Something I hope will be helpful for teachers (and parents) of autistic kids

A GUIDE FOR TEACHERS OF AUTISTIC STUDENTS

I wrote this guide a while back, for an autistic group, it's recently occurred to me that many others might find it helpful. Feel free to print it out and/or share it online (with acknowledgements and/or a link to here please!) wherever you think it might be useful.

1) Don’t expect us to be Neurotypical, or ‘normal’. Autism is fixed at the genetic and neurological level, we can no more change it than we can fly. Pressure to be ‘normal’, even if superficially successful, only causes us stress.

2) Presume intelligence. Difficulties with social interaction, verbalisation, auditory processing, information processing and sensory overloads can sometimes lead others to think we are ‘stupid’. We aren’t.

3) Consider our sensory needs. Most of us have very acute senses, meaning things like fluorescent lights, glare, strong smells, and noisy classrooms can cause us huge stress, hindering learning and possibly even leading to meltdowns. Even small accommodations, such as allowing us to wear caps and sunglasses inside, can help.

4) Don’t force eye contact. In autistics, lack of eye contact is not a sign of dishonesty. Many of us simply find eye contact painful, invasive or simply irrelevant. Also some find it difficult to look at someone and listen to them at the same time.

5) Accept that our body language and emotions are different. Many of our emotions don’t seem to ‘reach the surface’ very well, and when they do, are not likely to be the ones considered appropriate or correct, or correctly expressed. This doesn’t mean we don’t have any feelings, simply that we have different ones.

6) Accept that we don’t mean to be rude. We lack any instinctive understanding of social rules, and so inadvertently trespass them. If we are disruptive, it’s best to quietly take us aside, and tell us the rules explicitly. It’s also good to tell us when we do something right, so we can add it to our social ‘repertoire’.

7) Keep change and disruption to schedules to a minimum. We don’t cope well with sudden changes and lots of disruptions. Give us as much advance notice as possible of changes, including transitions from one lesson activity to another.

8) Isolate our meltdowns. Meltdowns are NOT tantrums, but a sign that we are stressed to the point of overload. It’s best to get us as fast as possible to a quiet, isolated, dimly-lit space – and leave us there till we calm down. DO NOT TALK to us during or just after the meltdown, it will just make things worse.

9) Avoid slang, or explain it. We are very literal thinkers, and if we don’t know expressions, can be confused by them. If you tell us to ‘hop to it’, we probably will! This is sometimes assumed to be ‘cheeky’ behaviour. It isn’t.

10) Focus on our strengths, not our weaknesses. We may be lacking in social skills, but are often very good at other things (and no, it’s not always computers!). Our ‘special interests’ can often be used to aid and focus learning. Moreover, a positive attitude on the behalf of the teacher can reduce the chances of us being bullied.

by Penni Winter

Disability, Spoons and Cats

Recently I realised that my elderly cat has gone completely blind. She’s probably been getting that way for some time, but for ages I mistook it for other things. When she meowed to be let in, then hesitated in the doorway, I would get impatient, thinking it was the usual cat-thing of “Oh! The door is open! Hmmm, do I want to go in or not…” Being a typical cat, in other words. But then I noticed she was blundering into furniture, and one day she fell off the deck. I’ve never seen such an expression of feline terror in my life. (She wasn’t hurt, just scared.)

Since, then, I’ve been watching her negotiating her environment, learning to feel her way to where she wants to go. It’s as if she’s saying to herself “okay, couch, couch, chair, couch, my food should be straight ahead, oops wall, okay fridge, the food should be here somewhere…” Her bowls are just a couple of feet further, but she will still deviate off course, blunder into the cupboards or stove or even the laundry, walking right past the food, and turn around a few times before finding it. Finding her way out is equally roundabout and laborious. (Yes, I do sometimes take pity on her, and take or guide her to her food, but it’s not always obvious what she wants, and I think she has to learn her own ways to where she wants to go, as I cannot be with her every minute.)

But in watching her, it’s struck me all over again just how labour-intensive it is, having a disability. Sometimes, she just gives up, and settles down for a nap, wherever she happens to be, in a corner or doorway or right in the middle of the floor. I know how that feels, when your spoons are all used up for now, and you just need to quit trying, and rest. She sleeps a lot, and so do I.

All of which reminds me of how exhausting life was when I broke my ankle and then my hand, and was in a wheelchair for several weeks. Even the smallest thing, like getting up from the couch, or fetching something from another room, took a lot of time and energy. I am fortunate, yes, as I can walk again now, but the ankle will probably never be what it was, and still gives me problems. Add in arthritis in my knees, Chronic Fatigue Syndrome and being autistic, and the simplest things can still consume a lot of my spoons. 

Take something like a simple walk round to my local shops – something most do without thinking twice about it. For me, it starts with estimating whether or not I have the energy to walk, and how sore is my ankle already, or should I drive. I’m photo-sensitive, so I have to make sure I have my cap and sunglasses. I literally watch every step I take, as any misstep will cause (added) pain. As there’s no footpath on my side of the street I have to be extra careful of some patches of rough, uneven ground. And I sometimes think – if it’s this difficult for me, how much more so is it for those permanently in a wheelchair? When I was in one, I found the most trivial things were an obstacle or a trial – kerbs that didn’t look that high, or those pretty-looking cobblestones in our town’s main street, which actually rattle the bones something dreadful.

And when I do get to, say, the supermarket, there are more challenges. Maybe it’s more crowded than I thought it would be, or I have to hold my breath walking past the seafood counter, as it’s particularly pungent today. Or I need something from up high – the strength and balance of my ankle is not what it used to be, and I have a very real fear of falling. Or they don’t have an item I need – inducing oh-God-what-do-I-do anxiety, even panic or near-meltdown. I have to negotiate all of these, all the while my ankle is hurting, my knees not wanting to take the pressure of pushing a trolley or carrying a basket, and I’m starting to wonder if I’ll have the energy to walk/drag myself home.

My life is full of daily negotiations like these. When I walk down my front steps, the ankle, knees and still-tight calf muscles and tendons mean I need to hang onto the railing. (Steps without railings now make me shudder.) Going up them is not much better. Arthritis doesn’t only cause pain, it makes the joints weaker, and so I must use extra energy to push myself up each step. My days of bounding up flights of stairs are gone. Even getting in and especially out of my car can be tricky, I have to manoeuvre so that both feet swivel through the door at the same time, pulling my bag or bags with me, all the while trying to prevent my elbow from accidentally beeping the horn! Getting in and out of bed is also a matter of calculating movements. Going anywhere is a matter of looking at what it will take, what I might face there, and so on.

Other disabled can no doubt supply their own lists of such daily negotiations, the things that consume their spoons. I have of course always been autistic, and sadly when I was younger I didn’t know why I struggled with so many things others found easy. I thought I was somehow inferior, a lesser breed of human being. 

There are many non-disabled who still think this of anyone with a disability, they think that it’s a fate worse than death. Literally. When I was younger, I leapt up steps and blithely walked for miles. When my cat was younger, she would saunter in and go straight to her food or the couch. When you’re not disabled, you don’t give such things a second thought. And so people don’t really see how often we have to, how we not only start out with fewer spoons, but use more of them in everything we do.

But having to do this, to make these constant little, or not-so-little, calculations and negotiations, doesn’t mean we’re lesser beings, or to be pitied, or scorned, or shunted aside and ignored. We’re not ‘better off dead’. We’re human beings, even with our extra trials and tribulations. We need accommodations and support, yes, but most of all we need understanding and patience from others. I have this to say to them - if we say we can’t do something, take our word for it. If we say we need to leave, don’t scoff at us. If we struggle with something, don’t say ‘It’s not that hard’. Accept our truth – because who knows, you might live it someday too, or someone close to you might.

On Being Challenged, Not Disabled

As most of you will know, I have not only Asperger's Syndrome, but also Chronic Fatigue Syndrome. I also, incidentally, have arthritic knees and a temporary disability in the form of a still-mending broken ankle. So in most people’s eyes, I would certainly slot into the ‘disabled’ category. Yet  I’ve always felt uncomfortable describing myself as disabled, most especially in regards to my Asperger’s Syndrome, but even when considering my other, physical, impairments.

 I’ve been thinking about all this for a long time, and I’ve finally realised why I feel that discomfort. The Concise Oxford Dictionary definition of ‘disability’ is ‘thing or lack that prevents one from doing something… physical incapacity caused by injury or disease’. But I don’t see myself as totally prevented from doing certain things. Rather, I see myself as extremely challenged in doing them. This isn’t being all PC, it’s simply that I feel ‘challenged’ describes way better how my life works.

 I am challenged, in that many, many things are difficult for me, some of which I don’t care about and hence would never bother attempting anyway, some I’ve given up only reluctantly, and others I can do only with assistance, or in small doses, or with extreme care.

 So I’ve decided to try and list (yes, I know, another list!) the ways in which I am challenged, ways which aren’t likely to change anytime soon.

I am Physically Challenged. It is true that many physical activities which others take for granted present significant challenges for me. CFS imposes limits, as does arthritis, how severe depends on how bad my conditions are on any given day. (The ankle, of course, also imposes its own set of limitations.) I can’t work full-time, lift a lot of heavy loads, stand for a long time or walk long distances, and can no longer run or dance or even walk fast, even on good days. Plus, I have to do far less of anything in any given day than others would, or I risk running out of ‘spoons’. Even reading or using the computer can be tiring, for instance, if I do them for too long. I am constantly calculating my spoons, to see what else I can manage that day. Some days, that’s not much at all. Other days are better, but it’s never up to the same level of activity as others can do.

I am Sensory Challenged. I’m challenged, daily, to cope with the sensory barrage of everyday life. I can largely avoid or minimise it in my own home, and to some extent outside it too, eg going to the supermarket when it’s not so busy. But not always, even at home. And sometimes it’s totally overwhelming, and I just have to escape, withdraw, and do my best to avoid a meltdown. It’s a perpetual struggle, and one I know I’ll have to deal with for the rest of my life. And one which others often underestimate or don’t take into account, adding to the struggle.

This challenge is due to not only my AS, but also my CFS. When I acquired the latter, it made already acute sensitivities far worse, especially around glaring lights, certain types of noise and strong chemicals. My intolerance of the latter is especially acute, and means I simply don’t use a lot of fancy cleaning products in my home, as well as strong-smelling toiletries and the like. It’s an aggravation I can avoid, so I do so.

I am Executive Functioning Challenged. All my life, I’ve had to struggle just to get my daily life in order – getting myself to school or work, keeping my house clean and tidy, or just following reasonable routines that keep my life from descending into absolute chaos. When I was a child, my parents, especially my mother, structured things for me a lot, though I do remember she found it frustrating that I was such a ‘daydreamer’, as I was called then.

As an adult, I had to work hard for many, many years, before I established ways of living that suited me. And even then, my routines were (and are) easily upset. Sometimes people have implied I’m too fussy or rigid about them, but I know what happens if I’m not, I know how easily things can fall apart. I’m a bit more flexible now than I used to be, but only within certain limits. Because even now, these routines are something I have to deliberately push myself into completing. Every. Single. Day. And still, I often fail to achieve order. It’s an ongoing battle.

I am Anxiety Challenged. For most of my life, from adolescence on, I would probably have met the criteria for some kinds of anxiety disorder. Trying to avert or cope with sensory barrages, social situations and daily functioning problems, the whole blasted confusing torrent of modern life, for me meant living in a constant state of hyper-anxiety.

 I’m not talking here about a little nervousness, which is what most people (NTs) mean when they say ‘anxiety’. No, I mean the whole sweating, shaking, gasping, heart-pounding, quivering, whimpering, gut-churning, fight-or-flight, on-the-verge-of-freaking-meltdown total mess kind of anxiety. Fear, really. Fear ruled my life. What did so-and-so mean, when they said that? Why did Person X do Y? Had I unwittingly offended them somehow? Why did the things I found so overwhelming not seem to bother others? How could I avoid these things, especially when others didn’t seem to care about or even notice them? Why was I so wretchedly different to others? And on and on, winding myself into tighter and tighter coils.

These days, not only do I know the answer is Asperger's, but I’ve given up on that kind of excessive worrying. You can only exist in that hyper state for so long, and then either it implodes, or you do. In many ways, I simply don’t care what the vast majority of people think anymore. But now and again, anxiety will still return to plague me, usually triggered by some social challenge, though other things can trigger it as well. I have to do A LOT of self-talk, to unwind and calm down. It’s best, I’ve found, to avoid anything likely to set me off.

I am Socially Challenged. Like most aspies, I have absolutely no inborn social instincts. Every single social skill I possess is consciously learnt and consciously practised, and slow, clumsy and incomplete as a result. And this is in spite of deliberately setting out to learn them, to observe and imitate others, from my early adult years on. Decades of effort, however, have not really yielded all that much. I can ‘pass’ for a little while, hold a conversation for a little while, but any interaction more than the superficial, or sometimes even that, will have others looking at me sideways, giving me a puzzled or curious or “Why-are-you-so-strange” look.

So I find it best to not put too much stress on myself in the social arena, it tends to not only tip me into anxiety or overload, but be a Conspicuous Fail anyway. I stick to the people and interactions I feel are ‘safe’, or as much so as possible. Why take on challenges I don’t have to? And which I’ll never succeed at anyway?

I am Relationship Challenged. Relationships aren’t easy for anyone I think, whether NT or aspie/autie, yet this is an area in which I feel myself particularly challenged. Even many other aspies seem to handle relationships better than I can. Moreover, I’ve realised it’s not actually necessary to be in one, to be happy. In fact I function heaps better alone than I do in a relationship - I’m much happier, calmer and way, way less stressed. And so I’ve decided it’s simply a challenge too far.

Think of it this way – many people have climbed Mt Everest. But they typically do it with suitable training, experience, fitness levels, oxygen and equipment, and a big support team. Whereas for me… being in a relationship is like I decided to just take a stroll up the mountain in jeans and a t-shirt, without any equipment, support, training and so on. I’m that ill-equipped, that ill-suited, to the whole venture. And I never really got any better at it either, despite repeated attempts. Every time, I was just as raw, just as unprepared, just as inadequately equipped for the reality of it.

And so of course my relationships failed, spectacularly. Horribly. Repeatedly. And when they did, the biggest and most frequent emotion I felt was …relief. The kind of Oh-Thank-God-That’s-Over kind of relief you feel when you’ve attempted something you instinctively know is way, way beyond you, but which you feel compelled to try anyway, because ‘everybody else’ is doing it. So I made the decision some years ago not to make further attempts at relationships. I just don’t have the right emotional equipment, whatever that is, and have more than enough other stuff to deal with anyway.

So there you go. These are my challenges, most but not all the result of my Asperger's. This is my life. This is how I am challenged. How do you define yourself?