Unspoken Turns

I’ve always struggled with knowing when it is my turn to speak. I wrote about it six years ago in my post To speak or not to speak, that is the question. An event several weeks ago drove home to me quite forcefully that I still find the art of conversation elusive – very elusive. It was frustrating enough for me to want to write about it, but try as I may it didn’t convey the frustration that I felt. I enlisted the help of Copilot, but I still couldn’t get away from the article seeming like a ball-by-ball play of the situation instead of being about how I felt. After a lot of back and forth conversation, Copilot suggested a poem might be a better platform for expressing how I felt. So after an hour or so of collaboration, here’s the final result. Let me know in the comments how the poem resonates with you.

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Unspoken Turns
In the crowded theatre of conversation, 
I sit, a silent actor on life’s stage, 
The script eluding my grasp, 
As others pirouette through dialogue.

To speak or not to speak? 
A riddle whispered by invisible muses, 
Their laughter echoing in my ears, 
As I fumble for cues, lost in the spotlight.

One-on-one, I stumble— 
Words tripping over each other, 
A clumsy waltz of syllables, 
And the lead remains elusive.

But in the ensemble of many, 
I am a fish out of water, 
Caught in the undertow of turn-taking, 
Gasping for air, seeking my moment.

To speak or not to speak? 
A soliloquy etched upon my soul, 
As I watch the choreography unfold, 
Wondering when my cue will come.

ESP or supernatural whispers? 
The others glide seamlessly, 
Their voices weaving patterns, 
While I unravel the threads of silence.

To speak or not to speak? 
A silent plea to the cosmic director, 
Who withholds the script, 
Leaving me adrift in this conversational sea.

And so, I observe—seven decades and counting, 
A detective of human interaction, 
Yet the clues remain cryptic, 
The secret handshake of discourse eluding me.

Next time you witness rudeness, 
An untimely interruption, 
Consider the hidden struggle, 
The desperate quest to belong.

For we, the speechless wanderers, 
Navigate your world with uncertainty, 
Our turns unmarked, our cues obscured, 
Yet yearning to dance in the spotlight.

Autism Speaks (but not for autistics)

Autism Speaks, despite its prominence as a major autism advocacy and research organisation, has faced significant criticism from autistic self-advocates. Let’s delve into the objections raised by the autistic community:

1. Viewing Autism as a Disease:
   • Autism Speaks was founded on the premise that autism is a disease that needs to be cured. Their original mission statement reflected this perspective.
   • Most autistic self-advocates emphasise that autism is not a disease but rather a natural variation in neurotype. We advocate for acceptance rather than seeking a cure.
2. Stigmatization and Discrimination:
   • By framing autism as a problem to be fixed, Autism Speaks inadvertently contributes to stigma and discrimination against autistic individuals.
   • This portrayal reinforces the idea that there is something inherently wrong with autistic people, perpetuating harmful stereotypes.
3. Lack of Autistic Representation:
   • Autism Speaks is primarily led by non-autistic parents of autistic children. This lack of authentic representation is a major concern.
   • Autistic self-advocates argue that an advocacy organisation without autistic voices is akin to a whites-only group addressing racism or a men-only panel discussing sexism.
4. “I Am Autism” Video:
   • One of the most criticised aspects is Autism Speaks’ “I Am Autism” promotional video.
   • In this video, autism is portrayed as an enemy, causing fear and perpetuating negative stereotypes. Many found it deeply offensive and dehumanizing.
5. Focus on Difficulties Over Possibilities:
   • Autism Speaks tends to emphasise the deficits and challenges associated with autism rather than celebrating the unique strengths and possibilities of autistic lives³.
6. Financial Allocation:
   • Critics point out that only a small fraction of Autism Speaks’ budget goes toward direct services for autistic individuals and families.
   • Less than 1/3 of 1% of their budget is allocated to the “Family Service” grants that fund services.
7. Autism Acceptance vs. Awareness:
   • Autistic self-advocates prefer a shift from mere awareness to autism acceptance. We advocate for understanding, inclusion, and celebrating autistic achievements.

In summary, while Autism Speaks aims to raise awareness and provide support, its approach has sparked controversy due to its framing of autism, lack of authentic representation, and focus on difficulties rather than possibilities.

Sources used in preparing this post:

• The Mary Sue: The Autism Speaks Controversy, Explained
• Psychology Today: A Reporter’s Guide to the Autism Speaks Debacle
• The Conversation: Autism advocacy and research misses the mark if autistic people are left out
• Autistic Self Advocacy Network: Before you donate to Autism Speaks, consider the facts
• Autistic Mama: 4 Simple Reasons I Don’t Support Autism Speaks
• Reporter Magazine, RIT: The Autism Speaks Controversy

Thoughts on autism, religion, culture and language and their intersections: Two communities

In the comments of yesterday’s post, Scottie asked me if there is any way he could provide support to the autistic community. I think it’s important for non-autistic people to listen to what we have to say, what our experiences are, and not dismiss our reality. One of the hurdles the autistic community has in getting our message out to the wider community is that our voice is often drowned out by a more vocal community – the autism community – and it has money and power on its side.

Before non autistics can really support us they need to understand the difference between the autistic community and the autism community. The autistic community and the autism community are two different groups of people who have different perspectives and goals regarding autism.

The autistic community is composed of people who are actually autistic, meaning we have a neurological condition that affects our sensory processing, communication, social interaction, and behaviour. The autistic community advocates for the acceptance and inclusion of autistic people in society, as well as the recognition of our human rights and dignity. The autistic community also celebrates the diversity and strengths of autistic people, and rejects the idea that autism is a disease or a disorder that needs to be cured or prevented. The autistic community prefers identity-first language, such as “autistic person” or “autistic”, rather than person-first language, such as “person with autism” or “person on the spectrum”. The autistic community uses the rainbow infinity symbol as a sign of pride and solidarity.

The autism community is composed of people who are not autistic themselves, but have some involvement with autistic people, such as parents, caregivers, therapists, doctors, researchers, educators, and advocates. The autism community may have different views and opinions on autism, depending on their level of knowledge, experience, and empathy. Some members of the autism community may support the goals and values of the autistic community, and respect the voices and choices of autistic people. They may use respectful language and symbols, such as the puzzle piece with a heart, to show their support and allyship This is the type of supporter we need.

However, the majority of members of the autism community tend to have a negative or paternalistic attitude towards autism, and see it as a problem or a burden that needs to be solved or managed. They may use harmful language and symbols, such as the puzzle piece without a heart, to imply that autistic people are missing or broken. They may also promote interventions or treatments that are abusive or ineffective, such as Applied Behaviour Analysis (ABA), conversion therapy, or bleach enemas. Some refuse to vaccinate their children, fearing autism more than the harm from diseases the vaccines prevent, and sometimes going to the extreme of calling for a ban on early childhood vaccinations altogether.

The differences between the autistic community and the autism community can lead to conflicts and misunderstandings, especially when it comes to issues such as diagnosis, education, health care, research, advocacy, and representation. Therefore, it is especially important for the autism community to listen to, and learn from, the autistic community, as we are the ones who have the lived experience of being autistic. The best way to understand autism is not by studying it from the outside, but by listening to the voices of those who live it every day.

Monster

A few days ago, several websites I follow reported a triple murder in Monroe Township in Ohio, USA. The authors and followup comments on the blogs described how heartbroken they felt and described the perpetrator as a monster. For a reason I couldn’t fathom at the time, I found I wasn’t able to like any of the articles nor the comments the articles attracted.

I have Alexithymia, which means I have difficulty identifying emotions in others and in myself, but I knew there was something about the story that made me uneasy. I found myself frequently thinking about the case, pacing about the house and having a physical ache somewhere in my gut. So I knew it was affecting me quite deeply, but I didn’t know why.

Initially I thought it might be related to the way such cases are reported and discussed in the media In the US compared to NZ. Publishing the identity of the accused, or information that could lead to their identity, or their relationship to the victims before their first court appearance is in most cases prohibited. And until the conclusion of a trial, information pertaining to most aspects to the case are limited to what is revealed in court. Certainly, the discussion in blog comments about the accused’s past history of violence made me very uneasy. But that difference applies to every NZ and US case.

Ultimately, that was not the reason. That came to me in the early hours of this morning. I live in a rural township with a population of around 15,000, and in the forty years I have lived here there have been three murder cases that I am aware of. One was a double murder suicide and another was the result of a family dispute. The third involved the murder of a child by her mother. This is the case that has been gnawing at me.

The murder took place around 1999, and as you can imagine there was a great deal of outrage when the community learnt that a child had been murdered, and when it was revealed that it was committed by the mother, the outrage, as in the Monroe murders, became even more evident. While the media could publish only the facts, the community grapevine had no doubt she was a monster.

For about a day.

In a town the size of this, rumours, speculation and gossip spread rapidly, and very quickly it became common knowledge that the murdered child was autistic, or as the gossip had it, “suffering from autism”. Overnight the mother changed from being a monster to someone deserving of pity and sympathy. Without even knowing the circumstances of mother and daughter, one could hear comments such as “It must have been so hard for her (the mother)”, “Being too embarrassed to go anywhere because your child isn’t normal must be very difficult”, and even “She (the daughter) is probably in a better place now”.

This occurred about ten years before I learnt I’m autistic, and my only understanding of autism was limited to Dustin Hoffman’s character Raymond from the film Rain Man, so my being autistic is not really relevant. Perhaps it’s my Quaker understanding of the absolute equal worth of every person, or perhaps I simply have an obsessive sense in fairness and justice, but whatever the reason I could feel my jaw tense and an ache in my gut every time someone said they felt sorry for the mother. I remained silent then, I don’t think I could now. The fate of the daughter seemed almost inconsequential.

And the court thought so too. The mother had been charged with murder, but the jury found her guilty of manslaughter even though she admitted the killing was deliberate. In her words “I wanted to set my daughter free”. The judge sentenced her to four years imprisonment, which was reduced to eighteen months on appeal. The starting point for manslaughter is seven years before extenuating circumstances are taken into account.

I’m not a believer in harsh sentences so I’m not going to comment on the eighteen month sentence per se, but the length of the sentence for the intentional killing of an autistic person relative to the sentences for intentional killing of other human beings. I see the killing as a deliberate cold blooded murder of an innocent person whose only “crime” was being autistic. People receive more harsh sentences for mistreating animals. Murder in Aotearoa carries a mandatory life sentence with a standard ten year non-parole period.

This is not an isolated case. This is the value our modern society places of people who are autistic. Invariably, when the victim is autistic, or is a person with high support needs, the murderer is so often portrayed as the victim, while the real victim is either forgotten about or held responsible for their own death. There is a real public perception that an autistic person is better off dead, and in case after case across the developed world, killers of autistic people receive minimal sentences – a proverbial slap on the wrist with a wet bus ticket.

There is a was a video on the Autism Speaks website where a mother talks about wanting to kill herself and her autistic daughter, and the only reason she didn’t was because she had two “Normal Children” who would be left without a mother. And she said it in the presence of that child while other adults present nodded and murmured in sympathy. That video was removed after protests by autistic adults. Is that really all we’re worth?

Additionally, Autism Speaks (an organisation that doesn’t actually represent autistics) refuses to condemn parents who murder their autistic children and apparently, according to this article, while they don’t advocate the killing of autistic children, they say parents should be allowed to have that choice. Calling that involuntary euthanasia would be dishonest. It’s murder, genocide even.

I don’t know the full circumstances of what happened at Monroe, but I really need to ask why he’s viewed as a monster while the killers of autistic children and adults are not.

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).

Things ableists say — Yenn Purkis Autism Page

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 […]

Things ableists say — Yenn Purkis Autism Page

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

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

Justice for Linden Cameron — NeuroClastic

There are many reasons why I’m grateful that police in Aotearoa New Zealand are not routinely armed and are trained in de-escalation techniques. The situation described in the linked article below is one. Linden was no danger to anyone other than possibly himself.

What I find unfathomable is how a description of a crying and yelling unarmed autistic became a “violent psych issue” involving the juvenile “having a mental episode” and “making threats to some folks with a weapon.” Is this another example of someone (or several people) in the communication chain confusing autism and a violent personality and expanding the situation to fit their narrative?

This very much looks like an example of “if all you have is a hammer, everything looks like a nail“. And it seems to be borne out by the police shooting Linden in the back as he attempted to flee in panic.

I can understand why the author advises against calling the police in a mental health crisis, and while that might be reasonable advice where police are armed, it’s not a situation we are confronted with in Aotearoa.

On September 4th, Linden Cameron was shot by police several times in Utah after a Crisis Intervention team was called, which was supposed to help him in a mental health crisis. The post Justice for Linden Cameron appeared first on NeuroClastic.

Justice for Linden Cameron — NeuroClastic