I wrote the tweet below for #AutismAwarenessWeek in 2021 (I’ve since deleted my Twitter account). The point I wanted to make is that not all #Autistic people show the stereotypical signs of autism that people who are merely “aware of” autism might immediately think of.
The tweet is written in the negative; it says what autism doesn’t mean for me. But the replies I got made me think: how would I tell the story of what autism *does* mean for me, if I’m thinking of the challenges that it presents?
Perhaps predictably, some replies questioned whether I’m indeed autistic – despite the fact that none of the things above is mentioned (at least as a necessary feature) in the diagnostic criteria for autism!
I’m not going to talk here about the things that can be regarded as the life-enhancing aspects of autism – though to be honest, I can’t think of many at the moment apart from the analysis skills that have brought me an above average salary and the privileges that come with that. Not insignificant, but no panacea.
I was diagnosed in the summer of 2019 with Autism Spectrum Disorder F84.0, qualified by “Level 1: Requires Support”.
The qualifier is odd for me to read now, because I never have received support in any form, and don’t expect to get any in the future, apart from maybe two simple “Reasonable Adjustments” at work that I’ve had for the last couple of years.
What I’m not saying here: I acknowledge my privileges
I’m not saying anything in this blog post that’s intended to downplay the more significant challenges faced by other autistic people and their families. Autism is a spectrum, and it is true to say that the challenges that autism gives to me are easier to deal with than those it gives to many others.
I fully acknowledge that I’m one of the autistic people who has “made it” by classical standards. I earned a PhD and this secured me an above average salary for 30 years (although my career was cut short by burnout – so average my salary over a more typical 50 years and its, well, about average).
I have many socioeconomic privileges as a white Gen X male living in a relatively prosperous part of the world. I had access to decent and “free” education all the way up to and including my PhD. And i have neurological privileges in that my autism was something that I was able to mask (without knowing) for the first 50 years of my life. My autism also gave me some of the thinking skills that underpinned my career and education. I don’t have any comorbid conditions that cause me significant additional (to autism) trouble in every day life (although – don’t tell Lynn – I do relate to a lot said about ADHD and I recognise Pure-O OCD in my thinking patterns that lead to obsessive rumination). My autism doesn’t cause meltdowns or anything particularly visibly difficult to deal with in a social setting, or, indeed, at home.
The point of this blog post is really to ask that people with Level 1 Autism are not dismissed as having “mild autism” or “autism lite” or “not real autism“. Despite my privileges, I am still negatively impacted by the other things I’ve written about below, that I have had (and likely will continue to have) zero support for apart from two “Reasonable Adjustments” that I had for only the last couple of years of my career. The dominant emotion of my entire life has been anxiety, and suicidal ideation has been a too-frequent visitor. Both of these could be unpacked more in terms of how they have blighted my life and the lives of those close to me.
I do feel in some ways robbed of a life I could have had if I’d been diagnosed earlier, and I feel angry (I’m working on letting it go) for all of the bullying and negative strokes that I simply “took” as part of my life without knowing that I deserved better.
I feel in some ways to be, along with other “Level 1” people, the epitome of the statement “Autism is an invisible disability”; to the average observer there are no outward signs that would give away what is going on inside our heads.
Maybe some people might notice that some of us don’t get eye contact, or don’t hold it for long. Maybe some might comment that our faces don’t show much emotion (“Happy? Tell your face then!”, “Smile mate! It might never happen!”).
But apart from that our disabilities are invisible, and it often feels like we ourselves are invisible too.
So I want to address that invisibility by laying out how I think autism affects me, in as much detail as I can muster.
You might think that most of it is trivial, but please believe me when I say that it all adds up in the same way that microaggressions, through their sheer numerous and pernicious onslaught, add up to full on aggression. In fact I think that much of the autistic experience of the neurotypical world could be described in terms of microaggressions.
Invisible no more
I’m wary now that what I write here will seem like bleating. But that in itself is an indicator of my internalised ableism. Society has told me to shut up and get on with it so often and so firmly that I’ve believed that I should. Hello again Impostor Syndrome.
Also, it’s really hard to draw a line between “This is 100% definitely down to my autism” and “This is just one of those things that happens to everyone now and then”. I’ve lived with “me” for five decades and it’s easy for me to think that “Everyone gets this, don’t they?”.
But here goes.
The first thing that comes to mind is my sensory differences. This is where my “The penny drops” moment came from that made me realise that I’m autistic. It’s also one of the things that led me into a gambling addiction that nearly killed me. Briefly, the focus on gambling (typically late at night) provided a very effective cocoon against life that allowed me to decompress from the sensory noise of the day.
The second major area would be my lack of attraction to, and understanding of, and actually, aversion to, the social world.
If you know about autism, you might be asking now “What about Restricted and Repetitive Behaviours?”. To me, it seems that these are part of my solution to the two problems above. Intense hobbies and learning quests provide the flow state that screens out the sensory and social world and gives me peace and respite from them. When I accidentally discovered online gambling, that provided focus and flow on steroids and gave me that wonderful cocoon away from life, but at enormous financial and psychological cost.
I have an autistic experience of the sensory world across all of my senses, I think.
In order of impact, I would say Hearing and Audio Processing, Internal body awareness (proprioception), Vision and Visual Perception, Touch and reaction to touch, smell and taste.
Let me wander through these one at a time.
Hearing and Audio Processing
This is one of the big ones, and it’s what led me to seek diagnosis. It isn’t just about the mechanics of hearing either; my ears are pretty good. Being an engineer, I’ve tested my ears over the years to find the highest frequency that I can hear, and I’ve always prided myself that this is keeping above where it should be for my age. I have no problem converting sound waves to a perception of sound.
Where I do have problems is:
- Separating wanted information from background noise.
- Dealing with the emotional content of voices, music, songs etc
So the problems are all about processing the audio, and it’s not something that is very much under my control.
If I’m trying to follow conversation in a noisy environment, I really struggle to be able to separate the voice I’m listening to out of the background noise. In fact, for me, that “background noise” is actually as much part of the “foreground” as the voice itself: it’s not background at all. As with many of the other impacts of autism, any inroads I can make into succeeding here take an awful lot of energy.
I have no “off switch” or even a “volume control” for the unwanted sounds (in fact I was quite amazed to find out that other people apparently do!)
The emotional content of sound flows into my brain unfiltered and unstoppable, and this is not only tiring in the same way as above, it can get overwhelming. From grumpy people in an open plan office, through annoyingly-perky or annoyingly-melancholic adverts on TV, to musicals and even certain types of music and certain types of TV drama (generally American series due to the style of background music), it all flows in like rubbish carried into an open storm drain on a torrent of water. Once inside, it doesn’t dissipate fast enough and I can reach the point where all I can do is leave the room or reach for my earplugs. If I can’t do either of those things (and I didn’t know they were worth trying until a year or two ago) I become overwhelmed, grumpy, agitated, cross.
If you’re not autistic, there are some good videos on YouTube that give a glimpse into what it’s like to have this kind of hearing.
Internal body awareness (proprioception)
I initially put this one at the bottom of my list, but moved it up into position 2 because I realised when thinking about it that this contributed massively to my experience of An (Autistic) Burnout. I just don’t feel stuff (at least nowadays).
Maybe this is why the emotions flowing in as I described above can so easily become overwhelming; they have nowhere to go for onward processing. I don’t get emotional feelings resonating in my being and/or body in a way that I can process them, identify them, and label them. I am now putting in a lot of effort to tune into the little whispers that my body does give me, because I now know that these little whispers can actually represent something that is a big deal and deserves attention and corrective / protective action from me.
During the summer leading up to burnout, I was operating at dangerous levels of stress, but all I perceived was a kind of important-feeling busyness. My body and internal systems were trying to tell me, but they were speaking a different language to anything that I could understand.
I don’t process physical feelings well either, though these are just mild inconveniences or even useful; I can pick up and eat food that is far too hot for others to consider handling for instance (I used to get called “Asbestos fingers” as a teenager). I can knock back a hot coffee like I’m drinking a shot.
But, contrarily, I would feel a chill draught caused by a butterfly’s wing in a different country.
Vision and Visual Perception
I wasn’t aware that I’m different here until I saw videos that describe my experience perfectly whilst stating that it is atypical. I notice things that others miss, and my attention is drawn to things involuntarily. There’s a good video here that shows what I mean. This video also covers the sound processing aspects I’ve mentioned above. My vision isn’t quite so light-sensitive as shown in the video, but the way attention is drawn to fairly irrelevant things is bang on.
This video explains to me why I’m always stopping to pick up nails and wood screws (that nobody else sees) from the pavement or gutter, angry at the carelessness of whoever dropped them there nonchalant to the possibility of causing a puncture in someone’s tyre.
Smell and taste
I was a stereotypical ‘picky eater’ in my childhood. I had a limited palette of “safe foods” that I knew I could eat and got incredibly stressed if, e.g. on a school trip, I knew I would be given something unpredictable. I’ve learned to love a much wider palette of food now, but I am still fussy and prefer my repertoire.
An odd one for me is that I find that waste bins containing orange peel start to smell like cigarette ash after a very short while, and the smell gives me a headache. This was a problem for me when I worked in an open office, and let to me getting quite angry because I thought I just had to live with it (I thought – perhaps correctly – that I’d be seen as whining if I asked for anything to be done about it). Another microaggression of life against autistic people.
An autism diagnosis would at least have enabled me to say “I’m autistic, I’m sensitive to particular smells, this gives me a headache and stops me being able to concentrate on work”. That would have solved the problem, and saved me shaving time off my life due to the inner anger and stress.
Touch and reaction to touch
This is no more than an inconvenience in practice; touching sandpaper or new wooden spoons gives me the absolute heebie jeebies. It makes me suck my lips in and shiver.
However, if I mention it to anyone, the response I usually get is “Don’t be silly!”. A micro aggression again, and a psychological “stroke” that can cascade to “Don’t be“.
One people don’t usually mention as sensory: Eye Contact
You wouldn’t perhaps expect eye contact to appear in a list of sense modalities, but it absolutely is a strong sensory experience for autistic people. It produces in me an aversion, a sense of fatigue in and around my eyes if I try to maintain it too long.
Yet I’ve read that many people experience positive feelings from eye contact, even a release of the “love chemical” oxytocin. I wonder sometimes what I’m missing out on here.
My lack of interest in socialising has been thrown into sharp relief by the social restrictions of 2020 as a result of Covid-19. It’s entirely accurate to say that my social life has not changed one tiny fraction as a result of these restrictions, so I haven’t even registered the restrictions as, well, restrictions. In fact it has been a blessed relief not to be expected to shake hands, chat with delivery drivers, or feel expected to visit people.
I think some of my lack of interest in socialising comes from the sensory challenges I’ve listed above; it’s simply no fun being in most social environments. But there is more to it. Probably due to a combination of innate differences and lack of opportunity to learn because of the issues above.
I can’t perceive and understand people’s intentions. I assume by default that everyone I meet is wholesome and honest and kind. When they act in opposition to this, it’s a shock and an inexplicable event. I have no chance whatsoever in dealing with people’s opinions of other people, especially where they contradict each other.
As with most autistic people, I take things literally. Note that this does not mean that I can’t understand, and use, metaphors and analogies; I actually think I’m pretty cool with this! When someone says “Hey, could you do X? No probs if not.” I will take the second sentence to mean that there will be no problem if I decline. I’ve learned through bitter experience that “No probs if not” means “If you say no I will descend into rage from which we will never recover”.
I have no interest in social games or traditions; the “How are you / I’m fine thanks and you?/ Oh can’t complain / Did you see the game last night?” exchanges and traditions around calendar day events like Christmas, Birthdays, Easter, Valentines etc hold no appeal for me and represent a pure drain on my psyche with no payback. Yes I loved getting gifts as a child (why wouldn’t I?) but the economically inefficient and forced gift exchange as adults is pure encumbrance and obligation that if I’m honest I want no part of, and I’m really quite joyful to say is becoming less and less of my life as I get older.
All of that nourishment that others get from social contact is absent from my life. I don’t even know what it is that I’m apparently missing. This is particularly awkward for me as I approach mid and later life; the time in which, conventional wisdom says, social relationships become even more important than ever and even become the essential nature of life.
And, taking part in socialising with little payback and without the ability to do it all without extreme effort and concentration means that what socialising means for me is a) fatigue and b) tearing me away from the hobbies that are my “happy place”.
Impact on Family
All of this has meant that I’ve derived very little pleasure and almost no support (the support that everyone needs) from social relationships – even family ones. And this has created tensions within my family, most notably between me and my mother who would happily base her entire life around family relationships if my dad (undiagnosed autistic, I’m convinced) and I would play ball.
My mum has struggled to interpret my indifference (and aversion) to social things as anything other than selfishness and rudeness, and she still struggles to know how to respond to me. One of my daughters hasn’t spoken to me since 2012, for reasons that I still don’t fully understand but I’m sure must at least partly stem from the way I am due to autism. As a result I now have a grandson whom I’ve never met and I don’t know whether I will ever have any kind of meaningful relationship with him. I think I’m probably right to say that my autism cost me my first marriage and bought the horrific life upheaval that resulted from that.
And my wife Lynn has had to endure more than one maladaptive behaviour that I’ve adopted over many years to self medicate myself away from the noise of life, including a problematic relationship with alcohol, me hiding away with my hobbies leaving her to shoulder responsibility for family issues, and a five year gambling addiction that nearly killed me.
My memory causes me significant trouble. Whether its being unable to copy numbers from a spreadsheet to a Word document unless I can see both at the same time, or the many occasions where I’ve forgotten an important event in someone else’s life (e.g. the day I forgot that my wife had an interview for a promotion), it sucks. It gives other people the impression that I don’t care, which hurts because I absolutely do.
It is one of the things, I think, that makes it difficult for me to make and maintain friendships.
Gender role struggles
“I tried being a man and I didn’t like it”.
What I mean by this is that I found, and still find, the expectations of the “man” role very hard to shoulder. The idea that, despite wholeheartedly and willingly avoiding sex and gender based discrimination (we are all equal humans) somehow men are still expected to be the heroes when “it matters”. We are expected to be the leader in a crisis, to get the bar food order for our family right every time and correct any mistakes graciously and silently and take any table complaints to management. We are expected to keep family finances on track not only month to month but strategically too; to ensure that our family is “looked after” on a path to long term financial security. To absorb any difficult emotions in a family unit and help to fix them without replaying them. We would be expected to go downstairs naked but for a baseball bat if there is an intruder in the night. To sacrifice ourselves on a sinking ship. To go to war. And to dress ready for war in dull camouflage colours at all times, just in case. This can all fuck off.
None of this means that I want to be a woman, or want to downplay the similar and equally (or more) burdensome expectations that women are asked to shoulder by society and the gender binary stereotypes.
Nor is it intended to somehow excuse and balance off the ways that women are still (in 2022 ffs) oppressed by men and patriarchy and sexual stereotypes and misogyny and sexualisation.
Where I’m going with this personally, I think, is an understanding of and acceptance of the word “autigender“.
What it has meant for me over the last 50 years is another source of feelings of alienation that has run alongside and been tangled up with my undiagnosed autism.
Despite the fact that I, myself, am perfectly happy with alone time and kicking around with my wife and the dogs, the fact that society is constructed around social activity (the clue being in the word “society”!) leads to guilty feelings. This may be considered to be internalised ableism; I judge myself, having learned through being judged by others, and find myself lacking in social performance. The judgement from others is sometimes subtle, sometimes brutal, but nearly always unconscious; nobody sets out deliberately to spoil my day by judging my atypical social preferences. But a simple “We do miss you!” from my parents, for example, turns on my internal self judgement and feelings that I’m failing others by not “being normal”. Microaggressions, again.
I think I’ve mentioned everything that I wanted to above. I’ll just end by saying that the privileges that I mentioned that come with a successful career have come at a huge price. My attempts to follow everyone else led to burnout and permanent changes and limitations to my psyche. I’m now about to use the privileges that I’ve accrued to retire early. Not to a yacht (not that I’d want one) but to a more modest lifestyle where I can finally be fully myself and finally free of most of the issues above.