Finding out that I was autistic also explained why I felt so unwell

Two years ago, I was struggling.

It had become usual for me to not feel well, and my health seemed to be moving in a non-stop downward direction. I felt very challenged in the wellbeing department, and I was beyond fed up with the situation.

Understanding why that was, and what was going on with me, came from a very surprising direction.

To enhance my skills in supporting neurodivergent clients, I’d signed up for a course called ‘The Inside of Autism’. While I was there, taking in everything I could, I had a moment of recognition that changed everything- the lecturer was describing me.  I was autistic.

My mind raced back through my past and it became increasingly clear that this aspect of my identity had been overlooked since childhood, leaving a trail of challenges that I had struggled to understand.

And that late realisation brought both relief in understanding myself better, and a maze of neurodivergent complexities.  Being neurodivergent in a world that often fails to recognise or accommodate these unique needs is hard.

But the late realisation also shed light on why I felt so unwell as it unveiled a web of co-occurring conditions that are frequently associated with neurodivergency.

There are often dozens of co-occurring conditions linked to autism; with many clinicians and researchers now noting the complexity of overlap across physical, mental health, neurological, and sensory systems. While the number varies depending on how conditions and subcategories are grouped, studies have shown that more than half of autistic individuals will experience four or more additional conditions in their lifetime (Lai et al., 2019; Croen et al., 2015). According to the Autism Research Institute, autistic individuals also experience a range of health challenges at significantly higher rates than neurotypical people.

Conditions like dyslexia, epilepsy, depression, anxiety, Hypermobile Ehlers-Danlos Syndrome, sleep disorders, obsessive-compulsive disorder, gastrointestinal issues, disordered eating, and ADHD are among the most common. And what is often missed is how these challenges can interconnect.- for instance, gastrointestinal issues, which are frequently reported in autistic individuals can lead to vitamin and mineral deficiencies that impact mood, energy, and regulation. Sleep disturbances may exacerbate sensory sensitivity or emotional dysregulation. Anxiety can mask as inattention or shutdown. Healthcare professionals need to be vigilant and informed about these links, understanding that certain conditions can be intertwined with autism, especially in cases where masking has been prevalent or where there are difficulties with communication and expression.

Discovering all of this- much of which was new to me until I began The Inside of Autism training; it spurred me on to finally investigate my poor health. For years, I’d normalised feeling unwell; now, things were beginning to connect.

I was diagnosed with fibromyalgia: a chronic pain condition that can be particularly difficult for autistic individuals due to sensory sensitivities and challenges in expressing pain. I was also diagnosed with Hypermobile Ehlers-Danlos Syndrome and chronic fatigue syndrome, both of which can intensify sensory overwhelm and contribute to exhaustion, pain, and heightened anxiety.

I also live with epilepsy and what strikes me now is that no one ever questioned whether I might also be autistic, despite the well-established link between epilepsy and autism. Research shows that epilepsy occurs in approximately 20–30% of autistic individuals (Amiet et al., 2008). And yet I went decades without anyone joining the dots.

Alongside all this, I was diagnosed with IBS, Reynaud’s Syndrome, and persistent chronic pain. For the first time, my long-standing health struggles began to make sense; not as isolated issues, but as part of a wider, interconnected picture of being neurodivergent in a body that had been trying to cope for decades.

I finally understood why I never felt well!

Post realisation, I also experienced the profound understanding that I had autistic burnout - a state of physical, mental, and emotional exhaustion brought on by the cumulative effect of masking, sensory overload, and societal pressures. Recognising the symptoms of burnout and seeking support became paramount in my journey towards self-care and healing.

When I discovered what autistic burnout meant it was actually a relief.  It didn’t happen because I knew I was autistic, rather it was that I had been in burnout for some time, and I just didn’t understand what was happening.

I can reflect now and see that I’ve experienced autistic burnout several times in my life, each time being extremely difficult.  Burnout can look different for everyone but for me I was experiencing depression, exhaustion, confusion, apathy and loss of words.

Therapy played a crucial role in my recovery process, offering a safe space to explore my emotions, learn coping mechanisms, and develop a deeper understanding of myself.

For conditions like fibromyalgia, chronic fatigue, anxiety, and depression that often co-occur with being autistic, therapy can be a valuable tool in managing symptoms, building resilience, and fostering self-compassion.

It was important for me to find the right therapist, and I know that many autistic people will agree when I say that some therapy is unhelpful for neurodivergent people.  I experienced counselling that I felt was detrimental to my process, but working with a therapist who was supportive and who had an understanding of the autistic mind and the issues we face daily, meant that I was able to move forward in my healing journey.

Through therapy, I learned to prioritise self-care, set boundaries, and advocate for my needs – practices that have been instrumental in my healing.  By addressing the interconnected nature of my co-occurring conditions and factoring in the impacts of masking on my health, I was able to cultivate a holistic approach to my well-being that centred on self-acceptance and self-empowerment.

Two years on, I’m still learning about myself, but I’ve learned to accept my health conditions and to give myself permission to rest when I need to.  My health issues will never go away but mostly I can meet them with acceptance and move forward with a new-found mindset of true self-care. 

Navigating life as an autistic individual with co-occurring conditions is a multifaceted journey filled with challenges, triumphs, and moments of real self-discovery. 

I hope that by raising awareness about the links between neurodivergency and co-occurring conditions, we can create a healthier, more inclusive and more supportive environment for all individuals.

References:

Lai, M.-C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., et al. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819–829.

Croen, L. A., Zerbo, O., Qian, Y., Massolo, M., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism, 19(7), 814–823.

Amiet, C., Gourfinkel-An, I., Bouzamondo, A., Tordjman, S., Baulac, M., Lechat, P., & Mottron, L. (2008). Epilepsy in autism is associated with intellectual disability and gender: evidence from a meta-analysis. Biological Psychiatry, 64(7), 577–582.

Autism Research Institute. Medical Comorbidities in Autism Spectrum Disorder.

*’The Inside of Autism’ training is by Kieran Rose – details are here.

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