We take a closer look at eating disorders and how they can affect autistic people differently
I must admit, my interest in the topic of eating disorders is slightly selfish. I had anorexia in my teens and, since recovery, I’ve been on a mission to learn more, understand what happened, and support the fight in reducing their impact.
The more I learn, the more I realise how nuanced they are, and how they affect everyone differently. Recently, I’ve been hearing more from the autistic community, and how eating disorders affect them. It’s an area lacking in research, and my hope is that by exploring it here, I can do my part in shedding light and awareness.
Firstly, let’s look at some of the commonalities between eating disorders and autism. Umairah Malik, Clinical Advice Coordinator at Beat (the UK’s eating disorder charity) tells us there are certain traits that can overlap between autism and an eating disorder, such as rigid thinking styles, decreased social circles, or emotional dysregulation.
“This means it can sometimes be difficult to differentiate between what is part of being autistic, and what is the eating disorder,” Umairah explains.
The main difference, Umairah says, is that eating disorders are mental illnesses that can be recovered from. While the National Autistic Society (NAS) describes autism as a “lifelong developmental disability which affects how people communicate and interact
with the world”.
Which eating disorders most commonly affect autistic people?
While autistic people can experience any type of eating disorder, most of the research centres around anorexia and avoidant restrictive food intake disorder (ARFID). According to the NAS, research suggests between 4% and 23% of those with an eating disorder are also autistic.
In terms of what’s most common, Umairah notes that there’s research that proposes it’s anorexia, while some clinicians suggest it may be ARFID – but more investigation is needed.
Something that may be holding us back from knowing the number affected is that many people (women especially) are undiagnosed as autistic. Being diagnosed with an eating disorder can help some uncover autistic traits, while being diagnosed as autistic paves the way to understanding an eating disorder for others.
“I always thought I was just a ‘picky eater’ growing up,” Happiful writer Bonnie Evie Gifford tells us. “For as long as I can remember, I’ve struggled with food textures, sounds, and anxiety around new foods or food-based situations. It wasn’t until I was diagnosed officially as on the spectrum in my 20s that I first came across ARFID.”
Bonnie explains that this discovery helped her realise she wasn’t alone, and could start looking for support.
Are the causes of eating disorders different for autistic people?
“For autistic people, the reason they develop an eating disorder may be different to those who aren’t autistic, such as sensory differences, a need for control or familiarity, or being misunderstood by non-autistic people,” Umairah says.
Autistic people can often have sensory sensitivities around what they see, hear, smell, touch or taste, and this, in turn, can affect how they eat.
“Even the slightest unexpected squeak of onion or crunch of a firmer-than-expected veggie, and I can’t continue eating something, even if it’s on my ‘safe’ foods list,” Bonnie says. “It’s made eating challenging, as my ‘safe’ foods consist of only around a dozen vegetables, and no fruits at all unless completely smooth as part of a juice or smoothie.”
The desire for routine is also something Bonnie relates to.
“I like to have set routines, and once a plan or routine is fixed in my mind, any changes or disruptions around this can be extremely challenging – including unexpected changes to meals, what type of food I had planned to eat, or what is available.”
Being misunderstood can be another source of anxiety, often leading to a sense of social isolation. Some autistic people may even feel that focusing on weight helps them fit in after being exposed to societal messaging.
Interception difficulties can also play a role, as some neurodiverse people struggle to recognise when they are hungry, thirsty, or full. Alongside this, alexithymia (a difficulty in identifying and describing emotions) can lead to some using eating disorder behaviours as a way of coping.
Perhaps the most striking difference is that autistic people with eating disorders are often less concerned about weight or body shape. Their behaviours don’t tend to be driven by a desire to ‘lose weight’, but instead by other causes mentioned here.
Why can treatment be difficult for autistic people?
Unfortunately, it’s been noted that autistic people with eating disorders tend to have worse outcomes than non-autistic people, as reported in a study in the journal Molecular Autism. There are many reasons why this could be, but a likely factor is that treatment isn’t catered to autistic people.
“There currently aren’t any clinical guidelines or official treatment adaptations to support autistic people with eating disorders, and more research in a diverse range of people is needed,” Umairah explains.
As noted, those on the spectrum are likely dealing with different causes than neurotypical people. If these aren’t considered during treatment, recovery can be an even more difficult process.
Hospitals and in-patient units can be tough environments for autistic patients, with bright lights, noise, and group therapy sessions all triggering anxiety. Some of the therapeutic approaches, like cognitive behavioural therapy (CBT), include metaphors and open-ended questions, which can be challenging to those on the spectrum. The dietary plans may also not take sensory issues into account, with practitioners expecting more than is reasonable.
All of this can lead to autistic patients feeling more misunderstood, and drive them deeper into eating disorder behaviours.
What can help?
One of the most important actions that can help is individualising eating disorder treatment, and making adaptations. This may include offering more consistency with appointments, giving clients more time to process information, doing sensory checks of environments, and not expecting such varied food reintroduction.
“One of the most well-known pieces done in this area is the PEACE (Pathway for Eating disorders and Autism developed from Clinical Experience) Pathway, which produced an autism-specific clinical pathway that aims to improve treatment outcomes for autistic people with eating disorders,” Umairah says. “It has resources for autistic people with eating disorders, carers, and clinicians on its website.”
For autistic people, it can be helpful to identify what behaviours are linked to your autism, and what may be driven by the eating disorder. In a video on YouTube, called Autism & Anorexia | 5 Things you need to know about the interplay, Dr Pooky Knightsmith explains that you want to befriend your autism, and work together to push the eating disorder away. This may mean taking advantage of routines in a positive way, making it a habit to eat regularly throughout recovery, for example.
Bonnie explains that talking to professionals and the autistic community helped, along with more experimental cooking for her partner and son.
“I’ve slowly begun expanding the foods I feel comfortable eating. Through being exposed to more of these different textures and smells, these foods are no longer causing me the same levels of anxiety and discomfort as before.”
If you’re struggling…
Umairah stresses that speaking to your GP to ask for a referral to an eating disorder service is a great first step, or you can see if your local service accepts self-referrals.
“You can also ask for reasonable adjustments, which the NHS has a duty to provide,” Umairah adds. “This might be asking for information on what to expect and what the environment is like, asking for a longer appointment, asking for a summary of appointments, or requesting short breaks during appointments if needed. Carers can also request support and information, and might find it useful to discuss treatment adaptations with the team as appropriate.”
You can also reach out to Beat 365 days a year on its helpline (0808 801 0677) or via its website. It also offers various services to those with eating disorders and carers. “One group that people might find helpful is Endeavour, our carer support group for parents or carers of young people aged 5–15 with ARFID,” Umairah shares.
Hopefully, with more awareness comes more understanding, as we come together to fight a common enemy.