Piecing it all together: The Story of a Late-Diagnosed Autistic Woman in Engineering
Hiding in Plain Sight
The Story of a Late-Diagnosed Autistic Woman in Engineering with a Side Portion of Burnout
Last summer, I was formally diagnosed as autistic. I was 45, and, until 2 months prior to my formal diagnosis, despite autism being my special interest for over 20 years, I firmly believed I was a (slightly broken) neurotypical person.
It has taken me almost a year to write this article. There are a few reasons for that:
So, why am I writing this article now?
This last point is a great example of a vicious circle. Many autistic people don’t feel comfortable talking about being autistic and how it impacts their life for fear of negative consequences due to the abundance of misinformation out there about autism. The less autistic people write and talk about their lived experiences from the autistic perspective, the more misinformation there is in mainstream autism-related material, and the less autistic people will feel comfortable talking and writing about their experiences.
And so the cycle continues. The circle doesn’t get any less vicious without enough relentlessly determined autistic voices speaking up to drown out the allistic voices. I can mope around and feel sad about that, or I can play my part to amplify the autistic voices. I choose the latter, and if doing so helps just one other autistic person — directly or indirectly — then it is well worth any associated personal risk.
I encourage you to take a moment to think about the irony of non-autistic people writing and talking about autism.
As I approach my first Autism Awareness Month (in April) as a diagnosed autistic person, as opposed to (what I thought to be) an ally and advocate, it feels more important than ever to talk as openly as I can about my own autistic experience.
Before you read on, I encourage you to take a moment to think about the irony of non-autistic people writing and talking about autism.
Can you imagine learning about what it is like to be black from a white person? Or what it is like to be gay from a straight person? Or what it is like to be blind from a fully sighted person? Can you understand then how unfathomable it is to the autistic community that anyone other than an autistic person would classify themselves as an autism subject-matter expert?
So, here goes. This is autism from?my?experience (which will be different to every other autistic person’s experience).
It’s hard to know where to start, so let me start at the beginning.
Growing up, I had a fairly normal childhood and consider myself pretty lucky with the privileges I have been afforded. I had two hard-working parents who gave me and my brother everything we needed and a lot of what we wanted. I went to a reasonably good school, and I worked hard. From the outside in, it looked like a normal, happy and healthy childhood.
I made friends relatively easily, I enjoyed learning new things at school and did well academically in pretty much all the subjects, and I loved team sports. I have a lot of fond memories from my childhood, and of school particularly. Overall I would say I was a serious but happy child.
I felt relatively ‘normal’ except for one thing. I was tired. Really tired. All. The. Time.
I grew up in the 80s. Neurodivergence just wasn’t a topic many people knew about at the time, and what little information?was?available was almost exclusively written by neurotypical people based on limited research on (mostly) white boys. Following which, the (still largely outdated) DSM (Diagnostic and Statistical Manual of Mental Disorders) in the US, and ICD (International Classification of Diseases) in the UK went on to form diagnostic criteria to classify the beautifully brilliant and fantastically varied neurodivergent mind as a mental health disorder, syndrome and/or condition.
And this is the beginnings of the story of how the commonly held image of an autistic person formed — a young white boy who:
I didn’t fit the bill. Not even close. The idea that I might have been autistic when I was growing up didn’t enter the stratosphere of my thinking or beliefs. I felt relatively ‘normal’ except for one thing. I was tired. Really tired. All. The. Time.
Looking back, with the knowledge I have now, it was glaringly obvious I was autistic. But I’ll come back to that.
I survived junior and secondary school relatively unscathed. The patterns of high achievement followed by burnout and ever present background tiredness continued throughout my childhood and teens and by early adulthood, I had started a multi-year exploration with various doctors and psychologists attempting to get to the bottom of the tiredness, and get answers to a lot of unanswered questions. I accrued an eclectic assortment of misdiagnoses over those many years of exploration (glandular fever, chronic fatigue syndrome, ME, food allergies, anxiety, depression) — none of which made sense or answered many of the questions I still had.
And so I buried the persistent feelings of tiredness as best I could and stiff upper-lipped my way into fully fledged adulthood, awkwardly navigating life through a few years of eating disorders, using various coping mechanisms at large (and small) social gatherings to appear ‘normal’, and sleeping aids to switch off my overactive brain at night. I accidentally picked up quite a collection of coping and self-regulation techniques with little to no guidance and carried with me a buried but perpetual sense of feeling pretty alone.
By adulthood, I had found a number of kindred spirits who became close friends (most of which turned out to be neurodivergent). I wasn’t part of a wide social circle. Most of my friends didn’t know each other and I had always had a heavy preference for one-to-one socialising over group gatherings so I tended to focus on seeing one friend at a time and fudged my way through larger social gatherings and small talk accompanied by a side of gin, and followed by an unwelcome dessert of burnout. I unconsciously masked the holy heck out of life, and it was kind of working. Apart from that bloody burnout.
As the frivolities of university came to end, it was time to get a real job and find a suitable profession. I had absolutely no idea what I wanted to do as a career growing up. I studied Linguistics at university because I enjoyed it, and that seemed more important than studying something ‘useful’. This is where I first came across the topic of autism (outside of my love for the film ‘Rain Man’) and became so fascinated by it that I wrote my final year thesis on how autism affects communication — a paper based on the misinformation that was available to me at that time that I would absolutely burn if I hadn’t already misplaced it.
After a brief existential crisis — following the realisation that having a degree in Linguistics wouldn’t actually help me get a job — my father (who is sadly no longer with us and who I am 100% convinced I inherited being autistic from) happened to know someone who worked in the speech recognition department at the research and development laboratory at IBM and persuaded them to give me my first proper job. By chance rather than by design, I was offered my first taste of a career in software engineering.
I vividly remember arriving at the countryside IBM campus near Winchester — a unique microcosm of brilliantly weird and exceptionally smart humans. I don’t remember if I ever saw another woman during my tenure there — I don’t think so — and was surrounded by a large, sometimes sweaty, almost always bearded, mostly open-toed, group of older men who epitomised the stereotype of ‘Software Engineer’ more wholesomely than any group of individuals I have met since. I fell completely in love with this breed of humans and, despite the obvious outward differences, I felt very much at home. I knew from that moment I wanted to embark on a career in software engineering, and despite never learning to code (unless I can disguise SQL and some pretty mean Excel formula skills as code, which I’d never get away with), I have managed to make a reasonable success of a career in software engineering.
Fast forward to last summer. My passion for and interest in autism and all things neurodivergence-related never waned, but how I approached my insatiable need for information about autism?had?significantly changed since the arrival of my son a little over eleven years ago. It was clear he was autistic from a young age and, like any parent, I needed to do everything I could to understand him as best I could. At this point, I started reading?only?content created by autistic people, and so began the journey of unlearning almost everything I thought I knew about autism and neurodivergence.
The more I read, the deeper I became embedded in the autistic community, and the more the experiences of autistic people resonated with me. I lurked quietly observing in a number of online autistic community groups as a neurotypical imposter, often resisting the overwhelming urge to join in the conversation, and then one day, somebody posted about an autism event focused on supporting autistic children which was taking place in a town about an hour away that happened to coincide with a brief hiatus from work in between two jobs. I bought a ticket, and off I went with absolutely no comprehension or expectation of what was about to be one of the most significant and life-changing events of my life.
I walked nervously into the small, cosy and unfamiliar community hall the event was being held in, somewhat prepared to awkwardly wing my way through the necessities of small talk, and yet was pleasantly surprised to find myself in the comfort of a room full of equally nervous and awkward individuals, who were happy to be in each other’s presence without the need to talk to each other.
This is nice.
As the event unfolded, I found common ground with a number of the other attendees, many of whom were autistic women, and during one of the talks, a well-known celebrity shared the story of her late autism and ADHD diagnosis at the age of 50, and I found myself overwhelmed with emotion in a moment of absolute clarity and realisation that I myself was also autistic. This was the moment the penny dropped and everything, literally everything, finally started to make sense.
In the weeks and months that followed, as most late-diagnosed neurodivergent people do, I replayed my life through a new lens, which, as I mentioned, was accompanied by a rollercoaster of emotions — both good and bad. I felt compelled to undertake a formal diagnosis, which I paid for privately to shortcut the several-year waiting list on the NHS. It felt necessary to validate this new realisation and self-diagnosis. Honestly, I thought no one would ever believe I was autistic due to the stereotypical representations of and myths associated with autistic people in society.
If I fitted the stereotypical profile of an autistic person, I wouldn’t have gone 45 years undiagnosed.
Enough with the anecdotes. I felt it was important to share how I got here. But now that I have, I want to focus on what?my?autistic experience is like and how it permeates through everything I do and everything I experience. I also want to cast some light on some of the lesser-known autistic traits as I experience them because if I fitted the stereotypical profile of an autistic person, I wouldn’t have gone 45 years undiagnosed.
Now, back to that childhood. Below are the main ingredients that make up my autistic experience as an undiagnosed child and as a late-diagnosed adult. Most autistic traits (but not all) come with both positive and negative consequences so I’d like to talk about both and try to shift the narrative away from autism being thought of as a disorder, condition or syndrome and towards what it really is — a different and atypical brain type with advantages and disadvantages.
A cycle of hyperfocus and burnout
Of all of the ingredients, the hyperfocus/burnout cycle is probably the most impactful. Autistic people have a tendency to?hyperfocus ?on tasks, particularly when they have a keen interest in the activity. Hyperfocus is a total absorption in an activity — often remaining in deep focus for several hours without a break. Not only do I have an ability to hyperfocus, I have an inability to?stop?hyperfocusing in certain situations.
There are enormous benefits to hyperfocusing — I can achieve an awful lot in a short amount of time, and I’m a reliable task finisher, but, inevitably, it leads to burnout if I can’t recuperate appropriately after a period of hyperfocus (which can be challenging to do both as a parent and in the workplace).
As I referenced in the introduction, the hyperfocus/burnout cycle can also lead to inertia (avoiding starting a task) because of my?inability to stop hyperfocusing on a task (or leave it unfinished).
An overwhelming need for order and structure
I have always organised everything by groups and categories. Books, toys, sweets. Everything. I was unable to really enjoy eating sweets unless I could organise them by colour and size (which I could get away with as a child — not so much now).
As an adult, I still need a certain level of structure and organisation to feel comfortable and do my best thinking, and can feel incredibly dysregulated in cluttered and disorganised environments. I have occasionally been known to unconsciously organise other people’s belongings in the workplace or even in their homes into aesthetically pleasing arrangements — which, naturally, I’m mortified about when I catch myself doing it (or am caught in the act mid-reorganisation).
This need for structure means I am especially organised, both in my own work and that of my team. Adversely, it also means I have to work pretty hard to temper my need for structure and order in particularly unstructured and chaotic environments that are either not in my control or need to be that way.
An extreme sensitivity to sound
I have always been hyper sensitive to sound. As a child, I was unable to concentrate at school without the use of ear plugs to block out the noises that everyone else seemed to be able to filter out. I bought my first set of ear plugs around age 11 and developed an early dependence on them any time I needed to concentrate and to be able to sleep at night.
As an adult, my sensitivity to noise continues to be one of the most impactful elements of my autistic experience on a day-to-day basis. I hear everything with equal priority and someone tapping a keyboard several desk banks away is as loud to me as someone talking directly to me. This not only makes it difficult to focus, it can also be extremely overwhelming. It also makes it difficult to process and digest information effectively ‘live’ (in the moment) and in the presence of others.
Commuting to and from, and working in an office, is a ten hour plus assault on my senses, and can be both unproductive and incredibly draining. As you can imagine, the rise of remote working has been game changing for me.
This inability to filter out certain sounds also has an impact at social gatherings (particularly large ones) and can be immensely draining as I hear all of the conversations, the background music, the passing traffic, the clink of glasses, the dog barking outside etc. equally. The focus and energy I need to expend in order to maintain the conversation I’m in is another of the factors that feeds into burnout.
There are a couple of positive side effects of being hyper-sensitive to sound and hearing everything with equal priority. Firstly, I have a deep appreciation of music and can recreate all of the parts that make up a song after just one listen. Secondly, I now consider myself one of the world’s most knowledgeable experts on ear plug brands, both on their effectiveness in, and suitability for different situations! That’s got to count for something, right?
An overwhelming need for truth and justice
As a child, I found it very difficult to move past injustices — such as being told off for something I didn’t do (or observing someone else being told off for something they didn’t do). I want to be clear, this isn’t about accountability. I make mistakes and I am comfortable owning them, this is very specifically about the truth.
Throughout my life, situations in which there have been injustices, false narratives, little white lies, big whopping dirty lies, and really any deviation from the truth can sit with me for days, weeks, and sometimes until I remove myself from a situation entirely. I can somewhat temper the intensity of my outward reactions after a lifetime of practice, but I can’t stop the internalised feeling of my world being knocked off its axis.
This need for truth and justice makes me an excellent ally and supporter for others suffering at the hands of untruths, but it can disproportionately affect my own wellbeing, and it also means I can be very direct, which it turns out not everyone likes.
Hyper empathy
One of the most prolific myths about autistic people is that we lack empathy. In fact, it is quite the opposite — most autistic people are highly empathetic and feel other people’s feelings (good and bad) so profoundly and overwhelmingly that it can cause us to shut down or withdraw as a coping mechanism, thus appearing to lack empathy.
As a child and adult, my ability to be hyper empathetic has meant I am a great organiser of events and activities — able to quickly and effortlessly put myself in the position of all attendees or participants and leave no experience unconsidered. It also makes me a pretty excellent gift-buyer!
In the workplace, this ability to be hyper empathetic means I am always thinking about what the team need and what will get the best out of them, and I can implement necessary changes with minimal friction, again, leaving no team member or stakeholder’s experience unconsidered.
Stimming
I have both physical stims and activity stims. My physical stims are things like crossing fingers and toes, and certain ways I sit or stand to either feel comfortable or self-regulate. I also need to ‘doodle’ when I am talking or listening (although this might just be a diversion technique related to avoiding eye contact). As a child, I put these behaviours down to simply being odd or ‘quirky’ habits.
My activity stims tend to take the form of repetitive activities, such as listening to the same song or album on repeat (I wrote this article listening to Tom Walker’s ‘What a Time to Be Alive’ album on repeat for around 10 hours, for example, which is my ‘go-to’ for hyperfocus time), eating the same meal over and over again, wearing the same item of clothing or outfit over and over again (don’t worry, I buy multiple of the same outfit and/or wash it in between wearings!). These repetitive activities can go on for weeks, months, sometimes years. And then sometimes, out of nowhere, I will develop a strong and sudden dislike of that thing I have repetitively done for weeks, months or years and never do that thing again.
As an adult, particularly in the workplace, I have learned to suppress my stims in front of other people in the main (apart from the finger-crossing — although it is remarkable how fast I am still able to type with multiple fingers crossed over others), but this makes me feel dysregulated and feeds into the burnout cycle.
An insatiable thirst for facts and information
Whilst my childhood friends were mostly reading Enid Blyton and Roald Dahl books for fun, I got my kicks from encyclopaedias, thesauruses and dictionaries (which were all physical paper objects when I was a child). As information was less accessible, I used to spend quite a bit of my free time at local libraries and would research things I had heard or read to validate them and to learn more about them. What a haven for autistic people libraries are — information and the presence of other humans but with forced quietness.
As an adult, I can often spend hours researching something I’ve heard, read or seen until I have explored every possible avenue relating to the topic. This often accidentally happens between the hours of around midnight and 3am, and is usually associated with entirely trivial and unimportant topics such as whether or not snails have tongues (spoiler alert: they do. And you are so welcome).
This thirst for facts and information means I tend not to make false assumptions. It also means I don’t get a lot of sleep!
Prosopagnosia
Prosopagnosia, more commonly known as ‘face blindness’ is another lesser known common trait amongst the autistic community. We tend to be very detail-oriented – observing and learning ‘bottom-up’ rather than ‘top-down’ meaning we learn everything about all the bits that make up the whole, before we learn the whole. If I have met you, physically or virtually, I can probably describe in an unusual amount of detail the individual characteristics that make up your face, but put it all together and I have little hope of recognising you until I have met you a number of times, especially in different contexts.
When I was a child and struggled to recognise people, I put it down to my refusal to wear glasses long beyond the point of needing to. When I later gave in to glasses, then contacts, then laser surgery, I ran out of excuses for my inability to recognise people and had to resign myself to the reality that people could potentially have a face or a name, but not both!
I have an abundance of stories about not recognising people that I should absolutely have recognised. One day, over a beer, I’ll tell you them.
A mismatch of facial expressions
This lesser-known trait is particularly common in autistic women. From an early age, I have been constantly told to “cheer up” (even by strangers), and often when I am feeling indifferent or even happy. In short, my facial expressions often don’t match how I feel, but my words always will.
As an adult, particularly in the workplace, I expend a lot of energy thinking about and trying to adjust my facial expressions around others — the mismatch of which seems to be amplified in virtual meetings. So much so, it can be hard to focus on what is actually being said. As a result, I greatly appreciate being able to switch my camera off for non-interactive meetings, and will always try to create an environment in which my team members can do the same.
There really isn’t much positive to say about this one, other than it means I try not to make assumptions about other people’s thoughts and intentions based upon their facial expressions alone.
A lack of need for conformity
I remember from an early age not feeling the need to conform in the same way that many of my peers did. I didn’t care about popular opinion or popularity. That doesn’t mean I didn’t care about being liked, it means that I only cared about being liked for who I was. I didn’t care about artificial social constructs or place a lot of value on authoritarian hierarchy. That doesn’t mean I don’t respect people in positions of authority or seniority. It means that I don’t respect them solely?because?they hold positions of authority or seniority. People earn my respect based on who they are, what they know, what they do, and how they do it, rather than the position they hold in a societal construct.
This means I learn a lot of interesting things about a lot of interesting people and see massive potential in people that others may miss or overlook. It also means that I am able to think about solving problems without being held back by the constraints of popular opinion, which can lead to some particularly creative and highly effective solutions to problems that no one else had thought of (or was willing to say).
I also have no doubt my lack of need for conformity has negatively impacted my career progression at times. But I can live with that.
What autistic people want more than anything else is for you to learn about autism from autistic people.
In conclusion, if there was one thing — OK, humour me, two things — that I would love you to take away from reading this, it is these two things:
Author: Natalie Wood , Engineering Lead at Hokodo
Thank you for reading. If anything in this article has resonated with you, I welcome your thoughts in the comments (just keep them clean and constructive, please!).