In this entry, Hannah, who also wrote our first blog entry released last month, goes further into the underlying factors related to her eating disorder as well as her experiences receiving care. She also explains why treatment modalities currently available are not always useful and can be harmful for autistic people, and provides practical advice and examples on how these issues can be better addressed in the future.
Some of the topics discussed may be distressing for some readers. Make sure to access support services if needed:
- Butterfly Foundation Helpline: call 1800 33 4673
- Call 000 in an emergency
It is important to acknowledge that, even for Neurotypicals (NTs), the majority of eating disorder (ED) treatment methods leave a lot to be desired. Nor are they easily accessible, due to cost and long waiting lists. However, for Neurodivergents (NDs), mainstream treatment modalities have been highlighted as mostly ineffective, if not harmful. During my first hospital admission, my psychiatrist told my parents and I that approximately one third of their patients return, having relapsed. For many patients in this subgroup, discharge is a revolving door. Ten years later, when we learnt that approximately thirty percent of people with an ED are also Autistic, and that mainstream treatments generally do not work for Autistic people, we reflected on that one third of patients who relapsed.
Most of the treatment I received in my first eleven years of having anorexia nervosa (AN) felt ineffective, as though it was only brushing the surface. But I didn’t know what I needed either - not that I, as the patient, should need to devise my own treatment. I felt I needed to increase my food slowly, while working through, understanding, and challenging all the reasons I hated myself so intensely that I believed I needed to make myself as small as possible in order to be remotely worthwhile as a person. However, I also knew that many of those affected by an ED would rather gain weight as slowly as possible – although each ED lived experience is different and fears around weight and shape are not always a factor. Every clinician told me that the body heals faster than the brain; that I would feel uncomfortable in my weight-restored body for at least a year before my brain started to heal. People who had recovered confirmed this, so I believed them. I still do. However, even after years of refeeding and therapy, I still hated myself and my body. Why was it taking so long for my brain to recover?
When I realised I was probably Autistic, things began to fall into place. It explained almost everything that had always puzzled doctors, such as my childhood colic, food sensitivities and chronic fatigue syndrome (CFS) – which have been shown to often co-occur with Autism. There were also the more obvious realisations, such as why I have trouble reading people, why I feel varying levels of anxiety when I am with people other than my family and closest friends, why I have always felt different but not understood how or why, my reliance on structure and fear of spontaneity and, of course, why mainstream ED treatment had been mostly ineffective. Below I outline the four parts of my recovery which I adapted to suit my Autism.
For me, finally being officially diagnosed was momentous. I could use the information to begin to learn how my brain works and how to organise my life to play to my strengths. I also adapted my ED treatment to that designed for Autistic patients. More importantly, simply having an explanation for why I struggle with so many everyday things, which should be simple, and why I have always felt a little bit different, allowed me to stop blaming myself. A lot of my self-hatred slowly drained away during the few months following my diagnosis - though not all of it. If I had been diagnosed ten years ago, I may have recovered from AN by now. I would still have gone through high school feeling out of place and unwanted, but at least I would have understood why, before I wasted ten years of my life desperately trying to recover from AN, while getting sicker.
Simply having a reason for why I am different, even if I can’t change it, has made the world of difference. I know I will always find most social situations difficult and will only be able to relax and be myself around certain “safe” people, but I’m ok with that. Now I know I’m Autistic, not socially awkward.
As I came to understand more about Autism, I realised just how many things I had misinterpreted as I was growing up - mostly due to my black and white thinking, logical brain, and an inability to read social cues and facial expressions accurately. For over two years, I have been revisiting events from earlier in my life, in which I thought I had offended someone, or made them angry, or that others were making fun of me. In some cases, I have asked the people involved in these situations what happened, from their point of view. For each of these instances, in which I have asked for another opinion, I discovered that I had interpreted things incorrectly. And my interpretation was detrimental to my mental health.
For example, when I was around ten years old, I would occasionally make an effort with my appearance if we were going out as a family. I might do something different with my hair, wear a sparkly top, paint my nails, or put some lip balm on - I have always been a tomboy, so these things were very rare. When mum and dad saw me dressed up, they would always smile and say “ooohhh don’t you look grown up,” often accompanied by a hug and maybe a small laugh. Being a self-conscious, shy child, I thought they were making fun of me because I was trying to look grown up, or that I had made a fashion faux pas. I was also just embarrassed to be the centre of attention. As I got older, I dressed up less and less, so I wouldn’t risk looking like a fool. If I did dress up, I pretended it wasn’t a big deal, though I think mum and dad saw through my act. When I asked mum and dad about these occasions, they said they were genuinely excited to see me in pretty clothes. They hadn’t meant to embarrass or discourage me from dressing up.
2. Opening up in therapy is hard.
During my first hospital admission, where I was part of an ED treatment program, we did different types of group therapy five days a week. Aside from the fact that having about ten people involved in the discussion made it difficult to individualise the treatment, and therefore wasn’t very helpful, I also felt anxious just being there and talking in front of the group. We were expected to open up about our deepest, most personal and secret emotions in front of people we had only known for a month at most. Add to that my social anxiety, my difficulty reading other people’s facial expressions - particularly people I don’t know well i.e., everyone in the group - the feeling that I was somehow very different and wrong, and therefore didn’t know how much I could open up, for fear of saying something too honest and outing myself as the mutant I felt I was. While it was helpful to hear others voice things I had also felt and thought, because these snippets provided me with hope that my oddness was only caused by the AN, I was on-edge throughout these sessions. Everything I said felt like a gamble; would I receive validation and support, or would I reveal my carefully concealed freak?
Even when I did individual therapy, I still didn’t feel comfortable being myself. I was worried my psychologists would think I was too weird and judge me. I didn’t voice the thoughts or behaviours I was ashamed of. I also worried they would negatively judge my body shape and appearance. Sometimes this contributed to my difficulties completing food challenges. I thought that, if I was able to eat more too easily, they would think I lacked the willpower of others who were “better” at anorexia.
Only in the last few years have I been able to be almost completely honest and open with my psychologists. There were a few factors that contributed to this:
• Discovering that I am Autistic. This discovery allowed me to look back on the things I had struggled with in life through a different lens. For example, instead of blaming myself for not understanding social cues, I learnt that it wasn’t my fault. I forgave myself and tried to be more authentic and honest during psychology sessions.
• In 2020, I started seeing a new psychologist and, due to Covid, our first six appointments were either online or over the phone. As I was alone at home while we were talking, and my psychologist often couldn’t see my face, I felt more comfortable voicing emotions and thoughts I hadn’t divulged previously.
• Since 2018, I had been reading recovery stories online and even connected with others in recovery through Instagram. Learning that others had had similar experiences and struggles, which often aren’t talked about, and converse almost anonymously, eased my social anxiety and fear of being discovered to be a freak.
• When I started seeing a psychologist face-to-face again, I had worked through a lot of the worries I found to be the most shameful. There was still a lot of self-loathing and false beliefs to work through though. However, because I had discovered that I was probably Autistic - I hadn’t been officially diagnosed yet, but almost everything I read made sense - and not a disgusting freak, I was starting to feel less self-conscious about some of my struggles and thoughts. I had also decided that I had finally proven myself. I was “thin enough” and I had been sick for long enough. No psychologist could judge me as weak, lazy, or greedy. I felt I could be honest.
3. Causes are more complex
Receiving my Autism diagnosis explained the pervasive feeling that I was somehow different at my core, and that I needed to maintain an exhausting masquerade in order to pass as somewhat ‘normal’. This process of self-erasure is referred to as ‘masking’ in the context of Neurodivergence. Before diagnosis, this unexplained feeling had motivated my constant failed attempts to understand those around me, which contributed to my low self-esteem. My inability to understand how to fit in, which everyone else somehow knew how to do without needing an instruction manual, only decreased my self-worth and increased my self-hatred.
For me, these feelings snowballed, feeding off each other and tangling into an all-consuming fog of self-loathing, which couldn’t be permeated by any number of genuine compliments. As I tried to understand my other-ness, I latched onto various somewhat plausible explanations - everything would be ok if I grew out my fringe and got ankle socks; I would be accepted if I proved myself to be funny; I just needed to make friends with a few key people; I needed to learn to dance in a ‘cool’ way; maybe my voice was too low; if I decorated my pencil case with graffiti I would be accepted; if I made new friends I would magically transform from a disgusting, dorky loser into a ‘normal’ person. As none of these theories were correct, all I did was teach myself a jumble of vague, half-formed stories about myself and life, and learnt to mask convincingly.
For me, and most other Autistic people, my ED was caused by a combination of interconnected factors, in addition to usually feeling slightly out of place and left out, without understanding why. Identifying, revisiting, analysing, and working through all these old beliefs and traumas has been a huge help in my recovery. It has allowed me to start accepting myself and stop blaming and hating myself. Most NTs need to work through their causes too, however they are usually far fewer, less complex, and more easily identifiable.
4. Recovery won’t look the same for Autistic people.
Throughout treatment, my family, nurses, psychologists, dieticians, and psychiatrists have all tried to encourage me by telling me a fairy tale about recovery. They told me I would be able to live in the moment, with no food rules or rigidity; that I would feel good about myself, with a healthy self-esteem and no anxiety; that I would be able to enjoy hanging out with friends, partying and generally being a ‘normal’ twenty something. However, I am learning that, though my food rules and rigidity will lessen, I will always have some degree of social and generalised anxiety and will never be a spontaneous person. Even when I was weight restored, adhering to my meal plan, and feeling mostly positive about recovery, I was incredibly anxious in most social situations. When I tried to be spontaneous, I felt scared and out of control. I tried to convince myself that I just needed to practice being spontaneous more often, so I could enjoy the freedom instead of worrying.
Below are the Autistic traits I was told would disappear when I recovered:
• Fear of spontaneity
• Low self-esteem
• Social anxiety
• Generalised anxiety
• Tendency to interpret negative emotions in others’ faces
• Need for daily structure
• Anxiety when plans are changed at the last minute
• Fear of spending money
• Preference for minimal possessions and clothes
• Wearing “childish” and simple clothing
• Preference for cutting my own hair
I understand it’s important to have something to look forward to in recovery, but it’s unhelpful if it’s a fantasy. I also agree that, though most Autistic people need structure, have anxiety and a low self-esteem, EDs exacerbate these tendencies. Recovery will lesson them but, for Autistic people, they might never go away. And that’s ok; there are other ways to live a fulfilling life with anxiety and a need for structure, and other ways to improve self-esteem. But recovery from an ED isn’t the whole solution. In fact, recovery probably won’t be possible without learning to accept, and live with, the Autistic traits. Weight restoration may be achieved, but true recovery is unlikely if solely based on that. I have found learning to accept, embrace and live with my Autistic traits to be much more helpful than trying to believe in a fairy tale.
Based on my own experience navigating recovery, I recommend the following:
1. Screen everyone with an ED for Autism/ADHD. It only takes a few minutes and can be literally life changing.
2. Individual psychology sessions. Though some NDs prefer group therapy - and, if that’s the case, let them do group therapy – many Autistics don’t. Many of us also need much more time to get to know our psychologists and may even need to work with a few, before finding someone with whom we feel safe. We will probably feel even more comfortable working with a ND psychologist. Some people may prefer to have sessions online, over the phone or even via online chat, at least for the first few weeks, until they feel ready to meet their psychologist in person. These communication support needs should be accommodated.
3. Most clients will have more complex and interwoven underlying factors for their ED. They will need to spend more time delving into their past and making sense of things, particularly with regards to past experiences of discrimination due to differences in socialising and communication. Prompts from a psychologist who understands Autism, reading accounts written by Autistic people, especially those with/recovered from an ED, and reading books about Autism, preferably by Autistic authors, can help us to identify and unpack our causes and triggers.
4. Work with a ND affirming psychologist and/or OT to envision recovery from the ED with Autism. Both professionals will be able to help the client understand what is realistic and how to use their Autistic traits to their advantage. A psychologist or OT who specialises in helping Autistic people navigate life might also be beneficial.
AN: Anorexia Nervosa
ED: Eating Disorder/s
OT: Occupational Therapist/s