On ‘symptoms’

A while back, I wrote a rather lengthy post about social interaction, empathy, and so on, and how (in my opinion), every little bit of behaviour we see in front of us comes down to how someone processes information. I’m still banging on about this, because I still get repeatedly fed up with people – although mainly I’m talking about neurotypical ‘experts’ and the mainstream media, here – conflating autistic people’s observable behaviour with the ‘symptoms’ of their condition. Actually, no, it’s worse than that – conflating autistic people with the observable behaviour that is the outward manifestation of ‘symptoms’ of their condition.

(Pedant, moi?)

Last week, reports were published about a study into how “super parenting” can help autistic children. I’m not going to go into the ins and outs of the study itself here; nor am I going to have too much of the moan about the term “super parenting” and how misleading, clickbaity, and potentially harmful it is (it really is, though. Seriously). The techniques being developed and studied have, as far as I can gather, some likely benefits in terms of equipping parents with the ability to understand their child’s methods of communication, and work with these. That sounds good, on the face of it. There are many problems as well, but I’m not going to go into those now.

But anyway, my main beef with all the articles and media reports was the references to reductions in “severe symptoms” such as repetitive behaviours. 

Big groan.

Once again, autistic people are reduced to a description of externally observable actions.

The effect of years upon years of seeing descriptions of my neurotype distilled in this way has meant that sometimes, very occasionally, I don’t trust myself.

Am I really experiencing empathy? Are these feelings real? Am I making an objective judgment of this situation? If there’s nothing there but my behaviour, then am I stupid when I can’t control it? Why do I need to do things in this way?

But another big thing that a fellow autistic pointed out in this Facebook post was the often inappropriate use of the word “symptoms” to describe us, and how we behave.

Now, I’m frequently changing my mind about whether or not my autism is a disability. Most of the time, I err on the side of “yes, it is”; mainly because of the social model of disability, but not exclusively (I’m pretty sure I’d experience issues with executive functioning and working memory, and difficulties with keeping sensory overload at bay when around my small children, for example, regardless of how perfectly the world might be set up for me). Being autistic – whilst, for the most part, I wouldn’t have it any other way – makes certain things difficult in a very ‘disabling’ manner, and at times I do wish that weren’t the case, however happy I am with myself these days.

For the purposes of getting formally diagnosed, it was useful to couch my autism in such terms. I used the DSM-5 criteria as a tool to get me access to an assessment, and to speed the process of screening. I did the same for my daughter.

But there are problems with what are counted as ‘symptoms’ even in many medical descriptions of autism. Sometimes it’s the things the person themselves experiences (for example, under- or over-sensitivity to sensory stimuli); at other times, it’s the stuff we can see, which is actually an outward manifestation of something we can’t (“Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change”). It’s not entirely consistent.

Okay, then.

My autism symptoms include frequently wearing sunglasses indoors, using noise-cancelling headphones when working, and wearing earplugs outdoors. My autism symptoms include cutting the labels out of clothes, and the frequent wearing of Doctor Martens boots.

My autism symptoms include vigorously shaking my fingers, shuddering, and saying “urgh!” (or similar) when I touch leftover bits of cold food, and swearing at shop assistants who tell me I can’t return a particular item of clothing when I’d been led to believe I could.

My autism symptoms include often experiencing an uncontrollable urge to dance, frequently snapping at people in the office who interrupt me when I’m busy, asking people to email me instructions rather than telling me them verbally, and not being too great at eye contact.

My autism symptoms have, in the past, included making many social faux pas, over-sharing of personal information, thinking people were flirting with me when they weren’t, or thinking people were just being friendly when actually they were flirting with me.

Some more of my autism symptoms: giving a running verbal commentary on what I’m doing as I do it; singing; repeating phrases from TV and film or lines from a song; flicking my fingers when I’m trying to think through, and make, a decision.

Does anything occur to you about any of the above list? All of it is behaviour.

And behaviour is merely an externally observable manifestation of, or response to, something that’s going on internally.

I wear sunglasses a lot indoors to ward off the tension headaches and migraines I experience from visual overstimulation – especially bright lights. To reduce the effects of sensory information overload. I block out excessive noise using headphones or earplugs for the exact same reason.

I cut labels out of clothes because I am over-sensitive to the feel of them against my skin. I often wear Doctor Martens boots because my sense of proprioception is poor, and I need the sensory input of the tight-fitting leather against my feet and ankles to help me observe what’s going on with them when I’m moving (and also because I have weak, floppy ankles, so the additional support is useful when walking).

I often get distracted because my brain struggles to filter out all the unimportant bits of information it receives from the important bits, which is why I have difficulty with decision-making, adjusting to sudden changes, processing spoken words, and dealing with interruptions. All of which is why I swear at shop assistants, snap at people in the office, limit eye contact, have difficulties interpreting social rules and cues, and indulge in a range of “repetitive behaviours” and verbal or vocal stims, to ground me, keep me focused, and help block out extraneous distracting stimuli.

I’m trying to deal with things that are going on inside me, as a result of what’s around me.

Some of the things I deal with, internally, as an autistic person, are what I would call ‘symptoms’, primarily, quite simply, because they just bloody well get in the way of me getting on with my life. My sensory processing and integration issues; the way my information filtering problems can cause me to freeze in my tracks, implode, or explode – these can feel very disabling, and symptomatic of a ‘condition’.

But even so, autism isn’t a behavioural condition. It’s neurological.

I haven’t even started on the whole host of other ‘autism symptoms’ that really are, as far as I’m concerned, just the things I do, or things I am. Attention to detail. In-depth research skills. Pattern thinking. Ability to maintain extreme focus on an activity if it interests me and if I enjoy it (and big problems motivating myself to do something that isn’t, or that I don’t). Hyper-empathy. Strong sense of justice. Tenacity in the face of adversity. Immersive, full-body sensitivity to music, art, or the written word. A tendency to dwell on something I read, heard, or watched, for days, or even weeks, after I read, heard, or watched it – especially if it’s something emotionally charged.

Some of what I feel, and do, is definitely my autism; some of it could be, or it could just as likely be down to my personality, circumstances, or adaptation and personal evolution based on my previous life experiences. There’s a real danger in dismissing a person’s lived experiences because of their neurotype, as this rather excellent article from Chris Bonello of Autistic Not Weird makes clear.

Are my daughter’s all-encompassing fascination with Lego, her enjoyment of playing with mud in the garden, or my preoccupation with the philosophical question of what it means to be human, any less meaningful because we’re both autistic? Are my worries about my family’s future, my tears at an upsetting news item, or my daughter’s giggles at a funny story, any less authentic?

It’s useful to have a list of observable traits and behaviours associated with a condition if that enables the person experiencing the condition to gain access to diagnosis, and whatever support that is available. Hell, it was useful for me, for exactly that reason (although the support is pretty lacking. But that’s for another day). I even wrote about why it’s so important for parents to seek diagnosis for their kids.

And of course, I’m oversimplifying things a hell of a lot here too. If there weren’t tangible, observable, significant differences between the way I experience the world and the way a neurotypical person experiences the world, then there wouldn’t be anything to diagnose, and nothing for which I might need a few “reasonable adjustments”.

Lists can also be useful in raising awareness (but not acceptance, necessarily) of what being autistic might look like.

But all too often, the list is all that there is. It’s all the professionals use, and it’s all the mainstream media refers to. And the list isn’t even consistent in what it describes.

We’re more than that, and we’re worth more than that.

Most of our ‘symptoms’ are things you can’t see. But even then, they’re still not all that we are.

Inclusion: getting on with “just learning”

Eight years ago, a long time before I was officially diagnosed as autistic, I was a mature student studying full-time for a Masters degree. One of the best years of my life – a year of total immersion in learning, with minimal worldly distractions. A time of luxury, in many ways.

This meant, of course, an awful lot of reading, and occasionally, having to borrow books, using a SCONUL access card, from the libraries of other universities than my own. On one occasion, I forgot to return a book from another institution by the due date, and incurred a fine as a result (many universities no longer fine students for overdue books, but this was eight years ago).

On visiting the service desk to return the book and pay my penalty (once I’d belatedly realised my error), I mentioned that I was used to receiving email reminders from my home institution about book return dates, and so I’d expected this institution to do the same.

The staff member’s comment?

“Oh no, we can’t be expected to do that. Students need to be able to organise themselves and manage their lives. They need to keep track of what books they’ve borrowed.”

Now, I’m a person who experiences severe problems with executive dysfunction. I have great difficulty planning and organising, and an appalling working memory. I now know this to be part and parcel of my neurocognitive differences, but at the time I used to believe that, despite evidence to the contrary (a 2:1 in my undergraduate degree; more-or-less consistent full-time employment since graduating; being on track for a Distinction in my MSc), I was a bit stupid and lazy.

But the point is that, back then, as now, I needed reminders to keep me on track.

My brain already had far too much to process without having to remember extra minutiae like book return dates. Having decided to return the book, I had to go through an arduous process of making preparations for my journey to the other institution, working out how I’d get there, how much time I’d need, whereabouts in the library I’d need to go to return the book, “scripting” what I might need to say to the staff member and what they might say in response, and all the other, tediously, frustratingly granular but necessary details an autistic person tends to need to plan out in order to avoid nasty surprises (which mean even more exhausting mental processing!) or possible meltdown. All of this on top of knowing that my book was late back, and already worrying that someone else might be waiting for it.

But it wasn’t just about my own executive functioning issues.

I’d started my MSc not long after top-up fees had first been introduced in England for undergraduate degrees. Many students, then as now, were having to hold down jobs as well as studying, just to make ends meet. Added to that, those students with disabilities or chronic illnesses, those with parenting or caring responsibilities, commuting students, those with unstable home environments, financial worries, and many more. An awful lot of students had an awful lot of other things on their minds besides studying, and returning library books.

Cost and resourcing aside (and yes, I’ve always been aware these are an issue – I worked in student support prior to beginning my MSc), was it really such a mollycoddling, infantilising thing to introduce a system of email reminders?

I thought about all of this back then, without even realising at the time that I had a valid neurological reason for needing a little extra help with organising myself.

This wasn’t about making things “too easy”. This was about removing a barrier that, however seemingly trivial, might have got in the way of some students’ ability to just get down to the business of learning.

And the same goes for teaching.

There are certain things I’ve always done as a teacher (I teach enterprise and entrepreneurship skills to university students, by the way).

I have always been instinctively drawn towards workshop-style delivery methods: session structures in which presented content is broken up by interactive exercises (two hours of straight “lecturing” would bore me as much as it might some of my students); classroom layouts that allow me to move amongst my students as they work (appeasing my need for constant movement to keep me grounded and relaxed); activities that focus on the application of what is being taught (because it’s simply logical to teach what I teach in this way. My subject is practical. You can’t learn it without practising it and applying it).

I like plans. Session plans. Module outlines. I like to match up my resources with the activities I have planned. I like to estimate and allocate appropriate time durations to activities (factoring in time, of course, to “mop up” after any unforeseen technical hitches, late starts, or student-thrown curveballs). I like the activities I’m using to be fit for the purpose for which they’re being used. I was constructively aligning my learning outcomes, teaching activities and assessments before I even knew “constructive alignment” was a thing in learning and teaching.

And I like well-organised resources. Well-structured, well-written handouts; good variety of online resources in different formats (and the same information presented in a variety of different formats); effective use of colour. And, again, fit for purpose. It seems logical to me that, since people have a variety of learning styles (and that, also, they learn differently depending on the situation, and the subject they’re learning), it would be prudent to offer opportunities to respond to, and work with, such a variety.

Basically, I like to be in control. It takes a lot of planning and preparation, but once I’ve done that, I’m (usually) relaxed, confident, and ready to go. Effective design of learning experiences is just good teaching, but being systematic about it also allows you to think about your learners.

But I also like experimenting with my teaching, and trying out new approaches – especially if I can see a way in which they might solve some problems for either me or my students. Because solving the problems encountered by a few can often result in a better learning experience for everyone.

I’m open to working with technology, for example – as long as it fits what I’m trying to do, there’s a genuine way it might be helpful to my teaching, and any potential benefits aren’t completely outweighed by extra time and effort.

I’m writing this after spending much of today at a work seminar on lecture capture (making audio, and sometimes video, recordings of live lectures, synchronised with any display output from a computer). It’s not a technology I see as a natural fit with my style of teaching, because I don’t “lecture” (I am, however, exploring using personal capture software to record smaller chunks of material that I can make available to my students online).

But I can imagine its value, because I remember being an undiagnosed autistic undergraduate, sitting in lectures in which not even an overhead projector, let alone slides, was used (this was the late 90s/early noughties, folks, and I was studying an arts subject). I had to rely on listening to taught content delivered almost entirely through speech – a medium I process far less well than written or visual content. It was exhausting.

Having that lecture material available as recordings, being able to review it at a time that worked for me, digest it in smaller chunks, and give myself the opportunity to reflect upon it, would have been invaluable.

Making “reasonable adjustments” is not about dumbing down. Even with those adjustments in place, some learners (or employees) will still find learning (or working) a struggle because the world is not set up for them – they do not fit with the “default”. But making those adjustments can remove at least some of the barriers which get in the way of learning or working.

Most disabled students just want to learn their subject – the same as any of their abled peers. Most disabled working people just want to be able to do their job. I know I do. I’m aware of my difficulties every day. And so I need a number of “reasonable adjustments” to minimise the effect of those difficulties on my ability to do my job. That doesn’t take away the difficulties entirely. Far from it. Which is why many of us need so much downtime. Because just doing what everyone else does “naturally” takes so much energy and, in my case, mental processing power.

We’re having to work harder. All the time.

I’m not suggesting technology as a panacea. I need more than email reminders. I’ve spent years teaching myself various time-management and organisational approaches to bend my wayward executive function into shape. Many of my strategies work really well, most of the time. But there are still times when I, a 36-year-old professional person, need direct help from my line manager with prioritising and scheduling, because my brain has too many tabs open, and too many applications running. Sometimes, things fall down, or things slip through, and I need backup.

Sometimes, yes, I need a text message or an email reminder.

Students still need real human beings to scaffold their learning, facilitate their skills development, and support them in becoming learners who are as independent, and autonomous, as they can possibly be. But sometimes, people need backup, and sometimes, in teaching, technology can complement the human, if the human employs it well.

At least several times a week, I “keep it together” during the working day despite a battery of person-to-person interactions, triggery social media exchanges, unexpected occurrences, unforeseen problems, and multisensory information overload, only to arrive home and feel the need either to: a) go straight to bed to ward off an impending migraine; or b) shout unnecessarily at my gorgeous-but-noisy small children because my sensory tolerance levels are so low.

Like many autistic people, I have extreme reactions to too much information, because I take in so much of it at once, and I struggle to filter out the unimportant stuff.

But in today’s world, information overload can affect everyone. Our lives are just so bloody busy, and there’s just too much God-damned information.

Whilst we might wish the situation to be different, we must recognise that having nothing in the world to think or worry about other than your studies, is a luxury, and a privilege, that very few students have today. It would be arrogant and ignorant to assume otherwise.

If educators can ease that load a little and allow their learners to actually focus on learning, that surely can’t be a bad thing.

For all concerned.

[Image credit: Sam MacEntee]