Communication – How small things changed after I explained my Autism to my children

„In our home we can be spontaneous – but we give 24 hours notice!“

This is a sentence my 10 year old daughter wrote in her home work about life at home a few months ago. And I do realise that it sounds humorous to most people. But it is actually an essential part of us living together. Before I write something about how I manage my day to day life with my children I want to emphasise that this is simply me retelling what we did – this is not a „how to“ book where I claim any authority over how to tackle those issues „the right way“. The right way is the one that is working for everyone involved.

I have Aspergers – my daughter doesn’t. She is a very open and communicative person who makes friends easily, has a lot of empathy for everyone around her and, most important of all: Can communicate her emotions very well. She lets people know she loves them with ease, she is popular in school and has, overall, grown into a very confident child. She is starting 5th grade this summer – meaning she will go to a new school. And she is excited about all the new things in store for her and looks forward to meeting new friends. So basically she is the exact opposite of her mother – socially. There are other aspect in life where we are very alike but this is not one of them.

When she was little she was a rather shy kid, afraid of her own shadow and very clingy. It felt that in her interactions with the outside world she was very much like me. But as soon as she started going to school that changed rapidly. And I mean: RAPIDLY. As in: over the course of 3(!) days. She went from „I am scared to go to my friend next door alone“ and „I rather play alone“ to „I can go the baker and get bread and I’ll drive by some friends on my way back“ in a heartbeat. And suddenly she didn’t seem that much like me at all anymore.

We had to learn an entirely new way of communicating. In the beginning she saw my problem with sensory overload when being around many people as something akin to me being scared of people. And in her mind the solution was easy: If you are scared of something just do it anyways – then the scary feeling will go away. That my situation was different was something not that easy to explain to a six year old. At least that’s what I thought. Am I maybe just confusing my kid by trying to explain my Autism to her? People keep saying you shouldn’t push grown up themes onto children – but was ma condition something only grown ups ever had to deal with? Thinking back on my own childhood lead me to a strong no on that point. So I took at least part of her advice: I was unsure and perhaps a bit scared of explaining things more in depth to her – but I did it anyway.

I explained as child friendly as I could what Autism was, what the word Aspergers means. What problems I sometimes have with it and how it affects me every day. And I reassured her that I am fine nonetheless because I didn’t want her to worry about me – I just wanted her to understand some things. And what do you know? Things that many adults I talked to didn’t get seemed entirely easy to grasp for a child. No heavy silences and uncomfortable glances. Just a hearty „well, that sucks!“. Yes it does. It sucks a lot sometimes, I agreed with her. She asked if it was hard for me if she brought home friends without telling me. I told her honestly that it was very stressful but that I also want her to have a good time with her friends. So we came up with the day in advance notice. If she want to go somewhere she can tell me a couple of minutes before leaving the house, but if she brings someone home she always tells me the day before.

A while later I had a similar conversation with my son. He got incredibly sad and for a while I didn’t understand why exactly. He concluded that if I have trouble reading people and their emotions I might not always know how much he loves me and it made him so upset he went to his sister and made her write me a letter. Because he understood from one of my conversations with my partner that I prefer text messages to phone calls. That was four years ago and he kept that up. I still find post its or little pieces of paper with „you are the best“ or „I love you“ on my desk now and then. Now that he can write himself he sometimes writes down his feelings about something and gives it to me to read – „just to make sure!“ And it does help! Of course I know he means it when he says he loves me. But pinpointing exactly how passionate he really is about other topics? What things touch him on an emotional level and what is just a random interest – I have a really hard time reading those situations sometimes. His method helps a lot with that.

A few communication issues have come up now and then and there will probably be more to come down the road, one of those things is that I tend to be a very literal person. If I say „I do it in a minute“ I do exactly that, in almost exactly a minute. And I tend to take other people way too literal. Children are usually… well, not like that at all. Same issue comes up with figures of speech. I know a lot of them and can often pinpoint what they mean but sometimes, especially when there is new stuff coming home from school, I am lost. The kids know to explain them to me or to at least signal that they don’t mean things literally. That takes a lot of stress off me (the amount of free mental capacity you can have if you don’t have to consonantly overanalyse every throwaway sentence is amazing…) and at the same time it gets the kids to think about what they say. This has led to them asking a lot of questions about language. „Where does this expression even come from?“ „Why does it mean exactly that even though the words seem unrelated to the meaning?“ „How do sarcasm or irony actually work?“ One question I found particularly interesting was „how does this work in sign language? Do people move their hands slightly different (like changing your tone) and then sign something sarcastically? And do they have figure of speech sings?“ (I have not had the opportunity to ask someone who knows but I am definitely going to.)

So things that might seem like an extra chore from the outside turn out to be not that bad in the end. Of course you can’t take every problem and turn it into a positive, wonderful experience. Some problems remain exactly that: problems. With no interesting or magical fix. And to expect every issue to be turned into some positivity inspirational story is rather detrimental in the long run. But at least some obstacles can be minimised or even turned into stepping stones on the way.

 

Hi, my name is…

Hi, my name is Anna and I am unsure about this.
I’ve been thinking about blogging now and then for a while now. About formats, about style, about how to frame posts and on what details to focus. Mainly because I’ve been following some amazing people online who let me have a glimpse into their lives now and then. A glimpse that sometimes helps me understand them better. Other times it raises more questions than it gives answers. If we are very close I usually ask questions. If we are not that close the usual cycle begins. I try to assess how to ask the things that I don’t understand in a way that will hopefully not offend anyone. That will hopefully get my point across and, if everything goes according to plan get me an answer I can actually understand while not alienating the person I’ve just bothered with my, usually overly complicated message that contained at least five different wordings of the same questions spliced with half a dozen apologies for bothering them.  After sending out my question I am usually busy with imagining about 25 to way more scenarios how the response will sound like. I argue with myself, probably for hours, about how I could have worded that one sentence better. About how I stupid it was not to capitalise a certain word. I have an internal debate about just how bothersome and annoying that mail will be perceived and get my thick skin ready for being called names or being perceived as stupid. I could do something else, play a game, do some housework, watch a show or read a book to spend my time with something that I actually enjoy. Or I could sit in front of my monitor and stare, waiting for a reply that might not even come on the same day.

Hi, my name is Anna and I create my own problems.
I remember that I was almost equally as worked up when I had to phone my insurance a week earlier. It took me about three days of mental preparation (during which I got embarrassingly little else done) to work up the courage to call. My head full of completely mapped out conversations, rehearsed sentences for every little variation in response I could anticipate. If I’d try to write it all down it would have been several pages of imagined dialogue with a person I didn’t know. In my head she already had a personality. A personality who was severely judging me for wasting her time with stuttering through my request, for loosing my train of thought or for not speaking absolutely fluently. A personality that many people in my head whom I rehearse my anticipated conversations with have. They get short with me, they get annoyed and in the end they are most of the teachers I’ve had, most of the people I went to school with and at least three of the doctors I’ve seen when I was younger. They sound like all the people I’ve known who told me straight to my face that they couldn’t decide if I was brilliant or the dumbest person they’ve ever met.

Hi, my name is Anna and I dwell to much on the past.
They are my high school teacher who told me I was one of the smartest student he’d seen in decades but he would let me fail anyways because I „weirded him out“ and he „couldn’t pin me down“. (And yes, I did fail that year. Hard.) They are my first doctor who told my mother that what was wrong with me was nothing that „a little discipline“ couldn’t fix. (She never took me back there.) They are my second doctor who said he’d never seen a child with such a weird list of symptoms and put me on anti-depressants that made me slow and lethargic for years. They are the person in charge of my education who told me I’d be the best person for a certain job, but they would never consider me for it because the marketing people thought I was creepy. That I was either looking at them too much or not looking at them enough. That I noticed too many details but forgot what day it was. They were my third doctor who said „if you were a boy I’d have an idea about what is wrong with you, but you’re a girl, girls don’t have this.“

Hi, my name is Anna and I am uncomfortable.
By now the last time I’ve heard any of those things said to me is about a decade ago. There was a fourth doctor, and though I don’t see her anymore she was life changing. With an ear that listened and after about twenty years of searching: a diagnosis.  Autism. Being impressed at how remarkably adapted I was she said while I was sitting in front of her, battling between crying and laughter.  Crying of relief because the thing finally had a name. Laughing about the absurd notion that I seemed to be well adapted to her. People often talk about their comfort zones. How they sometimes just push themselves to leave them and how much they gain from that. I can’t relate. If there is a figure of speech I’d describe myself with it is „fish out of water“. I have no comfort zone to push myself out of. Or to retreat back in. I am always uncomfortable to a degree. At the best of times it’s a slight humming in the back of my mind. At the worst of times it is a cacophony that makes me unable to move or speak, regardless of my surroundings. I don’t understand what people mean when they do things „intuitively“. When they talk about their „gut feeling“ or how something just „felt right“.  I over analyse everything, most of the time very quickly and almost unnoticeable to my surroundings. Decisions are based on pro and con lists. If someone wants me to be spontaneous and my lists take longer than a few seconds to compile I shut down, have to excuse myself and go home. All these are things I though everyone did and I was just particularly bad at, well, life until I got my diagnosis and I started to get into the topic, started to understand what was going on. Just knowing why was often already helpful in helping me stay calmer, a bit more sure of myself and a bit less afraid of everyone else. But old habits die hard and if your entire world view and understanding of people is based on microscopic observation and detailed analysis of literally everything around you it is still, ten years later, hard to shake off responses that have been so ingrained.

Hi, my name is Anna and I am trying really hard.
I still worry about every little thing I do. Reflect on every sentence I say and rate them on a scale of just how stupid they might have sounded in retrospect. It debate for hours with myself if I should ask that one friend if I could call that day. Even though they have never once said no. I struggle to tell my closest friends what I am thinking about something dear to my heart even though they have never given me reasons to doubt them. But the friends before had. And if that’s all you ever had for observation it sometimes feels like a hard-coded inevitability.  So when that answer to my mail with my question actually comes it sits in my inbox while I take another hour to talk myself into looking into it. When I finally open it there is an enthusiastic response from someone who seems to be very excited to tell me more about the thing I asked. Who goes into detail and seems to genuinely be happy about having gotten a question. I file that one as a success and it lets me let out the breath I feel I have been holding since I hit send. It goes on the good pile of experiences. The pile is small. Steadily growing but still dwarfed by the decades old pile of bad experiences that seems like the Mount Everest next to a mole hill. The Everest is where I come from but the mole hill is where I want to be. One day I want that mole hill to be the first thing on my mind so I can hit send on an email, lean back and relax and think about the good things other people said to me first before I even catch sight of that old mountain. It’s gonna take time, persistence and probably more patience than I have most of the time. But I am moving forward, slowly, to a day where I will be able to say without any worries:
„Hi, my name is Anna and I have Aspergers.“