Lived experience and professional perspective in eating disorder treatment of neurodiverse populations.

Zuzanna Gajowiec in conversation with William Dwyer-Joyce (DJ)

Treating and caring for individuals who struggle with both an eating disorder and neurodiversity presents unique and complex challenges. This title, which is an expression I learned from Dr. Karen Samuels (CEDS) fits so well. As professionals, we have good intentions and try our best, yet still, unintentionally can cause harm.  The Eating disorder field is one of the most challenging in mental health, because eating disorder recovery combines physical and psychological risks, and as a relatively new field offers limited research and resources to guide us. This is also a field of very passionate and dedicated clinicians, eager to learn.  Eager to do no harm.

Our hope is that this article will help professionals become more aware of the needs of our clients in treatment for an eating disorder with both diagnosed, and undiagnosed, neurodiversity. It is so important to include the “not yet diagnosed” population into the conversation because symptoms of eating disorders can be overshadowed by neurodiverse conditions and vice versa- leading to underdiagnoses or misdiagnosis. There are also many barriers to accessing assessment/diagnosis: money, long waiting lists, availability, shortage of trained providers, masking and professionals’ biases.

In this article, together with DJ (William Dwyer-Joyce ) we want to contribute to the wider discussion about how to care for neurodiverse populations in eating disorder recovery. Our conversation will focus on Binge Eating Disorder (BED) and ADHD. We will combine lived experience and professional understanding to spark a reflexion and raise important issues.

Zuzanna Gajowiec (ZG): I am a Clinical Psychologist and Family Therapist, first and only Certified Eating Disorder Specialist and Supervisor (CEDS-S) in Ireland with a profound dedication to supporting individuals and families on their journey towards healing and recovery. As the International Association of Eating Disorder Professionals (iaedp) Chapter Chair of Ireland, I am at the forefront of advancing awareness and understanding of eating disorders in my community. Welcome DJ, could you introduce yourself?  

DJ: My name is William Dwyer-Joyce (DJ) and I have a diagnosis of BED and live with ADHD. I’m a peer support worker at Lois Bridges Eating Disorder Centre in Dublin, Ireland. I use my lived experience of mental health struggles to support others on their recovery journey.

ZG: I am so happy we work together, in Lois Bridges, and I am grateful for the Peer Support work that you do. It is invaluable. I am also excited we both will present at the Nourishing Neurodiversity Conference in September (https://supportedfamilies.ie/international-chapter-event/) and that we will focus on discussing Binge Eating Disorder and Neurodiversity. There is a little more interest and understanding of Autism and eating disorders. I think there is also a little bit more effort in creating accessible services for people with Autism. And I believe much less space is dedicated to addressing Binge Eating Disorder. Can you tell us, from your experience, what specific issues and unjust or maybe even harmful interventions someone with ADHD encounters in eating disorder treatment?

DJ: Sure. I may start with procrastination. For as long as I can remember, I have always used food as a coping mechanism. Having ADHD procrastination is a huge issue for me. Most people don’t like taking out the bins or ‘finally’ going through old documents to know what to keep and what to throw out for example, so we avoid these tasks. This for the most part is totally normal. My experience of procrastination has led to dropping out of multiple courses, losing jobs and prolonging my journey to recovery by years. This has led to an awful lot of shame, self-distrust and self-hatred. It’s very hard after many years of trying and failing to believe that ‘this time it will be different’ – Whether that is professional, academic or recovery related. When I started my recovery journey I was often asked by therapists, dietitians, occupational therapists etc. to complete exercises like mood journaling, food diaries or mindfulness exercises. I almost never did them. Not just because they were emotionally taxing and confronting – I was being asked to engage with things I was trying to hide from after all – but also because these things reminded me of homework and all the time, I struggled in school from not completing assigned work. All the times I dropped out of a course were because I simply did not keep up with the workload. All the times I had sat blank faced in front of a book without the slightest notion of how to concentrate long enough to get to the end of a chapter. This of course was tied to my lack of ability to regulate my emotions. It was so much easier to avoid it all and put my head in the sand than it was to move through these challenging feelings and build confidence. This process took many years. I still very much struggle with procrastination but my ability to move through these feelings of shame and inadequacy with resilience has massively improved. People who are neurodivergent will often struggle with these kinds of tasks for a variety of reasons. They are not being ‘non-compliant’ or ‘treatment resistant’. Treatment can still work, they just need patience, understanding and potentially some extra support and accommodations.

ZG: Thank you for this, and I am very sorry that you had this experience of being labelled “non-compliant” in treatment. This is such a good example of a huge barrier neurodiverse clients are facing. So often in our field we have specific expectations, especially related to behavioural change that our clients just can’t fulfil. Thank you for sharing how it feels and that it sadly leads to worsening of the problem, not improvement. If someone comes to treatment with an eating disorder and leaves with an eating disorder and more shame, self-distrust and self-hatred, it is clearly a problem and an example of iatrogenic trauma.

Thank you also for highlighting how, after such experiences it is so much harder to start again, to trust “this time will be different” and not just on a cognitive level, but being traumatic enough that further services,  and the health care providers, evoke specific feelings and reactions that make it very hard to trust again.

I am glad you were resilient enough to try and try and try, but I can imagine that there are many people, who experienced shame so large and overwhelming that it stopped them from attending services and looking for help.

I am happy as a field we are finally talking about treatment that supports our clients, not expecting everyone to fit the same mould, but we still have so much to do, to improve. We have to do better. Are there any food specific problems, barriers are neurodiverse clients experiencing?

DJ: Balanced and structured eating is a central part of eating disorder recovery. Balanced eating is eating from all major food groups, a wide variety of food including fruits and vegetables but also foods that can bring feelings of shame like chocolate. Structured eating is eating 3 main meals a day as well snacks – Eating every 3 to 4 hours. Doing this requires a great deal of planning. You have to decide what to eat (ensuring it’s balanced), where to get it, how to get there, what is in your budget, get the food, bring it home, figure out how to store it, figure out how to make the food, eat it. This is challenging for most people; this is really challenging for those with an eating disorder. Every step of the process can create feelings of frustration and inadequacy. Often those in recovery are working with a dietitian (if you can afford one) who is supporting the person with this planning and that often involves trying new foods or foods the person may not have eaten in years. So even if the choice of food is taken away it’s still very hard. People who are neurodivergent often find planning challenging. Adding that to something that is also emotionally taxing can make recovery feel impossible. Recovery takes time and planning and is expensive. Recovery needs to happen with a great deal of support, and as you just mentioned, the right kind of support that does NOT add to the person’s shame and frustration.

ZG: Yes, you said so much here. Let’s start with the planning and how emotionally overwhelming it can be to remember everything and “do it right”.  I think it is essential that professionals understand the challenges you mentioned and support, not add stress by having impossible expectations. As you mentioned it is so important to work with a dietitian, and it can be hard to find dietitian who specializes in eating disorders, how hard it must be to find someone, who can work with someone whose brain is neurodiverse and works in a specific way? Also, the therapist must understand and anticipate specific challenges to “educate and warn” the individual and family, not to expect the recovery process to be easy to navigate. We know from science that many neurodiverse people are perfectionists and put a lot of pressure on themselves, so they need professionals helping then to lover that pressure, not add to it. As you mentioned before, giving an example of your school experience, people may also have unhelpful beliefs about themselves that they formed through not being understood and being shamed for their neurodiverse brains in the past. As professionals we have to address the beliefs in therapy, because they can become self-fulfilling prophecies. For example, my neurodiverse clients often believe recovery is possible in general, but not accessible to them, because they have those multiple experiences of “failing”. And I don’t wait for them to tell me this, when someone has been in multiple treatment centres, I begin with asking about those attitudes, beliefs and learned expectations.

DJ: Yes, it can be helpful to address the beliefs and discuss the past. I just want to say that recovery is possible for neurodiverse people. I so want everyone to know this.

ZG: I want to add by saying that I believe people have the right to be supported with exactly what they need support with, to take as much time they need and to expect being met with all the issues they bring, not just one at the time.

Sadly, sometimes as professionals we struggle and fail to recognise specific needs, or worse: contribute to further shame to individuals for having them.

We need much more and more specific training to understand neurodiverse clients. We need tools to accompany our clients in their recovery – however it looks for them, not expect them to follow a script. But most of all I think we need to constantly reflect on our actions to double check so we are not causing harm. I love to support people in advocating for their needs, but it also enrages me that they have to do it so often.  I firmly believe that knowing when we cause harm and not causing it is our responsibility, not our client’s job to teach us.

I know you have more examples for us:

DJ: Yes, living with ADHD has tended to make me quite sensitive to stimulus and generally be in a state of hyperarousal. Hyperarousal is a state of feeling overwhelmed by stress. The other end of the spectrum being numb from stress. My experience of hyper-arousal is racing thoughts, sensitivity to noise and light, upset stomach, shallow breathing and feeling emotions very intensely. This makes things like emotional regulation quite challenging. What we want is to be in the middle of that spectrum: in the window of tolerance – Where we are aware of our emotions but not tied to them or disconnected from them. It’s hard to be practical and pragmatic when you cannot see beyond your own immediate emotions. This, I think, has played a huge role in my bingeing behaviours. Feeling anxious and overwhelmed a lot of the time because of simply the sheer activity in my brain, bingeing helped quieten that noise. I can move from hyperarousal to hypoarousal.  There is safety in the dopamine hits of high carb/high sugar highly processed food. It is predictable. I know exactly what each bite is going to taste like and what the texture will be. Often, I don’t even really want to binge, I just want the urge to binge to be quiet. I know that the only time I will truly stop thinking about food is when my body is so painfully full that I cannot eat anymore. I have quiet in my mind.

ZG: And I can imagine it must be so frustrating when behaviours are not met with a deeper understanding or at least curiosity and viewed as bad behaviours that need to be addressed and ceased as quickly as possible. And what worries me even more is that so often people with Binge Eating Disorder are misdiagnosed and offered weight loss treatment and their adaptation via the use of Eating Disorder behaviours is further shamed and stigmatized. Using food to regulate nervous system makes perfect sense – it is accessible, and some foods do soothe, some stimulate. Sometimes food or starvation helps the person to manage PTSD (Post Traumatic Stress Disorder) symptoms, for example flashbacks, therefore it cannot be taken away without helping the person to regulate their nervous system.   without Offering trauma specific interventions is critical.   Again, without curiosity and discovery of the function of the behaviour,  and understanding how the nervous system works, we continue to contribute to the problem.   

DJ: Yes, and also not just food, also other substances. Neurodivergent people are more likely to face addiction than the general population. The relationship between even just ADHD and addiction is multifactorial and complex. Speaking from personal experience, I know my struggles with executive function (to do with things like planning and organising) have made it difficult for me not to make decisions impulsively. My hyperarousal has made me look for things in my environment to quieten my mind. I smoked my first joint at the age of 15 with friends in a field a few days before my junior cert. Suddenly things were funnier, music sounded better, and food tasted more delicious. In a few short years I was smoking several joints a day just to feel normal. I didn’t know it at the time, but I was self-medicating. Cannabis helped me relax but it also increased my appetite. My bingeing and smoking became so intertwined that I worried I’d never be able to stop either of them. I would binge without being high but I knew if I was high I had to binge. This made recovery even more challenging as I was dealing with having ADHD, an eating disorder and addiction. I was very lucky to access services because many drug rehab centres will not admit those with an eating disorder and many eating disorder centres will not admit someone in active addiction.

ZG: We do need treatment services that are designed to work with ED complexities, because human beings are complicated. I am glad you mentioned the constant revolving door situation many of my clients find themselves in – they are sent from one service to another because the services can only treat one issue and do not accept people with other issues. I am glad you were able to find the right services

DJ: I was, but in general this creates further barriers for neurodiverse people who are more likely to have coexisting coping mechanisms.

ZG: Yes, unfortunately. We have listed many barriers today and many specific issues. Is there anything else that is important for you to convey to eating disorder professionals?

DJ: I have spoken quite specifically about my experiences of having ADHD. While I think it is an extremely important conversation for sufferers, carers and clinicians, I think it is also important not to view anyone through the lens of a diagnosis they may have been given. Working as a peer support worker has really opened my eyes to the sheer breadth of human experience and very few people neatly fit into a diagnostic box in my experience. I have a diagnosis of Binge Eating Disorder but over my life I have also restricted food, and I have also purged food. Having ADHD does not form a huge part of my identity. I know for others being neurodiverse is a huge part of how they see themselves and the world. And that’s ok. But particularly in a treatment or support setting, I think it’s really important to listen to the person themselves about their own experience and believe them. Everything I’ve spoken about in this article could also be applied to someone without any autism or ADHD diagnosis and equally, another neurodivergent person might read what I’ve written here and not relate to it at all. We are neurodiverse but we are also just people, no more or no less complex than anyone else.

ZG: I love that about your peer support work that you are able to meet the person and support them with where they are.

I believe this is the job of all eating disorder professionals: to remain  curious and not make assumptions.   As we said at the beginning of this article, fashion treatments that provide “help that helps”.

Thank you so much DJ.

We have both presented at the Irish iaedp™ chapter CONFERENCE “Nourishing Neurodiversity: Integrating Inclusive Approaches in Eating Disorder Treatment” Integrating Inclusive Approaches in Eating Disorder Treatment” organized by Chapter Chair Zuzanna Gajowiec CEDS-C

The Nourishing Neurodiversity Conference focused on highlighting the importance of

inclusivity in traditional evidence- based treatment approaches by embracing neurodivergent

voices and treatment provider perspectives.

Objectives:

– Participants will have a better understanding of the considerations and accommodations needed in treatment of neurodiverse populations.

– Participants will learn from people with lived experience of both eating disorders and neurodiversity.

– Participants will learn how to cultivate a recovery focused environment where theirneurodiverse clients can feel safe and supported.

Conference Program:

9:50 am – Registration & Welcome

10.00 – 10.10 – Welcome and Opening Remarks by Zuzanna Gajowiec

10:10 – 11.10 am Session 1 – James Downs

11:10 am – 11:20 am Break 1

11:20 am – 13:00 pm Session 2 – Bernie Wright from NEDDE

Developing a person-centred approach, understanding recovery challenges, identifying neurodivergent traits and implementing successful interventions.

13:00 pm – 13:15 pm Break 2

13:15 pm – 14:30 pm Session 3 – Zuzanna Gajowiec & William Dwyer-Joyce (DJ)

Neurodiversity-affirming care for overeating and Binge Eating Disorder.

14.30 pm – 15.00 – Q&A session

If you would like to buy the recording:

https://supportedfamilies.ie/product/conference-nourishing-neurodiversity

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