I have reached a point where I am just about dissatisfied with the available resources that concern autism. Some for nit-picky and occasionally inconsequential reasons like use of person-first language and others for being too condescending toward autistic people. When I tell people to simply research autism, I usually feel a small pang of regret because they are usually unarmed with the proper tools for separating useful resources from the bollocks. Therefore, I have taken the liberty of compiling a list of things to keep in mind when researching or reading about autism or any other developmental or intellectual disability:
1. Be conscious of the concept of person-first language. I’ve written about it on this blog before. The idea of person-first language is to use the term ‘person with autism’ instead of ‘autistic person’ because it ‘puts the person first and the condition second’ in an attempt to separate the condition from the person and highlight the person’s humanity. Sounds nice, right? Well, this tool is actually widely disparaged in the autism community, myself included, because by making a vain attempt to separate autism from us, one implies that autism is something bad, thereby accomplishing the exact opposite of what person-first language was originally designed to do. In addition, autistic people, if they were at all being honest with you, would tell you that they feel that autism is an inseparable part of their existence and any attempt to separate it, linguistically or physically, would fail. Would you really say ‘person with Asian-ness’ instead of ‘Asian person’ in order to ‘put the person first and the race second?’ As far as we’re concerned, ‘person with autism’ is just as absurd a term.
I should note that in some cases, the use of person-first language does not necessarily reflect the writer’s stance; for most publications, person-first language is the standard tool when discussing disabled people. I don’t approve of it but one can’t really blame the writer when this happens. If you’re reading, say, a blog post that isn’t affiliated with some larger publication, then you should keep your eyes peeled.
2. Beware of the pity porn. This is the saddest (no pun intended… sorta) and most prevalent feature of an overwhelming number of autism stories and resources: the kind that is designed to make you feel sorry for us. The kind that talks about all the difficulties that we face in a way that makes you feel less guilty about feeling superior to us. Yes, we face difficulties but pity does not help. We need empathy, patience, and a good heart.
If you are covering a story about a murder of a developmentally or intellectually disabled person, it is possible to write about it without sounding so trite. For example, Emily Shire wrote an excellent article for Salon about a man with Down Syndrome murdered by the police that turns into a little exposé on how terribly the police are trained to handle disabled people.
3. Beware of the apologetic stories, too. The existence of these stories baffles me, as they contradict the existence of the previous kind. This usually comes in the form of, say, a story about an autistic getting murdered by his mother that focuses on the mother’s struggle in a way that makes the murder seem justified. Rather than eliciting your sympathy for us poor autistic people, they exploit your secret belief that we’re better off dead.
4. Ask yourself: is the writer waxing poetic about autism at all? When people have a huge gap in their knowledge, they, for some reason, like to fill that gap by using metaphors and generally waxing poetic. It’s awesome when a great poet like T.S. Eliot or Lord Tennyson does it. It’s not awesome when Joe Schplorfgt, who was assigned by some asshat editor-in-chief to do a piece for the Bumblefuckville Post about a 10-year-old boy genius who still uses diapers, does it.
5. Ask yourself: is there any ‘neurosplaining’? ‘Neurosplaining’ is a term that I just made up and I think should catch on. In feminism, there’s a documented phenomenon known as ‘mansplaining.’ If you don’t know what ‘mansplaining’ is, check out this Urban Dictionary definition. Just change the dynamic from ‘man and woman’ to ‘neurotypical and autistic/other’ and you’ll get ‘neurosplaining’.
This usually comes in the form of a neurotypical person, usually a researcher or an autism ‘expert’, trying to explain what the autism experience is. You may also see this in the form of claiming that someone cannot be autistic, despite a diagnosis, on the basis that they are ‘not autistic enough’ or ‘don’t appear disabled,’ or something along those lines. If it’s an autism parent, they may say that someone like me is ‘not like their child’ and, therefore, I cannot speak for them.
6. Beware of anything that advocates ‘normalization.’ Our brains have been wired differently. You cannot fight against it. Don’t even try. The things that you try to fight against are usually little and ultimately inconsequential things like lack of eye contact, an odd way of walking, or bad table manners. If we do not establish eye contact, are unable to develop good table manners, and/or cannot walk ‘normally,’ just deal with it. I always tell people – rather than correcting deficiencies, major or minor – to identify the strengths of individual autistic people and nurture those strengths. Everything else that needs to fall into place will fall into place from there.
7. If a need for support is discussed, is it portrayed as a bad thing or is it portrayed neutrally? Ideally, the need for support for everyday tasks should be seen as a neutral characteristic. To piggyback off the point that I made in #6, rather than correcting the deficiencies of an autistic person, outsource the need to fill those deficiencies to a support specialist. For example, if the autistic person has trouble getting around on public transportation and cannot comprehend maps, hire someone who knows the transit system well specifically to help him or her get around. Independence is a noble goal and some autistic people are capable of reaching that point but if the person is incapable of becoming fully independent, then there should be no shame in that.
8. Does the piece suggest at any point that vaccines cause autism? If yes, then stop reading. Period.
This is the best I can do for now. Happy researching!