A Gang of Three…

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.

tone-police

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.

able splain

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.

burner-8477_640

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”.

Should we just scroll on past?

Scroll on by…

I see this a fair bit on social media if you don’t like it just scroll on by. This is often coupled with the statement that everyone is entitled to an opinion, you should respect that. Well, is it really that simple. I suppose it’s true that we are all entitled to hold an opinion on things, but is it really just a difference of opinion or a disagreement on an issue when a person maintains a position in the light of clear evidence to the contrary?

In recent years the Australian Army have been forced to face the issue of sexual assault, sexual harassment, gender inequality being rampant within its ranks. It has been an issue for a long time. For too long it was not addressed and swept away as an anomaly or isolated incidents. In the midst of this the Head of the Australian Army, David Morrison in a statement about the issue declared to his soldiers that “the standard you walk past is the standard you accept.” Telling his soldiers if they walk past any of these issues they are effectively accepting them as Ok.

Back to social media, and in particular so-called autism support groups, these are groups are often dominated by parents of autistic children, predominantly mothers. They are a playground for conspiracy theories, quack treatments and cures and of course the ubiquitous lies of the vaccine and autism link myth.

Links to quack sites are regularly posted, to sites such as vaxtruth.com naturalnews.com and similar havens of absolute rubbish and lies.

Should we just scroll on by and not note that these are indeed quackery, disproven claims which are not supported by the scientific evidence?

Should we just put this down to a difference of opinion?

Statements about abusive treatments curing a child with bleach, or unregulated bovine hormones? Should we just scroll on by and mark it down as just a difference of opinion, you know they are entitled to have that opinion?

In a sense, it could be reasonable to say yes, you could just scroll on by and leave them to the false beliefs. It would certainly enable a more peaceful and conflict-free social media group.

But here’s the thing….

They are lies. They are wrong. They contribute to spreading falsehood and pathology and, most importantly, they place vulnerable human beings in grave danger.

It has become such an issue in some groups that rules are set in place to ban those particular posts, which, seem to be utterly ignored by the evangelical fervour of the vaccine causes autism brigade.

And here’s another thing…

These groups are often joined by parents who have just discovered or are in the process of discovering that their child is autistic. With newly diagnosed kids, they are in a state of shell-shock, they are looking for answers, and unchallenged rubbish leaves them vulnerable.

A link to a so-called miracle cure that is left unchallenged is fertile ground for vulnerable and shell-shocked parents to be deceived.

So I posit that it is far from the right thing to scroll on by. To leave such lies and deception unchallenged. It becomes in effect that “the standard you scroll past is the standard you accept”.

These lies must be challenged. These abusive treatments must be stopped. These evangelical spreaders of quackery must be held to account for their lies and misinformation.

No, we should not just scroll on by. We should stop, we should speak up.

Because no, it is not just a difference of opinion, it is incorrect, untrue and false information. It should and must be challenged and shown for what it is.

Please, I beg you, never just scroll on by past lies, quackery and dangerous treatments.

The truth must be spread, being autistic is #DifferentNotLess, and autism does not need to be cured.

Z is for Zenith

Z is for Zenith…

It’s April 30, the last day of April and the last post of this series. I am somewhat amazed I managed to get through it. It’s the zenith or the culmination of the series.

What can be said as a culmination, what is the zenith of this series? What is the key point of all this anyway?

Why have I gone to the effort of pouring out myself onto this blog over this last month?

I don’t believe there is a definitive answer to any of those questions. I think what there is, though, is a sense, a sense of the why and what purpose.

That overarching purpose is, that as an autistic I am different not less, that I am actually autistic, and most importantly that autism acceptance, celebration and pride is a good and positive thing to work for and to embrace.

It is a truism that an autistic always understands autism better than a non-autistic. I have at times been told this is a statement of arrogance, but it’s not arrogance it just is what it is.

The fact is, that no matter how much a person who is non-autistic tries to experience autistic reality, empathises with, gets to know autistics or listens to them, they will not ever be in the situation that an autistic is in. That situation is that the being autistic is a non-changeable reality. An actor can get to know their character and be that character to a certain extent, however, they will also always be in the position of being able to step out of that character and returning to being who they are.

And so the Zenith.

Being autistic is good.

Autistic acceptance is good.

Autistic pride is good.

Autistic celebration is good.

There is also the not so good, the bad and the ugly.

There is cure culture, and that’s bad.

There is narrative of brokenness, disease and disorder and that is bad.

There are terrible therapies and they too are bad.

The lists could go on. So many examples could be added, yet what is the point of that. In the end, the culminating message, the zenith of all I have to say is essentially this.

Autism Acceptance is a good thing. It is a good thing because it acknowledges and embraces the reality that autistic people are human people, who are not lacking, not lost, and not in need of being released.

Autism Acceptance is a good thing. It is a good thing because it leads to Autistic Pride. Autistic pride is good because it allows an autistic person to have self-worth, to believe in themselves and have an inherent pride in who they are, and in turn an underlying belief that they are worthwhile, and they have the potential to achieve their dreams.

Autism Acceptance is a good thing as not only does it lead to Autistic pride but also to Autism/Autistic celebration. In the face of the awareness paradigm it is pretty hard to celebrate

autistic achievement because it is always seen not for achievement in its own right but within a paradigm of pathology, a paradigm that says, oh look what that little special person did, isn’t that wonderful. It’s celebration lite.

True autism celebration can be so much more, it can be a celebration of achievement simply for achievement. Not in spite of autism. And even better than that can be, celebration because of autism.

Because I am autistic I had the ability to harness the way I experience the world and make this, do that, write this, paint that, say this, make that.

Autism acceptance is a good thing. It is a good thing because Autism is not an inherently bad thing.

Z is for Zenith and the zenith is Autism acceptance is good, autism is good, the world is better because…

Autism!

Y is for Yearning

Y is for Yearning…

Yearning, for acceptance. Still yearning for acceptance. It seems forever that neurodivergent people will continue to yearn for acceptance.

Why is it thus?

I ask this with all genuine enquiry, why is it seemingly so difficult to accept difference and diversity when it comes to neurology and disability. I just do not get it. I really don’t.

I yearn to stop hearing a negative narrative that portrays me as less.

As a disordered thing…

As diseased…

As dangerous…

As a destroyer of families…

A ruiner of marriages…

As vaccine injured…

As an epidemic…

A catastrophe…

A blight…

I yearn for acceptance and not awareness.

I am not an evil, a negative force, a contagion or a bringer of death by a disease that society must be aware of, or should that be BeWare of.

I am none of these. I am a human person, just like you are, and I long to be accepted as just another person, as I am sure you do too.

April is ending, and the flooding of your newsfeeds in your social media platforms, by autism awareness posts will quickly thin down and be replaced by the next awareness campaign. The news shows will forget about autism segments, the trends on Facebook, Twitter and Youtube will shift and the year will go on.

But we autistics we are still here. Still yearning for acceptance.

We don’t thin down and disappear just because April has ended.

Yet, many of us are pleased that April has come to an end, many of us are just plain exhausted.

I see in my own newsfeed many posts by autistic friends conveying their yearning, their exhaustion and their desire for the end of April, for the end of the awareness mantra. In short a desire for acceptance.

There is a saying that says “Rome wasn’t built in a day” and I have always taken that to mean that things take time, and especially important big things take time to happen. I guess there is some wisdom in that when it comes to the autism awareness phenomenon winding down and true acceptance becoming the reality.

A refrain I often here is that acceptance can’t happen without awareness. To which I reply with a loud cry of bullshit. This is a delaying tactic, this is a diversion to the real issue.

To accept something does not require me to actually be aware of it. I have LGBTIQ friends that I accepted long before I was aware that they were LGBTIQ.

No awareness is not necessary for acceptance, and that’s because as humans we have the capacity for acceptance, we have the capacity to accept each other without knowing or being aware of every little thing that makes each other who they are.

And in the end, awareness is, in my view, passive. In fact, it is a kind of active passivity.

But I light it up blue, I change my profile picture, I share articles, I go on autism walks, etc is the refrain.

Right, and that helps me or any other autistic how?

It is, in fact, an act of passivity as it actively engages in actions that have no direct impact on improving things for autistic people.

Acceptance, though, is active. Acceptance, though, doesn’t require walks, or lightbulbs or profile pictures. Acceptance, though, requires a simple change of heart.

Acceptance is a simple action of acknowledging the full humanity of another, and upholding their human rights. Human rights to self-determination, privacy, health, safety etc.

This is what we yearn for. Acceptance. Human rights.

Autistic rights are just human rights. The same human rights that non-autistic people enjoy.

It may be an unpopular view, however, awareness campaigns need to end and acceptance campaigns take over. I firmly believe this, because as long as they don’t, for as long as we continue to promote awareness first:

The narrative of disease, disorder will continue.

Organisations will exploit us to make money.

Media will continue to depict us as wrong.

Electric shock therapy will be approved for behaviour management

Bleach will be fed to children and vulnerable adults.

Dog training will continue to be the “treatment” of choice.

Politicians and celebrities will continue to declare us an epidemic.

Discredited doctors will make films about us and declare us a blight.

The list could go on, but you get the point.

Y is for Yearning and I yearn for acceptance.

Then can come celebration and pride.

Y is for Yearning…

X is for Xenophobic

X is for Xenophobic…

So I had to come up with something for X. I looked up a list of x words and mostly they are pretty meaningless to me. I am sure they have genuine and important meaning but to me they are unpronounceable and I would need to spend a long time in a dictionary. Perhaps there is a more relevant word beginning with X in regards to autism and living autistically but Xenophobic is the word I used.

Mostly we hear the word in relation to racist rubbish, I have heard it thrown around a little in light of the Syrian refugee crises the world is grappling with. But to me at its heart, the meaning is fear of other. And in that respect, it is a highly appropriate word to be considered in regard to autism acceptance month.

Yes, xenophobic, it’s like that look in the eye you get from some people when you say oh I’m autistic or my child’s autistic. It’s the look of irrational fear that underneath pretty much says, oh shit, get away from me you freak, or keep your freak child away from me.

Xenophobic, that is what is going on in the terrible rhetoric, the negative narrative, the blame games, the latest claim to a cause or a cure.

Xenophobic is the reality of what is going on when organisations like Autism $peaks make adds like the notorious “I am Autism” video, where this terrible other, this plague, is coming to destroy you.

Xenophobic is the paradigm that is occurring when murderers of autistic children have sympathy conveyed to them, because, shit, life must have just been so tough with an autistic child.

I’ve said it before and I’ll say it again, there is no question that living as an autistic person or raising autistic kids is a struggle at times. It’s tough, but it’s also glorious, wonderful and fulfilling.

But you know what, living any life is a struggle and raising any kid is a struggle. I guess it’s called life.

Xenophobic, though, that’s the fear and hatred that gives rise to celebrities making ridiculous claims about us being an epidemic, it’s the stuff that causes fraudulent research studies blaming vaccines for creating us, it’s the stuff that gets political candidates to claim we are an epidemic in the hope of garnering support and votes.

I am autism, and, you know what, I am not to be feared.

I am autism and you know what else, I am not here to destroy you, your marriage, your family, your work, your anything.

I am autism and I am just here to live my life. Just, as I suspect, are you.

Autism and autistics are nothing to be scared of. Contrary to the mythic beliefs that we are empathy lacking empty shells, we love, we laugh, just like you do.

Xenophobia about us rears its ugly head when there is a mass shooting or other terrible occurrence. Quickly you see people make a claim that the perpetrator was autistic or aspergers, groups on social media are created to malign us.

We are nothing to fear. We are autistic, just as we are Australian, American, Brittish, French, Irish, Russian etc.

Just as we beg you not to grieve for us, so we beg you not to fear us and not to hate us.

I’ve seen at times attitudes by some parents of autistic children talk about hating the autism. Again this is Xenophobia rearing its horrible ugly head. In these cases, it causes a level of disconnect for the parents, a disconnect that autism and their child are inextricably linked.

It’s kind of like saying I hate the Australian in you but I don’t hate you. I am Australian, I was born here, I live here, I grew up here. The Australian in me is inextricably a part of who I am.

It’s the xenophobic rubbish that gives credence to the lies, that, too many unfortunately believe, that autism has robbed them of the child they had, or the child they deserved. That somehow they have this changeling in the place of the real child.

No, you don’t have that at all. You have the real child. They are right there in front of you. They long for your love, your care, your protection.

They long for your acceptance.

A Xenophobic attitude has damaged autistic people for far too long. It has given rise to hate, fear, abusive treatments, lies and myths, and of course the ubiquitous BeWareness campaigns.

Autism Acceptance though is the antithesis of this xenophobic attitude.

I am autistic, I am here.

I am autistic I am human.

I am autistic there is nothing to fear or hate.

W is for Words….

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.

V is for Valuable…

V is for Valuable…

There is an intrinsic value in every human person. It’s not a measurable value, it’s not a measure of value against other humans, it just is. Every human person is intrinsically valuable. They are valuable to those around them, they are valuable to siblings, parents, extended family, society, and the world.

I am a neurodivergent person. I am valuable. My wife is a neurotypical person, My wife is valuable. I am no more valuable than she, and she no more valuable than I.

Every human person has value. It is an immeasurably important value.

It is an extremely unfortunate aspect of modern life that this intrinsic value is artificially measured by society and that prowess in some aspects of life are ascribed an unreal value and promoted over and above everyone else.

A disabled person, whether that be a physical, neurological, intellectual disability is of no less value than a person who is not disabled.

A Prime Minister or President is of no more value than a dishwasher, a construction worker, a bar worker, a croupier, a builder, an accountant, an engineer or any other occupation or vocation that can be named.

V is for Valuable.

A football star or a baseball star is not more valuable than an autistic person who has difficulty with managing the day to day tasks of life.

An Olympic medalist is not more valuable than a blind person who relies on others to assist them with daily living skills.

It is a distortion of reality that we elevate such people. It is an even greater distortion that we do the same for people being famous, for playing a role in a film, for singing a song, or for winning a reality TV show.

This is nothing more than a distortion, because all people, every single human person regardless of ability, fame or fortune are in fact equally valuable.

We live with so many distortions of the intrinsic value of human people in society. We seem to get a kick out of creating false hierarchies of value.

We elevate people on the basis of the job they perform.

We elevate people based on their adherence to a socially constructed normality.

We privilege ourselves on the basis of sex, gender, class, race, sexual identity to name but a few.

This is not reality. This is nothing more than us making a social construct in order to make ourselves feel better about ourselves. In order to exert power and control over others.

It is I believe, time to declare that the emperor is, in fact, wearing no clothes.

This declaration must occur, because people are being harmed. People are being subjugated. People are being abused and tortured. Declared other, disordered, sick ill and less.

This surely needs to stop.

People are hurt. Groups of people are maligned in the name of this false assignment of value.

Groups of people are labelled as wrong, sinful, corrupt, broken, and wrong when, in fact, they are probably more authentic and genuine than those doing the so-called value assignment.

Neurodivergent people, and in particular at the moment autistic people are being labelled and valued as wrong, sick, disordered, diseased, a holocaust, an epidemic, vaccine damaged, serial killers, and other, when in fact we are just different. We just have a different neurological wiring which means we experience the world differently and so we interact, communicate and act differently.

Not wrong, just differently.

We are intrinsically valuable because we are human.

We are not subhuman.

It does not matter if we speak with our mouth parts or communicate in other ways, we are valuable.

It does not matter if we seem to effortlessly manage daily living or we need help with that, we are valuable.

It does not matter if we are highly intelligent or not, we are valuable.

It does not matter if we have few or many comorbid conditions we are valuable.

V is for valuable.

All human being are valuable.

V is for valuable. All humans are valuable and yes to be clear, autistics are human. They are not subhuman shells as Ivaar Lovaas dared to claim.

V is for valuable.

I am valuable, you are valuable and yes, even D Trump and H Clinton are valuable.

U is for Understand

U is for Understand….

To understand is more than a cognitive issue. It’s also an active issue. It’s one thing to comprehend Pythagoras’ theorem or Trigonometry, but that comprehension is irrelevant to anything unless it is applied in some use. It’s all very well to know that lengths of a triangle can be deduced from the formula a²+b²=c², but what use is this if never used to actually discover the unknown length of a triangle side?

True understanding is not just the knowledge or comprehension of a thing, it is more, it is an act of applying that knowledge or comprehension.

In my school life, I chose to complete the lowest level of Mathematics I was able to, against all good advice from teachers and family. It was not that I was unable to complete the more difficult levels, I could have, quite successfully, I just believed it to be irrelevant. In effect, I believed it was like knowledge without application, and therefore without true understanding.

In the first year of post-high school, I discovered the stupidity of my decision. I gained entry into a course to become a land surveyor and an employment position as a surveyor’s assistant. I position in, which I would need to apply mathematical knowledge every day. In addition, the course, I began required the higher level of mathematics and so I was forced to complete a bridging subject to bring my mathematics up to the required level.

I share this to attempt to allude to how without a true understanding of a thing, it is difficult to make an accurate judgement of things. I didn’t have a true understanding of Surveying, and so I made a cognitive judgment based on my own desires and was found wanting.

So it is with “Autism Awareness” campaigns. Well-meaning parents, families, friends, charities and service providers jump in with both feet to “raise awareness” about autism. Puzzle pieces are adorned, coloured light bulbs are purchased, blog posts are written on all things autism, the latest cause is announced, the next miracle cure or groundbreaking treatment is spruiked.

But zero of this comes from a place of understanding. It comes from a place of cognition. It is with a sense of knowledge about autism rather than an understanding of what it is to be autistic. Certainly it is often levied with good intention, with a genuine heart to help and assist.

But, for the most part, it doesn’t help it harms.

It harms autistics. It really does. It harms because it perpetuates the myth that a thing needs to be thoroughly known, that a saturation point of knowledge must exist before acceptance of that thing can occur.

A true understanding of autism can’t exist unless acceptance is part and parcel of that understanding.

The raising awareness phenomenon doesn’t help us it harms us. It is, in reality, a passive thing. It doesn’t actually do anything to support us, make our lives better, help us into employment, provide us access to needed services etc.

What the raising awareness does do is provide feel goodness to those that participate in it. It feels good to go on a walk to raise money for awareness. But in the end so what! What does that do for that autistic girl in the class who is constantly overloaded by the sensory hell she deals with every day in class?

Understanding is acceptance, and it’s an action based thing.

The total lack of understanding of the awareness phenomenon is displayed on so many levels, not least of which is the insistence of the use of person first language, in direct contradiction to the expressed wishes of many autistic people.

At a whole other level is the all too regular occurrences of autistic humans dying in encounters with law enforcement. Yet another case just over this last weekend.

As an autistic person, I seek acceptance and understanding. You don’t have to know everything about autism in order to understand and accept me. You gain understanding in the act of acceptance. You gain understanding as you get to know me, you gain understanding as you experience me for me, not for whom I can pretend to be.

Understand this, that autism is not actually a thing, it can’t truly be studied, it can’t be truly cognitively known. It is not really a thing, it is a way of being, it is a neurological reality. It is not a tangible thing that can be touched, measured and categorised, it can, however, be understood through the acceptance of those who have the lived experience of being autistic, of being neurodivergent, of living every moment in that reality.

U is for understanding. Please pursue it.

T is for tired…

T is for Tired

It seems to be a perpetual state of being. Tired, always tired. Why is this the fact, yet it seems to be so common when I speak with other autistic people.

Tired, a state that is always the case, just in varying degrees of intensity.

Of course, the irony is that whilst many autistic people are perpetually tired, it is also common for us to have difficulties with sleep too.

But that’s not why we’re tired all the time, well I suppose it has a contribution but I don’t think it is the main reason. I think the main reason is a lot more to do with the requirements of making our way in a world that is not designed for us. Making social interaction in situations we don’t understand the rules, remembering the rules of how to act in places, remembering the rules about what to say and what not to say.

That’s just the start. There is so much more that contributes to it.

Virtually all things we involve accommodating ourselves to a neurotypical and allistic way of acting, being, listening, speaking, working etc..

Just walking my daughter to school involves this. We live very close to the school so thankfully on the occasion I need to do this it is only a short experience. However, it involves sharing a footpath with many others parents and children, walking through a crowded and busy school ground with many people walking and kids running around and playing.

If you are a neurotypical person reading that you probably think, yeah ok so what, no big deal about that. That’s just an ordinary everyday thing to do.

If you are an autistic person reading you are possibly nodding your head with an understanding of what is involved in this ordinary day to day thing to do.

Faced with encountering a crowded footpath, involves a constant inner dialogue of assessing, analysing and deciding which people are the ones that I should greet and which ones shouldn’t I. Is that facial expression a friendly one that seeks a response? I am not sure. Coupled with this is dealing with the how to negotiate the space, which way do I dodge and weave as I pass this person, oh-oh, that person is stopping to have a chat with that other person, what do I do, do I just go around, do I say excuse me?

Then the school yard, people going in all directions, words flying, kids playing, it’s a bit of a nightmare, with working out your bodily space, again who do I interact with, was that person wanting to interact or not? Was that greeting just a social greeting

that I return and keep going or was it perhaps a signal of wanting further interaction.

This small ordinary everyday task is difficult, it is a task that takes up significant emotional, sensory and intellectual resources. It contributes to the state of being tired.

I confess, I avoid this task as often as possible, and thankfully my family members are generally able to do it for me.

I used to be a primary school teacher, I did this for a few years. It was a major contributor to a state of perpetual tiredness. A day of interacting with 20 plus young children, negotiating all the social interactions of that. Often meetings at the end of the day with other staff.

Actually, I was pretty good with the kids side of things, but the doing stuff with another staff was somewhat of a disaster for me. When it came to reading all the unwritten rules of the workplace, understanding when the boss asked for opinions on an issue for example, well the difficulty there was trying to work out the times they really meant that or when they just wanted it to look like they were consulting with staff. I pretty much always got that wrong.

Then there were the times where staff complained about things, so thinking you were doing the right thing you raise it at a meeting only to be left there as the only person speaking up.

This is a situation of just being like an alien in exile, not understanding which rules applied in which situation. It contributed greatly to perpetual exhaustion.

What I am saying in this, is that just living as an autistic in a neurotypical world is an exhaustion creating reality. One could easily interpret it all as just complaining about how life is, and I suppose some will always consider that that is what is occurring. However, to those I would say, try to imagine your life, as though you walk around seeing everything through a translucent or opaque reality and every moment you have, every interaction you have is an academic, emotional exercise in assessing what the rules of this interaction will be and select from your known rules the best one. And that’s before the interaction actually happens.

I can only truly speak for myself in this, but I imagine it is similar for other autistic people too. None of those interactions come naturally or automatically. They just don’t. And they don’t, not because they can’t but because society has taught that our natural response is not different but the wrong one.

Our so called diverse and open society and its rules are in fact very narrow and quite closed. Ostracising occurs pretty darn quickly when you get them wrong.

T is for Tired…

There is a sense, well that’s how it seems anyway, that we autistics can just learn to be typical. And to a point there is some legitimacy in that, however, from my point of view, that way of acting and being will always be an act, a persona, a costume put on. It is not natural and it is tiring and exhausting. And there is a catch, and, I think it is a big catch.

The catch is that as we teach autistics and neurodivergent people so-called social skills, interaction rules, workplace rules,

conversation skills, whatever you want to call them, we build up the plethora of information to be sorted through and analysed in every situation before being applied.

The catch is that as more resources like this are provided, using those resources contributes more to the level of tiredness and exhaustion we experience.

The catch is that to use these resources is like going in and out of a mental filing cabinet for every interaction and finding the right file, then the right document in that file and then, hoping against hope we have made the correct decision and we are not about to commit a social faux par.

All of this makes me incredibly tired. Exhausted, in fact, and sometimes it gets all too much and all that I can do is retreat into my cave. To kind of shut down and just recharge with doing pretty much nothing.

T is for Tired…

S is for Sensory

S is for sensory

Sitting, straining, struggling to deal with it all,

A bright light shines through the high windows and skylights. The glare and light flickers and bounces of the reflective balloons. The mixture of scents emanates from the kitchen. The ringing of the bell-like toys in the infant play zone, the ceiling fans buzz and the air flows in multiple unpredictable directions.

Sitting, straining, struggling with it all.

Tables scattered around the cafe area, bodies moving in all directions, kids squealing with delight as they play. Groups of parents in multiplicities of conversations. Fluorescent lights a buzz with activity. A seemingly random buzz of some machine-like contraption providing power or something to the various activities.

Sitting, struggling to not shutdown or meltdown…

Attention continually diverted to the different goings on. Filtering impossible as the sensory environment is awash with input and ever changing. The bashing of a hammer as a young child plays the ‘wack a mole’ game. The calling of a parent to their child across the centre.

So many inputs and nothing like the capacity to filter and integrate this.

Just a short observation of the environment that exists at the local indoor play centre. I am here with my daughters. It’s one of those things I avoid, due to all that sensory stuff, but, it is also one of the things I push myself to do for the sake of the joy and laughter and fun it brings.

S is for sensory…

I walk through the shopping centre. Bodies go everywhere in some seemingly random dance. The hum and buzz of the centre is a gradual build up to overload. The anxiety is instantly on the rise at the moment of entering the centre, perhaps already on the rise at the realisation that the trip will be made. Overload builds gradually, snaking and sneaking its way to the surface.

A person stops dead in front of me in the middle of a walkway, a group of parents decide to have a conversation in the middle of the aisle. I have to focus to negotiate that difference of bodies in space and orient myself, avoid smashing into them. It irritates immensely, I mumble my irritation to whoever is with me.

I don’t want to be in that centre, alas, though, I need to be, I have chores and errands to complete. The overload is brimming at the surface. It is time to bolt, I must get out, before, it is a disaster trip and not just a difficult one.

S is for Sensory…

I make for the exit to the carpark. As I speed my way as fast I can I am sure my walk looks exceedingly awkward, the wide malls of the centre become narrower with the mass of humanity moving in such random patterns, and narrower still by the extra cart stalls and fundraisers plying their trade.

A fundraiser approaches, I simply cannot deal with this interaction at this moment I must get out, I need to get out, to solace and withdrawal. I raise my hand in a stop fashion, it is ignored, the hawker keeps coming and begins to talk, I manage to mumble no thank you.

The hawker ignores this, continues forward towards me, into my space. I simply am unable to cope with all of this sensory input this invasion into my circle of safety space around me is the last straw. I snap…

Words come tumbling out, as though I have lost total control of my processes of communication.

FUCK OFF. I exclaim it for all to see.

Embarrassed I attempt to walk on with some scraps of dignity left. As I walk on I hear laughter and rude comments.

I turn and then I see this hawker pointing at me, laughing at me, with his co-worker I hear them exclaim words of “what an asshole, what is she a retard or something?”

Again I snap. I march up to him and yell in his face, to back off, ask him if he is simply too unintelligent to understand that when a person puts up their hand to stop you should stop….

A moment of clarity and all around me people are looking and I realise I have lost it again. I have snapped and complex mix of anxiety, sensory input, frustration and justice have yet again taken hold.

I turn and run, I get to my car, I am in a state, almost hyperventilating, I get in my car I sit and try to breathe, overcome with the intensity of it all, and I sob. Some unknown minutes later I manage to be in a state to drive home. I drive home and I retreat to my room, my cave.

S is for sensory…

The above situations are as honest and factual recounts as I can muster of difficult sensory situations I have encountered.

The sensory issues for neurodivergent people is a very real struggle.

It is a struggle for me and I would consider my own personal sensory struggles to be fairly mild in comparison to many other autistic people.

I can’t imagine how difficult those situations can be for others, but I know how difficult they are for me.

Sensory overload is a very real thing. It may be difficult to quantify, but it is real, it is intense and it is debilitating.

S is for Sensory…

Whatever you can do as an ally/family member to mitigate the sensory difficulties and struggles for the autistics you love and care for is a valuable gift to them. Don’t ever underestimate the impact it has.

S is for Sensory.