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 gone on a course called ‘The Inside of Autism’*.  While I was there, listening to the information and absorbing as much as I could, I had a pivotal realisation; 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 approximately seventy-five co-occurring conditions linked to autism and more than half of autistic people will have four or more other conditions.  According to The Autism Research Institute, autistic individuals can experience health issues more frequently than neurotypical individuals.

Conditions like dyslexia, epilepsy, depression, anxiety, Hypermobile Ehlers Danlos Syndrome, sleep disorders, obsessive compulsive disorder, gastrointestinal issues, disordered eating, and ADHD are the most common.  And 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.

‌This spurred me on to investigate my poor health, and I found out that I have fibromyalgia – a chronic pain disorder which can be particularly challenging for autistic individuals due to sensory sensitivities and difficulties in expressing pain – alongside  Hypermobile Ehlers Danlos Syndrome and chronic fatigue syndrome, both of which can exacerbate existing sensory issues and contribute to heightened anxiety and fatigue levels.‌  I also found out that I have IBS, Reynaud’s Syndrome and chronic pain too.

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.

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

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