During my lunchbreak, I’ve been reading the latest issue of Psychology Magazine. The April issue contains a comprehensive ‘Autism File’ and since I cannot stop reading everything related to autism and Asperger Syndrome, I am drawn to the article about Connor, an 11-year-old with an AS diagnosis. I need to quote a part of the article, so the rest of my story will make sense:
“It was her [Connor’s mom] own sister who opened her eyes during their cycling vacation in the Netherlands. Mieke: “Connor was six and he sat on an attachable bike behind my own bike. We didn’t know the exact route and sometimes we got lost….which caused sheer panic in Connor. He wouldn’t stop screaming and refused to help cycling. It was horrible. When we arrived at a camping site and we didn’t know where the toilets were, he would completely freak out: “I wanna go home, you’re a horrible mother!” I now know that he cannot handle unexpected situations, and new things; it takes time and support. But back then, I was devastated. Until my sister asked me: “He isn’t being this difficult on purpose, right?” Her instincts told her to give him clear instructions, and I noticed that worked really well. From then on, we would tell him: “It is another 2 miles, why don’t you look at the roadmap?” It took him no time at all to figure it out, and he would be directing us, and he was happy. We gave him security and clarity. I now realise that we made him ride a bike, but didn’t tell him where to, or for how long – and not knowing, that is something he cannot handle…”
I had a big flashback to the seventies when I read this. I was about 8 years old and I was sitting in the bath tub with my little sister, on a Sunday morning. As a child, I didn’t really like the weekends, they were a bit scary, because I never knew what my parents had planned for us: would we be staying at home, or would they make me go to my grandparents in Amsterdam, some 80 miles away? That insecurity would inevitably cause stomach aches, that I could only endure by swaying back and forth, sitting on the sofa (now I know that was my ‘stimming’). Anyway, while we were getting ready, I questioned mom and dad about what we were going to do: “where are we going?” (to Amsterdam, to visit your grandparents). “How long will it take us to get there?” (approximately 2 hours), “how long will we be staying there?” (we don’t know yet, it depends on how much fun we’re having*), “what clothes am I gonna wear?” (first your old clothes and then, after you’ve been car sick, you’ll change into your Sunday best). “Will I be car sick?” (yes, if you keep winding yourself up about the trip you will be!) It soon became apparent that I had to stop asking so many questions and basically just ‘get with the programme’. But I hardly ever had a good time, because….well…I am an Aspie, and you cannot force me to have a good time! And there was another weekend, spoiled by that troublesome child.
(*Let me explain ‘having fun’…my parents had a completely different definition of ‘fun’. I hardly ever had fun in Amsterdam, with my noisy relatives, and great-aunts with hairy chins that insisted on kissing and cuddling me, the fear that I could never get back to my home if I lost my parents so far away from home… Fun for me was reading a book, sitting in a corner and not being forced to talk to anyone. That hasn’t changed in all those years!)
And now, at 41, I am very moved by Connor’s story. His parents were fortunate to get an early diagnosis. He can design his entire life to fit around his Aspergers, it doesn’t have to hold him back. He has people in his life who will know why he is the way he is… I guess I am just a little bit jealous of Connor….
PS: my sister asked me to tell you that the whole family was always considerate of me; my parents didn’t drag me everywhere, and there were plenty of times that I didn’t have to go to Amsterdam to visit my grandparents, but was allowed to stay in Eindhoven with my maternal grandparents.
PPSS: after a conversation with my mother, I feel obligated to remark that really, I was hardly ever made to go places with our family and I hardly ever went to Amsterdam. That is what my mom tells me. But to me, it felt like it was almost every week! 😉