Follow the Rainbow

Neurodiversity - Follow the Rainbow

Yesterday, 22 May 2015, the electorate of Ireland came out in huge numbers to vote on whether to change our constitution to enable same-sex couples marry. The votes are not yet fully counted but it looks like about 62% in favour of the change. What the LGBT community in Ireland have achieved here is admirable and I congratulate them and all their supporters on the occasion of their historic achievement, especially the great team in Clonmel! None of this was easy I know, and you were magnificent!

More than that, I must thank Ireland's LGBT community for showing us all a path to follow. So, thank you, all of you, for your maturity, dignity, patience, honesty, and bravery.

Some things struck me about this campaign.

Foremost was the passion and conviction of so many straight Irish people who went out of their way to proclaim their support of equality for others. They knew it was right, good and fair and they were prepared to put themselves out so say so. Why is that important? Because it shows that coming out puts a face to an idea, humanises the theory. It also shows dignity and expects respect. No excuses, no apologies, no “passing”.

That dignity and integrity has not only gained the community as a whole the respect of most of the population, it has enabled communication, trust and faith in each other. When this referendum was announced last year, I heard many people say they were in support because it was “the right thing to do”, but many also said “this is what LGBT people want, and that’s why I support it”. That last point is hugely significant. It says “I trust you know what is best for you.”

There is a huge lesson in there for the autistic community. Several lessons.

Also striking was the way the campaign was approached by the Yes side. Unlike previous referenda where campaigning has been focused on TV debates and leaflets pushed into peoples’ letterboxes, the Yes campaign here did two things. They came to peoples’ doors and introduced themselves, not the theory or principles they supported. They also held public meetings, not to make speeches from the podium but open sessions with the theme “I am voting Yes; ask me why.”There was no aggression, no negativity. The campaign was based on love, equality, fairness.

Again, there are strong lessons for the autistic community in here.

It was also remarkable just how many people got involved, both in campaigning and in voting. Politicians have reflected on how the electorate became energised – on both sides. They have mused about what lessons there are for them in their own political campaigns. In doing so they have utterly missed the whole point. This was never a political issue, it was about social justice. This was an issue the the population by and large had clear views on. They simply had not had an outlet to easily express those views. When they did, they did in numbers and with enthusiasm. People flew home from North America, from across Europe, from Asia and Australia just to have their say.

More lessons for autistic campaigners.

So, what are those lessons?

If you want to build popular support for your rights and break down negative stereotypes – be visible.

Come out as autistic on Facebook or at work. Talk to friends about autistic issues as “we have…” and “our community…” as this not only informs people, it links their regard for you to those views. This also means more evident ‘self-labelling’ such as adopting the Âû family name / suffix. Ultimately, that makes autistics real and present in peoples’ lives and breaks down generalised, negative, fear-based ideas about autism.

Act with dignity and respect if you wish to be treated with dignity and respect.

That means not throwing around generalised disparaging remarks about NTs on social media. It means being polite in response to ill-informed opinion. It means being patient in response to peoples’ anxieties and fears. Most of all it means reaching out to invite discussion: I am autistic – ask me about it.

To change society for the better you must get out and engage with that society.

This means not just complaining about your woes on a Facebook group, but seeking out campaigns and being involved. It means speaking to groups outside your comfort zone – parent groups, researchers, school boards, your colleagues at work or college, and even negativity-based organisations and their supporters and sponsors. Invite them to get to know you as a person, not as a demon.

Finally, to make real change requires the broad support of the wider community.

Attempting to enforce change from isolation will not work, even if you hold great political power – which we do not! Three things are necessary: Ability, Inclination and Opportunity. Give society these three things and they will rise up by your side.

Ability: Without the right knowledge, people do not even know they can act, that there is a need for them to act, nor how they can act to effect change. Provide them with that. This is the removal of intellectual barriers.

Inclination: People are motivated to act when something ceases to be arguable but becomes accepted as self-evidently right and good. This becomes something that they want to do. This is the removal of emotional and ethical barriers.

Opportunity:  People become motivated to act because they are presented with an opportunity to act. Create that opportunity. This is the removal of physical, social and political barriers.

We know this approach works, and not just in this referendum campaign. It is time to think more strategically, to empower ourselves with smart tactics. We are not in a hopeless situation where all we can do is throw stones at the tanks of those who have come to destroy us. Far from it.

We have many, many attributes in our favour. Its time to start thinking like we deserve better, then acting like we deserve better.

Pax, ~MAQQI Âû

How Facebook's Anti Bully Policy

has Paved a Golden Path

for Bullies to Thrive

Guest Post by

Kie'Arathorne Âû and Elinor Broadbent Âû

Ironic isn't it, when facebook says it has created a rule to protect people and that very rule is then used to oppress them? What makes it worse is that Facebook is actively turning a blind eye to this.
 
So what is happening you might ask? This is what is happening. Âû (or Âutistic ûnion) was formed on the 5th of November 2012. Its purpose is to actively show the world that we are pro autism and proud of that. This is done by showing the Âû suffix within the social media users name: The name started on Facebook but has since moved to Twitter and Google+ . What does Âû stand for exactly? Well if you believe in the following tenants than you are welcome to add it to your social media account name:
 
1. I am Autistic. (or) I support those who are Autistic.
2. I embrace my Autism as a very significant part of my identity.
3. I embrace those who would sacrifice to protect all Autistic life.
4. I embrace the belief that Autism does not need any "curing".
5. I embrace the self-advocacy goal of "Everything about us, with us".
6. I embrace the definition of Autism as a neuro-social difference.
7. I embrace measures directed at protecting Autistics from attack.
8. I embrace a person-centered approach to all Autism issues.
9. I embrace rigorous scientific approaches to co-occurring conditions.
10. I embrace Autistics leading their own welfare organisations.

But, it seems you are not welcome to add it to your Facebook page. Somewhere along the line something dark and foul leaked into the fold. Every now and then autistic communities are targeted by trolls. They come into the group and they cause havoc, upsetting people and when they are finally pushed out (or grow bored) they lay low until the next attack (or move onto another easy target.) It happens all too often. Some of these are professional troll groups and no matter what Facebook says they thrive on their platform. No matter how many groups are forced to disband the members are never punished and they are instantly allowed to reform under different names. And so they go on and on.
 
The founding member of Âû responded swiftly to these depraved people and as a result they created a vendetta against him targeting him and anything he was associated with, including anyone and everyone who wore the Âû slogan with pride. Their cowardly acts went from propaganda, slander to full on attacks through alternate accounts and they managed to bring others into their folds simply through lies and deceit. They have been on a campaign of reporting anyone with Âû in their name since. Since then there has been a slow trickle of reports with occasional onslaughts. These cowardly keyboard warriors never show their faces, but the signs are easy to spot. Whenever they arrive in a new group reports jump, it's not hard to connect the dots, but it is almost impossible to show any definitive evidence. Ironically many of them use fake accounts to do this, too gutless to show their real faces.

So how can this be? Well put simply they are reporting people for fake accounts. It's as simple as that and is extremely easy to do. It is far easier to report this than it is to report someone for inappropriate content and has an almost instant effect without anyone on Facebook reviewing the account. All you have to do is suspect someone with a fake name and the damage is done. First time it occurs you have to type in your "real" name. The second time you HAVE to provide facebook with photo ID, (because yeah right, we want to give spotless-facebook even more personal information they can sell off.) Your account is suspended until you provide photo ID ,you can't even retrieve your photos or anything, it's deactivated and nobody has access to your wall. There is no room for appeal or avenue you can take to open up a dialogue with facebook about your profile and the reasons why you chose that name. If you solo manage a group/page then you've lost that too, it effectively becomes an unmanaged waste of webspace.
 
I did also have one fake account that was targeted (at the same time as my real). A harmless page I named after a character of my book. I used it for a few reasons. 1.) To co-manage my pages in case something had happened to my real account (hacking etc). 2.) to act as my story/writing communicator (I daydreamed that if I ever published and made some fans than they could friend my second account instead of my real one and I would interact with them, pretending to be that character visiting Earth. It was great fun. 3.) As my work on my book slowed due to other commitments I began to play some games, I chose the second account so I wouldn't bother real friends and family and though it doesn't seem important I invested many hours into that over the years and made some cool friends. Now lost forever ... and why might you add? Because I thought I could interact with the autistic community and write all my troubles and secretes without my real family and friends reading on. It was a privacy for privacy thing. And as a reward I was attacked several times from the very autism group I founded and my account permanently deactivated.
Want some facts:
 
In 2012 it was estimated that 83 million accounts on Facebook are fakes [ref 1] in 2013 it was estimated that there were 67 million fake accounts [ref 2] which amounted between 5.5 to 11.2 percent of the Facebook population.
 
Facebook policy states you are to use one account with your real name. No multiples of your name. Even so Facebooks name policy is a gray area. It states you use your real name, but at [ref 3] 4.10 is says:
 
If you select a username or similar identifier for your account or Page, we reserve the right to remove or reclaim it if we believe it is appropriate (such as when a trademark owner complains about a username that does not closely relate to a user's actual name).
This itself means that in many cases the Âû should be allowed, as the clear majority of users do use their real names with the suffix added so the public knows straightaway that they positively identify as autistic or pro-autistic. The only time it could be affected is if the change questioned is trademarked, ie can be mistaken for some business motif or what not. In this case Âû definitely does not belong to any such situation. It is free to be used in the intention that Âû created it for: Autism acceptance.
 
Another thing to note is that I found it difficult to find solid policy on Facebook accounts. It took me ages to find the terms of service but they don't clearly state things and why. Outside that I found references but nothing more. Such as it is not permitted to pretend to be another person, all the other points seemed gray at best. But nobody is being another person: public or personal. We are all ourselves (and in my second account a character I invented which was linked to my real account via family and pages created.)

All the Âû people want is to display that the suffix on their profiles. Something they are able to do without threat of attack on G+ and Twitter. But instead what we have found is persecution. What's worse is that the reporters have not stopped when the Âû is taken away. They've reported people who have reverted to their original, real names because they know that most people won't provide photo ID to facebook on principle and that their account will be gone forever. Bullies have converted a policy Facebook created to stop bullying into a means of immature harassment that can't be placed back onto them, they have made a simple, efficient and easy means to attack others.
 
Facebook doesn't actually monitor this system in place to "protect us". They rely purely on reports and don't gather statistics about these reports, they don't have any warning system for potential bully reporters, or look into their names.
 
Facebook has created an entire new method for people to attack and harass innocent and harmless communities on facebook. Facebook needs to do something about this flawed policy.

Please, share this around to as many people as possible. Lets make Facebook and its users aware of this abuse of their policies and the effect it is having on those who choose to adopt the moniker or who wish to keep their identities safe.

To view Âû and see what we are all about go to:
https://m.facebook.com/AutisticUnion?ref=bookmark

   Kie'Arathorne Âû
   Elinor Broadbent Âû

__________________________________________________________________________

References:
Ref 1: http://www.forbes.com/sites/davidthier/2012/08/02/83-million-estimated-facebook-profiles-are-fake/
Ref 2: http://thenextweb.com/facebook/2014/02/03/facebook-estimates-5-5-11-2-accounts-fake/
ref 3: https://www.facebook.com/legal/terms

 

Light it up Gold - 2015

___________________

Communication is a funny thing.

Even when we talk, there can be a lack of communication.

However, there is much more to communication than the speaking and understanding of words.

One of the traits commonly attributed to autistics is an inability to recognise or interpret non-verbal signals such as body language and facial expression.
To an extent that is partially true.

The problem works both ways, however, with non-autistics failing to recognise autistic communication as such, or simply misreading it.

This is not at all unique to communication between autistics and non-autistics.

The sunset image here is taken from a photo captured by my daughter last summer while studying in France. French is not her native language, though she is close to fluent. Despite this, I heard tales periodically of communication breakdown - not because of spoken language barriers, but because of cultural differences.

Things she expected to be simple were treated as complex; matters that had her fretting were regarded by the French as straightforward administrative processes.

It was not the language that created communication barriers, but expectations and assumptions.

When we stand, metaphorically, on opposite banks of a wide river it should be no surprise that clear communication is at times difficult to achieve.
We should expect this, autistic and non-autistic alike, but not be resigned to it.
 
There are bridges.

However, unless we expect them to exist, seek them out, and use them to our common advantage, communication will fail.

The obligation to seek new points of contact, to listen, to think creatively - this lies on us all. There is no honour or dignity in assuming there is a fault and that it lies with 'them'.

When we bridge that space, and achieve clear, honest communication we discover how much we really have in common, and how much we have to offer each other.

That is when our communities can work shoulder to shoulder to become a truly unified and mutually supportive society.

It starts when we all listen with open ears, when we look without judgement, ask questions as equals, and respect the ideas and opinions we encounter.

Light it up GOLD for Autistic communication
#LightItUpGoldAu

Light it up Gold - 2015

___________________________________________________

Autistic senses are well-known to be unusual.

Sensory sensitivity is common - a gentle touch can be painful, as can the wrong kind of light or sounds.
This sensitivity is the source of much of the behaviour that is highlighted as unnatural and almost inhuman - avoidance, upset, flinching, even hitting out in retaliation.
But that behaviour is actually very natural and very human.
Everyone will avoid unpleasant experiences, cry out when in pain, and when the misery is unrelenting will strike back in response to injury.
Trying to train people to endure hurt is hardly a solution.
Helping provide a quieter, gentler world instead shows love, empathy, and a consideration for fellow humans.

But sensitivity is not all painful. it is also exquisite, joyful, and subtle in ways that non-autistics find difficult to even imagine.
When you stop, listen, and think about the possibilities presented by people with abilities that seem to be from a superhero comicbook, the world becomes a place of thrilling possibilities:
Knowing the difference between different colours from how the feel on skin, feeling electromagnetic fields, hearing impossibly tiny sounds, lightning reflexes...

That sensory sensitivity is extreme - a word that describes autistic senses well - but there are extremes at both ends of any scale.
The ability to endure pain that would leave a non-autistic incapacitated is also exceptionally common.
Again, think about the possibilities... and how this ability to endure perhaps links directly to living each day with senses assaulted by the uncaring brashness of the modern world.

We ask: how much better would the world be if the non-autistic community had a little sense, showed some sensitivity?
Wouldn't the world be a better, kinder, more exciting place if autistic capabilities were honoured, celebrated and cherished as advantages rather than barriers?

Light it up GOLD for Autistic senses and sensitivities
#LightItUpGoldAu

Light it up Gold - 2015

_______________________

At the heart of every living community lies co-operation.
It is what binds us together, and what links us to the wider world.
We reach out a hand for help or to give help.
We reach out a hand to share. to give.
We reach out a hand for comfort and contact.

Today, of all days (2nd April), I watched a friend of the autistic community reach out a hand to share her work. She had her hand bitten for her trouble.
She had given weeks of hard work - freely offered - for the benefit of all.

Situations like that may seem to show that divisiveness and ego wins...
But in truth they are just an opportunity for the gold-hearted to reach out a helping hand.
The work is not lost - she has good friends among our community!

However, it seems not everyone understands that community depends on co-operation to flourish and grow.

But they are few and far between while we are legion.

So, here's to friends and companions, helpers and hosts, within and without this wonderful community.

Here's to co-operation, and shared success!

Light it up GOLD for Co-operation

#LightItUpGoldAu

#ActuallyAutistic

Light it up Gold - 2015

____________________________________________________

Dignity is central to our lives. So much so, that we often don't notice.
It is a fundamental part of feeling human, being your own self.
When someone denies you a voice in your own affairs, refuses you access, or invades your boundaries, it is your dignity as a human, as an autonomous, independent being, that is insulted.

This is an experience faced all too often by autistics.
It is all too often the experience of others too.
 

Race, nationality, gender, age, disability, sexuality, ethnicity, beliefs... all have been excuses for denying people the dignity all humans deserve.
 

The autistic community is strong and noble at its heart.
 

We will always honour and fight for the dignity of our sisters and brothers within our community.
 

We stand also, arm in arm, strong and sure, with all peoples whose dignity has been stripped from them.
 

Together we are strong, within and without.

Light it up GOLD for Autistic Dignity
 

#LightItUpGoldAu

#ActuallyAutistic

How ‘Person First’ Language Works in the Real World
 
_________________________________


Curtain rises to reveal a faintly but evenly lit, empty stage.

Autistic Man walks slowly on stage pulling a box by a rope.

Several coloured spotlights focus on the box, and follow it across the stage.

On the box is written "Autism".

Autistic Man stops and glances at the box but continues to hold the rope.

He turns to the audience.

He pauses for a few seconds, and speaks.

_________________________________


Pretty much everyone in contact with the autistic community will be familiar with person first language. We say “a person with autism” rather than “autistic” because this puts the person first. That sounds like a good idea. In fact, it does three things.

First, it introduces  the word “person”, to remind us we’re dealing with a person. Next, it puts “person” before “autism”, showing that the person comes first – there’s the ‘person first’ bit. Lastly, it puts “with” between the person and autism – “person with autism” shows that autism does not define the person. That seems to be a pretty good example of how to use language in a positive way.

Score. Woop. High five.

Unfortunately, that's not necessarily true.

Let’s look at that ‘person first’ phrase again, and put it in a simple sentence: "I am a person with autism." There are two things that are apparent. First we see that autism is something separate from the person. This allows autism to be a noun - it exists in this phrase as a separate thing.

Let’s compare the equivalent sentence: "I'm autistic." There is no separation of the person from their autistic characteristics. The focus is placed on a descriptive word. This difference has huge consequences.

When we use the word ‘autism’ our language allows us to discuss it in the same way as other nouns. It gains a identity as a separate thing, and can be described – and is often described – independently of the autistic person or autistic community. Possibly the best examples of this are a range of comments regularly heard from parents of autistic children in particular, but also sometimes from autistics themselves. Here are some examples:

        “She doesn't hate her child, but she does hate his autism." 
        “I hate autism!” 
        “I hope they find a cure for autism.” 
        "Autism is a huge burden on my family.” 
        “Take that, autism!” 
        “My son struggles with his autism.”

What characterises all of these is that they treat autism as something separate and distinct from the person. The first example, copied and pasted directly from a recent online discussion, makes that separation very much explicit. That is only possible in a context where autism is allowed, in the collective mindset, to have an existence independent of the autistic person. Think about that for a minute. We know autism can’t exist as some separate ‘thing’ lurking in a cave or forest somewhere. However, we continually hear it spoken of almost like a separate being.

Now, a lot could be said about how the human mind deals with challenges, with the unknown, with fears, and how this ties in to the way the language of autism is used. That is a subject which I will return to another time. For now, I’d like to focus on a consideration of the role phrases like ‘person with autism’ play in creating a language environment in which the above quotes seem reasonable.

When we insist on the phrase ‘person with autism’ we not only close the door to other opinions and pass judgement on those who hold them, we directly facilitate the very thing this terminology is said to prevent. By separating the person from autism, we allow autism to be discussed without reference to the person, as above. That helps create an unrealistic intellectual environment with unfortunate consequences.

The most glaring examples are therapies that seek to treat autism as a disease, and studies that address aspects of the autistic experience as if autism were an object in a laboratory, facilitating the drive for dead-end and even harmful therapies and studies.

When 'autism' is considered to be separate from the person, rather than part of them, ideas about healing, curing, or recovering make sense - grammatically at least. That, however, directly enables discussions about healing, curing or recovering people from autism: the language make it possible. More importantly, not using that language makes such discussions difficult or impossible.

And that matters.

Perhaps the way to come at this is to look at a few simple examples. Now and again we hear people talk about someone who ‘had their autism healed’or was 'cured of autism', a phrase that suggests an injury such as a broken leg. A useful technique is to try swapping the key word and seeing can we make the sentence or phrase make sense still, so let’s put that into a sentence:

        Louise said her daughter was cured of autism
 
Using 'autistic' we are forced into one of two alternatives:
 
        Louise said her autistic daughter was cured
 
or
 
        Louise said her daughter was cured of her autistic characteristics
 
The first leaves us wondering what she was cured of - some infection perhaps? The second is more explicit, but it prompts its own questions. In both cases, however, the audience is prompted to inquire, which in turn forces the speaker to explain, and to then justify.

Let's take that last example as it drags 'characteristics' into the picture. That's an interesting word. It enables us to use the same sentence construction as the original sentence, swapping 'autism' for 'autistic characteristics', and allowing us make direct comparisons. We could swap out 'characteristics' for other words: attributes, nature, traits, features, aspects. They all provoke the same kind of response: "Characteristics? You don't 'cure' characteristics."

When someone says "I prefer to say I am autistic" it is a decision taken in a context where we are told 'person with autism' is better, and given decent arguments as to why that is so. By choosing 'autistic' the person is not just making a choice, they are going against the received wisom. There has to be a reason for that. When pressed, most people will eventually say something like "It feels right." I suggest that, in a community noted for a preoccupation with language, the above discussion explains the kind of reasoning - albeit subconscious - behind that feeling.

The flip-side of this: when a person talks about autistic characteristics or autistic traits or someone's autistic nature, they are denied the ability to even consider ideas like fixing, curing or recovering.

Instead, even when we are talking about characteristics which present difficulties, the appropriate words are 'mitigate', 'alleviate', 'circumvent', 'overcome'. Even 'modify', a word often used in relation to behaviours, is inapplicable. The characteristics are unchangeable; any issues they present require workarounds, tools or practice, not fixes.

Suddenly the whole environment within which therapies and studies are operating has changed. Now, the person with poor motor skills requires different tools or techniques to achieve a given goal - it is the environment which changes, not the person. That switch of focus is immensely significant.

It places those poor motor skills in the same place as myopia or left-handedness - a difference which, in itself, is not 'bad' but which may require additional or different tools to help that person perform the same task as someone with 'normal' vision or a right-handed preference - glasses or a left-handed can opener, for example.

One interesting consequence is that attention switches from dealing with a single, monolithic thing called autism, and begins to look at the actual separate characteristics of the individual, and to do so in a non-judgemental way, alongside all their other individual characteristics. With that comes respect from society, and dignity for the person, and these are the foundation stones of equality.

So, what of all that expensive research? Without a single target called autism much of it starts to look a little absurd, much like studies into the genetic causes of a taste for spicy food, analysis of newborn eye movements to detect early signs of sporting ability, or development of a pharmaceutical cure for awkward dance moves.

Actually, that last one would be good.

All this arises as a result of a simple change in how we use language.

With this, we are empowered, we presume a right to respect, and we wear our dignity and equality for all to see. More, we disempower those who constrain us, limit our horizons, deny us, disrespect us.

And that, my friends, is why I am autistic, and not a person with autism.

_____________________________


Autistic Man glances at the box and drops the rope.

With a quiet pop sound the box collapses.

The spotlights go out.

A golden glow brightens from stage right.

Autistic Man bows slightly, turns and exits towards the light.

Curtain.
_____________________________