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.
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.
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.
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.