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.

Scary stories

Halloween was a few days ago. It’s an event I ignore. It didn’t exist in Aotearoa when I was growing up and personally I’d be happy if it remained so today. Thankfully, our current home has not been visited for Trick or Treating since we moved here 16 years ago. Perhaps it’s the unlit, tree lined zig-zag path that leads to the front door that puts kids off. Whatever the reason, it means I don’t have to pretend that Halloween is fun.

Halloween has brought up the topic of how folk with aphantasia (the inability to visualise mental images), such as myself, react to scary stories. Apparently we don’t. It might explain why I had no interest in sharing scary stories as a child. According to a Royal Society Publishing article the fear induced while reading or hearing a scary story relies on being able to create a mental image of the situation/event being described. No image, no fear.

The study measured skin conductivity of subjects while being presented with a scary or frightening story such as being in an aircraft as it crashed, or being trapped in a room full of spiders that then begin crawling over you. It’s well established that strong emotions are linked to skin moisture – the stronger the emotion, the wetter the skin becomes, lowering its electrical resistance. The control group showed significant increases in skin conductivity during the presentation of the scary stories but the aphantasiacs “flatlined” showing no change in emotions.

To check whether aphantasiacs lacked emotional responses, subjects were also presented with scary images. Both the control group and those with aphantasia showed identical responses. The study indicates the there is a close relationship between visual imagery and emotions. Both the control group and aphantasiacs presented the same emotional reactions when presented with real images, but only the control group did so when no images were presented as they were able to create the mental image of the story whereas those with aphantasia could not.

Around 2% – 5% of the general population have aphantasia, while it’s estimated that 20% – 30% of autistics are also aphantasiacs. Most people with Aphantasia don’t realise that they have it unless they are tested specifically for it. I only discovered I have aphantasia in my mid 60s – around six or seven years ago. It might go someway to explain why I have difficulty identifying faces –even of those nearest and dearest to me. Perhaps it might also explain why I find little to no attachment to fictional situations, but slightly more so when I see it on a TV or movie screen.

Aphantasia is another one of those neurological differences where those with the condition are frequently described as suffering with/from the condition, in much the way autistics are often described as suffering from autism. If you are guilty of this, just stop it! Neither autism nor aphantasia cause suffering in and of themselves. Any suffering comes from how others disbelieve, devalue, ignore and gaslight the experiences of those with these conditions, and worse when we are punished because others perceive our responses to our experiences as being wrong.

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

Press Release: Judge Rotenberg Center Threatens NeuroClastic with Defamation Suit — NeuroClastic

I am autistic, and over the 12 or so years since I discovered the truth about myself, I have come to the position where I can state that not only I am autistic but that I am proudly autistic – I am an Autist. After first coming to terms with my neurology, I have gradually become more and more aware of how autistic people are treated worldwide – Abysmally, and often horrifyingly. Treatment such as the administration of powerful electric shocks that are deemed inhumane when applied to animals, terrorists or criminals is, apparently okay when applied to autistic people, and in some places permitted by law! This includes the state of Massachusetts in the USA, where the Judge Rotenberg Center (JRC) subjects disabled and/or autistic children and adults to GED electric shock “treatment”.

Trigger Warning: description of abuse and torture. Read the terrifying experience of one JRC survivor on Aspiesforfreedom’s Blog

The Judge Rotenberg Center (JRC, founded in 1971 as the Behavior Research Institute) is an institution in Canton, Massachusetts, United States, housing people with developmental disabilities, emotional disorders, and autistic-like behaviors. The center has been condemned for torture by the United Nations Special Rapporteur on Torture. The JRC is known for its use of the graduated electronic decelerator (GED), a device that administers electric shocks to residents through a remote control. The device was designed by Matthew Israel, the institute’s founder.^[1] While the FDA issued a formal ban on the GED in 2020, the device continued to be used on some residents pending an administrative stay for the duration of the COVID-19 pandemic.^[2] In July 2021, the D.C. Circuit Court of Appeals ruled that the FDA could not issue a “partial stay” but must issue a blanket ban or no ban at all, thus allowing the JRC to continue subjecting 55 people to shock in the meantime.

Judge Rotenberg Educational Center – Wikipedia

The article linked to below deserves to be read by every human rights advocate, especially in light of the attempt to stifle the voice of criticism by the very people who are affected the most – Autistic people.

For decades, the Judge Rotenberg Center (JRC) in Canton, Massachusetts, has been using graduated electronic decelerators (GEDs) to shape the behaviors of children and adults. The GED delivers a powerful and extremely painful electroshock and is worn by students 24 hours per day, every day— even during sleep and showers. The GED looks like a…

Press Release: Judge Rotenberg Center Threatens NeuroClastic with Defamation Suit — NeuroClastic

Are you Aprilness-aware? — transponderings

It’s still (just) April in parts of the western hemisphere and I’ve only just now stumbled across this (in my opinion) well written article, so I have no hesitation in reblogging it at this point in time. Anna writes what I have felt for some time but have been unable to put my thoughts together on this matter. Thank you Anna for explaining what I feel deeply.

It is, thankfully, nearly the end of another month with Aprilness. Another Autism Awareness Month – or as the ever-so-slightly-more enlightened have started to call it, Autism Acceptance Month. These are not labels chosen by the Autistic community (and I use a capital A here intentionally). This month of awareness- or acceptance-raising isn’t something any of us asked for.

Are you Aprilness-aware? — transponderings

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!

Legislative diversity

I started this post way back in November 2020 shortly after the General Election, but never quite got round to completing it. I wanted to make the point that some sections of society are still excluded from decision making processes that affect them, but as often happens for me, it morphed into something no quite as I intended. So it’s been sitting on the shelf until I decided what to do with it. I’m still not sure if it’s worth publishing, but it’s either that or bin it. I’ve chosen the former.

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It’s a fact of life that most legislatures around the world are scarcely representative of the population they represent. For example, in most western democracies, wealthy males with sometimes tenuous connections to Christianity are over represented, while women, minority groups of all types and youth are underrepresented.

For some, this is the “natural order” and they see nothing wrong or untoward with this situation. Others keenly feel that in order to have all voices heard, it is necessary that diversity in the makeup of the legislature should approximate that of the community from which it is drawn. I lean towards the latter. But it would seem that most people here have no opinion one way or the other in this matter. Perhaps in this nation it might be understandable, but is it desirable?.

Disability

Aotearoa New Zealand does better than many other nations when it comes to diversity within its legislature, although we still have a long way to go. One example would be that approximately one on four or one in five Kiwis (depending on the measurements chosen) have some form of disability but no MPs (Members of Parliament) have publicly admitted to having a disability.

Neurodiversity

Of special interest to me is that although somewhere between 5% and 12% of the population is neurodiverse (depending on how you define neurodiversity), as far as I can discover, no MP is neurodiverse.

Ethnicity

People of asian ancestry, most of whom are of Chinese or Indian descent are also underrepresented. They make up 12% of the population but only 7% of the Parliament.

In the October Elections, fewer Māori were returned to the Parliament than in the previous two general elections. In the Previous Parliament, 23% of MPs were Māori. This has now dropped to 21%, but remains higher than the 17% of the general population who identify as Māori. Pasifika people (those from Pacific island nations) too, while making up 7% of the general population, make up 9% of MPs.

Gender

Women have almost reached parity with men. In this country females slightly outnumber males (100:97), and now make up 48% of all MPs. When compared to our neighbours (Australia 31%, Pacific nations averaging 6%) we are doing very well. When we look at gender representation by political party, we see that the parties of the left have more female representation than male, while for parties on the right, the opposite is true.

LGBTQI+

Approximately 4% of Kiwis are openly LGBTQI+ although the real number is most likely higher. Parliamentarians are more forthcoming in this regard as 11% of MPs are openly LGBTQI+. This lead to one British tabloid headlining an article with “NZ Parliament Gayest in World”. Although this nation was the first where an openly transgender person was elected to the national legislature, there are currently no openly trans MPs.

Religion and spirituality

I’m not going to attempt to define what religion or spirituality are as even academics in these fields cannot agree. In fact some definitions are mutually exclusive. In the NZ context it can be confusing. Around a third of the population claim a Christian affiliation, and only 45% of the population claim any religious affiliation according to the 2018 census.

Other surveys indicate that 25% have a firm belief in a deity or higher power and a further 45% believe in some form of higher power to some extent for at least some of the time. Within the Christian community the concept of God ranges from an omniscient omnipotent being to metaphor/personification/symbol representing our highest ideals, and the trend is towards greater polarisation of these opposing concepts.

The consensus among both the religious and non-religious alike is that New Zealand is one of the most secular nations on this planet. Whether one is religious or not, or is affiliated to a religious or spiritual group is usually a private matter, and that applies to politicians as much as it does to the general population.

This makes comparing the religion of the legislature and general population somewhat difficult as the religious beliefs of most MPs is not on public record. However, anecdotally it does appear that parties on the right have a slightly higher proportion of “religious” however that might be defined, than parties on the left. Based on the limited amount of information available, it appears that religion and spirituality amongst MPs is not significantly different from the general population.

Youth

While we do have some MPs in their twenties, and in the past a few have been in their late teens, I suspect this is one form of diversity where the “nature of the job” will means that the young and the old will always be underrepresented. There is a small movement calling for the voting age to be lowered from 18 to 16, and if it ever came to a referendum I’d support it, but for the time being only the Greens consider it a topic even worthwhile discussing.

Quotas

I’m not in favour of quotas to ensure all forms of diversity are proportionally represented, and yet our electoral system (MMP) is based on the premise that political parties should be represented in parliament proportionally based on their support in the voting population. Isn’t this a form of quota based on political affiliation? If we demand proportional representation across the political spectrum, why not across other spectrums of society?

I believe that legislatures should reflect the diversity of those who elect them, although not necessarily in exact proportion to the population. For society to be truly inclusive, everyone should feel that their voice can be heard. For those with a disability and for the neurodiverse, there’s clearly a long way to go. We should be proud of our success in achieving the diversity we have in the Parliament, but let’s not rest on our laurels just yet.

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

Open letter to the Lancet Commission on the future of care and clinical research in autism — Neurodivergent Rebel

Up until very recently, autistics have been excluded from the field of autism research apart from being subjects. Research by, and input from autistics has largely been ignored, and the interpretation of research data has been largely in the hands of non-autistic researchers. Gradually, ever so slowly, there’s the beginning of the realisation that neurodiversity is not a pathology, but part of the natural diversity of the human species. And in this respect it’s pleasing to see the Lancet Commission on the future of care and clinical research in autism is recognising that autistics should be collaborators instead of just subjects.

However the Global Autistic Task Force on Autism Research (a committee comprising autistic advocates, researchers and representatives of organisations by and for autistic people) has identified areas where there are shortcomings leaving autistics marginalised once more. I thank Lyric for bringing this to my attention, and I urge everyone to consider carefully the concerns expressed by the task force. I will do my bit by letting the Lancet commission know my views.

I STRONGLY URGE others to publish, share and cosign the original message below as I have done, as well as send a message to Lancet. We wish to address the Lancet Commission on the future of care and clinical research in autism on behalf of the Global Autistic Task Force on Autism Research, a committee comprising autistic…

Open letter to the Lancet Commission on the future of care and clinical research in autism — Neurodivergent Rebel