Feminist Aspie

Fine, Let’s Talk About The Autism Life Expectancy Study

(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 unemployment, 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.

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Think Before You Food-Police

(I’m really sorry that this is only my second post this year – I promise I haven’t abandoned the blog totally, just that I’m basically in finals mode now, so I don’t expect to get back to any sort of regular posting until summer. TRIGGER WARNING: This post discusses food, food-policing and disordered eating.)

Food is hard.

Considering that it’s literally necessary for survival, food is really, really hard. For many of us, for different reasons, in different ways. To top it off, food and diet seems to come with a particular stigma, with individual morality attached to it: the idea that if you don’t eat this, if you don’t cut out that, if you don’t have a perfectly balanced/perfectly ethical/perfectly “normal” diet, you’re a bad person. In that sort of atmosphere, we can’t talk about it – and if we can’t talk about it, we can’t ask for help or share advice about the subsection of these varied issues which can be resolved, so we’re less likely to ever be able to meet whichever standards are being asked of us. Food-policing helps no-one.

When people think of food-policing they tend to think of dieting, fatphobia, forcing people (especially, but not exclusively, women) into starving themselves to meet impossible beauty standards and so on; sadly, this remains a huge issue. But food-policing has many other faces. You may have noticed that I included “perfectly ethical” above, and – in the interests of honesty – this blog post is inspired by a thread in which people were claiming veganism is necessary for feminism and dismissing all the various obstacles to veganism that were brought up, so that’s the particular strand of “if you don’t do XYZ with your diet then you’re a bad person” I had in mind with this post. Having said that, cutting meat and/or animal products out of your diet is also subject to pretty relentless food-policing, whether by outright mockery or concern trolling and telling vegetarians/vegans that they can’t possibly be healthy when they know they are. People with certain food allergies or intolerances are routinely mocked for those too, even though they have absolutely zero choice in the matter.

So, before you judge, you may want to consider the following:

  • Class is a thing. Poverty is a thing. Not everyone can afford to implement whatever you’re advocating. If something has saved you money personally, that’s great, but options that are cheaper long-term often require higher costs initially, which can mean it’s not an option at all.
  • Whilst money has a big part to play itself, financial difficulty brings other difficulties too. After long working days, many don’t have the time or energy to cook in a certain way, or teach their children to do so. Poverty can also be linked to mental health problems, which make food harder in their own right.
  • Disability is a thing – or rather, it can be many things. Some people need to eat certain things. Some people cannot eat certain things – at least not without really messing up their health – and this often eliminates lots of food from the options pool from the start. Adding additional restrictions on top of that can be expensive at best and downright dangerous at worst.
  • It isn’t always just about the actual eating of the food – planning, buying, and preparing food requires spoons and energy and executive function and not everyone can take those things for granted. Personally, it’s this stage which is often the giant hurdle for me. At the moment I rely quite heavily on the fact that my university offers meals during the week, and things really went a bit pear-shaped for a while on my year abroad, which also scares me for the future. And again, the constant feeling of being judged that comes with food adds so much to that – the more I’m worrying about what other people in the kitchen will think if I make a “silly” mistake, the less likely I am to make it into the kitchen at all, which means I’m even less confident about it, and so on.
  • I feel like this shouldn’t need saying, but eating disorders are a thing, and constant bombardment with moral judgments about what you as an individual should and shouldn’t eat can be particularly damaging for those affected.
  • If you fit into one of the above categories and you’ve made it work (or know someone who is/has), that’s fantastic, but remember you (or they) are not everyone. Even the same disability can affect different people very differently – autism is just one example of that. My main issue here is executive function and anxiety as mentioned above; for others like me, the main issue here is sensory overload, with some tastes and textures being physically painful; for others still, the main issue might be diverging from a long-established, safe routine.
  • “I can’t” does not always mean “I can’t yet. For example, even if I did want to cure my autism (which I don’t) it wouldn’t be possible to do so. The idea that if we’re not where you want us to be with food then we’re just not there yet is incredibly damaging. As mentioned above, sometimes food-policing can start from a place of good, and of course increasing accessibility is generally better than assuming accessibility cannot be achieved (although it’s funny how this is only considered when accessibility means doing what abled people want), but no amount of shouting at people because something may be possible for them in future does anything to actually help them do it.
  • Any sort of rhetoric revolving around ” well, if you genuinely really can’t…” plays right into the hands of an overarching ableist society in which disabled people are constantly being told we’re not disabled enough for accomodations. Too often, nobody is considered genuine in this narrative. Given this context, I imagine very few disabled people would respond by thinking “Oh, that includes me” even if you intend to include them – it’s more likely that, like me, they’ll think “well maybe if I ~just tried harder~…”
  • Don’t assume what people are or are not dealing with. Evidently, there’s a huge stigma around food, and this means the people you’re stepping over are less likely to speak out about it at all, never mind openly identify as one of the people you’re stepping over. In the case of disability, not everyone with a relevant disability will even know they have it (for instance, autism is hugely underdiagnosed in adults, people of colour, and women).
  • Unless you’re a doctor, don’t assume you know what’s healthy for a person better than they do. Contrary to popular belief, weight isn’t always an accurate indicator of health at all. And yes, vegetarians/vegans who are able to access sufficient non-animal sources of nutrients can and do live healthy and active lives, sometimes more so than some omnivores. Mockery out of ~concern~ is still mockery.
  • “But some people do use their disability as an excuse-“ NOPE. Stop. This is often just another version of “just try harder” in practice. This isn’t just fun for us, and it definitely isn’t convenient to have to carefully navigate that thing that’s literally necessary to survive and face everyone else’s scrutiny on top of that. Stop.

Food is necessary. Yet, food is hard. Think before you make it harder.

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