Autpoia — Autistic Nation Awareness

You may not know this but in 2007, it was the United Nations General Assembly who declared 2 April World Autism Awareness Day. The idea was to create awareness and support this particular protected ‘minority’ group. Big organisation, small group.

Celebrations

March/April seem to have become a collection of neurodiversity awareness and celebration days/weeks. I did a number of presentations last year on autism around the same time and I was part of some panels and talks this year again. You won’t be surprised to hear that I was super focussed on the numbers and the statistics that were contained within my presentations.

Before I proceed I should say, I am autistic (high functioning, or Aspergers in old money).

But so what?

Autistics are a minority group, so fuck ‘em! Why do they count? Why should schools, employers or the government care at all? They can’t look after themselves. They’re disabled. They need help. They need medication and institutionalisation. They don’t have any empathy, like ‘normal’ people. Why do neurotypicals have to make more allowances for yet another bloody minority group? Haven’t they done enough? Why can’t autistics be normal? It’s not loud, it’s not bright, stop attention seeking. There aren’t even that many autistics. They don’t ‘look’ disabled, so why all the fuss?

You may be shocked to know that I have had all of these arguments levelled at me about autism in one way or another in my life, and much worse.

Some neurotypicals think that there’s little benefit to supporting such a minority group who just seem odd, and “don’t look disabled”. They don’t know that we spend most of our time with them masking, consciously, until it becomes automatic and subconscious. Until it becomes part of our programming — a very hard thing to undo. Just adding to our invisibility.

Many neurotypicals have none of the empathy they speak so endlessly about, laud over us with such contempt and claim to hold in such high regard. It’s easy to be angry at them but it’s not entirely their fault: humans (especially neurotypicals) spend most of their lives looking outwards, not inwards, so they miss their own biases and prejudices. Lecturing them or demanding that they take responsibility for the perceived harm they and ‘their kind’ have perpetrated historically, or making toxic claims like calling them ‘neuro-prvilaged’ is not the way to mend fences, rebuild bridges and any number of other remediate analogies. It just builds more fences somewhere else and builds a new generation of resentment toward us.

You fix nothing by trying to make others feel small and guilty for something they’re probably not even aware they’re doing.

Consideration, awareness and education (with a sprinkling of enforcement) are the best methods. That is not to say we should take discrimination (deliberate or unconscious) sitting down, but like all minorities, we should engage in honest and open discussions, without judgement. We are equals after all.

Self Advocacy — only for some…

Many bodies, governments and organisations think that openly ‘supporting’ autism is a great cause but it’s often just a woke, virtue signalling opportunity or a legal/HR requirement. They talk grandly about how important the autistic difference is, but have a look and see how many autistic are in leadership positions or how many autistic groups are actually run by autistics — it’s little to none! Which is ironic because the point I’m rambling towards is that autism numbers are a lot bigger than you might think.

This is where we see unintentional, but still inexcusable, ableism (not a word I like to use). How outraged would the world be if a women’s group were run by men, or if a black group were run by white people? Why then is it ok to ‘meh’ an autistic group with little or no autistic representation? Why is it ok to excuse this travesty with “but we’re advocating for autistics and helping them”?

This is a classic example of the road to hell being paved with good intentions, and tolerating the ‘disabled’ label simply makes it much, much worse.

We need to take more control, take confidence from our fellow autistics and be assertive in this regard because we don’t just have the intellect and rationale, we have the numbers to do so as well.

The Numbers and Realities

Diagnosis: For every diagnosed autistic there is at least 1 undiagnosed autistic, and women are so poorly diagnosed that it is likely there are two undiagnosed autistic women for every one diagnosed woman. That means that 3 in 5 autistics probably go undiagnosed, and that’s likely to be a conservative number.

I found an old study that had looked at this (https://active-but-odd.tumblr.com/post/54771436416/data-tidbits-how-good-is-self-diagnosis) and it was interesting that the numbers even back then were similar to 3 in 5 going undiagnosed.

Many countries don’t even diagnose autism at all, or they discount adult autism altogether.

However, for the purposes of this post I’m just going to stick with the recorded numbers of confirmed, diagnosed autistics. Just the facts, because I don’t want to exaggerate and we don’t need to sensationalise these numbers. They’re already sensational. Just remember that in reality these numbers are very likely to be more than double this.

Diagnosed Autism Numbers

There are geographic differences in the percentage of the population diagnosed with autism. There are many factors at play here from the efficacy and appetite of the nation in assessing them, to the potential genetic traits of the local population, to the cultural stigma and personal damage of coming out as autistic.

In the US and UK for example, diagnosed autistics represent approximately 2–3% (This is more in line with the expected true number). In Bulgaria, currently, as soon as you become an adult you are no longer treated as though you have autism — who knew that the simple application of bureaucracy could make you neurotypical? Wait…bureaucracy and neurotypicals…hmmm, is there a link? In many countries diagnosed autism is 0% because they don’t diagnose it.

A more general number is available from the World Health Organisation (WHO), who have done considerable work on this. Their last assessment, published this year (2022) states that on average 1 in every 100 people is autistic, globally. This percentage varies greatly depending on where you look (the CDC for example estimates 1 in 44 — greater than 2%. But again, I am looking at this conservatively, not trying to sensationalise the numbers)

* 1% of the world is autistic according to the WHO

I remind you again, this is the average percentage of the global population who are ‘diagnosed’ with autism — it does not include the invisible undiagnosed, which would more than double the number.

What That Means

Well lets work that out:

World population: 7.9 billion (circa. 2022)

1% of 7.9 billion = 79 million

* There are 79 million (diagnosed) autistic people in the world

Perspective

To put that into some perspective, whole country populations that are less than 79 million:

UK — population: 69 million — the whole of the UK could be filled with just autistic people and we would still have to find housing for another 10 million (there are only 9 million people in the whole of London)

Australia — population: 26 million — there are more than 3 times as many diagnosed autistics in the world as there are Australians — Yet they’re fuckin’ everywhere. Kidding, kidding, I love Australians ;)

Canada — population:37 million — If Canada were the autistic nation we would more than double it’s population overnight.

Poland — population:38 million

Spain — population:47 million

France — population:65 million

Germany — population:83 million — we could nearly fill a country like Germany with just autistic people.

Minority? Autistics? I Don’t Think So

Autistics are not a minority, we are a nation. For the sake of this post let’s call our nation Autopia, and issue every Autopian their own passport.

Of the 235 countries in the world, Autopia would be the 20th largest nation (conservatively — based on currently diagnosed autistics ).

I know I said I wouldn’t speculate, but as an exercise, if we added the likely undiagnosed autistic number it would make Autopia the 8th largest nation in the world, only beaten by China, USA, India, Indonesia, Pakistan, Nigeria and Brazil, easily beating out the 228 other countries on the planet.

What Do Autopians Look Like?

We look like you…we’re black, white, male, female, short, tall and we’re everywhere >:)

It truly is an equal opportunity difference. There’s no discrimination if you’re an autistic.

What would Autopia be like?

I thought I’d take a little detour and allow myself to hypothesise what Autopia might be like, if it were a single nation and given the natural traits of autistics: intelligent, honest, loyal, funny, sarcastic, more sensitive than you might think, not easily offended, direct, fact driven, detail oriented, stimulation hypersensitive, independent, proactive, great integrity, low empathy, are non-judgemental, don’t discriminate and whilst they share a common clinical diagnosis, they are often as different from each other as neurotypicals are from each other.

  • I would suggest Autopia would be a peaceful, quiet, equal, progressive, honest country with no discrimination, no political correctness, no psychodrama and no crime.
  • It would be a cultural and scientific leader.
  • Education and healthcare would be free and highly valued, as would their practitioners.
  • We would care for those of us who cannot care for themselves, because contrary to popular neurotypical stereotyping, we are very empathetic to other autistics (https://reframingautism.org.au/miltons-double-empathy-problem-a-summary-for-non-academics/)
  • Media would not be held to account for the damage they do to the young, the impressionable, the innocent and to society in general, because they would only report unbiased facts, honestly. And there would only be the need for one channel. An idea NTs will find hard to get their head round.
  • Crime would be non existent and everyone would have a job. Autistics are natural rule followers (provided those rules are true to their purpose, have integrity and make sense).
  • Tolerance wouldn’t need to be demanded or enforced, it’s a natural state for those who don’t see superficial differences and have experienced a life of intolerance themselves.
  • There wouldn’t be a lot of eye contact (“what’s so normal about staring at someone’s eyeballs anyway?”). Nor a lot of loud noises, bright lights or woollen clothing.
  • It would be ruled without bureaucracy or personal agenda, there would be honest debate, not partisan politics. Decisions would be best for society, not for the individual.
  • There would be one political party — the party of the best data and you could actually believe what it’s leaders said — they wouldn’t lie, even if you didn’t like what they were saying. They would implement the greatest desires of the society, not the partisan desires of an ideology.
  • Rules would be implemented that the majority agreed with and everyone would follow them, not just try to find loop holes.
  • People would genuinely care about each other.
  • Rules would be enforced without exceptions, with consideration but without ‘excessive, unhinged’ empathy that countered them for no reason other than being seen to be a ‘good person’ in the short term.
  • Economically it would be a powerhouse of the greatest scientific and technology minds and innovations.
  • Creatively it would be a utopia.

Generally, it would be filled with happy, fulfilled Autopians.

Different, not disabled

Autistics are just different, yet they’re treated like a disabled minority, when they’re not. 79 million confirmed autistics can’t be wrong.

The ‘gifted’ range of the IQ scale (the top 2% of IQ) is 130 and above. Research has shown that 16% of autistics fall into that range, where as only 2.3% of non-autistic humans fall within the same range.

Autistics are told they’re disabled by those who disable their integration into society and the world in general because much of it simply wasn’t built for or by them. It’s hard to change that when there’s so little self-representation and self-advocacy.

Being told we are disabled under these conditions is like comparing men and fish in a house building competition. It’s like being condemned for not drinking by an alcoholic. It’s a privileged, self-serving, inaccurate lens through which to make a comparison. There are vastly more disabled neurotypicals in the world.

Autistics are told they’re ‘not normal’ by those who’s words and actions should not be accepted as ‘normal’.

Autistics are under represented and very often prevented from self advocation or representation, when they are willing and capable of self advocacy. This would never be suggested for or tolerated by any other protected ‘minority’ group.

Paradoxically, autistics have well above average IQs and yet some of the highest unemployment and collateral mental health problems of any protected group, falsely reinforcing the neurotypical view that we are disabled. We are no more disabled that someone who is tall is disabled. We’re just different, see and interact with the world in a different way and have a different set of strengths and challenges.

Assumption replaces understanding when autism is treated as a mental disorder. If you think only autism comes with a percentage of disabled individuals then fill a room with neurotypical Love Island and Jerry Springer fans, add a sprinkling of religious leaders, some politicians and football fans and see who displays the greater number of mental disability markers worthy of prescribed medication and incarceration.

Take Aways

If you’re neurotypical

Remember that you meet more autistics than Australians every year. They might seem different or odd, they might not talk about football like it’s a religion, they might say honest things in a direct manner that you will be offended by, but they are good people and you’re probably surrounded by many self serving, back stabbing, passive aggressive neurotypicals. Autistics will never treat you that way. They’re loyal, honest and bright. They will challenge and change your lives, your businesses and your minds if you accept them and don’t judge them because they don’t think like you.

If you’re autistic

(Or if you think you may be — get tested btw, you might just be weird — joke, joke) remember that you are part of one of the largest, most diverse, most intelligent, most honest and most invisible nations in the world…you are not alone (which is not something that autistics generally care about). ‘I love chainsaws and maybe 3 people’.

When neurotypicals lash out at the at our unfamiliar behaviour it is a primitive and instinctive response, as old as humans themselves. They do it before they think. Stand up for yourselves, but do it without anger. It’s in our best interests to continue to create awareness of our strengths, differences, needs and challenges, not bow down or compromise in order to fit in. Celebrate your strengths — show them off proudly you wonderful weirdos :D

The important thing to keep in mind is that despite being on the receiving end of these primitive reactions, they are wrong (morally, contextually and intellectually) and thus it should not be allowed to stop you moving forward, it should not be allowed to undermine your confidence and it should not be allowed to give breath to your anxiety.

“It is the habit of mediocre minds to condemn all that is beyond their grasp”

Francois De La Rochefoucauld

I encourage you all to change because you learn, not because others tell you you have to, or to try to be ‘normal’ like them. You’ll often find yourself condemned for the things you do or say by the majority in the room, but in a room full of sheep I believe it’s far better to be the wolf.

* In a room full of sheep it’s better to be the wolf

If you are autistic (Autopian) then please join the Autopian group on LinkedIn.

Here’s to the autistic nation, Autopia, and the millions of unique, world changing individuals who make it up. You see things that others don’t, fix problems that others can’t.

Now, we just need a medium sized country… where did I leave those invasion plans…

References and Additional Information

Some of these are research done recently and some in the 20-teens :

https://www.un.org/en/observances/autism-day

#autopian #autism #seanmcsharry

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UX Consultant, Mentor, author, leader, speaker, founder UX Sanctuary

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Sean McSharry

Sean McSharry

UX Consultant, Mentor, author, leader, speaker, founder UX Sanctuary

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