Feminist Aspie

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

on March 20, 2016

(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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12 responses to “Fine, Let’s Talk About The Autism Life Expectancy Study

  1. autspicious says:

    CN: death, heart disease

    I’ve sadly made the link between heart disease and autism before personally; my dad passed from a heart attack in his 40s, and the general cause was decided to be stress (not helped by heavy smoking). It’s only now a decade later, after I’ve realised in my 20s that I’m autistic, that a) my father was definitely an undiagnosed autistic and b) a lot of his stress was around things that autistic people find stressful; social interactions at work, his divorce with my mother, as well as all the other things that make living with ASD in an NT world a constant high stress environment

  2. cambriaj1977 says:

    I wrote a “reaction blog” about this same subject. I am about to enter the supposed average death age this July. You don’t have to read it, of course, but I hope that my experience can help those after me.

  3. […] Source: Fine, Let’s Talk About The Autism Life Expectancy Study […]

  4. Riniel says:

    So, being a scientist as well as an autistic, I read the actual published study. It’s definitely quite a bit technical, and slightly abelist as they use functioning labels (though they at least very narrowly define their use for the purpose of the study, which is better than most), but overall I thought it was a very good article. The study authors acknowledge the limitations of their study (including the fact that many people who are autistic in Sweden were not included if they were diagnosed before 2001 and never hospitalized or have yet to be diagnosed). They also made quite clear that this warranted further study and that while there was increased mortality in the autistic population studied, it was due to other causes. The were quite clear that the deaths were not caused by autism, but rather that autistic people had a higher incidence of comorbid genetic diseases, epilepsy, and mental health problems that contributed to a lower life expectancy. They even went so far as to say that these results indicate a need for greater understanding of autistic people and how to interact with them in the medical community. They encouraged medical professionals to learn more about autism and autistic communication so that they could better understand their patients and their symptoms. They also encouraged the development of better support for adult autistics and that better and more understandable information on health be made available to autistics and those who support them.

    I do think the reporting on this study is problematic, but I do want to acknowledge that it’s not because of a fault with the study authors, but rather the reporters writing the news articles. Whether it’s because they don’t understand scientific research as well, and therefore end up writing misleading titles to encourage clicks, or because they are pro-cure.

    • Yes, thank you so much for making that clear – I haven’t managed to read the actual study myself, but the impression I got was that the issues I was having are with the reporting. In cambriaj1977’s blog post (https://cambriaj1977.wordpress.com/2016/03/18/am-i-going-to-age-alone/ as mentioned in the comment above) they also point out that the study was published in December, yet the news reports are publicity haven’t really happened until the past couple of weeks – possibly in time for April/Autism Awareness Month/lots of pro-cure ableist stuff more generally, I suspect? (That, or some news outlets just needed a story)

      • Riniel says:

        You’re welcome. I don’t blame you for not yet having read it; it took me 3 days to work up the energy needed to read it and normally I read these sorts of articles for fun. The fact that it was originally published in December wouldn’t ordinarily seem odd to me, in my experience scientific journal articles are often not reported on by the popular media until several months after they were published. (No idea why, and that is also just my personal observations, I have no data to back it up). The timing of this one is very suspicious though, given the group that announced it to the press. I wouldn’t put it past Autistica/Autism $peaks to use it to intentionally stir up abelist, pro-cure rhetoric though.

  5. I’m not up to reading the original articles today, so I’m sorry if this is addressed there. This probably needs a content note too but idk what.

    A couple of things I’d like to know:

    * what level of stress (and abuse) is this “equivalent” to? Stress and abuse cause similar drops in life expectancy. So if we assume (maybe falsely, but as a statistical model that should be tested) that the entire increase in suicide and heart disease is due to stress/abuse, what level of stress are we looking at? Is it a reasonable model?

    * How much is attributable to comorbidities? Are there treatable comorbidities that are being “lumped in”? You point out epilepsy but what about others? Is there a significant increase over the average for those too (intersection effect)? What intersections are most significant and how can we (society, health care, etc) improve them?

    * people loooooove to point out the awful diet of me & other autistic friends. This is largely due, at least in my case, to inaccessibility: I can’t access healthy food that meets my sensory needs and works with my dietary restrictions. Is there any evidence in their data that increased food access would help? As a society how can we make that happen? Food shaming, food access, and nutrition are a real, intersectional problem.

    • All very good questions, and I wish I had more answers… You’re not the first person I’ve seen point out the possible link with consistent access to healthy foods and reduced life expectancy, and I really wouldn’t be surprised if that was a factor, although I don’t know the stats. This is maybe a shameless plug (sorry!) but in case you happen to be interested, I wrote about the damage caused by food shaming to a variety of marginalised groups a few weeks ago: https://feministaspie.wordpress.com/2016/03/03/think-before-you-food-police/

  6. […] Aspie has a good critique related to this […]

  7. […] Fine, Let’s Talk About The Autism Life Expectancy Study – My attempt at working through the upsetting (though not all that surprising) statistics around autism and premature death published back in March. […]

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