I was asked by a parent of a son with autism about my language history.  I hope there comes a day where we stop understand that serious language and communication disorders in those with autism actually have identifiable labels of their own with their own associated strategies and treatments and stop mystifying them as ‘the autism’.  So here’s what I’d replied to the question.

I didn’t have Oral Dyspraxia nor significant Speech Apraxia, so unlike those with these conditions, I was able to pronounce words.  However I was in late childhood by the time I could use ‘functional’ speech.  My issues were about acquiring the ability to speak with interpretive meaning, ability to speak interactively, ability to use speech with intention and purpose, and ability to dare emotional and personal speech.  Mine was a journey of Verbal Agnosia (meaning deafness) and Semantic Pragmatic Language Disorder with later episodes of Selective Mutism.

Unlike Temple Grandin’s language history before she could speak by age 3, my speech history wasn’t that I couldn’t pronounce three words, it was that I couldn’t RECEPTIVELY process a string of 3 words  with meaning.  Even if I ‘got’ the meaning of the first word, by the third it was meaningless jumble.

My speech history is that I was tested for deafness at age 2 but had delayed echolalia from 18 months, 2 hrs of self-directed stored chatter in my grandparents voices.  There was no asking for a drink, no badly pronounced request for a ball (Temple Grandin at age 2 had requested ‘ball’ but pronounced it ‘bah’ and after intensive speech therapy had functional speech by age 3).  I had echolalia but it’s not the same as saying I had ‘speech’ in any semantic or pragmatic terms.  According to my father and aunt, in 1965, at age 2, after a 3 day inpatient hospital observation at St Elmo’s Private Hospital in Brunswick, Victoria, I was assessed as psychotic.
By age 4-5 I had immediate echolalia, repeating everything said to me, otherwise silent or self-directed songs, advertisements, strings from TV.  This is the same degree of communicative speech that a speak-back electronic toy will give you.

By age 9 I had this immediate and delayed echolalia plus made-up words (Donna-isms) which you can read about in Autism And Sensing, The Unlost Instinct where I write about ‘sensing based language’ and how its a completely different system to ‘interpretive language’ (one word, one meaning, strung into sentences).  Around this age I was labeled Emotionally Disturbed in my school records.

At age 9 my meaning deafness was finally understood (after another test for deafness).  I had about 10 percent receptive speech.  Then between age 9-11, a remedial reading teacher at school, taught me to linke writting language to pictures via gestures (the pic-word connection was hopeless as my visual processing and  retention for meaning without gesture was shot) and finally I could begin to read with meaning.

At home, by age 10-11, gestural signing and communication via objects was used as well as simplified, slowed speech (this is all in Autism; An Inside Out Approach and is also in detail on my DVD called ‘Blah Blah Blah’).

I was put on zinc, multivitamin-minerals at age 9 and anxiety medication and because further testing for deafness revealed I was meaning deaf, my environment began to use very simplied speech, gestural signing and the use of representational objects … which I feel all contributed to me getting enough receptive meaning to acquire interpretive language and begin to dare use it (I was terrified to use it socially and it disturbed me to hear my ‘broken’ speech when I could use self-directed stored strings fluently).  People don’t realise people with autism learning to speak may have NO simultaneous sense of self and other, so they are speaking into a perceptual void (this is outlined in Autism; An Inside Out Approach and also in The Jumbled Jigsaw).  Add mood and anxiety disorders to this and its a major challenge for those with autism.

Social Anxiety peaked a result of emerging into a world of interpretive meaning and with it my mind, the world of conscious thought, began to awaken, and the result of this and using a quite clumsy new tool of the one-word-one-meaning system (someone said watching me try and string a meaningful sentence together was painful and took me ages) I developed Selective Mutism which came and went in episodes from age 9-12.

By age 13 I had two hour monologue litanies of every action of every classmate over the day… our marvellous language ‘breakthrough’… Donna ‘converses’… well, not exactly.

By age 17 I had 50 percent communication and 50 percent stored language strings.  My receptive speech was about 50 percent.

By age 20 I stopped mouthing EVERYTHING said to me and started to repeat it internally to try and grasp its meaning as there was still significant process delay.  It was in my 20s I was formally diagnosed with autism (according to my father, it had already been suggested to my family when I was 10 by a female teacher who had taken me home after a family fight).

Following the publication of my first book, Nobody Nowhere, I was extensively interviewed and would answer people’s questions via typing.  After about 50 typed interviews i could speak fluently on autism and via typing (which started with letter strings at age 9 and was developed by age 13 and academic by age 18 and literary by age 26) I came to be able to speak anything I’d already typed.  9 books and 100 interviews and lectures later, I can speak anything I’ve already typed but things I’ve never typed about I still struggle to speak fluently.

In my mid 20s tinted lenses (I now use some from BPI) helped with processing time by reducing visual overload re fragmented vision – this is in Like Colour to The Blind (note UK spelling and that this and my other books are all published by Jessica Kingsley Publishers).

By my 20s, now CF/GF/low salicylate/non-sugar and on omega 3s, calcium magnesium, mega B etc, and begining to openly use representational objects and gestural signing to better track my own speech and that of others, my processing and communication was on a good track.

At age 30 or so came Glutamine and finally flowing two way dialogue instead of rants, monologues, litanies and stored strings, became possible for reasonable bursts before the ‘batteries’ would go flat.  Wtih Glutamine came a simultaneous sense of self and other ESSENTIAL to two way dialogue… this is in detail in Everyday Heaven.

And after age 30 came treatment for 2 primary immune deficiencies and medication for co-morbid mood, anxiety and compulsive disorders – meaning heaps more processing time and my personhood no longer flooded out by autism related challenges so I feel I’m more the person than the condition but before the condition dominated much of my experiences, perception, cognition and identity.

In my 40s I saw an audiologist specialising in language processing disorders and was diagnosed with a marked receptive language processing disorder even though I was only 30% meaning deaf by this time.

In terms of language disorder, mine was not an Asperger’s journey.  Language hasn’t been an easy road.  If I made it look easy, anyone whose read my books knows it took a long time and passion and effort and inovation to get where I am with communication.

Donna Williams
autistic author of 9 books in the field of autism.
www.donnawilliams.net
www.auties.org