She could hear from the psychologist: "Child, you are not a psychopath, but I don't know what's wrong with you." It seemed "strange" to doctors. "At one point I said out loud," Guess what, I think I have Asperger's Syndrome. " I remember that at first there was silence, and then such short sentences were uttered by my friends: "Hey, probably not …", "Maybe …", "Yes, a little …", "Well, probably really …". In those days, Asperger's syndrome was the subject of scientific and clinical research. And not something you thought about in the context of "ordinary" people - recalls Joanna Ławicka. She found out that she had Asperger's Syndrome when she was 28 years old. At school, she barely passed from class to class, today she is a special educator, doctor of social sciences and president of the Prodeste Foundation.

"He dresses almost only in black, and is most happy if he can buy several pieces of the same garment at once. Hates cottage cheese, but eats cottage cheese with taste. Her favorite drinks include cherry Picollo and energy, but only those that taste like candy "- this is the information about her preferences on the website niezosmita.pl.

- How old it is - Joanna laughs.

- Then what do you like now? - I ask.

- You know a little has changed, but not everything. I still prefer cottage cheese because it's a matter of consistency. This one I am able to swallow, I do not like white. In general, when it comes to nutritional issues, I have had them very specific since I was a child. Of course, along with the political changes, because I was born in the 1970s, my preferences have changed as well and I am convinced of a few new flavors, such as sushi, but I always feel a certain resistance to trying new things - he explains.

Joanna, apart from white cheese, doesn't like most drinks that typical people drink. - Sometimes I drink a Coke, and there is only one of the energetics I like. None of the others are drinkable because they are either too sweet, too sour, or have a smell that is too irritating to me. I don't really like sweet at all. I sometimes eat a cookie or candy from time to time, but they are really small, she says.

- What about that black color? - I'm asking.

- Sometimes colors creep into my wardrobe, but black still predominates becauseI feel good in it - he explains.

When Joanna was a child, her parents did not suspect that she might have Asperger's.

- I found out myself when I was 28. My parents couldn't have suspected it because when I was a child, no one diagnosed Asperger's Syndrome. Nobody even heard of him. At that time, only autism was diagnosed, and most often in people with intellectual disabilities - says Joanna.

Asperger's syndrome (AS) is often incorrectly called the disease. Nowadays, in the context of the autism spectrum to which AS belongs, even the term "disorder" is avoided.

Currently, scientists around the world postulate the term ASC (autism spectrum condition), which can be translated into Polish as a state in the autism spectrum. On the autism spectrum, people develop from birth to death, and this developmental condition is considered to be one of the possible, not worse, variants. Some people on the autism spectrum are disabled, while others manage their lives on their own.

Very talented child

Joanna noticed very quickly that she was different from her peers.

- I was aware of that. I didn't like participating in classic preschool games. I couldn't cope with them. Anyway, to this day, when I think about them, I find them not very attractive and pleasant. As a 4-year-old, I preferred reading books than having fun. But these were not only fairy tales from the series: "Read to me, Mom." I definitely preferred reading for young people, books by Adam Bahdaj, "Ania z Zielonego Wzgórza" or the classics of Polish literature - Joanna recalls.

She was considered a "very gifted child" throughout the kindergarten. She went to school earlier than her peers.

- That's what the teachers from my kindergarten and kindergarten decided to attend, but I also wanted it very much. During a conversation with a psychologist who was to assess whether I could be sent to the first grade earlier, I reacted enthusiastically to the question: "Do I really want this?" And then? Then this talented child did the worst, got the worst grades, and when he tried to prove that he knew something and asked for answers every now and then, he was silenced with the words that "you don't do that and you have to give others a chance to answer" - says Joanna.

She admits that when she went to school, she hoped that her life would take on new meaning. Meanwhile, she was getting hit on all sides. From Monday to Friday, she was accompanied by emotions such as anxiety, misunderstanding, and confusion. She did not understand the unwritten school rules, especially those that governed the grouppeer.

- I think to myself that if I had grown up with a diagnosis, I would have saved myself from growing up in the identity of "moron", "misfit", "moron" or "crazy" - he says.

These were the epithets that children used to describe her, but sometimes also adults. He doesn't like talking about his school memories. He is aware that these were different times, different realities, and people who acted in this way and did not otherwise, today may have a completely different awareness of similar situations.

Besides, he refrains from telling examples from his own life so as not to provoke unnecessary comparisons of current parents of young children developing in the spectrum.

- I can tell you about an event that nowadays has no chance of happening, so no one will say "my child is like that" or "it does not concern us". We had a teacher who came to the lesson and when he did not like anything or did not like him, he used the educational method of hitting our hands with a ruler. One day, as he walked through the classroom and hit people with collective responsibility, I felt more and more anxious every minute. At some point, I jumped up from the bench, knocked it over and ran out of the classroom - says Joanna.

The school was located in an old building with very high thresholds in the door. Terrified, she stumbled, fell over and hit her head on the floor, losing consciousness.

- When I woke up, I think all the teachers from the school were standing over me. I am telling this story to illustrate how incomprehensible certain social conventions are to people like me. Other children, I would like to point out, that they were raised in those days, had the resources to understand and somehow come to terms with the situation. They probably didn't feel comfortable, but they understood it was a kind of convention. The child reaches out, the teacher hits. There was no such mechanism in me. There was a growing wave of fear, reflexive, I would even call it an animal, a panic reaction to what was about to happen - Joanna explains.

Permanently torn knees and torn pants

When asked if there really was an area in her childhood where she did not feel rejected and different, she replies that she was relatively okay in scouting.

- Concrete tasks, well-defined structure, in which there was not much room for spontaneous behavior as during those games in kindergarten or in the yard. In the forest, at camps and rallies, even a particular tendency to fall and slack off did not offend anyone.

- I was indeed a child who always had torn knees,bruised elbows, bruises, torn pants. I was stumbling over my own legs, bumping into objects - she recalls.

Although she has problems with coordination to this day, there came a moment in her life when she did a bit of martial arts, yoga or climbing for her own pleasure. It cannot be said that she trained or played sports. She just liked these activities and understood that they were conducive to her well-being.

Joanna points out that although most people with Asperger's syndrome have problems with motor coordination and different body sensation than most people, this phenomenon cannot be generalized in one hundred percent. There are plenty of athletes among people on the autism spectrum. One of them is the outstanding footballer Leo Messi, who in addition contradicts the stereotype that such people cannot cope in team games.

- They not only play, but also like it a lot and can, as you can see, master it. Personally, I know a few girls and boys who train football in the team in Warsaw. In Italy, on the other hand, there is a whole club of inclusive football. Some prefer team games, others individual sports. Why did I choose such disciplines? Because I just like them. I often make people realize that people on the autism spectrum have character, personality. They are like other individuals who do not fit into commonly accepted stereotypes and cannot be treated as a museum object bearing the sign "Asperger's Syndrome". This approach upsets me a lot - he explains.

During her high school years, her life took on a slightly different dimension. It was then that I met people, just like me, fascinated by theater and art. I started to perform in amateur theaters - he says.

Joanna was passionate about the theater from the age of eight. Already in elementary school, she knew that she would want to try her hand at acting. After graduating from high school, she studied at the "L'art" Theater Study in Krakow for a year.

- I had great determination to do this. I was focused on the goal. After a year of studies, I passed to the Theater Academy in Warsaw. It was customary in the acting faculty that some people were expelled after one year of study. Like many colleagues, it happened to me too. I heard from my babysitter of the year that I do not fit the actor's profession in terms of character.

The words were spoken: "You should write books, paint or become a director with your sensitivity, but not an actress." Then I was disappointed and sad, but years later I agreed with them - says Joanna.

She was still trying her hand at acting. For a year she worked at the Jewish Theater in Warsaw and studied at the Center for Theater Practices in Gardzienice.

- It was veryintense time in my life, I was very committed to it. What fascinated me the most in acting was exploring the role, figuring out how the character I should look like, how to speak, what character should I have. I liked the fact that I was able to stand next to me in some way and look at a person, this personality that I am supposed to play - he says. Additionally, working with the body is an important element in theater education. It was very difficult for me, but very important and developing. Classical ballet, modern dance, fencing, acrobatics, rhythmics, folk dance - it was an amazing school for a man who spent most of his childhood walking with ragged knees.

From graphic designer to educator

There came a moment when she gave up on her own. Why?

- I couldn't cope in a highly competitive environment, and that was the acting environment. I found it not for me. To this day, I think that it was a very cool and important element for me of working on both myself and social relations, but at some point it overwhelmed me - she says.

For a few "short years", she says, she was looking for her place. She didn't really see herself in classical studies. The primary and secondary school experience did their job.

- Name things by their spells. My education was a trauma and I worked it for many years later in psychotherapists' offices. The possibility that I would have to go back to sitting in the pews, even at university, was a terrifying vision - he recalls.

She worked as a computer graphic designer for three years. She took jobs and did them at home.

- My social anxiety grew so that I had trouble leaving the house. I realized that this is not good for me, because I will stop having contacts with people, and it will have a really destructive effect on me. So I started to wonder what I could do, what I could study, not only to leave the house, but to learn something that would give me satisfaction - he says.

Then she remembered an episode from her childhood.

- When I was 13-14 years old I was a volunteer, a bit of a baby sitter, a bit in the then popular groups of volunteers helping in the home rehabilitation of disabled children. I felt very good with them, and they felt very good with me. I helped in rehabilitation teams, but I also used to take care of them so that their parents could go to the cinema, go for a walk, or run some errands. These memories directed me towards thinking about pedagogical studies.

I read, analyzed and found it to be a cool direction. I submitted my documents to the University of Warsaw and toTo everyone's surprise, not only did I get on it, but I was first on the list. Me, the worst student ever, with an average of just over three on her Matura exam. Five years after graduation, without the possibility of studying for the exam, because I was already the mother of nine-month-old Weronika, I was collecting the index from the hands of the rector of the University of Warsaw, at the ceremonial opening of the academic year. - he recalls.

Joanna studied in Warsaw for a year. Then she moved to Poznań.

- I did it for personal reasons, but also because I was able to study special education there. Due to my great results, I was quickly awarded an individual course of study, thanks to which I completed five years of study in four. It was a good time, full of development opportunities and left me with a lot of beautiful memories and important contacts - he says.

"I think I have Asperger's syndrome"

Two years after defending her diploma, when she was already working as a teacher at a center for children with an autism spectrum, she was sent to post-graduate studies at the Synapsis Foundation. It was another breakthrough in her life. As it turned out, not only professional.

- During one of the conventions, I sat at the end of the room listening to a lecture about Asperger Syndrome. I remember that everyone was surprised by what was discussed and shown in the movies during it. And for me, their excitement was a surprise. I thought to myself - This is how my life looks like. What do they see in this strange? ”

As we were driving back from that exit in the car, at one point I loudly said, "Guess what, I think I have Asperger's Syndrome." I remember that at first there was silence, and then such short sentences from my friends' lips: "Hey, probably not …", "Maybe a little bit", "Well, probably really." In those days, Asperger's syndrome was the subject of scientific and clinical research. And not something you thought about in the context of "ordinary" people - recalls Joanna.

Joanna had contacts with psychiatrists and psychologists since her teenage years. When she was 16, in the department of pediatric neuropsychiatry in Opole, where she ended up due to a neurological disease, she seemed "strange" to doctors. Strange enough that it was decided to use a psychiatric diagnosis.

Several weeks later she left the ward with a neurological diagnosis and … a diagnosis of a psychopathic personality. She was referred to psychological therapy. The attending psychologist disagreed with such a diagnosis, but she was unable to make a different one. She used to say to Joanna very often: "child, you are not a psychopath, but I don't know what's wrong with you."

The term "there is something wrong with him / her" to this dayit causes sadness and frustration in Joanna. Due to the specificity of her development, she did not avoid depression and anxiety disorders typical of autistic people.

When, at the age of 28, she again came to the treatment of a depressive episode, the attending physician, based on a very detailed interview, first suspected and then diagnosed Asperger's syndrome. It was several years after she expressed her doubts in the car, returning from a convention in Warsaw. She has also had several years of working with children with a spectrum behind her. She saw the similarities, although not obvious, because she taught autistic people with serious disabilities.

In 2008, she initiated the founding of the Prodeste Foundation, which she has been managing since 2013. Initially, the Foundation de alt mainly with helping autistic children and their families, but with time its activity began to evolve significantly. Currently, it is the only organization in Poland whose main goal is to build a social space for the full inclusion and validation of autistic people, regardless of their intellectual or he alth condition.

She decided to "come out" as official as she called it only after she wrote the book "I'm not an alien. I have Asperger's syndrome. "

- I wasn't sure if I wanted to do it or if anyone would need it, but after talking to one of my friends, I changed my mind. She told me that if I want to be honest with the people I work with, I should do it. "You put yourself in the position of someone who wants to help them, give them some strength, a sense of hope that their life can look worthwhile, and at the same time you want to hide the fact that you have Asperger," she explained to me. And indeed I came to the conclusion that if I hadn't, it would be hypocrisy on my part - he recalls.

This decision resulted in a wave of criticism and hate. She has heard from many people that she "promotes her diagnosis". Or that he "fakes autism".

- I was prepared for it. Fortunately, it ended after a while. I am very grateful for the support of important authorities in the field of human development. Especially Dr. Michał Wroniszewski from Synapis, who came to the premiere of my book in Warsaw. I'm sure that was an important signal for people from the so-called "environment" - he says.

In the following years, Joanna started with a group of friends and associates to implement projects for the development of self-adjudication in Poland.

- Together with other people on the autism spectrum, we organized lectures and seminars that were conducted by people just like us. Currently the environmentautistic self-advocates in Poland are beginning to be clearly visible. There are autistic lecturers, people using their first and last names in the media. They are anonymous to the public, but very important bloggers, artists, and visual artists who pass on knowledge about their experience. There are adults and teenagers. Thinking about people on the spectrum has changed a bit in Poland in recent years, but in my opinion we are a bit unlucky. For decades, we have become rooted in the concept of disorders and the need for treatment / therapy. After receiving the diagnosis, the parents of an autistic child start making pilgrimages to offices and offices. Seeking help, they are more and more locked up, together with their child, in the image of autism walking on two legs, requiring something truly special. In this way, something that is most important is lost from our sight. So a man - he emphasizes.

Canceled lesson

Joanna emphasizes her full understanding of the fact that judgments often become the only mechanism that allows for any support for the child.

- I recently talked to the mother of a 6-year-old girl who only needs one thing to function in a kindergarten without any problems. That the teacher draw her before class and write down what will happen step by step during the day. It turns out that it is impossible to overcome on the part of the teacher. The lady considered it a whim. Meanwhile, people with Asperger Syndrome, especially little ones, need framework and order. It happens that sometimes a change in the timetable or the cancellation of classes destroys the sense of security. It is related to the specificity of development of autistic people - says Joanna.

- Fortunately, there are more and more parents and specialists who accept the fact that this particular child develops differently, and is not sick or disturbed. I believe that this approach is simply unfair. Among people on the autism spectrum, as many as 38% are disabled people. Often very seriously disabled, needing really special help and support. But disability, including intellectual disability, also affects non-autistic people. And they also need a lot from their surroundings.

On the other hand - in the autistic population, about 18% develop intellectually above the norm. In the general population, there are about 4% of such people. Again - this is a special group! A man with above-average abilities needs much more support and help than a typical, normative person. How can we talk about autism? My colleague, Krystian Głuszko, who has already died and who is the author of great books, which I highly recommend -he had such a nice humanistic term. He spoke of "autistic beauty." I like it very much - says Joanna.

The world needs diversity

Joanna has three completely non-neurotypical daughters. Two are teenagers, one is an adult. When asked if autistic people should have children, he is indignant.

- I don't understand how to put the matter like this. Of course, if an autistic person decides that they do not want to have children, it is their choice and they have a right to it, just like any other human being. But many people on the autism spectrum disorder have children and raise them very well. This environment usually has a problem.

Meanwhile, the world needs diversity. Also, neurodiversity. Thanks to people who have the ability to go beyond the generally accepted framework, we push the development of culture, science and art forward. On the other hand, people in need of care teach us that providing mutual support is a good for civilization. They show that each person is a value in itself. We no longer confine people with physical disabilities at home. For years, there has been a belief in the social consciousness that it is important that they can move around in the same space. And this is a huge value - says Joanna.

Joanna Ławicka, in November last year, she published another book addressed to parents and specialists. "Man on the Autism Spectrum. A textbook of empathic pedagogy ”. He is currently working on two publications - a practical guide for parents of young children and a difficult and important book on violence.

Category:

Psychiatry