Living with Autism - a series of Twitter Threads

Over the last week, in preparation for the often well-meaning but sadly pretty misguided National Autism Week, I have written a series of threads on actual autistic experience and how to relate.  I have gathered these together on this blog post for ease of reference.

Monday 19th March – Eye Contact

Don’t make an autistic person look you in the eye.  Don’t expect them to do so.  Hell, if you’re dealing with someone who doesn’t look you in the eye, give them the benefit of the doubt.

Eye contact and its associated discomfort varies for all autistic people so this is a little generalised, but to try to help neuro-typical folk understand the deal here’s my take on it.
Looking directly at someone’s eyes feels a little like a combination of staring at the sun and accidentally catching the eye of a drunken maniac in a bar – a combination of pain and fear.

It hurts because we don’t want to do it, so it’s an effort of will to force ourselves.  The reason we don’t want to is because we don’t like how it makes us feel.  Part of me wonders whether I should even have to explain beyond that.

You see, it’s just the way we are.  It doesn’t hurt anybody.  It doesn’t cause any actual problems.  But I feel we’re not yet at the point, societally, to leave it at that so I’ll press on…

So, for me the ‘fear’ element of eye contact stems from several things, all of which swirl in my mind like a Beecham’s Powder every time it comes up.  First is a simple fear – are they ok with aye contact?

As I don’t like it, I wonder if they don’t too, so this puts me off, so I look away.

Second, is eye contact socially acceptable at this point? This you can learn over time but it still comes up, especially in transactions with cashiers etc. Bleurgh.

Third is related to second – how long should the contact be maintained? Frankly, I haven’t a clue.  Would quite like some kind of guidebook.

So there’s a terrible fear of screwing it up – eye contact where it’s not ok; staring for too long; averting gaze too fast.  None of the rules come naturally and getting them wrong can be mortifying – it’s grim.

And ultimately, beneath all of this is a simple fact – for whatever reason autistic people don’t seem to need eye contact during a conversation – it’s not required.  But we feel we should, because everyone else does.

So we’re left with a problem. We autistic folk are busting a gut to ‘fit in’ with this and many other things, all because we feel we have to. The alternative is not appropriate. And why?
Well, if I may, it’s because neuro-typical types, possibly like you, dear reader, still go all weird when we don’t look you in the eye.

You go all weird.  Not us. We’re trying really hard. Are you trying?



Tuesday 20th March – Empathy and Emotion

It is a commonly held view that autistic people can’t empathise, sympathise or show emotion.  Sometimes it is hypothesised that we can’t even feel emotion (!) As enduring as these views are, I’m afraid they are about as accuate as Accuweather…

Suggesting that autistic folk cannot feel emotion as ‘successfully’ of sympathise as ‘helpfully’ is one of many insidious ways that autism ends up being regarded as a terrible condition, one that you’d avoid using vaccinations against actual deadly diseases to prevent.

This attitude, that autism is something dreadful that ruins an individual is an unfortunate one, and something I’ll probably tweet about another time.  But back to empathy: the truth is that autistic people can empathise, just not in quite the same way.

I will, as always, use myself as a case-study so be aware I cannot speak for all autistic folk.

First, autistic people can definitely, obviously feel emotion.  We are not robots, nor are we sociopaths.  We get sad and happy and silly and all the rest.  But there is, I think, a fair point to be made.

For me, emotions are powerful and sometimes dominant, and I wear my heart firmly on my sleeve. In fact I would say that I have tremendous difficulty hiding my emotions, as we are apparently meant to be able to do.  I simply can’t.  If I’m sad, you’ll be able to tell.

However, I think it is more difficult for autistic people to identify the emotion they’re feeling – to pick it out of the chaos of our minds and hold it up to the light.  I’m always mightily impressed by neuro-typical folk who can identify exactly how they feel.  Crazy skills.

Similarly, we may not know what to do with the emotion.  I think this links to our lack of inherent social understanding – in what ways is it ok to show people you’re sad or furious? It’s hard to say, so we may come across a little…unusually.
But just because we express our happiness by shouting or anger by shaking doesn’t mean the emotion isn’t real, and certainly doesn’t mean the cause of the emotion is irrelevant.  That’s important.

As for empathy – we can identify whether you’re sad or angry or happy.  Of course we can, and I think this is true of many autistic people. I’m a slave to the general ambience of a room, hugely affected by the prevailing mood, so empathy isn’t a problem.

But I’m not sure I can pinpoint why you may be feeling the way you do.  I know I’m dreadful at this.  I’m chuffed you’re happy, but unless it’s painfully obvious, I won’t have a clue why.  So I might have to ask you.  Same if you’re sad.

I may also struggle to join you fully in your emotions, even if I recognise them.  For example, you may be sad but it could take me a while (or absolutely ages) to realise you need a hug.  Instead I’ll just sit there, feeling sad for you but not having a clue what to say.

So it may not be immediately obvious that an autistic person is empathetic or emotional, but that should not lead to a belief that these are things we can’t do.  But, and here’s the kicker…

It’s the case that empathy may not be forthcoming. We may be too stressed or tired, or we may genuinely struggle with it or showing it.  This does not mean we’re somehow broken.  Just different.


Wednesday 21st March – Sensory Overload

Sensory overload is an aspect of autism that is hard to explain, and by no means standard for all autistic people.  I have it, to an extent, so I’ll be leading with that, but some people have it to a far greater or lesser extent.  Buckle up, it’s thread time again.

Firstly, all five main senses can be overstimulated for autistic people, possibly all at the same time.  I’ll go through each of them in a moment.  As for ‘overload’, this is a discomfort that can be extreme in response to sensory stimulation.

So visual overload is being overwhelmed by the visual detail and colours and shapes around you.  In a busy space, like a city centre, the sheer quantity of things jostling for visual attention can be painful to experience, leading to panic, anxiety, migraine or meltdown.

The details of every word, letter, image or colour of a scene can be too much, as it seems the brain struggles to blur out the unimportant details.  It’s a bit like a computer game that can’t mipmap (a process that dulls graphical details at a distance.)

The brain is simultaneously interested and focused on all the details at once, which frankly is a little too much to bear. Imagine what a super-busy classroom with ever changing complex displays must be like…

Audio overload is similar – no noise is filtered out. When stressed I find it impossible to ignore sounds, no matter how inconsequential. If they build up, layer on layer, it can become distracting, horrible, painful, terrifying. Chattering classrooms are a grim example.

I think it’s fair to say audio overload can knobble just about anyone who is autistic, no matter how well they can camouflage or mask it.  I have a hunch that fairgrounds, clubs and such aren’t popular places…

Olfactory overload is something I suffer from.  In fact, I have found I spend at least half the time with my nose closed at the back (if you see what I mean – where it meets my throat) just to avoid potential smells that could throw me.

Strong perfumes, air fresheners, bad smells, petrol, whatever – they can distract to an enormous degree and even cause misery if for whatever reason the smell is disliked.  I don’t know whether smells are stronger for autistic people, but they’re definitely more distracting.

Gustatory overload (taste) is not something I experience, which is great as it means I can eat with impunity, but I know it can cause some autistic people to have very limited repertoires of food, often mistaken for fussiness or faddiness, because some tastes are dreadful.

Tactile overload can be very common, and is usually to do with temperature and clothing.  It is very common indeed for an autistic person to have significant problems with heat, with only a narrow range of temperatures felt as okay.
I can’t stand temperatures over 22⁰C, for example.  Makes holidays a bit risky.

The texture of some textiles can be off-putting and again cause severe reactions, especially in younger children.  Denim, rough cotton, linen and wool can be anathema, causing extreme discomfort and distraction.  This can lead to extremely small wardrobes of trusted clothes.

But these clothes will be loved for their softness and lack of general offensiveness, so be patientand gentle when they need throwing out after long service!

These overloads will come and go, be consistent or erratic, and cause different amounts of consternation.  But they are very real and can be very disturbing and miserable.  Schools could help a lot with this.

From reducing the amount of visual ‘noise’ on the walls (laminated posters!!!) to allowing autistic students to wear more comfortable clothing, adjustments can be made where necessary, and should be made when necessary.


Thursday 22nd March – Interests and Obsessions

One thing that is often given a negative spin in descriptions of autism is the special interests or obsessions that autistic people usually have, with them being seen as more a curse than a blessing.

Special interests (henceforth simply interests) are frequently seen as a distraction, something alien and odd that is a curiosity at best, or a pathology at worst.  Indeed, the strength of an autistic person’s interests can vary hugely, but there is much that is positive.

These interests are usually defined as being unusually intense, based on ‘unusual’ topics or displayed in unusual ways.  And yes, there are autistic people who collect drawing pins or car registrations.

What isn’t appreciated is just how integral these interests are to an autistic person, and how fundamentally they keep us grounded, happy and calm.

They act as a life line, a refuge, a safe space or sanctuary where we can retreat when things get too much, or when we are exhausted or stressed.  Indulging in our interests gives us time to breathe.

And they’re really cool! I love my interests, and I never tire of them, which is great considering how much I rely on them to keep me feeling OK.

It is true that autistic people tend to be able to maintain focus and fascination in their interests more than what would be deemed ‘normal’.  It can seem tireless, with an autistic person devouring every morsel of information about a topic.
We can very quickly become experts in our interests, because we never get bored of exploring them.  I know more about the Titanic, volcanoes, the First World War, Pokemon, Lego and Harry Potter than I’m ready to admit, because they interest and calm me simultaneously.

If I’m bored, or stressed, or freaking out I can retreat back into my head and think about these things, and this helps so much.  I may construct a mental image of the Titanic or something, all to keep me on the level.

I don’t think this is a bad thing.

We also really want to share our interests with you. So, so much. Oh, and how infrequently you’re interested! This makes sense, as us autistic folk’s interest levels are a bit intense! But still, God we’d love to talk with you more about them.

Autistic children sadly tend to learn early on that no one shares their level of enthusiasm for, say, Sonic the Hedgehog. And so it’s internalised, kept to ourselves.  I’m not sure this does harm, but I do wonder if our social miscues would improve if it weren’t the case.

So if you deal with autistic children, please listen to them when they talk about their interests. It will make their day.  Ask them questions.  Care.

And remember that there is no harm to these deep obsessions and interests, and it’s a pretty safe bet that some of the world’s greatest achievements stem from an autistic person’s indefatigable interest in a topic.

You think Darwin’s minute obsession with the details of his theory was a fluke? That Newton’s intense curiosity in physics was ordinary? I reckon some of them were autistic, don’t you?

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The New Wave of Grammar Schools

Traditional grammar schools selected their intake on passing a test, the Eleven-Plus.  This academic filter would ensure that they only educated the brightest children in any given cohort, and the rest would go to the local Secondary Modern school, the academic students creamed off.  Returning to this state of affairs seemed plausible only a short while ago, when Theresa May began pushing for new State Grammar schools, but this policy seems to have been dropped after the dismal polling of the 2017 General Election.

But can we see a different type of grammar school emerging instead – one that filters their intake by behaviour rather than by academic excellence?  This is a deeply contentious point and I accept it will be met with considerable disdain from certain swathes of the educational establishment, but I feel that this could well be becoming the standard in this new era of zero-tolerance schooling.

Over the last few days I’ve engaged in discussion with several proponents of this strict style, where any kind of misbehaviour, no matter how seemingly small, is treated very seriously.  I have found that there are general points I can agree with on principle, for example a need for everyone to get a good education, an intolerance for persistent misbehaviour without consequence and a strong SLT to support teachers in their work with children and poor behaviour.  These things all seem eminently sensible and positive concepts that I can happily get behind (and generally enjoy in my current school).  However, there is a flip side to this: everybody getting a good education morphs into something more akin to those that behave should get a good education; intolerance for persistent misbehaviour without consequence becomes the straw-man that there are schools that tolerate poor behaviour with no consequences whatsoever (when this is certainly not the case in the main); Strong SLTs supporting their staff seem to become an argument suggesting that anything other than zero-tolerance policy is inherently SLTs letting their staff down.  It is a world of distant binaries, of the blackest of blacks and the whitest of whites with not a shade between.  It is, in short, the result of several years of tribalistic behaviour that has caused teachers across the spectrum of opinion to hunker down, bed in and get ever more deeply entrenched in our viewpoints.

The fact is that many of the people I’ve spoken to recently seem to be of the opinion that if a strict behaviour policy causes students to up and leave, or get kicked out, or get home schooled then this is all the better – get rid of the difficult kids so the good ones can learn.  This ultra-utilitarian attitude seems to forget that these children don’t simply disappear – no, they have to be educated somewhere, and the imperative that they get an education for the good of society as a whole has not vanished either.  This passing the buck of tricky children is increasingly seen as totally acceptable even when its eventual outcome can only be a stratified system of ‘nice’ schools where behaviour is impeccable, and then other schools that become the collection point for all of the discarded or disenfranchised students.  A Grammar system based on behaviour, not academic excellence.

Of course, any attempt to challenge this or to ask ‘where do the other children go’ is met with derision and even sarcasm by many teachers who support these extra-strict policies, and are very rarely engaged with, the consensus being that we are simply enemies of promise, to use Gove’s memorable yet misguided phrase.  I’m afraid that this is not good enough, and to write off such a large segment of the profession as doom-mongers who (for some reason) are out to stymie the chances of young people is frankly insulting.  So we are left with an unsatisfactory situation, where it is becoming increasingly okay to vilify a portion of both the student body and the teaching profession without properly engaging with them.

Stepping Down from Middle Management

It is now three months since I informed my school that I wished to step down from being the Head of English, and just over two months since it actually happened and I went back to being a classroom teacher.  Now I have had time to reflect on and enjoy the change in my life I feel it would be useful to share the experience, just in case there is anyone out there considering a similar move but too afraid of the repercussions.

My reasons for stepping down are a mixture of personal and professional. As regular readers or followers will know, I was diagnosed with Asperger’s syndrome late last year after demanding an assessment from my GP.  This process is outlined in earlier blogposts here.  Though it was a sought-for diagnosis, it was still something of a shock and I admit it shook the foundations of my life as it had such ramifications for all of my experiences throughout life.  But it also made me take stock and be honest with myself about my role and chance of happiness – I came to the conclusion that being a middle-leader was a constant source of tremendous discomfort and anxiety in connection with my diagnosis that I had to consider removing from my life.  I was also exhausted by feeling my teaching – the core practice of our profession – was suffering as a result of the extra responsibility, and this weighted heavily on me.  I felt that I would either have to leave the profession entirely (a scary thought for a change-phobic creature of habit) or make a significant change that would get me back into the classroom: stepping down as HoD made perfect sense as a way of achieving these two aims.

There were fears, of course.  Financial considerations, pride, professional integrity, relationships with colleagues and so forth.  But here I am, three months down the line, regretting nothing and tremendously glad that I made the move.  So, how did it go?

Firstly – the financial implications.  I am not about to itemise my spending here, so I will leave you with this observation: you really do spend what you get. It seems that the stress and tension of trying to run a successful department was an expensive ordeal in itself: the nervous energy expended at work could not be expended at home, so simple things like cooking became nightmarish, with takeaways and easy-to-cook food, often from Waitrose on the way home becoming the order of the day.  Now I have the capacity to cook for my family from scratch – hearty food, bought cheaply, cooked well: it’s a much cheaper existence.  The need for treats to get through the week is diminished (I no longer feel a desperate hankering for a Dominos on a Friday night or an extra coffee at the weekend – these things add up.  Everyone’s spending habits are different, so I’m aware that my experience here is of limited use, but I can say with certainty that the financial impact of losing around nine-thousand pounds a year before tax are nowhere near as significant as I had expected. 

But what of the teaching load and worse, the marking?? Horrors.  I was truly concerned about this.  It had been five years since I had a typical 90% contact time timetable, so I was well out of practice, with full days of teaching an extreme rarity. All Christmas I brooded over the hell that awaited me in January, going back to five period days and extra sets of books to mark, but I needn’t have worried.  You see, as teaching and marking are now the only things I concern myself with, I can give them my full attention.  As such, I don’t dread or wish to avoid lessons as I may have done as a HoD, desparate to get on with the paperwork or whatever.  No – I can enjoy teaching again, immerse myself in it and take great joy in having renewed pride in my practice.  The marking is heavier, and I can’t sugar-coat that very much (I’m an English teacher after all), but again as the demands on my professional time are slighter, marking is now something to focus on and get sorted, rather than being another element of a huge stack of tasks and deadlines.  Still don’t enjoy it, mind.

I do not feel any dent in my pride at all.  This may be an aspect of my Asperger’s – I don’t know, but I do know that I have no feeling of shame or self-disappointment at all.  I gave it a good shot; I did it for four years and the department improved year on year – this is good, something to be proud of, so calling it a day is no admission of defeat: it is a declaration of intent, to put myself and my family first in the great to-do list of life.  There is a peculiarly masculine quality to the mantra that one must always strive for promotion, push for higher salaries and responsibilities, but it takes nothing else into consideration.  Where’s the room for caring for oneself?  Where’s the consideration of your children?  No, the rat-race endless ambition and drive for better and greater things is lost on me now I’m in my mid-thirties, with the ambition of my twenties something that I thought I ought to have, rather than something I naturally held.

It may not be for everyone, but I would hate to think anyone was out there flogging themselves to try and maintain a position that they didn’t actually need to.  If you’re thinking of stepping down from a responsibility, please get in touch via DM and I’m happy to chat and advise as well as I can.

My thoughts on zero-tolerance behaviour policy

What a miserable phrase ‘zero-tolerance’ is.  Its very existence condemns the concept of tolerance as something weak, haphazard or undesirable, something that ironically is not to be tolerated.  In a legal setting the phrase conjures up the harsh narcotics laws in the USA in the last 30 years, or perhaps the ASBO in the UK.  Zero-tolerance policing was a popular trend in the late 1990s and 2000s in both the US and Northern Europe, designed to combat anti-social behaviour and ‘crack down’ on persistent crime.  The policy in the USA led to a great deal of criticism, which is nicely summed up in this New York Times article of 2017.

In a school setting the connotations are more immediate and more specific – currently any talk of zero-tolerance schools will lead directly to the most famous proponents and examples, some of which are almost perpetually under fire from segments of the education community, and defended by others, often robustly, occasionally aggressively.  I won’t name them here as there’s simply no need – I am more interested in the semantics of the term ‘zero-tolerance’ and its impact on the world of education than I am in trying to ‘shame’ schools.

Tolerance, I feel, is a virtue that the privileged should seek to have in their dealings with the under-privileged, first and foremost.  It is a form of patience that those in positions of power should have with those who do not share that power, that majorities should have with minorities and that the wealthy should have with the less well-off.  It can work the other way, but primarily tolerance in my view is a balancer – a means of adjusting the scales to ensure those without privilege of any sort can still operate in a biased system.
In practice this means that a functioning society that seeks greater equality requires tolerance for difference, for unconformity, for any manifestation of ‘otherness’ at all.  Without tolerance, the imbalance will grow as the privileged benefit further and the under-privileged get more and more marginalised and maligned.  As you can probably tell, I disagree entirely with the idea that tolerance is a sort of ‘resigned’ dealing with unattractive or undesirable people or ideas with a shake of the head, begrudging them and the effort taken to work with them.  A tolerant person, I believe, is objectively better than an intolerant one, and I make no apology for thinking that.

So a zero-tolerance school is one that has eschewed the virtue of tolerance in order to attempt to improve progress and outcomes for all students, and in doing so has eschewed its commitment to providing a balance in its treatment of its students, whilst simultaneously claiming to be improving the balance – we have a potential paradox.  The issue lies in the difference between treatment of children and the outcomes of children.  Zero-tolerance policies and their effects (disruptive students removed from lessons or even schooling) are focused entirely on outcomes: getting the remaining children the best possible results.  Clearly this is not an evil motive; however, it neglects the more immediate issue of the treatment of children in the here and now, and this is where ethics and morality and indeed equality come into play.  This utilitarian focus purely on outcomes for the many ignores the needs of the few, but these few don’t disappear.  They don’t cease to exist, and these students dispatched by a zero-tolerance approach will grow up and will be members of society – members who have potentially lost their stake in society.

These students are often minorities in one way or another – potentially low-income, or have made little progress since primary school, or from a non-academic background, or have disinterested parents.  Removing tolerance for these people is removing their shot at any kind of equality, removing their chance of achieving some kind of normality.  It is having no patience for their individual difficulties, no patience with their behaviour as it impinges on the progress of others.  It is a short-sighted, limited policy that will inevitably cause later problems when these students grow into adulthood knowing that the system has no patience with them or the difficulties they have faced.  It would, I suppose, be great if all bad behaviour was simply selfishness, naughtiness with no root cause or societal basis – then perhaps we could simply wash our hands of these people as they have made the choice to behave in that manner; but unfortunately the world is not as tidy and easy as that.  Unfortunately the world is terribly complex, and the people within it even more so, and a zero-tolerance behaviour policy is one that immediately and abruptly removes any mitigating factors, brutally exposing a vulnerable minority to the same standards that far more resilient and well-adjusted individuals can meet with relative ease.

I am driven here most of all by my autism.  I hear too many reports of policies that demand, for example, eye contact and have a zero-tolerance attitude towards it.  Autistic people like myself find eye contact extremely difficult in a way that non-autistic people would struggle to understand, and this difficulty can in a child manifest in very difficult behaviour if handled poorly – we are a classic minority with specific requirements, and I would argue tolerance and patience with our particular needs is not much to ask for given the fact that we deserve as good a chance at life as anyone else.

I hope that the vogue for zero-tolerance behaviour policies has a short lifespan.  Education should be dedicated to balancing a precariously imbalanced system, not maintaining the biases that exist in society, and tolerance should not be a dirty word.

Parenting with Autism Part Two: Repetition, repetition, repetition...

I have a great deal of patience with my daughter.  It seems that I share a lot of characteristics with your average 3 year old (and I mean that in a very positive way).  Like her, I don’t get easily bored when doing something I enjoy, and I’m quite happy to do things repetitively again and again.  Watching the same episodes of Peppa Pig is fine by me – she loves it, and I enjoy the humour each time (whereas my partner is endlessly frustrated by the repetition).  It seems that I have an inexhaustible appetite for the expertise of Daddy Pig and the song of Grampy Rabbit.  Like her, I can immerse myself in what she is immersing herself in, in that total fashion that all toddlers have – books about trains, playing with the Lego, organising her books and toys.  Of course, this love of repetition, order and immersion are all characteristic of autism, but also of early childhood – I feel that my Asperger’s is somehow giving me the ability to bond even more with my young daughter, and I think this is wonderful.

Over the weekend we spent a happy few hours in the loft room with my Lego collection, which is embarrassingly vast.  I have taught her to respect Lego and the small pieces involved, so she is now very confident with it, and I with her treatment of it.  She doesn’t try to eat it or break the pieces, but is beginning to build simple structures.  She is totally over Duplo, viewing it as clumsy and unsophisticated.  We were sitting in companionly silence, snow slowly layering on the overhead skylights, both completely focused on what we were doing, but taking an occasional interest in the other’s ‘work’.  I was rebuilding something, and she was sorting out the heads and hats of the minifigures before putting them all on seats on a rudimentary 2-wheeled bus that she had constructed herself, to my quiet and overwhelming pride.  Every now and then she would ask for help with a particularly fiddly task, and occasionally I would ask her how her project was going, but for the most part we were in our own worlds and yet completely together, simultaneously.  I felt tremendously relaxed and calm.

Being a parent with Asperger’s can be extremely challenging, so I think it is important to highlight these positives.  Being autistic has allowed me an insight into her young mind that I suppose other parents may not get so clearly.  I understand the value of obsessing over details, studying differences, total immersion and repetitive tasks as they bring me comfort in the same way as they are helping her learn.  This does not mean that autistic people are children – far from it.  I think it is more that we never lose that youthful ability to focus on something completely and cut out the white noise and the nonsense that could distract us.  I hope this continues for a time, though I am mindful that as she gets older she will, presumably, begin to lose her appetite for these activities: I will make the most of this while it lasts.


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