This was the main reason for Marijn to join the Dutch Autism Register (NAR). 'The NAR supports people with autism, but also ensures that society gains more insight into autism. It would be nice if you didn't have to explain everything all the time. That can already make a lot of difference.'
Can you give an example of something that is simple for others, but takes a lot of energy for you?
Well, for example, buying new shoes; it has taken me five years to do that. Finding shoes in size 50-51 is already quite a challenge for most people, but for me there are additional barriers. First I have to figure out how to get to the store. By what train, where should I get off, then how do I get to the store? Then I hope there is a shoe I like, that they have my size, that no unexpected things happen. Suppose the train is delayed, or it is crowded, then I immediately get stressed. Then there are so many steps that can go wrong, that sometimes I would rather not do it at all. Everything just comes very hard to me: sound, light, color, details. I can't escape that. Then it piles up until at some point it just becomes too much.
How do you relax again?
When I am at home, I always have music on, I watch a series in the meantime and I also play games. These are stimuli I have control over: I can determine when it stops, that gives me peace. It also helps if things are predictable. For example, I asked my neighbor if he would indicate in advance when he is going to drill, so that I can prepare for it or leave for a while. If it happens unexpectedly, then it comes in suddenly and that's more difficult.
What changed for you when you were diagnosed with autism?
Actually not that much. I was diagnosed when I was 22, but at that time there was no treatment and I also thought I might grow out of it. So I started over-questioning myself: in relationships, when I got married and had a daughter. That's where I got stuck. I couldn't quite meet marital expectations, and when a baby came along, it became even more complicated. The crying and unpredictability werevery intense for me. Everything came at once and I could no longer oversee that. It felt as if the pressure cooker exploded. Fortunately, the contact with my teenage daughter is good now; we recently spent a weekend together in Amsterdam. Looking back, I do think: with the right guidance, things might have turned out differently.
How do you notice that society is not well equipped for autism?
Many things are not so clear or predictable. People often expect you to sense things, but I can't. If someone is irritated, I can't see that. Then it helps if someone just says what they are feeling, instead of me having to guess.
And sometimes I need a little help, for example when I'm at a train station and lose track. Then I often step up to an older person. They usually have a little more time. Then I say: I have autism, could you help me? That often works well, but it would be even better if you didn't always have to explain it yourself and people recognized it more quickly. It would just be nice to have more room in society to be yourself.
What could contribute to an autism-friendly society?
It would help if autism became more visible. For example, there are keycords with a symbol of a sunflower, which you can use to show that you have autism. I heard a story of someone who had been in a car accident and was wearing such a cord. The police recognized that and therefore knew to let her sit quietly for a while. I try to increase that visibility myself, through my involvement with the NAR, by contributing to research through their annual questionnaire, and by participating in this campaign.This way I help the NAR to support people with autism, but also to give society more insight into autism. If people recognize and understand something better, it can already make a lot of difference.
What gives you something to hold on to in everyday life?
It helps to have something to do outside the home. If I'm home alone too much, I lose track of things. Then I'm in my own head and everything gets smaller. That's why it's important that I can go somewhere, that something is expected of me. And that I can be myself there. I now volunteer at an elementary school. During lunch I help to make sure the children don't get into each other's hair. I have also volunteered at the first aid for many years and help out in a home for the elderly. The contact with people - even if only for a moment - really makes a difference and allows me to feel appreciated in society. Life with autism is not just hard. There are also things that go well and those help me keep looking forward.
