Donna Williams’ Blog

Ever the arty Autie

Let’s Stop Calling it ‘The Autism’ – Adipsia and Anorexia

August4

Maybe sml Sense of thirst and hunger are so taken for granted by most people that its hard to work out how we actually develop these things. Of course we have to have the neurology that makes that possible, primarily things like hypothalmus function which drives the messages and urges to drink or eat, but also perhaps the cerebellum which takes those messages and helps us to process them for meaning. But sense of thirst and hunger can also be a cognitive function, part of an information processing capacity, part of a developmental disability or part of a missed step in early neurological, behavioural, social emotional and communication patterning. My sense of thirst and hunger have probably been gone a long long time, but to understand where they went I have to look at what opportunities they have to develop in the first place.

Whilst there are others diagnosed with autism on both sides of my family who were not welfare cases, I was. That’s just how it goes, some kids with autism are born to equally challenged parents, some are not. I was.

I was born to a violent, alcoholic mother who had attempted abortion twice with Quinine. It had failed, she got stuck with me, I was taken home and for my first 6 months my father, aunt and grandmother sneaked into my room to feed and change the child I was told they’d been ordered by my mother to ‘leave to die’. According to my father and aunt, I was left soiled, covered in sores, that my mother insisted nobody pick me up or speak to me, and when my mother did leave me a bottle she never heated it and progressively put gin in it to keep me asleep. I have memories from that room, from around 6 months old to when I slept in a bed from age 2. I do remember being overwhelmed by the texture and smell of feces, the strong stench of urine (smells stay with you) in that cot, the silent stillness of the room, the lengthiness of a day between visitations, the novelty of sunlight through the frosted window.

As an ‘at risk’ infant I’d been at a care centre from 9-5 M-F from 6 months to 2 and a half years old. There I was used to being fed and watered on schedule so my own body messages, if I’d yet developed awareness of them, would have been fairly irrelevant to that schedule. At Mrs C’s down the street where I’d been left since 6 months old, I was given food and drink until I was 3 when she finally had to cut the ties as I had bonded with her (and my grandparents) but not at all my own mother. But that was being fed as and when whilst she cooked or fed her two children, much as one fondly feeds bits and pieces to a familiar stray. So whilst it was patterning in the sensory interest and social equality associated with food it had little to do with developing processing of hunger or thirst. As a kid I was happy to drink tea and have biscuits with my grandparents in the shed they lived in in the back yard. It was a safe place, good associations, good modelling. But I was only out there when not locked into my room, so it was not reliable and it wasn’t like I could develop a sense of thirst/hunger = go to the grandparents’ shed.

I was meaning blind on account of being unable to visually process my world cohesively until I got therapeutic tinted lenses in my late 20s. Instead I saw my world bit by bit, so food was not easy for me to distinguish unless I saw people eating it. I had to smell everything, touch everything, sometimes waggle things to get some sense from how things moved, and from that I’d recognise things better, including food. Being meaning deaf until late childhood, the connections between visuals and words also didn’t happen for a long time.

I was alsoecholalic and echopraxic, and the echopraxia took the form of automatically mirroring my older brother’s movements as if we were one person. I felt I was lending his patterning, that without this I wouldn’t do things… I wouldn’t drink or eat unless someone else initiated the same for themselves. It didn’t easily occur to me to seek it. I did have favorite textures and tastes, that was unaffected, and I would seek those out, but when it came to meals I didn’t get to those until late childhood (I wasn’t growing, had infections regularly, signs of nutrient deficiencies), and then only by force. I met that force with retaliation, sticking my fingers down my throat for the next two years to vomit up THEIR food. Without volition being made to eat felt like abuse. Eventually I was set free to eat with my mirror reflection and with someone familiar and trusted to watch eating (I’m faceblind) I could eat a meal – success!

At primary school for the first three years we had milk every day and I had the teacher watching over me, making me drink it and all the modelling of the class of kids doing so. At lunchtime I had the same lunch every day, chips and potato cakes, probably because I was routinized and could recite by rote ‘five o chips, five o cakes’ and hand over a 10 cent piece (yes, cheap in those days!). I don’t remember clearly whether I had a sense of hunger back then but I did have salt craving and I associated that with the chips. I was also very cold, with terrible circulation (I have Ehlers Danlos Syndrome) and was never dressed for the weather so what I craved about the chips was to hold the warmth of the parcel against me like a hot water bottle. For the 7 years of primary school my lunch didn’t vary and I was given no money for a drink so never developed awareness one has one with a lunch. I did play at the water taps and enjoyed spitting water at anyone, everyone so also swallowed it and if I was with someone who drank from the taps, I mirrored them automatically.

Because we had lemonade delivered in every possible flavor, by the crate, and my older brother modelled drinking it with gusto, I competed, enjoying the tastes. Following him, I had jelly and flavored ice blocks and ice cream and once habituated I was getting enough fluids to survive but not enough to avoid daily laxatives for constipation so severe I would sometimes vomit bile.

From around age 9 I had pica and was eating plastic, paper, bark, leaves. This lasted until I was 13, so there was not a clear differentiation for me between food as textures and objects as textures. I had a zinc deficiency that was picked up when I was 10 which would not have helped, but the patterning was far harder to shift. By age 10-11, I was taught to care for pot plants, to water them, and then water myself. I enjoyed watching the dog biting water as it flew from the garden hose. So I graduated to giving myself water, especially from the garden hose.

I don’t remember my stomach gurgling for food or my mouth watering from the smell of other people’s food or my own. I do remember a gurgling stomach, but with gastro or food intolerances. I remember my mouth watering when I ate sherbet or had Fruit Tingles or later lemon gelati, but otherwise the only time my mouth watered was in warning I was about to vomit. So I largely associate that with being ill, not hungry.

Perhaps part of lacking the cognitive connection to thirst and hunger was that I didn’t develop functional speech until late childhood and even then it took until my teens before I could talk not just at or in front of others but gain the rudiments of interactive speech. And without that, how does one reflect on one’s feelings and sensations, develop any memories of asking about or sharing those sensations?

By the time I reached adulthood I was patterned enough into drinking and eating when others did that I didn’t notice too much that my sense of thirst and hunger were poor or absent. I remember being thirsty and hungry when I was homeless in my teens and had gone several days with little food or drink. So it did exist back then, if the body was deprived enough.

In my 20s I was told ‘you eat when you’re hungry’. I decided to wait to be hungry. I waited my way through day 1, day 2, day 3 and on day 4 when I was extremely cold, had tremors, blurred vision, was wobbly on my legs and my brain was dizzy like someone drugged, I ate an apple, then realised from the reaction of my body that it had been starving. Of course I knew this theoretically, but I thought maybe i was superhuman or something, because where was the message telling me to eat?

But being largely sensible and logical I learned from that that I should only do that if I want to die and that it is best I just take my cues from those around me and eat and drink when they do.

When I met Chris I was in my 30s. As an artist it was common for me to go the whole day without a drink or food. I found eating and drinking irrelevant, distracting, time consuming and futile… after all it just all ended up in the toilet, what was the point? This was especially so since being on a sensible diet because of food allergies, food intolerances and deficiencies. If I could have had chocolate or chips all day or been free to drink green lime cordial I might have snacked away on those without a problem. But without those it was a chore to remember.

I learned to time myself when others weren’t around… that I had to eat and drink at certain times. I did this fairly well when I could remember and was in a good mood. But when it was a rough week or if I had a project keeping me busy, I couldn’t get around to it.

I never put weight on, had to work hard to keep it on, and I never had a problem with being either skinny or having curves. I was fine with my body either way. I saw some weight as a healthy thing, an achievement if I got some. I liked to look healthy. So although I’d done two years of vomiting in late childhood, I had no Anorexia Nervosa and so couldn’t understand why I had so little drive to eat.

But Anorexia Nervosa is not the same as just Anorexia. The former is a mental health disorder, the latter is a neurological or developmental/information processing one. It wasn’t until I did a fluid deprivation test recently for Diabetes Insipidus (conclusion was my polydipsia was part of my having autonomic neuropathy) that I realised I had absolutely no urge to drink or eat. I arrived for the test at 8am and started the test at 9am. I had eaten at 7am and had a drink at the same time. By 11.30pm I had done 14 urine tests, 14 blood tests and not eaten or drank all day. I had peed until there was nothing left to pee and my blood couldn’t give up any more water. I waited to be thirsty or hungry but it didn’t happen. When discharged at 11.30, Chris rewarded me with a cake. I took a small bite. He got me a cup of water, it was 200ml. I drank it. The nurse offered me more water. I had lost 3.5kg in fluids through the day. I said I’d be fine until I got home. At home I forgot to eat or drink and set about feeding the cats and putting the electric blanket on (I wanted warmth more than food or drink). Then I remembered I had to eat and drink and like caring for the pot plant, fed and watered myself.

I had read about Adipsia and hypodipsia and discussed it with the endocrinologist. We talked about the messages and whether I had them and simply failed to process them. I reflected upon whether I’d ever had a sense of hunger or thirst, had a poor one and failed to retain it or lost it somewhere along the way, even perhaps after coming through chemo in 2011 where I had a lot of cognitive challenges during and certainly in the months straight afterwards. I couldn’t be sure if I’d ever had these senses because I did like tastes and textures so knew I liked food, liked drink, and how does one know what one doesn’t know? I think I had poorly developed messages, perhaps part of a wider challenge of Alexithymia, but at least glad I had a love of food and drink, of tastes and textures and the inclusion and equality of sharing these things with and among others.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.