(TRIGGER WARNING: This post is about the autism study that’s been all over the news this week, which means it discusses premature death, suicide, abuse, autism-cure-rhetoric and other aspects of systemic ableism)
For those of you who aren’t aware, a Swedish study has found that autistic people tend to die earlier than the general population. (I have several issues with the BBC article I’m linking to, but chose it because it includes lots of statistics and information) This is not a blog post I want to write. It’s not something I want to spend too long thinking about, and the same probably goes for most of you too. But I’ve ended up here anyway, partly because bottling things up isn’t particularly healthy and partly because I think there are things that need to be said.
I first saw this on a Facebook post with lots of comments, mostly from parents/relatives of autistic people, saying the link should not have been posted because it’s evidently upsetting and they thought we should be focusing on the positives. And yes, the post in question should have included trigger warnings from the start. But unfortunately, ~focusing on the positives~ won’t make the problem go away. Supporting autistic people, and disabled people in general, isn’t just about inspiration porn, it requires recognising that we face problems and a huge number of them are created by abled people. In particular, neurotypical people should be aware that most things written about autism in mainstream media can be that hurtful to us. Something to bear in mind.
Anyway, the study is important, but we should keep this in perspective – it’s one study. The reduced life expectancy is on average, not universal – on the one hand that means you shouldn’t just declare it a load of rubbish because you know someone who knows someone who’s autistic and in their nineties, but on the other hand it’s not guaranteed to apply personally to you or your loved ones. It should also be noted that autistic people who obtain an official diagnosis (and are therefore included in the statistics) are disproportionately those who are for whatever reason less likely to pass for neurotypical, and unfortunately, those people will also disproportionately bear the brunt of mistreatment and abuse of autistic people. Finally, be aware of biases in how the findings are framed in media reports – the new report (although not the study itself) is by Autistica, formerly known as “Autism Speaks in the UK” until it severed ties in 2010, and the autistic community have made their feelings on Autism Speaks and their pro-cure agenda very clear indeed.
According to this study, one of the main causes of the reduced life expectancy is epilepsy, which is often co-morbid with autism. I don’t have epilepsy and don’t want to speak for those who do, so at this point I’d like to direct you to a couple of articles by the wonderful Amy Sequenzia, who is also autistic and has epilepsy. As far as I can work out from what I’ve heard, and I may well be completely wrong, a cure for epilepsy is largely wanted by those who have it, which is not the case for autism – if that’s the case, why not direct research funds there instead of co-opting those deaths to frame autism as the tragedy?
Another big contributor to premature deaths in the autistic population is suicide. Amongst those autistic people who are not considered to be intellectually disabled, suicide was found to be the second biggest cause of death after heart disease; and whilst heart disease is a common cause of death more generally, I would not be surprised if the stress and anxiety of being made to fit into an ableist, neurotypical-centred world plays a factor in that too. I’ve also seen comments elsewhere making the very good point that it can often be difficult for autistic people to access healthcare generally – due to sensory issues making it difficult to know there’s something wrong, but also due to inaccessible communications and environments and being presumed incompetent once we are able to make a point – and this may also have negative consequences long-term. A lot of this boils down to being forced to act neurotypical at all costs, dealing with the sensory assaults of environments created by people who don’t acknowledge that we exist or that autism is something that affects us above and beyond how it affects neurotypical people who have to ~deal with us~, and being bullied and abused and outcast for who we are. And all of those things are preventable.
I’ll repeat that: A lot of this is preventable. Through acceptance, accommodations and services, without having to try and make us neurotypical when that isn’t possible, at least not if you want us to still be us.
Mostly, this has made me feel angry on a societal level (because this is even a thing, and because of the way it’s being framed in the autism-as-tragedy manner) rather than scared on a personal level (I can barely come to terms with my own adulthood, never mind my own mortality!) but having said that, the timing wasn’t necessarily brilliant for me, and I do spend probably far too much time worrying that all the worst-case scenarios – the high rates of employment, the high rates of social isolation, now this – might be inevitable. But I want to end on something hopeful. It’s likely that this news will be a wake-up call for many – for autistic people to practice self-care as best we can and seek help when it’s needed rather than suffering in silence, and for neurotypical people to actually provide that support or at least think about whether their attitudes and actions are considerate and/or damaging to the autistic people in their lives and in the wider world.
We can fight this. We can change this. The next generation of autistic people do not have to meet the same fates as the last.