Experts have discussed the correlation between autism and eating disorders before. However, they’ve rarely suggested a treatment plan based on it until now, Fiona Fisher Bullivant and Sharleen Woods both work in CAMHS (Fiona as an Advanced Nurse Practitioner specialising in autism and Sharlene as a Dietician.) As a result of frequently working together, they have written a book about the intersections between autism and eating disorders in young adults. We sat down to interview them about this new publication.
What led to the work on the book?
Fiona: I had originally had a book out about working with girls and young women on the autism spectrum and through this initial book some themes came out, one being eating disorders.
Sharleen: I approached her about certain cases and she asked if it was possible autism was at play. Usually autism wasn’t picked up in my treatment for eating disorders. We noticed the evidence base for eating disorders wasn’t working with some people. Generally for young people with eating disorders the main evidence base is family based. So this would be the family refeeding and re-nourishing child. For those with autism treatment likes to be led by them and not necessarily the parents so the family method could cause a lot more stress and a lot more meltdowns.
I saw that a lot of the literature about eating disorders in autistic people says they’ll need more intensive care. Some of it also said that inflexibility and obsessive behaviour in an eating disorder is quite close to autistic traits. But none of them seemed to make the connection that this might be because the person being studied is autistic. How do we overcome that?
Sharleen: Generally we didn’t go into life before the eating disorder in great detail but we point out in the book that there needs to be more looking at development history. That thinking can’t always be just attributed to the eating disorder itself. Starvation itself however can cause inflexibility of thought, poor social communication skills and rigidity therefore this is why it can be difficult to assess whether autism is present at the point of assessment.
Fiona: Sharleen came to me with the same frustrations, feeling we weren’t doing things right with these young women. We’re trying to encourage people to think differently and more holistically. In the world of autism parenting has always been a sensitive area. Sometimes when we have young women and parents who are un diagnosed parenting is questioned and judged and parents often feel blamed because the usual parenting styles often don’t work so clinicians often don’t understand why behaviours are not changing and usual methods of parenting are not working.
Did you notice difference pre and post diagnosis with any of these people?
Sharleen: We mention Niamh in our book who bravely shared her journey. She entered the team when I first started. Autism wasn’t even on my radar at the time. I remember in her first session she told me she was vegan. In the world of eating disorders, the desire to become vegetarian or vegan is common because it’s a way to further restrict diet. But with Niamh I could tell it was different. She was adamant that it was about animal rights. This choice made her increase her repertoire of foods as opposed to further restriction. She was learning to use food far more creatively.
Fiona: The difference was why she wanted to be vegan. So we looked into her thinking and realized in this case it wasn’t about body image. It was more about obsessive thought and being entrenched in a belief. The actual function of the veganism was almost like a special interest.
Sharlenen: In those with autism that kind of obsessive thought can also play a more challenging part in an eating disorder, though. I had someone who was very interested in numbers and their weight needed to be going up and down in a pattern. There was also specific preferences for odd and even numbers going on there.
In Niamh’s case the sessions tended to be shorter and she struggled with emotion. She initially restored weight and got well on the physical side of things. She was discharged but was eventually re-referred to Fiona about separate issues.
Fiona: Niamh went on the describe how different it was for her being with clinicians who understood autism. Before I started working with her another clinician noticed the mental health approaches weren’t working and noticed differences in Niamh that she wasn’t sure of. This clinician did not have a clinical background in autism and neither had Sharleen at the time she saw Niamh. My thought was ‘how was this missed’ but this person didn’t have my background and neither did Sharleen. We shifted everything and did things differently with the family but mainly focused on Niamh. She is now doing phenomenally well. In the beginning of the book there’s a beautiful section where she focuses on ‘the anorexic her’ and how she wasn’t able to express herself when she was younger with Sharlene. She is proud of her diagnosis now and it gave a lot of perspective.
Do autistic people have different triggers for eating disorders?
Sharleen: In Niamh’s case the trigger was the transition from primary to secondary school. When I met her she was in home school because of the over-stimulation. Even with someone who isn’t autistic it’s partially about fitting it. For an autistic person it might not just be a physical appearance but it comes from a different place.
Fiona: It’s coming from a different place but it looks the same on the surface. When you get down to it it’s more about feeling different and ‘how do I fit in’ or ‘how do I understand myself.’ So the interventions are really different. Some people with autism feel different and sometimes have difficulties understanding and expressing their emotions so will often go to their default positions such as their special interests, obsessional thinking, and sensory sensitivities rather than describing what is happening to themselves on an emotional level.
Sharleen: Starvation can numb you. We see autistic people continuing to restrict even after re-nourishing. They’ll still be experiencing a lot of emotion and want to return to a time when they didn’t feel anything. Anxiety seems to be co-occurring quite a lot in eating disorders which naturally manifests itself in autistic people too,
Fiona: I’ve worked with and currently work with young people who have co morbidites of self harm and have suicidal ideation. Impulsivity is also a common theme that occurs. impulsivity makes people act in the moment of what they are feeling at that time and if that is a negative feeling to act impulsively on that can be catastrophic. So often people with autism don’t plan their reactions to feelings they just react in the moment. Eating disorders can sometimes start with an impulsive thought or act in response to emotional dis-regulation but can then become an obsessional pattern or rigid way of thinking.
How can we help remedy this specific issue in young autistic people.
Sharleen: One of Niamh’s triggers was the transition from primary to secondary school. When I met her she was being homeschooled because of the stimulus she was experiencing. Now as a team we always consider ‘could this be autism’ and what adaptations may need to be made. But it isn’t just in our practice. With one young person we’re currently working with she couldn’t get the diagnosis because the school wasn’t engaging.
From their point of view she was an A-grade student. When we brought her head teacher into a meeting he walked away shocked because he found out she was exhausted every day from masking and needed to sit at a particular desk or she’d become stressed. In a lot of cases it seems to be a problem of not understanding autism is a spectrum and it presents differently. If we aren’t well informed about autism and what’s happening; how can we know what we don’t know?
Fiona: I still need Sharleen’s knowledge about feeding and nutrition because it’s not my specialism. But I hope to advise her and her team on how to adapt this to the individual autistic person. We also try to include parents so as to ensure a holistic approach. However, sometimes due to the genetic component of autism parents who may be undiagnosed themselves and may also need support to understand themselves and their interactions and belief systems in order to support their child. Therefore systemic work is essential but it may need to look differently than the current systemic practices in eating disorder services.
I believe that understanding who you are as an individual is paramount and then you can move to understanding how you function and manage the other parts of you that impact on that functioning and self management. In this case we would be working on the other part as autism, and that it doesn’t define you as an individual but does impact on functioning and self management .
‘Autism and Eating Disorders In Teenagers: A Guide For Professionals and Parents’ will hit the shelves in late July!