In this guest blog Louise tells us about her experiences of having Autism and an Eating Disorder and the difference the Tuke Centre made to her life.
At the age of 40, I was referred to the Tuke Centre for treatment of atypical Anorexia Nervosa (AN). My AN was atypical because I didn’t have overt concerns about my weight or body shape. Nevertheless, I was absolutely stuck in a pattern of obsessive-compulsive behaviours focused around restrictive eating and over-exercising – and had been for a number of years. My weight was very low, I was very depressed and my physical health had deteriorated to a point that was incompatible with normal functioning.
For two years prior to this referral, I had been fainting frequently at work and had spent time in hospital for treatment of medical complications of malnutrition. I am a Biomedical scientist and have a PhD, amongst other university degrees, yet I simply couldn’t apply my academic knowledge practically to myself. I knew full well why I felt so ill and I knew that I was severely malnourished, but I could see no way out of the behaviours that were killing me. I felt I just ‘had’ to do these behaviours; come what may. If I tried to refrain from my diet and exercise rituals, my anxiety was so intense that I felt suicidal.
I was first diagnosed with AN when I was 12 years old. My weight was restored through outpatient support from a paediatrician and dietician – and my mother did a stellar job in helping me keep well nourished. But the picture was more complicated. At age 16 I was diagnosed with Obsessive Compulsive Disorder – a condition which the diagnosing psychiatrist suggested I had had from an early age. Even at age 3-4 years, I had displayed obsessive behaviours and extreme anxiety with change. I had routines and rituals that no-one could penetrate, which intensified whenever change was imminent. I did very well at school academically, and in some sports, but my anxiety prevented me from enjoying normal ‘kids’ stuff’, like sleepovers, day trips – and even holidays or Christmas. These things involved too much change that I didn’t seem to be able to cope with.
In addition, I felt anxious around other children and wasn’t sure how to ‘fit in’. I always felt as if they all knew something I didn’t, and I often found their behaviour confusing. Although I had a couple of friends, I found it difficult to engage with many of my peers, unless they had interests compatible with my own. I also had food phobias and emetophobia (fear of vomiting), and by age 7-8, I was convinced that eating away from home would cause me to be sick. I started to fear going to school lest I be sick, or someone else be sick. I would obsess over many things, my senses seemed unusually powerful and I was easily distressed.
When puberty struck, my anxiety became intolerable. It was a huge mental intrusion to see my body changing shape and to take on new functions. A group of children started to bully me at school, calling me a geek because I was quite studious. A male teacher, whom I trusted, made sexualised comments about my body in a PE class and I ‘fell to pieces’ psychologically. The AN developed gradually. I had become involved in competitive distance running, for which I had a real talent, and found that every time I trained, I felt less anxious. I therefore started to exercise heavily between formal training sessions to control my anxiety. And then I started to restrict food. I liked the sense of control (of my anxiety) that I felt when I exercised hard and restricted my food intake. An exercise and diet regime made my existence feel more ‘ordered’ and less ‘chaotic’. Very soon I was obsessively counting calories and following a rigorous exercise plan, but despite rapid weight loss, I had no desire to lose weight. I was already a skinny child. But I craved the sense of calm that hard exercise and food restriction seemed to bring me.
I spent my teens quite socially isolated. I have always loved animals so I started to breed guinea pigs. I enjoyed tracking their growth and drew elaborate charts documenting their progress. This became quite an obsessive interest. My guinea pigs were my friends because I hadn’t a clue how to fit into ‘teen life’. The idea of a relationship frightened me and I hated pubs and clubs, where (in my mind) people behaved in a very disorderly way.
After excelling in my exams at school, I went to university to study Biomedical sciences. Again, I hadn’t a clue how to ‘fit in’. I gained three university degrees, including a PhD, but socially I didn’t develop at all. I had acquaintances, but no real friends. In my mid 20s I started to feel very lonely and isolated, and I sadly returned to my obsessive exercising and diet restriction. Again, I didn’t want to lose weight, and because I was already slim, I rapidly became underweight. Although some doctors picked up on my low weight, they never suspected an eating disorder because whenever I was asked if I had body image concerns, or wanted to be thin, I truthfully answered “no”. The real physical and mental decline happened in my 30s. There is a finite time for which the human body can sustain malnourishment caused by over-exercising and under-eating.
My treatment at the Tuke Centre was just wonderful! I was used to doctors and therapists getting angry with me because of my behaviours, which were often impenetrable. Their anger had always terrified me. But the psychiatrist who treated me was so very kind and helpful. I managed to make some changes to my behaviours and to gain weight, but after a while my psychiatrist suspected I may be on the autistic spectrum. I knew little about autism, but once I researched it online, many things fell into place. I was referred to another psychiatrist at the Tuke Centre for an autism assessment, which verified that I am indeed on the autism spectrum.
My autism diagnosis has explained such a lot about my strengths as well as my difficulties in life. People with autism tend to be detail-oriented and some become experts in their fields of interest. This was true for me in my field of science. I also like to draw and paint – in detail – and have a very good long term memory. However, I find multi-tasking very difficult. Socially, I am beginning to cope much better. I still have difficulties coping with change or anything novel, but I am trying to expose myself to things that make me anxious. With my autism diagnosis has come greater self acceptance. I was always very self critical for not being like many other girls/women and would beat myself up mentally; simply ‘for being me’.
In terms of my over-exercising and under-eating: well those have largely disappeared. I like to be physically active, but I make sure I eat enough to maintain my weight, which is now within a healthy range. I am extremely thankful for the help, support and kindness I received from professionals at the Tuke Centre. The help I received there saved my life.