Of my nine published books, my fourth text book, The Jumbled Jigsaw, recently came out in Japanese under the title NO JIHEISHO NO YUTAKANA SEKAI with publishing house, Akashi Shoten.  I invited Yumi Yamaoka of Akashi Shoten to ask me some questions about the book for his Japanese readers:

YUMI YAMAOKI

What made you write The Jumbled Jigsaw?

DONNA WILLIAMS

I had been an international autism consultant since 1994.  In this work I’d met hundreds of people all diagnosed with autism who had dramatically different challenges which were all refered to as ‘part of their autism’.  But the mainstream approaches used with one, would sometimes make another’s challenges much harder.  It seemed such a tragic waste of their time, dignity, development and family finances when a far simpler, more affordable approach would be to isolate which things with which people were being termed ‘part of the autism’ and work out what the specific approaches were for each of those things.  For some people this meant addressing learned helplessness or teaching the family to use a more respectful, less pursuing or socially invasive approach.  For others it meant adapting the sensory environment and bringing in adaptations for meaning deafness, meaning blindness and body ‘agnosias’.  For others it meant addressing gut, immune, metabolic or co-morbid mood, anxiety and compulsive disorders.  For others it meant addressing oral dyspraxia, Selective Mutism, Aphasia or Semantic Pragmatic Language Disorder.  And in each case it meant distinguishing the personality from the label and understanding that people with autism spectrum conditions can also have the volume up so high on their personality traits that they are functioning in the range of ‘personality disorders’.  It also meant addressing that there were even stereotypically ‘autistic’ personality traits and teaching people not to look at these as pathology.  The other thing about writing The Jumbled Jigsaw was it was an opportunity to show people how many cost free things people could begin to do to address autism-related challenges.

YUMI YAMAOKI

How long did it take to write this book?

DONNA WILLIAMS

About a year.  It’s a big book.  But the research, clinical practice and networking involved in gathering the broad information in it spanned several years.

YUMI YAMAOKI

It might be really hard to organize vast amounts of materials and analyze enormous quantity of data to write this book. What did you find the most difficult while preparing this book?

DONNA WILLIAMS

You couldn’t write a book like this without having extensive clinical experience to reflect on.   Otherwise it would be a philosophy book.  It’s more a tool kit for analysing what’s beneath the labels of very different people diagnosed with autism.  It’s a way of telling the difference between different autism spectrum ‘fruit salads’ and what those differences mean for directions and planning for each different person with autism.

YUMI YAMAOKI

Do you like writing?

DONNA WILLIAMS

I can say I’m a poor reader.  I scan-read.  I can speak, but speaking feels like work, like labour.  Typing, by contrast, feels easy.  But often I’d rather express myself through my hands via art, sculpture, music rather than typing.

YUMI YAMAOKI

How did you come up with the idea of “Fruit Salad”? This idea is strikingly different from the traditional concept of autism as the ‘triad’ of impairments: impairments of socialization, communication, and imagination.

DONNA WILLIAMS

I realised in one of my earlier books, Autism; An Inside Out Approach, that you could take any one autism-related symptom and it could have 5 or more very different underlying causes.  So my way of thinking of this was that that one symptom will always look like an apple but if you know the difference between apples, you’ll see one is a green apple, another a red apple, another a yellow apple etc.  And then if you take another symptom which looks like an orange, it’s easy to think all oranges are the same, but in fact they can be dramatically different kinds.  And if someone’s autism has personality issues, sensory-perceptual issues, information processing issues and psychiatric issues, then each of those is like a different piece of fruit… a lemon, an apple, an orange etc… but even then the TYPES of lemons, apples, oranges will differ from person to person.  We can’t assume all will be the same type.  And traditionally, when we use one label, like ‘autism’ we presume ONE condition, not the sum total of a range of conditions… we presume one ‘fruit’, not a fruit salad which is so jumbled, a jumbled jigsaw, that we can no longer see it is not one fruit at all the a very blended up fruit salad.  The model is becoming widely used, which is exciting.

YUMI YAMAOKI

You mention “music of beingness” several times in your book. Did you coin this impressive term as a figurative expression? Or, being sensitive to music, do you really hear some kind of sound or music?  If the latter is the case, how does your “music of beingness” sound like?

DONNA WILLIAMS

Ah, well I have synesthesia – sensory crossover – I do SEE musically, and I’ve also had flashes of color caused by emotions and touch.  But the ‘music of beingness’ comes from being a very advanced systematician.  If you are a musician, which I am, you can map out all the rises and falls, the spacing between notes, the phrasing, etc, and I FEEL that when encountering the unique patterns of individuals, whether animals or people, perhaps further.  It’s as if my body is an instrument capable of mapping patterns and shifts unique to each individual entity.  I have visual, verbal and body agnosia issues… meaning deafness, meaning blindness, difficulty processing body messages…so I think I developed compensations for this and some of those have been synesthesias and some is the capacity to map patterns – to feel this ‘music of beingness’ from being to being.

YUMI YAMAOKI

Dependency issues and boundary issues are discussed in Chapters eight and nine. There are a lot of parents also in Japan who are socially isolated due to their children’s disability and are affected by “co-dependency.” Could you offer words of encouragement to such parents?

DONNA WILLIAMS

Yes, the relationship between learned helplessness and the co-dependency which feeds it is sometimes quite heartbreaking.  We are so fixated on the  diagnosis of the child we forget that the parent may have some significant pieces of ‘fruit salad’ themselves, or that the parent is addicted to overcare and self isolation which does nothing to help the child.  But fear of blame doesn’t help either, so a good starting point is that we’re all messed up in some way, none of us is perfect.  And also that to overdo the ‘superparent’ thing, to overdo anything, becomes imbalanced and extreme and ongoing imbalance is generally not healthy.  Parents caught in co-dependency and promoting learned helplessness have found it painful but ultimately freeing to acknolwedge their own condition is in need of treatment.

YUMI YAMAOKI

You write at the end of the book that the autism is “the beautiful behavioural mutations which are the fabric of social diversity”and that inclusion of people with autism will make our society richer. Going around the world giving lectures and meeting many people, do you yourself feel that the society is accepting diversity? And what do you think needs to be done to create society with diversity?

DONNA WILLIAMS

I think there is some token acceptance and there is some fanciful and trendy interest in those with autism.  I also think the awareness of those truly commited to helping, has expanded and is still expanding.  We’re seeing past stereotypes both old and new.  We’re talking a lot about ability in disABILITY, but there’s certainly far more to be done.

YUMI YAMAOKI

On the one hand your write analytical works like this book, and on the other hand you do painting, sculpture and composing. You are exactly working in two worlds of left brain and right brain, in other words in the worlds of interpretation and sensing, which are mentioned in this book. We wonder how you make the transition from one world to another.

DONNA WILLIAMS

My left-right  integration is quite poor but it has allowed me to excel in areas relating to each.  I can get lost in arts without judgement or analysis and feel my world as a sensate.  I can be a consultant and see people as interesting systems and delve into lists and frameworks as a systematician.  I am feral on the one hand, Mr. Spock on the other.  My ability for mental analysis was, however, developed quite late.  I began to understand language with meaning around age 9-11.  So I would still say I have far more of my soul in arts.

YUMI YAMAOKI

You write that you use gestural signing to augment verbal communication. It sounds to us as something more concrete, figurative and iconic than the sign language that deaf people use. Could you explain how it is like, giving us some examples?

DONNA WILLIAMS

Deaf signing includes traditional symbolic signs, finger spelling as well as gestural signs.  My signing is purely gestural.  It comes from thinking in movement.  So for the word Government, for example, I’d sign as two hands drawing out a tall building top to bottom, then clamping a fist onto the imaged top of that, so my translation would be, ‘tall building, mighty fist rules over it’.  The word ‘autistic’, I’d sign by indicating a boundary of personal space, then blocking what’s beyond that… so my sign is literally ‘own world, keep out’.   I can understand around 70% of what people say, but still lose about 30% because there are many words which have no physical form, movement or textures to them, so they are very hard to sign and without an ability to convert them to physical experiences, they disappear.

Thank you, Yumi, for your interesting questions.

I hope my Japanese audiences visit Akashi Shoten.

Warmly,

Donna Williams, Dip Ed, BA Hons

International author, lecturer and autism consultant.

http://www.donnawilliams.net