Neurodiversity movement in Estonia: The quest for a win-win situation
April is World Autism Acceptance Month, and cofounder of the Estonian Association of Autistic Women Birgit Soans tells Jerry Mercury about the autistic self-advocacy movement in Estonia.
April is World Autism Acceptance Month, and for those who are not familiar with this topic first-hand, I would like to address two questions. What do you know about autism? What is the first thing that comes to your mind when someone you are talking to tells you that he or she is autistic? Sadly, even though we are deep into the 21st century, most people, including some medical professionals, are still under the influence of rather harmful stereotypes regarding what autism is.
Unfortunately, for many people, the only source of information about autism is the movie "Rain Man," which has shaped the image of autistic people in general. Along with the stereotype that all autistics are savants, the most common misconception is that an autistic person is an intellectually disabled child (usually, a boy) who has difficulty communicating, or does not speak at all. This stereotype, which brings to memory William Faulkner's character Benjy Compson from "The Sound and the Fury," in most people evokes nothing but contempt, condescension and pity. Personally, I see at least three problems with this stereotype. Firstly, it is high time society understood that people like Benjy Compson should be treated with dignity in the same way as anyone else. Secondly, not all autistic people have intellectual disabilities, just as not all those with intellectual disabilities are autistic. And finally – all autistic people, regardless of whether they are intellectually disabled or not, are different, and there are no two identical autistic people just as there are no two identical non-autistic people.
In the last few decades, a movement has emerged that seeks to show the inadequacy of this view on autism. This is the autism rights movement which was initiated by autistic people themselves and is based on the neurodiversity paradigm that strongly suggests that diversity of minds and brains should be valued. The neurodiversity paradigm has become an alternative to the widespread medical pathologizing view of autism as a deficit, disorder or even a disease. The activists of the movement – autistic self-advocates – state that autism is not a pathology but a healthy variation of the nervous system. Within this movement, some new terms were coined – "neurodivergent" to refer to people who are autistic versus "neurotypical" or "allistic" to speak about those who are non-autistic. Yet autistic self-advocates recognize autism as a disability – not for medical but for social reasons.
Why is self-advocacy needed, and why is it so important that autistic people themselves lead the narrative about this issue? For society to accept autistic individuals and fully embrace the notion of neurodiversity it is necessary that those of us who do not have the experience of autism would be able to see ourselves in the shoes of an autistic person. There is no other way to learn about this neurotype, except by listening to those who are real experts in the issue – not to the doctors, most of whom are still full of prejudices, but to people with first-hand experience who are able and ready to share it.
Another reason why self-advocacy is so crucial is that there are still plenty of autistic people who live their lives undiagnosed and are unaware of the fact that being different from the majority is totally okay and that it has a name. Autism can also often remain invisible to medical professionals, who, under the influence of old stereotypes, tend not to see a person's autistic traits as they can be hidden because of autistic "masking". This term denotes a survival mechanism of concealing the features of autism that autistic people use sometimes knowingly, but most often unconsciously, to be accepted by society. It is important to note, however, that in the long run, masking is very harmful for autistic individuals as it wears out the psyche and leads to burnout. So, it is only through self-advocacy by autistic individuals, that undiagnosed neurodivergent people who feel that they are different from the majority, may get access to the information on this topic. This in turn might help them to stop thinking of themselves as neurotypical failures and learn to embrace their own neurotype instead.
As the autism rights movement is developing at different rates in different countries, and in many regions not much has been known about it so far, I wondered whether there are any autism-related organizations run by autistic self-advocates in Estonia. Luckily, I was introduced to Birgit Soans, one of the founders of the non-profit organization Estonian Association of Autistic Women (Eesti Autistlike Naiste Ühing), who agreed to give me an interview about the situation in Estonia.
This is how Birgit introduces herself, "I earn my living as a translator. I lead a carefully curated quiet life and enjoy nature, solitude, animals and have surrounded myself with a select few wonderful humans."
When and how did you realize that you are autistic?
It happened when I was around 26 or 27. One of my long-time friends had started to seek a diagnosis and suggested I might look into it too. At first, I started reading about autism just because I wanted to understand and support my friend, but it turned out to be a journey of self-discovery. The more I read, the more I had eureka moments like "how could they describe me so well?" When I had collected a mountain of evidence, I took it to my psychiatrist and after a spirited presentation she just said, something that I still remember to this day – "When autistic people explore something, they always do it extremely thoroughly." And this is how I got my diagnosis, at the age of 28 or 29. Finally, I had the answer to my life-long question "why am I so different?" and it was a huge relief.
As I understand, you are well-read on the topic of autism. Do you find time to read fiction? Have you ever associated yourself with any literary characters?
I haven't read much of anything apart from literature about autism and psychology in those last years, but I'm fond of Victorian horror, especially M. R. James' works. And when I was a kid, I related mostly to Sherlock Holmes.
When and how did you start your self-advocacy?
Soon after I received my diagnosis. I had accumulated so much information on the subject, and I had also joined several biggest autistic spaces online but they were all international. And I really wanted to connect with other autistic people here, in Estonia, because I had been feeling so isolated and alone for such a long time and wanted to find others like me. Unfortunately, it turned out that it was not possible. I contacted one of the autism-related organizations, the biggest one at that time. I asked them what kind of resources they had for people like me. And what they told me was that basically, they had nothing. They were dealing with kids and adults, it seemed, had been totally forgotten. I realized that if I wanted a community, I needed to build it myself. That's how it started.
Usually, when advocating for autistic rights, they say that autism is not a deficit but a disability, and although many activists argue that there is nothing wrong with being disabled, for the vast majority of people in the world the concept of disability is still associated with something utterly negative. But if we shift from these arguments, are there any unquestionable advantages that you find in being autistic?
We are disabled not because we objectively lack something but rather by obstacles in society: inaccessible environments, myths and preconceived notions about autism and unsuitable (neurotypical) expectations. Also, autism is a disability because we are a minority in an allistic world, but as a group of people with differences we of course bring our share of value to the table. As for advantages, an autistic brain processes the world in a more detailed way and is more aware of details. Our monotropic minds can focus on things that interest us in such a way that we can become experts. Our sensory differences can also be an advantage in areas where sharp senses are needed. Autistic people are like everyone else: each one of us has something to offer. As for me personally, I have used these abilities to be good at my job, both as a translator and an autistic activist. Being aware of and sensitive to the world I live in has given me insights into how to approach activism. And the ability to focus on my interests has given me the knowledge and skills to do that job.
What are the basic principles that you adhere to regarding your self-advocacy?
My colleagues and I have always prioritized building a community. First of all, we had to find other autistic people and get them to exchange thoughts so that we wouldn't be isolated and lonely anymore. And secondly, we wanted allistic (non-autistic) people to see and hear us because we felt that our voices deserved to be heard. Up until that moment allistic people had always spoken for us and not always the way we found to be objective or beneficial.
Also, we felt that the dominant deficit-based model of autism never described the real experience of autistic people. That is why we built our activism on the principles of the neurodiversity movement and have stuck to those principles since then. That means we see autism as a normal neurological difference that is valuable and necessary for the optimal performance of the human species – as we say in Estonia, diversity enriches.
In addition, we dedicated ourselves to combatting false or biased information about autism and, unfortunately, there is a lot of it.
Why is your organization called the Estonian Association of Autistic Women?
We wanted mainly to focus on women and people assigned female at birth as they are the minority among autistic people. The existing diagnostic criteria were created to describe white cisgender boys, so other groups have always had difficulties when seeking a diagnosis. We also appreciate self-identification since a medical diagnosis might not be accessible for some people because of heavy masking, lack of resources and other factors.
What activities do you do together?
We are not many and we do not have many resources at our disposal. So, our focus has been on moderating our Facebook groups "Autistide oma pesa" ("Autistic people's own nest") which is a safe space for autistic people and "Autism: küsimused ja vastused" ("Autism: questions and answers"). We are also focusing on debunking biased or false information on social media and on several occasions have been invited to speak about autism in other organizations. We also hold annual general meetings for the members.
Why is it important that such organizations are run by autistic people themselves?
It is important to lead such organizations on our own, so that our voice, our experiences and views would be the ones that prevail because other people do not see autism from the inside. They are just observers and as such they cannot always know what is in our best interests. They can be great and wonderful allies but it has to be our voice that is the loudest. It has been historically very hard to make ourselves heard, so we are very protective of that little space we have claimed.
How would you describe the general situation with autistic people in Estonia? Is there enough understanding in society of what autism is?
When we started our self-advocacy about 10 years ago, there was no alternative to the deficit-based view on autism in Estonia. But since then, the situation has become a lot better. Nowadays, off and on we can hear people using words like "neurodiversity," "neurominority" and "allistic" – the concepts we once introduced here – and it feels wonderful. But it would be wrong to say that general understanding is great. There is still a lot of room for improvement and lots of autistic people still have to battle with myths in their everyday life.
What are the most common harmful myths about autism that you would like people to reconsider and reject?
Oh, there are a lot of them and they all are rooted in the idea that autism is a disorder or damage. The first myths that come to my mind are that autistic people lack empathy and social skills, that we are not smart and that we are all intellectually disabled. Unfortunately, many people tend to dismiss or deny our experience by saying that everyone is "a little bit autistic," implying that a person cannot be autistic unless their autistic traits are glaringly obvious. And some even use the word "autist" as a derogatory term.
Does the government support autistic people? In your opinion, is there anything that could be organized better, so that autistic people would enjoy more equity in society here?
I don't think I have noticed any support. Based on our experience, it would be very helpful if there was, for example, a representative who would communicate with autistic-led organizations and help us find and acquire information and resources and bridge the gap between autistic self-advocates and the government.
Autistic people, including myself, very often have a lot of other, severe disabilities and health issues because of chronic lifelong stress and traumas and that means our personal resources (money, health, time) are very limited. As a very vulnerable group of people, we really need our government to be more proactive in recognizing our situation.
Without such support autistic self-advocacy, irreplaceable and valuable as it is, cannot sustain itself endlessly despite the huge demand for it.
What is the approach to autism in the Estonian healthcare system?
A lot of doctors still see autistic people through the lens of the pathologizing model. It means they may have a hard time adjusting their language and attitudes in a way that is respectful and safe to the patient. As most autistic people have trauma and conditions like PTSD and CPTSD, it is very important for physicians to offer trauma-informed care. Unfortunately, it is a very new concept for Estonian doctors. It has not spread much, although there are also some wonderful practitioners. As for psychiatrists, in my very recent experience, I encountered some of those who can be unsafe and worsen your condition significantly by treating you unprofessionally when you disclose you are autistic.
So, would you advise autistic people to disclose their neurotype when visiting a doctor?
In my experience, it has not always been beneficial to disclose my autistic identity to doctors as their attitude can become infantilizing. Also, they can see you as less reliable in describing your health conditions. This of course will affect the quality of care you receive and create trauma and subsequently aversion to seeking medical help in a timely manner in the future. This is a big problem as many of us have chronic health issues and need regular medical care but because of the reasons mentioned before we might not have adequate access to them. So, in my opinion, although it might be important for a doctor to know that the patient is autistic, because medications often work differently on us and we also have sensory and interoceptive differences, an autistic person should be cautious and in each particular situation decide if it is safe for them to disclose that information.
How would you like society to change to make the environment more accessible for those who are autistic? What can each individual do to make the world (and Estonia in particular) a better place for autistic people?
The environment that is more accessible to autistic and other disabled people tends to be more accessible to all, so it would be a win-win situation. Less visual and auditory noise, healthy and inclusive school and work environments, greater recognition and acceptance of differences between people, more nature in urban areas, a calmer pace of life, and better access to services and support – all these create a more humane society that is easier on all of us.
We should believe people when they say that something is difficult or different for them and we should focus on finding solutions instead of looking for who or what is to blame. And certainly, we should stop thinking that autistic people are inferior. If we were to describe allistic people using the same language that we use to describe autistic people, we would find that allistic people are quite defective. So, let's think more about the language we use and embrace diversity because only a society that understands the value of differences is truly successful and modern.
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Editor: Helen Wright, Marcus Turovski