Regarding the Autistic Voice

If you know anything about psychology, you might be aware that the DSM, the Diagnostic and Statistical Manual of Mental Disorders, used to classify homosexuality as a mental disorder. It was in there for about twenty years, from the first edition in 1952 through to 1973/4, when the American Psychological Association (APA) voted to remove it from the list of disorders. What you might not know is that this move was partly the result of direct protest action carried out by the Gay Liberation Front in the wake of the Stonewall riots. The Wikipedia article talks about protestors heckling academic conference speakers, and storming the stage and grabbing the microphone: “Psychiatry has waged a relentless war of extermination against us. You may take this as a declaration of war against you.” Psychology is one of those interesting fields where it’s a science, but it’s also really obviously political. It’s a discipline actively engaged in setting out the limits of the ‘normal’ human life. Every disorder implies its opposite, ringfencing the normal, ordered life by strictly delineating its borders. That’s a political act which will, inevitably, be driven in part by social mores about what counts as normal living. When homosexuality was declassified as a mental disorder, critics complained that Gay Liberation Front activists were political agents intruding into the scientific process. In reality, the science was already political.

I mentioned back in February that I was diagnosed with autism. It’s not something I’ve touched on since – I’ve mostly been processing, reading, learning about it (and me). But I read the DSM entry for autism, and it serves as an interesting case study of this broader point. It’s again very firmly engaged in the process of constructing the normal. You can read it for yourself here – I’ll sample some of the language in the meantime. These are identified characteristics of autistic people:

  • “abnormal social approach”
  • “abnormalities in eye contact”
  • “Highly restricted, fixated interests that are abnormal in intensity or focus”
  • “unusual interest in sensory aspects of the environment”
  • “atypical use of eye contact”
  • “unusual social interactions”
  • “odd play patterns”
  • “unusual communication patterns”

I should say up front, I’m not looking to suggest that autism is the next homosexuality (so to speak). I’m not suggesting that it’s mistakenly included in the DSM, or that it will inevitably be reclassified as something other than a disorder. My goals are a little more modest. In the first instance, we might just observe that all of these definitions rely on the concept of quote-unquote normal behaviour. You can only describe something as abnormal if you’ve already decided what normal looks like. This point has been increasingly recognised by psychologists as well; in one recent article (citation below), the authors write that “autism is diagnosed by a set of behaviours determined by their divergence from social norms; norms that are defined within social, clinical and research cultures.” That seems like a potential entry point for our concerns about the political: how is normal defined? Who is responsible for deciding what normal looks like? Given the historical context that we’ve explored in relation to gay people, we need to be thinking about how the scientific process of diagnosing someone can intersect pretty sharply with socio-political ideas of what’s normal and what’s not.

In many ways this concern isn’t new, either. I’ve been reading recently through the academic journal Autism – I figured, you know, if I’m going to be autistic, I might as well go to the source – and I found this little curio. In their back catalogue, in the first issue they ever published (1997), they have a section titled ‘Family and personal section: personal accounts’. This part of the journal was apparently developed in response to a critique in Donna Williams’ 1996 book, Autism: An Inside-Out Approach – namely, “that research on autism needs to hear ‘the autistic voice’.” So much is written about us, studying and analysing and sort of prodding at us – given the political aspect of this research, it’s important to make sure that autistic people also have an opportunity to govern their own lives, and to offer their perspectives as subjects with agency, rather than just as objects of study. The journal accepted that critique, and set up a space in which the autistic voice could be set alongside the voices of academics and researchers, set on an equal footing as collaborators in the research process. And so, in their very first issue, 1(1) 1997, they launched this new section with – an autistic man’s ex-wife complaining about how hard it is to live with autistic people.

So – this is obviously, in the first instance, just very funny. It’s a strong swing and a miss. Saying that you need to hear the autistic voice and then offering the voice of someone who, firstly, is not autistic, and who also has some choice words to say about the shortcomings of autistic people – that’s pretty funny. It’s got the same energy as appointing a man to be Minister for Women. And again, the objection here is primarily political. It’s not without value to hear from people who live with autistic people. That’s valuable lived experience, which I think has the potential to challenge and unsettle certain academic assumptions. But we have to consider this from a political perspective. When you open your section on ‘autistic voices’ with an autistic person’s ex-wife, it implies that you’re not really that committed to autistic voices after all. It’s either a mark of disrespect, or an indication that the editors haven’t fully understood Williams’ critique. The reason why we need to hear autistic voices is because of the asshole researchers who spend all their time talking about autistic people rather than with autistic people. The call for autistic voice is therefore political; by sidelining actual autistic voices in favour of someone who used to be married to a person with Asperger’s, the journal implies that it either doesn’t understand or doesn’t care about that broader political agenda.

Anyway, we’ll go through this article at a bit more length – I think there are some interesting little details that make it worth discussing. It’s not open-source, unfortunately, although that other one I cited before is – links down below. Let’s start with the thing about being undiagnosed.

“Asperger syndrome has only recently been understood and it is only the worst cases that get to medical attention, so professionals only see people whose ‘oddness’ is so obvious it precludes them from having lasting relationships.”

“It seems to me that there must be thousands of apparently ‘normal’ men with undiagnosed mild Asperger syndrome who have been in or are in long-term relationships, and whose partners have had the same problems to a greater or lesser degree as I have.”

Both of these points are, broadly, correct. We do see this kind of pejorative language used throughout the article, by the way – autistic people are “odd” and neurotypical people are “normal” – that’s just part of the general tincture of this account. But if you can pick your way through the minefield of this (anonymous) lady’s language, the underlying point is sound. For me personally, I was only diagnosed last year – so I’ve gone through university and started my career out in the world, and up until last year, nobody knew I was autistic – least of all me. The specific features of my autism meant I could muddle through the world without tripping any red flags. Nobody thought to send me for diagnosis – in essence, my autism wasn’t enough of a problem for anyone to identify it as such. So this lady is correct. There are certainly plenty of undiagnosed autistic people out there, and they’re often not diagnosed because they’re functional enough to get along without it. The autism that we hear about, then, is often the more extreme cases – the stuff that can’t fly under the radar. Maybe that slanted perspective encourages us to think more readily of autism as a disability.

The next comment follows on from the ‘apparently normal’ comment: the lady, referring to men with undiagnosed Asperger’s, says: “I believe that their behaviour is usually mistaken for ‘men behaving badly’, male chauvinism, selfishness, indifference, or the widespread male difficulty in expressing emotion or feelings.” This observation is again astute – it touches on the earlier point about how diagnosis is a political event. Some autistic behaviours go unrecognised because they fit (lopsidedly) into a neurotypical framework. You’ll sometimes hear autistic people described as cold or indifferent, or weirdly aggressive – and that’s not what’s going on at all. It’s often just misinterpretations of normal autistic behaviour – it’s our actions interpreted from a neurotypical perspective and assigned neurotypical values, meaning and intention. In that sense, autism only really gets noticed when the neurotypical framework fails – when it can no longer account for the autistic person’s behaviour and motivation. It’s actually a big part of understanding autistic people – unpicking these learned assumptions about what certain behaviours and attitudes mean. However, at the same time, this unpicking can sometimes go too far.

“Some of the problems encountered may be: appearing to be very self-centered, selfish, thick-skinned, and indifferent to distress; inviting themselves to join you in whatever you are doing, with no inkling that they might not be wanted at that point; going from one extreme to the other; and having a very high pain threshold.”

Are these all autistic behaviours? Is this lady correctly identifying common autistic processes, or is she maybe projecting a little? Going from one extreme to the other – could that maybe be related to bipolar disorder? Also, plenty of non-autistic people display these behaviours as well. Being selfish isn’t a key marker of autism. You can’t go round looking for selfish people under the assumption they’re more likely to be autistic. There is a level of unpicking and unlearning that has to happen with an autism diagnosis, but its excess is this sort of paranoid behavioural deconstruction, where every behaviour becomes secret autism. It’s hard to judge the accuracy or inaccuracy of this lady’s assessment without knowing the specific circumstances, so we might constrain our observation to this: it’s important to reframe our understanding of autistic behaviours, so that we can appreciate the genuine intention of autistic people, but this reframing is not always carried out correctly.

“Although it is an enormous relief at last to know the reason for his behaviour, I cannot find the help I feel I need in order to overcome the stress, strain and trauma I and my family have suffered during these years.”

“Could I plead for some help now for the partners of people with Asperger syndrome and their children, who may have suffered enormous emotional and psychological distress.”

Alright, this is where I’ll display a bit of empathy. I do feel sorry for this woman. I’ve been joking around about this whole thing, but I’m mostly making fun of the editor’s decision to place her front and center in an article supposedly about ‘the autistic voice’. But let’s take a moment to acknowledge this lady’s pain. We obviously don’t know all the circumstances of her situation, but communicating between autistic and non-autistic people can be hard. It often feels like you’re just not speaking the same language. Sometimes it’s so difficult for both parties to try and figure out how the other person is stringing together concepts in their head. There’s a whole different set of mental mechanisms and values at play, and it takes time to translate all of these things. And it’s important that everyone is taken into account. Often with medical things the focus is on whoever’s sick, and caregivers are sort of just expected to put up with it. But with autism, there is this broader need to help both parties communicate better with each other, and care for each other in ways that the other can understand. And it’s not something that should be restricted to individuals – to autistic people and the people in their immediate vicinity. It needs to happen at the level of society. Everyone should have a better understanding of this stuff.

At the end of the section, this lady talks about how she’s trying to raise awareness among psychologists and marriage counsellors, and five other additional professions, “and all the other people I tried to get help from in the past and who wouldn’t listen to me.” That’s sad. It’s sad that there wasn’t the social infrastructure in place to support this family. I think we’re doing better now as a society, but there’s still some way to go. And you can be part of helping along the way. When you take the time to learn, everybody benefits. Maybe even just by reading this article you’ve learned some new or interesting little detail about what autism actually is. That’s part of how we build a better world – by taking the time to learn about these things from the source.

~O~

‘The impact of socio-cultural values on autistic women: An interpretative phenomenological analysis’, Autism 26 (4), 2021. Stella Mo, Nina Viljoen, and Shivani Sharma. https://doi.org/10.1177/13623613211037896

‘Family and Personal Section: Personal Accounts.’ Autism 1 (1), 1997. https://doi.org/10.1177/1362361397011011

2 comments

  1. What a fabulously insightful piece. It’s interesting to attempt to contemplate the complex mechanisms and ideology at play that contribute to as sense of what is normal. An exercise that takes place on ever shifting sands! Defining a condition in opposition to something so differential in the first place, it’s absurdist. After all, we know the “normal” may in part flow from society, culture, nationality.

    Therefore, speaking hypothetically, would someone diagnosed with Autism (as per the DSM) in a Middle Eastern country not be diagnosed as Austistic in a South Asian context? Or any manner of normativities we can contemplate and draw up the Austic person in opposition to.

    I look forward to hearing more of your thoughts as you go through your journey of discovery. Thanks for sharing

    Liked by 1 person

    • “would someone diagnosed with Autism (as per the DSM) in a Middle Eastern country not be diagnosed as Austistic in a South Asian context?”

      It wouldn’t be that extreme, but you’re right to identify that what counts as atypical in one culture doesn’t necessarily translate into other cultures. There’s possibility for misunderstanding there, for sure. Plenty of cultures where it’s considered rude to stare people in the face. This cultural aspect is acknowledged in the more recent DSMs, which say things like this:

      “Deficits in nonverbal communicative behaviours used for social interaction are manifested by absent, reduced, or atypical use of eye contact (relative to cultural norms)”

      I’d actually say that’s where words like ‘normal’ and ‘typical’ probably make more sense – as descriptive of culture rather than prescriptive – but when autism is so heavily medicalized as a disorder, that normativity aspect tips over into prescriptivism – it becomes an ‘ought’.

      Like

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