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Being human

by Devaki Sokaris

My story

This is a concise back story of my life. My name is Devaki Sokaris pronounced Deeva-key, So-car-ris. I am a philosopher, singer-songwriter, recluse, minimalist, vegan, non-binary and autistic.

I do not chase life or strive to become something important in the eyes of others or myself. I know I have my own path and follow only my own heart. I am unapologetically autistic and have social and general anxiety disorder, C-PTSD, demand avoidance, fibromyalgia, chronic fatigue, and IBS to name a few. My background is nursing, fitness and health, remedial massage, several healing therapies, and 25 years life mentoring others before retiring in 2020.

I am highly introverted and have always liked to spend most of my time on my own since childhood. I was often reminded by others that I didn’t fit into what they viewed as normal, and was made fun of and ridiculed for much of my childhood and adult life. My biggest challenge is living in a world that is very sensory triggering for me. As a result of decades of masking my autistic traits, in my retirement I choose to live mostly as reclusive life on my own terms trying to recover from the trauma it has caused.

I was born in Wanganui, New Zealand and grew up in a trauma based household with a mentally and physically abusive mother. I now see my family in a different light since discovering I am autistic. Statistically autistic children seem to have at least one autistic parent and often other relatives. I believe both my parents and sibling were neurodivergent which explains a lot about my family life, and why no one twigged I was autistic.

I knew when I was nine years old that I wanted to be a nurse when I left school, and I did just that for the first 20 years of my working life. I felt compassion for those who were sick and I wanted to help ease their suffering if I could. I faced an enormous amount of sensory issues and overload working in a hospital environment without ever knowing this was due to being autistic.

When I was 26 years old, I lived through 3 life changing challenges in the same year, and as a result I had a major breakdown and became suicidal. Through this process I went on to explore spirituality through many different non-religious philosophies. In 1984 I became a Buddhist for many years and later joined Siddha yoga for some years. I met my spiritual teacher who had a significant impact on my life before their passing in 2002. These days I am still spiritual but I do not belong to any organisation or spiritual group as I no longer want to.

I know for sure that if I hadn't embarked on a spiritual path I would have left this planet long ago. I still struggle from time to time with not wanting to be here but it is my sense of connection that anchors me to stay. I also understand the reason for a lot of my unexplained suffering since being diagnosed with autism in November 2022 at the age of 64. I am 65 now.

I first came to Australia in 1977. Many years later I moved back to New Zealand, and a few years later I moved back to Australia. I have lived in various Australian states and have resided in Canberra since 2017. During my return to New Zealand, I severely injured my back at work and sustained a cervical disc lesion which was to later end my 20-year nursing career. It was clear I would not be able to return to nursing, so I came back to Australia. In 1992, I was diagnosed with fibromyalgia which I still live with today. In 1994 at 36 years old I started my own life mentoring business.

In January 1999, three weeks before my 41st birthday, I met the person I would marry and we married in December 2000. I started playing guitar and writing songs in 2000 at the age of 42 and went on to record two albums. Music has always played a significant part in my life, and I came to understand that the right music can facilitate healing, and help open our hearts.

Autistic journey

In 2021 at the age of 63 years old and retired, the penny dropped after a light bulb moment that led me to discover that I am autistic.

I have always known I was different from most people I had been around all my life, so this came with relief and instantly made my whole life make sense. However, I went through a stage of grief that I am only discovering this now, and why didn't anyone see all the clues that were screaming autistic when I was growing up. At 65 I am still processing acceptance, and unmasking decades of masking my autistic traits. I still have a way to go before I feel more at peace, and not sure yet where this journey will take me.

Over the course of my life, I have seen GPS and psychologists only to be repeatedly diagnosed with anxiety and panic attacks. In 2021 I started doing my own extensive online research, I took many tests for autism, analysed my childhood and adult behaviour, documented what I remembered about my childhood, and what my parents told me about my behaviour growing up. There were so many alarm bells it escapes me how no one recognised I was autistic.

After this there was no doubt in my mind I was autistic, so I comfortably self diagnosed as autistic. In November 2022 at 64 years old I was officially diagnosed as autistic level 2, and social-general anxiety. I fully support self diagnosis and believe it is completely valid because many will never receive an official diagnosis for different reasons. For me having an official diagnosis helped to lift a lot of misplaced guilt and shame for thinking something was wrong with me.

I am not a thrill seeker and I tend to ponder on things for a long time before acting and making decisions. I don't drink alcohol or smoke cigarettes. However, from the age of 16 to 30 I smoked cigarettes, used drugs and alcohol to deal with unresolved trauma, social stress and sensory overload issues, burnout and severe anxiety which I now know is fuelled by trauma and being autistic.

I experience sensory overload easily and it debilitates me, so I need quite time away from things to recover. This was once mistaken for depression by a GP. I worked in hospitals for 20 years as a nurse dealing with alarms, loud noises, smells, and fluorescent lights and had no understanding why they caused sensory overload and meltdowns. Working as a nurse I felt empathy for people, but those feelings overwhelmed me and I didn’t know how to express empathy like other people, so I would take on my patients suffering and worry about them away from work.

Anxiety took away any real chance of a music career because I couldn’t do live gigs to promote my debut album even though it was said to do well by music industry people. I have spent most of my life trying to fit in by masking my autistic traits, which also involved rehearsing in front of a mirror to get facial expressions right, and social skills like neurotypical people. I now live a reclusive lifestyle and have stopped masking a lot of my autistic traits when in public, as all the decades of masking them has taken a huge toll on my mental health.

Routine is very important to me and if it doesn't go to plan, I become anxious, and stressed which can sometimes lead to a panic attack or an autistic meltdown. I am also a vegan and like to eat the same things for my meals every day. I struggled badly as a child because many foods I was given would upset my stomach or cause sensory issues. I was made to eat meat and many foods I could not tolerate, so every opportunity I had I would feed them to our dog under the table.

I was a sensitive, highly strung, nervy child. I have had anxiety and IBS since I was a child, and have incurred many food sensitivities, several bouts of tonsillitis, and strep throats right into my mid-twenties. I developed ulcerative colitis when I was 17, and had glandular fever with 2 relapses at 20 years old. When I was 27, I had a major breakdown and battled with suicidal thoughts. At his time I was diagnosed with anxiety and panic attacks. I know now this had much to do with being autistic and these conditions were co-occurring.

I like to line things up and don't like it if people touch my things or move them, and I have been like this since childhood. Lining things up for me is about identifying objects so lining them up helps me recognise patterns and see what they are. I didn't like playing with toys as a child or was interested in the dolls that were bought for me. I normally liked to play with things that weren't classed as toys, look at things from different angles and pull them apart to see how they were made.

I didn't speak much preschool or at primary school. According to my mother I would just sit on the floor, stare out the window and be content to do nothing, although she labelled it lazy. My parents said I would get fixated on one word and keep repeating it out aloud, and I also made up my own words for things. When I pointed to something it wasn't in the right direction so people didn't know what I was pointing at.

My spouse says I still point to things in the wrong direction. They also say, I say a pronoun like 'this' without saying first what this is. It confuses them and other's because they don't know what this is. My father said he would call my name and I often didn’t respond to it, and I had very little interest in playing with other children or joining in.

I couldn't concentrate at school because of all the noise around me, lights, and various sensory issues. I always did much better at home in the quite of my room when doing my homework, so I knew I could concentrate better without the sensory distractions. I was often sent out of the classroom or ridiculed by the teacher to sit in front of the class with a book on my head or was made to put my nose in a ring on the blackboard. That would trigger a panic attack, for which I was sent outside to get over without any support.

My school reports from primary and secondary school said - doesn't listen, apply themselves, pay attention, lacks focus, uninterested, distracted, daydreaming, doesn't join in group activities, and likes to be on their own. I was labelled rebellious, shy, and too sensitive. I threw my school reports and photos out some years ago. If I had known I was autistic then I would not have thrown them out, as they may have come in handy for an autism assessment, but as it turned out I did fine without them.

I did not do anywhere as well as I could have in school because of undiagnosed autism. If I had been given accommodations it would have been a different story. I failed a major nursing exam because of my anxiety and not being able to concentrate around a lot of people. This test normally couldn't 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 on my own and I passed it 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 always looked like I was somewhere else in the photographs. I would react to the camera flash and it would trigger a meltdown and often a migraine. It was hard to get me to school some mornings as if everything wasn't right, I would not cooperate. For instance, if I go dirt on my clothing or my socks wouldn't stay up, shoelaces weren't tied properly, or my lunch wasn't how I wanted it I got anxious and wouldn't walk out the door.

I don't 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, perfume, and other smells. I only wear the colours blue, black, grey, and white, seamless garments and cut the tags off my clothes.

I have always had trouble with my motor skills and have mostly been clumsy, physically awkward, and uncoordinated my whole life. I couldn’t 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.

I sometimes trip over my own feet and have broken toes, both legs and have suffered concussion from two head injuries. I get a lot of bruises and don't know how they happened. 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.

Stimming for me looks like rocking gently, patting my head or chest, pacing, blocking my ears, finger twiddling, tracing objects with my fingers, counting and sometimes I will flap my hands. I pat my head and pace when experiencing sensory overload or do not understand something. I don't use or buy traditional stim toys but find playing with a palm stone calming. I used to supress stimming a lot when in public, but now I don't mask much now, because decades of masking has taken a huge toll on my mental and physical wellbeing.

I ask many questions when I don't 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 don't 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've read, so when I transition to new information, I can't 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 can't 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 don’t like being in groups so avoid them and prefer one on one or with no more than two people, and one of them would have to be someone who knew me well. 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. I also didn't realise until 2022 I spoke in a somewhat monotone voice until another autistic person pointed it out, along with me taking everything literally.

I am socially anxious and a bit awkward, and have masked my autistic traits my whole life to fit in. I don't 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. However, I would like to connect with elder autistic people who understand what it’s like to discover being autistic this late in life, but I have not connected with any to date.

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’m glad I wasn’t diagnosed as a child because I grew up in New Zealand in the 60s, and things were very different around autism awareness then. I would have likely been cast aside so I’m a little glad no one twigged so its bitter sweet.

I have spent a lifetime thinking I was dropped off on the wrong planet, so being officially diagnosed with autism has made it easier for me to unmask decades of masking my autistic traits. Knowing I am autistic has helped to lift a lifetime of guilt and shame for thinking something was wrong with me. Diagnosis doesn’t fix everything, it’s not meant to, but it certainly brings clarity and understanding of the life lived.

Music journey

Growing up in New Zealand, it was common to go to parties where someone would have a guitar, and voice to sing along with. People used to tell me I had a good voice, which I never took much notice of.

I started singing, writing lyrics, and playing guitar in 2000 at the age of 42. I play finger style-rhythm guitar, and over the years I have developed my own finger style weaved with rhythm.

For much of my music journey I have chosen to to create music in isolation of the influence of other musicians. However, I am sure the music I listened to growing up has influenced or shaped me in some way to the artist I became. I feel this will be the experience of many musicians. What I have taken from that experience has created my own style rather than being defined by sounding like other artists I like.

My father bought me a guitar when I was 9 years old. I only took interest in it for a couple of months, so it ended up being something he played. When my brother was visiting me in Australia, they bought themselves a guitar, and on returning to New Zealand decided to leave it with me. It ended up in a cupboard only to be thrown out several years later, as the neck had warped badly beyond repair.

In 2000 the year I got married, my spouse heard me singing, and said I did not know you could sing, I thought ‘here we go again’. I let them persuade me to buy a guitar. It also was not until then I found out they could mix and master music.

In 2002 we moved from Daylesford to Melbourne where I began to write songs for my love is album. We started to record the songs for the album 2003. I hired some session musicians to accompany my songs. Patanjali recorded my voice and mixed and mastered the album. It was released into music stores in 2004.

In 2006 we moved to Sydney. In 2012 Patanjali became interested in playing guitar and later went on to playing mandolin, and bass guitar. We then decided to form a folk duo called DevaKnighT, where I continued to write the lyrics and music. In 2013 Patanjali began to build a soundproof recording studio in our lounge room. In 2013 we recorded 4 studio quality recordings with video which was challenging, as we did the video at the same time as the studio recording.

For financial reasons in 2016 we pulled down the recording studio and sold all the musical and recording equipment. I had to sell my Taylor and Takamine guitars. I bought a cheaper Taylor guitar, so I could continue to write. In 2017 we moved to Canberra, In 2019 we decided to pull the DevaKnight label. I now write and create music in private and feel this to be the end of my outward focus thus music is now a hobby. Of course, all music I have recorded is still available for download on most streaming sites.

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