Eating difficulties are commonly reported in children and young people with autism. In a society saturated with the ever-evolving landscape of diet culture and often conflicting professional advice, these difficulties are an understandable source of worry for parents.
We, as practicing clinicians, have observed an increasing trend in young people with autism visiting eating disorder services with either dietary restrictions or a significant change in eating patterns impacting their physical health.
It is also important to be mindful that girls are frequently underdiagnosed in terms of autism and it is sometimes an eating disorder that first brings them to our clinical attention. Meanwhile, much less is known and researched with regard to young men with autism and eating disorders as fewer utilize eating disorder services. As our knowledge increases about how autism presents itself in individuals, we are becoming aware that young men who may have previously been under an eating disorder team may actually have been missed in terms of an autism diagnosis. This is because we are becoming more aware of young males masking/camouflaging, albeit differently than young women do (Hull et al. 2017), meaning their presentation can be less stereotypical than what we would have previously seen.
Research has also shown some young people with anorexia nervosa meet the diagnostic criteria for autism (Westwood, Mandy and Tchanturia 2017), often with the underlying autistic traits preceding the onset of the disorder (Mette Bentz et al. 2017; Schulte-Ruther et al. 2012).
What to look out for:
- Any changes in eating patterns: Whether your child has previously had a limited diet or not, if you notice any changes in eating patterns or types of food consumed, we encourage you to open up dialogue with your child on what has instigated this change. We can often fall into the trap of viewing such changes as typical because it is ‘what all teenagers do,’ but this is the trap of diet culture and we need to remain curious to such changes. Such dialogue can create a window of opportunity for understanding what is going on with your child
- Physical and emotional signs: Significant food restriction or bingeing and purging (vomiting) can lead to symptoms such as fatigue; hair, skin, and nail changes; cold peripheries; lack of concentration; cramping; and loss of menstruation. Other symptoms include change in personality, loss of joy in previously enjoyed activities, and persistent thoughts about food and meal planning
- Be mindful and prepare for the effect of transitions: More often than not we see young people with autism come to us soon after a transition—perhaps from one school year to another, or into their final school years. This is due to them having to negotiate and manage more complex social interactions, communications, and physical environments like high schools. There is also a shift in expectations of them from both teachers and adults in their lives as well as from their peers in regards to relationships. In addition, it can also be because ‘diet talk’ is a common language amongst teenagers and there is pressure to ‘fit in’ with their peers
- Be aware of longstanding obsessional qualities: and whether they are influencing a change in the nature, frequency, and intensity of the behavior or thinking around food, eating, and drinking. Also, consider what the function of the change in obsessional thinking and behavior may be. For example, is it anxiety, a need to control, manage, and regulate a range of emotions, or an environment or situation? Be aware the change around food may also be a special interest. If you can identify where the shift has come from, you have more of a chance enabling management, understanding that shift, and getting the right support in the right way
- Changes in relationships: What we see and know is that relationships are complex and are forever changing and evolving. If a young person already struggles with reading social interactions and situations and also has challenges expressing how these difficulties impact him/her, then imagine how difficult he/she will find the following:
- how to make friends
- how to manage disagreements
- how to fix things after a disagreement
- how to sustain the ever-changing beat that is a relationship and the impact that will have on him/her emotionally
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Therefore, if the default position is to focus on obsessions in order to manage these relationship challenges, there may be an observed change in behavior or thinking around food and/or exercise.
- Underlying anxiety: When we are anxious, we tend to go back to what we feel comfortable with, what we can control, and what makes sense to us and makes us feel safe. Similar to what we shared about relationships changes, if we have identified that anxiety is present and we can see the changes, then we need to understand where the anxiety is coming from and work on that. In addition, it is essential we enable the young person to understand what anxiety is, what his/her anxiety looks like, and then subsequently how he/she can identify, understand, and manage his/her anxiety in a helpful way
How to help if your child has autism and an eating disorder:
- Be led by your child: Understandably, having an eating disorder enter your home can often lead to disruption, distress, and tension, not only for your child but for the whole family. Taking a more curious and compassionate position with your child’s difficulties can help you gain a better understanding of the function of his/her eating disorder. You may need to understand his/her sensory needs and adapt his/her environment as well as enable him/her to understand and manage his/her own sensory needs. You may also need to find alternative ways of communicating with him/her about his/her emotions in order for him/her to be able to express himself/herself to you. This may mean both parents and the young person require support in understanding the anxiety and each other’s different ways of thinking so family systems and parenting styles can be adapted. Indeed, it may be necessary for you to have your own support away from your child in order to understand what is happening with him/her before you can discuss and implement change
- Create a positive culture around food: Everywhere we turn we are told what we should eat and how much—this can lead to confusion and labelling foods as ‘good’ or ‘bad’. Not only is food a source of energy, it is also a central feature in many people’s social and cultural lives. It may be necessary to evaluate your own relationship with food and from there create a positive (or even neutral) narrative around it for your child
- Advocate for him/her: If your child is under the care of any services and struggles to communicate his/her needs, let the team know what adaptations can be made for him/her. Sensory needs, learning style, consistency with room layout, etc.—everyone has a different “normal.” Therefore, it is important that the team and the family work together to create a safe space for the child
- Understand how the features of autism can impact the journey of the eating disorder: Be mindful that your young person may have difficulties with theory of mind and executive functioning. For example, he/she may have difficulty understanding and accepting yours or others’ points of view and adapting his/her own thinking and behavior accordingly. He/She may also have difficulties with planning and organizing his/her emotions and actions alongside difficulties retaining information. The concept and action of change and uncertainty may be anxiety-provoking for him/her, meaning he/she may find demands by others difficult to implement and therefore becomes distressed and unable to act on those demands
Ultimately, you are the expert by experience (i.e. you know your child best); work collaboratively with your child’s clinicians (should he/she be under a service) so they can understand and work with you, your family, and your child. It is important you trust your yourself, but learn how to share your instincts, thoughts, and feelings in a way clinicians will understand
Hull, L., Petriedes, K.V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M-C., Mandy, W. (2017) ’”Putting on My Best Normal”: Social camouflaging in adults with autism spectrum conditions’. Journal of Autism and Development Disorders 47, 8, 2519-2525.
Mette Bentz, M.S., Moellegaard Jepsen, J.R., Pedersen, T., Bulik, C.M., Lennart Pedersen, M.S., Pagsberg, A.K., Plessen, K.J. (2017) ‘Impairment of social function in young females with recent-onset anorexia nervosa and recovered individuals.’ Journal of Adolescent Health 60, 1, 23–32.
Schulte-Ruther, M., Mainz, V., Fink, G.R., Herpertz-Dahlmann, B., Konrad, K. (2012) ‘Theory of mind and the brain in anorexia nervosa: relation to treatment outcome.’ Journal of the American Academy of Child and Adolescent Psychiatry 51, 8, 832–841.
The Times, (2007) Anorexia the female asperger’s 17 August, Accessed on 12/04/19 at https://www.thetimes.co.uk/article/is-anorexia-the-female-aspergers-80wp5r9ftw6
Westwood, H., Mandy, W., Tchanturia, K., (2017) ‘Clinical evaluation of autistic symptoms in women with anorexia nervosa.’ Molecular Autism 16, 8, 12.
This article was featured in Issue 113 – Transitioning to Adulthood