As a Clinical Psychologist and a parent, I've always believed in the strength of neurodiversity. Every individual, regardless of their neurological differences, brings a unique perspective to the world. My journey with understanding neurodiversity took a profound turn when my son was diagnosed with autism. Today, I want to share my story of exploring Hyperbaric Oxygen Therapy (HBOT) as a part of my holistic approach to support my son's development.
Understanding Autism and Neurodiversity
Before diving into my experience with Hyperbaric Oxygen Therapy, let's pause for a moment to appreciate neurodiversity. Neurodiversity is the understanding that neurological differences, such as autism, ADHD, or dyslexia, are natural variations of the human brain. It's about understanding and embracing these differences rather than pathologizing them. It's a perspective that promotes inclusion, acceptance, and support for individuals with diverse neurotypes.
My Journey with Understanding Autism
As a parent, my journey with understanding my son’s diagnosis was deeply intertwined with my professional knowledge. I understood that autism was a part of the diverse tapestry of human neurology, but that understanding did not erase the complicated feelings I experienced. There was a mix of emotions - love, acceptance, and pride in my child's uniqueness, but also concern and worry about the potential struggles he might face in a world that might not always understand him.
Parenting often brought forth numerous challenges, including trying to support my son during intense meltdowns, significant sleep issues, and communication struggles. Juggling these challenges alongside my own battle with sleep deprivation was undeniably overwhelming and took its toll on my own mental-wellbeing at times. I want to emphasize that, just like anyone else, my profession as a psychologist doesn't make me immune to the emotional toll that parenting can take, neither does it mean I understand absolutely everything to do with the brain - not least since the science in this area is developing all the time.
As a Clinical Psychologist in Birmingham, I had been trained to be open-minded and non-judgmental in my professional practice, but facing these conflicting feelings within my own heart and mind was a more personal and intricate endeavour. In the early stages, well before his diagnosis, the inability to partake in interactive play with my infant, in a manner that brought joy to both of us, was disheartening and filled me with worry and frustration. Being unable to have eye-contact with him and struggling to bring him comfort, despite my efforts filled with calmness, love, and resourcefulness, was a challenge to so many of my parenting expectations. Despite my better judgement questions such as “What is wrong with me?” and “What is wrong with him?” began to play on my mind.
From a psychological standpoint, it was crucial for me to navigate these emotions mindfully and compassionately. Understanding my son required a deep exploration of my own biases and preconceptions. As he moved out of the infant phase and it became clearer that he was autistic, my son's neurodiversity forced me to confront my own unconscious biases and preconceptions. It was a profound exploration of my own subconscious understanding of what is considered "normal" child development by society and a deeper connection to the fact that these norms are often based on arbitrary standards. This journey challenged me to question the very essence of what it means to be "different" and to further embrace the idea that neurodiversity is not a deviation from a norm but simply a natural variation in the human experience.
As I delved deeper into my journey of the embracing and understanding of autism, I recognised the invaluable wisdom and perspectives shared by autistic adults. Joining online communities of autistic individuals allowed me to connect with those who truly understand the experience from within. Their insights have been a guiding light, helping me gain a richer understanding and appreciation of my son's world. In the early days of my journey for example, enquiring about my son's fascination with fire extinguishers and receiving the unanimous responses of "Well, why wouldn’t he be fascinated?" was truly enlightening and encouraged me to examine my own biases more closely.
Drawing from psychological theories, I recognized the importance of embracing a strengths-based approach. Instead of focusing solely on the challenges my son might encounter, which were very apparent, I also began to celebrate his unique strengths and talents. This shift in perspective allowed me to see his differences as assets rather than deficits, reinforcing the concept of neurodiversity in practice.
Hyperbaric Oxygen Therapy: An Unconventional Approach
While I discovered numerous valuable resources and gained a wealth of knowledge from the neurodiverse community, a large portion of my research and online interactions left me feeling frustrated. It was disheartening to see that many of the discussions seemed to focus on medicalizing and adopting ableist viewpoints. When well-intentioned advice was given regarding ways to "treat" or "alter" the "symptoms" of autism, I felt a mix of frustration and offense. Such suggestions did not resonate with my personal understanding of autism, nor did they reflect my feelings about my son's unique journey. I promptly dismissed any suggestions in this vein, yet simultaneously, I recognized distinct areas where he needed support and was eager to assist him in navigating these challenges to the best of my ability.
Amid my exploration of various approaches, I encountered Hyperbaric Oxygen Therapy, a treatment modality that involves breathing pure oxygen in a pressurized chamber. HBOT has been clinically proven effective for conditions such as decompression sickness, carbon monoxide poisoning, gas gangrene, diabetic foot ulcers, radiation tissue damage, crush injuries, compartment syndrome, and some wound healing cases. The therapy is becoming increasingly popular for general wellbeing with many celebrities swearing by it for general health and wellbeing. Some studies have also suggested that HBOT may have potential benefits for autistic individuals by improving cognitive function, reducing inflammation, and enhancing overall well-being.
Whilst some studies have shown positive outcomes in Autism others have shown mixed results. As a Clinical Psychologist I am acutely aware that it's essential to approach any therapy, especially unconventional ones, with an open mind and careful consideration. Based on my research, I learned that inflammation is associated with autism in some individuals (though not all). This led me to consider whether inflammation might contribute to some of my son's challenges. Given that HBOT can address inflammation, my interest in exploring its potential grew.
The evidence that HBOT could help autistic individuals is inconclusive. In the studies I have seen, sample sizes are small and there are varying methodologies. In the world of medical research, we engage in a continuous process of scrutinizing and evaluating studies. It's a vital part of our journey toward understanding various treatments and interventions. One essential aspect to keep in mind is that the absence of definitive proof at a specific moment in time should not automatically dismiss the potential effectiveness of a particular approach.
Science and medicine are dynamic fields, and new discoveries are made as we explore and question existing knowledge. So, even if we haven't yet established conclusive evidence for a treatment, it doesn't close the door to its possible benefits. It encourages us to delve deeper, to ask more questions, and to remain open to the possibilities that may lie ahead in our pursuit of better health and well-being.
My Decision and Consultation
Before diving into HBOT, I consulted with medical professionals, including my son's paediatrician and GP. I researched and reached out to specialists both in the United States and Israel, where a broader spectrum of health approaches is often embraced. I believe in the importance of evidence-based practices, and I wanted to ensure that HBOT was safe and appropriate for my son's specific needs. My healthcare team was supportive, and cautiously open minded; they helped me make an informed decision and managed expectations.
I conducted extensive research on the potential risks and side-effects associated with the treatment. One particular concern I read about was the risk of fire hazard, although this is rare when safety procedures are adhered to. It is important to be aware that the risk of fire exists in pressurized environments, such as airplanes and similar settings. This risk is not significantly different from that of an HBOT chamber so by selecting a reputable licensed facility operated by qualified professionals who follow chamber safety standards I was not concerned.
While Hyperbaric Oxygen Therapy (HBOT) is generally considered safe when administered correctly, there are potential side-effects to be aware of, such as pressure-related ear discomfort, sinus pain, and the possibility of oxygen toxicity at higher pressures. To address these concerns, I decided I would closely monitor my son's comfort level during the sessions and adjust the treatment protocol accordingly. We planned to start at lower pressure and shorter sessions, gradually increasing the pressure and duration as my son became more comfortable. This approach would help to mitigate any potential sinus or ear pain. I also knew that we would always adhered to the recommended number of sessions, pressure and break guidelines to ensure the safety of the treatment and prevent oxygen toxicity.
I share these details with you because I believe in the importance of informed decision-making and ensuring the well-being of our special needs children. It's crucial as parents and carers to be diligent in our research, consult with professionals, and prioritise the safety and comfort of our children throughout any treatment journey.
The Journey Begins
Once I made the decision to explore HBOT, I embarked on a journey filled with curiosity. I had already made links with a local provider in Birmingham and was keen to get started. However, I was of course concerned how my son, with his limited understanding, would perceive this unfamiliar and unusual experience. He adores visual signs and they resonate with him much more than verbal words, so to prepare him, I showed him pictures and explained, in the simplest terms, what would happen step by step. When he saw the chamber for the first time, he exclaimed, "submarine!" and from that moment on, that's what we affectionately called it. Surprisingly, he seemed unperturbed by the idea of entering.
Inside the hyperbaric chamber, my son's experience was closely monitored by trained professionals. I was pleased to learn that it is standard protocol for a carer to be able to accompany the user, and together, we made the chamber a comfortable and enjoyable space. We brought along his favourite snacks, allowing us to snack, relax, and watch his beloved TV shows during the sessions. He was never alone in there, and ensuring his comfort and well-being remained our top priority.
Communication during our time in the chamber presented a unique challenge since my son's verbal abilities were limited. To bridge this gap, we relied on hand signals to express ourselves and understand each other better. Additionally, we found that thick smoothies slurped through a straw and crunchy snacks helped his ears pop (which is necessary in the pressurised environment – like being on a plane), enhancing his overall comfort during the sessions. It was remarkable to witness how well he adapted to this new experience, and it became a bonding opportunity for us as well. After the first couple of sessions my son completely embraced the routine of attending – I think because it was so structured and predictable he enjoyed it – to the point of him telling me “Submarine!” even before it was time to go.
The Results: Our Personal Experience
It's crucial to emphasise that the goal of trying HBOT was not to "eliminate" traits of autism; instead, it aimed to enhance areas where there may be challenges, especially those related to issues like inflammation. After several HBOT sessions, I began to notice some encouraging changes in my son. I can't pinpoint the exact reasons behind these changes as it's important to acknowledge that children often undergo various phases and transformations anyway. However, following the initial few sessions of Hyperbaric Oxygen Therapy (HBOT), I observed some positive developments in my son's well-being.
Notably, his sleep patterns showed significant improvement early on. He transitioned from restlessness and frequent night-time awakenings to uninterrupted, sound sleep throughout the entire night. This transformation brought a welcome sense of relief, especially considering the sleep-related challenges we had faced previously. As time went on, his ability to tolerate changes began to show surprising progress. I vividly recall a situation where I had to change his duvet due to an unfortunate incident involving our cat. While I braced myself for the anticipated meltdown, to my astonishment, there was none. He adapted to the change with unexpected ease, a stark departure from previous experiences. I was completely shocked.
In another delightful turn of events, he displayed a newfound tolerance for music in the car and even joined in singing along. It was truly a revelation, and I couldn't help but wonder if there was a connection to the HBOT sessions. However, it's essential to acknowledge that causation can be challenging to establish definitively, especially with a child who cannot express themselves fully verbally.
After four 5-day weeks of HBOT sessions, we temporarily stopped due to practical reasons. Regrettably, about a month later, we noticed a decline in some of the positive changes we had observed. This downturn did coincide with a change at school, making it even more challenging to pinpoint the exact cause. While my son appeared to enjoy school so I had no direct reason to suspect that as the cause, his inability to communicate fully verbally meant that we could only speculate about the potential factors at play.
Currently, we have resumed the HBOT sessions, and I will diligently continue to monitor his progress. The intricacies of the journey with HBOT may remain a mystery for now, but my commitment to providing him with the best possible support and an open-mindedness to the holistic approach to health remains my priority.
Final Thoughts
My experience with Hyperbaric Oxygen Therapy is just one chapter in my ongoing journey with supporting my son. It's essential to remember that what works for one individual may not work for another, and there is no one-size-fits-all approach. My goal is not to promote any specific therapy but rather to share my story.
As a Clinical Psychologist, I understand the importance of respecting and nurturing neurodiversity. My experience with #Hyperbaric Oxygen Therapy has taught me that the journey of parenting an autistic child is multifaceted, filled with highs and lows, but ultimately guided by love, acceptance, and a commitment to helping my son thrive in his unique way. I encourage all parents and caregivers to approach their own neurodiverse journeys with an open heart, an open mind, and a deep appreciation for the beautiful tapestry of #neurodiversity that enriches our world.
Further reading:
Autism Birmingham - autismwestmidlands