Unveiling My Autistic Identity: Navigating Late Discovery and Co-Occurring Conditions

Two years ago I was a struggling therapist, I was struggling with my health and my wellbeing, whilst not unusual for me, I was aware my health was declining fast. It was during attendance of a course in Understanding Autism that I had embarked on in order to enhance my work as a counsellor for neurodivergent clients that I came to a pivotal realisation – I am autistic. As I reflected on my past, it became increasingly clear that this aspect of my identity had been overlooked in childhood, leaving a trail of challenges that I had struggled to understand. The late realisation brought relief in understanding myself better, but it also unearthed a maze of complexities that come with being neurodivergent and navigating a world that often fails to accommodate our unique needs.

One of the biggest hurdles I faced was coming to terms with the concept of autistic masking. For years, I had unknowingly camouflaged my true self to fit societal norms and expectations, leading to a disconnect between who I presented as and who I truly am. Unraveling this mask was both liberating and frightening, as I grappled with the question of how to authentically express myself in a world that often demands conformity. Unmasking is an ongoing process for me, having personal therapy and encouraging myself to share my story has been beneficial but I won’t lie and say it is easy, I am still getting to know myself.

The late realisation that I am autistic not only shed light on how being neurodivergent in a neurotypical world has impacted in many ways, but also it unveiled a web of co-occurring conditions that are frequently associated with neurodivergency. There are approximately 75 co-occurring conditions linked to autism; 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; there are many

conditions, some of the most common are dyslexia, epilepsy, depression, anxiety, hypermobility Ehlers Danlos Syndrome, Sleep disorders, OCD, gastrointestinal issues, Disordered eating, and ADHD.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 when there are difficulties

with communication and expression.

Fibromyalgia, a chronic pain disorder, can be particularly challenging for autistic individuals due to sensory sensitivities and difficulties in expressing pain. Similarly, Ehlers Danlos syndrome hypermobility and chronic fatigue syndrome can exacerbate existing sensory issues and contribute to heightened anxiety and fatigue levels. Gastrointestinal problems like IBS, often linked to stress and anxiety, can further complicate the daily lives of autistic individuals, impacting their overall well-being and quality of life.

Poor mental health is often prevalent among autistic individuals, this topic deserves further investigation as it is not clear if the cause of this is often entangled with the environment and ableist treatment these people likely experience.

One of the most profound experiences I faced post-realisation was 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, it was rather that I had been in burnout for some time, I just didn’t understand what was happening. I can reflect and see that I have experienced autistic burnout several times in my life, each time has been beyond difficult. Burnout can look different for everyone, 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, I know that many autistic people will agree when I state that some therapy is unhelpful for neurodivergent people; I have 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 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.

Navigating life as an autistic individual with co-occurring conditions is a multifaceted journey filled with challenges, triumphs, and moments of self-discovery. By raising awareness about the links between neurodivergency, co-occurring conditions, and autistic masking, we can create a more inclusive and supportive environment for all individuals.

I have masked my whole life as being independent and self assured, this mask developed

due to childhood neglect and also navigating life as an autistic female who didn’t know she was autistic, rather I felt I was weird, like an alien- at times I just believed I was broken. The mask was so fixed that I had become so far removed from myself I was unable to recognise how much I was suffering. I experience chronic pain, mobility issues, gastrointestinal problems and chronic fatigue daily, I was unable to tap into that, I didn’t share it with other people because I did not trust my own experience. I pushed on and because of that my health declined further as did my mental health. I didn’t understand that I could ask for help, I didn’t think to seek medical assistance because I was afraid of appearing lazy or to be told I was being dramatic- this links back to never being validated. Growing up, and beyond, autistic people are often corrected for their way of being, they are discouraged often from expressing themselves and their needs and so it is not unusual to shut those parts down, even to ourselves.

Autistic people are just people, I am a person, I am capable of many things but I also struggle at times and I do need support. I sometimes wonder if my health may not have declined so rapidly had I been realised earlier in life, of that I will never know.

I want to encourage neurodivergent individuals to seek support, but I also want to raise conversations about awareness amongst healthcare professionals. I was diagnosed with epilepsy at the age of thirteen; around 12% of autistic people have epilepsy- if healthcare professionals were more aware of co-occurring conditions I wonder if I could have been diagnosed as being autistic in earlier life.

As we continue to advocate for greater understanding of neurodiversity, let us also reaffirm the importance of self-care, therapy, and community support in navigating the complexities of late diagnosis/discovery and its associated challenges. Together, we can unravel the layers of masking, embrace our true selves, and pave the way for a more compassionate and inclusive society for all.

More about me; I am an experienced and qualified therapist offering online and face to face therapy, my aim is to support individuals in their own healing journey with compassion and awareness.

I like to write and share in a hope that I can give back to others, when I first began my unmasking journey and learning about non-visible disabilities, it was such a help to me to discover the stories of other people, I thank them all for their courage and inspiration.

If you are interested in working with me in a therapeutic way or if you are interested in some of the training I offer please have a look at my webpage https://www.truetherapycounselling.co.uk/

The training programme I took part in that was so helpful to my own process and in enhancing my understanding of autism can be found here https://kmrtraining.teachable.com/courses/an-autistic-identity?affcode=903653_nnsf-g7-