Don’t ever assume autism researchers know what they’re doing.

Ballastexistenz

This is my post for Blogging Against Disablism Day 2016.  Like many of my posts, although it focuses on one specific situation (autism research) it applies to a much more broad set of circumstances if you look at it closely.  I was originally planning on doing something much more ambitious for BADD, but reality (and the reality of being a disabled person) got in the way of that.  So here is a different post that was fortunately written long in advance.  I hope it can serve as a resource for a lot of people, because I’ve been asked about this test a lot, and I usually only manage to describe part of it.  This is the first time to my knowledge that anyone has said all of these things at the same time in one place.  Apologies for the lack of sourcing, but I’m a blogger, not an academic, and…

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Autistic Creative Challenge 3: Special Interest

The first thing to know is that I, personally, hate the phrase “special interest”.  I know it’s gained currency, and if other people want to use it, it’s up to them, but I don’t find the term at all helpful.

It’s partly just my own hang-ups: I know this. I spent a decade thinking I wasn’t autistic and telling myself other people must relate to things in the same way I did. Even though I have been diagnosed, I still spend a lot of time in various intensities of denial, telling myself that my interests are just ‘normal’ interests. It’s also related to my environment, I suspect. In Cambridge, and I’m sure in universities in general, it’s common for the academics you come across to have very niche interests within their field that they spend years studying and enjoy discussing, and clearly they aren’t all autistic, so I don’t like there being a term that implies that autistic people are the only ones who engage with their interests with such intensity and focus.

That said, it’s painfully evident that I don’t engage with things that interest me in the way lots of people seem to. I won’t go into detail as I don’t feel the need to share this stuff for external validation, but it does seem likely that (a) denial or not, I am autistic, and (b) this influences how I relate to things. However, I don’t think the term ‘special interest’ is informative except in discriminating between things I’m casually interested in and those I’m obsessively excited about. And if I DO want to talk about things that fall into the latter category with people, the term ‘special interest’ feels far too benign to capture the enthusiasm and joy I experience when engaging with them.

Autistic Creative Challenge 2: Stimming

I’m already really behind on these, oops. To try and catch up, I’ll probably just write briefly about each topic, and perhaps publish something more ‘creative’ about them all after exams.

Stimming is a weird one, for me. I used to be a lot more suspicious of the concept than I am now, mainly because how I saw people talking about it online seemed completely at odds with how I’d seen it discussed in medical circles. The medical sources I was aware of described it as a phenomenon that autistic children frequently grew out of, and which wasn’t all that common to begin with. I’m now more sceptical of medical sources than I was when I was first learning about this some years ago, and more at ease with the notion that it’s far more common than they often seem to think. A big part of that has been reflecting on my own experience and noticing how many of my own behaviours count as stimming.

I’m still not completely comfortable with the term and how it’s used sometimes. I’m not personally keen on using it at the moment, and prefer to describe any given behaviour of mine with reference to the behaviour itself, and perhaps its purpose. I also don’t like how ill-defined the boundary between habits and stims seems to be – as far as I’m concerned they’re distinct, but some people seem to use them almost interchangeably, which bothers me as I definitely feel there’s a difference between nervous habits I have (e.g. nail-biting, which some people describe as stimming), and behaviours I pursue for sensory purposes (e.g. rocking, swaying, humming/other vocalisations, touching/listening to/smelling/looking at things, finger flicking, tapping).

Autistic Creative Challenge 1: #RedInstead

Capture

For those who aren’t sure what this hashtag is supposed to mean, it’s been created as an alternative to Light it Up Blue. Very briefly, this is an awareness campaign, popularly, though not uniquely, associated with the US organisation Autism Speaks. Lots of people have a better awareness of the harms propagated by this organisation than me,  and have written more eloquently on the subject, so I won’t go into detail here, but you can find lots of information online.

This first challenge response isn’t too imaginative: I just switched my screen filter to red and screencapped my dissertation bibliography so far. My dissertation is actually on the ethical issues surrounding prenatal screening for spina bifida, but I’ve been reading a lot of disability rights stuff in the moral philosophy literature. It’s extremely frustrating how ingrained the ‘disability=lesser’ stigma has become, and many moral philosophers take a dim view of disability-centred civil rights movements. Fortunately, there have been a few philosophers over the past fifteen years or so who have been trying to expose the flaws in the Academy.

One aspect I’m particularly interested in is how non-disabled lay people/healthcare professionals almost universally expect disabled people’s overall happiness and quality of life to be much lower than disabled people themselves rate it to be. Lots of philosophers have tried to claim that this is because disabled people are simply wrong about their own quality of life, but there are philosophers who are contesting this, thankfully!

Anyway, I thought this was relevant to the idea of “red instead” as well as the general spirit of not letting people talk over us and challenging stigma around autism.

Autistic Creative Challenge

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Some people may be aware that it’s Autism Awareness Month in April. I’m not sure how much influence it has in the UK, as I’d never heard of it before I started spending more time on tumblr – regardless, the idea of this, and various other ‘challenges’, is to promote autistic voices and drown out the businesses and others with harmful ideas who claim to speak for us. At least, that’s what I take from it. Since I’m not using tumblr, I thought I’d bring this challenge over here, instead. I’m obviously a few days late, so will catch up over the next few days. This is probably the last thing I should be doing with my dissertation deadline looming, but never mind!

Intro

Well, I’ve locked myself out of tumblr and facebook until after exams, and I can’t get a handle on twitter, so here I am. I should definitely be doing actual work, but am struggling to get started. Nonetheless!

I’m James, I’m 23 and a final year undergrad. Having been at this godforsaken uni for nearly 6 years, I’m hoping I’ll actually graduate this year. I’m trans, and more than five years into transition I have started to grapple with the idea of being non-binary – something I’m by no means open about or ready to bring into the “real world” at the moment. I’ll probably write a post about that at some point: about whether my lack of identification with gender is just related to my autism, or whether it’s, for wont of a better phrase, ‘real’.

I’m really into Muse and the London Underground, so posts about that might happen at some point, as well as some on autism and disability rights (my third year dissertation is taking a disability rights approach to the concept of quality of life, particularly with reference to prenatal screening and spina bifida. It’s pretty cool).