Paul Swann is a Commissioning & Planning Officer with Department of Adult Social Care at Wrexham County Borough Council in Wales, UK. In the run up to an evening lecture I’m doing in Wrexham on Tuesday 9th Sept 2008, I offered Paul to set me 5 questions for an email interview. He did a wonderful job, setting in depth questions as good as any of the 100 or so journalists who’ve interviewed me over the last 20 years. Here’s out interview:

PAUL SWANN:
Donna, I heard you talk in Cardiff a couple of years ago and was amazed not only by the clarity of what you said but also by the openness and passion with which you shared your story. This also comes across in your books, music and art and is remarkable considering your vulnerability to exposure anxiety. Is there a personal cost involved in your public lecturing and if so, how do you deal with it?

DONNA WILLIAMS:
When I was small the Exposure Anxiety (EA) was so unconscious that it manifested more as a dreamlike state, the swings between compulsive involuntary avoidance, diversion and retaliation responses were pretty seemless. It was into late childhood, after coming to understand and begin to use language with meaning that mind began to wake up and that’s where the shifts became sharper, more obvious, and I was also really trying at time to escape it by then, and boy oh boy, an entrenched hair trigger involuntary self protection mechanism is like Big Brother, the more consciously you try and fight it, the more switched on it gets to your attempts to thwart it, so the Exposure Anxiety related behaviours became more obvious, more disturbing, with the ‘me’, the ‘self’ stuck in the middle.
As someone with meaning deafness, meaning blindness issues, I was always drawn strongly to movement, textures, colors, light patterns, rhythms, forms…essentially the foundations of arts and my father’s mother’s side is full of writers, artists, musicians, so there was a really strong personality bent toward arts there. But the link between that and expression from self was firmly in the hands of EA so I felt like this person who could only move through and among arts, not be a conduit for them, except where ‘autistic stimming’ bordered a kind of living ARTism in it’s sensory engagement with patterns. The record player, sewing machine and typewriter had a big impact on bridging that because arts came through each of them, but unconscious, and hence got around much of the EA barrier.
With the record player, at first I couldn’t dare use it as a record player, because the fear others would rejoice or pounce on and try and expand my interest if I did, made it impossible to use it in a usual way. So I used the turntable to spin and propel objects (little China figurines actually) instead. Saddened I was breaking things I loved, I moved into drawing spirals on records to hypnotise myself as they spun, which I feel is one of the first signs I had inherited a tendency to addiction which is rampant on my mother’s side, because I just wanted to disappear, cognitively, physically, emotionally, I loved that stillness, couldn’t get deep enough into that space. Luckily I haven’t ended up an addict, but it does relate to my rampant ARTism, because ultimately this gives me an expressive place to lose awareness, and yet, ironically, it’s also the place through which I express it preconsciously then later share it with the world (that was the hard part). But, anyway, I eventualy progressed to playing big piles of 78s and in EA style sang them all in the voices of the artists on them (unable to sing them as self). This also gave me great vocal and fluency, albeit utterly stored phrases.
The typewriter was really essential in showing me how my unconscious self had so many more skills than my conscious self knew or would allow connection with. It too 4 years to progress from typing letter strings at 9 to typing lists, then finally poetry by age 13 but it was like the typewriter was a conduit linking my unconscious with my conscious mind through my fingers. It was terrifying but wonderful. I shredded most of what I typed but ultimately was able to hand my father poetry when I was 13 and although it was in ‘autie speak’, my father’s very moved response, showed me he knew there was someone in there, someone beyond the stored phrases and semblance of a really challenged kid.
The sewing machine allowed me to join my love of texture and use of my hands as my eyes to expression through creativity and was also the birth of the concept of combining two or more things to make a whole as I stitched two squares together and then made a string of them then more strings and joined them to form patchwork. It was the first realisation of that ability to physically create through my hands.
I’d been put through dance as a kid, very regimentally, including being sent out onto the stage with the other kids to do the rote learned repertoire. So I had that sense of structure instilled then, if only rote, and music and a strong musical intelligence gives you rhythm and flow so one of the big things for me as a public speaker is that I use often fluent gestural signing, so my hands show the concepts, and that’s kind of like having ballet come through your hands. I also had a strong grasp through such regimental training then that one doesn’t have to wait to WANT to give, sometimes it’s just what’s right or what you CAN do. So emotionally, that was a good lesson and I think it’s part of being a generous and responsible public speaker.
The personal cost of lecturing? Well, there’s part of it which is very linked to arts, it’s about conveying experience and my hands and speech and presentation is the media for that. Like arts, it’s also not ‘all about me’, it’s about letting things through so others can experience them. I used to just die standing on a stage without any rote repertoire to hide within and behind. I was the snot monster, tears and snot streaming, shaking like a mini earthquake, tics raging as soon as I finished, and a murderous rage at daring the exposure made it really hard not to thump the hell out of myself straight afterwards. So it was like the audiences were in the ring between me and my EA and the more generous I was to them, the more I could ultimately convince my EA, this ain’t about ‘me’ so chill out, I’m telling them only what is past, not present, so you don’t need to freak out in wild self protection stuff at me. And somewhere in among dietary intervention and medication helping, EA and I got some kind of truce about public speaking, that it’s got a ‘purpose’ so isn’t ‘personal’ that I’m not metaphorically blasphemining in the reality of my intensely solitary nature and it’s guards. And it’s pretty chilled out progressively about arts in the same way, that by accepting my expression through arts, it and I resolve that I connect indirectly so ensuring no direct threat of connection. I still don’t hug 😉 Except my husband and my younger brother.
Fame is also a strange beast, and many people feel very familiar with me, which is odd, because I’m both cheery and extremely solitary by nature. So fame cuts the world off from me but also brings it in at the same time. It allows me an interesting anthropologists view of the world, which the voyeur in me feels ok with 😉

PAUL SWANN:
Thanks Donna for providing a wonderful insight into your inner world and its interface with the world at large. My next question is prompted by your response but goes off at a slight tangent so please indulge me! A fascinating video of a talk by Neuroanatomist Dr Jill Bolte Taylor is circulating on the internet which you may have seen, but if not the link is:

http://www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

Jill had a stroke 10 years ago and was able to remain aware through her illness and recovery, which has given her a very different view of the world. There are similarities between her new world view and that of Eckhart Tolle and other ‘nondual’ teachers whose so-called ‘enlightenment’ experiences have given them a realisation that “All in One”. Jill and Eckhart point out that our perception of duality and separateness arises from the way that the brain functions in different ways through its left and right hemispheres.
I wonder if the insights that you’ve gained from understanding the differences in brain function between neurotypical people and people who are on the Autism Spectrum has similarly lead you to develop a philosophical/spiritual world view?

DONNA:
Hmm, well Jill’s experience of losing Left Brain processing is very familiar to me. I wrote in Nobody Nowhere of having no personal relationship to body, of merging with the wall, with objects, little distinction of self from the object and sensory world, being fascinated with the oddity and foreignness of my hands, struggling to link my the sound of name to the experience of self, doing things via matching patterns due to inability to rely on interpretive processing, unable to take pain personally or easily tell if it were internal or external, emotional or physical… all these things she writes of as part of her left brain hemmorage leading to stroke in the left hemisphere, are things very akin to my early childhood.
But by late childhood I was gaining visual and verbal meaning and beginning. And once I progressively managed to living utterly in the moment and unable to reflect or project forward. Around age 9 I was moving into the world of visual and verbal meaning and progressive exploration of connection to body as self and began to form sentences of interpretive speech and shift from the strictly stored phrases of songs, advertisements and TV shows. By age 11 I was fascinated by categories and beginning to conceptualise so this is akin to how Jill describes the role of Left Brain processing, so this shift was perhaps the birth of Left Brain processing. By age 13 I had fluent litanies so although I didn’t yet have much interactive speech I had plenty of interpretive speech. What followed was sharp swinging between Right Brain and Left Brain realities with little connection between the two which is a different perceptual and cognitive reality to most people with integrated Left-Right brain processing. By age 30 I have a reasonable level of integrated processing but there are many times this splits or I lose chunks of processing so what’s processed is a partial version of what non-spectrum people may process but simultaneously I process those partial chunks of the whole more DEEPLY with the only parts ‘online at the time.
In Autism And Sensing; The Unlost Instinct, I wrote a lot about this earlier ‘Right Brain’ world of pattern, theme and feel and it’s spiritual value, it’s preconscious place of emotional intelligence. And I contrasted it with the later Left Brain world of intellect and mind, of interpretive meaning and words. There is much I relate to about agnosias – meaning blindness, face blindness, meaning deafness, body disconnectedness, inability to process a simultaneous sense of self and other – and infantile strokes can underpin some agnosias and can even go undetected. Some metabolic disorders can cause vascular issues causing similar problems in the brain and some of these things can run in families and others can stem from environmental triggers.
According to my aunt, my mother took Quinine twice during pregnancy as there were no legal abortions in the 60s and this is known to cause liver and nervous system damage so that may have contributed to my issues, as well as my mother’s alcoholism, but her issues aside I have learned that ASD and related challenges already ran on both sides of my father’s family (my father’s mother was the offspring of first cousins who, themselves were also the offspring of first cousins which may have something to do with it). So on a spiritual/philosophical level, yes, making major neurological journeys from one perceptual and cognitive reality to another and reflecting on what we all share as humans and were I fit in wide social diversity, these things are like the experiences of the astronauts looking back at Earth from space…it changes people. But on a social-emotional level, too, being from two very developmentally challenged parents and having to fend for myself from early on, has meant I’ve come to reflect on what they got so right and the things they did so wrong. This has left me feeling something of a ‘child of the universe’, so there’s a belonging and simultaneous alienation from human kind that each run so deep in me. Those contrasts and whole they contribute to a relatively cohesive whole of who I am, make me very Taoist. As a consultant, however, I’ve worked with 100s of people with autism and the greatest thing about that is learning how diverse this group is, that no ‘autism fruit salad’ is exactly the same combination, that similarities can be underpinned by utterly different mechanisms for each person.

PAUL SWANN:
So that’s the meaning of life, the universe and everything solved in just 2 questions! Again your response has given me a lot to think about. The teacher who’s had the biggest influence on me is Sri Nisargadatta Maharaj, an uneducated cigarette seller who lived in a tenement building in Bombay. And yet his books such as “I Am That” (based on transcripts of his talks) contain the most profound wisdom. Perhaps the reason that some people are more able to see the truth of life is because their brain functions in a different way to the norm. I imagine that this can be both a blessing and a curse.
Which leads me to my third question. Society is set up for people who fit the “norm” and discriminates against those who are perceived as “disabled” or different in some way. The pressure to fit in makes life extremely difficult for some people on the Autism Spectrum. I’ve heard some say that they would give anything for a cure while others maintain that it’s society that needs to change and that Auties should develop more awareness of their own culture. So what is your view on the “culture versus cure” debate? Is it perhaps not either-or, but both?

DONNA:
It really depends on what you call ‘autism’. If you have serious gut/immune/metabolic disorders which seriously diminish and deteriorate your brain function, lead to highly imbalanced brain chemistry and set off disabling levels of mood, anxiety and compulsive disorders to the degree you are severely dyspraxic, agnosic, self injurious, disoriented distressed and riddled with involuntary behaviours, then it’s hard to break out the champagne and celebrate that as culture. Some would argue ‘that’s not autism’ but as an autism consultant I’ve met kids who fit that combination who look as severely autistic as someone diagnosed autistic can look. We could argue that THOSE ONES shouldn’t be diagnosed with autism because THEY are not real cases, pure cases, because those one’s have health issues, co-morbid disorders etc and pure autism is just a personality state with a predisposition to visual thinking. (In fact I know a woman with Asperger’s who claims Asperger’s is ‘pure autism’ on the basis it is only about a personality difference). But given 65% of the general population predominantly think visually, then if we shoot that component of autism down as something actually neuro-typical, then what’s left of the ‘culture’, a shared set of personality traits? And can those with a shared set of personality traits form a ‘culture’? And which traits do we mean?
>>>> OK, so if we mean the conscientious trait which in the extreme becomes Obsessive Compulsive Personality Disorder, do we then include all the non-spectrum people who also have that trait? Or only if they are also engineers and have Social-Emotional Agnosia (the neurological inability to naturally read facial expression, body language, intonation)? If we mean the solitary trait, do we include ever nomad? If we mean the artistic or idiosyncratic trait, do we include every artist and eccentric? If we mean the sensitive or leisurely trait do we include every shy wall flower and every couch potato?
Am I knocking ‘autistic culture’? I met another face blind person on the autism spectrum who is a musician with synesthesia who, like me, sees musically. That’s sort of cool, it feels a little cultural. But not for a minute do I think ALL people on the autism spectrum will share even these few things with us.
Do I feel autism needs curing? I feel it’s negligent to fail to treat serious health issues but is that the same as treating ‘the autism’? First we have to define what each person’s autism is. And celebrity autistics have often made this as clear as mud, promoting their own particular ASD as ‘THE only form of pure, real, 100% Kosher’ autism. Going further into cultural supremacy claiming every genius has after death been identified as ‘on the spectrum’ has been extended into foolish claims that non-autistic people could never have progressed without ‘autistic genius’ and recently the slogan ‘the only good NT (neuro-typical person) is a dead NT’. So we’ve heard that crap before, in Nazi Germany, it’s tedious and displays something far from the proclaimed genius of those ‘in the culture’. Maybe I believe most of all in growing up and getting ourselves out of the school yard.

PAUL SWANN:
There’s a lot of confusion about Autism Spectrum Conditions which thankfully your work is helping to clarify. Here in Wales we have the world’s first Autism Strategic Action Plan, which is a step in the right direction. However, there’s a long way to go before the majority of professionals who come into contact with people on the Autism Spectrum will a) recognise the condition and b) know what support services each individual will need to enable them to achieve their full potential and live as independently as possible. What advice do you have for health and social services professionals that will help them to improve their understanding of people who have Autism Spectrum Conditions?

DONNA:
Wow, which taboos should I start with? OK, in my case, there are certain things which make parts of life difficult. I’m face blind, but that can be adaptable as long as nobody takes my inability to recognise people as a personal insult when I turn away from apparent strangers waving to me or have more social phobia than most people. I’m relatively context blind, and often fairly object blind in new environments, so as long as I’m in familiar space, that’s not too big a problem, but it can reduce some independence skills… for example, I lose the visual meaning of things a few seconds after not touching them if they are not moving and sometimes even if they are. That can mean fire and flood risk. I’m intermittently moderately meaning deaf. So those who care enough to accommodate that would dramatically slow and simplify their speech, keep it in bullet-point form, use gestural signing and representational objects and I’d be able to keep up more fully, for longer. I struggle to internally mentalise and so can’t answer what I might feel, how two choices might compare, things like that and struggle to simultaneously process a sense of self and other, which can be problematic. But represent them with objects in front of me and I can mentalise externally quite well, even theoretically hold a sense of self in relation to other that way. I don’t cope at all with being touched unexpectedly or socially as I can’t visually tell what has touched me and physically it takes me a few moments to register what has happened, so it’s a pretty big no if you don’t want a negative reaction. Otherwise, as long as my medication is on board my tics, bipolar, OCD and exposure anxiety type challenges are pretty minimal and other than being GF/CF, low salicylate, low sugar and on a rotation diet with nutritional support for gut, immune, metabolic disorders, all people have left to cope with is some minor remnants of Post Traumatic Stress stuff from a challenged past and some attachment challenges from having had lots of disturbance and loss in that department in my first four years of life. The rest is just my somewhat naturally solitary/autistic personality!
And that’s where it gets interesting. Because other people with ASCs have their own ‘autism fruit salads’ and theirs can involve things I haven’t had to tackle much. Like I am mildly dyspraxic (motor planning problems) and have the remnants of hypotonia (low muscle tone) but for others these physical co-ordination, fine motor skills and physical endurance issues are staggering and physio is a must. I have never had significant oral dyspraxia, meaning other than a slight problem with ‘l’ and ‘s’ my speech is clear. Others can be unintelligible and will need typed communication.
I’ve fitted Semantic Pragmatic Language Disorder, so making language with meaning was a big challenge I’m mostly conquered except when under big stress but others will have Speech Apraxia which may improve with extensive speech therapy or be compensated through typed communication.
I’ve dealt with and come through months and weeks of Selective Mutism but others have been struck with this for years and without typed communication will stay speechless.
I’ve always been extremely autonomous but others suffer from extreme learned helplessness which my personality wasn’t prone to and my environment never reinforced. Without recognising that and its difference from ‘autism’ people with severe learned helplessness will never challenge themselves and their families will never push them to.
I’ve seen malingering in some adults on the spectrum who have got away with doing only the things they like to the point they consider themselves ‘unable’ to do anything else. That’s an environmental challenge and a personality one. And that and learned helplessness are big taboos in the autism world but as a consultant I’ve seen families turn these around where older children and adults thought unable to walk, self feed, speak, self toilet, wipe, climb stairs, open handles, wash, have done so once the environment was taught to play stupid, play ignorant and deliberately get things wrong. So that really taught me something.
Similarly with Exposure Anxiety, I’ve seen those crippled by chronic involuntary avoidance, diversion and retaliation responses, be able to do so much more once the environment stops watching, waiting, wanting.
And seeing these psycho-emotional aspects of autism change within months of altering the environmental approach taught me that not everything called autism is physiological or sensory-perceptual. Reactive Attachment Disorder is another one, a big taboo. But how do people imagine that an infant who can’t recognise faces, can’t read facial expression, body language or intonation, is meaning deaf, can’t hold a simultaneous sense of self and other, and has jumbled processing of touch , manages usual ‘bonding’ with parents? Why is it taboo to discuss Reactive Attachment Disorder in those with ASCs without this being an instant ‘blame the parents’ issue? If we were free to talk about it we could talk about people’s difficulties with intimacy, with emotion, with losing control or why some people become more attached to objects and routines than to people.
Why can’t we talk about personality disorders in children including psychopathy and narcissistic personality disorder in which inability to empathise can easily be called ‘autism’?
Why can’t we face how severe untreated co-morbid mood, anxiety and compulsive disorders which are too severe for most adults to manage, can shut down and limit development in infants who inherit or develop them?
So the advice is let’s get past the taboos and we need to recognise we have a fruit salad dynamic at work in most children diagnosed on the spectrum and the job is to evaluate the nature of each fruit salad in order to implement the individualised program for each person. Obviously that means recognising there is no ONE Autism, no PURE Autism and no ONE magic bullet or approach.
Can many more people with ASCs manage a degree of autism-friendly employment, self employment, occupation, social involvement and supported independence once their challenges are understood and adapted to? I believe so.

PAUL SWANN:
Many thanks Donna for your insightful responses, from which I’ve learnt a lot. As a final question to round things off I wonder, if you had a blank canvas or page in front of you right now, what would you like to express? A poem perhaps, or something about the creative process that you experience? Please feel free to share whatever you’d like to, and thanks again for helping me to gain a better understanding of the Autism Spectrum.

DONNA:
Hmm, as a writer, composer, sculptor, painter, I jump between computer keyboard, piano keyboard, clay and paint. I can never tell which I’d find myself at at any given time.
So today, for example, I worked on a recent film script, then began working on some lyrics to a song, then reviewed some poems for an upcoming poetry collection, then spent time in the garden (my other creative space). So all my space is largely solitary and creative.
And what would I do if I had a blank canvas or page in front of me right now? Well, right now is right now and I only see the words as they come out into what is essentially blank space. Just realised I don’t actually experience a blank page, just blank space, which can be in the line I’m on or that I have the whole page to myself, it’s all the same to me…it’s as though the line itself may as well be a page for it is all there is until each word fills it.
I don’t even know if there is a concept of blankness, more there is a concept of openness, and it is into that openness that I unravel in a series of ways. I remember too, in Everyday Heaven I think it may have been, that I wrote of seeing colored lines against white and thought of moving into it, but was stopped by the friend who was with me. We were in an art gallery and I was about to walk into the painting… it was to me only colours on white and she said, “Donna, do you like the painting of the lion?” and suddenly the colors on the white became a picture, a picture formed through the power of her words, and yes, the colored lines formed a lion and the white was a canvas and I was in awe that SHE could do such magic, bring the world into being like that, or at least her world.
So I can’t imagine what I’d do except that I’d find myself doing it. I can’t imagine with my mind, I imagine through my hands. Just as a mind must see to imagine. My hands have to contact something to bring to life the creativity through them. I often wander into the spaces where they can do that, so right now I’ve wandered here, to the computer keyboard and my hands are letting words through into space remaining on a seemingly blank line.

Donna Williams, Dip Ed, BA Hons
author, artist, consultant and public speaker
http://www.donnawilliams.net

Together with Gill Fairclough from the Centre for Disability Studies at NE Wales Institute of Higher Education, Paul Swann has organised an upcoming presentation called Autism As A Fruit Salad in the context of the “culture versus cure” debate on autism. The evening lecture is set for Tuesday 9th September 2008 with details here.