Yenn has some very good points about how ableists treat people with disabilities – often in ways that are infantilising insulting or demeaning. I don’t view myself as disabled, but there are certainly times when society effectively disables me. Unfortunately many fully-abled people don’t realise how ableist their words and actions can be…
I recently had an unpleasant experience where a person gave me a hard time for using the accessible seat on the bus. I need to have two seats to myself due to sensory and proximity issues related to my autism. Apparently – according to this person – I didn’t ‘look disabled enough’ to use this […]
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.
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…
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?”
April is Autism Awareness month, and today, Saturday 2nd 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.
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…
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…
Summer is just a few days away. In this part of the world summer “officially” starts on the first day of December. I’m already looking forward to late autumn.
A characteristic commonly shared amongst autistics is hyposensitivities and hypersensitivities when compared to non-autistic folk. Depending on the senses involved being hypo or hyper can be an blessing or a curse. For example I’m mostly oblivious to low and moderate levels of pain. It’s not until it reaches the level one experiences of momentary pain when slamming a car door on a finger, or the ongoing pain when the body unsuccessfully attempts to eject kidney stones, or when attempting to move muscles affected by polio that I experience “real” pain. Breaking my arm or gashing my foot exposing the bones resulted in curiosity about the outcome more than any conscious sense of pain. In fact I experience more pain from the noise of a typical shopping mall or from lighting effects commonly found in modern forms of entertainment.
I do not like warm weather. I have a narrow band of “comfortable”. Below 18℃ (64℉) I start to feel the chill, while anything above 24℃ (75℉) feels unpleasantly warm. As I age, the level of discomfort I experience increases when the temperature goes outside my comfort zone.
As temperature drops, it’s a simple matter of adding an extra layer of clothing to maintain a level of comfort although I have to be careful to avoid spontaneous “attacks” of Raynaud’s syndrome in my fingers and/or toes, which can be very painful as the symptoms wane. Coping with heat is a different matter.
Take today for example. Our indoor/outdoor temperature gauge, shows the outside temperature as being 27.2℃ (81℉) in the shade and inside as being 26.4℃ (79.5℉). I find myself extremely restless, pacing about aimlessly, unable to concentrate much on anything apart from wishing it was cooler. If I had my way, I’d close the windows and doors and switch on the heat pump, and allow it to maintain its default setting of 22℃ (72℉) as it does during the colder months of the year.
Unfortunately The Wife has other ideas. She relishes such temperatures. My suggestion that we turn on the heat pump resulted in a very emphatic “No!” What happened to so called neurotypical empathy? So in order to maintain domestic harmony I find myself wandering aimlessly about our home, keeping out of her line of sight as she finds my pacing “annoying”.
Postscript
The Wife acknowledged my efforts not to annoy her in my discomfort and provided the perfect meal for a day such as today – somen (cold Japanese noodles).
Back in the late 1960s I was a young adult, still in my late teens, but unlike most of my peers I had no friends or social life – in fact I found interaction with typical teens and young adults perplexing and at times terrifying. I had no dreams or aspirations, but no regrets or fears either. I simply existed. My life was quite empty.
In hindsight, this seems to be to fate of many young autistic males, although it would take more than another forty years before I was to discover that I am autistic. I wasn’t unhappy, but being a social outcast, and knowing one is but not knowing why did create a longing that I vaguely felt somewhere within.
I have quite high levels of alexithymia and aphantasia. I lack an awareness of emotions in others and myself, and I am unable to conjure images in my mind. This is where music comes in. Some music causes me to feel what I assume to be emotions. Occasionally music may stimulate a vague mental image. Very rarely a piece of music may do both. This cover version of Mr Tambourine Man by Melanie (Safka) is one such piece.
I’m not sure exactly when the cover version of Mr Tambourine Man by The Byrds landed on the hit parade, but I guess it was around 1965 or 1966. I had no interest in it at the time, and still don’t. Then at the end of 1968 Melanie released her cover version on her album Born To Be. I definitely took notice of that version. I could feel the hair in the back of my neck rise, especially as she sings the last verse starting from “And take me disappearing through the smoke rings of my mind“,
It’s an imagery I can actually see, albeit as a black silhouette on a misty grey background or perhaps as a monochrome sand painting or perhaps as a slightly abstract pen and ink drawing. It’s difficult to describe as I can only see it while the song is being played. I can see the frozen leaves and the haunted frightened trees. I even sense the fear of those trees.
When I first heard Melanie sing the words “With all memory and fate driven deep beneath the waves let me forget about today until tomorrow“, I felt an instant connection. Perhaps I was a recognition that my life at that time was one of near solitude and I needed more. Whatever it was, there was a connection to the song and the singer in a way that I had never felt before. And still today, more than fifty years later, Melanie’s version of this Bob Dylan song moves me like no other does.
Enjoy!
Mr. Tambourine Man, sung by Melanie, composed by Bob Dylan
Lyrics to Mr Tambourine man composed by Bob Dylan
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
Though I know that evening's empire has returned into sand
Vanished from my hand
Left me blindly here to stand
But still not sleeping
My weariness amazes me, I'm branded on my feet
I have no one to meet
And the ancient empty street's too dead for dreaming
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
Take me on a trip upon your magic swirlin' ship
My senses have been stripped
My hands can't feel to grip
My toes too numb to step
Wait only for my boot heels to be wanderin'
I'm ready to go anywhere
I'm ready for to fade
Into my own parade
Cast your dancing spell my way
I promise to go under it
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
Though you might hear laughin', spinnin' swingin' madly across the sun
It's not aimed at anyone
It's just escapin' on the run
And but for the sky there are no fences facin'
And if you hear vague traces of skippin' reels of rhyme
To your tambourine in time
It's just a ragged clown behind
I wouldn't pay it any mind
It's just a shadow you're seein' that he's chasing
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
And take me disappearing through the smoke rings of my mind
Down the foggy ruins of time
Far past the frozen leaves
The haunted, frightened trees
Out to the windy beach
Far from the twisted reach
Of crazy sorrow
Yes, to dance beneath the diamond sky with one hand waving free
Silhouetted by the sea
Circled by the circus sands
With all memory and fate
Driven deep beneath the waves
Let me forget about today
Until tomorrow
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
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.
For a great many of us on the spectrum, Autism Awareness day/month in April is less than helpful especially in the form promoted by Autism Speaks – a “support” organisation that definitely does not speak for Autistic people. Instead, Autistic Pride Day (June 18) is the day to show the world we are not inferior but just equal and different. I might have something more to say on the day that is more relevant to my personal experience, but here is a post by Yenn Purkis that I believe most neurodivergent people (not just autistics) can relate to.
Friday June 18 is Autistic Pride Day so I thought I would write a blog post all about autistic pride. Sometimes people say ‘why would you be proud? You can’t help being autistic. It just is.’ I think for members of marginalised groups, like Autistics, pride is a political act and a way of asserting […]
Another Spectrum 
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