Autistic awakening

My name is Devaki pronounced Deeva-key. I am a writer-philosopher, singer-songwriter, and autisitc elder sharing wisdom, insight, and lived experiences through an unconventional lens.

In 2021 at 63 years old I had light bulb moment that led me to discover that I am autistic. It was important to me to get an official diagnosis for autism, so I started doing my own online research. I took many tests for autism, analysed my childhood and adult behaviour and documented what my parents told me about my behaviour growing up. I complied all this into a report to support my autism assessment. In November 2022 at 64 years old I was officially diagnosed as autistic level 2, and social-general anxiety.

I have always known I was different from most, so this came with relief and made sense of my life. However, I went through a stage of grief that I am only discovering this now, and why no one saw the red flags. I am still processing acceptance and are in a place where I want to live out my life as mostly reclusive.

I was a sensitive nervy child. I have had severe anxiety and IBS since I was a child. I have incurred many food sensitivities, years of tonsillitis, strep throats and, glandular fever. When I was 27, I had a major breakdown and battled with suicidal thoughts. In hindsight I now know this was all fuelled by autism and trauma.

I have spent most of my life poorly trying to supress my autistic traits. I experience sensory overload easily and it severely debilitates me. From 16 to early 30s I smoked cigarettes, used alcohol and various drugs to deal with social issues, sensory overload, severe anxiety and unresolved trauma. I worked as a nurse for 20 years traumatised by alarms, loud noises, smells, and fluorescent lights not knowing why they caused sensory overload and meltdowns.

I like to line things up and do not like it if people touch my things or move them. Lining things up for me is about identifying objects so lining them up helps me recognise patterns and see what they are. Routine is very important to me and if it does not go to plan, I become dysregulated which can sometimes lead to an autistic meltdown. I am vegan and like to eat the same things for my meals every day. I struggled badly as a child because I was made to eat meat and many foods I could not tolerate.

I did not like playing with toys as a child or was interested in dolls. I was mostly non verbal preschool-primary school, and would point or just nod my head instead. My father said I would get fixated on a word and keep repeating it and I often made up my own words for things. They said when I pointed to something it was not in the right direction or if they called my name I did not respond, and I had very little interest in playing with other children. My spouse says I still point in the wrong direction. and that when I se a pronoun like 'this' without saying first what this is.

It was hard to get me to school if everything was not right. For instance, if I got dirt on my clothing or my socks would not stay up and were uneven, or lunch was not how I liked it, I got anxious and would not walk out the door. I could not concentrate at school because of all the noise, lights, and various sensory issues. I always did much better at home when doing my homework without the distractions. I was often ridiculed by a schoolteacher who made me sit in front of the class with a book on my head, or to put my nose in a ring on the blackboard.

My school reports from primary and secondary school said - doesn't listen, lacks focus, uninterested, distracted, daydreaming, doesn't join in group activities, and likes to be on their own. I did not do anywhere as well as I could have in school because of undiagnosed autism. I failed a major nursing exam because sensory issues and anxiety. This test normally could not be repeated, but because of the kindness of my tutor who must of suspected I could have passed it easily, allowed me to sit it again for which I passed with flying colours.

I have always had an issue with eye contact and my parents could never get me to look at the camera when they were taking a picture of me. I would react to the camera flash and it would trigger a meltdown and sometimes a migraine. I tried to force myself to do eye contact for many years. However, when I forced myself to have eye contact, I would be accused of staring, so I ended up looking at people’s mouths instead. I expect this is how I learned to lip read.

I do not like small talk and wear earphones to block out noise and people who want to hijack me for small talk. I get alarmed easily if someone comes close to me unexpectantly and I am quite sensitive to noisy and crowded places. When communicating I need clear and direct communication to understand. I have spent most of my life being misunderstood, gaslighted, dismissed and not believed when I have reactions to light, noise, high pitched sounds, alarms, deep base music, perfume, and other smells.

I am socially anxious and a bit awkward, and have tried suppress my autistic traits my whole life to fit in. I do not make friends easily or keep friends for long. I would consider friends if they accepted me as my autistic self, but I decided it was best for my mental health not to have friendships anymore because that has not been my general experience.

I only wear the colours blue, black, grey, white, and I cut the tags off my clothes. I was made fun of a lot when I was young for my clumsiness. I could not tie my own shoelaces as a child and spent at least 10 minutes every morning before school trying to tie them, but they kept coming undone. I still must concentrate to tie them. I also drop things and have trouble with fine motor skills like pinching and gripping objects.

Having dyspraxia has had a significant effect on my life. Coordination between left and right sides of the body are difficult so I was always hopeless with skipping, hopping, or getting my legs to work on a swing. My posture perception is poor and I cannot stand on one leg without falling. I get dressed in front of the mirror and often must look at my feet when I am walking, so I do not trip over my own feet. I have broken several toes, both ankles, and knocked myself out for which one landed me in hospital with concussion. I get a lot of bruises and do not know how they happened.

Self regulating for me for me looks like rocking gently, patting my head or chest, pacing, finger twiddling, tracing objects with my fingers, counting and occasionally I will flap my hands. I pat my head and pace when experiencing sensory overload or do not understand something. I do not use stim toys as I have never been drawn to them.

I ask many questions when I do not understand something and if people raise their voices loudly at me in response, I will then sometimes pretend I got it to deal with their impatience. I get into trouble for the expressions on my face because they do not match what I am expressing. My spouse says I do things like smile when I am in pain or look annoyed when I am just trying to process information. I was sent out of the classroom at school for my facial expressions and became the comedy act entertainment for others who found my expressions amusing.

If someone interrupts me when I am speaking or doing a task, I will have difficulty remembering what I was doing. When I was given an instruction as a child, I would repeat it aloud until I had delivered the message and I still do it but in my head. Sometimes I have difficulty remembering what I have read, so when I transition to new information, I cannot see how it relates to what I have already read so have to re-read it a few times. However, I do experience intense focus, so I have good memory for detailed information.

I have difficulty with set switching because I get overfocused on what I am doing and find it difficult to shift my attention to the next task very easily. I am not very flexible with my routines either and have quite low tolerance for them being interrupted or changed. I have always struggled with when it is my turn to speak in a conversation. For this reason, I do not like being in groups so avoid them and prefer one on one. In groups I will be silent because I find it too difficult to work out when I can speak and it triggers my social anxiety.

The late diagnosed are the forgotten generation and with much more awareness these days we will thankfully see people being diagnosed much earlier. I would have liked to have known sooner than 63 years old but I am somewhat glad I was not diagnosed as a child because I would have likely been cast aside. I grew up in New Zealand in the 60s, and things were very different around autism understanding then.

Being officially diagnosed as autistic has made it easier for me to show my real self. Knowing I am autistic helped to lift a lifetime of shame for thinking something was wrong with me when I am just different. I still feel like it was little too late as I try to come to terms with more than 6 decades of trauma from society and family for being autisitc. I now accept healing from this is a work in progress and I may never get where I could have if I had discovered this much earlier and received the help and support I needed.