What autism is (and isn’t), why I’m disclosing with such abandon, and why nobody knew I was autistic in the first place
Towards the end of 2022 I went into hiding. I took sick leave from work, I set my LinkedIn account to hibernation (I wasn’t using any other form of social media) so no one could contact me, I largely stopped answering my email and phone. This wasn’t the first time I had done this – not the first time I had turned my back on the world.
In the past, I took such action when I could no longer stand some aspect of living – not my job, not my relationships, not the expectation to conform. Bunkering down for days, weeks, or even months at a time has always allowed me the chance to recharge and reset, to get back up and join the circus all over again.
This time though was slightly different. I was exhausted and over many things, yes. But in October 2022 the main reason I dropped off the face of the planet was because I had finally discovered the root cause of my lifelong discontent: that is, that I’m autistic. Yes, that’s right, I’m autistic. It floored me too.
Receiving the diagnosis was both affirming and confronting. I have always felt like I’ve been play-acting – doing whatever was necessary to fit in and pretend that I belong. But deep down I’ve always known, with unerring certainty, that I was different from “the norm”. Life’s rules have often eluded me, and while I don’t believe I lack intelligence (some may disagree!) much of it has often made little sense to me at all.
So, from a very young age I did what anyone who found themselves on a foreign planet (for the non-autistic world is indeed a strange and foreboding place) would do: I watched and I learned and I listened, so that I could go largely undetected, a skill most autistic people adopt – one that helps us blend in at great personal cost.
But Glenn – you don’t seem Autistic
The main reason I believe I went almost 52 years before anyone (including myself!) hit upon a diagnosis of autism, is that I have become so adept at the (dark?) art of masking.
If you’re not familiar with it, essentially, masking is mimicking – it’s the skill of becoming the cleanest, shiniest mirror you can, so that when non-autistic people look into you they see themselves (maybe even a better version of themselves – if I might be so bold) looking back.
I’ve always been a bit of a people watcher (not a perve!), enjoyed studying their mannerisms and listening to the way that they speak. And since my diagnosis, I realise, with renewed clarity, that I was watching so that I could in fact learn – how to act, how to fit in, how to strip away the parts of me that didn’t belong in a world I often felt (and still feel) didn’t want me. Even today, I know that most times I’m able to make a good first impression. I’ve actually been told, more than once, that I can get along with anyone (not a trait typically associated with autistic people), I have an amazing track record of landing the job if I get as far as an interview, and, you know, I got the girl (hi honey!).
It’s as the weeks and months unfold that small signs of my real self begin to peek through and I notice most people start to get suspicious. I’m too direct with the comments or requests that I make, too much of a stickler for ‘the golden rule’, I expect others to meet deadlines I (or sometimes they) have set. I can’t stand messiness, lateness will get my blood boiling, and dishonesty will result in a dose of reality from yours truly so sharp it seems to take weeks (or forever) for some people to allow me back into the fold. In short, they realise I’m not actually the easy-going smiley chap they thought they’d met.
The biggest problem I see with masking – and it’s where I find myself at this point in my own life – is that it’s exhausting to the point of utter depletion. And the longer and more that you do it, i.e. the longer you go without knowing you’re actually autistic, the greater the likelihood of poor outcomes due to declining mental health. A study from August 2022, just a couple of months before I received my own diagnosis, found that people diagnosed with autism in adulthood are nearly three times as likely as their childhood-diagnosed counterparts to report having psychiatric conditions, like anxiety and depression. Another study, from 2019, found that compared to typically developing individuals, individuals with ASD (that’s the acronym for Autism Spectrum Disorder, typically shortened to autism) are 4-times more likely to experience depression in their lifetime.
Throughout my own life, whenever I attempted to speak up, even to health professionals, almost everyone dismissed my concerns by explaining them away as “how everyone feels” or advising that I should “get more sleep”, “eat more fruit and vegetables”, or “man up” (an old fav (not!) that one). And I’m a heterosexual bloke, I’m more likely to actually receive attention and therefore help. For women and people who identify as LGBTIQ+ the situation is much worse.
What is autism and can you recover from it (and debunking some common myths)?
Autism is a condition that affects how a person thinks, feels, interacts with others, and experiences their environment. Every autistic person is different to every other autistic person, which is why it is described as a ‘spectrum’ (and no, not all people are on the spectrum – that’s like saying we’re all accountants because we can divide and subtract).
Autism is not an illness or a disease – it is a neurodevelopmental condition. The brains of autistic people actually work differently to the brains of non-autistic people. You’re either born with autism, or you’re not. You can’t catch it from anyone else, or spread it, and it isn’t caused by bad parenting (okay mum and dad), vaccines (okay anti-vaxxers), poor diet, or any other bogus hypothesis you may have heard or read.
You also cannot recover from autism. I’m not going to recover from autism. If you’re autistic – you’re autistic your whole life. Autism is not a medical condition with treatments or a “cure” (even though you’ll read plenty of stuff on the internet that says there is – it’s a bit like sexual orientation conversation therapy – a load of bunk that’s all about control and assimilation). But supports do exist for autistic people who need them – something that also differs for each of us depending on our needs.
How the language you use shows respect
Now that I’ve covered a few myths, and many truths, about autism, I thought I’d touch on the importance of language – a vital component in showing respect towards, and advancing the understanding of, any of society’s minority groups.
(As a language lover, an autistic person, and someone who spent years working with Aboriginal and Torres Strait Islander People, this is an area I believe many of us treat carelessly or completely overlook.)
There are two current approaches when it comes to referring to autistic people: identity first and person first.
My view, and it’s also the language used by the majority of autistic people, is that identity-first (I am autistic) is the language we should be encouraging. I prefer this usage because, as I’ve already described above, a person is born autistic, you don’t become it – it is who you are, love it or hate it.
Person-first (I have autism) is a bit like saying I have bald, or I have short (two things that I am 😉). The argument from people who take this approach is that it doesn’t define someone by their diagnosis, it isn’t labelling them. However, as I’ve also already mentioned, it isn’t the preferred choice for most autistic people, and, is in fact used more by non-autistic people who have no autistic relatives. I’ll let you make up your own mind about that.
Another area where there exists a current, unfortunate disconnect between the language used by autistic people and that used by non-autistic people, is in the use of the terms high functioning and low functioning. For most autistic people these terms are cringe worthy at best, but suggesting they’re considered highly offensive by the majority of autistic people (if I can speak for other autistic people) isn’t overstating things either.
The current diagnostic model for autism determines levels of support required in specific areas – not levels of functioning. There is no diagnosis of low- or high-functioning autism.
Low functioning implies that autistic people who might require considerable support in their daily lives lack any discernible skills or talents, when that clearly isn’t the case. Many autistic people who require significant daily care hold multiple degrees and live fulfilling lives – just not always in the way non-autistic people would live them, and not without a lot of assistance.
The term high functioning suggests a person requires no additional supports (or is somehow “getting away with being autistic”), which again may not be the case. Anyone who knows me and learns that I’m autistic might consider me to be “high functioning” but that discounts the significant stress, anxiety, and depression I have battled my entire life as a result of trying to live in a non-autistic world.
Just because I have strengths and have become adept at hiding who I am, and my struggles, doesn’t mean I don’t also have considerable weaknesses I have never truly been able to overcome. The autism spectrum is not a line with low functioning at one end and high functioning at the other. How each of us communicates and copes with the world changes from day to day, depending on the given circumstances.
Glenn, at your age, why even bother getting a diagnosis?
For me the decision to get a formal diagnosis wasn’t difficult – I like to know things, I like (need) certainty wherever possible. Just the suggestion (the first time in fact that it had ever been suggested to me) that I might be autistic was enough for me to go looking for that definitive answer. So I saw a psychiatrist who thought I had “autistic tendencies” (that’s the lingo he used), and he referred me on to the Mater Hospital’s Intellectual Disability and Autism Service, a unit whose stated aim is to ‘improve the health and wellbeing of adults with intellectual and neurodevelopmental disabilities’. A series of assessments and interviews later (it was far more convoluted than I’m making it sound, but for brevity, let’s leave it at that), I had my diagnosis, along with a warning that I was suffering from something called ‘autistic burnout’ and that “If this is not managed, it will worsen over time.”
Now I understand that there are people out there who don’t want to know if they have something wrong with them. Who take the attitude that if they’ve got cancer, for example (or even suspect they have cancer), or ADHD, or anything else that you can imagine, they would still rather go on living as they have been than deal with pills, treatment, or any other significant changes to their lifestyle.
For me, however, the endless cycle of falling down and having to get back up again, coupled with my age, meant that I already felt like I was going to struggle to go on if I didn’t stop everything and take action. I had no idea, despite the suggestion put to me that I could be autistic, that when I started down this particular path an autism diagnosis was where I would end up.
Of course, even though I now have a diagnosis, I could still choose to ignore it, press on regardless, continue living my life in a series of peaks and troughs and maybe I would be okay. But I didn’t think so and neither did the clinical psychologist who assessed me. Instead, I believe I would have ended up in a very, very dark place – probably the darkest – if I didn’t try and accept who I am and live my life with this new framework as the backdrop.
How I made the decision to disclose my diagnosis as far and wide as the internet will take me
The decision to tell someone you’re autistic is, obviously, very personal for everyone – and not one any single autistic person takes lightly. My sleepless nights in the lead up to publishing this story put into perspective how I have wrestled with my own decision to not only write this piece, but to promote my newly-discovered autism on the internet.
I have of course read some quite depressing accounts of the experiences other autistic people have had when disclosing – something I’ll never fully be able to understand. Like anything that isn’t a preference or lifestyle choice, an aspect of yourself you can’t change – colour, sexual orientation, gender, race etc. – discrimination, bullying, and judgement towards someone disclosing only shows the perpetrators of such hate for the small-minded, frightened individuals they truly are.
Autism Spectrum Australia have conducted research into the disclosure experience of autistic adults and it is well worth a look, highlighting, as it does, the complex nature of the research undertaken so far, as well as the nature of disclosure itself.
Autism Spectrum Australia suggests the positives to disclosure can include understanding, acceptance, individualised support, accommodations, and person-centred care. While non-disclosure may ultimately limit the supports available to autistic people, and increase their risk of mental health concerns, despite potentially helping them better navigate the non-autistic world.
For myself on disclosure, I feel a bit like I’m damned if I do and damned if I don’t. As I said earlier, I have (more than once) left a workplace suddenly and without explanation. I have also, unfortunately, done the same with friendships. Something I’ve covered in this story entitled Sorry I ghosted you: an Autism relationship tale – another consequence, I realise now, of my particular brand of autism.
You see, there exists for every autistic person the double bind where disclosing that you are autistic risks people judging you based on the label, while choosing not to share being autistic means that you’ll be judged anyway, because the way an autistic person behaves won’t align with the expectations held by most non-autistic people – our different wiring means that by our very nature it’s impossible for us to always connect.
I’m fortunate that so far my own experiences of disclosure have been mainly positive, or, at worst, neutral in nature. That’s not to say my needs have always been met or that I haven’t encountered my fair share of disbelief from the people I’ve chosen to tell – just that I haven’t yet been openly bullied or criticised (yet!).
Indeed, very recently, I had the pleasure of disclosing that I am autistic to a couple of former colleagues, Janice and Marie, over coffee and cake (they were buying). So non-judgmental, yet interested in what it all meant, in general and for me, were they that I later resolved to reactivate my LinkedIn profile and share this story with every connection I have. Perhaps, in another future post, I’ll let you know how that all went!
(L) Glenn posing with handmade goodies from former colleague Janice
(R) Stitched message on the back of the ‘howzat’ cushion – before Janice knew Glenn is actually autistic
I do of course realise that the decision to disclose my autism so publicly (if indeed anyone chooses to read this blog!) could be seen in a particularly negative light, and that I could become the target of all manner of ridicule and hate. But advocacy has always been important to me, and finding out so late in my life’s particular journey that I am indeed autistic, makes me feel like there is much I have missed out on – and so much more that I can do to educate myself and others about our neuro differences.
Finally, I can’t finish this piece without giving a huge shout out to my gorgeous wife and incredibly generous son for their unwavering support. I’m far from perfect but they love me anyway. As far as I can figure that’s about the best outcome anyone could hope for.
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