Ana Cloudy: Harrowing Impacts Of A Late Autism Diagnosis

A Guest Post

I was approached by this follower and asked if I would edit and publish their work. Here is the full piece for you to read. David.

My name is Ana, I am currently twenty-two years old. I am severely blind, as well as Autistic. As my autism was diagnosed late, the impacts on my life have been extremely severe.

I had great potential of being much more functional, but due to my early needs being unwittingly ignored, the consequences have been rather devastating.

From the moment I entered the world in 2002, in the small Latvian town of Rezekne, my life has been a journey marked by unique challenges and unwavering determination.

Latvia, with its enchanting landscapes and profound history, is where my story began, but my early years were far from easy. I was born prematurely and underdeveloped, requiring immediate medical attention. The urgency of my situation led to a frantic ambulance ride to Riga, the capital city, where I was to be placed in an incubator. During this transport, the blood supply to my eyes was severely compromised, resulting in retinal detachment. The subsequent laser treatment, intended to save my vision, was tragically performed by an unqualified practitioner. This resulted in further damage, nearly burning my eyes out completely.

Miraculously, my right eye was salvaged, granting me limited sight. However, my left eye suffered irreparable damage, forever leaving it blind; a “dead eye” as I often refer to it.

“I am severely blind” I often explain. I wear glasses because I have some vision in my right eye, but my left eye is completely blind. My sight loss journey began as soon as I was born.

Countless operations followed, with frequent trips to Russia in a desperate attempt to restore my sight.

Eventually, I was diagnosed with retinopathy of prematurity, retinal dystrophy, and glaucoma. These conditions profoundly impact my vision. Unlike a seeing person who can simply turn their eyes to look, I have virtually no peripheral vision. My visual field is exceedingly small, forcing me to turn my entire head to focus on anything. This is what it means to have central vision: vision only in the middle of my eye, requiring me to “aim” my head to see in a specific direction.

My autism, which wasn’t diagnosed until I moved to England, further complicated matters. My teachers were kind, but no one understood why I struggled to be around other children or why I couldn’t handle the noise. I would often lash out, becoming aggressive, which unfortunately made me a threat to my classmates.

School was frightening.

There were pupils with cognitive differences who were often unsupervised and would attack me, knock me down, leaving me terrified to leave the classroom, even though it was already loud and unbearable.

The weight of these challenges led to a severe breakdown, and at the young age of eleven, I was hospitalized with severe depression and suicidal thoughts.

I desperately wanted to keep up with my education, but the school environment was simply too much to bear.

Adding to my school struggles, I was also attending a music school, learning to play the piano. During one lesson, my teacher pulled my wrist, causing a severe injury. The muscles in my palm were also severely strained, but no one believed me. I was forced to continue attending music school alongside my regular school. It wasn’t until a physiotherapist at school examined my hand and was horrified that my parents finally realized the extent of the damage. My hand wasn’t functioning properly, and I had to wear a bandage to keep it in place.

This incident left permanent damage, and my left hand is now stiffer than my right.

However, the busy life my family led, from celebrations to daily gatherings around the TV, often felt overwhelming, too, mirroring my school experience. After coming home from a loud and stressful school environment, I would be confronted by a flat where the television was always on, leaving me with no opportunity for silence or a way to calm my senses.

This also contributed to my hospitalization in 2013.

Unfortunately, my circumstances remained the same after my discharge.

It wasn't until my autism diagnosis in England that my family realized why I was finding everything so difficult and couldn’t cope with the constant noise.

My autism diagnosis only came to me in my teenage years, after I had moved to England at the age of twelve in 2014. Only then did my ongoing struggles begin to make sense to my family. However, the permanent damage by lack of support back in the years, has unfortunately remained and will be with me till the end of my days.

As my family were completely unaware of how to look after me, I was never allowed to express any struggles I had with noise, chaos and life in general. Any attempts to raise a problem with the family, resulted in me getting rebuked by them.

For instance, when I came home from school asking for peace at home, I would be told to respect my family’s wishes and allow them to do what they wanted. They would not acknowledge the fact that I could not bear life at school due to the loudness of it, and that this loudness was mirrored at home 24/7.

There was no escape from it either, as the living room was in the middle of the flat and all other rooms were surrounding it, which meant that I would hear the TV in whichever room I would go to.

The same ordeal befell me when I sustained the injury at the music school, the details of which I already described.

The family believed that I rebelled against music school due to not liking to go to it, which meant that my complaints about an injured hand were never taken seriously. In fact, I dare to think that I wasn’t believed to begin with, let alone taken seriously. Due to my pain-intolerance, I had difficulties coping with the pain in my left hand after the injury was sustained. I was unable to use the hand to hold or carry anything, nor was I able to play the piano properly.

The only thing that I was able to do with that hand without pain, was read braille, as it did not require movement of the fingers or the wrist.

How, do you believe, I felt to know that my family only believed me when I was backed up by a professional?

Are your parents not supposed to be the first people to go to when a child runs into a problem?

Well, I guess not for me.

And now, whenever I have the need to inform my family of something, whether it is good or bad news, I experience the sense of paralysis and fear, which prevents me from being able to open my lips and speak freely. Even till this day people do not understand why I have this fear, even my parents themselves are baffled every time we encounter a problem like this. But the truth is, according to Bandura’s social learning theory, when a child is rebuked for an action, or has a bad experience after they do something, they learn not to do it again so as not to get told off or not to get the same bad experience again.

When we rebuke our kids for something, we do it in a bid to prevent them from repeating the same action again and to make them understand that a specific action is bad or unacceptable.

Unfortunately, this is exactly the experience I had, only not for doing something “naughty” or for being badly behaved, but rather for making my parents aware of something I profoundly struggled with.

Looking back, I believe that the story of my life would have been very different, had I been diagnosed Autistic back in Latvia.

Perhaps this would have made the family realise that I wasn’t being “disobedient” for the sake of it, but rather because some of the things that most people find easy and somewhat “normal”, were in fact a huge struggle for me and that my ordeal needed to be addressed even at that time. Perhaps then I would not have been hospitalized for four weeks, perhaps then I would not be so terrified to talk about personal matters with my family now.

In conclusion, undiagnosed autism can have a detrimental impact on an individual’s upbringing, leading to permanent effects to their personality, independence and future life. Even the idea of independence itself is harrowing to me, as it makes me believe that being independent means being left alone to fend for yourself in total abandonment.

For that is what it meant for me back in the years.

This article was edited and published by David to highlight not only the risks of late diagnosis but also the impact of multiple vulnerabilities in a world that ignores us.

Thank you Ana for having the courage to share your story, I hope that in some way the experience has been cathartic.