Not knowing what you don’t know.

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

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

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

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

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

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

The case for autistic pride — Yenn Purkis Autism Page

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 […]

The case for autistic pride — Yenn Purkis Autism Page

ABA Therapy and PTSD

Think about it: almost half of all autistic people who undergo ABA “therapy” suffer from PTSD. As a follow up to yesterday’s post on the abusive nature of ABA, I recommend reading the following article:

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The “New ABA” is still all about compliance.

I was called “unethical” by a professional colleague today.

The reason may surprise you—I said “ABA is abuse”.  My peer was naturally taken aback because they are an SLP-BCBA and “would never dream of abusing a child.” I always find this rebuttal interesting because we usually don’t hear about people walking around admitting to abusing people; even overt predators somehow convince themselves that they are helping their victim. The sanctimonious SLP-BCBA told me that it was the “old ABA” and not “new ABA” that was harmful, and then only a small fraction of the time.  She accused me of “throwing the baby out with the bathwater” (I still don’t really understand how this idiomatic expression applies here) and she further went on to insist that there is “no way ABA could cause PTSD in people with Autism.” (She really meant “Autistic people,” I am sure.)

Humans have an amazing innate response to survive when they are faced with a threat or danger, fight, flight, or freeze. This is an automatic nervous system response. The fight and flight responses are triggered by the sympathetic nervous system, and the freeze response is triggered by the parasympathetic nervous system. Both of these systems combined make up the autonomic nervous system (ANS). When one of the responses is dispatched the human body simultaneously releases adrenaline and cortisol. If the ANA is only triggered once, for example maybe you almost rear-end someone while driving, your body would typically return to a calm state in 20-30 minutes. But, when the ANS is repeatedly triggered without time to regulate and return cortisol levels to a manageable level, what results is trauma-induced post-traumatic stress disorder (PTSD).  (Cleveland Clinic, 2019)

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Visit the Therapist Neurodiversity Collective website to view the rest of the article

Autism: How to be normal (and why not to be)

This being autism awareness month, you’ll probably see me posting more articles about autism than normal. I make no apologies for doing so.

The following heartfelt Youtube video is from a TEDx presentation by a fellow autistic, Jolene Stockman. Her experiences very much parallel my own, apart from learning to drive (I found it easy and enjoyable) and the age at which being autistic was discovered (60 in my case).

We deserve better

In the unlikely event that you are unaware, April is Autism Awareness Month. You may see slogans such as “light it up blue” and others promoted by an organisation inappropriately named Autism Speaks. What it doesn’t do is speak for the autistic community, and in the eyes of most adult autistics it does more harm than good.

Below is a video clip created for Autism speaks in (I believe) 2016. While their rhetoric has been toned down in recent years, I see no evidence that their attitude towards autism has shifted one iota. It depicts people such as myself causing irrevocable damage to families and that we as autistics have very few prospects of living a rewarding life unless we are “treated” or unless a “cure” is found.

I’m not bothering with a transcription for this clip as the voices are American and consequently Youtube’s subtitling of the clip is quite accurate. So for those who wish to read read along, please turn on Subtitles/Closed captions.

The “I am autism” video by Austism Speaks that most adult autistics find offensive.

Here are some appalling statistics related to people who are autistic. These are statistics from Australia, but in all “developed” nations you’ll find the situation is similar. It’s important to understand these are not inherent in autism itself, but are entirely due to the way society treats those with autism. If you think racism is harmful, what do these statistics tell you about ableism?

• About 60% of adult autistics are underemployed or unemployed
• 87% of autistics have a mental illness
• autistic people are nine times more likely to die by suicide than the general population
• autistics have a life expencey of 54 years

We deserve better.

We don’t need to be cured. There’s nothing wrong with us. As suggested in the next video clip, perhaps neurodiversity is important in maintaining a healthy and sustainable cognitive environment in the same way as biodiversity is important in maintaining a healthy and sustainable physical environment. What is very clear to autistics is that current social attitudes towards autism is harmful. It’s not us as individuals that need curing. What is needed is a paradigm shift in how society views neurodiversity

A transcription has been prepared by Theresa Ranft and reviewed by David DeRuwe, so for those who find the Australian accent difficult or for those with hearing difficulties, please turn on Subtitles/Closed captions.

About the speaker Jac den Houting:

Being diagnosed with autism is often seen as a tragedy. But for Jac den Houting, it was the best thing that’s ever happened to them. As an autistic person, concepts like the Neurodiversity paradigm, the Social Model of Disability, and the Double Empathy Problem were life-changing for Jac. In this talk, Jac combines these ideas with their own personal story to explain why we need to rethink the way that we understand autism. Jac den Houting is a research psychologist and Autistic activist in pursuit of social justice. Jac currently holds the role of Postdoctoral Research Associate at Macquarie University in Sydney, working alongside Professor Liz Pellicano. In 2015, Jac was awarded an Autism CRC scholarship to complete their PhD through the Autism Centre of Excellence at Griffith University in Brisbane. Prior to this, they gained almost 10 years’ experience as a psychologist in the criminal justice system, with the Queensland Police Service and Queensland Corrective Services. Jac was identified as Autistic at the age of 25, and is proudly neurodivergent and queer. After participating in the inaugural Future Leaders Program at the 2013 Asia Pacific Autism Conference, Jac quickly became established as a strong advocate for the Autistic community. Jac is a current member of the Autistic Self Advocacy Network of Australia and New Zealand (ASAN-AuNZ)’s Executive Committee, the Autism CRC’s Data Access Committee, Aspect’s LGBTQIA+ Autism Advisory Committee, and the Aspect Advisory Council.

source: https://www.youtube.com/watch?v=A1AUdaH-EPM

Why everything you know about autism is wrong – a TEDx talk by Jac den Houting

Agreeing to disagree – opinions vs realities — unwrittengrace

As someone who belongs to a distinct minority that has been pathologised as being “broken” more so than accepted as different but equal, the post below speaks very much to my condition (Quakerspeak for “my experience is very similar’). Thank you gracenotes17 for your contribution to this very important topic.

I have often heard people say that it’s important to be able to voice your opinion and disagree with others’ without being accused of hate speech. To an extent, I agree. I think everyone has a right to voice their opinion, and when people are able to do so respectfully, it can be an opportunity […]

Agreeing to disagree – opinions vs realities — unwrittengrace

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

A truth about autism

Very simple fact:

So often autism is treated as a childhood disorder. It is neither a condition unique to children, nor a disorder.

There are many more autistic adults than there are autistic children. For every autistic child, there are at least three autistic adults. As the general population ages so too will the autistic population.

I make a distinction between disorder and disability. And a great many of the disabilities attributed to autism are in reality, social constructions created by non-autistics that are punitive when we are our true selves. Don’t forget that American psychiatrists didn’t remove all references to homosexuality as a disorder until 1987. In time, autism too will no longer be considered a disorder.

WHAT IS AUTISM?

In yesterday’s post I quoted from and linked to an article that argues that the pathology paradigm is a cultural value judgment and not a objective scientific conclusion. So if autism is not a disorder, what is it? Most online scientific and medical literature still use the pathology paradigm, as do most sources within the autism community^(a) and so are of little help when looking at what autism really is.

To gather a more accurate description one needs to look at the literature from the autistic community^(b). The “problem” with following this course of action is that most descriptions are based on personal experience and are therefore subjective in nature rather than being objective in a scientific vein.

^(a)Autism community: allies of autistic people; caregivers of autistic people; extended family of autistic people; professionals who work with autistic people; anyone who thinks they know anything about autism.
^(b)Autistic community: autistic people.

And here’s why it’s a problem: The experience of every autistic is different. The picture I paint to describe what autism is for me will be different from the picture painted by another autistic about their experience. Some of my experiences might event contradict those of another autistic. Many non-autistic people have an issue with this. They see inconsistencies, discrepancies that they interpret as “nonsense”, “bullshit”, “you’re making it all up”. And we’re the ones who are supposed to have rigid forms of thinking??

Comprehensive descriptions that include autism in all its variations and follow the neurodiversity paradigm are few and far between, but I find the following from the NEUROCOSMOPOLITANISM blog one of the better descriptions of what autism is.

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

What Is Autism? – NEUROCOSMOPOLITANISM, March 1, 2014

Autism and the Pathology Paradigm

I was late in being diagnosed as being on the autism spectrum – I was 60 years old at the time. At first I tried to prove that I was not autistic, but when that failed I reluctantly accepted that I had a disorder. It took quite a few years to realise that autism is no more a disorder than diversity in sexual orientation or gender identity are.

The following paragraphs from Autism and the Pathology Paradigm summarise my current understanding. You can read the full article by clicking the link in the citation at the foot of the quoted text below.

The choice to frame the minds, bodies, and lives of autistic people (or any other neurological minority group) in terms of pathology does not represent an inevitable and objective scientific conclusion, but is merely a cultural value judgment. Similar pathologizing frameworks have been used time and again to lend an aura of scientific legitimacy to all manner of other bigotry, and to the oppression of women, indigenous peoples, people of color, and queer people, among others. The framing of autism and other minority neurological configurations as disorders or medical conditions begins to lose its aura of scientific authority and “objectivity” when viewed in this historical context – when one remembers, for instance, that homosexuality was classified as a mental disorder in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) well into the 1970s; or that in the Southern United States, for some years prior to the American Civil War, the desire of slaves to escape from slavery was diagnosed by some white Southern physicians as a medical “disorder” called drapetomania.

At this time, sadly, the pathologization of autistic minds, bodies, and lives still has not been widely recognized – especially not within the academic and professional mainstream – as being yet another manifestation of this all-too-familiar form of institutionalized oppression and othering. The academic and professional discourse on autism, and the miseducation on autism given to each new generation of professionals, remain uncritically mired in the assumptions of the pathology paradigm. And since bad assumptions and unexamined prejudices inevitably become self-reinforcing when mistaken for facts, this entrenchment in the pathology paradigm has kept autism-related theory, praxis, and education stuck in a self-perpetuating cycle of ignorance and bigotry.

Autism and the Pathology Paradigm – NEUROCOSMOPOLITANISM June 23, 2016