Polly's pages (aka 'Donna Williams')

Ever the arty Autie

An autistic journey in acquiring functional verbal communication – by ‘Donna Williams’

August25

Donna Williams aged 10 I was 9-11 years old when I progressively went from 90% meaning deaf and predominantly stored phrases, TV scripts and echolalia to being only 50% meaning deaf and finally striving to string simple novel sentences together. By age 11 I could construct slow, klunky simple sentences (and still also had fluent, expressive echolalia), by age 12 I could do long litanies at people and was developing simple conversing skills. By 18 I had learned to suppress much of my echolalia, keeping my ‘self chatter’ for when I was alone. So how did this happen?

Around age 9-11 my father left a record player and a pile of old 78 records in my room featuring a vast array of theatrical songs from the 1920s-1940s and I came to sing in a vast array of voices with far expanded, albeit echolalic, vocabulary. This also greatly improved my confidence with verbal speech and my enjoyment of it and countered many an episode of Selective Mutism as I progressively moved into functional speech.

Around age 9-10 I was also left a typewriter in my room. I was highly anxious and suspicious of it but I loved pressing buttons and began to type letters. One day there was paper in it and the letter typed onto the page. Over time I overcame my anxiety of seeing myself expressing myself on a page and typed letter strings, then later typed words I knew, then eventually lists of words, then by age 13 was typing poems. This created awareness and confidence in myself as someone who was in charge of flexible, personal and emotional communication through words.

Around age 9-11 my mother mirrors an entire wall in our living room and in my bedroom with mirror tiles. A beaded curtain on the pantry door was also put up between the pantry and the kitchen where people gathered and loving beaded curtains meant I’d stand in it making it clack-clack for extended lengths of time. All of these meant I stayed in the living room and kitchen for greater lengths of time, more exposed to communication around me and spent more time chattering away at my reflection in my room.

My younger brother was 6 years younger than me and by age 2-5 was my closest social contact in the home to whom I had deep attachment. At age 3 he had 6 words, none of which were understood outside of the family. By age 4-5 he was speaking fluently. I would have been 10-11 years old. Being challenged to communicate by a younger child who is moving into fluent speech would have helped me to make a communication leap.

From age 8-10 I made friends with an older Italian girl around the corner and ultimately spent many of my days and nights there, progressively gaining Italian. When I came to speak fluently in front of my mother in functional speech it was not in English, it was in Italian. This acquisition of Italian was in part due to this environment causing none of the chronic fight-flight at home, the fact I’d had my first 3 years exposed to fluent Italian, the fact that talking a different language allowed me to feel more confident and less prone to being further sabotaged by Selective Mutism, the fact that I was striving for belonging in this Italian family, and the fact the language sensorily appealed to me and had none of the trauma associations that my failures to acquire functional English did.

Around age 9-10 I was diagnosed with severe language processing disorder. This meant I was finally treated as something other than just ‘psychotic’ or ‘disturbed’ and my mother began to use slowed, clearly spaced telegraphic speech, augmented with associated gestures and representational objects. This allowed me to not only build up the one-word = one-meaning system (semantics) but progressively understand at least preconsciously that I could also start to combine these.

Around age 10 (1973) I was also put onto Zinc, vitamin C and multivitamin-minerals and, with the help of being sent off to eat along with the mirror, I finally moved onto eating whole meals. It may be I was one of the first people with diagnosed with autism known to be treated with vitamin therapy.

Around age 10-11 I was put on antiinflammatories for juvenile rheumatism (after regularly body slamming my arms and shoulders and punching my legs) and sedatives for chronic anxiety (which I remained on to age 17). It is possible these both helped me gain enough sleep to build new connections and synthesis information I hadn’t yet done. I was diagnosed decades later with sleep fragmentation and associated hypersomnia/narcolepsy which I believe I’d had all my life from brain injury. Anything that contributed to me having relief from chronic fight-flight and gaining sleep may have helped me develop communication.

When I was 10 years old, in grade 4, my reading teacher realised I could read fluently but had virtually no comprehension of my reading at all and was only guessing at the meaning of what I’d read. In spite of my distress, disgust and outrage at my demotion to picture-word dictionaries this was a major breakthrough. When she found I could learn these associations by rote but not apply them to the real world she began to use associated gestures. As she did this, having been exposed to this by my father since age 2-3 and by my mother from age 9-10 I now began to convert the pictures into gestural signing and build up the associated words for each experience.

When I was 11 years old, my grade 5 teacher, Helen Elmer, insisted that I use words if I wanted a chair. In spite of my warning glares at her and her awareness I was already labelled ‘disturbed’ and had no problem living down to that with violence, she was determined to do an ‘Annie Sullivan’ on me.

We had a show down and I conceded. With extreme and slow effort I cranked out with the help of augmentative gestural signing, “I-want-chair-here”. She then said, “ok, go get yourself a chair”. I got my chair and overcame my rage at her as she continued to encourage me I could create sentences to have my needs met.

As I acquired functional speech the foreigness, klunkiness, slowness of my speech sounded so foreign to me it was aversive. As such I didn’t feel pride in it, failed to personally identify with and saw it as not ‘natural’. I missed the fluency, ease, emotional expressiveness and many voices of my echolalia and saw functional speech as a poor substitute. Dealing with abuse and bullying contributed to my necessity to gain functional speech but also sent me regularly into episodes of Selective Mutism for days, weeks or months. My father was the catalyst for keeping me communicating though his impromtu singing, his silliness, surrealism and relentless cartoonish provocation.

Aged 11, my grade 6 teacher, Mr Frank Ryan, learned that if he sat in front of me I went Selectively Mute or my language trailed off into echolalic self chatter. He learned that if he sat alongside of me, not looking at me, and used self chatter, I could respond with my own in comprehensible speech. This taught me that I could communicate far better if my listener was clearly in their own space, not watching, waiting, wanting and using less to get more.

By my first year in high school, aged 12, I was communicating in one sided fluent litanies. I could talk at and in front of people but had limited capacity to talk ‘with’ others. Unfortunately, I had a head injury by the end of this year when my mother hit my head into the wall multiple times until I collapsed. After that I was in a very regressed state and my memories of that time are dreamlike and fragmented. For 6 months lost my capacity to communicate. I was in a dream state, other people’s speech was incomprehensible again and ‘miles away’ and I could not find any thoughts or feelings to express. I was sent off to one of my mother’s relatives in the bush who was told I’d ‘had a breakdown’ and this story was continued throughout my time with that family. Only with progressive neurological complications decades later as an adult have I been able to talk about this as abuse related head trauma. When I returned to school it was a new school. I had had nowhere near the abilities I’d previously had and lasted 2 weeks. My third high school also found me so unmanageable I was banned from most classes and looked after much of the time in the co-ordinator’s office – who was later the MP Caroline Hogg. At this school I gained an unofficial foster family and eventually regained the skills I’d had before the head injury.

At age 18 I had limited literacy but was encouraged to return to education in a teriary orientation program. I was given remedial classes and gained progressive literacy and proficiency as a writer. Alongside this I had continued as a poet. By the end of university I had the foundations of being a writer. At 26 I wrote my first book, the first of so many. The success of that book brought me over 100 interviews and these dramatically honed my communication skills, challenging me to learn how to both express and track my speech in order to fluently make comprehensible sense to others. With the help of educational psychologist Dr Lawrie Bartak, I learned how to turn take, giving people time to speak and striving to respond comprehensibly on the same theme.

At 32 years old I gained the capacity to simultaneously process self and other for more than 30 minutes. This allowed me to finally understand the difference between talking ‘in front of’ or ‘at’ others and what it was to talk ‘with’. I said of this life changing experience, “I have touched the heaven of shared ‘social’…I know what it is to be ‘with'”.


Polly Samuel (aka ‘Donna Williams‘)
Author, artist, consultant and presenter.
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.