Hannah, Part 1

In this entry, Hannah describes getting treatment for her eating disorder while an undiagnosed autistic.

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

When he was almost eleven, my brother Adam was diagnosed with type one diabetes. The afternoon he was diagnosed, he was admitted to the state children’s hospital, where he stayed for a week. During this time, the nurses and doctors stabilised his blood sugars, educated him, mum, and dad on how to live with diabetes, and taught them how to inject insulin - mum and dad even had a go at injecting themselves.

When I was seventeen, I was diagnosed with anorexia nervosa. About a year later, my body mass index (BMI) met criteria for a forced hospital admission. I went on the waiting list for the only hospital in the state that treated eating disorders. Just over a week later, a bed became available. During my nine weeks in hospital, I gained weight and self-hatred. We had two compulsory sessions of group therapy each day. In hindsight, I believe the main purpose of these was to fill our time and to enable the hospital to report that they were offering therapy. As we engaged as a group, the therapy was very general and felt superficial, and no one was given the opportunity to work through their individual triggers and trauma. I left hospital having made up my mind to lose weight again as quickly as possible.

For about two weeks after Adam was discharged, one of the endocrinologists from the hospital called each night, to talk through his blood sugar readings for the day, and to prescribe his insulin dose for that night and the following morning. This continued until mum and dad felt confident working out the dosage themselves. Adam also had regular appointments with an endocrinologist and the opportunity to go on camps with other type one diabetics his age during the school holidays. While on camp, they did all sorts of fun outdoor activities, such as abseiling and water sports. The nurses and doctors on the camp monitored everyone’s blood sugars and insulin injections, even during the night.

About a week after I was discharged, I had an appointment with my psychiatrist, who also ran the eating disorder program in the hospital. He recommended I take a particularly strong medication for my acne, because “it’s quite bad and you’re starting to get some scarring, which won’t ever go away.” Not a great thing to say to someone whose self-esteem is so low they chose to starve themselves. I already knew that a common side-effect of the medication I was prescribed was depression; a quick Google search told mum that it can also cause a loss of appetite. Even I agreed it was a bad idea for me to take the medication. A few weeks later, my name came to the top of the waiting list at an outpatient clinic which treats eating disorders - about six months after my general practitioner (GP) had sent them a referral. I had weekly appointments with a psychologist there for almost two years.

When insulin pumps became available in Australia, our family's private health insurance covered the full cost. A diabetes educator at the hospital spent two hours with Adam, mum, and dad, teaching them how to use it. About a year later, Medicare started subsidising his pump supplies, so mum and dad only paid a fraction of the actual cost. Every four or five years he upgrades his pump. New pumps are released all the time, as research allows them to be smaller, easier to use and more efficient. He is often given blood sugar level (BSL) testing machines free of charge, as the manufacturing companies know they will make money when he buys consumables for the kit. When he was diagnosed in 2000, we had to wait twenty-five seconds for the BSL machine to analyse his blood. Now, it is almost instant.

In comparison to my brother’s mostly positive experiences receiving healthcare services for diabetes, my experiences of receiving treatment for my eating disorder as an autistic person felt very different. When new treatment methods are developed for eating disorders, many hospitals appear to be unaware, or choose to ignore them. For example, when it was discovered that up to 37% of patients with anorexia nervosa are autistic, and that mainstream treatment methods are ineffective for these individuals, researchers and clinicians in the United Kingdom began adapting their treatment model to suit the sensory and social needs of their autistic patients (see Peace Pathway). Yet, to my knowledge, very few hospitals and clinicians screen eating disorder patients for autism in Australia, even though the conventional approach to treatment is often ineffective, if not harmful, to autistic patients. It takes a few minutes to screen for autism and some tests can even be accessed online.

After another seven months wait, my name came to the top of the waiting list of a newer outpatient eating disorder clinic, which claims to be at the forefront of eating disorder treatment in Western Australia. In my first appointment, I told my psychologist that, after hours of reading and talking to other autistic people, I felt that it was highly likely I was autistic. She never addressed this, though a diagnosis should have completely changed her approach to treatment. In addition, this dismissal meant it took yet another few years before I finally received a formal autism diagnosis.