This article is a little harder to write than my previous articles because I am sharing personal accounts of my experience to try and help others understand possible triggers and reasons as to why some autistic young people develop eating disorders. I am not a professional, nor a researcher but I can share my experience and reflections in the hope that in some way it may help others.
We must always bear in mind that no two people are alike and everyone’s experiences are different; the extent to which a behaviour is carried out differs, but there will likely be similarities.
Throughout my life I have battled with Anorexia and bulimia, however thankfully for the last 13 years I have not again travelled down those paths of extreme relationships with food with my weight varying from 4 stone to 16, so what changed?
We know that theoretically 70% of those on the autistic spectrum struggle with sensory processing issues.
These can link into eating difficulties due to textures, smell, touch, colour & temperature of foods which may trigger a person to avoid all together or crave foods. Another difficulty is the inability to differentiate between anxiety and hunger as the physical changes that take place within the body are very similar. A child struggling to recognise and regulate their emotions and understand those of others may think they are hungry and eat continuously or say I am hungry when they only ate moments before; in reality they are potentially anxious.
Another factor is food sensitivities which can mean that certain foods trigger extreme emotional responses such as hyperactivity, anger, and even physical pain such as IBS or pains in joints.
One reason I mention food sensitivities is that consciously, we may not be able to the recognise a Non Gi-Mediated behavioural response triggered by food. These can often result in extreme behaviours which then elicit a negative punitive consequence which further triggers shame and guilt and can lead into a circular relationship with foods in a way to bring comfort or avoid overwhelming feelings without the understanding that the food we crave is the trigger.
Equally many try to encourage children to eat foods they cannot manage for a variety of reasons, I understand the fear, anxiety and desperation that comes for parents when children do this because of the love they have; wanting your children to thrive when self-restrictive diets trigger fear and anxiety in the parent. Another factor for parents is not only having to manage those emotions around supporting their child but managing the judgments and external pressures levied at them from society and professional sectors because our children will not eat particular food groups and/or respond negatively to others.
It is possible that there are other underlying factors that may not have been identified such as hyper-mobility of the mouth, under sensitivity or over sensitivity to smells, touch or even temperature, eating frozen foods may be one way a child can tell where the food actually is within the mouth and provide sensory feedback.
However, some interventions used to achieve the goal of eating certain foods can lead to further trauma, which would potentially increase anxiety through fears of what may or may not happen as a consequence if they do not comply. In reality the avoidance could be for a variety of reasons and until understood and supported, it will make eating a stressful event. Having structured meal times can also make it harder to recognise the signals of hunger and thirst as we may not get an opportunity to experience them and reduces our ability to recognise them; or they are dismissed because the timing is not as desired.
A factor not spoken about often is phobic responses that can be triggered, for instance a child eats some foods wakes up in the night vomiting, they get such a fright because they can’t control what’s happening, they can’t make it stop, its smells, makes a mess, it was unexpected; the result is a phobic response to eating in an effort to avoid all those overwhelming feelings and sensations. There is no conscious thought or planning, just a desperate need to avoid. Without understanding all the factors involved how van a young person be supported through this.
There are also difficulties with normal eating and thirst reflexes; even as an adult I temporarily forget to eat and drink and it’s more likely to happen when I am stressed, anxious or preoccupied with thoughts or a pursuit I am enjoying. It’s as though my body doesn’t send me the signals that I can recognise to say eat or drink. I often wonder if this comes down to regulated meal times such as at school and indeed in hospitals.
One issue that arose for me was the routine of meals and what was available. It was easier in hospital to avoid eating because meal times were very at set times. Food and drinks were only available to consume at those specified times meaning I knew that I only had to get past those moments and then foods and drink were not available. This made it easier to avoid and the longer it continued the easier it became, partly because of my tenacious nature I was able to stick to my resolve and not eat.
I often look back and consider as a child the educational provisions I attended; they were noisy, smelly, crowded, and exhausting where bullying seemed to be a daily occurrence. The places of solace were the library where food could not be eaten, or the art room where I could draw and be away from all that was overwhelming. It meant not having to go into the dining room and have to sit on my own and feel isolated in a crowd; I couldn’t understand why I had no friends, why was I different, all I could see were my flaws that were readily highlighted to me by external sources.
I have also realised as an adult that the effort taken to mask was such that buying a packet of polo’s to eat didn’t require the same expenditure of energy in comparison to having to make choices between sandwiches, main meals, puddings etc. The sugar gave energy quickly because I was already at saturation point.
In reality, it may be difficult for staff to comprehend how difficult it is for children to keep it together when all eight of their senses are out of equilibrium which meaning they are potentially in a continual fluctuating state of flight and fight.
Bearing in mind the NHS do not commission sensory processing assessments, that 70% of children with spectrum conditions are thought to experience sensory processing deficits, this indicates an increased probability of children within these settings having unidentified conditions which contribute to emotional dysregulation. Many children are not supported with sensory diets or equipment as these services are not commissioned nor implemented in educational provisions.
As I grew older the emotional dysregulation was overwhelming, my core beliefs in regards to my lack of worth which were slowly instilled over the years meaning each day was too much effort.
The depression and anxiety led to an even more unhealthy relationship with food, the hyper focus became helpful because becoming preoccupied with diets and losing weight helped distract from the very painful issues that I was not yet ready or able to face whilst others became preoccupied in trying to maintain my body’s state of health.
The core issues were not attended to, in reality I had been misdiagnosed as many girls and women are and therefore my needs were not identified and therapeutic interventions being used were not helpful because they did not take into account the triad of impairments we experience, and therefore were ineffective.
At the age of 22 I won the right not to be resuscitated in Scotland, my life at that point had become so intolerable and my weight so low that my heart could stop at any time.
Many would be scared but at this point the wanting to be free from the emotional pain, this and my fear of hurting anyone was all I could focus on; I had no concept or understanding of how others felt, I had nothing to work with cognitively so I couldn’t process it when people spoke of the effect my behaviour had on them, it was empty with no relevance or meaning to me and my own anxiety, depression, guilt and shame overshadowed everything else.
It wasn’t that I didn’t care about those around me, I cared too much; my core belief system was that the world would not miss me if I were no longer here. I shut down.
In hospitals where everything is controlled and monitored and access to things could be severely restricted, one of the only tools available was not to eat and drink.
Often the response to not eat and drink was triggered by an extremely overpowering emotional response to a trigger within the environment, feeling powerless, being out of control, fear and anger the two most powerful emotions.
During adolescence changes began within my body and others reactions to those changes as well as my own meant I started restricting foods. I wanted to fly under the radar, to avoid the physical, emotional, sensory and social issues, I started to avoid these by controlling food intake.
The hormonal fluxes meant certain times of the month were overwhelming; the sensory issues associated with that time minimised when periods stopped, the discomfort felt within my body, its shape, the smells, the attention it brought from others I wanted to avoid because it was too overwhelming. It was not until the suggestion that I keep a dairy I could logically see and tell myself that this will only last a few days, in a few days these emotions will not feel so overwhelming.
It took many years to realise that no matter what shape or weight I was, my beliefs about myself would not change unless I faced them, but I had to be ready, being forced or pushed to address them just meant I hyper focused more on foods and diets to avoid addressing the difficulties I was experiencing; the issue was, the perspective from which professionals worked was responsible, they like myself did not understand other factors were at play, impairments linked to being autistic. I genuinely didn’t understand.
As I reflect, I realise that I never ever actually wanted to die; the behaviours associated with anorexia and bulimia did not elicit any happiness in fact they further compounded my views and the views of others, their judgements and opinions of the motivations behind what I was doing simply made it worse.
There were also aspects of control, the more others tried to enforce regimes around eating or not bingeing the harder my heels dug in. Many would see this as me being willful, attention seeking, manipulation and often cited as such which negatively impacts the person involved and shows the lack of understanding around such issues; in reality, the anxiety felt at losing the only tool I had in my kit box was being removed and punitive punishments just reinforced my negative self-worth and increased my anxiety.
This meant I stopped drinking or eating or I swung into bulimic states because when you start to eat you crave foods and want to eat and eat, but then the fear, guilt and shame take over with the end result again being either not eating or the binge and purging; none of this was enjoyable, these were exhausting.
It was impossible to explain this when others warned me I could die; I never actually believed it was a possibility, although I knew what death was I don’t believe I fully grasped what it meant, the finality of it and yet dying had been one of my biggest fears growing up. I didn’t know or understand the future effects on my body because I was working with the here and now, the words were empty and meaningless to me.
I wasn’t able to process what was being said and to be honest the less I weighed the harder it became to process; my executive functioning skills reduced dramatically, my obsession with food increased because my body was trying to alert me that it was desperate for nourishment. Colours become brighter, emotional dysregulation increased, sounds become sharper, the ability to regulate temperature deteriorated, depression and anxiety increased becoming even more overwhelming; sleep became more elusive and dreams more chaotic which meant I was exhausted.
The people, we care about try and support us, to encourage us to eat and drink but we are deaf to those pleas; to others we appear nonchalant but we are masking and hiding behind food so you don’t see our true feelings, feelings potentially that we don’t even understand at that time.
All I wanted was peace from the pain; the pain of not fitting in, the pain of society reinforcing their view of my worth… or lack of; their judgement and interpretation of my behaviours though they did not look deeply to establish what they were about or what purpose they served. They did not ask, it was so much easier to blame me than seek answers elsewhere, to use coercion, guilt and shame to elicit the response they desired.
The sensory overload from nasal feeding tubes was awful, the loss of control; the fast physical changes where overwhelming. The same with gastric feeding tubes, which often lead to desperate attempts to remove them; to others we look defiant but it’s so more than that.
One of the hardest parts of my journey was the subconscious self-sabotaging behaviour that took place every time community living was a potential. Many would not understand the fear and anxiety of going back out to an environment where you felt out of place, where you didn’t fit in; the painful knowledge that you are different but not knowing why, what’s wrong with me being the most common thought.
Constantly feeling overwhelmed but not understanding why, feeling lonely, isolated, ostracised, judged and being failed in regards to support because it just wasn’t and still isn’t provided.
The avoidance of foods would start again because in reality, despite the power dynamics and abuse of power, institutions provide routine, someone to talk to as there are other service users like yourself so a sense of community, we knew what times sessions were, we had opportunities such as studying, volunteering, a sense of worth, companionship, the wards would be familiar, staff were familiar and predictable; it was far from the cold harsh reality faced every day within the community.
The need to belong somewhere, anywhere, can for some be a contributing factor to the ongoing issues around foods though we and others may not recognise this at the time.
For me it changed in part with Mindfulness and emotion regulation, behavioural chain analysis and eating awareness. I was taught to recognise physical responses to emotions, I could then name them and was better able to communicate these. I learnt to recognise triggers such as repetitive intrusive thoughts, I learnt different ways of responding to those triggers and learnt new skills to help cope, although personal relationships were a disaster and to this day I still struggle with this aspect.
I used volunteering build up my self-worth and self-esteem, this gave me a sense of purpose, built relationships outside of a hospital and taught me over time that I was not responsible for the behaviours or responses of others.
The biggest turning point however was receiving my correct diagnosis of Asperger’s at the age of 39; I finally understood why I had struggled so much in school, with relationships and in the community and why my relationship with food had led to extremes.
I have learnt over time that life is worth living despite all the stress that can come with it. Sadly, though it doesn’t mean that isolation, bullying, ostracism does not continue and in some respects as a parent it has now increased, however I no longer go to extremes with foods in an effort to cope, I have knowledge and understanding and certainly no desire to go back there as on reflection, that period of time was horrific and the damage to my body irreversible. It has stolen time, opportunities and achieved very little other than I survived in part because of those behaviours whereas many unfortunately do not.
Looking back, I appreciate things may have turned out differently if my needs had been correctly identified, supported and understood with appropriate interventions used to support and enable me rather than coerce me then possibly my unhealthy relationship with food would not have continued for so long. If support had been identified and provided in the community, then maybe things would have been different.
What works to help one person may not help the next, support must always be person centred.
The importance of approach and empirical research to substantiate that therapies used are beneficial not harmful and adapted to the person’s specific needs cannot be underestimated.
The interventions I remember being tried such as ECT, CBT, DBT, isolation, punitive punishments; the stress and trauma of nasal gastric tubes, and abdominal gastric tubes when in reality the professionals as unaware as me as to root cause, they were working with information that redirected blame at the vulnerable and invalidated our experiences.
They could not and still rarely grasp the reality of our situations.
It is of paramount importance to understand that we are vulnerable; we do not purposefully, intentionally or even consciously start down this route. There are so many factors that play a part, trying to fly under the radar, trying to fit in and some we may be still unaware of, especially in children who have a fragile sense of self. Unless a child/young person’s needs are correctly identified and supported the potential for these difficulties around foods and eating will continue any potentially increase in intensity over time.
Living with eating disorders and autism is challenging, it is not attention seeking, manipulative, it is not meant personally it’s trying to survive or avoid what in the world is overwhelming us.
Compassion and understanding are so important as is correctly identifying needs and providing appropriate support. Parents need to be supported rather than blamed. We all need to work together, to listen carefully to what child, young person or adult are saying as this issue affects all age groups. At times maintaining the health of a person is all that can be done, once this is achieved let’s work together to support and understand the level of anxiety and fear, pain, sadness and anger being experienced, lets understand how being autistic impacts on this situation and how other co-morbid conditions also impact on us.
This may then provide us all with ways forward to manage and overcome in order to reduce the need to perpetuate less than healthy relationships with food.