27 April 2012

The Problems with "Asperger's"

One of the most common questions I have ever heard or read online is, "Are Asperger's and autism the same thing?" Of course, there are nearly infinite iterations of this question, asking what the "differences" are between Asperger's and autism, and whether Asperger's is a subset of autism versus a mild form of it, or unrelated entirely. (There is not a general, broad-based consensus on the answers to these questions.)

The only current diagnostic difference between receiving a diagnosis of Asperger disorder or Autistic disorder is that in order to be diagnosed with Asperger disorder, an individual must have "no clinically significant general delay in language."1 There is no other difference in diagnostic criteria, but that one difference that does exist is not only negligible but scientifically invalid and nonsensical. (This, of course, does not consider the very viable argument that autism should not in fact be included in the DSM, which is a manual of psychiatric disorders according to its own title, as autism is not a psychiatric disorder but a developmental disability.)

If all Autistic people have innate differences in communication and social interaction -- primarily with expressive language rather than receptive language -- then it does not matter at what age the Autistic person develops actual speech. All Autistic people will have neurologically divergent communicative abilities, whether for informative or social purposes, throughout the life span. Besides, it is acknowledged in nearly every publication discussing "Asperger's" that people who receive that diagnosis have communication and social problems throughout their lives resulting from their information processing differences.

Attempting to create an artificial divide between people who are "just Asperger's" and "actually Autistic" not only contributes to divisiveness and disunity among the Autistic community, but also does us a disservice by communicating false ideas to the world beyond our own community. As an Autistic friend of mine recently observed in a note on Facebook, the proud use of terms like Aspie and Aspergian is frequently associated with the so-called Aspie supremacists -- those who believe that they are genetically or otherwise superior to non-Autistics on the basis of the Asperger's diagnosis. (Some of the same endorse the rather absurd neanderthal theory of autism, that Autistics have more neanderthal genes than non-Autistics. Others buy into the inaccurate and harmful high and low functioning dichotomy.

The friend who authored the note encouraged Autistic adults and allies to avoid using the "Asperger's" terminology except when discussing the specific diagnostic label or its history. I agree with him.

Earlier today, I was interviewed at the Autism Women's Network weekly radio show along with three other people, one of whom repeatedly used the term Aspie and described some Autistics as from "the higher-functioning end of the spectrum" (though she did later question the validity of this false dichotomy.) I frequently read writings or postings from other Autistic adults in the community who prefer to describe themselves as Asperger's, Asperger autistic, Aspies, Aspergians or Aspergerians, or "mildly autistic." (When I was first diagnosed, my parents explained the diagnosis as "a mild form of autism." This is apparently common.)

These terms reinforce several false and dangerous notions:

1.) They reinforce the stereotype of autism rights or neurodiversity activists and advocates as Aspie supremacists. Most of us are not Aspie supremacists. We seek equity -- that is, equal access and opportunity as our non-Autistic peers across the lifespan in all facets of life -- acceptance, and respect, but not a new order with Autistics ruling over the poor non-Autistics.

2.) They serve to alienate those of us who do not use that kind of terminology, and those who have never received the "Asperger's" diagnosis, by separating one group of Autistics from another.

3.) They support the idea that some Autistics are fine as they are while others should be cured or fixed, by suggesting that it is okay to be Aspie or Asperger's while allowing for "autism" alone to be a negative, devastating experience. This creates a false distinction between "types" of autism. Some Autistics may be more disabled or more visibly disabled than other Autistics, but there are not different "types" of autism or Autistics outside other conventional types of diversity and individual experiences.

4.) They deny the disability experience of autism by creating connotations that align with the Aspie supremacist notion of "Asperger's autism." While the social model of disability is generally constructivist, it is extremely dangerous to deny that Autistics experience disability, including those who may be more mildly or invisibly disabled or able to "pass."

Asperger's is a term that carries far more baggage than it should, and until we can academically and objectively dissect its use and history, continued emphasis on this label and its associated labels will only harm the community. This is why I cringe when I hear people use the terms "Aspie" and "Asperger's," because every time someone insists on these types of terminology, that person emphasizes and reinforces some very dangerous ideas.

We are at a point where our community needs to foster as much unity and solidarity as possible, and one of the ways in which we can do this is through the language we use to refer to ourselves both within and outside the community. I do now and always have supported the right of individuals to determine what they wish to be called and how they wish to refer to themselves when using identifiers, but I urge those members of the community who are reluctant or less frequent to identify themselves as Autistic to consider the ramifications of this single, unifying identity label.

Using Autistic is a symbol of solidarity with all other Autistic people, because it emphasizes our similarities down to our very neurological wiring rather than calling attention to superficial or socially constructed differences in our apparent abilities. It makes it harder for those opposed to neurodiversity to draw on the high-low functioning dichotomy or the differences in criteria for diagnostic labels, because the word "Autistic" is all-encompassing. Autistic refers to any individual whose neurology is divergent from the typical range of variability enough to cause core characteristics of autism in information processing differences. It pays no attention to specific abilities and challenges, as these vary in every group of people. It pays no attention to specific diagnostic labels, because labels themselves are a social construction as essentially invalid as monetary value.

Autistic is an identity label that reclaims the notion that it is okay to be Autistic in any form, with any diagnostic label, with any manner of visibility of disability, with any severity of disability -- and that we are of equal value and significance as Autistics both individually and as part of the community.


--
1American Psychiatric Association. (2000). "299.80 - Asperger disorder" Diagnostic and statistical manual of mental disorders (4th ed., text rev.).

39 comments:

  1. This is a really timely post for me. I was officially diagnosed (Autistic Spectrum Disorder (Asperger's Syndrome)) at the beginning of this year, and for the first couple of months I didn't use the term autistic in reference to myself, at all. I don't think I could rationally justify it at all - I just had a really instinctive deep feeling of opposition to it. I can only conclude that I had internalised a lot of what you talk about here.

    Anyway, I read a lot and I talked to people, both online and in person, and suddenly I realised I was describing myself as autistic. I haven't entirely given up the 'Aspie' label in all contexts, but I'm thinking about my experiences in the queer community (where I have much more experience) and those gay people who emphasise their monogamy and their gender conformity above all else, and it's not hard for me to see why this is important.

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  2. I have heard professionals say that the term Aspergers was created to help some people feel more comfortable with their A.S.D. diagnosis... I wonder if that's true?
    A.S.D. does not belong in the DSM I've been saying this for an age!
    Thanks for this post!

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    1. I doubt it. As far as I understand it, Hans Asperger had is band of 'little professors' before 1938.. leo kanner didn't start diagnosing children with autism until 1943, independent of Hans. At the end of the day we should probably ditch both autism and aspergers and go for PDD. :)

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    2. I like PSD, I have AS,I am now evolving or totally alleviated of negative AS traits and have modified positive ones. I despise the new name change of ASD, it makes people like me feel extinct.

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    3. I don't consider myself to be disordered in any way-I am Autistic even though orifginally diagnosed aspergers now defunct under DSM-V-I wholeheartedly agree with Autistic Hoya-who by the way is not disordered either

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  3. This is outstanding, thank you. Too many people see Asperger's as being "the good kind" of autistic, and those who set themselves above other autistics tend do very little to help the families most in need of support. When I see someone who is non-verbal having a meltdown, I understand. That similarity is more important than all the differences.

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  4. Thanks for explaining this to me. I had thought it would be inappropriate and offensive to those with autism diagnoses for me to refer to myself as autistic when I have an Asperger's diagnosis. I didn't realize there was a perceived connotation of superiority to the "Aspie" label. Thanks for cluing me in. I'll change my self-identification label accordingly.

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  5. Funny you should write this. Early on when my son was diagnosed, we referred to him as having Aspergers. I do as well. After we moved to an area where the term is so much less stigmatizing and I felt less like we were under attack because my son needed help because of his wiring, I started referring to both of us as "Autistics". And it was in my mind solidarity. I guess what I am trying to say is that sadly, the use of Aspergers is sometimes less stigmatizing. I actually read recently a woman making statements about what her perception of Autism was that were beyond insulting.

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  6. The 'aspie supremacy' stuff is one of the reasons I shy away from using the term (that, and as you point out there isn't really any meaningful difference). That's not a mindset I want to associate myself with. And as a person who wants to see everyone accepted for who they are, I'd rather use the broader term--to do otherwise on the basis of wanting to separate myself from those with greater issues is hypocritical, IMHO. It might help my self-esteem in some small way, but it would go against my core beliefs.

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  7. slightly off the topic, i am an addictionist. for full disclosure i do not suffer from any form of that disease as many in my field do. in my field there is a lot of controversy over the use of labels. i do not advocate using terms like "addict" or "alcoholic". i argue that the terms define the person as the disease, which i believe is wrong. it promotes a stigmatization as i believe the term "diabetic" does as well. so along the same logic i describe people as having autism rather than being autistic. the disease, illness, or condition a person has does not define who they are.

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    1. My diabetes is not who I am - it is an illness of my pancreas that was layered over my core identity. While diabetes affects much of my life, it does not affect everything. When I am not doing things like eating, exercising, or adjusting my insulin bolus ratio I am able to completely forget that I have diabetes.

      My autism *is* who I am - it is a fundamental difference in my brain from the mainstream type of brain and this difference has been present since birth. My brain is the seat of my identity -- it is through my brain that I think, observe, process, dream, interact, communicate -- everything I do or am originates in my brain.

      My brain is always autistic -- there is no part of my life that is not colored by my having an autistic brain. My autism is completely inseparable from who I am. I am autistic.

      To say I "have autism" is not offensive to me: I also "have hazel eyes" although I am equally accurately a hazel-eyed person. The problem comes with the intent. You admit that you choose to say that I have autism rather than saying that I am autistic because you have a negative view of autism and feel you are doing me a service by trying to perform a verbal surgery that will separate me from my brain.

      What you do not understand is that your attitude toward autism is part of what is *creating* the stigmatization that you believe you are combatting.

      It is my guess that you would never dream of calling me "a person who has femaleness." Why not? Isn't there a social stigma to femaleness? Don't scores of feminists fight against that stigma every day? Why would I want to be identified as being my gender when it promotes that stigma? My gender does not define who I am! Why should I be forced to carry a label that defines me by the condition that has caused me to suffer?

      Answer: because I *am* female. I *am* a woman. And while certain stigmas and suffering come from that, my gender/sex *is* part of my core identity and I prefe (as, apparently do most women) to identify with my gender and work, where I can, to lessen the stigma and suffering that can come with it.

      When people insist on verbal acrobatics, trying to separate me from my autistic brain, it feels as clumsy and ridiculous to me as if someone were insisting on referring to me as a "person living with femaleness." Please understand that this *is* who I am. I am autistic. If you do not like the suffering or the stigma, I would ask that you work (with me) to help create a world in which autistic people are more understood and more accepted. Thank you.

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    2. I am autistic, and I have diabetes. You do not have a clue about either. In the real world, I suggest you reconsider all of the nonsense that you have spewed here. I would kill my sister to remove diabetes from my life, especially as it makes the simple act of sitting still a challenge a lot of the time. If you expect me to call myself a person with autism, be fair about it and go into places like Harlem, and tell some of the residents you find there that they have to call themselves people with blackness. And stay the hell away from people who want a better world for ALL kinds of people, not just the politically correct, in future. Thank you.

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    3. Hi doc,
      Addictionologists are some of my favorite people. You're foremost people to me, but your studies, knowledge and feelings make you an addictionologist. It doesn't mean I respect you less. (kidding)
      I'm an Autistic person and I'm an Alcoholic. Now, I've not drank in near 15 years. The words, in both cases for me, have more to with how I think and the sense of community they provide. I belong.
      While I'd never want to refer to someone as say, "The Amputee in room 403," I did date a double amputee, and he often refered to himself as, "Supercrip." I know it sounds morbid, and horribly politically incorrect, but I feel these things are not outside labels in such cases. Rather, they are about a person taking honest stock in themselves, seeing that they are far from alone, and using the connections they have to others, precisely because of their/our differences, as tools to connect to other human beings.
      In short if the terms are stated by the person who has them, and with self esteem, I think they are incredibly beautiful. If they're given by judgement, and as a put down or, stereotype, of course it's a mistake.
      Keep doing what you do. We need you!

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  8. It's not respectful to tell autistic people how to refer to themselves. This argument has been already been discussed at length on this blog and others, e.g.:

    http://autistichoya.blogspot.com/2011/08/significance-of-semantics-person-first.html

    Person-first language is a good idea for other disabilities, but not for autism; please respect the consensus of this community.

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  9. I think this is an important discussion to be having; not only among autistics ourselves, but among those who view us with those labels. My son was given the Asperger label, which most of his teachers took to mean "a mild case of autism." I think this is why they were so shocked and surprised to see how his meltdowns involved violent aggressive behavior... after all, how could he behave in such a way if he was just "a mild case?"

    I feel like I shoulder the same burden as my son, being seen as just "mildly autistic," when I'm still recovering (and does it ever feel like recovering) from a huge meltdown this weekend that leaves me fearing if my partner sees me as a ticking time bomb ready to explode. How could possibly melt down in such a way if my autism is just "mild?"

    It's the same thing when people equate what they see with what they believe must be. A video of a "severely autistic" child on the playground looks just like my "mildly autistic" child. Yet their labels cause people to believe that one child's behavior is OK because it's "acceptable" under their label, but that my child's behavior is strange because his is "mild."

    I don't think this essay is trying to tell people how they should label themselves, I think that's all or none thinking. I think it's a good representation of how autism affects all autistics and how advocacy would be better for all of us when we join together in what unites us, not what divides us. That being said, I don't think one's personal usage of Aspie is that offensive, so long as it is being used in a way that gives meaning to that person and is not a way of attempting to separate themselves from "those other autistic people."

    At the same time, I wrestle with wanting to claim "Asperger's" as a label because I feel like a lot of people with that diagnosis can suffer a double whammy of exclusion... such as we're supposedly not autistic enough to claim ourselves autistic or NT people expect so much more of us because we're "just" Asperger's. So I do feel some solidarity in that but I am also hearing what the essay is saying. These are certainly things worth thinking about.

    - Hanne

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  10. I have met quite a few parents of children whose autism handicaps them in much more visibly profound ways than my daughters ( they don't speak, are not toilet trained, appear to have limited receptive language OR limited ability to demonstrate their understanding of spoken language... ) These parents correct ME when I refer to my daughter as autistic because she does speak fluently, has a high IQ, is in a mainstreamed class etc... They seem to resent her inclusion under their umbrella - as if seeing her called the same thing somehow either diminishes the validity of THEIR struggles, or takes attention and funding and resources directly from them. They were the ones to insist on ASPIE vs AUTISTIC in conversation. It is not always those diagnosed with Aspergers or their families creating the gulf.

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  11. I find this discussion very disturbing because it is the first time I have come across any talk of Aspie Supremacists and such-like.
    I describe myself as an Aspie, or having Asperger's without any underlying reason only that that was what I was diagnosed with!

    What I find particularly disturbing is the idea that what terms I use are being used to judge what I think about things I have no concern with.

    I have a personal hate for anyone who tells me what I am thinking for they are almost inevitably wrong.

    This whole piece is about doing exactly that.

    The quote from Einstein is the only response I will make!

    So please do not make assumptions about me from the words I use, the way I use them or the way I stand!

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    1. John,

      This post is in part a response to your comment -- http://autistichoya.blogspot.com/2012/05/on-language.html

      Please take a look; thanks.

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    2. Thank you Lydia, I have just come across this old encounter, for want of a better word, and I cannot remember whether I saw it before and followed your link.
      I have done so and have now much more experience of these issues as I was only diagnosed 2010.
      My reaction now is much different and I love the blog your link referred to.
      I too have many concerns now about the language we use; particularly the Hi/Low dichotomy which is so demeaning in the inbuilt presumption the Low refers to IQ.
      My personal belief is that one could use such terms to refer to coping abilities and the subsequent impacts on an individuals communication and consequent day-to-day life skills for my research into non-verbal Autists shows that many if not most have difficulties in being able to find a way of making the rest of the world hear them.
      Aspergers is, I believe, just a subset of Autistics where the differences in development in their brains hasn't impacted their ability to speak; whereas Autism as the term is more generally used refers to those whose speech is affected.
      I am proud to be who I am and to have the brain and abilities that I have; yet that in no way makes me the superior of anyone. We each have different abilities and we can be proud of who we are and how we think.

      I agree that language is a wonderful tool for communication of ideas and values; but, it is also a very very dangerous one when misused.
      There is a real problem for many with choosing Autism as their defining label and that is the persistence of the old established meaning of the term where many of my generation particularly (born 1950) associate with those who could do nothing for themselves. It is a history that must be overcome but the task will be a difficult one.
      The biggest problem I see with Language is the way that certain groups will adopt a term and use it in a way to mean something specific: eg Gay. I have no problem with who they are but mourn the loss of the word from our Language.
      That is a big danger, as you point out, with words like Aspergers, Aspie and Aspergian etc. where some attach an element of superiority to them.

      Keep going with your wonderful thoughts and pieces in your excellent blog.

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  12. I am rather taken with the mnemonic 'OTS' for On The Spectrum. Difficult to see how anyone could take exception with that.

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  13. I agree with the post. Aspergers does seem to be bandied around as an 'autism-lite' or even as not really autistic at all. I dislike the descriptions of 'mild autism' and 'mild Aspergers'.

    I'm not keen on 'On The Spectrum' either. I had a disability advisor actually say that 'everybody's actually on the spectrum'. I despair!

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  14. I agree with this post, but here's a counter-argument:

    In terms of practical day to day experience, I have to say I have more in common with Neurotypicals than I do with Autistics who are on the very severe end of the spectrum, so at least at a descriptive level, Aspergers can be useful to describe what someone is like, or what their experience is like, as opposed to the profoundly Autistic person. If you put me in a room full of "Aspies", I'm just going to be able to connect better with them than either a room full of NTs or a room full of profoundly autistic people. Not a judgement against either of them, I'm just presenting the argument that Aspergers is useful at a *descriptive* and *personal* level.

    That being said, the dividing line is quite artificial, and amorphous, and I think Aspie/Aspergers ought to be phased out. I do use the term Aspie with other Aspies. But personally I don't like the word. And as Autism becomes more and more of a culture, I see it as a dividing force, and it gives society extra power to define us, to dice us up into neat little categories that they have created according to difference, not similarities.

    Funny thing is that while it seems that a lot of people prefer Aspergers because the word Autism is a shameful thing, as a kid I was referred to (behind my back) as having Aspergers, and so the word came to have a shameful association, and so I actually prefer the word Autistic.

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  15. Two things:

    Even the DSM says that among autistic people who learn to speak, it's very common for people to have better expressive than receptive language. So this isn't a rare thing.

    Also in response to Brian. Be careful what assumptions you make about people labeled profoundly autistic. Some are exactly like the stereotypical aspie, except they have movement problems that prevent useful speech and some other parts of voluntary movement. Your assumption that all are unlike you or that you are closer to nonautistic people seem to be based on surface appearances more than actual cognitive style or way of perceiving the world.

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  16. I totally agree with this posting, Lydia. Thank you for writing this and explaining what being Autistic truly means. Every one should learn from this post!

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  17. This comment has been removed by a blog administrator.

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    1. This comment was moderated as irrelevant and derailing.

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  18. "Using Autistic is a symbol of solidarity with all other Autistic people, because it emphasizes our similarities down to our very neurological wiring rather than calling attention to superficial or socially constructed differences in our apparent abilities. It makes it harder for those opposed to neurodiversity to draw on the high-low functioning dichotomy or the differences in criteria for diagnostic labels, because the word "Autistic" is all-encompassing. (...)

    Autistic is an identity label that reclaims the notion that it is okay to be Autistic in any form, with any diagnostic label, with any manner of visibility of disability, with any severity of disability -- and that we are of equal value and significance as Autistics both individually and as part of the community."

    I really loved that final part of your post. As always, thank you so much for such an informative and thought provoking post.

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  19. you tell me not to say aspie, but then people yell at me for saying autistic because i don't "look" or "act" autistic. what the hell am I supposed to call myself?

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    1. My take on it is, call yourself whatever rings true to you.

      I can't speak to your experience, but for a lot of us, the people who're telling us we're not actually Autistic now are the same people who, when we were growing up, would've had no reservations about saying that there was something very wrong with us and our "behaviors" that needed fixing. Whether this is an honest lack of understanding of the concept that Autistic people grow and change just like everyone else, or more cynically if it's being used as a delegitimization tactic to force us to either say how dysfunctional we truly are or withdraw from the conversation, neurotypical people don't get to declare someone not Autistic the moment they start taking that to mean anything good.

      On the other hand, if Asperger's is what you know, and it's what you see yourself as, or if the flack from most people just isn't worth the explanation most times, then cool, just as long as it doesn't become a thing of differentiating yourself from all those other Autistics that people like even less.

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    2. Good stuff, Shain. Thanks for that.

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  20. I have Asperger's, I have Autism.

    I see Asperger's as a subtype of Autism, not the same or different, but more similiarities than differences.

    I can say Autistic (or Asian), or be more specific in saying I am Aspergerian (or Thai)

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  21. I continue to use Asperger's as a self descriptor as that was my formal diagnosis. I suppose that's a bit of ASD pedantry on exhibit. But I abhor the aspie-supremacy ideology and am also quite weary of trying to figure out what exactly I should be calling myself, other than Bob. Am a "person with autism", "autistic", "I have and ASD", "I'm on the spectrum"?????

    Sigh.

    I'm Bob, I have this neurological variation that inhibits my social skills and communication. I adapt, have managed to do OK and since my late in life diagnosis have been doing much better. I've adopted the position that as long as someone doesn't wave their label around like some war pennant, I don't really care what words they chose to describe their place within the autism spectrum.

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  22. I'm autistic and feel excluded by my own community because everyone else like me identify as having Asperger Syndrome - there's this assumption that if you're independent with few problems in terms of your autism then you must have Asperger Syndrome, everyone talks about being an aspie and forgets that some of us are autistic. Before my diagnosis I assumed I was an aspie, after years of being alone and not knowing why I was the way I was I had an identity and a community, but being autistic some of that identity and community was taken from me as I'm not one of them.

    I suspect most people with AS diagnosis would have actually gotten an ASD diagnosis if they had been assessed as children when their autism was more obvious, or if it hadn't been for doctors ignorance of the fact those of us with ASD could be just as functional as those with AS, or if it wasn't for doctors fear of the stigma that could have effected their lives or have left doctors coping with scared patients or parents. The sad thing is that there is so little difference, the only thing that decided my ASD diagnosis was that I was not verbal until I was 7 years old, I'd argue this isn't a difference in my brain to my AS peers but simply for whatever reason they spoke before me - that's it, they are no better than me, I am no more autistic than them...so why the distinction, why the need to distance us, why divide our community in this way? How does this help anyone?

    To me this is very much a case of 'othering' saying that aspies aren't like THOSE autistic people, the ones who society views as abnormal or worth less, that aspies are just quirky people with all the good stuff of autism and none of the bad - it dehumanises those who are severely effected, and means those who are less severely effected are not recognised as having problems. Asperger Syndrome/Autism is the new High-functioning/Low-functioning, it's being used in exactly the same way and it's just as incorrect, harmful, and just as much a misrepresentation of autism.

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  23. I'm autistic and feel excluded by my own community because everyone else like me identify as having Asperger Syndrome - there's this assumption that if you're an independent adult with few major problems in terms of your autism then you must have Asperger Syndrome, everyone talks about being an aspie and forgets that some of us are autistic. Before my diagnosis I assumed I was an aspie, after years of not knowing why I was the way I was I discovered an identity and a community, but being autistic it feels like some of that has been taken from me.

    I suspect most people with AS diagnosis would have actually gotten an ASD diagnosis if they had been assessed as children when their autism was more obvious, or if it hadn't been for doctors ignorance of the fact those of us with ASD could be just as functional as those with AS, or if it wasn't for doctors fear of the stigma that could have effected their lives or have left doctors coping with scared patients or parents. The sad thing is that there is so little difference, the only thing that decided my ASD diagnosis was that I was not verbal until I was 7 years old, I'd argue this isn't a difference in my brain to my AS peers but simply for whatever reason they spoke before me - that's it, they are no better than me, I am no more autistic than them...so why the distinction, why divide our community in this way? How does this help anyone?

    To me this is very much a case of 'othering' saying that aspies aren't like THOSE autistic people, the ones who society views as abnormal or worth less, that aspies are just quirky people with all the good stuff of autism and none of the bad. Asperger Syndrome/Autism is the new High-functioning/Low-functioning, it's being used in exactly the same way and it's just as incorrect, harmful, and just as much a misrepresentation of autism.

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  24. I so appreciate your post and raising this discussion.

    I'd like to take the thought a step further, and bring another truth to light. All labels are meant to divide. We (I'm autistic as well) want equality. We want acceptance. We want equal rights for ourselves and others in our community and all communities. Any label will give others the key to put us all in the "appropriate" box and lock us away with their stories of what our label means to them. My autism is different from your autism, regardless if we received the same diagnosis and told we "function" on the same level. Perhaps we can relate on topics such as sensory issues, social anxiety, etc., but your experience is different from mine.

    The label "disabled"—no one is completely "disabled", unless in a vegetative state being kept alive by machines. I know a woman who uses a wheelchair to be mobile and runs an entire Humane Society office full time. She seems pretty able. I couldn't do that. I don't know one neurotypical who is completely "abled". Great at running in marathons not needing the assistance of a wheelchair but cannot manage to create their own budget and get out of debt. Great at being in big social gatherings but cannot tolerate one-on-one.

    Why give the label so much power and not the individual?

    Because this label of autism has such a powerful story behind it in many minds, some doctors are not evaluating their autistic patients for actual symptoms (such as a severe ear infection leading to head-banging or self harming behavior). Instead they are just saying, "She's autistic. Put a helmet on her. Grrrr. At a recent conference, a doctor shared that a non-verbal girl had been self harming by hitting her neck for six years and her regular physician just prescribed a cocktail of Rxs to numb her. When she went in to see the new doctor for a drug trial, they discovered when placing a scope down her throat that she had NO lining in her esophagus. Six years! They treated the issue, she instantly stopped self harming and began speaking shortly thereafter. The label worked against her in this scenario.

    I am not denying my autism. I embrace it. I just don't want any label stamped on me so that my opinions and feelings can be dismissed by ignorant (but perhaps well intentioned) people). I do love that the label empowered me to find the whys and hows of my brain and pointed me in the right direction when it came to learning about what works and doesn't work for me (it pointed me to this blog!), but I do not want to protect the label so much as to close the doors to understanding for others. I am an advocate. I want to break down the walls of ignorance by being open and sharing my experience and being inspired by yours. So, I am extremely sensitive to sound, sight, touch, smell - can I let you know that without you creating your own story based on my label? Can I share my experience before you dismiss me? Can you see me in you and you in me? That is where peace and equality starts. You bleed, I bleed. We all have specific needs in order to get though life just as cacti all have different watering requirements. Is one cactus better or more important than the other? No. Yet I have a few, surviving in my house, side by side with their different needs and it's ok by me.

    In summary, we are in the midst of a revolution so we carry our label, we wave our flag high, we want our voices heard. We bond over it, we laugh when we see our sameness amongst ourselves and it feels good to know we're not alone (reeeeally good), but ultimately, for equality and acceptance to truly exist, one day, the label will lose its value and our individual selves with our quirks, deficiencies, strengths, and hearts will be what is valued, what we carry high, and what we bond over. (All IMHO, of course.)

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  25. These are the reasons I've ceased entirely to identify as being an 'aspie'. (Although I only got around to changing my Twitter bio earlier today... *sigh*)

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  26. So I have to "admit" to being sick...mentally ill in order to be ok...?

    Sorry, I'm an aspie and I'm just different. NOT sick...NOT wrong..

    In fact I dont want to be different. I like being an aspie.


    And this is to be honest the first negative view on aspies I've ever seen.
    It can be hard being an aspie if you dont know what you are. But once you know. You learn to work with the positive side of it. And that changes everything.
    Aspies are an important factor in the evolution of mankind if not the raison we lifted ourselfs out of the dark ages.

    And yet here we go again...

    Wer are mentally ill....ofcourse, and the world is flat.

    The fact that my minor social skills and my way of thinking does forms a problem in certain situations has more to do with the simple fact that I'm a minority. Nothing else.

    But the good things outdo the bad things by far.

    So before you go off labeling yourself with an mentall illnes. Do some other research. You got some inspiring fellow aspies out there ;-)

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  27. You're forgetting the practical issue of "Aspergers SOUNDS better than Autism". Yeah, I'm totally going to further reduce my own chances in life for the sake of a group of people I don't even know :/

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  28. I had a psychologist tell me I had Aspergers, then pseudo-yell (aka, strongly state with a snappy attitude) at me when I tried identifying as Autistic because apparently that didn't count as being Autistic...? People are always telling me "you mean you have Aspergers, you're clearly not Autistic because you can talk. And I don't see you having a meltdown right now". Okay, I added that last part, but it's really implied. It's like they want one of those depressing videos moms make of small children having meltdowns as proof or they won't believe me. Some mental health people don't believe me because I'm a girl. Like girls can't have it or something.
    I'm getting really tired of all this, it's exhausting...
    I switch between Aspie and Autistic. Stopped saying 'Aspergers' only because it sounds like @ss-burgers. Aspie sounds kind of cool because asps are a type of snake and snakes are really cool and their scales feel really relaxing.
    My point... why does everyone on both sides have to yell at me and tell me how I have to call myself? If I say I'm autistic, I'm insulting 'low-functioning' autistics who need daily help and I should be ashamed of myself. If I say I'm an aspie, apparently I'm emphasizing dangerous ideas and I'm a supremacist of some kind? For f*ck's sake, someone on some side needs to stop. I feel like I'm in some sort of semantic tug-of-war. I don't have the energy to defend myself constantly, and yet everyone's demanding I do. I tried doing the "I've got ASD" because I figured it's an all encompassing title, and got told "that's NOT an official diagnosis" by someone with significant pull on the future of my school career who I need to keep happy (I've had problems with school authorities before pre-diagnosis - if they're not happy, they can seriously mess you up, I don't trust them at all). I'm so, so tired of all of this. Wish I'd been born a chameleon, then I could just change to make people happy according to whatever background they put behind me.

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