What is life like with autism and Crohn's disease? "I am an old Crohn's sufferer with a childhood disease," says Martin Bílek
Martin, when and how did you find out that you have autism, and when did you start to realize your difference?
About five years ago, autism started to be talked about more publicly in the media, there was more awareness about it, and I found similarities with autistic people, who might have been featured in a story. Until then, I had a similar idea of autism as the rest of society. Plus, I thought I could communicate, act, and have critical thinking skills, but there was a little worm in me that I was nervous about it all and that I had a different effect on other people. I started to notice it most in the hobby - it was the city transport that came up quite often in various reports. However, I initially reacted a bit irritably to various jokes from my family on the subject, saying, "I hope I'm not autistic because of some buses I'm interested in."
At first I didn't want to accept this possibility, I even denied it a little, and it never occurred to me that I might have autism. However, the commonalities were growing - they included poorer friendships and relationships - I had never been on a date with any girl, I got along more with older people or people in the transport industry than with my peers, and I was stressed about going out to social events, parties and the like. Since childhood I lacked any hint of competitiveness and sportsmanship. It annoyed me when I found an item somewhere else or in a different position than where and how I put it. I was also always upset by changes in the program, strange smells and sounds, defects and imperfections on things in my area of interest. I have also registered poor allocation of time, work and poor differentiation of details from essentials. I have a good memory for numbers and an eye for detail - especially with cars and technical items, to the point that many times even the experts might not notice. I was not good at reciprocating love and emotion - I was always "lukewarm" so to speak, I did little cuddling or hugging. I also often admonished people from a young age - whenever there was a breach of order, of rules.
And so I gradually started to look more into whether I really had autism. My surroundings also began to confirm that I had some differences from "normal". After some time, I decided to register for a diagnosis at a specialised clinic called NAUTIS, where I was finally told that I had an exemplary form of Asperger's syndrome. It is said to be a milder form of autism, but there are many forms of autism and it is impossible to say exactly what is more severe for a given person. It's very individual.
Were you afraid of the diagnosis?
Not really, because I knew that they were used to "weirdos" at NAUTIS and that they dealt with differences. That's why I trusted them. I had respect for the unfamiliar environment and unfamiliar people, but I wouldn't call it fear. On the contrary, I was hoping to have my autism confirmed because I believed that through this I would finally know what I was really like.
Did your life change in any significant way after that?
There was definitely a great sense of liberation and hope that I would no longer be a freak and a weirdo. I used to hear that word in school, but now I'm allergic to it. It's the name of a town with a church, not mine. (laughs) At the same time, I also experienced a great relief that I no longer have to be ashamed of myself and that my family doesn't have to be afraid or disappointed that they have a failed son, a criminal, or a future pervert. In fact, the school and the child psychologist who failed to recognize autism once warned, "Well, you have something to look forward to."
I can finally be a person who has Asperger's Syndrome but can work on himself and make something of himself in a field that interests him. When it comes to strangers, I interact with them most in the context of working in the family business. If I feel verbal aggression or pressure from them, I tell them to tone down the intensity and slow down, that it's not making me feel good. And they really start to act calmer, so I feel they have a little respect for my diagnosis. On the other hand, I'm a little surprised by the reactions of some people I know. They knew about me, that I've never had a girlfriend, that I live with my parents, that I don't like to go out socially and that there's just a certain difference. Therefore, they themselves often motivated me to see a psychiatrist because I supposedly made them feel depressed. But after they found out I had Asperger's Syndrome, they completely turned around and I hear from them more like, "Martin, you're a perfectly normal kid like everybody else and you don't look autistic."
What do you think are the biggest myths about autism?
I guess I would include the notion that it is a childhood disease. Then there's the idea that autistic people are brilliant, non-speaking mathematicians. And, of course, that an autistic person has to look a certain way. I always say, "Well, if you think so, try drawing one. The autistic, I think, is also often seen as a person who acts like an unfocused, unfeeling fool. There is also a popular idea that an autistic person is not judgmental, not capable of normal life, of perspective and control over oneself. Many autistic people are aware of their difference and try to work with it and overcome it in some way. Some autistic people are ashamed of their problem, and often even hide it. But if you get to know an autistic person better, you will notice some differences anyway. Autistic people can show emotions, including love. They can be so fixated on someone and love them so much that it can sometimes be a form of addiction.
There's also a lot of talk about rituals in relation to autism. But you didn't include in the myths...
Because I have them, too. Over time, I've seen some of them changed, modified, or replaced by other rituals. But they're still mostly associated with falling asleep or preparing food. That's why I have a big problem with traveling, for example. Unlike others, I have never really looked forward to it, because I have always had a problem with falling asleep on vacation and with sleeping as such. It's similar with anaesthesia and hospital stays. I'd rather take the pain. But I don't welcome it because I have a penchant for some sado-maso practices, I'd rather survive the short-term one that I know the reason for - especially with autistic children I think it's important to explain the cause - I'm learning to work with it and manage it, rather than being under the influence of some substances and neurovegetative states (anaesthesia, opiates). Oh, and the fear of hospitals applies because it is an alien environment. I would need to be alone in my room - I would be uncomfortable sharing it with a stranger, I wouldn't sleep there otherwise. I think it's the rituals that should be taken as a more typical description of an autistic person, rather than the fact that they're some kind of speechless mathematician.
Characters who have some form of autism spectrum disorder are now appearing more frequently in movies and TV shows. Do you think their portrayals are true to life?
I want to reiterate a recurring myth, namely that they are just straight-A students, gifted mathematicians and genius computer programmers who make animal noises, sometimes wet themselves and are unable to be in the presence of any other human, and usually don't even leave the room they were born in with exaggeration. I understand that portrayals of autism spectrum disorders in movies and TV shows with strong emotional undertones are meant to highlight the most general characteristics and symptoms of autism, but they concentrate them into just one character. Unfortunately, the creators of these sometimes very good and interesting films do not take into account individuality and the fact that each person with an autism spectrum disorder is original and, on the contrary, has another set of symptoms that have not even been mentioned or portrayed. I would therefore welcome more projects featuring adult characters that do not follow the cliché that an autistic person is an uncommunicative mathematician. I personally struggled with math, and I know of several other autistic people who also failed the subject.
As for communication, many autistic people write things like poems, quite funny stories, and their spoken language is sometimes amusing, including various puns. Otherwise, I personally see movies and TV shows as a work in progress, a project or a work of art. I examine them in various details - noting technical inaccuracies, locations, and the like, for example - before I can empathize with the feelings of the various characters. I wonder why, for example, cry when someone dies in a movie or TV show, because that death is actually someone else's doing. I can't even understand or appreciate a certain cuteness - for example, when it's an animal that everyone gushes over, shushing it and using diminutives that I don't use much. But I don't like it when someone harms animals, I like to help them.
Zdroj: Giphy
You've mentioned other autistic people a few times. How do you personally feel about them? Do you notice any characteristics of autism in them?
To me, they are people who might understand my problems more than "normal" people. I am therefore less afraid of them than I am of my peers and girls. I don't feel gloating or the need to make fun of them. And if I should start talking to anyone, it should be someone who is also set apart from the collective or has special interests. But when it comes to perceiving the hallmarks of autism in other people, someone else needs to point those out to me.
Do you have the same thing with yourself?
I've always been primarily aware of my own differences in the sense of being different in some ways, but I didn't take it as something abnormal. If someone points something out to me - like not repeating certain verbal phrases, or not giving so many examples, or not using verbal padding without a communicative reason - I think about it and try to limit it, because then I already know it's autism. It also works the other way around - when someone tells me what I should do instead. For example, look into my eyes. I don't think I'm a bad person, I'm happy to help people, sometimes I'm naive, but I'm certainly not flawless, I have a lot of problems and negatives - whether it's fear of establishing communication, fear of change...
I don't like to go to places where there are a lot of people, loud music and where there is no order, I have a sense of detail, worse time planning, worse orientation, so very often I wander, sometimes I also can't estimate what is more and less important, and because of that various tasks are delayed, I do less work and at a slower pace, but with extreme care, when it would be necessary to do more, but not so detailed. But if it's a thing I'm really passionate about, I can work on it until I'm really happy with the result. But if I sense taunts, or that someone is making fun of me or looking down on me, I can overreact in an explosive way. I'm also very afraid of dogs because I don't know how to communicate with them. Everyone tells me: you can tell when it wants to bite you or when it welcomes you, but I can't establish good non-verbal communication with dogs.
We've bitten off a lot of traits that some autistic people, including you, have. What do you think is the worst thing about autism - what bothers or hinders you the most, and what does it bring to you?
It changes a bit at each stage of life. Anyway, the worst thing for me is probably a certain level of bonding and inhibition in establishing communication especially with peers, fear of approaching and trying to meet people. Sometimes this fear extends to telephone communication. Another problem for me is my behaviour, which is not proportional to my age - sometimes I behave like a small child because of my complete stupidity, sometimes like a pensioner. But I never act normal among my peers - I am a combination of their younger brother and grandfather in one. (Laughs) I'm often hindered by my meticulousness and attention to detail - I hate it when there's the slightest flaw in a thing, I always find it anyway. On the other hand, I appreciate my memory for numbers - be it car license plates, room numbers, descriptive numbers or departure times. I also take it as an advantage that if I am really interested in something, I am able to study everything about the subject in the smallest and most detailed detail and remember it well. And I also find pleasure in what is a boring, mundane, tedious or unnecessary experience - for example, driving around the city at night in a car, riding public transport vehicles, and so on.
I can't leave out the question about your hobbies. As you indicated, they revolve a lot around technical things, which is another thing typical of autistic people...
I've been a car and transport technology enthusiast since I was a kid, which continues to this day - I'm still equally immersed in it, although there is a certain evolution and the intensity of interest in a given hobby changes in different ways over the course of my life. To put it in perspective, I used to collect model cars as a kid, and now I'm trying to write about them and start making some. I also work with the Prague Transport Company. Then I started to turn my attention to other technical things that might have looked outdated, unused or atypical - for example, street lamps, telegraph poles, chimneys and water towers.
I'm very interested in growing several different kinds of plants and fruit trees, birds and aquariums - animals like fish and birds are pretty colourful, but they're not on the same level of communication as, say, a dog. They remind me a bit of myself - they live alone in a cage and I live next to them. I'm always looking for the most interesting and detailed information on a given subject, which I like to pass on. So I'm not just "the weird one" over the buses.
I know that during your school years you also encountered bullying - and unfortunately not only from your classmates, but also from teachers who failed miserably...
I didn't generally seek out the collective and I didn't get along with my peers, I wasn't the competitive or sporty type, I didn't know how to communicate properly with my classmates. It often seemed that I was stupid, for example, because I couldn't understand hints of jokes, jokes, and later sarcastic remarks. Later, Crohn's disease came along, which made the problem worse, because I wasn't diagnosed with autism until I was an adult, so it wasn't known that it was autism. So the gap in difference widened and the line between different/other and bullied became thinner until it gradually disappeared.
The bullying I encountered was mostly "non-contact", that is, with the exception of squeezing a pet bottle while drinking. At first, I tried to deal with it in a friendly way - for example, on my birthday I bought the whole class candy, which my classmates ate, but they dumped the trash in my place and told the teachers, "White brought it, so let them clean it up." Even the teachers treated me better when they didn't know about Crohn's yet. They complained about me, saying that I was strange, uncommunicative, in my own world and in my dreams, that I seemed superior and haughty, that I was not interested in learning, that I seemed like a strange and problematic person. Even they often did not forgive themselves for various remarks - Martin has a paper that he doesn't have to practice, so he doesn't have to practice. This was around the time I was about 11 and I started to physically deteriorate, so I weighed 25 kilos. Instead of teachers explaining the nature of the illness to their classmates and trying to elicit some understanding and sympathetic reactions from the collective, they kept saying: The same standard for everyone, if others have to do something, you have to do it too. Even though I didn't ask for anything. I was reprimanded a lot in front of the class and my parents emphasized my difference in class meetings, which they obviously noticed and almost listed the symptoms of autism, but none of the teachers suspected autism spectrum disorder.
I remember you telling me that even the "normal" style of teaching wasn't right for you as an autistic person. Can you elaborate on that? Because it sounds to me like it's almost like a re-education thing.
I learned a lot of things by rote - it was just a kind of memorization, where I would repeat something because I was told that's how it was done - eye contact, for example. But why it's supposed to be done that way, I don't really understand to this day. I should also mention that I was neither right-handed nor left-handed, but because I was told to hold the pencil in my right hand, I learned it. My handwriting is still strange to this day, though.
Going back to those teachers, they used to push my parents against me. Especially my father, who took me in as a problem student. They tried to turn him against me and stir up conflict. For example, in front of the other pupils the next day after the class meetings, they said, "I guess Daddy didn't like that, did he, Martin?" To this day, when I think about it, it makes me feel sick - my heart is pounding, I feel cold, I grind my teeth. They also guided to strict punishments and a firm hand - just like the psychologist. But it didn't work at all, on the contrary - I started to close in on myself more and it only deepened the problems.
In addition to autism, you also have Crohn's disease, which we've already bitten into. You've probably had autism for longer, but you've known about it for a shorter time, whereas you've been living with Crohn's for longer. Could you compare the two?
Let me start by saying what Crohn's actually is. It's an autoimmune disease where a person's immunity attacks the digestive system - it manifests itself in diarrhea (I haven't had that much of that though), inflammation, abdominal pain, ulcers, or fevers. It also often forms fistulas, which is the connection of organs to each other. Often this ends up narrowing the intestines and therefore restricting their patency. The liver can also deteriorate, which can progress to cancer. Yeah, if it's just the winds that pick up, it's still pretty good. (laughs)
Crohn's manifested itself in me with lack of appetite, abdominal pain, weight loss, until eventually I stopped eating and refused any food. I was ten at the time, and because I was so afraid of doctors and hospitals, I denied these symptoms. I alternated between different types of treatment - from corticosteroids to immunosuppressive drugs (these are the ones people take after a transplant, for example) to biological treatments, to which I had a severe allergic reaction years ago. I have to take the drugs all the time, I can't go off them because then my health starts to deteriorate, I combine them with herbs and that's how I try to keep myself in working order.
Unfortunately, my autism makes the symptoms of Crohn's disease worse because it is affected a lot by stress. I also have a problem when I have to come off some medications because I don't know what will happen next. Crohn's, on the other hand, does not make my autism worse with one exception. That exception is being in the hospital. When I say I have Crohn's, I am taken for a simulacrum, a slacker, and a hypochondriac. Especially in school, I used to hear that I should be on a diet, that everyone has something. However, when I mention Asperger's syndrome, many people are surprised, sympathetic and react in an unexpectedly friendly way. That's why I think it's important not only to raise awareness for Asperger's but also for Crohn's. People often ask me if I'm on a diet. I don't. When I'm well, I can eat anything, but when I'm sick, I can't even get a cracker in. Onions, raw leeks and alcohol can make my condition worse. Cheers and let's not stress!
