Most adults on the spectrum prefer to be called autistic, rather than a person with autism or a person who has autism. The general consensus is that autism is not a separable entity. To be “with” something or to “have” something implies that we might somehow be able to rid ourselves of that thing and still be the same person, much like someone who has been cured of a physical illness.
I have always been autistic and always will be. If I was not autistic, I would be a completely different person. My autistic neurology affects how I experience the world and how the world experiences me. I am autistic. This feels very simple and logical to me.
It is not, however, always as simple for others. I’ve noticed that a lot of people in the autism community (which is different from the Autistic community) find the use of autistic as a label offensive or at least uncomfortable. The primary argument is that “autism doesn’t define” the person that they are reluctant to call autistic (often a family member).
Inherent in that argument is the belief that autism is a negative attribute. Why else would someone be averse to being “defined” by a trait? Would we say, “don’t call Tommy intelligent because his intelligence doesn’t define him” or “don’t call Katie blue-eyed because her eye color doesn’t define her.”
Positive or neutral labels are rarely challenged. Smart. Beautiful. Man. Woman. Right-handed. Left-handed. Blonde. Brunette. Few people will object if you refer to yourself or someone else by these labels. No one will tell you to call yourself a person with beauty or a person who has right-handedness.
So why the controversy over autistic? Perhaps because autism still carries so many negative connotations. We are in the processing of reclaiming autism and autistic, but we’re not quite there yet.
Linguistic Reclamation
Reclaiming (or reappropriation) is the act of taking back a word that has been used as a pejorative. When a group adopts the use of a word that has been used to demean them, they diminish or subvert the power of that word as a weapon.
Queer and gay are words that many people consider to have been successfully reclaimed. Gay, once used primarily as an insult, has become a preferred label. Queer is still in the process of being reclaimed, but well on its way. Geek and nerd, insults a generation ago, are now common self-descriptors.
I find it interesting that there is so little discussion of autistic as a reclaimed word. It certainly fits the definition.
Autistic has been and is still used in a derogatory way. It could even be argued that it’s “the new R word.” That’s so autistic and are you autistic? have become common put downs in certain gaming and internet circles.
To be reclaimed, a word first must have been used in a way that is derogatory to the group it describes. Autistic, then, is ripe for reclaiming. And I would argue that not only does it need to be reclaimed to take away its power as a slur, it needs to be reclaimed by autistic adults with the goal of redefining it in the public’s imagination.
Even before it became an outright slur, autistic (and autism) had negative connotations. For many people, autistic conjures up the negative, doom and gloom stereotypes of ASD and little more. By reclaiming autistic, by using it as a symbol of identity and pride, we can broaden public perception of what it means to be autistic.
Happy Autistics Speaking Day!
Musings of an Aspie 
Another really interesting post from you – I do look forward to your ‘musings’. I absolutely agree with you about the power of language and the issues around its reclamation. As someone within the autism (rather than autistic) community I tend to use both phrases and to use them interchangeably – probably on the basis of nothing more than aesthetics (i.e. not to be too repetitive with phrasing). That’s not good enough though if there is reason *not* to use a particular term so I shall think again about my use of ‘with autism’ or ‘with autistic spectrum disorder’. I might have to revise some of my writing 🙂 There are, of course, cultural differences in the perception of a language , although the internet turns these things global…
Thank you. 🙂 When I write for a general audience I tend to mix the use of autistic, with autism/asperger’s, and on the spectrum. When I refer to myself, I mostly use autistic though in some situations I’ll use aspie or say that I have Asperger’s because that’s my official diagnosis and there’s no other way to say it really. Also, as you say, using the same word can get repetitive. When referring to any specific person, I defer to their preference. Most adults I know prefer autistic over the person first options but if anyone had a different preference I respect that and will use it.
Some people will argue that it’s all semantics but I think it’s important to question how and why we use language, especially identity-related language.
Reblogged this on Autismetanken and commented:
1. november er Autistic Speaking Day. Dette indlæg har jeg allerede delt på Facebook, men det skal også deles her, for det er i den grad værd at læse i forhold til at forstå, hvorfor ord er så pokkers vigtige. Autist, autistisk og autisme er ikke skældsord eller nedladende. Det er ikke noget at skamme sig over – det er ord, som vi skal tage tilbage og give ny styrke. Jeg er så enig med indlæggets forfatter.
Thank you for the reblog and for your support. 🙂
I agree with your points entirely. And although I do not have autism, nor do I have it in my family, I do have a good friend who’s son is autistic and I label him as such and she has never challenged me. I will say though, my daughter has Down syndrome and we would never call her a Downy. Going with the first point in your post, saying she is Everleigh and HAS Down syndrome, does that still imply that it’s something she could one day get rid of? Or does each community define how they want their syndrome/diagnosis labelled?
Also, I have never ever heard someone say “that’s so autistic” and heaven help them if I ever do. Society as a hole needs a good swift kick in the ass sometimes.
Identify-first or person-first language is definitely community specific.Thank you for bringing that up. I believe that person first language originated in the Down syndrome community as a way to combat the use of dehumanizing words like the r-word and its variations.
The “can’t get rid of it” logic is by far the most raised argument in favor of autistic over person-first language, but as you can other communities are in the “same boat” and have a different preference so I think it’s worth looking at other reasons why the choice of autistic feels right and how it can be empowering for those of us on the spectrum.
I think, perhaps, Autistic people prefer to be called autistic because, like the Deaf and Blind communities, our disability is very, very heavily a social-model disability in a lot of cases – we could easily develop our own culture and function quite well in a community set up for us, and to some degree, we have done so.
As an alternative explanation: I’ve noticed that a lot of whether a specific disability community prefers person- or identity-first language depends on how society responds to the specific disability and the disability’s history.
In the asthma community, for example, a lot of people, especially of the older people with asthma from when the stigma was stronger, prefer person-first language. This is because asthmatic used to be used as a limiting word – John can’t play hockey, he’s asthmatic. Hua shouldn’t join track, she’s asthmatic. People of my generation have the luxury of not really having to care too much about which word’s applied to us because of the great work done by those who’ve gone before.
By contrast, in the autistic community (distinct, IMO, from the parent-led “autism” community), “PERSON with autism” has often been used to imply that someone who’s visibly autistic isn’t a full person, and as an excuse to justify some horrible tortures. People reclaim autistic as a way of saying, “No, who I am isn’t bad, and it’s not okay for you to abuse me into compliance and ignore my needs in favor of your wants!”
Whatever the reason for choosing between one or the other, self-applied person-first and identity-first language both come from the same core place, though, from what I can tell. They both spring from a desire to defiantly assert the humanity of people with disabilities. Which way is best to achieve that end depends on the disability subculture in question and its history. As such, I will happily defer to the folks with the disability in question – they know better than I do what’s the best thing to call them.
Your second paragraph is exactly what I’ve been discussing with someone else privately and am trying to wrap my head around. Thank you for taking the time to give me the asthma example. It’s helping me better understand the use of language as a reaction to how society sees something.
I do think both types of language have the same goal, even if we’re coming at it from different angles as a result of our particular cultures and histories.
Brilliant comment. 🙂
It occurs to me (perhaps belatedly) that the two explanations I postulated are not necessarily mutually exclusive. Something for me to think on.
Also, yeah, I’m glad I have asthma experience – it’s interesting straddling two communities on either side of the person-first/identity-first divide. There’s also a movement among the more severe asthmatics to reclaim asthmatic as a self-described descriptor for those who have their asthma severely and substantially affect their lives to kind of combat the new stereotypes of asthma being blue-puffer-and-you’re-fine disease rather than something that can be truly disabling. Thus, in asthma community jargon, I was a severe asthmatic as a kid, I was a person with mild asthma as a teenager, and now as an adult, I am a person with moderately severe asthma/a moderately severe asthmatic (it’s split pretty much evenly between the two for people who fall in that severity category – and I really don’t care either way, personally).
I’ve been thinking about doing some writing about the wider disability community and intersectionality, so all of this really has my brain going in a bunch of directions. 🙂 It’s interesting how language circles around, with terms going from imposed by the medical establishment to rejected by those who want to humanize people with the condition to reclaimed by people with the condition themselves as a form of agency. I think this is (in part) what people mean by third wave, yeah?
Let’s be real for a minute. I’d never heard of “Down’s Syndrome” as a kid. It had a name previously attached to it but I won’t post it here. It was only changed because the word became a negative. Just as the long precession of words that describe people that are crippled, I mean handicapped, I mean handicapable, or special have constantly changed… they changed not because of the lack of mellifluousness of the syllables or that they were “slurs” to begin with, but because they become the slur of the emerging generation. And I predict the term Down’s Syndrome will follow the same path too. It’s human nature.
Oh, and while I’m at it… the reason why those with Down’s Syndrome don’t refer to each other as a “Downy” is that Dr. John Langdon Down’s name wasn’t Dr. John Langdon Assdown or Downsarse. We all know the popular mispronunciation of Aspergers, South Park did a whole episode on it, and “Aspie” is a far better term so as to avoid the whole mess to begin with. For that reason alone, I like autistic better. 🙂
It’s also referred to as Down syndrome. Not “Down’s”. John Langdon did not have it.
It was changed from “Mongolian Idiocy” as the Mongolian delegate pushed for the change.
http://downwitdat.blogspot.ca/2013/07/a-brief-history-of-down-syndrome-part-1.html
The self advocate Down syndrome community does not refer to each other as “Downy” or any other as they choose to use the person first. What they use twenty years from now will also be up to them.
DWD, Thanks for side stepping my points. The pronunciation for “Down’s Syndrome” and “Down Syndrome” would be the same. Thanks for taking issue with the way I wrote it… though I don’t see how that helped anything here. Did you miss my point about Aspie v Downy? It was pretty basic to pick up on.
If there is a preferred spelling used by a community, I think it’s respectful to use it. In the same way assbergers and other terms are offensive to the autistic community, misspellings of their respective conditions can be offensive to other communities.
I agree… my entry was simply a misspelling revealing my ignorance of the actual name. (I’d always thought that was what it was called.)
I have a cousin that I was very close to growing up. She didn’t have Downs Syndrome, but another issue that affected her speech and motor coordination (it wasn’t a recognized condition that I’m aware of, just the consequences of needing brain surgery as an infant) she didn’t learn to walk until she was 8 years old. I’m the last person that would willfully ridicule people that have such difficulties to face in life. My apologies for the misunderstanding.
Oops. Looks like I did it again.
Down Syndrome.
I’ll get it now.
🙂
I was actually not aware of the preference until really recently have to keep mentally correcting myself too.
The respectful response would be to accept the correction, instead of going into a huff. “Thanks for side stepping my points” sounds very sarcastic. I’m worried that this is your instinctive response, instead of acknowledging the correction from someone who’s intimately involved in the Down Syndrome community. Try to turn the tables and think about how you would feel if you corrected someone who talked about Assberger Syndrome and when you corrected them, they’d say “you’re ignoring my points and just focusing on my spelling!” You subsequent apology is alright, but think about your initial response for a minute.
autisticook, I understand your point. It’s part of the limitations of writing as a form of communication coupled with my abilities (or lack thereof) to write. All the nuances of a person get lost and it’s up to the reader to supply them. I could easily read all sorts of emotion in your response to me… and others you’ve left to me in the past, but how would that help things?
When you say, “The respectful response would be…” I find that the only person that I typically get such “respectful responses” from is that of the writer of this blog. She shows extraordinary courtesy to all, from what I’ve read. As for others, I feel constantly chided or ignored… which is fine. It’s the story of my life for not being able to conform, or when I do try and conform it looks like I spread cake frosting with a two by four. It just seems so out of place here.
Amanda brought up the “Downy” term first. I addressed it, and no one has had the decency to speak to the point… they just wanted to jump on me for my ham-handedness in written communication.
So, are you objecting to the term “aspie”? It seems that you are because of the term you made up to echo it, “Downy”. I also have trouble interpreting people in person and online [but at least online I do not feel as pressured as I would face to face]. I am 100% sure that I mess-up and do not write respectfully enough all of the time; it is not intended, especially in this community.
How funny, I was just thinking this exact same thing this morning. I have been diagnosed as ‘having’ Aspergers, but I don’t like saying ‘I have Asperger’s’ because it sounds like a disease and ‘I am an Aspergian’ just sounds too New Age-y!
So I tend to say I am autistic, I certainly think ‘I am autistic’ and with that thought comes a little inward skip of pleasure that I have come home to myself. But autism is perceived as being this dramatic, twitching, non-verbal thing and people look at me as if I am crazy when I say I am autistic. Plus the whole, British, don’t be dramatic/make a fuss thing!
MY conclusion? The non-autistic world is a pain in the ass (or arse as we Brits say). I think we just need to let people be who they be!
Great minds think alike! 🙂 I’ve tried out Aspergarian but it sounds odd.
People do react strongly to autistic but I think if we keep saying it, that will change in time. I also think that it’s important for people of all different presentations to use autistic so that the general public gets the idea that autistic doesn’t simply mean “Rain Man” or whatever monolithic stereotype they have in their head.
When you say ““Rain Man” or whatever monolithic stereotype” I just saw a movie with Bruce Willis that portrayed a boy with autism (or an autistic boy 🙂 ) called Mercury Rising. I think that to the average person, especially family members, if you don’t exhibit traits like these characters, you’re trying to pull their leg when you mention autism.
Yes, I’ve heard a lot of people say that.
Ah, “The Rain Man”. One of the few films that have affected me emotionally. I agree that many people’s view of autism is that it is exactly like the condition portrayed in the film.
I prefer not to say that I “have” Asperger Syndrome because it sounds like a disease. My first preference has been to say “I’m an Aspie”, and then if there is a lack of comprehension, I usually repeat myself by saying I’m Aspergic”. That’s nearly always understood. I don’t know if it’s a real word, but because it sounds more like “Asperger” than “Aspie does, it’s easier for NN folk to grasp. I notice I’m starting to use “Aspie” in Autistic circles, and “Aspergic” in NN circles.
I’m surprised people get Aspergic but I guess the similarity in pronunciation to Asperger’s would account for that. I tend to only use aspie writing and go with autistic or Asperger’s in face-to-face disclosure. Not sure why, but maybe because like you say aspie seems to be recognized more in the autism community that in the general populace.
This thread continues to interest me… It might be semantics but I wonder what the difference is between ‘with’ and ‘have’? I have long argued that I cannot say my son ‘has’ autism as ‘it’ is not something you can have. I’ve always been more comfortable with ‘with’ as that feels more ‘part of’ my son – though I think I’m only referring to writing here because verbally I’d just say that he ‘is autistic’. I can’t ask my son what he prefers because he isn’t verbal…
Perhaps a separate issue here is how to unite a disparate community (with such vastly different interests and needs) with a single word – the autism/Asperger’s/ASD issue? I can see that a single word could be powerful politically and help more effective lobbying, but it’s complex. How do you represent the spectrum nature of autism and counter unhelpful stereotypes? Whatever beliefs about autism people have, they rarely seem to match my son’s reality 🙂 Finding a common language which respects individual difference is possible but challenging…
Contrary to the people who say autistic people don’t understand metaphors, I sometimes like to say that we are all voyagers on the spectrum sea. Sometimes the waves overwhelm one of us and not the other, but we are all dealing with similar issues. And we all understand what it’s like. Landlubbers can express sympathy, and they can help us by offering a safe haven, but they don’t know what it’s like to constantly match yourself against the elements.
I feel more affinity with my non-verbal brothers and sisters than I do with most of the people around me. This is not to say that I don’t feel close to my non-autistic friends, because I do. But I don’t understand what they are going through, in the same way that they don’t instinctively understand me. That’s OK. We can communicate in ways that work for both parties, finding ways to understand each other. Not telling people that they have to communicate in someone else’s language to be understood. Communication always goes both ways. But I have to admit, it’s easier with other autistic people.
I love the spectrum sea image, x
I’ve seen discussions about “with” versus “has” and I’m not sure I see a substantial difference because I just mentally equate both with person first language in my head now. But some do seem to prefer one over the other.
There is a lot of politics around labeling in the autism community and some people use certain words as code for other things, which gets divisive. Personally I see strength in using a single term (autism/autistic) because that brings us all together under one umbrella and doesn’t equate a particular trait or set of traits with some people being better/worse or more/less autistic.
Perhaps some day your son will tell you if he has a preference, either through spoken communication or another means. In the mean time, it sounds like you’re taking a respectful, thoughtful approach to the topic. 🙂
Thank you 🙂 Reading your mail I’m wondering what those code words are that I don’t know so might use without understanding – but I guess that’s par for the course!
Oh, I didn’t mean to seem so mysterious. So for example, some people use aspie (or high-functioning autistic) as code for a superior type of autistic person rather than as a way to describe anyone with an Apserger’s diagnosis. It becomes a loaded word that used to divide autistic people into a kind of caste system. It’s not something you’d do by accident because the people doing it have a clear intent.
I’m trying to think of a similar use of speech. Hmmm . . . maybe similar to the way people will use a more generic term (like “people on welfare” or “immigrants”) to mean people of a certain race when it would be inappropriate to make an obvious racial reference.
Ah! got it! Thanks.
Just a very few years ago we wanted to know why our sons were like they were. I’d looked around at other kids and saw that they did not fit in. So it was not until I was 45 that I discovered why my sons and I were such odd-balls. I am now almost 48.
I tell people that I am on the Spectrum. That is as far as I have gotten. When I say I am autistic people don’t believe me. Autistic people aren’t supposed to fit as well into society as I do. The funny thing is that the same people have commented on my rudeness (unintended) and little quirks. But I am not “Rain Man” so I can’t be autistic.
My oldest has a definite diagnosis – finally. He could care less what he is defined as as long as he gets to do what he loves most.
I often use on the spectrum to vary my writing because it feels more neutral than “with autism”. I know what you mean about the “you can’t be autistic but you sure are weird” conundrum. 🙂 I wonder if the generation of kids who are growing up with autistic peers will be the ones to finally shed the stereotypes.
I always love your posts and felt this one again. I often use “Aspie” and “Autistic” interchangeably simply because I was diagnosed when Aspergers was still a professional label. You are right…esp family finds it insulting to say yet we don’t mind it:) I don’t think general belief is at the point yet that we actually LIKE who we are on the spectrum and while some aspects are tough, our identity is something we are proud of and makes us US:) Your posts always hit home to me because you have the language to express that. I often send your links out to family and friends.
Thank you again for making me feel like I belong.
I still use aspie a fair amount because that’s my diagnosis. See also: blog name. 🙂
I think that autistic pride makes some people uncomfortable, which I find odd. It’s almost as if they feel sorry for us that we’re proud to be who we are? I don’t get it.
Thank you for the kind words too. It means a lot to me when some likes a piece enough to share it with family and friends.
Well, from what I’ve heard, they (the powers that be) have taken away (or are trying to take away) the term Asperger’s so we might as well embrace the current terminology. Since most people still know “Asperger’s” and that it’s a shortcut in getting a point across, that’s what I use. I’ve personally never known ‘autistic’ to be used as a common slur, though I can see how it could be (anything that is less than optimal can be used in the negative). My apprehension with labeling myself as ‘autistic’ is that it doesn’t match the working definition that the vast majority of people have for the word.
In my world, words are for communicating thoughts from one person to another, and to change words and meanings (even if it’s to make things more accurate or specific) only lends to confusion (was it really necessary to change Brontosaurus to Apatosaurus?) We still say “dialing a number” though dials have long since ceased to exist on phones.
Still, just like when YouTube abruptly changes the format, I just go with the flow, and I’ll be fine with eliminating the term Asperger’s and Aspie, though I tend to favor the latter.
As for Linguistic Reclamation I think it’s a good idea. There is nothing better than taking the negative power away from those that would use it. One example, that you may be aware of, is the word Mormon. I’ve worked for several Mormon families and learned that the term “Mormon” was originally a slur along the same lines as the “N” word. They embraced the word several generations ago and it now has next to no negative connotations linked to it.
Yes, Asperger’s is no longer being given as a diagnosis, but people who have the AS diagnosis are “allowed” to refer to it as such. Technically though, anyone with an AS diagnosis is automatically considered be autistic under the DSM-5 guidelines.
I get what you mean about the working definition not matching the word, but I think the only way to change is that for some of us who don’t fit the stereotype to stand up and say, this is what autistic looks like too. Otherwise, how will people know?
I was surprised in researching reclamation to see that terms like Quaker, Mormon and even Christian are considered reclaimed words.
Technically this is correct in the US and other countries that use primarily the DSM guidelines. Currently in the UK, and presumably in some other countries as well, the guidelines used for diagnosis are that of the WHO ICD-10. The diagnosis I received, based on ICD-10, is ‘on the autism spectrum – of the Asperger type’. (I tend to use the expressions ‘aspie’ and ‘on the autism spectrum’.)
You mentioned in passing in your post that ‘autism community’ is different from the ‘Autistic community’. Can you elaborate in which ways? Do you mean the former is larger and also encompass families, friends, carers, atc. of autistics? That’s not a difference I had heard about before or thought about.
Yes, you’re right, I should have qualified this as being according to the DSM. Asperger’s is still a diagnosis in the current ICD.
By autistic community I meant people on the spectrum, whereas autism community encompasses the autistic community plus families and other allies. It can be an important difference because sometimes what the majority of the autism community wants is not at all aligned with what the autistic community wants.
Reblogged this on Walkin' on the edge and commented:
In the immortal words of Cartman from Southpark – I will “respect your authoritay”
Thank you for the reblog. 🙂
I started out saying that I “have Aspergers”, and indeed the name of my blog is “Married, With Aspergers”. But over time I have shifted to describing myself as autistic. I am quite open about this aspect of myself and I have found that among the people I mix with socially there is a better understanding of autism than is generally the case: I like to think some of this is because they know me and can think beyond the usual stereotypes.
I’ve made a similar shift as I’ve grown more comfortable with the language and learned more about identity, etc. And yeah, I bet you are influencing how the people around you see autism thanks to their association with you and your openness.
I sort of see it as my “duty” to change people’s preconceptions by calling myself autistic. I chose the name autisticook before I had any diagnosis, for that reason. Autism is a spectrum, and no two people will present the same. Same as no two neurotypical people present the same. We’re all different. (“I’m not!” – sorry, gratuitous Life of Brian quote). But I want to show the world that what they think of when they hear autism doesn’t fit me, and yet I am autistic, so maybe that’s not because I’m not autistic, but because their ideas are wrong.
I feel this way too, but I get that not everyone does (or can, due to personal constraints on being out). I think outing myself was one of the hardest things I’ve done but it’s been worth it and so far quite positive.
I’ve only really had two weeks of doing this, to be honest. I’ve mostly had supportive comments because I’m so exuberant about it myself. Where I get “Congrats… I guess?” and I say “YES!” So it’s all a bit hesitant. The people who don’t agree simply don’t respond at all.
Yeah, people often seem a bit confused by it but we need to lead by enthusiastic example. 🙂
All bouncy and flappy, me!
My son calls himself an Aspie. Before DX he called himself an alien. Either way he knows he is navigating a world not his own. I think calling yourself autistic is no different from identifying yourself as Irish or African or Martian. It means you embrace the different way you see the world and that your culture isn’t always like the one you are living in. I think the big message for my son is that he is not disabled or ill. His is a communication difference. He tries hard to learn the language of NTs, but doesn’t get many people speaking Aspie back or even acknowledging that they understand any.
Alien is a surprisingly common first label that many of us give ourselves. It’s awesome that you get the cultural aspect of the label because I think a lot of family members miss that part of it. 🙂
!!! I called myself an alien as a kid!
I used to think up these hugely outlandish possible explanations – maybe I’m secretly an X-men mutant whose mutant ability is super-focus and pattern recognition, but it comes at the cost of not picking up on social stuff well, maybe I’m an alien put on earth to observe humanity, maybe I’m a changeling, maybe I’m this or maybe I’m that…. None of it, I really believed, but it was better than any other explanation I had at hand and provided some comfort at the time.
Funny how people will settle on similar explanations for the same phenomena, eh?
I find it hard to label anything especially myself. I just am me, that’s all 🙂 I used to describe as weird, nerdy, bookish, shy etc. but none quite fit completely. Plus I didn’t want to be “weird”. Aspie is now “popular” which I think gives people a clearer picture of what it is. But then it might seem like a fad. So I feel like I should say “well I was an aspie before it was cool!” I’ve always felt really that I might be autistic since I was a kid but I was discouraged of vocalizing it, since I was passing so well (yea, right!). So I’d basically be told you are not. Which made it seem like a big shame. So while in my head I identify as autistic, outwardly I say aspie which I consider a more neutral term I guess, does that make sense?
Sophie who is on the severe end of the spectrum is autistic, clearly 🙂 she doesn’t “have it” she “is it”.
Yes, I get what you mean about using aspie because of people’s perceptions of aspie versus autistic. When I was first diagnosed, I was much more comfortable with aspie and found autistic confusing because I had some biases about what being autistic meant. It’s taken time to become comfortable with autistic and with saying it out loud. Interestingly, both my daughter and husband now openly out me as autistic all the time to their friends, which is nice because they don’t see any stigma in it.
Dear Musings, if there is a Nobel Prize for tact and intelligence in comments, you need to clear some shelf space. I respect the dignity you and your readers wish to give to other people. My son has Tourette’s syndrome and I struggle with how to phrase it–it don’t like the medical feel of “has.” TS is neurological and just as much a part of T. as autism. I’d like to call him a Touretter and use the “with” as Ben does. Selecting a language for yourself is empowering. This is a wonderful dialogue and I have learned a great deal. Thank you for hosting this lovely discussion.
Lori
Oh, Lori, thank you. I really want this to be a place where we can have open honest discussions in a civil way and I love how much thought and passion everyone puts into commenting. I’m constantly learning from the comments on posts.
Touretter is a great word! Maybe you could start a trend. 🙂 Also, I don’t know if I told you at the time that you posted it but your story about T advocating for himself in the store with the checkout lady made me tear up. What a terrific mom you are.
I’ve only recently started using the word “autistic” to describe myself… & I haven’t disclosed to anyone in meatspace beyond those who’ve asked me explicitly (… who are more numerous than I’d think if I wasn’t autistic). I will once I get a formal diagnosis, but until then… I’ve had enough friction with my family over it that I want the backing of a formal diagnosis before I bring it up with them again.
On one hand, I’ve got some internalized issues of the you-don’t-have-anything-wrong-that-trying-harder-and-self-discipline-won’t-cure variety, so some days, I’m not fully comfortable with claiming the word for myself (Nov 1 was one of those days – so much that I almost scrapped the post I had planned cuz I’m Not Really Autistic so aren’t I appropriating?). On the other hand, the word autistic has explained so much… honestly, I don’t know where I’d be now if I hadn’t gone back and considered maybe my parents were wrong, maybe I really am autistic. Worse off, mentally and physically, for certain.
Not sure what I’m trying to say here. I totally get autistic as a reclaimed word, and I approve. On the other hand, sometimes, if you’ve been subject to a lot of gaslighting over it and/or if your diagnosis isn’t official/certain/whatever, sometimes claiming it for yourself can feel appropriative. Even if it’s not, and even intellectually, you know it’s not. Emotions aren’t always the most rational things.
I keep forgetting that you don’t have a diagnosis yet. To me, you’re just as autistic as I am.
Thanks! Sometimes, I need to hear that. 🙂
I need to save up $$ for it. Once I have half of the cost of diagnosis in the bank, I’ll see about a referral. Unfortunately, emergency expenses keep popping up…
I totally get that. In the time between realizing I was very probably on the spectrum and getting diagnosed, I felt very sheepish about self-identifying as anything other than questioning. A diagnosis can create a foundation for disclosure because it feels like in the worst case I could be all “look at m paperwork” which is silly but . . . you know.
It makes me sad that you feel like it may be appropriative to apply autistic to yourself because you’ve had a bunch of bad breaks and been denied the opportunity to be diagnosed so far. Sorry you’ve been struggling with it so much. 😦
It’s more… what if I’m not?
Even though I’m almost certain I am. I’m sure you and most other adult-diagnosed people get what I’m getting at.
And, yeah, “Look at my paperwork” is exactly why I want a formal diagnosis before disclosure! Silly, but… I need the security of a backup plan.
I was terrified of “what if I’m not?” right up until I got my verbal diagnosis and even then I walked out of the office and was kind of secretly worrying that maybe I’d misunderstood. When I finally saw in writing, it felt unquestionably real. One of the worst periods of anxiety I ever had was between making my appt and getting my diagnosis weeks later because I just keep thinking what if I made a huge mistake? So yes, I know exactly what you’re feeling here.
My daughter is quite clear that what she is like is closer to Autism than what I am like, which is closer to Aspergers. To both of us, they don’t seem like the same thing. They don’t seem like they should even be on the same “spectrum”. Mine is more mental, social awkwardness, and kind of book smart but not street smart or common sense smart. hers has a lot of physical and sensory components, including light, the need for stimming, rocking, swinging, and shutting out the world, temperature needs to be about 85 before she doesn’t feel cold, face blindness…. I am convinced that what we now call one syndrome will someday be recognized as an adaptation to a variety of issues and alterations in function, that what we see are the symptoms, not the actual base. Like when we see a fever, there could be a lot of things that cause that. And also like that in that treating the obvious symptom is unlikely to heal much, although it may make someone more externally functional. . Anyway, I call her Spectrummy, which works for her, when I call her anything.
I think there is a difference in what people perceive Aspergers to be and what the actual diagnostic criteria for Aspergers is. The only clinical difference between AS and autism was the presence or absence of delayed speech. However, a few popular researchers have made a case for more significant differences between the two and I think that’s led to the idea that they are very different.
From what you describe, you might want to take a look at Broader Autism Phenotype with respect to yourself. BAP is a subclinical form of ASD that is focused more on the social aspects, whereas the sensory, stimming, etc that you describe in your daughter is definitely more close to autism. (Apologies if I’m stepping on your diagnosis – I’m not sure from what you describe if you’re diagnosed or exploring options, etc. so I thought I would throw out one more possibility.)
I agree that autism is a functional/neurological difference and a lot of our “symptoms” are in fact attempts to cope with that difference in a world that isn’t designed to accommodate it.
Reblogged this on humanitysdarkerside and commented:
What are my thoughts on reclaiming the word autistic?
Thank you for the reblog!
I strongly believe in and support everything you’re saying about reclaimed words and “autistic”, however I was really surprised by this statement: “Most adults on the spectrum prefer to be called autistic, rather than a person with autism or a person who has autism”.
Are there figures or a survey/research you’re basing that on? Do you mean it’s the preference only when they’re offered those two choices “autistic” vs “with autism”, or the preference over all other descriptive words?
My experiences of in person support groups and of online forums, Facebook pages etc (rather than at Autscape and in the Autistic blogging community), has been that the preference was mainly towards “Aspie”, “have Asperger’s”, “with Asperger’s”, “have AS”, “have HFA”, “have high functioning autism”, “on the spectrum”, “on the autism spectrum” etc and possibly “have a type of autism”. More recently I’ve seen a lot more of “have ASD”.
I’ve generally felt out of place and having to defend myself for using “autistic” in those sorts of spaces, and felt a lot more comfortable in the few places I’d call Autistic community, like Autscape or the blogs I follow. This said, things do seem to have shifted a bit with the DSM-5 and I see a lot less of the previously common “Asperger’s and autism are totally different things”, and my local support group has changed its name to Autistic Nottingham (from Asperger’s Self Help), even though my observation is still that possible the majority of the people attending wouldn’t necessarily prefer to use the word ‘autistic’ as their self description.
It would be interesting to have a genuine survey of all the adults of the autistic spectrum to find out what the majority preference (if anything) actually is …unless there already has been one that I’m not aware of? And if there’s been one before the DSM-5 proposals were first announced, how things have shifted since.
But yes, not to be derailing of the rest of the post, which I really liked and do totally agree with and support. ‘Autistic’ is used increasingly as a slur or just as a descriptor with negative connotations – this was in the press just this week http://cifwatch.com/2013/11/03/guardian-columnist-compares-israel-to-an-autistic-child/ – and reclamation is important.
Totally unscientific, but a recent survey on Tumblr had 230 notes on the identity-first preference post (http://purplewowies.tumblr.com/post/65417511234/if-you-are-autistic-reblog-or-like-if-you-use) and 2 notes on the person-first preference post (http://purplewowies.tumblr.com/post/65417511236/if-you-have-autism-and-you-prefer-person-first).
Also, the notes on this have additional commentary: http://purplewowies.tumblr.com/post/65441909506/91-to-1
I was specifically referring to the autistic/with autism dynamic, and not accounting for Asperger’s because I feel like it’s a slightly different issue,. The autistic/with autism choice is a source of controversy (also a code for “which side you’re on” in some circles) and autistic is becoming an increasingly popular slur, so I wanted to address that. The comments here have a lot of good discussion about the use of aspie/Aspergers and why some people favor that over autistic and I totally get that. I think we each need to go with what is comfortable. I also wanted to open this up to discussion, because it wasn’t something I gave much thought to when I was first diagnosed but it’s become increasingly important to me as I’ve gotten more involved in advocacy.
I hope that DSM-5 will help us shift toward a habit of thinking of ourselves as one big group. I think that would do a lot to reduce the stereotypes around autism/autistic and create a more embracing rather than divisive way of looking at the spectrum.
Thank you for talking about this topic. After reading several articles and talking to a few people with autism, I’ve concluded that I’m going to use both terms on my blog (autistic, and person with autism). My reasoning is that I find autistics on both sides of the debate. Second, I feel that using the terms interchangeably will take the stigma out of both uses of the term.
I’m glad you spent some time reading more about this. When I write for a general audience I tend to alternate terms to be more inclusive so I get what you’re saying.
When I speak about the illustrator of my book, Karl Gabriel, I say ‘diagnosed with Autism’. Or, if on twitter when I am limited by characters, I say ‘7 yo boy with Autism’. I do this because they are the words his mother prefers that I use. When talking about her son I am always very careful of being respectful of her wishes.
Like any community the Autistic one is diverse. And you have many (children) who are Autistic who are being represented by NT parents and adults. It’s great to hear the point of view of an Autistic adult! All in all I believe using whichever word the individual prefers is the most respectful thing to do. Thanks for writing this terrific article and helping me to understand another point of view.
I agree that it’s important to respect individual preference and always try my best to do so. We are definitely a diverse group with varying preferences.
As a side note, I think it’s important not to confuse or conflate what the parent of an autistic child wants with what the child him or herself wants. This kind of question might be too esoteric for a young child to have an opinion on, but there are many other things that aren’t.
Reblogged this on life in the slow lane and commented:
A thoughtful read and holds true. Thank you Musings of an Aspie.
Thank you for the reblog! 🙂
Autistic should be a positive word. It’s definition carries inherent negativity.
I wholeheartedly agree!
I don’t usually call myself word autistic, since my official diagnosis is Asperger’s Syndrome. I think it is part of the spectrum, so I do consider myself autistic, but I’d say “I have Asperger’s Syndrome” for the sake of specificity. I agree that that makes it sound something like a separate entity, which it really isn’t, but unfortunately there’s not really an adjective for it (unless maybe you said, “I’m Aspergian”, but then nobody would know what you were talking about). I think descriptors like “autistic” are fine, but I might object to calling someone “an autistic”. That does seem to suggest defining the person by the condition. Saying “has autism” makes it sound like it’s something separate from us, but saying “is an autistic” makes it sound like it’s our entire identity. I don’t object to saying “an aspie”, but that’s because it’s mostly just what we call ourselves. It would be different if a neurotypical person said something like “Oh, don’t mind him, he’s an aspie” as if that was all there was to say.
I hadn’t thought about the difference between “an aspie” which sounds fine and “an autistic” which sounds . . . not fine. I guess it’s what we’ve become used to that sets the tone to some degree. And that last sentence, yes, that would come across as really dismissive. If my husband says something I did was really autistic (or jokingly says “are you autistic?” in response to something I’ve done) it’s cute and comes across as affectionate but if any else–other than my daughter–did that I’d be annoyed.
Thank you for including your post in the T-21 Blog Hop!
Thank you for hosting it! 🙂
Linguistic reclamation is exactly why I treat each of these terms as identical, even if others may not. If I don’t treat a term as a pejorative term for myself, or if I even use the term as a self-descriptor, it loses its power over me as a derogatory term. There is nothing about the words “autistic” or “autism” that I’m ashamed of, and they both serve important linguistic roles in explaining my neurology. I’m also making an attempt to include “Aspie” in this list now, even though I had described myself as “having Asperger’s” ever since I was diagnosed, and that’s still my default self-descriptor.
I do something similar with terms related to species identity, but there are subtle differences in what the descriptors mean, so I’m more selective about which one I’ll use to describe someone. Usually, these differences come from existing terms excluding people who have very similar experiences, but don’t completely fit the existing definitions. However, I still won’t censor a term entirely, because I don’t want to see any of these useful descriptors become perceived as derogatory.
I suppose it’s inevitable that I’ll run into people who will ask me not to use one of these terms, either to describe myself or to describe others. I get the same thing from some other people who have a strong non-human species identity. I find accommodating these kinds of requests to be a disruption in the reclamation process, so I will generally politely decline. I can’t force them to accept these descriptors, but I can tell them my reasoning for using the terms they dislike, and I can ask them to reconsider their position accordingly. Usually the results are positive, but I’ve encountered a couple rare cases where I ended up burning bridges with someone over it. Even so, I don’t regret my decision, because it’s really for the best.
Honestly, I don’t think I could censor myself that way. Different people have different terms they don’t like, and I’m not good enough at remembering each person’s “problem words” to be able to comply with their request for longer than the single conversation they brought it up in. Apparently, people don’t like that sort of thing, so I’d rather not force myself into that social trap.
I know I am late to this party, but i read a few mums forums and always get wound up by the parents pussy footing around the word, using meanlingless phrases like “a person with autism”. I am not “with” it is who i am. I always want to say exactly what you said. So glad not to be alone.