The Complex Blend of Autism, ADHD, and Chronic Illness

For those who don't know me, I am the proud mother of a remarkable 15-year-old girl named Jody. She is the main inspiration behind NeuroNatal?, a project created out of compassion and necessity, motivated by lived experiences. Jody is autistic; I also believe she has ADHD, but as many of you know, the process for proper assessment can be prolonged. I often refer to her as AuDHD—a combination uniquely hers. Self-identification is perfectly valid.

I am compelled to share this story with you all for two main reasons: first, to connect with other families on a similar journey so that no one feels alone in their struggles, and second, to express the overwhelming anguish and distress that has coloured our lives lately. I want to give my daughter and others like her a voice as we move through this challenging chapter.

Jody is not doing well. She has lost over two stone in weight in just four to six months, which is concerning. Initially, I thought her symptoms - headaches, vomiting, and diarrhoea - were related to her menstrual cycle. However, it has become painfully clear that this is a more significant issue.

Amidst my fears, I find solace in remembering Jody at her happiest. She adores plushies - those soft, cuddly toys that have been her constant companions. The money we've spent on them over the years could have bought a house, yet every penny was worth it to see her smile. In moments of despair, I often revisit photos of her with her beloved collection, reminding myself that even the darkest days have their light.

A Medical Odyssey

Our story began long before the current turmoil. When Jody was just a toddler, she developed painful sores around her mouth. As she struggled to communicate, I felt the depths of my own helplessness. Countless trips to the GP ensued, each with the frustration of ineffective treatments. After seeing the same GP week on week, we were finally referred to a paediatrician, which led to a diagnosis of orofacial granulomatosis (OFG) a rare form of Crohns disease-confined to the mouth. This rare condition meant significant dietary restrictions.

Jody's early years were challenging. We learned to celebrate the small victories. A strict diet improved her OFG symptoms. Despite facing other hurdles like recurrent ear infections, hospital admissions, and speech interventions, Jody was a happy child. Just when we thought we were finding our footing again, a new storm approached.

I Thought she was Dead

One evening, while Jody lay asleep on my lap while I was watching TV, I had this overwhelming sense of something wrong. I looked down at Jody, who had become unresponsive. Panic surged through me. I thought I was losing her. Thankfully, it turned out to be a seizure—leading to a diagnosis of epilepsy and a swift start on some medications. This introduced a new layer of complexity to her health.

?We moved to Guernsey when Jody was six. She joined in year two and completed up to year three. For year four, Jody joined a nurturing special needs school where she could thrive, and she has continued to blossom in an environment that caters to her unique learning style. Initially, being around other parents with children like mine felt like a breath of fresh air. Intentional or otherwise, I always felt ‘apologetic’ for Jody when she was in the mainstream. I feel frustrated with myself for that thought when I reflect on it, but it was a learning curve that I will explore more in therapy, I'm sure. As Jody entered her teenage years, she began to face new challenges, testing her resilience and determination.

?A Cascade of Health Issues

Recently, Jody has been experiencing frequent illnesses such as vomiting, diarrhoea, skin rashes, bleeding gums and migraines. Each new symptom has increased my level of concern and emphasised the harsh reality of her mental and physical struggles.

Desperate for a deeper understanding, I sought an online capillary blood test to try to minimise Jody’s distress from needles and medical settings. But, as the results emerged, I had more questions than answers because the testing led to the discovery of a condition called “IgA deficiency,” which was both illuminating and infuriating. Blood obtained from Jody over eight years ago had shown this deficiency, but the result was neglected, and we were never informed.

Further tests showed her stool sample result was alarmingly high for Calprotectin- a protein released by the bowel when inflamed. This result indicates an inflammatory bowel condition requiring immediate attention and further testing.

We have just returned from a family holiday in France, where Jody struggled with continuous vomiting, diarrhoea and fatigue. Finally, the weight of our circumstances felt unbearable. This situation forced us to confront the practicalities of medical examinations and their emotional toll on us all.

In candid moments, my husband and I quietly share our fears, hoping for the best yet dreading the worst. It has become custom for one of us to cry ourselves to sleep at night, consumed with the worry of what is happening to our daughter.

Jody’s interoceptive awareness is dulled at times, which means she struggles to identify or verbalise when hungry or thirsty, and her ‘window of tolerance’ is significantly reduced. Some might describe her as ‘hangry’. This is also true of Jody’s anxiety, or when she is feeling unwell, so the holiday was fraught with irritability, shouting, children crying and fighting. As responsible parents, we couldn’t wait to get home to restore our sanity.

As I write this, we are now preparing to go for numerous tests in Southampton to unravel what appears to be a complex web of health issues shared amongst neurodivergent people. The thought of putting her through further procedures—blood tests, an MRI and endoscopies/colonoscopies—fills me with dread, yet I cling to the hope that the answers lie just beyond the horizon and quick resolution. I pray for Jody’s compliance with all these procedures to minimise her distress and psychological trauma.

Resilience Through Connection

As we begin this challenging journey, I am reminded of the importance of community and connection. If you find yourself on a similar path, please don't hesitate to reach out. No matter how difficult it is to verbalise, your stories are more powerful than ever imagined. Sharing experiences breaks the isolation and loneliness often felt by others enduring such challenges.

Jody may be facing a life-changing diagnosis, but she is surrounded by love, resilience, and the unwavering belief that we will find a way through. As her mother, I vow to keep fighting for her voice, her needs and her health until my body draws its last breath. Each day still offers moments of happiness and laughter, even amidst storms of uncertainty.

Please keep us in your thoughts as we try to navigate this new territory. We hope you'll share our journey to shed light on the intricate web of neurodivergence, health and well-being that profoundly affects individuals like Jody and their wider families.

It’s time to ignite conversations about the interconnected nature of neurodivergence and gut health. Nothing exists in isolation; no man is an island. It doesn't feel like rocket science.