Autism, ARFID & Anorexia
This weeks marks Autism Awareness Week 2023, so we wanted to sit down with Alfie Ward (@enabled.disabled) to speak about their experience with autism, ARFID, anorexia and other aspects of their life.
Q: Tell us something about yourself! e.g. where are you from, what do you like doing, what are your interests?
A: Hi, I’m Alfie I’m a transgender male, physically disabled, mentally ill and autistic. I’m extremely interested in activism and advocacy for those who deal with the same issues as me. I also love doing Lego and to be honest I have special interests that change regularly, I get obsessed with something and learn everything about it. Recently that has been crystals and nail varnish, very random I know, but my brain can be a strange place.
Q: What diagnoses have you received over what timeframe?
A: I have many different diagnoses that affect me in many different ways. To give you a brief synopsis I was diagnosed with dyslexia at 7, depression and anxiety at 11, and then gender dysphoria at 13. I then received my autism diagnosis at 16, and a diagnosis of chronic fatigue syndrome and functional neurological disorder at 17. After that, I received a diagnosis of anorexia and ARFID at 20 and then a diagnosis of borderline personality disorder at 21. I’m currently 21 and will be 22 in July. That’s a very quick summary but I will go into detail later on.
Q: Have you noticed any specifics about how your diagnoses interact and interplay with each other?
A: My diagnoses interact with each other in multiple ways. I have noticed that my autism has a big role in all of my conditions and is a big overriding factor in my life. I honestly believe that my autism and late diagnosis contributed to my complex life and medical problems. If I had been diagnosed earlier a lot of my problems may have been avoided. When I say this, I mean that if I was diagnosed young I would have had the correct support in my life and many of my traumas would have been avoided.
Q: How did your eating disorder develop?
A: I have had ARFID for as long as I can remember and I was categorised as an extremely ‘fussy eater’. I have always had a very limited amount of "safe" and "comfortable" foods, which were very bland, plain foods. I would go through phases of foods that felt safe, and there was a point where all I would eat was Greggs sausage rolls or would only drink fizzy drinks. I also struggled to share food, have foods touching "unsafe" foods, have food that others had touched/tampered with, and could only have specific brands with their normal packaging. If anything was out of line, it lead to extreme distress or outbursts. This makes inpatient treatment really, really hard.
The anorexia developed in an unusual way when I became extremely unwell (non-ED related), and began to fear eating and drinking. I had a lot of time in and out of the hospital, where everyone (including myself) became obsessed with my weight, food and drink intake. At this point I was diagnosed with ARFID in an out-patient facility, and it wasn't until a long time after I was diagnosed with anorexia and was admitted to a specialist eating disorder unit.
I relapsed quickly after this admission, but there were no male beds available for a few months. As a result of my deterioration, I was put on an NG tube and under the mental health act for 6 months, with 1-1 support due to my physical and self-harm risk. This admission was a really difficult time, with a lot of trauma that is still hard to process. It’s been extremely difficult to deal with being sectioned and having treatments against my will, but I know that this process truly has saved my life. I’m still currently in the hospital but I’m in a much better place mentally and physically and now want to recover from my anorexia.
During this admission, I have been diagnosed with Borderline Personality Disorder. I struggle with a lot of the characteristics such as impulsive behaviour, self-harm, unstable emotions, and a fear of abandonment. This diagnosis has made the years of my suffering make sense and has helped the medical professionals understand my complexities a lot better during this admission.
Q: How do your eating disorder and autism overlap (ARFID & AN)? How do you distinguish between traits that are part of your eating disorder and traits you need to recover from, as opposed to autistic traits?
A: My ARFID and anorexia are separate but they impact each other greatly. The way I try to differentiate the thoughts is that is whether 8-year-old Alfie would have eaten something, if then it’s an anorexic thought, but if they wouldn't, probably an ARFID thought. ARFID is related to not eating because of a fear of aversive consequences, so my illness before that caused unintended vomiting now plays into my ARFID, but I have been able to build my resilience up around that through treatment. I also use the technique of "fear telling", which allows me to assess and identify why I am afraid of something, e.g. if it's texture or taste, it's ARFID, or if it's the calorie content, it's AN.
Q: What environmental and treatment adaptions do you think can help those with autism receiving eating disorder support?
A: I believe that adapting treatment is necessary for those on the autistic spectrum in eating disorder treatment. Luckily, I’ve had an amazing dietitian who has understood my autism and ARFID and adapted my meal plan in the hospital to fit my needs.
Another way autistic people with mental health problems can be helped is by having a Care Treatment Review (CTR). This is a large meeting where professionals get together to discuss your treatment, and what will help you and your autistic traits during and after admission.
It's important for staff to have up-to-date and comprehensive training, and to understand how individuals will be affected in diverse ways.
Hospital environments aren't always the most sensory-friendly environments for those with autism e.g., bright lights, alarms, screaming, and other issues, so it's important to consider them with a patient.
Finally, communicating and expressing emotion can be challenging, which may sometimes come out in what some may think are extreme emotions, or individuals shutting down. Individuals may find it very difficult to communicate or make eye contact with staff, so having an awareness of this and being patient is really important.
I believe that treatment needs to be adapted for those with autism in a collaborative way by working with the person with autism to assess and understand their requirements. My top tip for working with people with autism and an eating disorder is to look at the individual, not their disorders, and to try to be as adaptable as possible when treating them.
Q: What do you wish people understood about eating disorders and autism?
A: I wish people understood the massive link between autism and eating disorders, especially the element of control. In my journey, I seek a lot of control and this is a large portion of why my eating disorders developed. It is thought that 20% of people with anorexia are autistic which is a scary statistic, so interventions need to be put in place to acknowledge this.
Q: What would be your top tip for someone supporting a loved one in eating disorder recovery with autism?
A: I would recommend that people that are supporting those with autism and an eating disorder educate themselves on the complexities of these disorders. Many people have comorbid disorders, so understanding how they interact and that not all ED symptoms need to be recovered from as they may be part of someones autism. It's common behaviours are mixed up, like food preferences may be an autistic trait, but the rigid eating patterns may be anorexia. It's really complex, but that's why it's so important we take the time to understand it.
My life with many different mental illnesses, being trans and having multiple eating disorders is a complicated one and I truly believe that recovery will be possible for me and can be for you too.