I was originally going to title this topic something along the lines of “My experiences of the intersection of being autistic (undiagnosed for 60 years), being religious, being in a mixed marriage (by the way of ethnicity, language and religion), living in a liberal, secular, bicultural, multi ethnic society, and how language and social expectations affect communication across these intersections“. A little bit long and yet still not quite defining what I wish to say over a series of posts starting with this introduction.
Being autistic in a neurotypical world is fraught with difficulties, not least of which is communication. Because of how I communicate I have been described as deceitful, dishonest, devious, disingenuous, confused, incoherent and a liar, amongst many other derogatory terms. Perhaps from a non-autistic perspective it may seem so, but it most certainly not my intent. I earnestly try to be unambiguous, accurate and truthful at all times. I abandoned trying to be succinct a long time ago as doing so guarantees a misunderstanding of what I am trying to communicate, so I tend to be somewhat wordy as I throw in analogies and examples to hopefully illustrate what I mean.
Autism is usually defined in terms of deficits – for example: “Deficits in social communication and interaction”; “Lack of facial expression”; “Lack of eye contact”; “Not engaging in imaginative play”. This is how the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, version 5) defines autism and is the “Bible” used by the American medical profession to diagnose and treat mental disorders. For this post I will briefly touch on Deficits in social communication and interaction. At best, that description is deceptive, at worst, it is patently false.
Until the internet became ubiquitous, autistic folk had little to no opportunity to meet and share experiences with other autistics. Before the internet I had never met another autistic person, and although I might have met as many as a handful “in the flesh” in the past 20 years, I communicate with fellow autistics every day online. We were lead to believe that we were little more than a list of deficits. We do indeed struggle when communicating with neurotypical people. But now we can meet in the tens or even the hundreds, and on such occasions it is the neurotypical minority of those who have joined us who display the very same deficits usually attributed to autistics. It has become evident that autistics can communicate just as effectively as neurotypicals when that communication is with others of the same neurology. The problem arises when people of different neurologies communicate. As neurotypical folk outnumber autistic folk by about sixty to one, usually the blame is placed entirely at the feet of autistics.
What I am describing here is the double empathy problem. It’s a theory put forward by Dr Damian Milton around 2010 and has been slowly gaining traction ever since. The theory does fit the experience of autistics and most of us believe the available evidence supports it, but the non-autistic community seems to be less willing to even contemplate the concept let alone investigate it. Here follows a very brief summary of the double empathy theory:
Simply put, the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other. This is likely to be exacerbated through differences in language use and comprehension.Dr D Milton, 02 March 2018
Perhaps I could have titled this series “The double Empathy Problem”, as it seems apparent to me that the theory fits not only the issue of mutual understanding between autistics and non-autistics, but also mutual understanding between those of different religious persuasions, and those with different ethic, cultural and language experiences. However, I don’t intend this series to be theoretical or based on anything other than my own personal experiences and how those experiences have coloured the way I perceive and respond to the world in which I live. So for the meantime, the current title will remain.
I wish this series to be an exploration with no destination in mind. I am 73 years of age and autistic, although I and everyone else was unaware of that fact for 60 years. I have suffered from migraines for a little over 60 years, and of that I have been painfully aware (pun intended). More recently I have discovered I have aphantasia (an inability to form mental images), alexithymia (emotional blindness) and prosopagnosia (face blindness), and although I have probably had these from the day I was born I was not aware that how I experienced the world was any different from that of my peers.
I have no idea where this series may lead nor if it will go far. It’s been an on and off affair for some time in the wordlessness of my mind. Yes, that’s another unusual characteristic I possess. I don’t, can’t think in words, again something I didn’t realise others could do until perhaps a year or two ago. There’s probably a scientific name for this condition but I have not seen any reference to the condition let alone a name for it. Converting thoughts into words is a laborious procedure if I can’t draw on my stored source of preconstructed or memorised word sequences, so it’s unlikely that future posts in this series will occur at frequent intervals. For example I started this post at 8 this morning and apart from an hour while attending a Zoom meeting, and breaks for refreshments and calls of nature, I have been working solidly on it all day. It’s now 11pm. That works out at less than 100 words per hour!
If you wish to join me on this journey, you’re more than welcome. If you wish to contribute a comment or question my interpretation of my experiences, please feel free to do so. What I will not tolerate is any attempt at gaslighting. If you don’t know what that is, Google it, or wait until I cover the topic in a future post in this series. I have been subjected to gaslighting, both intentional and unintentional for much of my life as no one, including myself, realised my experiences were any different from those of my peers. I now know differently, so please don’t try.
And on that note, I will pause for now.
13 Feb, 2023 at 2:00 am
Looking forward to this series, Barry.
13 Feb, 2023 at 2:52 am
“Autism is usually defined in terms of deficits.” This is a brilliant observation. It get to the heart of whether autism a disability or a difference. Western thinking needs to move away from the disability assumption. While some people may be disabled with autism the mere presence of autism isn’t itself a disability. I’d love to see a campaign centered around the catch phrase ‘different, not disabled’. Perhaps it’s already been done. Thanks for the clarity here Barry. Looking forward to more.
13 Feb, 2023 at 8:57 am
The autistic community (autistic people) has been trying to present autism as “a difference, not a disorder” and that we are “different, not disordered” but the autism community (those who are not autistic but have a relationship to the autistic community) seem less keen on the concept. Pathologising autism is just as harmful as the pathologising of homosexuality was before it ceased to be a disorder in Aotearoa and Australia in 1972 and a little later elsewhere.
I view my autism as a “social disability” meaning that the negative attitudes of society towards my differences are disabling.
13 Feb, 2023 at 8:37 am
This was very interesting Barry. I sometimes think I’ve thought about every aspect of autism there is, but you just proved me wrong. I had never heard of the ‘double empathy problem’ – yet once you think about it, you can see it’s obviously there for many of us. Also, I’ve always suffered from speaking too briefly, which many people interpret as bluntness and take offence to it. I really hadn’t thought about someone speaking at length and still confusing others.
As to where this is leading, I believe you already have in your archives the foundation of a book. And it doesn’t have to be all there. One of the few advantages Indie writers have over commercial ones, is that we can publish when we please. So my book The Shyness Guide started from putting a bunch of posts together. Five years later I completed a second version that was double in size and republished it. Technically we can republish as many times
as we want.
13 Feb, 2023 at 11:24 am
The double empathy problem exists in many forms and not just between autistics and non autistics. In hindsight it has been a significant factor in many of the difficulties the wife and I have had to face over the 51 years of our marriage. We weren’t always aware of how our different cultural backgrounds influence different perspectives to so many aspects of life. Even after all this time, we still occasionally come across differences that we realise are due to culture and not personality.
And when I look at how ethnic minorities fare compared to a dominant culture, I can see similarities to the way the autistic autistic community has fared in a dominantly neurotypical society.
24 Feb, 2023 at 12:18 am
Yes, keep writing Barry. You’re giving us your autism experience and we listen, and maybe respond. To me life’s all about interaction.
25 Feb, 2023 at 12:49 pm
I just had the good fortune of moving to a house with at least two other extremely intelligent and empathic autistic people in residence, and it’s been wonderful! None of us ever have to finish a sentence because our conversational partners have the concept within the first handful of words, and all of us are very comfortable tumbling over one another verbally like a pack of puppies. I’ve been interested to note that all of us look away when spoken to ~ as I do this myself, I understand it’s to block out overwhelming amounts of visual information in order to concentrate on what’s being said ~ but we’re all so used to neurotypical expectations that even I have to take pause and remember why.
28 Mar, 2023 at 3:17 pm
I’ve been hearing people use the phrase “double empathy problem” without explaining, and it’s been very confusing. Thanks for making the concept clear for me.
23 Apr, 2023 at 2:36 am