Autism assessment
This article is an how I prepared for my autism assessment. It may help someone who is wanting to go down that path and wants to do all they can to get the right diagnosis.
In 2021, at age 63, I had an epiphany that led to the realisation I am autistic. It was important to me to be assessed for autism, so I spent a year researching autism extensively and compiled a detailed report based on online tests, my childhood and adult behaviour, and my parents, spouses and own insights about how I presented. In November 2022, at 64, I was officially diagnosed with Autism Level 2, social and 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.
The late-diagnosed generation has often been overlooked, but with growing awareness, future generations will benefit from earlier diagnoses. I wish I had known sooner, but I'm also grateful not to have been diagnosed as a child. Growing up in New Zealand in the 60s, autism was not well understood, and I may have been marginalised.
Being diagnosed has allowed me to accept and be my true self, easing the lifetime of shame I felt for being different. Still, it feels bittersweet, as I process the trauma accumulated over decades from society and family. Healing is a work in progress, and I accept that it may never be as complete as it could have been with earlier support.
Report for autism assessment△
As a child, I was sensitive, anxious, and frequently ill with IBS, food sensitivities, and tonsillitis.
I have spent most of my life trying to suppress my autistic traits. Sensory overload has always been debilitating, and from my teens to early 30s, I smoked cigarettes, used alcohol and drugs to cope with social anxiety and unresolved trauma. I worked as a nurse for 20 years, constantly overwhelmed by loud noises, smells, and fluorescent lights, unaware that these sensory issues were linked to autism. At 27, I suffered a major breakdown and battled with ongoing suicidal ideation. I now recognise that autism and trauma played a big part in fuelling these struggles.
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 often 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 say 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.
Being socially anxious and awkward, I’ve tried to suppress my autistic traits, making it hard to maintain friendships. I’ve learned it’s better for my mental health not to pursue friendships, as I’ve often been rejected for being my real self. In social settings, I find it difficult to know when to speak, which triggers social anxiety. As a result, I avoid group settings and prefer one-on-one interactions.
I wear only blue, black, grey, and white clothes and always cut the tags off clothing. I struggled with clumsiness as a child and couldn’t tie my shoes without difficulty. I still concentrate to tie them properly and often drop things or have trouble with fine motor skills like pinching and gripping objects.
Dyspraxia has had a significant impact on my life, making coordination difficult. Activities like skipping, hopping, or standing on one leg are challenging. I often need to look at my feet to avoid tripping, and I’ve broken several bones due to poor coordination and suffered concussion on a couple of occasions. I also get a lot of bruises and do not know how they happened.
I experience often debilitating sensory issues around visual clutter as it creates a lot of sensory noise for me. I may throw out things impulsively because if I don’t know what to do with them I need to remove them. I have tried packing things in a box but then I worry about what to do with them in the long run. This is a long process and eventually I just throw them out or give them away. I feel calmer in a very zen environment without pictures on the walls, ornaments and minimal possessions. I am always looking to simplify as I still feel I have too many things causing me stress and anxiety.
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 often ask questions when I don’t understand something, but if people respond impatiently, I may pretend to understand. I’ve struggled with facial expressions, often misunderstood or laughed at for my lack of alignment between expression and feeling. I was sent out of class for this in school, where I became the subject of jokes. Interruptions also confuse me, and I have trouble recalling what I was doing if interrupted. Repetition helps me remember instructions, but I still find it hard to switch tasks and struggle with flexibility in routines.