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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