In 2009, at the age of 46, I discovered that I had cerebral palsy. I later learned through medical records that I had actually been diagnosed at the age of two. In January 2019, at the age of 56, I was diagnosed with autism after a lifetime of emotional and psychological struggles.
When people hear the words cerebral palsy, they usually think about movement: muscles, walking, posture, balance, co-ordination, and physical disability.
My understanding of this did not come from a single moment or a single conversation. Over the years, various discussions with professionals highlighted differences that were often recognised but not always fully explored. Looking back, many experiences that once seemed disconnected now make far more sense.
What is often overlooked is that cerebral palsy is fundamentally a brain injury. The physical effects are simply the most visible consequences.
The brain controls far more than movement. It processes information, interprets sensations, regulates behaviour, and helps us to understand both ourselves and other people. For some individuals, neurological injury or neuro developmental differences may also affect emotional processing.
One term that describes this pattern is alexithymia – difficulty recognising, identifying, or describing emotions.
Alexithymia is often associated with autism and has also been observed in people with other neurological conditions. For me, it provides a useful framework for understanding experiences I have lived with throughout my life.
This is often misunderstood. People frequently assume that if someone doesn't express emotion, they don't care. But that's not true – the absence of a felt emotional signal is not the same as the absence of compassion.
Researchers sometimes link alexithymia to differences in interoception – the brain's ability to detect and interpret signals from within the body. When this processing is reduced or altered, emotional experiences may not enter conscious awareness in the way it does for other people.
As a result, a person may understand emotions intellectually without experiencing them in the conventional sense.
In my own case, I can recognise when someone is suffering. I understand why they are distressed and what support might help. I can respond with kindness and act compassionately. What's missing is the internal emotional sensation that many people describe when witnessing another person's pain.
I can understand empathy. I can act compassionately. But I don't experience the emotional feeling itself.
That difference is neurological, not personal.
The problem is that society often measures caring through emotional expression. When those expected emotional signals are absent, people may assume that caring is absent too.
Yet behaviour tells a different story.
Compassion is not only something people feel. It's also something people do.
For many years I lacked language to describe this experience. Alexithymia provides the framework that helps explain a pattern I have lived with throughout my life.
Sometimes the most important thing a label provides is not certainty.
Sometimes it provides language.
And having language for an experience can be the first step towards being understood.
Wow, this definitely explains so much. I didn't realize they had a term for this condition, so it's great to know.
Mine stems from a childhood of brainwashing and exposure to traumatic events, where yours occurred from autism. It definitely wasn't fair for either of us, and knowing would have been half the battle.
The only thing that has really saved me has been an understanding of how people operate which, due to this condition, I have ignored, and always to my detriment. I am now learning to pay attention to my instincts which has made life much easier.
Thanks Randy. Yes, however we present will always be difficult, it's up to others to help us adjust in our lives.
All I can suggest is that you be who you are. Those that matter will always be okay with how you are and will want to help.