Sections within this post
- Introduction
- What now?
- The first person I told
- The next person I told
- Telling other people in the family
- Telling my employer
- Telling the wider world
- Conclusion
- What’s next?
For my first ever series of blog posts, it made sense to start from where it all began - with autism being a lifelong and present condition and all. I was diagnosed as an adult, into my third decade - so what was life like leading up to the diagnosis moment? What signs were present without me or anybody else knowing or noticing?
What now?
Right after the confirmation call of being diagnosed with Autism Spectrum Disorder (Condition), I stared into space and gave it a few minutes or so to let it all sink in. I was drained from the phone call (as I always am) but this one in particular had a lot of weight to it. Life-altering, in fact.
I was home-alone on receiving the call, and had nobody around to immediately grab and sound off to - that meant outgoing phone calls were in order. That was the thing, however - who was I going to tell first, and who was I going to tell at all?
The first person I told
…was my mum. As someone completely avoidant of phone calls, it is very rare I call anybody, unless it is an emergency or I need their attention immediately. Anything else can be dealt with as a text message of some sort. For this call, I even put the camera on.
Over time, I had discussed my seeking of diagnosis regularly with my parents, and so the news was not completely out of the blue - obviously, there is the shock of your 30-year-old only child (daughter) suddenly coming at you with completely new information about herself, when as a parent, you thought you knew pretty much everything about your child (in my case specifically, as it is not uncommon for only children to have a particularly close bond with parents, due to lack of sibling competition).
However, despite this new information, my mum was fully supportive (and still is). As of my own doing, we went in circles during the phone call, probably because I was still rattled from the shock of the news and so seeking reassurance that “it changes nothing” and “it is now a better understanding of everything we have been through”.
Living away from my parents, I asked my mum to pass the news on to my dad. As mentioned in some of my previous posts, despite him having no desire to seek a diagnosis, I am suspicious of my dad being on the spectrum too. I would not push for him seeking a diagnosis as that is his own choice (and that is true of anyone who is considering it). However, as I was not there for him finding out, I am sure his response would have been similar to my mum’s, and pause for thought given his similar personality traits to me.
The next person I told
…was my husband. As we both have jobs, I had to pin down my husband when he had the opportunity to speak on the phone (as I had found out during our typical work hours). After texting him asking to call me as soon as he could, my husband was pretty certain of what the call was about before he dialled, as, much like my mum, we had had constant discussions about my potential autism for some time (especially as he was the victim of my constant infodumping about autism and source of reassurance that I should not be too invested the potential diagnosis too much in case I am not actually autistic).
He called me whilst walking home from his work and it was the same sort of reaction as my mum - dishing out of support, no surprise as it was a long time coming, pretty much the outcome we hoped for and expected and a sense of relief. The waiting was finally all over and done with, and we could focus forward on living with the news and what it meant for both of us.
Telling other people in the family
The three people I was guaranteed to tell were told - but who else was going to know? I still struggle with this aspect today, as oftentimes it feels like I am exposing myself too much when I ‘reveal’ the information (but do feel more at ease about it than I did at first).
I asked my mum to tell her sisters, as their children consist of one confirmed autism diagnosis and one suspected. That way, there was an olive branch of support from both my mum as a sister, and me as a cousin, on the matter of autism. What I find interesting from that is the presence of autism is more common on my maternal side than paternal, yet my dad is the one out of my parents with more prominent traits.
After that, I was really unsure who else to tell, so I kept things under wraps for a bit. Over time, the number of people I have told has increased gradually and it has become a bit of an ‘open secret’ - by that, I mean there are some members of my family (including in-laws) that know about it like it is common knowledge, but others that have not got a clue, even over two years after the diagnosis. This is obviously going to come back and haunt me one day, as it is bound to be let slip by somebody who knows - but I have never directly told some family members about my autism because I feel like they will be the polar opposite of understanding and give me the whole “you don’t look autistic” spiel.
Telling my employer
As a disclaimer for this entire blog, I am here to share lived experiences and so any advice shared is from exactly that, and not from professional or health expertise. However, it is a common concern amongst autistic people who are in a place of work (which is a low percentage given it is one of many non-autistic-friendly environments for many reasons) whether they should disclose their autism to their employer / fellow employees or not.
For me, it became a no-brainer. At the time of my diagnosis, we were slowly coming out of the pandemic that began in 2020. As mentioned in previous posts, the pandemic was a blessing in some ways, with a big plus side being that I (amongst others) was forced into working from home long-term to protect the wider world from an unknown and life-threatening virus. As time went on and I was spending more and more time at home for work, in a controlled, safe environment with minimal overstimulating factors at play, going back to the office felt like the last thing I wanted to do. My productivity soared at home, there was no horrific motorway commute anymore, and my new-found work-life balance was really helping my mental health over all.
As we (across the world, not just localised to me) started to climb out of the pandemic, and people were starting to get ‘back into the office’ and the attitude of ‘hybrid working’ started to vary amongst different employers, I was desperate to protect this ’luxury’ I had come to experience. There were too many positives for me working from home full-time compared to going into an office every day / a few days a week for it to be whisked away now the pandemic restrictions were easing (and employers wanted to make the most of the expensive office / physical business infrastructure they had by getting employees back in them). To protect this, I knew I had to disclose my autism diagnosis formally at work.
I firstly told my direct manager, who was aware of my seeking diagnosis. I told them I was seeking it initially rather than just after being diagnosed, as the diagnostic process would have meant potentially taking time out of work to attend any appointments that came up out of nowhere (as wait times are so lengthy, you have to take any appointments you can get). After sharing my diagnosis, I was signposted towards how to make this a formality on my employment record, should I choose to do so (or keep it as informal knowledge with my manager / team). I gave it a couple of weeks for time to think, and then came to the conclusion that I was going to put it on my records. Again, this was to help protect my ability to work from home full-time, as a reasonable adjustment for my disability (not all autistic folk will see autism as a disability, but in most aspects of work life, for me it is disabling).
I am actively part of staff networks (focussed groups where staff with a common characteristic come together for mutual support and discussion) surrounding neurodiversity and disability, which helps me feel less alone and guilty in my need for additional support and accommodations at work. I share my autism diagnosis discretely in my work ‘about me’ page too, as well as my communication preferences.
I am incredibly lucky and grateful of being ‘out’ about my autism at work - it has increased my satisfaction and productivity ten-fold.
Telling the wider world
A few months after diagnosis, I purchased a Sunflower Lanyard, as a public display of my hidden disability. I very rarely wear it, but find it is useful to have in case of a scenario where I am guaranteed to struggle - such as attending big events or crowded, busy areas. Again, the irony that I have worn this when some of my family don’t even know of my diagnosis(!).
I have joined a couple of in-person clubs associated with my special interests, in order to feel less lonely and meet others with the same interests. Having that common ground, I have learned, is a good icebreaker and puts me at some ease in talking to new people as we have at least have something in common to talk about, before sharing other sentiments about ourselves. In joining these clubs, I have shared my autism diagnosis with the club leaders as then, if my ‘vibes’ are ever ‘off’ or ‘strange’, then at least the club leader can explain why on my behalf. I do struggle to attend these clubs actively, as my social anxiety gets the better of me most times and I back out of attending them minutes before the clubs start. I then feel terribly guilty afterwards so I can never win.
In meeting new people, I do not tend to share my diagnosis right away, unless I feel comfortable to do so or it feels relevant to the conversation. In relation to the clubs above, there were occasions where other members started to discuss their neurodiversity, and so I was able to chime in and share my autism diagnosis at that point.
Conclusion
This blog post has been an interesting one to write because it mixes the past and present of my autism diagnosis ‘journey’. It concludes my life story in the guise of autism diagnosis, from signs in early childhood, right up to current day where my crippling social anxiety still cannot be completely reined in by my sertraline prescription…
What’s next?
Where does the blog go from here? We will soon find out - maybe it is time to mix things up a bit and make posts in the other categories over here!
Thank you very much for reading this blog post. I appreciate you spending time here on my corner of the internet. Hopefully you got something out of reading the essay above.
Stay tuned for upcoming posts and be the first to read them by following me on the social media links, in the menu bar, to know exactly when new posts are published.
Until next time,
