By Heather L. E. McKay
Which came first, the chicken or the egg? The same can be said for people with both ARFID (or another eating disorder) and incontinence. Which came first, which was the cause and which the effect? Do they eat strangely because of stomach/internal issues, or do they have continence issues because of their diet? Or, perhaps they are conjoined, linked or even interchangeable?
People with eating disorders often have co-occurring digestive or bowel/bladder issues. But equally; people with incontinence issues often have strange eating habits or need to adapt their diet to accommodate their incontinence.
It’s well known that people with Coeliac disease need to cut things out of their diets to keep their condition under control. Many autistic and ADHD’ers can have co-occurring disabilities like IBS, reflux (or GERD), Coeliac, allergies, intolerances, diverticulitis, diabetes, Crohn’s, intestinal ischemia, Polyps, inflammatory bowel disease, colitis, UTI’s (urinary tract infections), urinary retention, kidney stones, gallstones, Hirschsprung’s disease, achalasia, apraxia, motor disinhibition, dyspraxia, dysphagia, epilepsy, Pica, gastroparesis, muscular dystrophy, Prader-Willi Syndrome, inflammatory myopathies, and many more – and all of them will/can affect eating, movement, digestion, appetite, functioning capacity, toileting, continence and bladder, bowel and stomach issues.
When someone has ARFID and continence issues, it may be one of the above that is actually the underlying cause for both, or specifically for one – which then causes the other. Eg: if you have Crohn’s or Coeliac – you will not feel well at all, your bowel and bladder movements begin to change, and you then may seek out medical help to assist with finding foods that may be causing the massive discomfort. Or – you may first have internal pain, fatigue or other issues that you begin to help by restricting your food intake – and then more symptoms arise that affect the bowel and bladder. You may have symptoms in any order, as every person experiences internal issues differently – especially autistic or ADHD’ers that have co-occurring interoception problems.
The order of the symptoms may not lead you to the correct diagnosis at first. It’s important to understand the real cause before treatment, because you can make these kinds of conditions worse by adopting the wrong treatment, or by assuming what the issue, or cause and effect are.
Cause and effect are paramount when you have multiple diagnoses or disabilities. If you assume that your incontinence is due to your diet and you change your diet, but your real cause is something like diverticulitis (where you have pockets in the colon that need to be surgically removed), you may relieve some symptoms through diet change, but the longer those pockets exist, the bigger they get and the worse the problem can become, and more of the colon may need to be removed. The more missing colon, the more likely a colostomy bag may be necessary.
When seeking medical support and advise, always make sure that your GP, paediatrician, or specialist gastroenterologist knows every co-occurring issue. If they know about your bowel or urinary issues, but not your GERD, they will not be able to holistically help, if they know about your dysphagia, but not about how your inability to get enough foods down is affecting your toileting – again – they can’t help you. If they know about your inability to poop, but not about your Pica – it could be life threatening.
Some doctors have been known to cut off ND people, because of the triple empathy problem. Checkout Damien Milton’s “Double Empathy” problem and then add the medical empathy problem – where medical people have their own language and biases which causes a tripling affect when treating ND people. This triple empathy problem has been researched and proven to have devastating effects on the mortality rates of autistic and otherwise ND people. Where doctors don’t believe us because we show pain differently to other people, and we usually always have more than one co-occurring disability, which often results in doctors thinking we are hypochondriacs and refuse to listen.
If you have a doctor like this – try and make them listen to ALL of your issues, or if you are privileged enough – try and find another doctor or get a second opinion. Maybe even try to explain the triple empathy issue to them, and perhaps explain ableism in the medical professions as well – to help them to see their own bias and confusion/ misunderstandings towards you.
Of course, many many people can have incontinence and ARFID without the addition of complex medical issues like the above-mentioned list. These people usually still have co-occurring disabilities that are causing both conditions – like SPD, which I discussed last week.
Eating disorders and incontinence can be terrible things, but when you have many co-occurring disabilities, the struggle can become astronomical, but if you break it down and actually find the root cause of both issues, it can become manageable and understandable.
My experience of ARFID for myself and my family: When I first discovered that my children, myself, my sister and even my parents had ARFID I wasn’t surprised, I wasn’t sad, I wasn’t really anything – I just was. Because ARFID for autistic or ADHD’ers is usually genetic. We usually have ARFID from birth due to our co-occurring SPD or sensitivities. So, it wasn’t a shock or anything to figure out that we all have ARFID. It was an ‘ahah!’ moment, where we all agreed we had it, but before we had this ahah moment, there was a bit of fighting and misunderstandings, but also a lot of blame and finger pointing going on. Once we understood about ARFID– everything fell into place, and that’s where the healing and acceptance began.
We knew from birth that we were all ‘picky’ eaters and that we struggled with having or sustaining a varied diet, we struggled with flavours and textures, and we all only ate our preferred foods. But we didn’t understand that this is what ‘typical’ society called an eating disorder.
Every meal involved cooking four or more variations or sticking to the 3 meals that we knew all family members could eat. That was my whole life, and I didn’t think it was weird or considered wrong by society, until doctors and nurses, therapists and outsiders pathologized my kids and said; “that’s weird, they don’t eat ‘normally’”. But it was ‘normal’ for my entire family – what is abnormal for us, is eating all types of foods and not having severe preferences or hatred for certain foods. What was ‘atypical’ for us - was not vomiting when you were forced to eat something you abhor. What was typical for us was liking what you like and eating what you want when you wanted it.
When my kids were babies. My family said to me: “They should be eating a variety of foods and more vegetables, fruits and dairy”. But none of them had ever eaten any of those things and they couldn’t explain to me why they had expectations for my children, but not for themselves.
They blamed me for my kids’ diet and their ‘picky’ eating preferences – but I’d never restricted or influenced their food intake in any way – I always offered a variety (even the things I would never eat), and I let them decide and offered opportunities to explore, like all kids do when they are learning. But it was my kids who very quickly and very succinctly decided that they couldn’t eat certain things. It wasn’t “wouldn’t eat” – it was “couldn’t”. They felt sick when smelling, touching or looking at certain foods or drinks, so it was a definite ‘can’t’.
My family weren’t understanding that my kids were showing the exact same traits that we all showed and continue to show throughout our lives to this very day. They were looking at them from a NT lens – from a pathologizing and harmful lens that says, “if you eat that way – it’s wrong and harms the child”.
We eventually realised all of this pathologizing was not helping any of us, and that we must be missing something. Because all of us had grown to be adults and had ‘strange’ diets and habits. We realised it was a societal expectation, a weird and often absurd need to control children’s eating just because that’s what parents do – they judge each other for their parenting skills and styles without ever looking inward and thinking – I hated this as a child, it made my life a living hell – so why would I do that to any child (let alone my own), and why would I listen to other people who don’t know me or my family.
When I pointed out to my family that they all have ARFID and how hypocritical they were being – they stopped the bullshittery, they stopped the nagging and the put-downs, they also stopped blaming and started helping. They realised that NT standards and expectations just don’t work for us and never had – so why should we repeat the trauma for the next generation? We shouldn’t! And it was a great eye opener and really helped my kids to lessen their anxiety, to support each other and to feel supported by all around them.
My Nanna also had ARFID, although we didn’t realise it till after she died. She had eaten in her own way for her entire life. She never ate any vegetables or fruit until her 30’s, and she lived a happy healthy life until she died at 99 years. She fought her mother her whole life and refused to eat anything that was considered “healthy”. Her mother eventually gave up trying, stopped forcing and let her be. My Nanna went to visit friends in Sydney for a few weeks, as an adult, after getting married and having a child. These friends didn’t force her, but they ate in front of her. They modelled and ate their meals, but (according to my Nanna) they made her feel safe enough to try a few things that they obviously enjoyed.
She still hated most fruits and vegetables, but she did manage to add bananas and a couple of vegetables (corn, beans and carrots) to her diet, but no more than that, and she continued to occasionally eat those for the next 60 years. She helped herself, when she was ready, and she didn’t have many adverse health effects from her need to restrict her diet. Her diet did affect her child though – and that’s where it’s imperative that a person gets help. When a person’s diet adversely affects themselves or others it can be catastrophic. I won’t go into how her diet affected her child – as that is not my story to tell, but I will say it was because of what she refused to eat and drink during pregnancy. It was her ARFID that caused problems for someone else, and that’s heart breaking and not right or fair.
Occasionally, if we feel extremely safe and trust the people around us, we’ll try something new or slightly different from our safe foods. But we have to feel secure in ourselves and those around us for that to happen, as well as have capacity to be able. My whole family grew up in households where we all ate in this ‘strange’ way – once we were given permission to eat in a way that supported our own needs – that opened up both our capacity and ability to try new things and to increase our safe foods. If any of us were forced, berated, told to “eat it or starve” (we chose to starve), or were cajoled, pressured or rewarded or punished for our eating habits – we’d shut down, drop safe foods and sometimes stop eating altogether. These things cause us to feel unsafe and we lose not just our appetite but we lose our functioning capacity as well.
The way we ate (ARFID) was never considered weird or problematic or a ‘disorder’ in our family unit – it was just the way we were and are. Nothing to fix, because that’s how we were born, and we learnt to adapt and accommodate ourselves and our own needs. But I can say it harmed all of us in different ways. The way my Nanna ate hurt her relationship with her child. The way another family member ate caused their own diverticulitis, and for another – constipation, for another withholding and incontinence, and for others – urinary disorders, GERD and other medical issues – for us our eating seems to have caused more complex issues, not the other way round. But we don’t know for sure, we are guessing for some of us, as some of us medical trauma from doctors doing terrible things, or not believing us, or misdiagnosing us.
We believe that what we ate and how much of each food we ate directly impacted on different health areas for each of us. Now that we understand those health issues and concerns, we are better able to help ourselves and support ourselves and our children. We look for ways to get the nutrients and things we need that are missing from those restricted diets. We take supplements, we have regular doctor checkups, and we try to take better care of ourselves.
We still have ARFID and struggle daily with finding foods that meet both our SPD and health needs, as well as support our executive dysfunctioning, burnout and our other issues. It’s hard, sometimes it’s easier, but mostly I still struggle. When my capacity is low, I struggle more. To help both ARFID and continence issues – I have to increase my capacity on a daily basis. I’m very careful to follow the “Spoon Theory” for myself and my family members – so that we all have that energy and capacity to be able to eat and live more healthy lives. Sometimes I fail, sometimes I have a win – but I tell myself to keep going and keep trying, those small wins are my and my families’ intrinsic rewards that mean so much to overall health and living.
To keep capacity high, we keep everything else in our lives low demand, low key and have supports in place for everything we do and everywhere we go. We support ourselves in ways that suits each individual, and we incorporate those things into everyday living.
If you want some ideas as to tools that may help – my book 4: Autism The Big Book Set of Help has a huge array of tools and ways to set up sensory households and support ND loved ones. My book 2: Co-occurring Disabilities has more information about both ARFID and incontinence and ways to support both and where to get more information and help.