On the journey to self diagnosis.
Greetings, reader, and welcome. As I write this it is July of 2022 and I have been self-diagnosed as Autistic for a little over one year, while awaiting an official assessment. I’ll be 36 this year, so I’m going to tentatively assume that I will be classed as ‘Late Diagnosed’ – if the doctors eventually agree with me.
In time I hope to share how having Autism affects my day to day life by delving into my various signs, symptoms, and traits, and their effects. This may have to wait a couple months while my motivation cycles back around to writing. In any case, I first want to give you a brief insight into my Autism diagnosis journey so far.
Just like everyone else with Autism, my journey began at birth. In the interests of brevity I will skip over the many, many, years in which my condition was overlooked by teachers, doctors, and at least one actual psychiatrist. Suffice to say I went to school in the early 90’s, and quietly got on with it – with a reasonable degree of academic success – so there was no real reason for my schools to dig any deeper into any symptoms or behaviours which might have pointed towards Autism.
In fact, I don’t recall there being any diagnosed kids in my year at primary school. I think it’s a safe bet that there must have been at least a few unknowing sufferers alongside myself. There are at least 4 children in my son’s class with known additional needs, which shows how far we’ve come (in the intervening 30 years) and how much better we are at noticing and actually supporting children with Autism and additional needs. My parents actually came the closest to figuring something out (while I was still a youngun, workin’ down t’pits in Lancashire). They brought up a concern about my lack of emotional response to death in the family with our GP, and I was referred to the aforementioned psychologist (and as such it came to nothing). So close.
The problem with diagnosing mental health is that you can’t just take a look at it, or put it under an x-ray and see what’s broken. In the first instance you have to use the very thing you suspect of not working correctly to try and figure out in what way it isn’t working. It’s like using a ruler to measure itself, only you’re pretty sure the ruler was made wrong in the first place and isn’t entirely accurate. My point being, I’ve been trying to unravel the inner workings of my mental health since about 2014, or 8 years ago. That was when I first went to hospital with chest pains, got hooked up to the ECG and was told I was physically fine – but could it possibly be anxiety?
This was the first step on my mental health / mental illness pathway, a detectable sign of an underlying disorder as yet unknown. For the next 6 or so years I didn’t do a great deal to improve the situation. Those 6 years saw us moving to a new home on the other side of the country, and consequently swapping to a new job. Exactly the kind of massive life changes that can be highly disruptive to an Autistic person. But in ignorance of my own condition I struggled through whilst being carried forward by inertia, went on some courses around stress management and basically “managed” / lived with the symptoms every day. Then, in 2020, Covid hit here in the UK and kind of shook things up a bit.
By the end of summer 2020 I was struggling to adjust to being at home all the time.The fact that I was struggling with the unpredictable and changing nature of the covid situation, and unexpectedly changing my situation to being in a confined environment (during lockdown) with 3 other people may have been a not so subtle hint. But we missed it at the time. I convinced myself I had depression, went back to the doc’s on that premise, and after a brief phone call (this was still covid times, so no face to face) they agreed and gave me some meds to try.
With hindsight this was a short side step off the path to diagnosis, and it’s not a great surprise that I didn’t get it right the first time. The similarity and overlap in signs & symptoms between conditions such as Depression, Autism, and ADHD make confusion and misdiagnosis all the more likely, and only make getting to the right answer even more difficult.
I’m still taking antidepressants in a moderate dose even after pursuing an alternative diagnosis because they have been very effective against my everyday anxiety symptoms. However, the medication failed to touch some of the other symptoms I went in with initially and that left me with enough of a doubt to be open to something else. The fact I was no longer having to deal with the constant noise of anxious thoughts, and feelings of unsubstantiated dread must have freed up a few brain cells to do some actual thinking…
Remember how Autism is thought to be hereditary? Well, around the end of 2020 our son was preliminarily diagnosed with Autism, given his own referral, and in summer 2021 was officially diagnosed with Autism. Over the months that it took to get my son referred, and to finally get the diagnosis back, the similarities between us kept coming up time and again in various observations and reports made as part of the diagnosis process. Looking back to my own childhood and school years the behaviours I was often being chastised for at the time were being echoed back to me about my son. As the similarities began to pile up it soon became obvious this was more than mere coincidence, going beyond the kind of natural similarity you’d expect of a parent and their child. The similarities were over and above normal personality traits, and in so many cases extended into behaviours that were specifically associated with his autism.
By the time the paediatrician’s final report came back I was already reasonably sure that the previous diagnosis of depression was incorrect, and that it was in fact Autism. I finally felt I was on the right track, at last. Having done a large amount of reading and research around the subject, ticking off the traits that matched my lived experiences, and comparing my scant memories of childhood with the way our son behaves, I was finally ready to seek out diagnosis and get that same confirmation for myself.
Once I finally decided to pursue a formal diagnosis, I contacted my GP with a lengthy list of my perceived Autism traits. My early research efforts, before I knew very much about Autism at all, were all based on looking up common traits and comparing these to myself. I collected a selection of lists of autism traits from a variety of sources and went through them with a highlighter marking up everything I thought applied to me. The sea of fluorescent green paper I found myself surrounded by boosted my confidence in my Autism theory.
Based on my assorted traits I was referred for an adult assessment, and a few days later was scheduled for an initial assessment – which consisted of a hour’s conversation on the phone. The assessor at this stage was clearly satisfied that there was merit to continuing as I was further referred to be placed on the waiting list for a full adult assessment.
For myself here in England the referral process was very simple, and (due to covid) was all online or over the phone. At the time I was referred the waiting list was quoted as being 18 months – down from 24 in the depths of Covid when personnel were reassigned to deal with the pandemic – so I am hoping to be seen around Christmas this year.
Which brings us back up to the present and I’m just busily waiting for my assessment to come around. In my initial interview I was told that keeping a record of anything I notice in my behaviour which could be autism related would be useful. Being (allegedly) autistic I just love to collect information so the list is extensive! I even found my old school reports, which I will eventually find time to parse and extract the useful quotes from. The first time I tried to read through them I was overcome with a sense of disappointment at having been let down by the system, but I will go back to them in time and write up anything useful. I’ve also spent time talking to the other parents of autistic children around us, and other actually autistic people (in some cases they are one and the same, much like myself) and the feelings of relatability and of belonging in the autism community which have come from these discussions have only strengthened my belief that I now have the correct self-diagnosis in Autism. I have essentially been living the past 12 months or so as if I am Autistic, embracing my traits and trying not to habitually conceal them in day to day life (i.e. ‘unmasking’, as it’s known). After the better part of 34 years spent trying to fit in in the weird world around me, discovering who the real me is underneath the disguise is a whole process all of its own.
So that’s how I came to be where I am today, and I’m looking forward to sharing more about how Autism has affected myself and my life in the future. Thanks for reading, and ta-ra for now!