Thoughts on autism, religion, culture and language and their intersections: Introduction

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.

Most autists…

Most autists (people who are autistic) face a range of difficulties in social situations. But almost every social situation that autists face is with allists (non-autistic people). In social situations where the ratio of autists and allists is reversed, it’s the allists , not autists who face a similar range of difficulties.

Most autism “experts” (allists who study autists from an allistic perspective) have concluded that autists lack empathy. Autists are more likely to hyper empathetic or hypo empathetic than allists, but what sets autists apart is how we express our empathy.

Most autists avoid eye contact. Most autism “experts” will tell you it’s because autists lack an understanding of the importance of eye contact in social interactions. In other words, autists lack theory of mind. Most autists who avoid eye contact will tell you they do so because making eye contact presents a sensation ranging from “icky” to having the “soul exposed” to being physically painful. In my own case, I can, with some effort, consciously make eye contact even though I find it very unpleasant, or I can listen to what you are saying. I can’t do both.

Most autists don’t have prosopagnosia (face blindness), but it’s more common amongst autists than amongst allists. However most people with prosopagnosia are allists. I have prosopagnosia.

Most autists don’t have alexithymia (emotional blindness), but it’s more common amongst autists than amongst allists. However most people with alexithymia are allists. I have alexithymia

Most autists can communicate by speaking, but non-speakers are more common amongst autists than amongst allists. However most non-speakers are allists.

Most autists are straight, but autists are more likely to be homosexual, or bisexual than are allists. However most gays, lesbians and bi’s are allists.

Most autists have a sex drive, but autists are more likely to be asexual than are allists. However most asexual people allists.

Most autists are cis gendered but autists are more likely to be trans than are allists. However most transgender people are allists.

Most autists identify with a specific gender, but autists are more likely to be gender diverse or not identify with any gender than are allists. However, most gender diverse and agender/nongender people are allists. I view myself as agendered, but for reasons of safety (learnt the hard way in the 1950s – 1970s) present male.

Most autists do not suffer from migraines, but autists are more likely to be migraineurs than are allists. However most migraineurs are allists. I suffer from chronic migraines.

Most autists do not suffer from epilepsy, but autists are more likely to have epilepsy than are allists. However most epileptics are allists.

Most autists are employable, but it’s also true that most autists are unemployed or under employed. The cause is how allists perceive autists and/or refusing to accommodate the needs of autists. I was forced into early retirement, at the age of 50, due to burnout, although it would take another 10 years before I discovered it was caused through being an undiagnosed autist.

[TW: self harm, suicide] Most autists do not commit suicide but autists are nine times more likely to commit suicide than are allists. In America, autistic females are 37 times more likely than allistic females to attempt suicide.

Most autists experience meltdowns, shutdowns and/or burnout at some stage of their lives. Most allists perceive these to be wilful acts by autists in order get their own way or to gain attention. They are not. They are caused by emotional and/or sensory overload, over which the autist has little or no control. In the case of meltdowns or shutdowns, the best an autist can do is learn to avoid situations that might cause an overload (easier said than done) or learn how to be out of view of others when it occurs (also easier said than done). While burnout ( as a result of long term stress) is quite common for autists, it is especially common when they are unaware that they are autistic. In fact burnout can often lead to the discovery of being autistic as it eventually was in my case.

Most autists who undergo ABA therapy (known as conversion therapy when applied to other conditions) develop PTSD. Most allists are convinced ABA helps autists become more like their allist peers. Most autists view ABA as a form of torture that teaches autistic children that their needs and wants are less important than those around them, that compliance is more important than autonomy, and that they must pretend to be allists, otherwise known as masking. ABA does not make an autist less autistic.

So what’s my point? Autists are not the sum of our deficits. Yet we are collectively still perceived as somewhat less than fully human – inferior to allists. No, we are not. We are different, true. But that difference is primarily in how we experience the world around us, and as a consequence, how we respond to it. Current allistic understanding of autism and how allists respond to that understanding dehumanises us to such an extent that when an Autist is a victim of a “mercy killing”, the public and the media often empathise with the perpetrator rather than the victim, whereas if the victim had been born blind, or without legs , public and media empathy will be strongly in the victim’s favour with zero shown to the perpetrator.

Over the next few weeks, or months (you all know how irregular my posts can be) I intend to write a series of articles on how current medical and social understanding of Autism from an allist perspective causes Autists more harm than good and perpetuates the myth we are defective humans desperately in need of a cure, or failing that being eliminated from the human gene pool.

Watch this space (but don’t hold your breath).

Autism quote

Never a more true sentence has been written!

Autism is a disability but only because we are trying to function in a world that is not built for us and refuses to accommodate our different needs.

Autism – Given up but I’m trying – 2022/08/24

Autism “awareness”

Ngā kaipānui kia ora

When I tell people about Autistic Pride they say, “how can you be proud of something that you have no control over? That doesn’t make sense? How can you be proud of being Autistic?”

Lyric Holmans, Neurodivergent Rebel

April is Autism Awareness month, and today, Saturday 2^nd April is World Autism Awareness Day. It’s a time when many autistic people “go into hiding”. Why? Because autism is still portrayed as a bogeyman – something that is undesirable, that destroys families, causes misery to “sufferers”, that needs to be eliminated. No it’s not. From my perspective, autism describes a way of perceiving and experiencing the world that is different from the way the majority of the population perceives and experiences the world. It’s not so much about deficits and disabilities, it’s about an alternate way of being. The bogeyman, if there is one, is that the non-autistic world writes of the autistic world as something undesirable.

So back to the question “How can you be proud of being Autistic?” I’d answer by saying “In the same way one can be proud of being gay or black or trans or Māori or Native American or…”. It’s a way of saying “Even though society devalues me for being who I am, and puts obstacles in my path that limits my ability to develop to my potential, I deserve to be recognised as a worthy and valuable member of society, and my rights and needs are no less important than the rights and needs of anyone else”.

I object to having an Autism Awareness month for the same reason I’d object to a Gay Awareness month of a Māori Awareness month. Look at it this way: there isn’t anyone who isn’t aware of there being gay people, trans people or people of colour, but that does not prevent the likes of racists, homophobes and transphobes from spreading hate and disinformation about them. It doesn’t prevent normal, intelligent people from failing to appreciate the social barriers that are placed in the way of individuals who are members of minority groups – in other words intentional and unintentional discrimination.

Likewise, I doubt that today there is a single person who isn’t aware of autism. For goodness sake, in some quarters, there’s panic about an “autism epidemic” being accelerated by vaccines or 5G or plastics or the New World Order or GMOs or… something. In fact it’s nothing more that a growing realisation within the health sector of what autism actually is. What is sad is if they had consulted with actually autistic people instead of making lab rats of us, they would have had that “Ah ha” moment long ago.

What we need is not awareness, but acceptance at a minimum. Better yet would be valuing the alternative perspectives that autistics and other other forms of neurodiversity bring to society. Because Autistic people perceive and experience society and the world differently, we express our experiences and understandings differently. Accept that our differences are not deficits, but are a valuable and important part of the diversity that makes the human species what it is.

Embrace diversity!

Trigger warnings

Trigger warning: <sarcasm> this article may irritate some people who lack empathy. </sarcasm>

Today in the comments section of a post of one of my favourite bloggers was a comment by one reader that they were irritated by trigger warnings that occasionally precede online articles. The reader made the comment that “[E]verybody needs to put on their big boy/big girl panties and deal with it“. This to me seems to be very inconsiderate, lacking in empathy, and downright harmful. It triggered prompted me into composing this article. Let me elaborate.

Personally, I approve of trigger warnings. They are not there for the benefit of the typical reader/viewer. They are there for the benefit the reader/viewer whose circumstances are less than typical.

Many people struggle with life for a variety of reasons, beit temporary, medium term or for their entire life. Some people will, from time to time encounter that proverbial straw that breaks the camel’s back causing anguish, despair, a breakdown, a relapse, or even contemplating whether or not life is worth the struggle. I cannot know the circumstances of my readers so I shouldn’t presume that none of them are facing difficulties that are stretching them to breaking point. I would not want to be knowingly responsible for loading them up with that proverbial straw, at least without giving them the opportunity to decline it. I’ll attempt an analogy.

Imagine you come across a cafe you haven’t seen before and decide to go in for a Flat White (or whatever your favourite hot beverage is). You’re about to take your first sip when there’s an extremely loud bang that startles you and you spill some coffee onto your lap. After you recover you notice no one else in the cafe has reacted as you did. It turns out this particular cafe fires a cannon on the hour throughout the business day, and regulars are aware of this. On the other hand you weren’t. If you had been warned before purchasing your coffee, you would have been forewarned and could have chosen whether to stay or go elsewhere.

Which would be more reasonable: (a) to provide a warning at the entrance, or on the drinks menu on the wall that a cannon is fired on the hour, or (b) to be told that you need to put on your big boy/big girl panties and deal with it when you complain that the cannon fire caused you to spill your coffee?

What triggers me about comments such as “deal with it” is that it’s a situation I find myself in regularly. I’m autistic and my ability to communicate in a way that non-autistics demand is not always successful. I can communicate perfectly well – with other autistics or with people who are prepared to meet me part way. Communication is a two way street, yet I, and other autistics, must bend over backwards to conform to the confusing, chaotic and illogical communication style of non-autistic people. All. The. Time.

It’s uncomfortable, unpleasant and exhausting, and frequently in social situations I find it necessary to escape, at least temporarily, to avoid shutting down. Such escapes are often considered rude, anti-social, inconsiderate or arrogant, and when I explain why it’s necessary I’m informed that no one else has a problem and I need to learn to “deal with it”. Why is it that they don’t ever need to learn to “deal with it” – the fact that I need to take frequent breaks during social activity?

Seldom, if ever, is there an attempt by neurotypicals to make any accommodation for the needs of autistics. Who’s lacking empathy? According to popular mythology, including much of the medical profession, autistic people lack empathy. I would argue no more so than non-autistic people do. In fact there is a growing body of evidence that suggests autistics may actually be highly empathetic, but expressed in a way non-autistic people can’t even recognise, let alone understand.

When needs are not met, people suffer. If you are irritated when empathetic people try to accommodate the needs of others by way of trigger warnings, you’ll not get any sympathy from me.

Arresting Ableism; Insight and Experiences of a Nonspeaking Autistic — NeuroClastic

Inside my mind there are a myriad of thoughts about the way autism is perceived and how autistic folk are treated. I have more than a dozen drafts on this subject that I am unable to complete as every time I try I feel a churning in my stomach and my thoughts fly in all directions – so much so that I can not organise them into paragraphs, sentences and words. I don’t know what that churning represents – anger, frustration, impotence – perhaps all of these, perhaps something entirely different. What I can say is that it makes me very uncomfortable, even more so when I’m unable to articulate what I really want to say.

Is is because I lack the language skills necessary to express myself adequately, or is that words themselves are incapable or expressing what I feel? I don’t know. But I do know when someone can articulate what I feel. The following article by Sabrina Guerra, a non-speaking autistic, speaks volumes quietly. Her specific experiences are different from mine, and yet (to use a Quaker phrase) she speaks to my condition.

Wisdom doesn’t flourish impeded by people’s egocentrism. Supremacy reigns unless we fight diligently to educate. Question all that you’ve ingested on a human’s worth. When the rights of abled people take precedence over those of disabled people, our great shame is evident, and we must not consider ourselves a modern, progressive society. I am passionate…

Arresting Ableism; Insight and Experiences of a Nonspeaking Autistic — NeuroClastic

STOP Autism Research (There’s a BETTER Way)

The video says it all. There’s nothing more I need say. (Turn on closed captions if you have a hearing disability)

We All Need to Work More Autistically — Autism and Expectations

I, and I suspect many others on the autism spectrum, have found alternative forms of communications forced on society by the current pandemic less threatening, more comfortable and less open to miscommunication (from my perspective) than the usual face-to-face forms of communication that most neurotypical people engage in. As the post I’ve linked to below discusses, the way autistic people typically communicate can be advantageous even to those not on the spectrum, especially in the “new normal” that’s likely to be around for some considerable time.

The other day I was at work and was hit by a revelation. It had been nagging at me for a while – I could feel that something had shifted. But I never would have predicted that I would be facing the world of work with a social advantage due to my autism. I’ve had […]

We All Need to Work More Autistically — Autism and Expectations

Countdown towards a ban of all forms of conversion therapy — Autistic Collaboration

ABA is perhaps the best known “therapy” for autistic people – especially autistic children, but it’s still conversion therapy, and is just as harmful in the view of many autistic adults. What is less well known is that this form of “treatment” for autistics is the basis of all forms of conversion therapy, and now widely condemned in other fields. Unfortunately people who are autistic can still be subjected to electric shock “therapy” in order to make them appear less autistic (a recent SCOTUS decision means it still continues in America). All conversion therapy is cruel and inhumane, and I don’t care whether it’s in the “treatment” of those in the LGBTQI+ community or the neurodivergent community. It must stop!

Today we have presented our submission to the government’s Conversion Practices Prohibition Legislation Bill. From today we will will start counting the days until all forms of conversion therapies are banned in Aotearoa New Zealand. Our hope is that this page will only need to be appended a few times with further activities to remind…

Countdown towards a ban of all forms of conversion therapy — Autistic Collaboration

Not knowing what you don’t know.

Lyric Holmans has released a Youtube clip explaining why she finds people overwhelming. You can view the clip and read a transcription on her blog. Like her, I find people can be overwhelming, and the reasons are similar – non-vocal communications.

While humans may be the only species to have developed a language, all vertebrates and many invertebrates communicate in various ways with their own species, and to a lesser extent other species. And while non-vocal communication may take second place to spoken (or written) communication in humans, it remains an important factor in our everyday communications.

For the first 60 years of my life, I was totally unaware that language (spoken or written) was complemented by other forms of communication, namely body language and facial expressions. I’m not alone. Many people don’t realise that body language exists, but nevertheless, they use it and read it every day. It’s instinctive to them. For many autistics, including myself, its not. Hence the title of this article.

During those first 60 years, I was able to read body language in domestic pets – better than most people in fact – in babies and to a lesser extent, toddlers. But apart from the way lips form with a smile or laughter I was unaware that the face, especially the eyes, can convey a whole raft of emotions and ideas. Even so, I was unable to distinguish between a grin and a grimace. I was completely unaware that humans also used posture, movement of body and hands, even vocal pitch and volume to supplement the words they use.

Now that I do know that a significant part of human communication is non-vocal, I’m able to look for it, and that in itself can be overwhelming. In the first place, making a conscious effort to look for non-vocal communication requires effort, so much so, that sometimes I forget to listen to the actual words being spoken. And then I’m always asking myself whether or not a particular facial or body movement is indeed intended (intentionally or not) to communicate something. And if it is intended to communicate something, what exactly?

I managed to survive the first sixty years of my life, more or less intact, not knowing that body language and facial expressions play a vital role in interpersonal communications. I’m yet to be persuaded that knowing it exits at all, let alone its importance, makes my communication with others, as individuals or groups, any less overwhelming. In my case it might actually make it more so. Group dynamics is another mystery to me (Lyric touches on it in the post linked to above), but that’s a topic for another day.