Jessica Kingsley Publishers

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A Self-Determined Future with Asperger Syndrome

Solution Focused Approaches

E. Veronica Bliss and Genevieve Edmonds
Foreword by Bill O'Connell, Director of Training, Focus on Solutions

Paperback: £13.99 / $22.95

2007, 234mm x 156mm / 9.25in x 6in, 160pp
ISBN: 978-1-84310-513-8, BIC 2: JM

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Introduction

What's this book all about, then?

Consider the following: I hate supermarket shopping. Supermarkets provide a mind-ripping distraction for absolutely all of one's senses.

First, supermarkets have obscenely bright lighting which often flickers and which always causes the bright colours of packaging and advertising to jump and dance before my eyes. The jagged colours then reflect up again from the shiny floors for a second visual assault. I have to squint in an attempt to decrease the amount of light and colour coming into my eyes.

Second, the noise level is positively incapacitating. There are people sounds: the rumble, rumble, blurb, blurb sounds of everyday conversations punctuated by piercing screaming and other high-pitched noises of children, followed by the piercing screaming and lower-pitched but louder noises of their parents. On top of the people sounds, there is a layer of beeping checkout sounds, a layer of swishing and rattling packets topped off with a layer of various clicks, squeaks and buzzes. All of these mainly chaotic and unpredictable sounds are wrapped in jangling music punctuated with sudden, brain-jarring tannoy announcements. I want to cover my ears, but I settle for involuntary jerks of my head in an attempt to clear a path for coherent thought.

Third, there are smells that mix and mingle throughout the building: coffee, baking bread, raw meat, fish, body odours, toilets, photo chemicals, shampoo, perfumed soaps, air fresheners and candle smells. Often these smells merge into tastes in my mouth, which makes me want to scrape my tongue on my teeth for a distraction. Some of the nicer smells take my attention away from what I am trying to do, and if I am not careful, I wander towards the smell and disorient myself.

Fourth, there is a very high degree of demented activity within a supermarket. There are constantly moving people, and the smaller the person, the faster and more unpredictably they move. There are children running, arms reaching, trolleys rolling, paper flapping, things falling, people bumping and items being shifted from shelf to trolley to conveyor belt to bags and back into the trolley again. Honestly, I could weep. It is like uncontrolled dodge 'ems in my mind. I over- or underestimate my distance from people, trolleys, shelves or displays, with the end result of bouncing and banging recklessly down each aisle, like Tigger on amphetamines, flinging assorted apologies and 'oopses' as I go. Happily, the trail of destruction behind me is always worse in my imagination than it is in reality - so far.

Amongst all this, while squinting, jerking my head, scraping my tongue on my teeth and bouncing from one thing to another, I am meant to focus on the reason I came to the supermarket. Somehow, my written list is supposed to grab and hold my attention amid this assault on my senses. I am supposed to be able to switch squinting eyes from my written list to the items on shelves while avoiding any 'odd' behaviour that might, though calming to me, upset, offend or downright frighten other shoppers.

Just picture it! There I am, clutching my list in an ever dampening fist, narrowing my eyes, jerking, twitching, stopping and starting erratically, saying 'cereal', 'sorry', 'sorry', 'oops' to myself between tongue scraping and jerking commando-like among the ebb and flow of people, trolleys and products in the aisles. I take quick glances up every few seconds to orient myself, looking for clues, and I allow myself a little puff of pride and shameless relief as I find the cereal aisle. Ha! Bust my buttons and blow me down - I have arrived without incident. After a little mental 'high five-ing' I have to do some new mental gymnastics in order to make a choice between twenty-five different brands of cereal, at least ten of which are in blue-coloured boxes like the one I am looking for. After making a choice and taking a deep, cleansing breath, I Tigger-bounce off to do the same thing again in the bread aisle.

All this I have learned to do, and then (cue scary organ music) someone recognizes me. Not only do they recognize me, they want, for reasons I simply cannot understand, to talk to me. They apparently want conversation in the middle of chaos! Why? Why, for heaven's sake, why, in the middle of this war on my senses, in the middle of this magnificent effort of concentration would anyone want to talk?! Unless, of course, they need to tell me my hair is on fire or something and then OK…I'll allow for that. But most conversations in supermarkets are, it seems to me, a pointless distraction which is pretty high up the list of 'Things I don't need' when I am already battered by thousands of distractions.

'Hello Vicky! I didn't expect to see you in this neck of the woods.' I jerk to a stop. I am caught. Caught like a rabbit in headlights and I cannot form a word. I can only stare and do a few frantic teeth-on-tongue scrapes.

'Are you going to the meeting?' Meeting? I think the word in synch with my rapid blinking trying to access a useful reference point in my head. My squinting eyes go back and forth, I jerk my head to empty it of sounds, I steady myself on the nearest shelf, then I zero in again on the woman who has interrupted me. Finally I say the word out loud: 'Meeting?' I suddenly wonder (rather oddly under the circumstances) if I am blinking a lot more than is considered normal, and I guess that I am.

'Yes' this big jolly woman says. 'The meeting on the twenty-first.' Again I mentally repeat the phrase but it connects with nothing, as my mind is ripped away by some happy family noises in dairy products that have suddenly grabbed my attention. I say again 'Meeting…?' Squint, jerk, scrape.

'This month!' she exclaims. She seems bizarrely keen about this meeting.

'The meeting on the twenty-first of this month?' I parrot after her. I wonder silently what month of the year it is, and notice that there are no clues of this between cereals and dairy products. I hear a little mental 'snap' and my mind becomes angry. I can almost see my patience dripping into a puddle on the floor. For heaven's sake! Is it necessary to play twenty questions with me? What does this woman want to know? And furthermore, now that I think about it, who is she? Where have I seen her before? Fortunately the safety switch my mum and I installed years ago is still working and my brain and my mouth are disconnected. I am unable to say the things my mind is thinking, so I continue staring at her. Squint, blink, jerk, twitch.

'You said you would come! You said you would be there!' she says, showing no obvious sign of being irritated with my lack of response or my physical quirks. Sadly, there is also no sign of her noticing the tortuous twisting, turning and fatigue of my poor, tired brain cells, though I continue the squinting, jerking and funny mouth movements and I know I am starting to sweat.

'November! It's November' I say, suddenly brightening because my mind has solved one of the many tests being set. 'There is a meeting on the twenty-first of November…in Manchester…yes. Yes, I will be going. Will you?' I ask not because I am even a teeny tiny bit interested in the answer, but because I know asking a question will get me off the hook and buy me some time to calm my over-excited innards. Thankfully, she answers with a paragraph of words, none of which I can process but all of which give me time to try to smooth the spikes out of my brain and construct an escape. The pressure is off me. I repeat a few things she says, I smile, I nod (this is what normal people do) and then my foot shoots out in a tentative effort to make a break for it. I think I finish with a sentence that she possibly finds peculiar because she gives me a look as if she is worried I may be having a stroke. I suddenly wonder why I am not. All of this two-minute exchange takes a heroic effort from my brain, and a stroke about now would make perfect sense. I shuffle off and wander through the brightly coloured aisles, wondering what I am doing in this hell. And I never do buy the bread.

Err…so what's this book about, then?

This book is about noticing how people with minds like mine (though my 'autism' is as yet undiagnosed) manage to negotiate supermarkets, along with other seemingly impossible aspects of everyday living. If you are reading this because you want to support someone who has an Autistic Spectrum Disorder (ASD) or, more specifically to this book, Asperger Syndrome (AS), then this book is about noticing, naming and using the strategies people with AS already employ to get through their days. It is about developing a respectful working partnership with someone whose mind may work in unexpected ways, sometimes different and sometimes similar to yours. It is about working hard to listen to what a person with AS says, and believing that, for them, what they say is true, makes sense, and is the best way they have of cooperating with you at that moment in time, even if you don't understand or agree with it. It is about using language with a common meaning to construct a future which is important to the person with AS, and it is about using that common language to decide how both of you will know when you are doing the right things to move in the direction of the person's preferred future. This book is about you learning to function within an occasionally foreign culture which you need to respect and leave intact, unless you are specifically requested to do otherwise.

If you are reading this book as a person with AS, this book is about doing the above things with people who do not have AS. They need your respect, help and understanding too.

This book is not about supermarkets, which is probably lucky for all of us. It is also not about assuming that people with AS mean the same things as non-autistic people do when they use a word or phrase, or when they set a goal for themselves. It is not about assuming that you, as a carer or something similar, know what is best for them, or that you know what they need to do in order to feel better. This book is not about assuming there is something 'wrong' with people who have AS (even those who seem rarely happy or impossibly anxious), that needs to be 'dug out' and 'fixed'. It is not about assuming that the professional or the non-autistic way is best, or that people with AS need to be 'normalized' in order to fit in to their communities. This book is not even about assuming that people with AS need help from other people, or that they wish to change how they are or what they do. If something isn't broken, this book is about how not to fix it.

Again, if you have AS and are reading this book, replace the term 'AS' with 'neurotypical' (NT) and the book will retain its meaning all the same.

The reason supermarkets were even mentioned in the first place is because they represent a big collection of things many people with AS find difficult about ordinary life. Brightness, noises, smells, distractions, movements and feelings that are integral parts of getting through the day can cause a person with AS to become exhausted with the effort of holding it together and getting their needs met. A shopping experience described from an AS point of view, such as the one at the beginning of this chapter, illustrates how different a common experience can be from that of someone who does not have AS. One description is not wrong, it is only different. The person without AS does not have to set out to 'change' the person with AS in order to make shopping a delightful experience for them. In the main, the person without AS can help most by not assuming that everyone does or should experience shopping in the same way as they do, and by being flexible with their thinking in order to understand the possible differences in perceptions.

Another way the person without AS can help is by noticing the heroic efforts being made by the person with AS in order to survive the world and get things done. The easiest way to do this is by asking the person with AS how they manage an assault on their senses, such as the supermarket, and still come out with groceries. By asking how they continue to make themselves return to do even more shopping on a regular basis. By asking them to tell you how they experience shopping, then believing what they say. This book is about helping people without AS to do these very things.