Over recent weeks I’ve had a few more migraines than is typical, and as a result, I missed attending some events I had been looking forward to – including the Kimbolton Sculpture Festival. Kimbolton is a tiny rural settlement (population around 250) approximately 40 minutes drive from my home town of Feilding. This year the festival attracted almost 5000 visitors. Somehow seeing it via YouTube just isn’t the same.
A gallery of award winning sculptures can be found at https://www.ruralart.nz/gallery. Terry the Bull, made from recycled tyres is, in my view, the well-deserved winner of the NZ Rural Sculpture Award and the People’s Choice Award.
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.
For America and Americans there isn’t any, but for us in Aotearoa there is an upside. Especially when it comes to women’s health. The reality is that in America, and especially in the conservative south, many professionals working in women’s health live in fear – fear of being shot, fear of their work places being bombed, fear that their families might become targets for anti-abortion extremists. Who would choose to live like that? If enquiries from American health professionals to New zealand recruitment services are anything to go by, many have chosen to seek safer pastures.
For many decades, Aotearoa, like many smaller nations have have been the happy hunting ground where large American and European health organisations poach health professionals by offering eye watering salaries way beyond our capacity to pay. We simply don’t have those resources. As a consequence this country is critically short of medical staff in practically every field. And covid has only made thing worse with staff often working beyond the point of exhaustion. But perhaps the tables are about to be turned.
While I have the deepest sympathy for American women who have had their bodily autonomy stolen, I’m grateful that as a consequence of Roe vs Wade, many qualified and experienced health professionals are looking for alternative places where they can practice what they have been trained to do without fear of imprisonment and without fear for their safety, the safety of their families, safety in their place of work and safety for their patients. Many are seeking to make a new, safer and more balanced life for themselves and their families here in Aotearoa. We benefit by a reduction in our critical shortage of health professionals. Everyone wins (except for America and its women).
The YouTube video below is from Sunday, a weekly documentary series shown on TVNZ’s ONE channel. This episode describes the plight of American women seeking abortions in the south of America and also the plight of their health professionals. I can’t imagine living like that. I suspect this outside perspective of what America has become will be unsettling to many of its citizens, but I also suspect that those who should see it will be the last to even consider watching a foreign documentary. That’s what religious and political intolerance does.
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.
Blogging has almost become a way of life. While I don’t spend all that much time creating posts of my own, I do spend considerably more time reading and commenting on other blogs. Over the past month or so I have spent much less blogging time than has become the norm. The most significant factor for this is a semi-persistent low level migraine.
But if you prefer I not go into details. stop reading any further and simply enjoy a few of the flowers on display in our front garden at the end of September and beginning of October. This year the spring equinox weather has been more varied and extreme compared to the typically variable and fickle weather and strong winds usually experienced at this time of the year, ranging from the extremes of winter to typical summer weather with the space of a few days and then back again! Our garden has suffered as a consequence, but still there is much to enjoy:
Migraines are funny things. One can look up textbook definitions of the various types of migraines, but in reality few migraineurs fit tidily into such definitions. In this regard, I’m no different. My migraines have been described at various times as migraine with aura, hemiplegic migraine, chronic migraine, acute migraine, vestibular migraine, complex migraine, migraine with brainstem aura, acephalgic migraine, and atypical migraine. But from personal perspective, it’s what I experience rather than what others observe that really matters, and in this regard, they are are all much the same, varying only in the intensity of various aspects of the disease.
The one thing I am grateful for is that as I have aged, the extremely painful throbbing headache that is often associated with migraine has become infrequent as have bouts of nausea. I appreciate that many people assume a migraine is just a painful throbbing headache with some nausea thrown in for good measure, and for some people that is what a migraine is, but for a significant minority of migraineurs these are the least significant aspects of their many symptoms. It is for me.
So what have I been experiencing over recent weeks that have kept me out of the blogosphere?
While not a particularly “scientific” term, brain fog does describe what I experience with most migraines. It affects cognition. It’s hard to describe precisely as it affects the very skills one needs to be able to accurately recall one’s experience. Perhaps it can be described as feeling distracted continuously, being unusually forgetful, and finding it difficult to complete even simple tasks. I may find it difficult to recall what a word means or being unable to locate the correct word to use. Sometimes I might be able to understand individual words but not be able to comprehend a sentence made up of those words, and at times I may not be able to string a sentence together that is understandable to others.
Brain fog often results in short term memory loss. I can start reading or writing a paragraph, but by the time I reach the end of it, I have forgotten how it started, and have to read it again. In a worse case scenario, I simply give up as I’m unable to get the gist of a single paragraph, let alone several in sequence.
Not being entirely in the here and now means that some tasks such as driving are particularly dangerous. Being unable to concentrate may mean I do not detect potentially dangerous circumstances until too late., and even then, may not be able to choose the most appropriate (or indeed any) action to take. At least these days I am aware that I have brain fog – something that didn’t always register only two decades ago. Mindfulness training has helped in this regard. So I do know when I shouldn’t drive, much to the Wife’s frustration as she prefers being a front seat passenger even though she can drive.
Every migraine I experience affects some aspects of my vision. One of the most frustrating aspects is the inability to see clearly. It’s rather difficult to describe, and while sometimes what I see can be blurry, as in being out of focus, sometimes it’s not a focusing issue, but the inability to process what I see. One way for you to grasp what I mean is to fix your gaze on one word in this paragraph and while doing so try to read the words above, below, to the left and right of it. Difficult, right? And words even further away get progressively more difficult to read, and outside a very small window become impossible to read even though you know they are there. Well, for me during a migraine the best I can see is that word one or two away away from the one you have fixed your gaze onto.
Other common visual disturbances I experience can be seen in this next video clip where, through a virtual reality headset, others experience realistic simulations of what a migraine with aura looks like to the sufferer:
Other visual disturbances include blind spots. By this I don’t mean small areas that are blank, but a functioning area of the brain “fills in the details” for another area that isn’t functioning as it should. For example I may check the time by looking at a wall clock, but the clock appears to have vanished. All I see is the wall and there doesn’t appear to be any blanks spot at all. However if I move my eyes away from there I expect the clock to be, it suddenly appears, as if by magic. What has actually happened is that I do in fact have a temporary blind spot, but another part of the brain recognises the pattern on the wall and reconstructs it to fill in the blind spot. We all have a small blind spot where the optic nerve leaves the eye, and we all have the neurology where a part of the brain fills in the missing details by “filling in the gap”, but usually we’re unaware of it occurring at all.
These are many and varied. They go from the simple such as finding it difficult to write legibly or tie shoelaces (hence most of my shoes having velcro fasteners) through difficulty with speech and balance (giving the appearance of being drunk) to hemiplegia where the right side of my body, especially the face and arm, but to a lesser extent my leg, lose strength and fail to respond unless I make a conscious and determined mental effort to control them, and then only clumsily.
Over the past month none of the aforementioned symptoms have been at their worst. In fact each symptom has by itself has been barely noticeable to others, but when so many conspire to be present at once, even in “mild” forms, the net result is a person who is unproductive, however that term is understood, and unmotivated, and when pushed to do something, performs it badly. Such is life.
The USA is fast becoming fundamentalist Christian right nation, and that includes laws passed at local, state and federal level. My limited understanding of the US constitution is that it prevents the establishment of religion, but doesn’t prevent the passing of laws that support and/or enforce values of one specific religious viewpoint over other viewpoints. And that specific religious viewpoint is without doubt that of the fundamentalist Christian nationalist right. That is no more evident that the proposed “Protect Children’s Innocence Act” introduced by none other than Marjorie Taylor Greene, that does exactly the opposite of it’s title suggests and will cause considerable harm to the minority that this bill is directed against.
The opening section of MTG’s despicable bill On Saturday, I published a blog post containing the text of Marjorie Taylor Greene’s bill for a ‘Protect Children’s Innocence Act’, whose chief stated purpose is ‘ 2,802 more words
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.
A few weeks ago we decided we take The Cat, aka Puss, to the vet for a health check. Although she seemed to be in good health, there was the question of whether or not she had been spayed, and whether she needed vaccinations and flea and worm treatment. So we hired a cat transport cage and took a very indignant cat off to the vets.
We came back with Frankie, and he is a desexed three year old purebred Chinchilla born in the Wairarapa, several hours drive from Feilding. No we didn’t swap felines. It turns out that Puss, is Frankie, micro-chipped and he lives lived at the opposite end of our street. He was on the vet’s books and was last seen only three months previously for flea and worm treatment. So the vet contacted the guardians of Frankie (they don’t use the term “owner” for companion animals, and besides, does anyone really own a cat?).
Within ten minutes, Frankie’s official guardian was in the veterinary consulting rooms. She was a very nice woman and she and her family had been quite concerned for Frankie’s wellbeing. Since they obtained him as a kitten he has been spending more and more away from home, and over the last year or so he’d return perhaps once or twice a week to sample his food and then disappear again. Once she learnt that Frankie spent most of his time at our place, she agreed that it was probably in Frankie’s best interest if we took over guardianship,
We’ve noticed that Frankie likes quiet (a trait quite common with the chinchilla breed), and after learning what his previous domestic life was like, it’s hardly surprising he sought out an alternative home. His previous home consisted of two adults, three pre-teenage children, two dogs, and another cat who thoroughly disliked Frankie and make that very clear at every available moment, plus an assortment of poultry and goats.
So we became the official guardian of Frankie, and after he received his annual vaccination and quarterly flea and worm treatment, we brought Frankie home with us. And here he remains. Occasionally he might disappear for an hour or so, so perhaps he might visit his old home on some of those occasions, but now he’s well and truly settled in having laid claim three spots as his own: the deck chair on the main front balcony where he can observe the street below, an armchair in the lounge, when the weather makes the desk chair less than ideal, and on top of a pile of duvets and quilts on a spare bed in an upstairs bedroom, the dormer windows from which he can purvey his kingdom and watch birds cavorting on the roof outside.
The bedroom is one I frequently use so as not to disturb the Wife – I’m a restless sleeper at the best of times but restless leg syndrome (Willis-Ekbom Disease – a condition I inherited from my mother and which has progressively intensified over the last fifty years) keeps not only me awake, but also the Wife. On such occasions I move to the other bedroom and Frankie moves from his pile of duvets and snuggles up against my chest and/or neck keeping well away from my constantly moving legs.
Frankie may have a pedigree, but his fur has “cosmetic faults” that make him “pet quality” rather than “show quality” or “breeder quality”. He has a long and luxurious coat, which he manages to keep well groomed all by himself apart his chest area between his front legs, and his lower neck, which I discovered is prone to matting and tangles, big time. Now that most of the matting has been removed, Frankie has learnt to guide my hand to that area with his paws as I brush him. We now spend ten to fifteen minutes, several times every day carefully grooming his chest and throat, even though it obviously hurts at times.
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. 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. 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.
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…
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