Since the development of iPads, many functionally non verbal people with autism have shown themselves able to express themselves independently. Others, however, have shown little interest in using an isolated finger to type or even point out icons or swipe pages on an iPad. When the same person sits stimming on their finger waggling, it is easy for some people to presume or imagine that person is to intellectually impaired they just don’t have the IQ to understand what the device is for, how to use it for themselves or why they might want to. OK, so imagine you were born without legs then someone presents you with set of stairs and expects that if you were intelligent enough you’d show us how you can go up those stairs? Well, that’s what it can be like for people with Finger Agnosia to isolate a finger for themselves and reliably point or type without guided support, yes, we’re talking here about their need for help, help is called facilitation. Facilitation comes from the word ‘facile’, which means ‘easy’, facilitation actually means ‘to make easier’. Facilitated typing is typing made easier for the type-speaker.

Autism is a ‘fruit salad’. Some people may identify as autistic on the basis of being ‘like Temple Grandin’ due to fitting descriptives like ‘gifted‘, ‘visual thinker‘, ‘asocial‘, ‘geek‘, ‘asexual‘, having Social Emotional Agnosia, some level of dyspraxia, sensory amplification, sensory integration issues, Pragmatic Language Disorder, panic disorder, social anxiety and fit the criteria for Obsessive Compulsive Personality Disorder (ie in more common language ‘Aspie’) or Schizoid Personality Disorder. In association with Avoidant Personality Disorder, associated Selective Mutism, or Faceblindness (none of which Temple fit but which is socially recognised within accepted stereotypically ‘Aspie’ presentation), broadly we could call this a stereotypical ‘Aspie fruit salad’.

Others, however, may fit little or none of these and instead have conditions these people may have no more idea of than the general public might; Visual, verbal and body agnosias, aphasias, apraxias, ataxia, involuntary echophenomena, marked learning disabilities (sometimes with associated compensatory or contrasting strengths), seizures, an array of co-occurring mood, anxiety and compulsive disorders. In other words, a quite different, sometimes more ‘Kanner’s Syndrome‘ looking autism fruit salad.

A range of already named conditions already present as ‘part of the person’s autism’. If a child had only one or two of these they would be easy to identify. But when a child has 3, 6, even more of these, collectively they can present as ‘the autism‘.

There are also a range of already named syndromes which involve an array of conditions that can collectively present as ‘autism’. Again, if someone fitted only one of these syndromes, that would have a better chance of being identified instead of gaining the simplistic umbrella term of ‘autism’. If one has a parent somewhere on the autism spectrum, one might inherit what that parent brought to that child’s genetics but the child may still develop acquired autism related conditions that add to that. If two parents who are both ‘somewhere on the autism spectrum’ then chances are both have brought their own ‘fruit salads’ to the genetic mix their child inherited. In other words the child But the identification of these syndromes is important because a) it can help better tailor services so these fit what is actually going on for each person, not just how they behaviorally and developmentally present, b) it helps us to truly grasp the diversity among those identifying as, presenting as, and developing as ‘autistic’ people. c) being fully informed of the nature of that diversity means we stop perpetuating harmful stereotypes both through glorifying autism where the person may have significant health challenges that need addressing or through presuming health issues in those who have none, d) it helps society advance through illuminating previously held ignorance about what they had presumed mental retardation or mental illness.

Among these syndromes which already contain a range of conditions that collectively can present as ‘autism’ are: Multiple Complex Developmental Disorder, NIDS, PANDAS, FASD, Landau Kleffner Syndrome, Gittleman Syndrome, Gerstmann Syndrome, Frontal Lobe Syndrome, Posterior Cerebral Artery Syndrome.

Gerstmann Syndrome in particular has a range of underlying causes and includes a form of agnosia called Finger Agnosia. Among the causes of Gerstmann Syndrome, which include infant stroke, is alcohol damage. I am the child of an alcoholic. When I was 26 an educational psychologist Dr Lawrie Bartak had me close my eyes and tested my awareness of my fingers. He observed I had only an ‘outline sense of my hand’ and couldn’t differentiate the other fingers except my pinky and thumb. I had always had very shabby writing, probably the worst in my class. Myself, my two brothers and my father were all dyslexic. My father, whose (lovely) and quite ‘autie’ mother was a ‘dipso’ in particular wrote in mixtures of small and capital letters, standard and cursive script, all the styles jumbled into one line and was close to illiterate. Dr Bartak observed that I had ‘Finger Agnosia’.

Through childhood I did plenty of finger play and eventually developed reasonable fine motor skills regardless. But agnosias occur in degrees and have different capacities for recovery. I was severely faceblind but by my 40s only around 80% faceblind. I was 90% meaning deaf (auditory agnosia and auditory verbal agnosia) at age 9 but only 50% meaning deaf by age 11 and only 30% by age 32. I could read by age 6 but couldn’t read with meaning (visual-verbal agnosia) until age 9-11 and still probably have this impairment effect around 30% of what I read when its bullet points or lists, and up to 50% of the meaning has dropped out when its the first few pages of a novel, then up to 80% of the meaning has dropped out after reading 10 pages. I saw my world in bits (simultagnosia) causing me meaning blindness, context blindness and some object blindness until tinted lenses at age 28. As for the finger agnosia, its improved since my mid 20s but what was it like in childhood? And how did I improve?

Since age 5 my mother intensively trained me in ballet through physical patterning and rote. She would also isolate my fingers and put them into the ballet finger positions. Since around age 5 I would hear music in my head and play the ascending and descending notes on the air with my fingers. In grade 3 & 4 at primary school (when they could) the teachers would use hand over hand writing, trying to get my finger grip corrected on a pencil and helping me acquire legible writing. At age 9 I was left a typewriter and began slow one finger typing. At 14 I was in a typing class and taught typing exercises. At 19, with a great innate love of music and ability to play by ear and compose, I began to play the piano daily. At 19 I got a typewriter to type all my essays and by 23 was a reasonable typist. At 26 I determined to become a fast typist and trained daily until I could get a job as one. I saw Dr Bartak around 6 months later and the finger agnosia was still observable, but functionally, it made little difference to my life. But what if I hadn’t had so much training, what essentially amounted to brain gym, to get to this level of improvement? What would it have been life for an adult who had missed all these opportunities, remained functionally non verbal with a range of behavioural challenges that made them look ‘retarded’ and then was given an iPad to suddenly type independently? Would it be like presenting the stairs to the person with no legs? Would they go into passive-aggressive avoidance of the iPad, humming, twiddling, stimming, avoiding? Would they give it a quick half hearted try as if to say ‘see, yes, I’m incompetent’, then reject it as ‘boring’ or even look at you as if you are nuts to expect them to type independently? But what might happen if you used finger isolation, then guiding their finger through the physical patterning of typing, from day to day, week to week, month to month for a year? Would this work like brain gym, developing not only their confidence that in spite of speech apraxia/aphasia, behavioural or impulse control challenges, that they might actually be able to improve their own finger isolation, pointing, and develop as a type-speaker, perhaps even eventually build the capacity to take over as you eventually fade out physical support?

Then what if you were told Facilitated Communication is a sham? What if you were told that if an autistic person ‘really’ had the ability to type, they wouldn’t need hand over hand facilitation? What if you were told that those who had developed to independent typing after years of facilitation were mere ‘exceptions’: Tim Chan, Lucy Blackman, Larry Bissonette, Sydney Edmond,,… Carly Fleischman….

Yeah… and the person without the legs is back to watching you all stride up the stairs.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.