Last week, we wrote about the different forms of discrimination faced by people on the autism spectrum, particularly in education. Despite their challenges and the imperfections of the support from the school system, some manage to reach university level. For our series to mark Autism Acceptance Month, we spoke to some of them to hear their feelings and thoughts. Photo credit: Freepik.
Czech Republic, April 24 (BD) -For this article, names have been changed to protect the identities of the interviewees. We will call them Maya, Lenka and Emma. They are all university students in the Czech Republic. Maya and Lenka were both diagnosed with high-functioning autism, although Lenka chose not to take the final complementary tests that would have made this diagnosis certain and definitive. She is not afraid of it, but simply does not see the point of it. “What would change if it did?”, she asks. “The only time you need an official paper is when you encounter a complete asshole, sorry for that word. Fortunately, there are not too many. I don’t think that a more accurate diagnosis could benefit me in any other way. It probably won’t help me to understand myself better. So why should I bother?”
A brain “wired” in a different way
Maya, on the other hand, considers this diagnosis to be vital to her: “If I couldn’t understand why I am different, I would feel like an alien and it would drive me crazy! Also it lets me know that there are people who are weirdos the same way I am, and I feel less alone.” Emma is diagnosed with ADHD, another neurological condition from the same family as autism: neurodevelopmental conditions. In a previous article we explained that, unlike mental health conditions, neurodevelopmental conditions have no psychological cause connected with the individual’s experience, but are present from the first months of life, or even before birth according to some studies. They affect the way the brain grows, meaning that the brain develops differently than in most people, and results in a different way of reasoning and perceiving the world. Neurodevelopmental conditions are also permanent characteristics, like hair colour or height, and these children become adults with neurodevelopmental conditions. The right kind of care, on the other hand, allows the individual to grow in the best environment to cope. But what is above all important to understand is that a person with a neurodevelopmental condition may be in perfect health, even if they retain their peculiarities and remain different, as their brain is “wired” in a different way.
“It is more a question of what the larger society will do, not us.”
And what are their opinions, or strategies, when it comes to informing people (or not) of their diagnoses? Again, each has a different answer. Emma says that “it is a big dilemma, because when you say that, you are being honest, you prepare people for, maybe, inconveniences that can happen, but on the other side you don’t want people to think about you as just that. You don’t want people to attribute everything to your autism or to your ADHD. I think that with people who are not educated much about it, it can very easily happen. So it is a big question I think. It is more a question of what the larger society will do, not us.” She regrets that people in her situation too often feel like it is somehow their responsibility to do the right things, to take the right decisions, when it should be society getting better informed about it. “I guess what I would do, or I usually do, is that I don’t tell people until it somehow naturally occurs in the conversation,” she adds. “And it usually does, when you talk with someone about your personal experiences or struggles, very often it comes to the surface. I think that ADHD is maybe more normalised (than autism) in society. People don’t really consider it as a disability, but more as a quirk thing.”
“This double burden of having a disability and having to hide it because of prejudice is a very absurd situation”
Maya also chooses who she informs of her difference or not, to avoid certain negative reactions, but generally prefers to say it. “It’s not, anyway, something invisible. People are going to notice that I’m different… and then they’re going to imagine their own explanations, so I prefer that they know the truth. It makes things easier and also sometimes it makes people a little nicer and it saves me from being judged or left out. It also allows me to create a more authentic link with people, I hope. And above all, I think that this double burden of having a disability and having to hide it because of prejudice is a very absurd situation.” Lenka, on the other hand, is more cautious. “I feel like many people around me still have a kind of distorted view of people on the spectrum. They expect you automatically to cause trouble and treat you accordingly. That’s why I choose not to tell this to people. I inform only the ones that know me really well, I trust them and I can be sure that this information can’t damage our relationship. And I also think most people just don’t need to know this about me,” she says.
“Theoretically it is there, but practically I think we still have much work to do”
And what harmful reactions or uncomfortable situations do they face? “My personal experience is that, when you are studying Social Sciences, we are formally talking about all of these things: ableism, sexism, and stuff like that, about tolerance. But I guess it is not really embodied in the politics of the institutions, of the universities,” she notes. “We are talking about tolerance, but there is still a very rigid standard for people in academia and what is expected from them. I can write about tolerance or neurodiversity, but I sometimes feel that I am not approached as a neurodiverse person (a person with a neurodevelopmental condition). Theoretically it is there, but practically I think we still have much work to do,” she adds.
However, in the past, she faced much more difficult situations. “I think there was one thing that bothered me very much, that in elementary school my teachers were angry at me and telling my parents that I was too boyish and that it is a problem that I behave like a boy, that I was crazy! And I had this problem, I was a very good student, I had very good grades, I always found something that I liked in the education that I received, but I had behavioral problems and there wasn’t much understanding about this. So, that’s maybe a discrimination I faced.” Indeed, people with ADHD are often dreamy or restless children who have great difficulty staying focused on a task. When teachers are not sufficiently informed, this can unfortunately be understood as ill will or the result of bad education.
“I heard a lot of stupid and mean things from professionals who should have been the ones there to support and help me”
“I think that maybe that’s the thing in our culture: that any kid who is different in some way is considered badly behaved. It is considered a thing of discipline, not a thing of tolerance and different approaches. So I think that this should change, because it also creates shame in parents. People are ashamed that the school, those surrounding their children, think that their child misbehaves and that they are not good parents. So it’s hard for the parents and for the kids too. As far as I know, there is a tendency to punish, not to understand.” Maya also encountered similar difficulties at school. “My school teacher, when I was 6 years old, called me the snail, because she thought I was too slow, and told my parents that I should seriously grow up faster… Later, I also heard that it was my fault if I was being bullied by my classmates, that I had to be less weird. I heard a lot of stupid and mean things from professionals who should have been the ones there to support and help me.”
“And, that’s not discrimination, just misunderstanding, but I now always need to persuade people that I really have ADHD,” continues Emma. “The fact that I am functioning, the fact that I am in doctoral studies, doesn’t mean that I cannot have a neurodevelopmental condition. So these are maybe the things I am fighting. And also the fact that people here in the Czech Republic are not educated much about these things. They have many stereotypes in mind, and that’s really hard when you have this conversation with people you meet, to somehow inform them what you are feeling and what your needs are, even if people do not mean it badly.”
“When someone wants to be friends with me, they need to tolerate that I am a little different.”
And, finally, what are the ways to act appropriately and help with the inclusion of neurodiverse people? “I think it is good to be explicit with neurodiverse people, not to play on social convention. For example, when I am too loud or too talkative, you just can say that! You don’t need to go around and try to somehow tell me nonverbally. I think it is the basic thing, and also I think, even for the people who are not neurodiverse… it would be a release for everyone if we were direct, honest and spoke about things that are uncomfortable for us or that we like,” explains Emma.
“Some teachers believe that no student should be treated in a special way,” says Lenka. “I think all of us should. Not only autistic people struggle at school and in life. Life is hard and it has no meaning. The only thing we can do is to try to be kind to others.” And the best thing that her classmates can do “is to be more tolerant, benevolent and more patient with me,” adds Lenka. “When someone wants to be friends with me, they need to tolerate that I am a little different. Most people would say weird. It takes some time to get used to me. But luckily there are some people that are willing to go through this process and I am so grateful to have them in my life.”
