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

About those 'low-functioning' autistics...

In my last post, I talked about the myth of the ‘high functioning’ autistic. Now I’d like to examine the issue of the supposedly ‘low functioning’ autistics.

Functioning levels are not something intrinsic to the autistic individual, but rather an indication of ‘how well this autistic person can pass for NT’, i.e. ‘normal’. The things that are likely to get an autistic judged as ‘low functioning’ include the following –

-They can’t communicate orally. (This, above all.)

-They’re not toilet trained at an age when most NT kids are.

- They seem - and I stress seem - ‘unresponsive’ to other people.

-They stim a lot, noisily, or at times and in places deemed ‘inappropriate’. 

-They have a lot of meltdowns.

-They fail IQ tests. (More on this below.)

There is an assumption that there’s a clear dividing between ‘high’ (HF) and ‘low’ functioning (LF) autistics – ie that we think/react differently or even that the LF don’t think at all. It’s especially assumed that if an autistic isn’t speaking orally, that means they have nothing to say, that their intelligence is minimal, and their potential almost non-existent. Their abilities and strengths get ignored, and if they express anger with their situation, it’s presumed to be just meaningless rage, somehow intrinsic to their autism.

Try to challenge how ANY autistics are treated, and you’ll bump up against these assumptions. You’ll probably be told that you “don’t understand” that “these people” have a lot of “problems”, and hence, in their minds, that it’s okay to do anything which might make them ‘pass for normal’. LF, in too many people’s minds, means ‘worthless’ or even ‘sub-human’, and so all sorts of horrible ‘treatments’ of ‘these people’ are justified. There’s a serious human rights abuse issue right there. Not to mention that this actually puts ALL autistics at risk, because at any point in our lives, any autistic can be deemed ‘in need’ of these treatments[i]. 

Yes, some autistics can and do have difficulties with things like knowing when they need to go to the toilet, or understanding what is being said to them because of auditory processing issues, or co-ordinating their limbs well. Well guess what, many so-called HF types have these difficulties too. Our abilities vary a great deal from one autistic to another, and an autistic can be ‘high functioning’ in some areas, but totally ‘low functioning’ in others.

This is backed up by how, whenever I read the words of non-speaking, ie supposedly ‘low-functioning’ autistics, I find that what they say isn’t radically different from my own internal experiences. The difference is one of degree, more than kind, and trying to define us by arbitrary levels sets up a false division. The only real difference is that I can (usually) communicate orally.

So when I see a supposedly ‘low-functioning’ autistic, I see something different to what most NTs see, because I’m looking at them through autistic eyes.

When others see an autistic ‘inappropriately’ stimming, I see an autistic trying to self-soothe, or one who needs to express their delight with something, eg a food treat, or seeing a favourite person.

When others see an autistic having ‘constant’ and ’inexplicable’ meltdowns, I see an autistic driven beyond endurance by sensory overload, communication challenges, auditory confusion, or similar.

When others see a ‘violent’ autistic, I see an autistic wild with frustration at their inability to communicate, or how no-one will listen when they do try to, or at how people treat them as though they’re stupid or unable to hear or feel, or who put them through trauma-inducing therapies like ABA.

When others see an ‘infantile’ faecal-smearing autistic, I see an autistic who is deeply sensory-seeking – or perhaps one who has learnt that this is how you make people actually notice you, even if it’s only to scold.

When others see an ‘unloving’ autistic who screams if touched and rejects hugs, I see someone with painfully sensitive skin, but who nonetheless is capable of love and affection, in their own way.

When others see an autistic who scores very low on an IQ test, I see one who was probably overwhelmed by an unfamiliar situation and people, or one who has auditory processing difficulties that get in the way, or who has severe problems with co-ordination, leading the testers to think “they don’t know what an ‘x’ is”, when in fact they do know, but can’t get their hands to point to the right picture.

When others see an autistic who ‘perseverates’, or who has a meltdown if dragged away from their favourite thing, I see an autistic with a special interest, who needs their favourite object or activity to keep calm, and who almost certainly hasn’t been given enough transition time, not to mention one who could, oral-speaking or not, make this into a life-enhancing hobby, or even a career.

When others see an autistic who ‘won’t let’ their family go places like out to dinner without ‘embarrassing’ meltdowns, or who ‘doesn’t appreciate the efforts’ their parents put into taking them on holiday in ‘nice places’, I see one who is never prepared for outings, who is ‘thrown in the deep end’ of strange and overwhelming experiences, and who finds crowded and unfamiliar ‘holiday spots’ sheer torture. In short, someone who isn’t trying to make their parents miserable, but one who is themselves miserable.

When I see an autistic who can’t communicate verbally, and is presumed ‘unintelligent’, I see an autistic who hasn’t yet found, or been given, the right means of communication.

I could go on, but you get the picture. And my biggest point is, that I see this NO MATTER THE AGE OF THE AUTISTIC, AND NO MATTER THEIR SUPPOSED ‘FUNCTIONING’ LEVEL.

To those who think that autism acceptance somehow doesn’t apply to LF autistics, I say this.

While all autistics are vulnerable to ill-treatment, and in desperate need of autism acceptance, I believe that LF autistics are actually the ones MOST in need of it, both for their own sakes, because they’re almost certainly the ones most at risk of abuse and mistreatments, and because if one autistic is at risk, we all are.

LF autistics desperately need those around them to stop, drop what they’re doing, and really look at them. Without judgement or pre-conceptions. They need to be accepted absolutely as they are, before those around them can really help them.

I’m not saying that there aren’t difficult parts of being autistic, I’m saying that the biggest chunk of our difficulties is caused by the lack of understanding and the right support from others – and that THIS IS TRUE FOR ALL AUTISTICS, NO MATTER THEIR ‘FUNCTIONING’ LEVEL. Instead of striving to ‘eliminate’ their autism, it’s far better if you work with it, strive to actually understand the kid, and go from there. 

So I will not let myself be artificially separated from the LF, nor abandon them to the not-so-tender mercies of those who claim to “know best” how to “handle” them. Because they’re my sisters and brothers, or the next generation of us. I’m not letting them go. I will continue to advocate for the LF when they can’t, and encourage others to listen to them/read their words when they are able to.

And I support all other autistics, and our allies, who are doing the same. We can’t afford to let anyone divide our autistic community. Because their, and our, very well-being is at stake.

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[i] Also read Amanda Forest Vivian, “They Hate You. Yes, You.”, pgs. 124-127, in Loud Hands, Julia Bascom (ed), Washington DC: The Autistic Press, 2012.

I'm Tired of People Defining Me

I’m tired of people trying to define me. My whole life, people have been telling me who and what I am, how I should act or react, and how I should live my life.

It started very young. When I complained about bright lights or strong smells or loud noises, they told me “it’s not that bad”, and I should “stop being such a whinger”. When I was a teenager, I was told I “shouldn’t be so anti-social”, and I should “just make friends”, as though this was easy. If I tried to say I couldn’t do something, I was told that “of course” I could do it, and that I was just being “unco-operative”.

If I wore certain clothes that I felt comfortable in, I was either ridiculed or pressured into wearing more “fashionable” clothes. I was told that my behaviour was “rude” and “un-ladylike”, and that I must be “nicer” to people, especially men. Later, after I became a feminist and came out, a different bunch of women let me know I was expected to be a “right-on-sister” instead - a different set of expectations, but no let-up.

My differences were cast as personal flaws or deficiencies, and I was told that I just needed to “try harder”. They would tell me to “just relax” and “be myself”, but when I did, they said “not like THAT!” If I expressed my real feelings or thoughts, people told me I was weird, or that “nobody” felt like that, and that I needed to “shape up my ideas” or “get real”. Or they would tell me I “must” feel such-and-such, or have this or that neurosis, because of my behaviour or attitudes. I was told I should “speak up more”, or that I was talking too much and should let others have a turn. I was “too quiet” or “too loud”, “unfriendly” or “clingy” or “nosy”, and on and on. No-one, it seemed, was quite content with me, no matter what I did.

My (now-ex!) partner would oh-so-confidently explain to me what I “really” felt. Or that what I felt “wasn’t normal”, that it was symptomatic of all that was wrong with me, and that if only I listened to her and did what she told me to do, and became what she told me to be, all would be well. She told me exactly what sort of person I was, and what my faults were, in great detail. According to her, I was a terrible lover, a lousy friend, a bad mother and, she implied, deficient even as a human being.

When I became ill, some thought I was “just being lazy”, or a “piker”. Even when I finally got diagnosed with Chronic Fatigue Syndrome, it didn’t stop. There was the alternative healer who told someone else that it was a “pity” I’d been diagnosed, implying I’d use it as an “excuse” to “wallow” in my illness. And the counsellor who asked one day why didn’t I “just go for a run round the block?” This same counsellor also once spent almost an entire session ripping into me for being on a benefit. It became obvious she had a low opinion of beneficiaries, and me for being one.

Even those who accepted the diagnosis and meant well, would tell me I needed to “just take this seawater solution”, or do this or that pet therapy of theirs, or some other “miracle” cure, or “just think positively”. Or that the vitamins I was taking were “just expensive pee”, always without asking me what worked for me.

And then I discovered Asperger's and autism, and oh look, another lot of definitions. The ‘experts’ solemnly pronounced me incapable of empathy, of having emotions, of understanding others or even myself, of being able to relate to others or be a good parent, etc, etc, etc. It seemed that, once again, I was a deficient creature, barely even a human being, in the eyes of others who had never even met me.

Being autistic and physically disabled aren’t the only things about me which others have used to try and define me of course. Religions have tried to reduce my innate sexuality to a mere “lifestyle choice”, and tell me that I’m a “sinner”, and even claim, as one NZ religious leader has, that gays cause earthquakes (no, I’m not kidding).

Men have tried to ‘mansplain’ things to me, told me I “should smile more”, or suggested I “don’t understand” how the world works. Able-bodied people have tried to ‘able-splain’, in the same patronising fashion, without bothering to find out first what I actually already know or don’t know. Or they’ve treated me as if I was mentally deficient, again without bothering to find out anything about me.

Sometimes even other autistics don’t understand me, their image of me seems to be incomplete, or even totally wrong, like the one who told me I was a “man-hater”, when I challenged his sexism. It never seems to end.

But my feeling now is – NO.

NO.

Enough.

I’ve had enough of this. I refuse to allow my life, my very self, to be defined by anyone else, ever again. I am what I am, and that’s good enough for me. And it’s just going to have to be good enough for the world too.

Everyone has their bottom line, the point beyond which they won’t and can’t go, and this is mine.

I don’t mean I’m going to go around wildly starting arguments or pushing anything on anyone. I do mean I will stand my ground, and no longer allow others to define me, to tell me what I am or should be or how I should live my life. I will back off, but I won’t back down.

This is me. The real me, as defined by me. Get used to it.

Stupid And Smart At The Same Time

I came to the conclusion recently that I’m stupid. Actually this is not a new conclusion, but an old one revisited. I’ve always felt ‘stupid’, and sometimes have even been told I am. I writhed in shame at my stupidity for many years, trying desperately to conceal it, to pretend I ‘knew what was what’, or ‘knew it all along’, or withdrawing from interaction rather than risk revealing the depth of my stupidity. I was so ashamed of it, embarrassed by it, angry at myself for ‘not learning’ and ‘not knowing better’, especially when ‘everyone else’ seemed to ‘just know’ these things.

By ‘stupid’, I mean that socially, I’ve always fumbled, blurted, made glaring errors, tripped over my own feet or put my foot in my fat gob (metaphorically speaking), and generally trampled all over other people’s sensitivities, like the proverbial bull in a china shop. Even now, after all my years of watching, learning, imitating and practising social skills, I still do these things with monotonous regularity. It seems every situation is different, the rules keep changing, and I can’t keep up, or there is some rule I somehow never learnt, and haven’t needed till then, and only find this out when I transgress it. Or I forget ‘old’ rules and blunder across the invisible lines, because I’m tired, overloaded or thinking of something else. Social interaction is full of such traps, and often seems a business of smoke and mirrors, where you never know what’s awaiting you.

I’ve also always been ‘stupid’ when it comes to everyday things, whether it be organising myself and my belongings or just doing ordinary tasks that others take for granted I will know how to do. The order or method of doing things that others, once again, ‘just knew’, never occurred to me, unless I was specifically shown it, and shown how to do it, with what objects, in what order. So I would do household tasks I was set, or organise my school things, for instance, in ways that seemed okay to me, or which I was often just guessing (hoping!) were right, but which would have others bewildered, scornful, laughing at me, or even getting cross. These blunders happen less frequently now, but they do still happen. I’m still stupid.

And yet at the same time as I’m stupid, I know I’m smart. I frequently notice details others miss, am often able to find the lost sunglasses or piece of paper quicker than others, and can keep track of lots of little things, which makes me invaluable in detail-orientated tasks or jobs. Which doesn’t mean I’m incapable of grasping the ‘bigger picture’, just that I usually have to build it up from the small things. And when I do grasp that big picture, I often do so more thoroughly than my NT counterparts. It’s this, plus that attention to detail and lots of studying and research (I always did waaaaay more reading than the standard reading list) that saw me get plenty of A and even A+ grades at university level. Academically, stupid I am not.

I also have a much better memory than many around me, often being able to recall conversations or events that happened months, years or even decades ago, to the astonishment of others. I remember details they’ve forgotten, about holidays or other things that happened when I was a child even. Mostly, it’s a visual memory too, so I can draw or verbally describe the events, usually well enough for others to recognise the place, time, etc, and trigger their memory.

I have a broader general knowledge than most people, often knowing obscure facts about all sorts of things that I’m then amazed others don’t know! Plus I have a fairly in-depth knowledge of my special interests, and could probably pass an exam in some of them without studying. (Just this morning, I was complimented on my almost-encyclopaedic knowledge of one of these areas.) I can often scan new information and grasp it fairly quickly, especially if it can be compared to something I already know, or it’s connected to one of my special interests.

Then there’s how my brain is constantly active, with thoughts, ideas, images, scenes, scripts and dialogue playing themselves out inside my head, some of which end up being written down as blog posts, articles, stories, whatever, or become images I paint or draw. I find it almost impossible to stop thinking, probing, examining ideas, I am constitutionally incapable of just blindly accepting any kind of ‘party line’, and resting there. I always want to go further, probe deeper, know more. It’s a strength of mine, I believe.

I’ve also used my intelligence to compensate as best as possible for my ‘stupidity’. Not only have I painstakingly learnt as many social skills as I can, I’ve also taught myself many things I started out adult life not knowing, from how to use tools or machinery to how to do various things online. Given a little time, I can usually figure out how to use anything new – generally by doing the revolutionary (!!) thing of actually reading the instructions. Sometimes I’m a little slower than others might be to learn new things or routines, especially if it’s a new situation way outside my comfort zone or I’m feeling under stress, but once I do grasp something I generally end up knowing it better than others, and remembering it better too, long term.

So how can I be so stupid, and yet so smart, at the same time?

I’m convinced both are due to my Asperger’s/autism. Socially, I’m ignorant, still, and likely to remain so. I’ve learnt as much as I can, but it seems I can’t improve any further without that mysterious something, an extra sense maybe, that all NTs seem to be born with. So I’ve decided to just accept that I’m stupid, and always will be, in the social-interaction and executive-functioning areas. So be it. There’s actually a certain relief in that, in no longer trying to conceal it or deny it. Because even if I am stupid, I’m still glad to be me, and to also have the kind of smarts that go with being Aspie/autistic, and with simply being me. I wouldn’t be any other way.

How do other aspies/auties feel? Have you ever been called stupid? Do you think you’re stupid? Do you feel stupid? And yet really intelligent about many things, all at the same time? Is this a common thing? I have a feeling that it is, but I’m curious to know about others’ experiences.