Advocacy » Anecdotes from the Frontlines of Speech-language Therapy » Star Brooks: An amazing journey!

Star Brooks: An amazing journey!

DOB: 24.08.2002

Medical conditions/diagnosis: High functioning autism (ASD), Hypermobile Ehlers Danlos syndrome (hEds), post traumatic stress disorder (PTSD), auditory processing disorder (APD), avoidant restrictive food intake disorder (ARFID), functional dysphagia, delayed gastric emptying.
Speech and language therapist: Mershen

Info and overview: My name is Star Brooks. I am 21 years old. I first developed swallowing issues in 2021 and sought the help of a speech and language therapist - in May 2023.

My Mum (Ruth Brooks) knew Mershen and arranged for us to meet. I’ve continued seeing Mershen semi-regularly. After almost two years of treatment through the DHB, resulting in little to no progress, six months working with Mershen has been transformational.

How my condition impacts my life

In 2021, I was diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDs). For me, this came with digestive disorders as well as allergies, food sensitivities, chronic pain, loss of mobility and chronic fatigue.

I also have High Functioning Autism (ASD) and Post Traumatic Stress Disorder (PTSD), which further complicates my case.

At the time I went to see Mershen, I had lost over 12kg in nine months, was 36kg (BMI 14) and feeling very stuck, depressed and hopeless.

DHB dietitians, Gastroenterologists, and psychologists were at a loss. Through testing at the DHB in 2022, it became clear that I have delayed gastric emptying/slow motility, which means that I can only eat a very small amount (1⁄4-1⁄2 cup) of specific foods.

I feel full quite quickly and experience a range of gastro symptoms such as reflux, stomach pain, nausea, vomiting after eating, and chronic constipation. I also have loss of appetite, no hunger signals and long-standing issues with swallowing.

While there was nothing mechanically wrong with my swallowing, it was thought that overall muscle loss was a contributing factor. Along with the physical symptoms, I had a psychological side to it all. When I first met Mershen, I would eat nothing but thin pumpkin soup - 1⁄4 cup twice a day, and the occasional baby food pouch.

My soup had to be out of the same little ramekin and the same baby spoon, or I wouldn't eat it. I was 99% reliant on tube feeding and so scared of eating solid food or anything but what was on my safe food list (which wasn’t much).

The choking incidents I had experienced were quite traumatising for me - when they happened, I couldn’t breathe and would often faint before my Mum provided first aid intervention to dislodge whatever was stuck in my throat. Because of this, I had big fears around eating when I was alone and eating in front of other people.

Textures were an issue for me, food had to be smooth, but even then, I’d often get overwhelmed and scared of the pain eating would cause. With being at such a low weight, I couldn’t think rationally, couldn't keep to my medical plan and wasn’t making good decisions.

My NG feeding rate was still low - I was scared to put the rate up, and the dietitian, especially, was getting very frustrated. I couldn’t make decisions on what to eat and experienced no pleasure while eating. The time it took me to eat such a small amount of food was also off-putting - it took me over an hour to eat 1⁄4 cup of pumpkin soup.

Another part of the psychological barriers to eating was trauma. As a teen, I had an eating disorder and was hospitalised multiple times for being medically unstable, and I force-fed via an NG tube. I didn’t make the lives of the nurses and doctors easy – which meant I had a full-time watch, plus a security guard with me.

These memories and experiences have influenced my interactions with medical professionals as well as food and have been a barrier to positive engagement with both.

In a 2022 hospital admission, I willingly accepted an NG tube so I could take care of my body and my health in my current situation - I knew it was what I needed to do.

But with doing so, the tube attached to my face was a constant trigger, and I often reacted to the help being provided to me out of old feelings, which wasn’t helpful for anyone, including myself.

I had very rigid ideas about what foods were good and bad, and adding to this confusion were the years of advice from so many different professionals - I didn’t know what was right anymore.

The toll my condition took on me socially and emotionally was huge. I felt depressed, hopeless and isolated. I really missed the social side of food. Others would be eating, talking and laughing, and I was always the odd one out, standing there watching or sitting off to the side.

Food felt like an alien. Something so foreign that I no longer looked at food and thought about eating it. It’s hard not being able to eat or feel confident to eat what I can in front of others. People ask questions, feel sorry for me, and feel bad that they are eating and I’m not. Or I feel embarrassed to eat baby food in front of others or be eating something which looks different or odd to them. It creates awkward conversations and questions that I don’t want to answer.

I want people to see me, to see Star - a unique and capable individual. But all they see is disability because I have a tube on my face and carry around my pump, so they create their own conclusions about how things are for me and what I am like before actually getting to know me.

This is frustrating.

It’s amazing how much food connects people, whether it’s friends going to a cafe, having dinner at the table with family, a work function, a birthday, Christmas, or celebrations.

It all revolves around food, and when you can’t participate in that, life gets very small, depressing and isolated.

With being so tired and sore all the time and spending a lot of my time in medical treatment, it means I don’t really have friends, just professionals. Every week is filled up with support workers and professionals - doctors, physios, psychologists, social workers, occupational therapists, you name it, and they are in there somewhere.

I didn’t have, and still have, little time or energy for doing anything fun or productive.

It’s amazing to have such a wonderful support team, and it’s also wonderful to feel a part of the community. So, community involvement and independence are something I am working on. I do miss food. A lot. I remember some of my favourite foods years ago and wish I could eat them again.

I look into the food court in the mall, and even though the smells no longer trigger appetite or even desire to eat them, I look at all those people eating together, laughing and talking, and I desperately hope that one day I might be able to do that too.

The other thing the swallowing and digestive issues impacted was my regulation strategies. Having ASD means that I can get dysregulated by small things; I can be under-aroused or over-aroused, and oral sensory input was one of the main ways I  managed this.

For example, when I was under-aroused, I would suck an ice block or suck frozen fruit, or when over-aroused, I'd munch a carrot or apple or other crunchy vegetable.

Having difficulty swallowing meant it ruled out crunchy foods, so I was forced to find other ways to regulate myself.

What made you seek out a speech-language therapist (SLT)?

 I was having a lot of issues with choking on food and food restrictions beyond that of my swallowing difficulties and also beyond that of another medical diagnosis. This is why I have been recently diagnosed with ARFID. I had a strong desire to increase my food range - texture and variety, confidence in eating around other people and improve my swallowing.

Read more about Star's amazing journey - find out about his SLT treatment and if it was successful.

Read more of Star's amazing journey