Atypical Anorexia: Facing an Eating Disorder, Autistically

Written by Ginny Grant

August 2019. I sat in the sun-filled waiting room of a private eating disorder clinic. I pulled my coat closer against my body. Even in the direct sunlight on this warm winter’s day, I felt a chill all the way to my bones.

My right hand and leg began to shake uncontrollably, a sure sign of the anxiety that flooded my brain. I pressed my arm to my leg to quell the tremor as I tried to complete the new patient form. But now the words were bouncing around the page.

I glanced fleetingly at the other clients in the waiting room. Not an emaciated teenager in sight. What did an eating disorder look like, anyway? I could not have guessed that any one of the clients I saw that day was suffering a cruel, relentless eating disorder. I could not have guessed that I, a mother in her late thirties, would suffer a cruel, relentless eating disorder.

Just seven months earlier, I had learned of a nutrition and exercise tracking app, which became an immediate obsession. I recognised instantly that the app gave me all the information I needed to finally shift the unwanted weight that had crept onto my body with motherhood. And I did so with unwavering dedication, logging every morsel and sip I consumed. Within days, I could feel the weight starting to disappear from my frame, which only spurred me on to restrict my intake further in order to reach my weight-loss goal. But as the months passed, that goal lowered almost continually, until at last I had admitted to my GP that in fact there was no end goal. Quite simply, I just wanted to, needed to keep getting smaller. I had told her about the numbers, too. Calories, macros, food measurements, body weight – numbers pinballed through my mind all day long.

Those numbers meant everything to me, but they had taken over now and it was exhausting.

The psychologist greeted me warmly and led me into her room for my appointment. I mustered a half-smile. As I took my seat inside her room, the hand and leg tremor stepped up a gear. Next I unravelled completely.

Officially, I had an Other Specified Feeding or Eating Disorder, OSFED for short – essentially an atypical presentation. I would be treated for the eating disorder that most resembled my behaviours: anorexia nervosa. At this point, she explained, the only thing keeping me from an anorexia diagnosis was I was not yet medically underweight. She emphasised that my case was severe. Of all mental illnesses, anorexia nervosa has the highest mortality rate. If I continued down this path, I would lose my life. It was this particular – and rather shocking – detail which jolted me to attention.

According to the psychologist, I was experiencing starvation syndrome: my body had slowed its secondary functions, and I was now ‘cognitively impaired’. My mind flashed to those bouncy letters on the patient form, to the way words kept slipping from my grasp when I needed to communicate and how my thoughts jumbled together. I nodded tearfully. The pattern of behaviours that had led me to this point needed to end straightaway, she urged. In order to recover, I would have to restore some of the weight I had lost. It would not be easy. At times it would be very scary, she said.

A question niggled at me. How could this have all happened so suddenly, and at this midpoint in my life? The hard truth – which I only recognised fully later – is that while eating disorders can affect anyone, some people are more vulnerable than others, due to a number of psychological and socio-cultural factors.

And it turned out I was among those more vulnerable people.

In recent years, a significant overlap between eating disorders, particularly anorexia nervosa, and Autism has been noted by researchers. I had seen this link drawn in several articles which had crossed my newsfeed, and an inkling that I’d sat with for several years – that I might be Autistic – had been strengthening in my mind.

At the end of that first appointment I told my psychologist that I believed I was Autistic. I explained that I had booked an Autism assessment, which would take place the following week. She did not question it, nodded gently.

One week later I was assessed at a separate practice that specialised in Autism. I apologised to the clinician for the shakiness, the muddled words and thoughts, said I had wondered whether I should go ahead with the assessment in my fragile state. ‘I think it was an excellent thing you came today,’ she told me. Because it turned out that I had aced those tests they had made me do … Autistically. The clinician identified me as Autistic that same day.

She reaffirmed that eating disorders commonly occurred in Autistic people, along with anxiety, OCD and various other mental health conditions.

My Autism diagnosis would inform my eating disorder treatment, she said, and help others in my life to understand me better. I had many strengths to offer, she said in closing, strengths that undoubtedly came from me being Autistic. And then this: ‘The world needs Autistic people.’ Cheers to that.

In light of my shiny new Autism diagnosis, my eating disorder psychologist diverted from her usual approach. She now understood that changes had to be made slowly and supported closely. And gradually, she helped me take the steps required to heal. The numbers on the scales began to climb as I increased my food intake, restoring weight that had been lost. The shakiness decreased. Words came more smoothly. My thoughts were less jumbled. Indeed, it was not easy and at times it was scary.

Reflecting on my rapid descent into this cruel, relentless eating disorder, it is now clear to me just why being Autistic made me so susceptible to it.

Many Autistic people find comfort in rules and rituals. With my app, I had all the rules of weight loss at my fingertips and the resolve to follow them without compromise.

Many Autistic people care deeply about details. A book editor by profession, I am highly observant and have long believed that the small stuff matters very much. I was committed to tracking every gram I ate, every millilitre I sipped – of course those details were important.

Many Autistic people cling to control in a world that is often wildly unpredictable. At a time in my life when so little felt simple or straightforward, I had clung to the control that restriction offered me.

Just opening the app on my phone to see how much (or rather little) I had consumed, how many steps I had taken, and the ever-decreasing line on the body weight graph, gave me a sense of control.

Many Autistic people have an acute, or alternatively a lack of, awareness of their body’s internal cues, or interoception. Personally, I have a heightened sense of my body’s cues. I have never been comfortable with the feeling of a full belly. While restricting, I soon discovered that the pangs of hunger I felt through restriction brought me a sense of calm. Later on, when my hunger signals had almost disappeared, I found that the peaceful nothingness of an empty belly helped me to feel calmer still.

Many Autistic people eat only a limited repertoire of foods. I have long loved simplicity in foods. While I do enjoy various dishes and cuisines, I will always go back to the comfort of very plain, familiar options. Repetition is not an issue for me. Existing on not much more than porridge, yoghurt, almonds and coffee suited me just fine.

But all of that needed to change of course, and it did.

One year later, August 2020, and thankfully, I am a long, long way from that weakened, confused person who sat in the waiting room that day. A friend told me recently, ‘You’re so much more alive than you were last year’ – this is true. I am proud of the progress I have made. The recovery work is ongoing. There are still times when anxiety overcomes me and those familiar, destructive behaviours seem to offer all that I need, but I have learned to keep those urges in check.

And as I heal, I channel the strengths that come from my Autism – my ability to focus intensely on a goal, my unwavering determination, my attention to the detail, my very high personal standards – many of the same qualities that sent me plummeting into atypical anorexia in the first place – into my recovery.

In telling my story, I hope to increase understanding and encourage others who might be heading down a similar path to seek help early and not to give up on recovery.

If you are concerned that you may have an eating disorder, please see your GP. The Butterfly Foundation in Australia has excellent resources and support, including a free National Help Line: 1800 33 4673.