I try very hard to be careful with the language I use to talk about autistic people and autism. If you read the earliest posts here you will see that my vocabulary has changed. I haven’t gone back and corrected it because it represents an evolution in my thinking about autism, disability and advocacy. Perhaps the most noticeable shift is that I now endeavour to use identity first language because my autistic friends have stated that this is what they prefer. I know that, for some, person first language is preferable. In my experience that tends to be (but is not always) the preference of parents and carers. However, when writing about autism I am writing about people and so I try to keep the sensibilities of my autistic friends and colleagues in mind. I respect them and I want my language to reflect that.
The notion that autism is an epidemic is wrong and derogatory and is used to spread fear and hatred of autism and so, autistic people. I do not and will not describe the Pwd’s stimming, his obsessions or language delays as symptoms but characteristics of autism. Lately, though, the word I am finding very problematic is “developed.”
“Developed autism” and its variations are phases I see all too often. I see them on blogs, in books and hear them in discussions and from both sides of every possible divide. For instance, when dissecting studies, commentators – even those of a skeptic bent – tend to talk of the number of subjects who “went on to develop autism” after a given event e.g. vaccination. Not for one moment am I arguing that autism is static but we must not be lazy with our language. Overwhelmingly, evidence suggests that autism is congenital and that no postnatal event or condition causes an unaffected individual to become autistic. We, at least those of us who are on the side of well conducted science, must discuss subjects of studies who were later diagnosed as autistic, recognising that autism is innate.
Men, women and children
Adult male with autism? Autistic female? Male autistic child? Female teenager with autism? Really? Is it just me or do those descriptions read like criminal profiles or as if autistic people are merely specimens? Talk about autistic people like you would talk about, well, people. Let’s talk with and about autistic men and autistic women, autistic boys and autistic girls.
It’s frustrating arguing with the wilfully ignorant. It’s the reason I will not go to obviously anti-vaccine/pro-disease pages; that and they are censorship fiends. Sometimes, I will engage on thread that may get an audience of the undecided. The language I see used by the pro-disease to describe autistic children frightens me. Saying that a child’s life is over because they are autistic seems to me like an excuse for neglect and abuse. I understand that confronting people who are spreading dangerous misinformation is, to put it mildly, trying. Using words that denegrate people with learning disabilities like retard and retarded to mock science deniers is tacit agreement that the learning/developmentally disabled are of inferior worth as human beings compared to the neurotypical.
Retard is the word that gets shouted at people, just like my beautiful Pwdin, for having the temerity to be out in public whilst disabled. When the homes of disabled people are vandalised, it is “retard” and “spaz” you see sprayed on the wall. Those are the words that get scratched into cars, and wheelchair accessible vehicles. The word is used as a weapon to oppress, demean and dehumanise. I know not one of my friends in real life or in the internet world who would use the N- or F- words yet some whose opinions I respect and hold in high regard still use retard, retarded or promote work by others who use these words as terms of abuse. Please consider your use of the term “retard” and its derivatives (including f***tard). More than that, if you wouldn’t let terms of racial abuse or homophobia go unchallenged then please challenge others on their use of “retard”, “retarded” and other ableist language.
Perhaps you think I am being over sensitive. It’s hard not to be when the person you love most in the entire world has this word used against him for flapping, singing, feeding from a bottle or being in a major buggy. If you still think that using the r-word just isn’t so bad, please take the time to read this post. It is written by Alyssa, a young autistic woman who writes the Yes, that too blog. In her post for the Autistic Self Advocacy Network entitled Calling People the R Word, she writes
“If people didn’t think that having an developmental disability made you inherently worse than or less than, we wouldn’t have the problem we currently have (that developmental disability is consistently used as an insult).”
I don’t know how most people are raised, but even though I liberally use the F-bomb (obviously, you know that), I never use the R-word or the C-word.
Here’s why. When I was in college, I took a genetics class and learned about various genetic deficiencies. As part of the clinical part of the course, we spent time with those who had the gene mutation (and got it for no reason other than random chemical bonds). I looked beyond the clinical aspects, and found wonderful people. After that, it just made me ill to hear the word. Then as I grew up in life, I had friends who had autistic children. One was a teenage girl who would only communicate with me (other than her family). Whenever I came over, she wanted me to explain all the science I was involved with. Bored the crap out of everyone else, but it was so much fun for me, and I’m a cold, distant human being on good days.
I battle my own mental health demons, and I’m glad I am surrounded by people who don’t call me names or typecast me. That may be the payback for me not doing the same. Or just maybe because I select against having friends who are bigoted at whatever level.
People are people are people.
I think precision of language is important too. That’s why I included the stuff about “developing autism.” The pro-disease crowd like to talk about children who “developed autism after the MMR” and it seems to me their language has seeped into and pervades discussions of autism. As I said at the beginning of the post, I am careful with my language and that is a very conscious thing because to talk about “suffering from autism/disability” and other such phrases are still very much dominates the discourse which often excludes autistics and disabled people themselves.
until only recently, i wasn’t aware about the implication of the use of certain words in the context of autism. really not. i have come to think that it is what distinguishes a good public blog or forum from another. i commend you for including the word develop. i certainly get hives from the word epidemic. it’s so completely incorrect.
Autismum said: The pro-disease crowd like to talk about children who “developed autism after the MMR” and it seems to me their language has seeped into and pervades discussions of autism.
That’s because the pro-disease crowd (otherwise known as ‘Curebies’) like to ignore the fact that late-onset Autism and Childhood Disintegrative Disorder both tend to appear from the age of two, which is around the same age that the MMR is given (eighteen months to two years). Simples!
Thank you for a thoughtful post. I’m glad to have found you!
Thank you. I’m going to have a good snoop around your blog.
I hate the “suffers from Autism” line. Hate it. And no, it is not just you that thinks those types of descriptions sound like criminal profiles.
I’m glad you said that. Those descriptions always sound like something you’d hear on police radio or read on a wanted poster.
I love you Autismum!
So true. What enrages me is when social justice-aware sites where, as you mentioned, other slurs are (rightly) seen as demeaning and degrading, yet users and mods alike throw around ‘crazy/nutter/r*t*rd/schizo/mental’ etc, (often to describe criminals or people with objectionable views) and castigate and mock anyone who objects. There’ll be accusations of ‘oversensitivity’ or even worse, of being an “armchair social justice warrior” who’s “speaking out for disabled people for ally points/to be PC/spoil the fun”,, because as we know, only able-bodied NTs can use the internet *eye roll*
It makes me sick to know that the very things that make me the most vulnerable, are seen as personal failings, or a way to cheat the DWP, or worthy of mockery. My sexuality is accepted as are certain other “features” , but ableism often seems like the default option, and as natural and normal as breathing.
Pwd’s looking gorgeous BTW, quite the young gentleman! Keep on being that proud and passionate mam who we all adore.
english is not my mother tongue (i now live in Australia) and for a while i used to think that ‘retard’ might be a word that is in an transitional stage to become a term implying silliness and foolishness disconnected from actual mental disability. like indeed “fool” or “idiot” which used to be used even in medical descriptions. but i have come to realize that it is STILL part of a medical definition and also, with you mentioning that it has been smeared on walls or cars, it is obviously used in a horrible, defamatory way.
When I was a teenager, the word ‘spaz’ (or local variations) was frequently used and I had to know and understand the origins – and meet people with cerebral palsy – to see just how unacceptable it is to lightly use this word.
we have a lot of work to do about the Rword and even INSIDE the autism community to make people understand just how much language matters.
Hi, just wanted to thank you for this post! I’m here on a link from facebook. Very helpful post! I have a niece who was recently diagnosed as being “on the spectrum” but when I referred to her as “autistic” my sister became very upset. I don’t want to offend anyone! It’s just a little hard sometime to know what the right thing to say, you know?
I used to work in British television, we made a decision that “retard” used as an insulting word was akin to racist language, we were shocked at how often it appeared on American tv programmes. It isn’t used here in the same way at all, thankfully.
Words are so powerful, and it’s good to be careful with them. Thanks for a thoughtful post.
I am sure that I am guilty of using the wrong terms for autism. I just can’t keep up with all the language no-no’s. I never use the R-word, but I am not sure what the C-word is. I am sure I am a serial offender to the many sides of the debate regarding language.
Our kids are very high functioning, so I think of their diagnosis as a process. When they first entered special education, they just had a list of deficits and impairments: Speech and language impaired, motor deficits, auditory processing deficits, fine and gross motor impairment, emotional impairment, social deficits, etc., etc.(the language of therapists, not my own words). Four years later, they were diagnosed with high functioning autism, which included all the aforementioned symptoms. I do agree that they have always had autism, from birth. They always will have some autistic traits. There, I’ve offended at least two camps with that language. But, they are brilliant, smart, capable, and kind. How about those labels?
Those thoughts will also go in my blog, eventually.
My language re: autism and autistics has undergone an evolution as well, and I’m still learning. It’s interesting that person-first language still has such a foothold…all my training taught me that it was the most respectful way to refer to people.
When I post on blogs I tend to vary my phrases, by using “people first”…and…”autistic people”.
Until very recently, I was never confronted with a post back at me that chastised me for using “People with autism”…but two posters sought to engage me in a flame war. The blog I was posting on, provided information about a child who is autistic and was in residence for a short spell at an autism treatment center. The child had been viciously attacked by a drug-addled caregiver who removed him from the treatment center, took him into the woods, bludgeoned him and possibly sodomized him, then left him for dead…yet the two posters didn’t mention the forever-traumatized child who suffered traumatic brain injuries and the predator who inflicted these injuries on that child.
When I post on science blogs about ASDs/autism, I am careful to NOT use words that infer that an autistic child or adults is “afflicted”. I often state the obvious about vaccines….”There is no study that has ever associated any vaccine, the timing of vaccines, the preservatives, adjuvants, culture media or any other ingredient in vaccines…with the onset of ASDs/autism”. I then provide links to the hundreds of published studies that disprove that bogus *theory* of “vaccine-induced autism”.
Autismum said: I now endeavour to use identity first language because my Autistic friends have stated that this is what they prefer.
Thank you for listening to them. The thing that bugs me most is when people call me a ‘person with autism’ as if such an intrinsic part of my personality can be removed without completely changing me into someone who I am not. I also use ‘Autistic people’ to refer to Auties and Aspies generally, using ‘person with Autism’ only for those individuals who have stated that they prefer it, and will never defer to the desires of non-Autistic people over the desires of those on the Spectrum.