Thanks, Susan!
Jim Sinclair
following paragraph in the Editor's Letter on page one:
"Yes, I just INTENTIONALLY used the term `autistic loved one' instead of
the currently-popular term `loved one with autism'. This is because
_many_ of the more advanced autistic people with whom I have spoken feel
strongly that who they are as a person and being autistic are
inseparable. Therefore, they prefer being referred to as an autistic
person, rather than a person with autism. I do not presume to be an
adequate judge of what is right or not right on this issue. In fact, I
frankly think that we may all be spending just a bit too much time
worrying about what nomenclature is currently correct when there are so
many more critical issues with which we can concern ourselves. However,
in deference to many requests, I will (at least in Volume II of the 1992
Maap) use the term `autistic person'."
I've been stating my objections to being called a "person with autism"
for years. I have written to the ASA "Advocate" (and received a very
condescending reply from the editor), stated my position at conferences
(and later been thanked for contributing my perspective as a "person
with autism"), and used the term "autistic person" rather than "person
with autism" in all my writing.
Most of the current professional literature insistently refers to us as
"persons with autism," clearly believing that non-autistic people are
better qualified than we are to tell us what we are to be called. The
ASA Board has passed a resolution *requiring* the use of "person with
autism" rather than "autistic person" in ASA publications. I agree that
arguments about language are taking time and attention away from more
important issues. But even with my minimal understanding of politics, I
can recognize the political significance of this: Possibly for the first
time since politically correct language invaded the disability
literature, the editor of an autism-related publication has granted us
the courtesy of respecting what *we* call *ourselves* over what the
speech police have decreed we should be called. I hope the change lasts
beyond this single issue of the newsletter. Letters to The Maap in
support of this change in editorial policy may make that more likely.
(The address is P.O. Box 524, Crown Point, IN 46307.)
JS
Jean B. Hunter
with the same sense of an alien consciousness as I felt when reading your
response to the "five reasons parents grieve" posting. If you're
so inclined, I'd like to pursue the issue a litle farther to try to discern
thedifferences between your viewpoint and mine.
If I understand correctly, you prefer to be called an autistic person
partly because you don't want non-autistic peopltaking away your right
to name your condition or viewpoint - a condition or viewpoint which
is an intrinsic part of you. Did I get that right? Is it the whole story?
Doubtless the editors at ASA explained that they use "person with autism"
raher than "autistic person" because they want to stress
the person's personhood before his/her autism. To a non-autistic person
this reason makes good sense; to generalize, non-autistic people of good will
try to approach others with a respect for their opinions arising from a
belief in a common bond of humanity which transcends belief structures.
(i hope that's understandable) Now, what I can't tell from your posting
is whether you reject their expanation or accept it, or if agreement or
disagreement with their viewpoint is irrelevant to your decision not to
accept the "person with autism" label. Or, if you find their explanation
understandable in the first place.
Could you explain your thought process more in depth? Your answers will
help me understand the autistic viewpoint better, and specifically, will
help me formulate a response to your rebuttal of "Five reasons parents grieve".
Thanks in advance, Cheers -- Jean
Jim Sinclair
Well, as I wrote to The Advocate, modifiers (adjectives and adverbs) are
part of language for reasons that have soundness. Modifiers facilitate
the transmission of meaning with efficiency. Sentences without modifiers
tend to have awkwardness and to display the quality of stiltedness. In
addition, since people who do not have language processing problems can
with instantaneity translate sentences without modifiers into sentences
with modifiers, the degree to which creating phrases that have convolutedness
causes people with language processing problems to experience confusion
may exceed the degree to which it causes people without language processing
problems to experience consciousness raising. I have giftedness with
language, so I can translate clauses of nominality into adjectives with
adequacy of facility. I'm also autistic, and I prefer nomenclature that
has straightforwardness.
Reason #1, in other words, is that autistic people typically prefer
straightforward language and are easily confused by convoluted language.
Adding extra words and grammatical contortions to say exactly the same
thing that can be said with a single adjective makes it more difficult
for autistic people to participate in discussion. Therefore, doing this
within a context where autistic people could reasonably be expected to
want to participate (such as discussions about autism) shows little more
than inconsideration and disrespect for autistic people's communications.
The fact that non-autistic people came up with the term "person with
autism" is not in itself a reason for me to reject the term. After all,
it was also non-autistic people who came up with the term "autistic," and
it was non-autistic people who invented language in the first place. But
when I--and other autistic people--choose to refer to ourselves as autistic
and express our preference for being referred to that way, and we are told
that our opinions don't count because non-autistic people have decided it's
better for us to be called something else, this shows absolute contempt
for us as self-aware, communicatively competent people.
The idea of putting the "person first" in language makes about as little
semantic sense as saying "White Christmas" is racist. Adjectives *always*
refer to nouns, and in English, adjectives usually precede the nouns they
modify. "Autistic person" is perfectly correct English. Furthermore,
when you say, "So-and-so is autistic," it goes without saying that you're
referring to a person. Autism is a characteristic that occurs in persons.
A chair cannot be autistic. A mushroom cannot be autistic. Only a person
can be autistic. We may say that language or behavior are autistic, but
again, the language or behavior being referred to is the language or
behavior of persons. What "autistic behavior" really means is "behavior
that is characteristic of autistic people."
Your "belief in a common bond of humanity which transcends belief
structures" is not usually manifested through contorted language. Non-
autistic people have not decided to banish *all* adjectives when referring
to people. Qualities that are considered neutral or positive are still
described with adjectives: You say "tall person" and not "person of
height," "blond person" and not "person with low hair pigmentation,"
"athletic person" and not "person with athleticism." This is considered
acceptable because in connection with physical appearance or areas of skill
and interest, you can agree that terms like tall, blond, and athletic
apply to persons. When you decide it's necessary to take an adjective
away, to separate the quality from the person, you are revealing the
belief that there's something *wrong* with that quality--something so
wrong that having it connected with one's personhood somehow diminishes
that personhood. I am aware that it has been a common perception that
autistic people have diminished personhood (a perception fostered by
the writings of people like Bettelheim and now carried on by neo-
Bettelheimians like Frith), but this is a perception held and
promoted by non-autistic people. To put it bluntly, *your* prejudices
are not *our* problem, and you should find ways to deal with your
prejudices without trying to cut our nature off from our personhood.
It is tremendously invalidating to say that people's basic perceptual
and mental processes are so inferior that they're not compatible with
personhood.
Autism is not a peripheral attribute that can be cut off and still
leave the same person without it. You could have a different physical
shape and appearance, a different hobby, a different set of skills in
areas that are not central to your personality, and you would still be
yourself. Yet you see no problem with using adjectives to describe
those characteristics of yourself. What about attributes that are
more significant--things like culture, gender, or spirituality? Do
you call yourself a person with femaleness, a female person, or a
woman? A person with American citizenship, or an American? What about
your relationships with your family, the people who mean the most to
you: Are you a person who has offspring, or a mother? When attributes
or circumstances are important enough to be central to a person's
lifestyle, there's a tendency to use *nouns* rather than adjectives
to describe them, and again, no one questions that it's a *person*
who is being referred to as a woman, American, Presbyterian, or
whatever. What's the difference between being musical (adjective) and
being a musician (noun)? One indicates a greater importance of music
in the person's life. Are these descriptives depersonalizing? Would
it be more respectful to refer to both the musical person and the
musician as "persons with musicality"?
Yet autism runs at least as deep as any of those other central
attributes. Deeper than most, in fact. Persons who are not autistic
share many many common experiences and perceptions regardless of
things like gender, culture, religion, family status, etc., which are
not shared by persons who are autistic. And as more of us discover
each other, we're beginning to find that persons who are autistic
share common experiences and perceptions which are not shared by
non-autistic persons. Autism is an integral part of who we are. Of
course it's not ALL of who we are (any more than being female or
American, etc., is ALL of who anyone is), but it is an inseparable
part of who we are. It is not possible to separate the autism from
the personhood: if we were not autistic, we would not be ourselves.
That's why some of us refer to ourselves simply as autistics, as a
noun. The reference implicitly assumes that an autistic is a person.
"Autistic" simply describes a certain *kind* of person. There's
no stigma in it because there's nothing wrong with being autistic.
It's just one way of being human, that's all.
Apart from all the theoretical considerations, there's also my own
personal experience with the ways non-autistic people treat me. It
seems that among people who insist on making a distinction between
the person and the autism, I am never seen and related to as myself.
I'm seen either as a person with AUTISM--the autism overshadowing the
personhood so that I'm seen only as a collection of symptoms and
deficits, not as a credible, self-aware, self-directed being--or as a
PERSON with autism--I'm seen as a person (at least initially), but I'm
expected to be a person "just like everyone else," with no recognition
or tolerance for the differences between me and people who aren't
autistic. This often leads to mistreatment when I don't fulfill those
expectations. In order to know *me*, you have to recognize both my
personhood and my autism at the same time. You can't break them up.
JS