Common themes abound on the internet. Social media threads abound with multiple stories on the same topic. Media outlets duplicate the same stories with tweaks and changes. The screen media news each night runs the same sort of stories over and again.

As an autistic blogger, when I look back on the topics I have written on there are a bunch of themes that repeat themselves. It seems again and again these issues gain currency in the autistic and wider autism communities.

The thing is, these topics shouldn’t really need to be harped on, repeated, rehashed and re-emphasised again and again. They are just basic things that are well established and should be just a given. If they were we would be able to move on to far more pertinent issues like focusing on real accommodations for autistic across the lifespan, strategies to support autistics to achieve their hopes and dreams rather than minimise those hopes and dreams. Perhaps there could be a focus on the absolute lack of support services and advocacy for autistic adults, the blocks and barriers to adults accessing diagnostic services at reasonable cost. Dare I say, we could even try to work on the lack of workplace participation for autistic persons, that is at severely low rates even within the disabled communities at large.

I long for the day when scrolling through social media feeds, autistic groups etc will not mean I am flooded with posts needing to call for Acceptance, the importance of language, the debunking of the vaccine causes autism myth, the need to highlight that autism is difference not disease and explanations of the spectrum as more complex than a line from severe to mild.

Let’s get to it.

Acceptance …

With the major autism groups worldwide promoting autism awareness, especially through April each year, it remains a thing that acceptance needs to be portrayed as a counterpoint to this message.

There has been some positive moves here with the United Nations this year focusing on neurodiversity. This is a step in the right direction. Yet still the need to counterpoint remains. April 2 is still called world autism awareness day. This in itself is an issue.

Myriad of parent groups continue to declare they are “raising awareness” in their Facebook groups, with their t-shirts, with their blue lightbulbs and puzzle pieces. The false message of awareness is insidious and is counterproductive to real acceptance.

Within society awareness is overall a negative. When we are called to being aware, or to raise awareness it is most commonly associated with something negative. This is an antitheses to acceptance.

Road signs tell us to be aware of danger.

Our sources of news call us to be aware of criminals, predators etc.

We learn to be aware of danger and hazard. We don’t want to accept these things, and rightly so. Overall the message of awareness is about something that is to be eradicated or mitigated not something to be accepted.

One argument often cited is that we must be aware before we can accept. The problem is that the whole focus of awareness is about not being subjected to that thing. It’s a false argument. One does not need to be aware that a person happens to be LGBTIQ to accept that person. One accepts a person because they are human.

Autism acceptance is about that. Accepting a person as a human person. The fact that they are autistic is just a part of who they are, it is not something to be aware of. It is something that within an attitude of acceptance, learning who that person is, and how they exist and function in the world can take place. But awareness is not a pre-requisite of that.

Language….

The issue of language comes up again and again. The most common factor in this realm is the question of Identity-first or Person-first language.

Identity-First language simply is embracing the integral aspect of being autistic. It is acknowledging how intertwined that is to oneself and in a sense, celebrating that one’s brain is wired that way. It is characterised in a person referring to themselves and others as autistic and not person with autism.

Person-First language on the other hand simply refers to the person as a person with autism rather than as an autistic person. This is common place within the disability realm, it is how we refer to people with illnesses such a person with cancer.

Person first language is rooted in an ideal that the person be seen before the disease, disability, diagnoses etc. However the reality is, if one needs to refer to a person with (insert issue here) then one is not really seeing the person first after all.

In relation to autism, the majority of autistic people reject person-first language and prefer Identity first language. This then should be a moot point. But it’s not, as an autistic person I find myself regularly corrected by people demanding I refer to myself as a person with autism.

Therapists, support workers, clinicians, doctors and authors regularly use Person-First language. Often in the face of requests by the autistic individuals to which they refer not to do so.

As an autistic I know that autism is hard-wired into who I am. Therefore I am an autistic person, just as I am left-handed and not a person with left-handedness. I am a parent not a person with parentness.

Vaccines…

The very fact that this topic continues to need to be addressed is an indictment on our society. Few things have been more well established than the fact that vaccines to not cause autism.

Unfortunately, celebrities and politicians continue to further this myth. Films are produced that are high on myth, innuendo and conspiracy but low on fact, evidence and actual verifiable data that continue to push this narrative along.

It’s a simple fact, autism is not caused by vaccines. There is no such thing as autism by vaccine injury.

Let’s just move on from this bullshit and talk about support and services instead of bogus causes that prop up the conspiracy theory industry.

Difference not disease…

Different Not Less. It’s really that simple. We autistics are different, we not diseased and we are certainly not less.

When you think about this it is pretty clear. A disease is a thing that we catch, a thing that against our systems, it infects us, it attacks us, it attempts to diminish us.

Autism is non of these things. It is a neurological difference. A difference in the way the brain functions.

Not too many years ago homosesuality was considered a disease and even listed as a disorder in the DSM. Few think that way now.

It is my hope that in time few will think of autism in this way too.

Again though this is a thing that we seem to have to keep harping on but shouldn’t have to. It is a thing that we should be moving on to in preference to issues that will impact the lives of autistic people in positive and life affirming ways.

The spectrum is not a linear measuring device…

Ah, the spectrum, it’s almost a catch all phrase. It’s used often to catch all of humanity into a linear concept from mild or almost non-existent to severe and debilitating at the other. This is a falsity. It gives rise to such statements as “everybody’s a little bit autistic”.

This is not helpful at all to those that are in fact autistic.

The term spectrum came into play in an update on the DSM, it was employed to broaden the understanding of autism. Prior to this many who are autistic were unable to be diagnosed due to the strict criteria. The idea of the spectrum allowed diagnosticians to see a range of behaviours within the critieria. Initially the term continuum was floated.

The thing is though this spectrum is not and never was intended to place an autistic person in a static position on an imaginary line.

There are no ends of the spectrum. There are infinite possibilities and those possibilities change given the circumstances involved. In one day on one occassion I as an autistic may function very well and another not so well, yet in another situation that may be reversed. Indeed, that same situation on a different occassion could very result in me functioning very poorly.

Just like all human persons, we all function differently in different situations at different times.

The problem with spectrum as I see it is that the idea of a linear line is a tool that attempts to place an autistic person in a box. By placing that person in that box, a set of preconceived notions of what may or may not be needed to support them is applied to them.

Far better would be, in my view, to acknowledge that a person is autistic and then spend the time and resources to get to know that person well enough to establish helpful and appropriate strategies to support them.

A final word…

I know we will keep speaking on these issues because we will most likely have to. But surely it’s time to move on and focus on the issues that will actually help and assist actually autistic people to thrive in the world.

Perhaps it’s time to move on from arguing about issues that are not actually about autistic living and thriving and about making parents and professionals feel better about their autistic family members and clients.

But in the meantime, we will I guess, continue to talk about these things, as they are imperative in shifting the narrative of autism as a negative to autism as just a different way of being human.

Three common strategies used to dismiss…

Self-advocates, activists and others who advocate will recognise the signs, it is not that hard to spot these strategies and methods, and it’s very clear what these strategies are really all about. What it is about is simple, that the opinions of the disabled and the neurodivergent are not of the same value as those of the so-called “normal” people.

The sidelining and silencing of advocacy and activism takes many forms, however, the three I want to consider today are Tone Policing, Able-Splaining and Gaslighting. I understand that the sheer utterance of these terms will, in the minds of some, cast me as an SJW — Social Justice Warrior — a title meant to be an insult, and yet, how could being characterised as a person seeking justice, be it social or any other, be an insult. On to the three.

Tone Policing.

For the uninitiated tone policing is a method used to dismiss an argument on the grounds of the tone in which it is employed. It is at heart nothing more than a distraction, a diversion and an avoidance of actually considering the point being expressed. Often it is couched in the ideals of manners, respectability, and niceness. “Why can’t you say it nicely”, “could you say it without the anger”, “you don’t have to be so unkind” are all little examples of it.

In the end, though, it does nothing other than to dismiss a point of view without considering it. Just as a strawman argument, an ad hominem attack or any other logical fallacy goes, so too does tone policing, it is nothing more than a way of avoiding dealing with a point of view that is uncomfortable or goes against your personal belief system.

Unfortunately, so prevalent is this method of avoidance of uncomfortable thought, that it is a goto method employed by those operating from privilege. Tone policing is seen regularly in the mainstream media, often in op-ed pieces where those agitating for change are dismissed as angry and aggressive. Perhaps most often is it seen in regard to white male privilege in maintaining the status quo of gender equality.

In the neurodiversity circles, I frequent it is couched in terms of nicety. Parents won’t listen if you don’t say it nicely we are told. The absolute hypocrisy of this is that these same parents are quick to dismiss neurodivergent people as damaged, intellectually and socially inferior, in other words, as less. Now in my book labelling, people as such hardly passes as being nice.

The reality, of course, is, that disability advocates are rightfully angry, just as civil rights activists are, just as health advocates are, just as anyone who has been alienated, silenced and othered by the systems and people around them. History is full of change that was sparked by acts of defiance, Rosa Parks staying on the bus, wasn’t an act of nicety, it was an act of defiance, and I am pretty darn sure, she was damn angry.

In my own country, the indigenous peoples didn’t manage to gain the few rights they have be being nice, they did it be being defiant, by speaking out, by telling it like it is, without wrapping it up in nicety and respectability.

When the strategy of Tone Policing fails, the next move ensues…

Able Splaining…

What the heck is able splaining is a question that is legitimately going through people’s minds I expect. Well, it’s kind of like mansplaining. However, it is defined it is employed in such a way that the proponent of the strategy assumes a superiority in the topic in question and goes about the process of explaining how you are incorrect or mistaken. This may sound just like a person employing an explanation, however, it is peppered with little hints, and other little tidbits of how, because of your disability, you need help to understand it.

It is nothing more than a strategy that is inherently ableist. It assumes that the non-disabled is automatically intellectually inferior to the so-called normal person. That assumed inferiority must be incapable of comprehending the issue at hand and so it must be explained in such a way as to highlight all the way in which the inferiority is manifest.

Ablesplaining can begin with something along the lines of “I know because if your autism, that it’s hard for you to…” This is then followed on with a continued explanation in simplified language accompanied with a good dose of ableist stereotypes and slurs.

My experience has been generally the person doing the able splaining has a simplified and flawed grasp of the topic at hand. A good example of this is the implication that autistic people don’t have empathy, or alternatively that using person first language is putting the person first.

When able splaining fails the final member of this gang of three ableist strategies is used.

Gaslighting…

Gaslighting is a term well known to many who are advocates or activists. The term comes from a movie called Gas Light. It is a manipulative strategy, that is essentially employed to make the receiver question and doubt their reality. It is a tool of trade employed by many abusers, particularly in the case of partner abuse. This article gives a good in-depth introduction.

When the gang of three ableist strategies are employed, I have found that first comes to the tone policing, then the able splaining and finally the gaslighting is employed. It is employed in such a way that it relies on the previous two to cause the person to question themselves and cast doubts on their own understanding and experience of the situation that has just transpired.

Most commonly I have found this third member of the gang of three to be employed when the disabled, the member of a minority, or, disenfranchised person, dares to call out the tone policing and able-splaining.

“Oh no, that’s not what I said”, “Oh you have just interpreted it incorrectly” are two examples of phrases that are used. Another is to simply outright deny that an event occurred. In social media contexts, this is then given credence through the selective deleting of comments from threads in order to make it appear that the person is having an exchange with an almost imaginary person.

Gaslighting is an extremely damaging psychological manipulative tool that can and does cause real trauma. It can be easily missed until one is right in the middle of it, and easily dismissed by others as you making too much of a thing. Therein lies its insidious destructive power.

And so….

What I have called here this gang of three ableist strategies can be damaging to people. They can cause people to be sidelined and silenced, discounted and disconnected. They are employed frequently to “other” disenfranchised people and to disregard their human rights.

These strategies are deftly employed in particular, within online social media and forum communities. They should and must be stood against. From an autistic perspective, our voice has been silenced and sidelined, in preference of the professional class and the non-autistic parent class for far too long.

The cogency of a point of view is not contingent on the tone in which it is employed.

If something needs to be explained to me, an explanation without the superiority of so-called “normality” is insisted upon.

Attempts to call into question my reality and perception do not change the reality of the situation.

The advocacy and activist community must, I believe, stand up and continue to call out this gang of three. If we allow it to continue, it becomes acceptable. And as an Australian Army leader has said, “the standard you are prepared to walk past is the standard you are prepared to accept”.

W is for Words…

Ever heard someone say words can heal and words can harm, or perhaps words have power. There is a nugget of truth in these statements I think.

When it comes to the concept of words, it’s a bit of a key issue in the autism world. It’s a key issue in a way I don’t really think it should be.

What are words anyway?

On the one hand, they are just groups of letters gathered together to communicate a message.

On the other hand, they are sounds grouped together to communicate a message.

But if that’s all we think they are, we are missing so much.

Words are not just sounds grouped together and they are not just marks on the page or screen.

They are communication. They are a conveyance of meaning, need, feeling, love, care.

But they are also so much more than just those things. As the saying goes a picture is like a thousand words.

W is for Words.

Words do not just spill from our mouth parts or even fly from our fingertips on a keyboard or our pen on paper. Words come in pictures, in other forms of communication.

Because in the end that’s what it’s all about these words. It’s about communication, connection with another.

But this communication is not just spoken or written words.

We convey it with touch.

We convey it with looks.

We convey it with gestures.

We convey it with behaviour.

Words are a real issue in the autism communities. And I think the focus is in the wrong direction. The focus is squarely for the most parts of spoken words.

But as stated spoken words are only a part of the picture here and the focus on them does a disservice and at times goes to isolate and disempower autistic people.

W is for Words.

In autism circles, there is a huge focus on verbal v non-verbal autistics. And in reality, that is not what is meant at all. What

is really meant is speaking v non-speaking. Verbal is really a facility with a language, an ability to understand and use that language. The method of it is largely irrelevant.

Speaking, however, is different. Speaking is much more focused on the use of the mouth and vocal chords. Unfortunately, it is given ascribed value over other forms of communication.

There are many non-speaking autistics that communicate with far more eloquence through their chosen platforms than many that can employ thousands of spoken words at will.

Many autistics communicate eloquently through other methods like art.

A premium value is placed on the use of spoken language and it devalues other forms of communication.

W is for Words…

To be clear, it is important to provide the environment that will enable people to use the spoken word if possible. It is not, though, the most important thing you can provide for a person, autistic or otherwise.

I have heard many times people claim an autistic person has no communication when this is untrue. Generally, what they mean is, they can’t speak. Often there has been an intense focus on getting the autistic person to speak with their mouth parts. This is at an unfortunate cost of withholding and devaluing other methods of communication for the person.

In effect, a focus on the spoken language has actually silenced all communication for that autistic person. In vain that person will, in all likelihood, be employing as many alternative modes of communication to convey their needs as they can access.

We must listen to the words regardless of the form they take.

W is for Words…

Sometimes the elevation of the spoken word has such negative impact for a person that the only thing they have left is communication by behaviour. What those caring for the person will often describe as bad behaviour. Even to the point of invoking meltdown.

The refrain of lament in these situations is often a cry for help with the terrible bad behaviour, a cry of how terrible it is to deal with the horrible autism.

The reality is that often the situation is as it is because alternative communication is lacking and shunned.

The bad behaviour is employed to communicate difficulty, to communicate needs, to communicate overload. It’s so easy at times to focus on the issue of what the behaviour is rather than to look beyond the behaviour and try to find out what has led to it.

What is that person saying with that behaviour, rather than, you naughty person, that is not appropriate and not acceptable?

W is for words…

In terms of my own experience with the spoken language, I don’t really recall aquiring them to be an issue, however, I do at times have difficulty using the spoken word, this is often in a time of overwhelm.

My youngest daughter was quite late to talk and still as a ten-year-old some speech difficulties. In times of overwhelm, she employs behaviour to communicate this.

It’s easy as parents to respond to the behaviour and not the communication, but that there is the challenge.

Words are about communication and communication is about more than words.