My Not So Little World

Last month during rehearsal while our conductor was trying to get someone’s attention he uttered the words, “He’s off in his own little world.” While in that specific situation it had nothing necessarily to do with autism, 44 years of hating that saying welled up inside me.

I am the well behaved one at band usually. If I “misbehave” in musician terms it is nearly always due to sensory issues and because the conductor knows that while he sometimes forgets, I just have to remind him that I am not prone to being disruptive or wandering away from my drum set so he can assume there was a reason. Because I tend to sit quietly at my drums behaving myself for the most part when I spoke up it stirred a longer debate than is really good given we had music to rehearse.

I asked, “What makes you so sure his world is little. It could be huge. Bigger than yours.” The band I play with is part of a non-profit society. I am a founding member. It’s stated intent was to use music in partnership with those with a mental illness and those without for re-socialization, rehabilitation and destigmatization. I was dragged into it, slightly against my will by our first pianist as they had a drummer and all I had was a keyboard that was barely better than a toy but 24 years later I still play.  I replaced the drummer they had in the early years after a bit and there I have sat since. (http://www.friendsofmusic.ca/ for more infomation)

Our group is considered a performance group in the way that we speak of our groups. That is the members of the group as a whole can put on a performance in a public venue and people will enjoy it. As the society has grown we have added other ensembles some with a teaching emphasis or a purely recreational one that do not generally perform or have the expectation of it so our rehearsals in our group are by necessity supposed to be a bit more structured.

I take my long time membership, and my board membership pretty seriously so I normally try to be a good example. In 24 years I have forgotten my music twice, I always have a pencil, I always phone in sick and so on. So my speaking up was not typical. I suppose I spoke up because it was a safe venue to challenge the little world notions. Even though I didn’t directly tackle it with regards to autism but a venue where I felt safe enough and confident enough to challenge the pairing of little and world.

There were murmurs of assent, and murmurs of what the heck happened to the drummer and eventually we played on and my conductor didn’t even give me too much of a scolding. (The bonus of 24 years of being very well behaved I guess)

I don’t recall the first time I heard and made sense of those words. There was a time perhaps to outside standards it seemed like it was a little world I had and was frequently in. I sometimes, at times like this, when all seems bleak and fairly hopeless wish I was small enough to cope the ways I coped then. That is small enough to hop in a Big Wheels (the most awesome vehicle ever invented it had was red and yellow and you propelled it with your arms and steered with your feet – although the details may be lost in the mists of time) No problem I ever had in my first 4 years of life was so big that 8000 or so circuits around the basement in my Big Wheels couldn’t solve it.

It’s true enough when I was in that mode I wasn’t having any big thoughts. My activity was driven by a frenzied desire to escape whatever had put me there in the first place and not to think but that was only a fraction of how I spent my time in the years when I was viewed to have a little world.

I was covertly reading and soaking up information. Covertly because I had gotten the impression it was illegal to read until you went to school. I was having to process the abrupt to me shift from my homeland of Denmark to Canada a country I regarded as quite strange at first. I’ve since concluded at not quite 3 I couldn’t separate out the strangeness that was Canada and the strangeness that was the early 70s so Canada may have taken on more blame than is fair.

The internet name I use to this day was born in those years when I could be pronounced asocial, lacking in play skills and probably retarded.(I know it’s the day to end the word but in this context I use it in the medical sense it was used about me not in any other way)  It’s a combination of gargoyle and teeth and I viewed it as my alien name. Very early on in my life a narrative to make sense of being in a world that I did not belong in was needed. It turns out autistic as alien is so common as to almost be diagnostic but I had no way of knowing it. As I grew older and older more of my days were spent in a weird triple mode as in the story I told to survive the world I had to live in I was an alien who had to observe, but beyond that I was an alien in a boy’s body. There was much about my fictional non-alien self that was nothing like my own life and I suppose that too was a coping mechanism.

So I lived a reality several times removed from my own for close to 20 years. Not bad for someone without an imagination (That too is a separate topic in it’s own right) My alien name is a combination of gargoyle and teeth as the three year old me for some reason thought aliens would be very toothy and no doubt somewhat hideous (not concerns for me as I after all had my disguise on).

That the world I lived in mentally was my own I can’t quibble with. I had not much choice in the matter. I think to not create a world where I could make sense of the world I dwelled in physically would have been to go entirely insane or perhaps never to surpass the initial impressions of me. I don’t know. Children are survivors. Autistic children shouldn’t be viewed as an exception to that so the places they go when you feel as parents and family members and friends that they are unreachable, shouldn’t be regarded in diminishing ways but appreciated for a role they might play in making any joining in at all possible.

I liked to be under things a lot when I was a kid. Actually I still do but age and two joint replacements make it less practical. Stress me enough though and I will find a way and a place. I spent a lot of hours under tables listening, or lying under trees watching the dance of sun and shade and thinking the thoughts I had to think. So what if the wiggling of your fingers in just the right way can make that even more beautiful? Is it the autistic world that is small for noticing that or the neurotypical one for not knowing how to enjoy that and get some peace from it? Try it sometime. I dare you. Light a candle or two and crawl under a table and see how you feel. Notice the shadows and play with them. Did your world shrink or expand? Do things feel more manageable after a bit? What would happen to your own world if you dared to notice that the sunlight can catch a dust more in just such a way as to create beauty never captured on canvas?

It could be I am an optimist and some neurologically typical people can’t even see some of this. That would make sense given the who;e sensory hyper and hypo-sensitivity aspect so maybe you won’t see what I see or what if you are doing his because you love a child with autism what they see but I still think you will feel and see something different.

So much of what people think they know about autism is tainted by observer bias. The autistic person behaves in ways that make them look different from the observer. The observer seeks a reason. That the reason may not be true doesn’t seem to enter into it. The observers after all tend to be highly educated, very important types and what they are observing is some specimen of child viewed as likely to cost taxpayers millions upon millions but being a civilized society compassion is due I suppose they reason.

Only the theories they come up with are not compassionate. They are almost all completely, and entirely wrong. The treatments then that come out of those false conclusions are also wrong. They dehumanize those who undergo them. Rob them of their innate abilities to cope and mass produce organic robots. That is autistic people who have learned to suppress everything about them at huge cost and so have no energy to be anything at all but compliant. We all know what the cost of non-compliance is in some areas so let’s not even go there for now.

Autism is still viewed as so horrific that the number one priority of the biggest fund raising group there is for autism (and I am going to treat them like Voldemort and not say their name as they certainly do a more than ample job of self-promotion) is a prenatal test for it. Reading their mission statement I did so wish my world really was so small I never heard of them.

My background is in psychology. I took a lot of behavioural psychology in fact. I think all my university offered as it has it’s uses. However the blind application of it without regard to the utility of the behaviours in front of you isn’t something we were taught as reasonable or ethical. When the internet was first becoming more widely available ,over and over again, I protested what strict ABA would do. That the complete disregard for any functional utility of the behaviour that autistic people did have was a mistake. Over time a few people started to see this but not enough of them. Therapy programs still focus very much on making the person indistinguishable from their peers. In fact we have come full circle to the diagnostic practices of my own childhood where it’s mused that some people are in fact cured. (That they won’t be when they hit another developmental stage where demand once again outstrips capacity is not something I doubt but again a topic in it’s own right).

Think about that as a goal for a moment: to be indistinguishable from your peers. When you go out into that real, big world people are so fond of is that your goal? To not stick out? Surely at work you want to be distinguishable, surely you want someone to remark about you in some favourable way. You are the best at catching bots, or you bake the best challah in all of Canada and so on. So called normal people don’t really have this as a goal at all. In fact from books I get the sense they fear it. So why is this a therapeutic goal? Shouldn’t the goal be to embrace the person you are and make the most of it while at the same time since I am not a total idealist and blind to the pragmatics of coping, learning effective coping skills. Shouldn’t those coping skills be based on what you already have? That rock you carry in your pocket, the solar calculator that catches the light etc… Why is it up to autistic people to cope in the same ways that neurotypical people do when from where I sit many “normal” people don’t cope very functionally at all. How is reflecting light off your watch worse than drinking too excess? Why is reciting train-tables when you get stressed worse than using the kinds of drugs society tolerates to some degree? Does anyone out there have a good answer to those questions because if these were test questions so that the autistic person will fit in better would be a failing answer. It’s based on a false premise that that equals being happy. Happy after all should be a goal, no?

Until I was in my mid 20s I desperately wanted to be normal. That I even thought that it was within my reach is laughable in retrospect. If I had been neurotypical if we assume my intelligence isn’t completely tied in with my autism I would have still been a total outlier but in any case I wanted it and I tried oh so desperately hard. I had it all tied in with love somehow in my mind. That I could be lovable if I was normal and I want to cry sometimes for the child and young person I was then.

Data, of Star Trek’s The Next Generation, was my role model. I thought I could outgrow my programming and be more human. I feared what it would cost me too at times. I would argue with him out loud sometimes watching it especially an episode where he is about to install an emotion chip. (I knew it would be too much all at once for him) My brother got annoyed and made some remark about how to feel is to be human and since my own range of feelings or at least my understanding of them was still pretty narrow I was hurt but returned to convincing Data of the error of his ways.

It was through reaching out to parents on Internet Relay Chat that I started to see the value in my autism. That I had a role, while not one I would have signed up for necessarily if you got a choice, but a role all the same in trying to educate the educable parents. I watched some parents try every treatment possible but didn’t judge them for it overly harshly as that they were driven by love was clear enough.

I ran a chat for kids and their sibling for a time and some of those kids I sometimes hear from even now. Some parents would get grumpy with me because I always was keen to know their child’s interests. We had a difference in opinion as I viewed the interest as bridge to communication and the parents tended to view them as obsessions and perseverations and thus not to be encouraged. I would reply well if I get three kids in their perseverating on the same topic a conversation sometimes happens and so it was. To this day I know more about Pokemon than anyone my age should but that it helped some kids a lot was clear. A mother messaged me once to say her daughter had said she had a friend. I thought that was nice but didn’t grasp why the mother came on to say it and she then said she had never said that before. Never had one before.

My brother was not a fan of these kinds of friendships at first. The whole internet thing going a bit too much with being a hermit in my own world plus there was the whole axe killers things to worry about. Thankfully one of the parents I chatted with lived close to him and it was through observing that my online friendships could and did develop into real world friendships and supports that his fears eased.

Oddly enough to the extent I work at all these days I work in a virtual setting. Out of that same chat platform. My colleagues are no less real for my not having to smell them or hear the sounds of their music escape from their headphones. When my mother died they were still a comfort. People to seek out despite never having been in the same physical space with them.

Does that make my world smaller? It seems to make it bigger to me. I use multiple languages in my work and know people from so many more than I would if it was easy for me to go out into the local city and hang out and do what people do when they go out there. (I have no clue actually what they do)

In my hours of profoundest grief and shock it was the mother of my long time boss who provided some of the nicest words of comfort.

My world is not small. If the expert view of my world is small or was small that’s a problem with that view. Their view is small. I won’t go so far as to say as a result their world is but their world is clearly not as open to things outside the realm of things they think they know about being possible. In my “small” world I know I barely know anything. The rules of this “small” world require me to check when it intercepts with the “real” world. As a result oddly enough even people who legitimately belong to groups regarded as having normal sized worlds sometimes have had to comment how much better I understand some things. Some of those things are the very things the experts say we as a group are deficient in when they speak of our lacking some fundamental human attributes and what a problem our empathy is. Irony there entirely intended but sad nevertheless.

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6 thoughts on “My Not So Little World

  1. Thank you for this blog.

    I am learning more about you (that’s Y O U) than I would have ever guessed about you in high school. You speak so clearly and so eloquently about autism and how it came to be in your life. There is so much truth in your observations- I concur with your observations that ring true to me as one who didn’t fit in very well either- but I just want to listen to what you say to learn more. You are a gift to greater understanding. We are blessed to know you, Kis / Gareeth.

    Again, thank you.

  2. As I read this I thought about how limiting any assumption is. How we so often make an assumption without further thought and a wall is immediately constructed. A wall that allows us to move along, but that limits our understanding. It’s easy to construct walls, much harder to break them down. (At least this has been my experience.) It turns out I spent a nice chunk of my life busy constructing walls, now I am in the phase of my life where I am eagerly disassembling them and, oh what a beautiful thing it is!

  3. I love this…
    I was working with a group of teachers last week and there was a discussion about accommodations for children who experience the world differently and the resistance to this that sometimes exists. It was summed up, to some degree, in the comment that “we have to get them ready for the ‘real’ world.” My response was – “this IS the real world… and these children are bringing their best authentic selves with them each day.”

    Seriously… I wish I could have shared this article with them.

    • I am glad you are tearing them down Ariane and so publically as that helps others question the assumptions they made as not everyone is willing to hear it from people like us.

  4. There is so much power in language, in articulating perspective on your own being and living. The detail of the personal, the grains of what comes to form us, echo across a vastness as we tell of them well. You make very good use of language gareeth. What you reveal is useful.

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