Autistic

5 Feb

This is one of those posts where the idea has been rolling around in my head for a very long time. For whatever reason, I feel the need to finally put it into words.

There is a struggle going on as to whether the word “autistic” is a valid now. As in, “Autistics deserve better”. There is a big push for “person first” language such as “people with autism deserve better”.

I’ll admit, I use both.

I’ll also admit, I think that people with autism deserve to have the vote in how they can refer to themselves and how they want others to refer to them.

Arguments against “autistic” range from silly (“autistic isn’t in the dictionary”) to something I can at least understand, if not fully agree with (“person first language honors the person, not the condition”).

On example of the push for person-first language cam in the last year or so. New York State passed a law requiring person first language in official documents. One autistic I know pointed out to me that groups such as the Society for the Blind or the Society for the Deaf, for example, might not appreciate the idea. Think of changing the name to “Society for people with blindess”. Any reason to do that?

Much of the discussion of “person first” in regards to autism, I am fairly sure, based on the nature of the term “Mental Retardation”. Once we hear “mental retardation”, it is hard to not hear “Mentally Retarded”, “Retarded” or the word that was discussed a lot in 2008: “Retard”.

“Retard” is vile and pejorative. It is an ugly playground taunt that has no place on the playground and unfortunately many adults never left behind. It has tainted the term “Mental Retardation”. Journals now recommend avoiding the term “Mentally Retarded”. Here is an excerpt from the Information for Authors on the American Journal of Mental Retardation (AJMR) website:

When context makes it clear whether an author is referring to people with mental retardation or when it is otherwise unnecessary to refer to intellectual level or diagnostic category, authors should use the most descriptive generic terms, such as children, students, or persons, without using qualifiers such as “with mental retardation,” “with handicaps,” or “with developmental disabilities.” Under no circumstances should retarded be used as a noun. Prepositional constructions such as “students with mental retardation,” or “individuals who have mental retardation’ are preferred over adjectival constructions such as “mentally retarded people,” except when clear communication dictates occasional use of adjectival designations. Because normal has multiple meanings and may inappropriately imply abnormal where it is not applied, this word should not be used. Instead, more operationally descriptive terms such as “intellectually average pupils” should be used.

(emphasis mine)

There is a lot of interesting stuff there. I like, most of all, the suggestion that generic terms (children, students or persons) be used as much as possible.

An interesting thing to note is that if you look on the journal archive page, you will see that starting in 2009, AJMR changed its name to the American Journal of Intellectual and Developmental Disabilities (AJIDD). This is in part to recognize the broader scope of the journal (which includes papers on autism, fragile-x and other conditions). When I first saw this change, I couldn’t help thinking part of the reason is to get away from the term “Mental Retardation” as well and this is confirmed by an editorial in the first AJIDD issue:

The Journal has also changed dramatically over the years, with the issues addressed reflecting advances in technology, the advent of new theories and methods in other fields, and changing societal concerns. These influences have also led to a name change for the Journal. In part, the change has been motivated by a desire to avoid the negative connotations that have come to be associated with the term mental retardation. I fully endorse this change in terminology because it reflects our field’s commitment not only to our science but to the people whose lives we hope to improve through our efforts. Quite simply, the change in terminology is a tangible sign of our respect for, and solidarity with, people who have disabilities and their families.

The phrase I focus in upon is “… to avoid the negative connotations that have come to be associated with the term mental retardation.” (emphasis mine)

You see, it wasn’t always that “mental retardation” held as negative a connotation as it does today. More to the point of this post–we don’t have to let “autistic” become negative.

From my vantage point it seems as though if we say, “Don’t call my kid autistic” or “Don’t call me autistic”, we are creating the negative connotation where one doesn’t exist today. What if “the blind” or “the deaf” had complained years ago? Would we now be cringing when we hear the names of societies for “the blind” or “the deaf”?

I am not so disingenuous as to ignore the major difference between deafness, blindness and autism. Of the three, autism is the one associated with intellectual disability and differences in personality. It is a harder battle to keep respect in the connotations of “autistic” than for “blind” or “Deaf”.

But, I for one am not willing to help make “autistic” a bad word.

105 Responses to “Autistic”

  1. mayfly February 10, 2009 at 22:00 #

    Interesting arguments. A person who has a single language is not as gifted linguistically as a person with two, but is infinitely more skilled than a person with none.

    Arguments saying we all have limitations fail to recognize this.

    There are those who will not acquire the necessary skills to live high-quality lives. I’ll never hold the record for the 100 meters. The two things are not comparable.

  2. David N. Andrews M. Ed. (Distinction) February 11, 2009 at 01:04 #

    Dedj (to Billy Cresp): “You have stated a lack of knowledge, a lack of experience and a lack of desire to gain either. You are clearly lacking an understanding of social systems and a lack of very, very basic psychology.

    I’m not going to guide you by the hand through this, as you seem to be accustomed to and appear to be expecting. It’s downright rude of you to have proudly done bugger all research but still expect to be taken seriously.”

    I’ve got a feeling that Billy Cresp is a concern troll: someone who puts forward ‘concerns’ but refuses to take on board anything put forward be others in the thread as information to answer or counter those ‘concerns’.

    Such a person is likely to be wasting our time.

  3. Dedj February 11, 2009 at 02:42 #

    I have no doubt that Billy thinks his concerns are legitimate, but they require massive levels of incompetance and stupidity to be virtually endemic amongst our professionals, academics and health system(s).

    If accomodations and adaptations don’t work, you’d think with all the people involved that someone would have noticed (although people do notice and debate over ABA etc). But no, Billy “doesn’t think so” so they must be idiots. No evidence, no arguement, just “doesn’t think so”.

    Billys’ “I don’t agree with it” doesn’t cut it. We don’t want his clearly biased ‘opinion’ on what is out there, laughably dismissing refinement and development as some proof of lack of validity. He needs to start giving the ‘validation’ he selfishly demands of others but refuses to supply.

    He has given no sign of ability to do this, and has even stated lack of experience, skill and desire to learn.

    Concern troll is an accurate description.

    I apologise to anyone who has had to sift through all this to get any good out of it. This could have become a decent debate over the core essence of disability, but it went south. For my part in that I must apologise again.

    ————–

  4. Billy Cresp February 11, 2009 at 03:00 #

    “Sorry but if your definition of ‘basic abilities is this:

    “Think about things like speaking, understanding how to use language, using basic home appliances, how to shop, remembering to do things, driving, reading, writing, etc.”

    Then , yes , that’s exactly what adaptations and accomodations do. Try asking an OT or SaLT what they do for a living.”

    Again, Dedj, tell me how “adaptations” get rid of impairments in those skills. Tell me if they even do. I want such a massive possible claim of yours to be clarified. Tell me what adaptations are capable of achieving, instead of evading me with your arrogance.

  5. Amanda March 2, 2009 at 01:04 #

    Okay, let’s see.

    When I’ve been unable to communicate with most people through speech through speech but otherwise able to handle language in some respect, communication through writing has been extremely important.

    When I’ve been unable to communicate with most people through language, the existence of people who are able to accurately interpret my thoughts for other people have been extremely important.

    When I’ve been unable to walk, manual wheelchairs have been extremely important.

    When I’ve been unable to get out of bed, motorized tilt-in-space wheelchairs, and computers with programs that allow the same sense of exploration that taking walks can create, have been extremely important.

    Cats give me a level of friendship that only a few humans are even capable of providing, as the majority of humans are unable to interact with me on the same complex level that cats are.

    (Most humans have brain programming that teaches them that I am someone other than I am. They don’t view that as a limitation, because most of them have it and it’s heavily accommodated to the point they don’t even notice it’s there. But I certainly notice it’s there, because it prevents their full social interaction with me, as much as any limitation of mine prevents full social interaction with them. Some humans aren’t like that, I welcome their contact as much as I do that of cats. But it’s only among cats that I can feel peaceful and interact meaningfully with a large group at once, which means that despite a severe cat allergy, I absolutely love spending time among large groups of cats.)

    As far as cooking, eating, driving, and all those sorts of things, I don’t understand why it matters so much who does those things. When I’m capable of them, I do it. When I’m not, someone else does. I’m a client of a large service system that allows those adjustments to be made constantly based on the shifts in my own abilities.

    People who just say it’s “obvious” that two total inabilities to do something are utterly and completely different from each other, tend to strike me as people who haven’t seen enough different societies to see how simple differences in what is automatically accommodated by a society affect what is seen as a severe disability and what is see as a simple and unremarkable difference between two people. I have seen enough different cultures to see so many ways of doing things that yes, it does matter. There are societies where to be what most people consider “retarded” means nothing. Some of my relatives come from such societies, some relatives of staff people who’ve worked for me come from such societies. One such person described her uncles in a village in Mexico who have families, jobs, and everything else, and are not considered disabled at all, despite the fact that in the USA they’d be called retarded and put in group homes and utterly prevented from having those things. You can’t truthfully say that cognitive impairments can’t be accommodated if you’ve seen that difference between two societies that treat them so differently.

    And to me, what the “severe” in “severe disability” actually means, is the distance between how the person is built, and what the society they live in is willing to automatically accommodate (yes, I subscribe to something close to the social model of disability — seeing the differences I’ve seen between different societies, I can’t help it). That’s why a “severe disability” in one society can vanish in a society that treats that person’s particular version of human variation as normal.

    This isn’t an academic game of words to me. I’ve seen it. And I’ve lived things my society views as congenital impairments, acquired impairments, progressive impairments, and things that sort of break the mold for all of those things. My level of happiness has varied throughout my life. So has the level of difference between my body’s functioning (this includes my mind) and the expected functioning of someone’s body in the society I live in. But these two things have absolutely no correlation with each other. There’s no direct correlation, and there’s no reverse correlation, there’s just plain no correlation.

    So I can state from a position of experience (in all probability, of more experience than the commenters who believe otherwise than me on this) that with a tiny number of exceptions (that are almost undoubtedly not what people think they are, so don’t go there, it’s private) it is not how my body functions that determines how happy I am. There are many frequent commenters on this blog who know me personally and can back me up on this.

    And one of my offline friends is (and prefers to call herself this, rather than any euphemisms) both autistic and retarded (and has multiple physical conditions as well, and has a speech impairment), and totally agrees with me on this matter — it is how other people treat her, and the level of accommodation she gets, that determine how happy she is, and what she has access to as well. She finds it as patronizing and outright nasty as I do to be told she just needs to be changed into a “normal” person in order to be happy, or to be told that she isn’t really very impaired if she’s as comfortable in her own skin as I am in mine and non-disabled people are in theirs.

    Our existence is of course, very inconvenient to people who are dead certain that their own differences from the norm are what cause their unhappiness (and whose differences from the norm are quite often less extreme than ours, all of which completely fouls up their worldview on disability). But we’re going to keep on existing.

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