Telling your story for the newspaper is exciting. Yet they do. Many people have the impression that someone with autism has less empathy. Conversely, it is exactly the same. Most people cannot empathize well with someone with autism. Perhaps this article will provide more knowledge and understanding, hope Lizzy, Julienne and Gerben will too.
Getting stuck and sitting at home
Lizzy (18 years old) begins: “You can’t tell by looking at someone. ‘Oh, you don’t look like that,’ people say to me. That’s right, but I can explain what I’m running into. I got stuck in regular education. There is no structure to it. For example, if I had dropped out of class, I got stressed: what should I do now? If everything is not mapped out, I get stuck. I came to sit at home. It was only after I had been exempt from compulsory education for two years that I was diagnosed with autism when I was fourteen.”
Julienne (20) passed her high school exam, but does not understand why some things in contact are desirable and others undesirable. Why something works sometimes and sometimes not. “I can’t mix with the rest. I think in black or white, right or wrong. When I went to high school, it got really tough. I found it scary and exciting every time; it did not turn. I suffered from panic attacks and collapsed after a year. I sat at home for a year; I volunteered, but stopped because it became too much.”
Gerben (40) was also – overstrained – at home and at the age of 37 was diagnosed with autism through the GGZ. Gerben: “I worked at a commercial company that worked according to American principles and ethics: achieving targets, running production and making a profit.” Afterwards Gerben was able to place the diagnosis. “I knew how to react to abrupt changes. One time it was announced half an hour in advance that we were having a team lunch. Compulsory participation, even though I had already made my own bread? That went down the wrong way.”
overstimulation
According to Lizzy, the fact that autism is diagnosed so late is because there is little attention for children who
not be a burden to the class. “For children who are calm, anxious or sad. Noisy children are given attention. Absence from school is a sign that something is wrong. They could see with me: that girl is often not there. But no one has asked: why, what is going on?” According to Gerben, it also has to do with ‘masking’: pretending to be different than you are, because you want to participate. “I was able to function during the day, at night the lights went out at home.”
It is good to know that people with autism suffer from overstimulation. One person is quickly overstimulated auditory, the other visually. Julienne: “I won’t be going to an amusement park anytime soon, because of the sound and the light. If I am overstimulated, it manifests itself in migraine.”
Learning to deal with autism
At Scauting (with the A for autism) in Tjalleberd, Lizzy, Julienne and Gerben learn to deal with autism. For some this works, for others that. The dog Dunya regularly contributes: taking a walk together, playing a hiding game when someone is restless.
In the classroom, Lizzy’s teacher provides clarity. “Clarity about the times that I am here, how I get here, what I do here in a day, which subjects I study, which chapters have to be ready before a certain date.” Lizzy will take her exam next year, she is considering further training in care and welfare. She still uses taxi transport, but in time she hopes to come by public transport.
Julienne now knows she’s not that annoying kid or poser people took her for. “It is not unwillingness, but impotence. The more people say it’s your fault, the more you’ll believe it.” She wants a ‘normal’ life. “Many people see a life of peace and clarity as unsociable. For me it means that I don’t have to constantly think that things have to get better.”
Gerben is now better able to find the right balance between busyness and tranquility. “I don’t avoid crowds, but I do ask myself: do I have enough energy to handle it? What has helped me is a signaling plan. Green: you feel good. Orange: slightly less good. Red: overstimulated.” Gerben has also learned to solve his stress triggers by going through five simple steps as soon as he recognizes these triggers in himself. Together with his job coach, he is looking for paid work. Back in service. This time with an employer who is open to someone with autism and the talents he has.
Text: Riemie van Dijk
Photos: Scauting Tjalleberd
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