After doing a lecture called The Dietary Wheelchair about the role of dietary interventions in my own journey with autism, I was contacted by Cassie Wells from ORGRAN Natural Foods . She asked if I’d mind being interviewed for their magazine and I agreed and she generously accepted the additional publication of that interview here. Here it is:

CASSIE WELLS:
Can you give me some background on yourself?

DONNA WILLIAMS:
Today I’m a painter, sculptor, singer-songwriter, author, screenwriter. I’m also a qualified teacher, an international public speaker and have been an autism consultant for over ten years working with hundreds of people with autism spectrum conditions. I’m also a person who was born to two very challenged parents, each with their own family inheritances.
My father’s side has people diagnosed on the autism spectrum as well as people with bipolar, ADHD, dyslexia, agoraphobia, social anxiety, coeliac and many artists, writers and musicians with the rest mostly in nursing and on the railways. His mother was the child of first cousins, who in turn were the children of first cousins, so both the strengths and weaknesses may have been heightened. My father would have fitted conditions like Dyslexia, ADHD and Bipolar. He also appeared not to process language very deeply and was known for his colorful but repetitive storytelling skill which he’d use with full characterisations of all he was representing or tell the stories using representational objects. He died of bowel, liver and pancreas cancer at the age of 59. He largely lived on wheat – bread, biscuits, cracker, but also extremely high salt. Many people on his mother’s side have now found they have gluten intolerance. That knowledge, had he had it may have meant a different kind of life.
My mother’s side has a history of alcoholism and addiction. Cancer is rampant with a rate of about 70% over the last 2 generations with bowel cancer and ulcerative Colitis on that side and a great grandmother who died of Diverticulitis. There have been several suicides, people with depression, agoraphobia, rage disorders, gambling addiction, criminality, and at least one cousin formally diagnosed with bipolar.
Both of my parents were from poor, uneducated, large bush families would migrated to the city in their childhoods. So as the second child, 16 months behind an older brother to a mother who hadn’t known how people got pregnant until me, her second child, you can imagine these people were not equipped.
My first six months were of neglect and abuse, (perhaps related to Post Natal Depression but also related to alcholism and it’s impact on personality). I had chronic infections, colic and jaundice by the age of 6 mths and was looked after in a Welfare centre after that until the age of 2 and a half. According to my father and aunt, I had begun to walk by then but was extremely pale, bruised from being touched, had bleeding gums, my eyelashes would come out in clumps and I appeared deaf with no response to pain and was coughing so chronically I was bringing up blood. I was put in to St Elmo’s Private Hospital in Brunswick for a 3 day assessment at the end of which my parents were told I did not have Leukemia, was not deaf, but was psychotic and was compulsively tensing my stomach muscles and coughing against that force… something I’d later recognise as a Tourette’s tic.
In early childhood, I lived on colored jelly, honey from the pot, white bread with colored sprinkles, biscuits, tins of sweetened condensed milk, celery with sugar along it, lettuce with sugar wrapped up in it and getting me to try or eat anything else involved forced compliance. I was face blind so kept losing people, I was object blind and context blind so explored object and places through touch, movement, tapping for acoustics, smell, mouthing and generally was in a world of my own. I was meaning deaf so heard speech as strings of mostly annoying music but was echolalic so could be heard repeating hour long strings in the voices they’d originally been in. I was echopraxic so would involuntarily move as my brother did but later both these things became my strengths. I developed extreme ’emotional fits’ from age 3, swinging violently between mania, terror, despair and rage up to six times a day. I was self injurious and often biting, slapping or punching myself.
By age 5 I was in a specially designed class in a mainstream school which had only 6 children in my age group and would have the same teacher for 3 years. It was designed for city teachers to learn to teach in small country schools and was called The Country Infant Room which was strange as it was inner city. When called in to address my issues after the first week, I’m told my mother’s response to being told there was something wrong with me was to threaten to punch the teacher in the face if called in for anything so stupid again. As a result I remained at the school but was regularly seen by the visiting Psych and Guidance team who were apparently behind my assessment as ‘disturbed’ which I found on my teacher’s class records when I was 12. Around age 9-11 I began to acquire functional speech and receptively understand simple sentences. This was at the same time I was put onto multivitamin-minerals, zinc and vitamin C and finally began eating whole meals.
I was treated but gut, immune, metabolic disorders after 25 years of antibiotics for chronic infections (conjunctivitis, chest, throat, ear infections) lead to a complete health collapse and chronic fatigue. I was progressively diagnosed with CFS, multiple food and chemical allergies, systemic Candida, severe reactive hypoglycemia and mild Diabetes, a functional B12 deficiency among a variety of nutrient deficiencies, no Secretory IgA and a severe white cell deficiency (both Primary Immune Deficiencies), ATP insufficiency (a cellular disorder), a genetic myalgic condition (excessive levels of inflammatory cytokines), extensive blood infection from Mycoplasma, severe oxidative stress, severe dairy allergy, gluten intolerance, and the highest level of salicylate and phenol allergy two clinics had ever seen. I was put onto a strict GF/CF (dairy/gluten free), sugar free, low salicylate, low phenol, rotation diet (yeah, what’s left!) as well as supplements, an anti candida program and a program for immune deficiency. It took years to get through the CFS and the various viruses I was carrying.
One year after treatment I was formally diagnosed with autism, though the word had apparently first been raised with my family in the early 70s when the first film about autism came out (an Elvis film called Change of Habit). I was ten at that time and my mother rejected the label completely. I was, instead, introduced as psychotic and disturbed and my father would introduce me as feral.
In my 30s I was put on a small amount of medication to manage what was left of now dramatically reduced the same childhood mood, anxiety and compulsive disorders which also dramatically reduced a burden on my health. I feel that without the dietary interventions, health treatment and supplementation, the amount of medication required to manage these issues would have been far higher. I’ve adjusted well to my ‘dietary wheelchair’ and Orgran products are part of restoring some feeling of ‘normality’ to my cupboard and world.

CASSIE WELLS:
How old where you when you were diagnosed with autism?

DONNA WILLIAMS:
In the 1950s and 60s, only 1 in 10,000 children were diagnosed with autism. Most who are diagnosed today in the 1 in 150 children diagnosed on the autism spectrum, would have been diagnosed as psychotic, disturbed or retarded in early childhood. After I wrote of my experiences in the first of my 9 published books, Nobody Nowhere, multitudes of adults and teenagers born in the 60s and 70s and labeled psychotic, disturbed or retarded in early childhood, were rediagnosed as autistic. By the time my second book, Somebody Somewhere, the diagnosis of Asperger’s had become mainstream and many who had been considered wierdos, schizophrenic or the victims of chronic bullying in childhood, became diagnosed with Asperger’s. When I was formally diagnosed with autism by one of Australia’s most experienced autism experts, Dr Lawrence Bartak (I was also later diagnosed with a language processing disorder and visual perceptual disorder by other practitioners) in my mid 20s, I asked if I was mad and was told I was neither mad nor disturbed (and today I think I ALSO had mental health issues). When Asperger’s became a mainstream diagnosis, I asked Dr Bartak if I had Aspergers and he said I didn’t because my language disorder and the cognitive impact of it was obvious and differentiated my autism from Asperger’s.

CASSIE WELLS:
Did this diagnosis affect the way you lived? Did it affect the way others treated you?

DONNA WILLIAMS:
The diagnosis of autism joined the queue with the earlier labels of disturbed in mid childhood and psychotic at age 2. So I saw all in the context of each other. The original assessment as psychotic at age 2 certainly changed how I was seen by people, their despair, desperation, but also the resolve to not get too attached to a child who might end up institutionalised by late childhood. And I think that’s terribly sad. At home, the labels psychotic and disturbed effected how others treated me. Some with sympathy, some got ‘the cause’ and would attempt to ‘break through’ to me. Some would avoid engaging or provoking me. But mostly visitors were told these labels so that if I threw chairs, hit or bit myself or headbutted them in the stomach, they’d be forewarned. I think it was partly a practical thing, but also part of solving their curiosity early and helping them not blame my mother (as the word autistic in the 60s/70s meant instant blame of the mother in those days but saying the child was psychotic or disturbed implied the CHILD was disordered/brain damaged). Being introduced as feral by my father was again a practical thing because it helped those at his workplace not approach me too much and that helped me to remain in social situations longer. It also meant they wouldn’t freak out if I suddenly shredded things or climbed up on the roof or didn’t respond to language. The diagnosis with autism happened the year before I became famous (my first and second of my 9 books shot to international number one bestsellers) so it was really a time for reflection on all that had happened and giving myself permission to drop my fierce determination to mimic the so called ‘normality’ of others. I realised it was ok for me to be open about the challenges I had, to talk about them, that it wasn’t something shameful or dirty.

CASSIE WELLS:
You say on your website that until adulthood your body was inhabited by a number of ‘characters’. Can you explain this a bit more?

DONNA WILLIAMS:
I was threatened with institutionalisation all through childhood, so I tried my utmost to act like other children and people in sit coms on TV. I would use other people’s phrases, voices and mannerisms in a desperate attempt to appear ‘normal’ and avoid being abused. Because I was faceblind I also didn’t know the mirror reflection was mine so thought it was another girl who was following me about and copied me and always understood me. I built a strong relationship with ‘her’ and she was my best friend. I would do TV characterisations at her and believed these were who she was. I privately named her Carol. I came to understand reflection in my late 20s. I also had a ‘ghost’ which was probably based on Martin Luther King who was often on the radio and TV in the 60s. This character, who I privately named Willie, had an extreme feeling of justice, was powerful, proud and wilful and sort of became my ‘higher self’. I think, given my situation, these characterisations were an essential part of surviving an often dangerous and crazy environment.

CASSIE WELLS:
What role does diet play in the stability of your world? How important is it?

DONNA WILLIAMS:
Psychiatrically, physically, congitively, perceptually essential. Eating cow’s milk is like being shot through the language and mood and visual perceptual centres of my brain. It has an LSD like effect on me, making background and foreground shift places, making halos around lights, shutting down receptive language, tumbling and slurring expressive language and triggering bipolar benders. Gluten effects me like a ‘bitch pill’ making me obsess, rant, pace, pinch and bite. It makes me dark and heightens anxiety and the feeling of external threat. Both cause me cramping, brain fog, headache (in the case of dairy, migraine). Salicylates effect me like cocaine. They fragment my visual perception, slow down my processing so have the effect of speeding everything else up and cause a kind of sensory flooding effect. Sugar makes me hyper and feeds bipolar challenges and with both salicylates and sugar I then go through nasty withdrawal and its associated cravings when coming off them again. These days, now my health is so much better, I can OCCASIONALLY have a small amount of sugar in something, but I’ve got to be careful and never escalate that. I can also now have something moderate in salicylates now and then, but never twice in any 3-4 day period. I also have to watch out for soy which I have a low level allergy to, so I have to keep that on strict rotation, try and keep it to no more than once in a 3-4 days period. I would attribute at least 50% of my progress to dietary interventions both at age 9-11 and in adulthood. I’ve written about my diet in several of my 9 published books, particularly in Nobody Nowhere, Everyday Heaven and The Jumbled Jigsaw.

CASSIE WELLS:
How else do you balance yourself and your environment?

DONNA WILLIAMS:
My husband Chris helps me cook. We have our own shelves of food but he also shares mine when I cook with it and that’s emotionally really important… to feel my food is ‘normal’ and enjoyable. When we go out we make sure I take some foods with me in case we can’t get GF/CF food in the community because that’s the strictest part of my diet. I am a strong advocate so if I’m stuck without food in the community I know how to insist on fish with no flour or batter, or how to get a kebab shop to give me straight salad and meat in some foil instead of bread, how to insist people leave sauces off my food, how to get a sandwich bar to give me salad and meats without the sandwich, to go to the supermarket if there’s nowhere that has my food and grab something I CAN eat. I have also found strong support from my friends who will leave with me if a venue won’t adapt SOMETHING for my diet. Hence venues learn they lose not just the unwanted customer who they presume is a social minority, but all who would have eaten with them. That solidarity is invaluable and helps venues think of what they COULD have instead of throwing it all in the too hard basket or claiming themselves too unqualified to even buy in some GF/CF cookies for the counter.

CASSIE WELLS:
If you could give one piece of advice to others living with autism, what would it be?

DONNA WILLIAMS:
That casein and gluten are the hardest foods to digest and chronic stress will reduce gut and immune function making gluten and casein intolerance common on the autism spectrum (renowned pharmacologist, Paul Shattock did 20 years of studying the health of the autistic population and found 80% of those tested couldn’t properly digest gluten and casein). At the same time dietary interventions are NOT applicable to all people on the spectrum but healthy diets mean healthy brains and that means better functioning, broader opportunities. Until the autism field distinguishes between those with gut, immune, metabolic disorders and those without, anyone with autism who has bowel problems, cramping, allergy rashes, asthma, eczema, recurrent infection, brain fog, headaches, muscle pains, extreme mood fluctuations, extreme sensory perceptual shifts, might consider a 30-90 day trial of gluten free/casein free diet whilst ensuring all nutrition levels have been met, to see if it helps them. I’d also say that dietary interventions can be short term for some people but have to be long term for others but that the benefits of these changes in those who need them can often far outweigh the costs and that those requiring special diets are not alone and there are so many of use we could also not be considered ‘abnormal’. In fact for some of us, our capacity to function rests on dietary interventions not as curse, but as blessing.

CASSIE WELLS:
For further information about Donna Williams, visit her website at http://www.donnawilliams.net
Thanks again for agreeing to be a part of the magazine.

DONNA WILLIAMS:
No problem.

Donna Williams *)
author, artist, screenwriter, composer.
Ever the arty Autie.
http://www.donnawilliams.net
http://www.auties.org