’ to these faces, these nobody faces, then smack myself hard in the face and tear my fingernails down my cheeks. How else could I tell them how frightening and futile this activity was to someone face blind and with little sense of pain I’d known for years my self injury hurt others more than it hurt me.

But what of hope?

I’m now less meaning deaf, less meaning blind, have more body connectedness, more simultaneous sense of self and other.

And as I wrote in The Jumbled Jigsaw, there were answers to reduce these problems and as I wrote in Autism and Sensing, there was still life before the world of meaning.

Agnosias are usually caused by brain injury due to illness, vascular problems and some of the underlying causes are inherited.

Interestingly, agnosias are common in those with dementia and Glutamine is widely used in that community and the supplement which dramatically improved my verbal processing and gave me my first conscious awareness of sense of self in relation to other enough to declare in Everyday Heaven , ‘I have touched the heaven of shared social, I know what it is to be with’.

As I wrote in The Jumbled Jigsaw, agnosias are not the whole picture of autism. There’s can also be the neurological integration challenges of Dyspraxia, the nervous system disorder of Hypotonia, co-occurring gut, immune and metabolic disorders and mood, anxiety and compulsive disorders are common. Sure, there’s ‘autistic’ personality traits which are confused with the condition in these ignorant times. But how much better could autistic programs be if they are informed by what needs work together with what systems are still working.

There’s a neurodevelopmental disorder called Gerstmann’s Syndrome in which an array of agnosias together with the handwriting problem of dysgraphia and the motor planning problem of dyspraxia generally co-occur, which looks remarkably like a form of ASD which is predominantly sensory perceptual. Many with Gerstmann’s Syndrome may have extreme aphasias and be unable to speak. In fact it is suggested that the under diagnosis of Gerstmann’s is probably due to those with it getting a range of other labels. Might it not be useful to distinguish severe, moderate and mild presentations of ‘autism’ in those with Gerstmann’s Syndrome from those who are autistic for other reasons? Similarly those with Balint’s Syndrome experience marked difficulty with hand eye co-ordination (ie in catching balls or reaching for objects) and simultagnosia in which they struggle to integrate information along multiple sensory chanels. Are many with Balint’s Syndrome also lumped into the autism basket?
What’s the point of PECS with someone with visual agnosia who can’t recognise pictures?

What’s the point of auditory training with those with verbal agnosia for whom the problem is nothing to do with their hearing?

Would be dramatically alter the nature of speech therapy with those with aphasia or divert funding to facilitated communication or focus on their strengths instead of fixating on their weaknesses?

What’s the point of fixating only on sensory hypersensitivities at the expense of working with the sensory flooding associated with inability to filter types of information when one has various agnosias? If you better manage the agnosias those who have associated sensory hypersensitivities will reduce them.

It’s worth a thought.

In the meantime, enjoy the you tube clip.

Donna Williams

autistic author and autism consultant

http://www.donnawilliams.net