Autistan: metaphorical country, concrete support

Article of “Revista Autismo” (Autism Magazine) (Brazil)
https://www.revistaautismo.com.br/geral/autistao-pais-metaforico-apoio-concreto/

Autistan: metaphorical country, concrete support

Autstão Day 2019 - Autism Magazine
 
Autistic people gather in Rio de Janeiro to celebrate Autistan Day

In line with the celebrations of World Autism Awareness Day – established by the United Nations (UN) for April 2, the Autistan Diplomatic Organization, a non-profit institution with several points and supporters in the world, promoted the Autistan Day in Copacabana, Rio de Janeiro, this past Sunday (31).

At the time, autistic people from different states of Brazil, in person and virtually, discussed topics of free choice at various round tables. Among the debates were topics such as neurodiversity, diagnosis, prejudice, autistic women and self-acceptance.

The person responsible for the event was the Frenchman Eric, 54, who classified the schedule as the most difficult day of his life. There were more than 10 hours focused on call management and transmission, made simultaneously on YouTube and Facebook, to be watched in different places in Brazil.

Dialogues

Embassy of Autistão - Autism Magazine

The idea of Autistan Day came only two months before the event itself. Despite the rush, Eric managed to bring together different autistic people in different positions in autistic mediactivism – such as youtuber Leonard Akira, podcaster Erika Ribeiro and teenager Zeca Szymon – to talk about the topics that interested them.

“They were very collaborative, very patient, very nice. This is the magical effect of Brazil, the people are more human, more open, nicer and kinder. Brazil, in my opinion as a Frenchman, is a very advanced country in terms of rights for autistic people”, he said.

The event started at 11:00 a.m. and continued until 9:30 p.m. The schedules were divided into short lectures, comments and also included details about the Autistan – a metaphorical concept of an autistic country. In addition, the audience was able to follow the broadcast on the organization’s YouTube channel and Facebook page.

The proposal, according to Eric, was complicated for execution. “There were more than 10 volunteers, but the event involved a lot of technology, interactions and it was extremely difficult. We’re not used to doing things that complicated with the computer”, he said.

Originally the event would have a connection with the Journée de l’Autistan, which took place simultaneously in Belgium. However, transmission issues caused schedule changes. Despite the impasses, Autistan Day maintained the participation of all planned autistic persons.

“I was very stressed and afraid of having technical problems, but it’s my way of doing it. Because when you think too much, you think it’s impossible and you don’t do anything. But we managed to do something really cool and solve the problems together,” he added.

Support

It is impossible to dissociate the Embassy of Autistan, physical site of the Autistan Diplomatic Organization, from the figure of Eric. After leaving France after the Paris terrorist attacks in 2015 and renting a 45 m² apartment in Copacabana in February 2017, the space receives and supports autistic people from different parts of the country with its own resources.

Eric, in the past, was a travelling figure and with many stories. He was in the 2003 edition of Guinness World Records, was in countries such as Russia, Egypt and Kazakhstan, is polyglot, was a DJ for 15 years and adapted to social life as far as possible. For more than two years, in Rio de Janeiro, he said he was happy with the change and he avoids appearing in photos.

The Frenchman lives with Shree Ram, a young Nepalese man whom he met on one of his trips in Nepal and who accompanies him in Autistan and in Brazilian life. “We have a friendship we couldn’t imagine. It’s like another mother’s brother. We are very happy here,” he said.

A neurodiverse aid in Eric’s life is Ludmila Leal, who has an autistic brother and has generally collaborated in the organization. “This is the way for humanity. The only way to peace is this, for people to accept and put themselves in the place of the other,” she says of the importance of differences.

It was intended to try to understand other autistic people that Eric made as many adaptations as possible for the guests. Geuvana Nogueira, for example, is part of the Autistic League (“Liga dos Autistas”), has dietary restrictions and travelled from Campo Grande to Rio. In the capital, she was assisted by the organization and the other autistic people present.

In Rio de Janeiro, Geuvana said she had experienced challenges. “I got out of my comfort zone, it was delicate. But I believe that when we can accept ourselves and look at each other as autistics, the other autistic is not difficult. It’s like everyone’s already getting to know each other.”

Eric reiterated Autistan’s mission. “We want to collaborate with anyone, whether autistic, families or organizations. We are an autistic organization, extra-national, that is, not linked to any country, with a global vision to support national activists.”

Participants of the online broadcast of Autistan Day 2019

Stories

The backstage days of Autistan Day yielded meetings and experiences for the participants. Erika Ribeiro, podcaster for Erika’s Small Talk, recognized the event as a kind of watershed in her saga to “come out of the closet” that dragged on significant part of her 39 years of age.

“I was diagnosed at the height of my career at the age of 22. I went to law school, worked, and that gave me an abnormal mental confusion. I went to get psychiatric help and ended up diagnosed with ADHD and Asperger’s. I decided to come and put my face right away and let’s go!” she said.

Most of the participants of the event were adults, except Zeca Szymon, a 14-year-old teenager, accompanied by his mother, Magaly Botafogo. On the other hand, Geuvana has two adult children, and sees her position as something different from most non-autistic mothers.

“One of them doesn’t live with me. When he gets home, there’s a very big nuisance. I hate being held, and I suffocate. And you don’t identify yourself anymore, but he is your son, you like him. But I’m learning to deal with it. I raised them to have their lives. It’s not my life, it’s his one”, she explained.

Youtuber Leonard Akira said autistic potential should be exploited. “Autism, for the part of parents, is considered a taboo and a limiting factor. They think of all the difficulties that the child will have in life and discrimination. If a parent has a more hopeful view of the child, he sees the advantages and disadvantages of this condition.”

Ludmila, who followed everything behind the broadcast cameras, approved Autistan Day. “The more events that show different ways of living, of thinking, of living together, of accepting, the better. [We need] to end intolerance, which is spreading in civilization, and right now it is of paramount importance.”

Podcast Introverting — episode about Autistan Day

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Journalist, autistic and creator of the podcast Introverting (“Introvertendo”).



Closing clip:


More details about the participants



Presentation of the Autistan, autism, the Autistan Diplomatic Organization, the concept of Autistan Day, and the events “Autistan Day 2019” in Rio de Janeiro.

(Introduction of the event of 31/03/2019 at the Embassy of Autistan in Rio de Janeiro)

Welcome to the Autistan!

1/ What is the Autistan?

The word “Autistan” (translated to Autistão in Portuguese) is simply a name, invented by our Autistic French friend Josef Schovanec, in 2014.

This name literally means “the country of the Autistic people”, like “Kazakhstan” means “the country of the Kazakhs”.

A “country of the autistic people” or a “world of the autistic people”, this is a metaphor for actually talking about the specific things of autistic people: different ways of seeing the world, different ways of thinking, sensitivities and special qualities, the original creations of autistic people, etc.

When you can “enter the world” of an autistic person, for example when he explains his thoughts, passions, works etc, or simply, without speaking, sharing his “inner peace” or “innocence”, you will move into a “mental referential” very different from your usual referential, that of the “standard normal world”. So, after this experience, you’ll get the impression that you’ve made “a trip to Autistan”.

Using the name “Autistan”, as a kind of “virtual country”, allows more things than with just the word “autism”, because “Autistan” gives a notion of “place”, and this is very interesting for autistic people, because, in our whole life, we have an impression of always being foreigners, without any “proper place”, the impression that in every social place, in every social situation, you will have a problem, a discomfort etc. which is very close to reality, unfortunately.

Thus, the idea of “a country for autistic people”, even if virtual, can help autistic people to have hope, to start to have confidence, which is indispensable to stop feeling more or less “inferior” or “sick” or “people with a disorder”, or “bearers” of something etc.

The Autistan is a virtual or metaphorical country, but it is not an imaginary country, because all this exists really, unlike, for example, the country of the Smurf (“Schtroumps”) (which we could call the “Smurfistan”) (“Schtroupfistan”), which exists only in the imagination.

Thus, the word Autistan is a way of naming something that exists: autism, which is not an imaginary thing.

If we try to go a little further, to get things less “virtual” with the Autistan, we have several possibilities.

– First, there is the notion of “autistic people” or “autistic nation”, which makes sense because autism has something genetic and hereditary, and we believe that autistic people are born autistic, which corresponds to the etymology of the word “nation”, and also, even if each autistic is particularly unique (which is the result of our resistance to standardization), we also have things in common, specific to autistic people, which makes that an autistic person from one country will understand well other autistic people from other countries, when we can put ourselves further away from the “social or cultural layer”, closer to the Autistan, to our nature.

– Secondly, if we want to seek a kind of “physical country” for autistic people, we do not need to get a piece of land on the planet, because this is difficult but also because we want to be able to live anywhere on the globe, like others (but with respect for our sensitivities and differences), without segregation; so we can simply say that each “personal place of an autistic”, each “autistic refuge” (like a room) can be seen as a part of the “global physical space of the Autistan” : we just have to declare this, to have a few square meters that “belong” to the Autistan. For example, here, every square meter (rented) of the first Physical Embassy of Autistan in the world is a “territory of the Autistan”, even if this is not official according to the usual conventions.

– Thirdly, we can say that autistic people are mentally in the Autistan when their thoughts are “in autism”, away from the social referential and from social communication.

In this way, each autistic has his own piece of “Autistan”, usually without knowing it.

When we talk about the “world of thoughts”, we mean consciousness, and even more abstract things.

There are very abstract things, without anything material, but which are actually existing, such as love.

When you are “lost in your thoughts”, when you “come back to reality”, you don’t know how long your “mental journey” did last, nor where your “own self” was exactly…

Thus, the thoughts and mental references of autistic people may be “in reality” but with a non-social, different approach, or they may also be further away from material things, and closer to spiritual things, closer to truth, purity, etc.

In this way we can also see the Autistan as a kind of “perfect mental country”, or a space of truth, purity and natural harmony, not subject to the rules of the material world that we can feel with our body (the 3 dimensions, and time).

2/ Autism: the fundamental importance of understanding the difference between autism, and the so-called “disorders”

Autism and “disorders” (or related difficulties) are two different things.

– Autism is the specific nature of autistic people, which is “protected” from what I call “Non-Autistic Disorders”.
The autistic person, if “authentically autistic”, less adapted or altered by social conventions, will be living mentally in a kind of “natural referential”, with a personality more personal and more original, and more in harmony with nature, order, justice, truth. He is more sensitive, and at the same time he has a kind of “self-protection” against the social nonsenses and vices, of which “normal” people are victims, unfortunately, living in an artificial social system, disconnected from nature, from the truth etc.

– Autistic people who do things other than that, such as lying, simply do non-autistic things, not representative of autism, because the most authentic autistic people do not even have the idea of lying or doing things to feel superior, to manipulate, to try to imagine what others think of them etc., unfortunately, which I do not blame, because they are victims of this perverted social system.

– So-called “autistic disorders” are simply the results of the global conflict between the two referentials (the natural, autistic, and the artificial, non-autistic).

Given that the autistic people cannot (and should not) adapt well to the artificial system (dangerous for everyone), they have problems, sufferings, crises, because of the lack of understanding of all this on the part of people living within the social standard (which shows every day a little more that it is wrong).

– There are also “disorders” that are very subjective, for example the fact that they prefer to be isolated without communicating too much is seen as a “disorder” only because of the current social system that is based on a kind of hyper-communication fashion where everything is “social”, but in reality the natural preference for solitude is not a disorder, but just a way of being, which is not less worthy than wasting your time on gossip and constant social conflicts.

I do not say that autistic people prefer solitude in general, but in order to prefer to leave the solitude, to get closer to the “social mess”, this system of society has really a lot to do, to look attractive to us …

– Once we understand that finally the so-called “autism” is just a “non-autistic concept”, and that the “normal” system has many, many defects and should not dictate our lives, then we can begin to overcome and to live better, with the acceptance of autism, not as a disease or a disorder to accept, but as our different nature, which is not less worthy than the other differences. Only the current social system is wrong, not the people.

– Thus, we have the right to the respect of our differences, of our original life approaches, of the so-called “autism”. And since all this forms a kind of autism-specific “world,” we can call this world “Autistan”, and see how this tool can help our cause.

– Recognizing that every autistic person lives more or less in his own world, or his own referential or value system, is simply recognizing the truth, and there is nothing wrong with that; but this does not mean that autistic people want or should live just like this, isolated, because as we have the right to difference (like any living being), we also have the right to inclusion, to a life without more suffering than others, to a happy life, which is almost impossible currently, because of the general blockage between autism and non-autism, of the general misunderstanding, due to the fact that non-autistic people believe that the only way to be happy would be to adapt to the standard system, and that autistic people should “erase their autism”, to live as non-autistic, which unfortunately many of them do (with a lot of pain), which is a total nonsense.

– On the contrary, autistic people should strive to preserve their original qualities, and to explain all this, and to obtain from the “normal system” the necessary adaptations. If many people prefer to adapt to a normal system, this is not sufficient to force those who cannot and should not: this would be a form of what I call the “dictatorship of normalitarianism”.

– Thus we must strive to obtain reciprocity in adaptations: autistic people can make adaptation efforts (without erasing their autism, ie. their autistic nature and qualities), but also the social system must make efforts to correct their defects, and so everyone could benefit from it: autistic people with less suffering, and non-autistic people, with a life less gross, less absurd, less violent, with fewer problems, less injustices, less fear of everything etc.

– In other words, understanding better the autistic people, and our sensitivity, and taking this into account at the level of the social organization of the “normal” countries should logically produce positive effects for all.

3/ The Autistan Diplomatic Organization

 – Autistan is just a name, the name of the country or the world of autistic people in the metaphorical sense, but to do concrete and useful things, we have the Autistan Diplomatic Organization, which tries to do everything possible to explain these things and to improve relations between all groups or bodies that want or that should help autistic people to have a better life, a dignified life, which we deserve.

– Since our Organization is not involved in the internal conflicts of each country, we can propose our visions, our tools, our support when possible, in a complementary way to what already exists, when this is useful, and with a global approach that can help the public authorities to better understand the importance of the requests from national activist groups (autistic and parents), for example when we show that this is similar in other countries.

– Thus, the necessary political struggles are made by the national groups of the countries: this is not the role of our Organization, which tries only to achieve a global and universal view on all this, and to propose concepts, frameworks and useful tools, in order to improve the lives of the autistic people of the world, which benefits all living beings in general.

4/ The Ambassadors and Embassies of Autistan

– The fact of having Ambassadors and even a physical Embassy here is very important to show that our Organization is not only “an idea that looks cool”, but something concrete, made to serve.

– And this is good also for the self-esteem of autistic people, when they know that what we do exists, that there really is at least one place made by and for autistic people, without depending on anyone, it helps them feel stronger, further from that idea of “disability” that makes us live as “defective people”, which, very obviously, is a huge problem to live happily and to want to adapt to a society that sees us like walking defects.

– Thus, the general public can also “wake up” when they discover this concept of “Embassy of Autistan”, because it would make no sense to create, for example, an “Embassy of Canceristan”: thus, this helps people to get out of the standard thoughts about autism.

– I won’t talk more about the Embassy of Autistan in Rio de Janeiro,

about our Ambassadors,

about our Goals,

about our List of Fundamental Rights of Autistic People,

nor about our Explanations about autism,

because you can see all this on the pages of the site Autistan.org

5/ Autistan.net

There is also the site Autistan.net, which is “the network of the autistic people of the world”, in other words, the site of the “people of Autistan”. All this starting little by little.

6/ Autistance.org

The Autistan is very abstract, and helps in a relatively symbolic way, in the long run.

But we also have a concept of concrete mutual help, called Autistance, with the site Autistance.org.

Autistance is a word formed with “autistic” and “assistance”, which means “support”.

This concept is based on the idea that every autistic person needs a personal support network, which is evident but which is almost always lacking.

With this tool, we want to help families make these personal networks for their children, organize help with volunteers and better share information, tips etc. and also for emergencies (e.g. crises, or when an autistic child is lost).

All this is a huge job, that we try to start, from scratch.

There is also a first Autistance Club, independent but in harmony with the Autistan, which is starting here in Copacabana.

7/ The Autistan Day

– The Autistan Day is a global concept, imagined in order to have our own “Autism Day”, in parallel to the World Autism Awareness Day of April 2, which was created without consulting autistic people (a bit like creating a world day of women, entirely idealized by men…).

– Generally, the associations in the world that follow the “official” day have that “defectological” approach to autism, such as that autism ribbon, which spreads an idea of “disease”, and there are many autistic organizations that do not like it, obviously.

– In general, the standards ideas about autism are terribly wrong, and this prevents the necessary reciprocal adaptations. For example when the dictionary speaks of “people suffering from autism”: no, autistic people do not suffer from autism, they suffer from the consequences of the lack of adaptations and understanding of autism on the part of the non-autistic social system.

8/ Autistan Day events for 2019

– Given that this concept of Autistan Day is new, this year we have only a few events that try to be in harmony with the all what I explained in general.

In Belgium, today on March 31, 2019, there is an event called “Opération Chaussettes Bleues, en route pour l’Autistan” (“Operation Blue Socks, on the way to Autistan”), in the Royal Park of Brussels, with various activities and lectures, with Josef Schovanec (the creator of the name Autistan, who is our godfather) and with the Ambassadors of Autistan to Belgium and to France.

In Brazil, today we have this round table at the Embassy of Autistan, with you autistic people from Brazil who accepted our invitation to this little adventure, and where you will be able to express yourselves as you like.

This is just a first experience; we’ve never done this before, and technically it’s a little difficult, let’s see.

Perhaps it will be one of the very few, or perhaps the only international event organized entirely by autistic people.

– In the Czech Republic, there is also today a mother of an autistic boy, who is very fond of the concept and who also organizes an “Autistan Day” meeting.

– And next Sunday, April 7, we will have an  Autistan stand in the big event “Day of Good Deeds 2019” in the Parc of the Girl from Ipanema, near the Arpoador Stone, organized by Atados, a volunteering organization which helped us with both events.

I hope I summed up the essentials for understanding the Autistan and about the Autistan Day; thank you very much for your attention, thank you also for the courage to try new things, welcome to the event “Autistan Day 2019” at the Embassy of Autistan in Rio de Janeiro! 

Eric LUCAS

Founder of the Autistan Diplomatic Organization


Video about the Autistan Day and the Day of Good Deeds with the volunteering organization Atados, on 07/04/2019 in Ipanema, Rio de Janeiro: