- How do adult autistic people live?
- Diagnosis: autism
- Adult autism in Poland and abroad
- More than half of autistic people are afraid to leave home. The problem is the lack of acceptance and maladjustment of public spaces
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Autism in adults has many faces. It is difficult to describe an adult autistic, as it is difficult to classify the disease itself. Ania from the diagnosis: "autism" was actually happy. She was always different. She didn't understand why, and it was bothering her. Now - when she knows - life is easier for her. Karol, on the other hand, has not said a word about his illness to this day, because Karol - although he hears - does not communicate with the world through speech … This is one of the manifestations of autism in his case.
Adult with autismis most often associated with the movie Rain Man - an autistic person played by Dustin Hoffman. A genius who can solve complicated mathematical problems in his mind, but at the same time is introverted and clumsy.
Many of us, when we think about autism, see a child through our eyes of imagination - intelligent, but socially maladjusted, often even a little genius ignoring the world around him, locked in his shell. But have any of us wondered what happens when a child grows up?
Types of Autism and Autism Spectrum Disorder
Autism: causes, types, symptoms, therapy
Late symptoms of atypical autism
How do adult autistic people live?
Few people can answer this question. And perhaps rightly so, because those who live with autism know that there is no single answer to this question.
- Autism spectrum disorders are like colors - not only are there plenty of them, but each of them has a whole range of shades. How many autists, so many problems. One thing is certain: no two cars are the same - says Elżbieta Duława, mother of 22-year-old Karol.
If Karol were to talk, he could introduce himself with the words: "Hello, I'm Karol and I have autism". But Charles won't say that. He has not spoken since he was a child. Not because it can't. He doesn't speak because he doesn't want to. A few years ago, however, Karol felt the need to communicate with the world. The boy sits down at the computer and - regardless of spelling or grammar - writes.
- When he was a few months old, I noticed that my little son is not looking at me at all, and when I take him in my arms, he does not hug. I already had two older children and I knew something was wrong - says Elżbieta.
Karol found a doctor. The latter reassured his parents that Karol was premature (he was born in the eighth month of pregnancy) and everythingit will come to normal over time. It did not come.
- When he was eight months old, he looked like a deaf child, playing only with jar caps. And then there was self-aggression. He used his hands to beat his head or hit the floor or walls with his hands, recalls Karol's mother. It was the beginning of the 90s.
- The first neurologist said that Karol had a severe mental retardation, that he would be gone and he would end up in a closed facility. I remember these words like today - recalls Elżbieta. There was a breakdown. But after him, the will to fight appeared.
Karol's parents decided to continue diagnosing their son. Karol has undergone specialist examinations. It turned out that he could hear perfectly well, and genetic tests showed no abnormalities. You found a psychologist. This one had no doubts.
- We got addresses to Krakow, where they worked with such children. Karol and I traveled every three months and we were taught how to work from home. Karol was changing slowly, he didn't fight like that anymore and sometimes he looked at us. After several years of painstaking work, he ate, walked and even smiled himself. But he still didn't speak. Years passed and nothing. Therefore, it was suggested that Karol go to a speech therapist. And so we got to Mrs. Ania.
- Already at the first meeting, we realized that Karol does not want to learn to speak. He showed that he wanted to write on the computer. It turned out that the son knows all the letters. He sat down and began his notes. The joy was great. I cried with happiness - recalls Elżbieta.
What is Karol writing about?
- About everything. About what happened that day, what made him happy and what upset him. Exactly what other children talk about at dinner with their parents - says Elżbieta. Karol's notes are an important clue for his parents - thanks to them they know what their son wants, what hurts him, what he dreams about. But Karol, although he lives with his parents, does not want to write to them. He writes his notes to Ms Ania, a speech therapist. He "talks" to her in writing.
- 6 III 2012
I can't get married because I have autism and who would want me? I will spend my whole life "nourishing" other lives. It means "eating out" the life of mom and dad and brother and sister and second sister.
- 17 IX 2012
My class is cool and I even have interesting lessons. Lessons about life and work and my illness and how to learn to write, somehow, except me. I don't speak, because I can't get the noise out.
Ania Brummer-Para is 38 years old. She hates when someone calls her "Anna" or "Anka". She completed her musical education at the former WSP, today the UniversityRzeszowski. He has been living in the Netherlands for 13 years. He has high functioning autism with symptoms of Asperger's syndrome. She was 34 years old when she heard the diagnosis.
- I have always felt that I am "different", but this otherness could not be defined. Therefore, the diagnosis was not the end of the world for me, but a turning point in my life. For the first time, I received an answer to the fundamental question that has been haunting me for years: "who am I?". I accepted it, just like my husband, with relief, because it opened up new opportunities, gave answers and hopes - says Ania. Today Ania knows how to define her "otherness".
I don't understand words spoken by several people at the same time, and although my hearing is good, my brain cannot distinguish between sounds
- Autism is a different way of thinking and processing information. I see the world in detail, but I never get instructions on which of them are important to others in creating a complete picture. Hence, I often see things invisible to neurotypical people, but I miss something obvious to others - says Ania. How is this manifested on a daily basis?
- I have no sense of time, I cannot function without a calendar and a clock, I cannot divide my attention, if I do not do something immediately, I can forget about it for weeks or even months. I stick to certain schematic behaviors that allow me to "slow down" a bit - Ania lists in one breath. Sensory disorders are a significant obstacle.
- I don't feel thirsty, I can't bring myself to drink pure water, which, contrary to popular belief, has a specific taste and smell - there are situations when I don't drink anything for more than a day without realizing it. For an hour after waking up, I have a strong auditory and visual hypersensitivity, any sudden movements and harsh light, speaking too loudly can almost drive me crazy - he says.
She quit a satisfying job to be able to take care of her 9-year-old son who also has autism. - I had a fantastic job, but when I do something, I want to do it one hundred percent well, and the division of duties did not meet my personal quality requirements, so I quit - says Ania.
Ania is convinced that autism was her asset when she was professionally active. - Once I got a replacement for school of life on the recommendation of a methodologist from my studies, although I had no preparation for work in this type of institution, but I did not disappoint my confidence and autism was definitely a plus here.
In the "leading" position, autism is an advantage, it only makes it impossible to work in a team. People with autism, when they have a goal, know exactly how to achieve it, and withstep by step towards it with great commitment.
- And they do it consistently - says Ania. Quitting her job to raise her son does not mean that Ania has ceased to be active. - I play the cello, piano, flute and recorders, I love to crochet, I make decoupage decorations, I train with my son's therapeutic dog and most importantly - I run a blog autizm-tygryskowo.blogspot.nl, through which I try to articulate that autism is not so terrible how they paint it and that you can live with it - says Ania.
Adult autism in Poland and abroad
Ania has a comparison of how an adult autistic lives in Poland and abroad.
- The differences can be seen with the naked eye. In the Netherlands, there are many possibilities for diagnosing adults, and after the diagnosis, there is also the possibility of obtaining support, mainly in understanding oneself, analyzing one's own disorders against the background of social norms, or in the form of various support groups conducted by both professional therapists and autistic people themselves.
Ania makes no secret of her disease. "I don't have the" autism "tattoo on my forehead, but I talk about it as easily as I talk about the weather, she says.
A woman admits that whenever she talks about her autism, it arouses interest, but in a positive context. - I think where I live now is of great importance. People here are more open to any otherness - she adds.
It is not so colorful in Poland. After graduating from junior high school, Karol attends the first class of vocational training - the memorabilia profile. He wants to feel needed, do something worthwhile, get an education.
- That's why he gets up at 6 am every day, eats his beloved porridge for breakfast, goes with his dad to the bus stop, goes to school with his friends. When he comes back, there is always someone waiting for him at the stop. I quit my job to always be with him. We are very proud of Karol that he has come this far. But we are aware that, unfortunately, our son cannot function alone. As my husband rightly said, there must be a guardian angel behind him - then he feels confident. We are aware that due to his illness, Karol will always arouse a sensation - says Elżbieta.
Karol's parents dream of issuing their son's notes. - It would be good reading for those who do not know what is going on in the head of an adult car. Perhaps thanks to it they would discover that an autistic person is also a person who thinks and feels. And that, just like us, it is easy to hurt him - says Elżbieta.
Everyone wants autism to stop being fearful and incomprehensible. - I appreciate that autism has started to be talked about, but it bothers me that in various campaignsinformation, trying to evoke not only understanding but also pity. The most negative behaviors are shown. Why does the media focus on autism as suffering? Why don't they show adult autics who have succeeded in overcoming their own weaknesses? Are they not the proof that you can live with autism, that it is worth helping even severely disturbed children, because thanks to this they have a chance for a happy and valuable life? - Ania asks.According to an expertRenata Werpachowska, a psychologist from the Synapsis foundation working with people with autism
Autistic people were and are excludedAmong autistic patients there are people who seem to be independent and completely dependent on the help of others. But with a little goodwill, everyone can feel needed, have something to do.
Unfortunately, autistic people do not actually have a job. Karol is the worst - low-functioning, speechless. Their situation is the most difficult, because not everyone has a place for occupational therapy workshops, and apart from the workshops, there are no proposals for them. But they should not be excluded as well. Because they have potential, willingness to act, and the work itself gives them pleasure.
We can offer them very simple tasks - packing, sticking, photocopying, destroying documents or winding up screws.
However, this requires the work of another person beforehand, there must be someone who will stand at the back and see if they do a given activity well, help if necessary - because autistic people are not able to ask for help themselves. They have no instinct to ask someone. If something happens, they stop. And the end.
A huge advantage is that autistic people have a great ability to duplicate activities mechanically, they do not get bored. They can repeat the same pattern many times and do not feel bored with it. On the contrary - it gives them a sense of security.
Unfortunately, there are no institutions in Poland that will take care of adult cars. This has to be created by the parents again. And sometimes they don't have the strength anymore. And they have the right to be tired - they created kindergartens and schools for their children themselves.
More than half of autistic people are afraid to leave home. The problem is the lack of acceptance and maladjustment of public spaces