I’m Dying to Speak to You

In this post written for autism acceptance month, autistic anthropologist Gerald Roche discusses connections between the communication styles and life expectancy of autistic people, and encourages sociolinguists, linguistic anthropologists, and applied linguists to help work towards a better life for autistic people. 

Content warning: This post discusses suicide, sexual and physical violence, discrimination, and negative attitudes about autistic people. If you are in Australia and find this post distressing, you can call Lifeline on 13 11 14 or chat online. Lifeline offers language support services. For non-urgent information about autism, call the Australian national autism helpline on 1300 308 699.

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Hi 👋 I’m simply dying to speak to you! I have so much I want to tell you about being autistic because I’ve learned so much since I found out that I’m autistic. I’d love to tell you everything I know but that would probably take too long, so let me just tell you one thing about being autistic. Let me tell you why I went online and searched up “autism life expectancy” soon after I was diagnosed.    

Around that time, I’d just published an article examining how linguistic minoritization reduces life expectancy. To write that article, I’d been reading across literatures in the anthropology of violence, genocide studies, and critical public health for several years, learning about how different minoritized populations are subject to structural violence that produces a ‘slow death’ and reduces their chances of living a long, healthy life. This creates ‘death gaps’ in the social fabric, where the ultimate benefits of privilege are additional years of existence. So when I found out that I was autistic, I had a sense that I might be living in a death gap. And I was right. 

Autistic people in Australia, where I live, have a life expectancy 20 years below the national average. Similar findings have been produced elsewhere. Studies from the UK, USA, and Sweden all show that autistic people die alarmingly early. A recent study in The Lancet has suggested that the ‘death gap’ might be closer to 7 years, showing that the figures are still being debated. But, the pattern of severely reduced life expectancy seems clear. Why is this, and what does it have to do with language?      

First, it’s important to understand that differences in communication styles and preferences are central to how autistic people experience the world. Whilst autistic people don’t speak a different language from allistic (non-autistic) people, our communicative practices are vastly different from those of allistic people. The differences are found across multiple areas of language, including acquisition, gesture, pragmatics, lexicon, and preferred modalities. Failure to acknowledge, accept, and accommodate these communicative differences plays a crucial role in reducing autistic life expectancy. 

The most direct connection between autistic communication and premature death relates to health communication. Autistic people experience increased rates of multiple chronic health conditions, including physical health problems across all organ systems, as well as increased rates of multiple mental health issues, such as anxiety and depression. The impacts of all these health conditions is multiplied by failures to accommodate autistic communicative styles and preferences in healthcare settings. For example, one study from 2022 found that many autistic people struggle to make doctors’ appointments by phone (we generally have a strong preference against using phones), and then experience difficulties communicating with doctors, often feeling misunderstood. A 2023 study from Australia found that autistic people frequently felt that healthcare providers did not take their concerns seriously. These communication issues potentially result in delayed treatment, undiagnosed conditions, misdiagnosis, healthcare avoidance, and other problems that lead to poor health.  

Beyond issues of health communication, there are also more diffuse links between communication and the premature death of autistic people. To understand these, we need to think about autistic people as a minority group who experience “exclusion due to discrimination, stigma, and their perceived inferiority.” Since communication is part of what makes us different, it is also part of what makes autistic people vulnerable as a minority. 

Like other minoritized groups, autistic people experience personal and systemic discrimination from the dominant population. The press typically reports negatively on autistic people. Derogatory views of autistic people circulate openly online. Allistic people find us to be deceptive and lacking credibility, in part because of our ‘low quality and inaccurate’ facial expressions. They judge us as less likable, trustworthy, and attractive than allistic peers, and have reduced interest in pursuing social interactions with us. Even when allistic people express explicit positive views of autistic people, psychological testing shows that their behavior is guided more by their implicit negative views. Exposure to such bias and stigma is ‘constant’ for autistic people.

Rather than simply experiencing bias and stigma in the abstract, they manifest in our lives as violence. This begins in childhood, with autistic children experiencing much higher rates of multiple forms of violence than their allistic peers. This continues into adulthood, with autistic people experiencing higher rates of several forms of violence, including sexual harassment, stalking and harassment, sexual violence and physical violence, producing a condition known as poly-victimization. One recent study found that 99.6% of autistic adults had experienced at least one form of violence. Autistic women suffer disproportionately: in one study, nine out of ten autistic women reported being victims of sexual violence. Surrounded and overwhelmed by this violence, many autistic people normalize it as an inevitable part of our life, and even blame ourselves for it. 

Allistic people are able to target us for discrimination and violence in part because our communicative difference makes us visible to them. Perhaps not surprisingly then, many autistic people engage in ‘masking’ or ‘camouflaging’ – suppressing visible signs of autism, such as stimming, and changing our communicative practices to be more acceptable to allistics. However, this only defers the direct and immediate harm of allistic discrimination and violence. In the long term, masking is bad for our mental health, leading to higher levels of depression and anxiety, as well as lower self-esteem. It also contributes to autistic burnout, a debilitating condition characterized by “exhaustion, withdrawal, executive function problems and generally reduced functioning.” 

Masking, discrimination, and violence accumulate in a form of ‘minority stress’ in autistic people that results in “diminished well-being and heightened psychological distress.” In research carried out with other minoritized populations, the impact of such chronic stress on the body has been described as a ‘weathering’ that reduces overall immune function and leads to higher incidence and severity of disease. Chronic discrimination and violence thus harm autistic people both physiologically and psychologically. 

But perhaps the most distressing and tragic impact of this violence and discrimination is autistic people’s increased risk of suicide. Numerous studies show that autistic people are more likely to think about, attempt, and commit suicide; a 2023 meta-review of this literature concluded that “suicidality is highly prevalent” in the autistic population.

When I look at all this information as an autistic person, even though I’ve only learnt the statistics recently, none of it is particularly surprising. It more or less accords with my own lived experience. However, when I look at this information as a researcher, I am surprised: not so much by the information itself, but by who produced it and how. 

We are looking here at a population that is minoritized, in part, because of communicative differences. They are then subjected to discrimination and violence, with tragic outcomes. Despite the centrality of language to this situation, research in this area is led primarily by psychologists, with some speech therapists, a few sociologists, and the occasional anthropologist. The cluster of allied disciplines that look at language and communication in relation to social justice, including applied linguistics, linguistic anthropology, and sociolinguistics, have so far had very little to say about this issue. 

It’s clear to me that our disciplines have a significant contribution to make here. We collectively know so much about the harms of language: slurs, labels, insults, jokes, and insidious discourses. We pay attention to the maldistribution of respect and resources to different language communities. We study how minoritization is produced and reproduced in everyday institutions, like schools, and how it enters into the most banal and intimate spaces and relations. We think carefully about how policy and practice stratify, exclude, and harm through and on the basis of language. And we also have plenty of ideas about what justice looks like, and the languages it uses. It therefore seems to me that we have an important part to play in conversations about what it really means to accept autistic people, and how to go about doing it. As a researcher, I know that we can, and as an autistic person, I hope that we will. Because right now, I’m dying to speak to you, and I wish that I wasn’t.