A student named Kim Fairley had read several of my books and ws writing a paper on The Development of Autism.  She asked if she could ask some questions.  I agreed on the basis I’d publish it as an interview for the benefit of others.  Here’s the interview:

KIM FAIRLEY
1. In Nobody Nowhere you talk about Carol and Willie, who you describe as your “other faces to the world”. If I’m understanding correctly, they seemed to be aspects of your personality (i.e. self-control in Willie and sociability in Carol) that were absent, but that were needed in order for you to be able to cope with life. You also discuss these characters with Caiseal Mor, who had a similar experience. Caiseal and yourself seem to have two major things in common: you both have autism and you both endured a traumatic childhood. Do you think that this splitting into different characters is a common feature of autism or do you think it was a coping mechanism that occurred in response to the trauma, as in dissociative identity disorder?

DONNA WILLIAMS
Caiseal and I have several other things in common.  We both deal with mood, anxiety and compulsive disorders, are both face blind, both have some degree of meaning deafness, both experience life as split brain people and are both extremely vigilant, exuberant, artistic and idiosyncratic as personalities.  So I think you could attribute splitting to many things, the isolation of face blindness and Alexithymia in people who struggle to ascertain their own sensations and feelings, the entrapment of people with Exposure Anxiety, a part of creativity in somewhat Schizotypal people, a manifestation of a split brain state in conditions like Dyspraxia and neurological differences interfering with the cohesive functioning of the brain.  And systemic abuse in early childhood will only make any of these things worse and add PTSD to the mix.  We also need to consider the likelihood that autistic children are born to parents with various aspects of autism themselves, including complications like co-morbid disorders, personality disorders and self medicating leading to addiction, conditions which might put their children at greater than usual risk.
In my own case I think the mania aspect of Carol was influenced by manic states in Rapid Cycling Bipolar.  Her utter flippancy and detachment I can see as related to Alexithymia.  Her origins came about through echopraxia combined with face blindness when I saw my reflection as another girl who had the actions of the child (the real Carol) I’d met in the park.  Then I think Exposure Anxiety reinforced the use of Carol as a tool where I was unable to dare expression as myself.  The fact I lived in a highly threatening and disturbing environment reinforced the use of the Carol persona as a survival tool in avoiding institutionalisation.  I can also see a lot of really echolalia, echopraxia and disturbed ABA style compliance manifesting in the Carol persona; smiling or letting people touch me just because they found it acceptable.
With Willie, I feel there was an influence of Alexithymia which mind was often split from emotion.  I think there are aspects of Reactive Attachment Disorder present in both the Willie and Carol states but I equally question how well any child with gut, immune, metabolic disorders, co-morbid mood, anxiety and compulsive disorders since age two, meaning deafness, meaning blindness, body agnosias and face blindness could have bonded with carers.  There is a strong history of Coeliac, Dyslexia, Bipolar, ADHD and a number of people with Aspergers and another with autism on my father’s mother’s side where there were two generations of first cousin marriages, so we can’t put that down to trauma.  On my mother’s side there is colitis, several suicides, depression, agoraphobia, OCD, addiction and several generations of alcoholic mothers and its hard to put all this down to trauma either.

KIM FAIRLEY
2.Does Carol or Willie play a part in your life currently? If not, when did they stop existing and why do you think this happened?
DONNA WILLIAMS
Since treatment for gut, immune, metabolic disorders, since Brain Gym and Cranio Sacral Therapy and Mc Timony Chiropractic and Dreamwork Hypnotherapy, treatment for mood, anxiety and compulsive disorders and adaptations for sensory perceptual and language processing disorders as well as a much healthier gathering of people around me, I am no longer functioning in the disorder proportions for my personality traits.  My brain works in a more integrated way and through arts I can usually fathom my feelings and thoughts in ways I can’t do internally.  All of these things mean that whilst I’m still something of a ‘patchwork quilt’ I’m now very much one quilt.  I still have distinct Carol or Willie moments but they are pretty short lived and while compulsive and preconscious I’m definitely aware of them at the point they are coming out.  I see them as parts of my selfhood, just out to the fringes.  I’m definitely a broader personality than most I’ve ever known.  Sometimes that’s disconcerting, but I also enjoy the color.  I’ll never feel my personality is underdeveloped.

KIM FAIRLEY
3.There are many different theories of development for autism. You mentioned in Nobody Nowhere that you do not think that your upbringing and childhood experiences caused you to develop autism, which is consistent with research stating that characteristics of parents are not major factors in the cause of autism. Being that you are a scholar and also a person with autism, do you have any insight into what caused you to develop the disorder? Are there any theories of development that appeal more to you than others? Do you have a theory of your own?

DONNA WILLIAMS
First, we are living in ignorant times.  We are labelling everything autism the way we labelled everything ‘disturbed’ in the 70s or ‘psychotic’ in the 60s.  There are clearly different pieces of ‘autism-related fruit salad’ (which I wrote of in The Jumbled Jigsaw).  Those combinations will differ from case to case and in every case interact differently with each person’s unique collection of personality traits and their sensory, communication, learning and social-emotional environment.  So I guess I have a holistic and Sociological picture of autism.
In my case I believe I am brain effected by a combination of things.  Being the offspring descended from 2 generations of first cousins I believe lead to incredible artistic strengths but significant genetic weaknesses including gut, immune and metabolic disorders which would ultimately cause a cascade effect.  I believe being born to a parent with substance abuse and other issues is not good for a child’s early development.  According to my aunt I was subjected to two doses of Quinine before birth.  This substance was used in the 60s when abortion was still illegal and was known to damage the nervous system of the foetus and cause abortion.   So I think some of my issues were genetic, others environmental damage and others were the progressive cascade effect of gut, immune and metabolic disorders.  The latter, I believe effected brain nutrition, toxicity, brain scarring and tics, imbalanced brain chemistry associated with mood, anxiety, compulsive disorders, impaired neurological integration and resulted in sensory perceptual, communication and cognitive challenges.  I also can see that I had happened to inherit relatively ‘autistic’ personality traits which predisposed me to responding to my challenges ‘autistically’.  So mine is the ‘fruit salad theory’ of autism.
I don’t feel all people with autism have my combination but I have met many who do and just living with a ‘fruit salad’ helps me understand the varying ‘fruit salads’ others live with.

KIM FAIRLEY
4.Do you think there is a biological basis to autism?

DONNA WILLIAMS
Dyslexia, ADHD, bipolar, depression, Coeliac, Colitis, agoraphobia, Asperger’s, Autism, hives, asthma, eczema, addiction, and epilepsy have all been diagnosed or treated in members of my extended family.

KIM FAIRLEY
5.       You mention that you also experience various other conditions? Could you please describe them? Do you think they are separate from your autism or are they a function of it in some way? Are they all constant or do they affect you intermittently?

DONNA WILLIAMS
I’ve got diagnosis of autism, language processing disorder, visual perceptual disorder, gut, immune, metabolic disorders, and am medicated for mood, anxiety and compulsive disorders.  I identify with faceblindness, visual, social-emotional, body, visual-verbal, auditory verbal and auditory agnosias which have all been identified as sensory perceptual disorders as part of my ‘autism’.  I’ve also been identified as having hypotonia and a degree of Dyspraxia.
I relate to Dyslexia as I jumble some letters and numbers and have very little sense of left versus right and often confuse opposites.
I relate to Alexithymia and can see many phases of my life where I’ve functioned in the disorder proportions for my personality traits – solitary, vigilant, idiosyncratic, exuberant , self sacrificing.  My personality behaves ‘autistically’ under stress.  Difficulty processing emotion, inability to mentalise about emotions, my health and sensory perceptual issues all contribute to information overload and stress which play havoc with co-morbid challenges and my the level of my personality traits.
So its quite interactive and shifting in there.  It’s very hard to view each piece of ‘fruit salad’ without seeing how it interacts with the other pieces in the fruit salad.  In that sense no one piece is my ‘autism’, the entire fruit salad combines as the sum total of my autism.  But even without all the fruit salad, if all there was was my personality I’d still be ‘autistic’ but I’d say that’s ‘autistic’ as an adjective, not autistic as a condition.  So for me, for autistic to be a condition, not just an adjective, it really is about navigating disability caused by an overwhelming amount of ‘fruit salad’.  But others might see their autistic personality as their condition and stress that anyone would was to treat it or cure it.
I don’t like the idea of cure because in my case we’d have to wipe out the inbred nature of the gene pool I’m from and that stinks of eugenics and disregards the personhood and wonderful range of abilities of those who are from that line.

KIM FAIRLEY
6.When I present this interview, what is the single most important thing I can tell my audience about you?

DONNA WILLIAMS
Every person with autism is different so see past stereotypes both old and new and never forget autism is a dance between personhood and condition so never forget the person.

For more information visit my website at www.donnawilliams.net