How to Write about Autism (or any other group, for that matter)

Update: Apparently since I’ve written this post the article in question has been removed. That’s very good news. I’m curious what led to it being removed, though. Was it the author’s choice, or was it a decision made by the people at Psychology Today? If anyone has any insights about this, I’m happy to hear them. 

Recently, on PsychologyToday.com, a blogger and career advisor by the name of Marty Nemko, who also holds a PhD in educational psychology, wrote this an article where he offers some suggestions on how to help people with Asperger’s syndrome find jobs. Many found this article offensive and devaluing of autistic people, and subsequently expressed their anger and concern on various platforms – including this facebook event. As a response, Dr. Nemko added an update to his article, defending his position while implicitly accusing those who criticised it as being easily impressionable, not representing others in the autistic community, and of actually hurting the chances of autistic people to find work. His addition is, to be honest, much worse than the original article itself.

The prejudice and misconceptions in his claims have been discussed extensively online. Gladly, there are quite enough opinionated, eloquent, and persuasive people in the autistic community, and so my own contribution might very well be redundant. Still, inspired by Dr. Nemko’s poorly written article and the way it was received, I thought I’d share some of my own realizations as a neurotypical social anthropologist writing about autism, on how to – well – write about autism. This is by no means an exhaustive list; but it does point to, I think, some of the most disturbing errors often made by people writing about autism in the media and in the academy.

If you feel I left out something important, if you feel I’ve made mistakes myself, or if you have any other contribution to make to this discussion, I’m very happy to read your thoughts in the comment section.  So, how (not) to write about autism (or any other group, for that matter):

 

You want to help people? Help them on their own terms

“Helping People with Asperger’s Syndrome or Autism Find Work” is the title of Dr. Nemko’s article. Fair enough, I suppose, but why don’t we take a few moments to ponder over the meaning of this concept of ‘help’.

Help is often thought of in very positive terms, isn’t it? It denotes altruism and empathy, reaching out for someone in need even at the expense of one’s own self-interest. But is that really always the case? I mean quite often, ‘help’ is merely used as a means of earning influence or respect, or just as a way to make money. I’m not saying that profiting from helping others is necessarily immoral, mind you. I am saying that it’s not necessarily unselfish. The details – e.g. who’s helping whom and in what way – matter.

There are many political and social implications to ‘help’ that we should constantly be mindful of as well. When someone in a position of power – political, financial, social, whatever – decides to help someone disadvantaged, the inequality between them, the same inequality that led to their respective positions in the first place, is both strengthened and made painfully visible. This might be inevitable, and I certainly don’t mean to imply that help is necessarily a bad thing for this reason. But when offering our help, even to those who seem to greatly need it, we need to be conscious of how we use the power that we just won over them. Throwing small change at the feet of a homeless person does much more harm than good; it is humiliating and degrading. “But those things aren’t important when they obviously need money for food!” you might argue. Well, in most likelihood, they could do with some cash in their pocket, yes. But does this contradict their need for respect, for decency, for acknowledgement of their humanity?

This was an obvious example. Quite often, the mechanisms of degradation to do with ‘help’ are infinitely more subtle. This doesn’t excuse us from our obligation to be mindful of them.  The goal should be to balance, as much as possible, the unequal power relations between those in a position of privilege and those in a position of need. How is that done? By acknowledging that those who are disadvantaged, disenabled or marginalized have their own idea of who they are, what led to the position they’re in, and most importantly – what should be done about it. Forcing one’s own idea of what another person or group of people need is not help. It is arrogance and audacity. And it’s no surprise that people are angered and offended when such behaviour is directed at them.

But how would you know what their ideas are about what sort of support they need? It would take such hard work to find out!  Why yes, yes it would. And if you can’t be bothered to do that work, perhaps you should reconsider your desire to ‘help’ them in the first place.

But still, there is just so much information out there. It is sometimes difficult to tease out what’s relevant and what’s not, what’s valid and what’s false. I mean, using Wikipedia as one of his sources was a very poor decision by Dr. Nemko, but the rest of his sources are not inherently bad sources of information (Autism Speaks is actually a terrible source for information about autism, for various reasons, but in order to know that, one still has to do some amount of research. He would only then learn that quoting it as “the leading organization advocating for people on the autism spectrum” is so grossly inadequate as to invalidate all his further claims almost instantly). Dr. Nemko does mention in his update to the article that he spent 4 hours with a group of over 40 people with Asperger’s, and spoke lengthily with the group leaders as well as some members.  Indeed, if what he had heard from these people corresponded with the Autism Speaks approach, for example, how could he ever have avoided making the mistakes he did? Well, this leads me to my next piece of advice:

Never assume the group you’re writing about is homogenous

Every group of people has differences of opinion among its members. These might be subtle differences, or they may be huge and insurmountable. It’s easy to mistakenly think that if you heard one perspective, or indeed ten perspectives, then you know the whole story, but that is never the case. If you’re going to write about a large population, you must assume that such differences exist, and – this is crucial – you must actively seek out these differences. Don’t stop researching until you find a controversy, and then try and determine how deep rooted and widespread it is.

I’d like to think that if Dr. Nemko was aware of the perspectives of those who subscribe to the neurodiversity movement, he would have written a very different article; if not different in its basic premise, then at least more respectful and more informed, less prejudiced and not quite as offensive.

As it turned out, Dr. Nemko did at some point become aware of the fact that not everyone sees autism as a disability, that some (I would say many) people are actually outraged by the notion that cleaning cars is a career that people with Asperger’s should aspire to, or deeply insulted by the claim that “scavenging through garbage cans” is just one of those “unusual habits” that people on the autism spectrum seem to enjoy. Better late than never, I suppose, but instead of retracting his article, apologizing and rethinking his engagement with the issue at hand, he chose a different course of action: he defends his questionable position by attacking those who found it offensive.

His attack is based on the premise that his critics represent a small few, an insignificant minority; that they were driven to criticise him under a false pretence (namely that his article was poorly sourced; an accusation that was a) absolutely true, and b) not even the main issue); and therefore can be – if not completely ignored – swiftly brushed aside. Let us look beyond his arrogance and unshakable self-conviction. Here’s the important thing: You don’t get to choose who represents the group you’re writing about. You’ve come across members of the group who feel you’re completely wrong in everything you say about them? They’re probably right. If you couldn’t anticipate their angered reaction, you’re obviously just not sufficiently familiar with the field to write about it.

Do not take liberties in defining the people you write about

Dr. Nemko uses the term Aspie very freely. In his update, he justifies this by explaining that he was told this was the term most people with an Asperger’s diagnosis preferred. I’m not worried whether that’s actually true or not; I don’t think a proper survey was ever held, and either way, this is likely to vary with age, gender and other factors.

When a person with Asperger’s identifies as an Aspie, he or she is making a conscious choice – a political choice – to adopt the label of Asperger’s in a very particular way.  To raise certain connotations. To emphasize some aspects of their neurology; indeed of their being. It’s not up to us NTs to impose this label on everyone with an AS diagnosis. This is a discourse from which we are more or less excluded, and for good reasons. Similar (though different) examples exist in more or less every other minority group.

I imagine hearing some readers sigh with exasperation, “enough with this political correctness already! I should be allowed to call people what I want”. No you shouldn’t. And if you don’t understand why, you haven’t done your research, and you shouldn’t be writing about this group of people in the first place.

(A note: When I write about people on the autism spectrum, I often refer to them as autistic (or otherwise as “people on the autism spectrum”, or simply “on the spectrum” in short). This might seem to contradict the point I just made. But here’s the thing: it’s been my experience that by far more people are offended by “person with autism”, than by “autistic person”. This is because the former implies that autism is something external to the person, while the latter implies that autism is an important part of who that person is. There is no consensus in this matter; but I’ve been given the impression that while some find “autistic” distasteful, few are offended by it. However, a great many people find “person with autism” extremely offensive, and I’ve been repeatedly told this was, in most cases, preferable. See, for example here and here)

Back to the article…  It gets worse: “Aspies … are often intelligent, kind, and eager”. And elsewhere: “most Aspies are friendly”. What might induce statements such as these? How can a population of millions be characterized by such simplistic terms? Need it be said? People with Asperger’s are a very varied group of people. Yes, many of them who I’ve met are extremely intelligent and often kind. Others less so. I’m sure there are many out there who are neither. I’m not just pointing out the inevitable inaccuracy of this statement – I’m troubled, once again, by its implications. It implies that there’s “us” and “them”. And that “we” are in a position to pass moral judgement on “them”.

And it’s also extremely stereotypical. Are Black people intelligent? Are people who use wheelchairs kind? Are homosexuals friendly? These statements are not just absurd, they’re profoundly offensive and condescending.

Do not mention prevention or cure for autism as desirable technologies

I was going to simply type “just don’t do it”, and leave it at that, but obviously this needs some further clarification, seeing as folks like Dr. Nemko still feel it is proper to express wishes that a cure for autism be found. It’s not. Here’s why: regardless of whether autism is seen as a disability or not, it is nearly always experienced by autistic people as an inseparable part of their very being, of who they are. To say autism should be prevented, is telling them you wish they had never been born. To hope for an autism cure, is telling them you would have chosen to have them killed and replaced by someone else entirely – if only you had the technology to do so. It is categorically hurtful, insulting, immoral and cruel. So… Just don’t do it.

I could probably go on, but I’ll leave it at that for now. Maybe I’ll just end with this quote from the author of the article:

If reporting based on a degree of research well beyond what’s conducted for most blog posts generates a firestorm call for it being censured and censored from activists believing that autism is a difference, not a disability, fair-minded writers, indeed any fair-minded people considering where to devote their efforts will–unless they’re masochists–turn their attention to issues other than disability, which frankly, in light of your comments, I plan to do. I’m sure you agree that’s a good idea.”

In this case, I quite agree with Dr. Nemko. If all he has to say about the vast amount of legitimate, well-articulated and detailed critique he received for this article is “you’re an ungrateful lot and I want nothing more to do with you”, then by all means! Not writing about disability is, in his case, probably a very good idea indeed. What do you think?

 

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14 thoughts on “How to Write about Autism (or any other group, for that matter)

  1. Ann Kilter

    I not sure what terminology I am supposed to use. I probably use the wrong language from time to time. I think I use both the wrong and right language when writing about the impact of autism on our lives.

    Reply
    1. tiggerthewing

      As long as you are trying to be respectful, most people won’t mind if you use the wrong language occasionally. People only get upset when someone insists on imposing their own preference over the expressed preferences of their audience.

      How I explain my own preference is as follows:

      I prefer to to be called ‘an autistic person’, not ‘a person with autism’ because being autistic is a great description of who I am and how I experience the world; and is an inextricable part of me. Just like I would describe my self as ‘a white person’, not ‘a person with melanin deficiency’; ‘a British person’, not ‘a person with Britishness’.

      However, when it comes to other conditions, it’s the other side of the line I come down on. I am ‘a person with asthma’, not ‘an asthmatic person’; ‘a person with heart disorders’, not ‘a heart patient’; because those health issues aren’t a defining aspect of who I am, and if they were cured tomorrow I would be delighted – and, more to the point, I would still be me, only even more so!

      With some things, I hop from one side of the line to the other. I have Ehlers-Danlos syndrome, a genetic mutation in one or more collagen genes which has had increasingly devastating effects on my life since birth. So, I am ‘a person with EDS’ but, at the same time (especially when with others like me) I am ‘an EDSer’. Using the person first language shows others that I am not defined by my disabilities, using the self-chosen label tells people that my life has been profoundly influenced by something I was born with and has influenced me every single day.

      Without some of my conditions I would still be myself, only healthier.

      Without EDS I would likely be… not simply an even healthier person but someone who, although recognisably me, would be noticeably different because I would not have suffered any of the life-threatening events that have influenced me in profound ways.

      Without autism, I wouldn’t be me at all.

      Reply
  2. Paul Almond

    An excellent article, Ben. It shows just how badly written Nemko’s article was, and why it was so offensive. One thing to add to this: In September 2012, Nemko made a blog post, following a visit to the same organization, that was just pure bigotry. Here it is: http://martynemko.blogspot.co.uk/2012/09/employment-for-people-with-aspergers.html. People like Nemko are part of the problem. The man has the nerve to act as if he is trying to help people with Asperger’s find work when, at least some of the time, when people with Asperger’s fail to keep jobs it will be because they ran into people like him. I have no idea what AASCEND, the organization set up (apparently) to help autistic people find jobs, was thinking when it established what seems to be a very pleasant relationship with this man.

    Reply
  3. tiggerthewing

    I was prompted to find this blog when I discovered that the writer is a Twitter ‘follower’ of mine, arousing my curiosity.

    Well, I must say that so far I am pleased to have found it. It is refreshing to read a self-confessed NT, far from being condescending, describing us as individual people worthy of respect for our individuality. Thank you, Ben!

    This article is, in my opinion (humble or not), exactly how anyone ought to be writing about people with different experiences; from the point of view of trying to learn as much as possible from the people themselves. NT and able-bodied people cannot ever know what it is like to be autistic or physically disabled and the last thing that they should be doing is projecting their own views of what they think it is like onto the people who actually live those lives.

    By the way, neither of the articles by Nemko can be found at the links provided; I wonder if the man finally grew a sense of decency and retracted them? Or was it, as seems more likely (because there is merely a ‘page not found’, not an apology), that he deleted them in a strop at being so badly ‘misunderstood’ by ‘those people’ who had the audacity to have their own views, instead of falling to their knees in eternal subservient gratitude? What kind of an ego must the man have to think that we need his help to find work anyway?

    NTs can be so clueless sometimes. 😉

    Although we can be found in every sphere of human endeavour, some careers seem to attract people on the spectrum more than others. I’m reminded of the software company, SAP, who, earlier this year, promised that 1% of its 65,000-strong workforce would be people with autism by 2020.

    A software company.

    1% by 2020.

    And no, they weren’t threatening to sack thousands of their employees – they thought that they would have to actively recruit people on the spectrum to reach that target. The management actually believes that fewer than 1% of their workforce are on the spectrum. It would be hilarious if it weren’t so sad.

    The thing is, almost nobody over 25 has an official diagnosis, especially on the so-called ‘high-functioning end’ of the spectrum (leading to the public perception that we don’t exist, that autism is an ‘epidemic’ among children). And those of us who do? Well, most of those I have discussed the subject with avoid telling employers, unless we require accommodation, in case discrimination rears its ugly head.

    My husband (like me, on the spectrum) has worked in the higher echelons of IT for well over 30 years; wherever he has worked, the proportion of colleagues who are on the spectrum has rarely been less than half, and often much, much higher. I was a taxi driver for a decade; very few of the career taxi-drivers were NT. The few I met were terrifying, to be frank; being driven by someone who instinctively tries to make eye-contact with their passenger instead of watching the road is a good way of increasing one’s grey hairs!

    The spectrumites I know who are unemployed largely fall into two groups; those who want conventional work but need accommodations (and are probably being illegally discriminated against), and those who, often because of co-morbid conditions like severe social anxiety, do not want, or can’t cope with, conventional jobs (where they have to interact with a lot of people). However, some of the latter have intermittent work in the ‘hidden economy’, doing odd jobs, creating arts and crafts from home, baby/house/pet-sitting, etc.

    What autistic people generally aren’t doing, is waiting around for someone to swoop in and rescue us from ourselves, thank you very much.

    If people like Nemko genuinely want to help, they are approaching the employment problem from the wrong end. Instead of paternalistically telling autistic people how to live our lives, how about helping to enforce existing legislation against discrimination? How about going around the country lecturing employers about the strengths of autistic employees, and how easy it is to accommodate our weaknesses without reducing our productivity? In other words, how about being a part of the solution instead of aggravating the problem?

    Reply
  4. Ben Belek Post author

    Hi Tiggerthewing,
    It’s great to have you here, thank you for the kind words and thanks so much for this very thought provoking comment.
    All best,
    Ben

    Reply
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  7. stimmycat

    Autistic people aren’t homogenous. I’m Autistic and when I write about Autism I try to remind myself often that other Autistic people aren’t all autistic in the same ways I am, and don’t all agree with me about neurodiversity. But it’s hard to research or think about the perspectives of Autistic people who think autism is something that’s wrong with us, because that stuff is so hurtful. So when I write about Autistic people in general I think it has to be biased and it can’t be representative of all of us.

    Reply
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