"Autism" vs. "Autistic" communities

Q: Hello,
By clinical definition, Asperger Syndrome and Autism are two related, but distinct diagnosis.* One can be clinically labeled "Asperger's" or "Autistic", but not both. Yet, why do some people with Asperger's call themselves "autistic"? Is this a dysphemistic attempt to make Asperger's appear to be as serious as autism, or is it just slang?. This causes confusion. For example, your mission statement starts out "The mission of AskAnAspie is to build a bridge between the Autism and Autistic communities." How does the same word get split into two different communities? How does one build a bridge between the same place? If there is a real difference between the two, then why use the same word? Perhaps you can explain this to those of us in both the neurotypical and the neurotypicalism communities. We like bridges, too.

Lenny Schafer


* Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV), published by the American Psychiatric Association, Washington D.C., 1994, the main diagnostic reference of Mental Health professionals in the United States of America. ("High functioning autism" is not a clinical term, not clinically defined, but perhaps another dysphemism for Asperger Syndrome.)

Firstly, thank you very much for including us in yesterday's report.
We've gotten more email in the past two days than in the previous two
weeks. Secondly, two of our panelists wanted to answer your questions,
so here are both replies:

From Brian:
I'll let Wiley address the part of your question about our mission
statement; she has quite an important distinction in mind, though I agree it
could use clarification. But as far as why many Aspies call ourselves
"autistic," I think there can be a few reasons, none of which is dysphemism.
Many Aspies -- quite probably most -- don't like the idea of treating
Asperger's as a crippling disability, so putting ourselves in the same broad
group as classic Kanner's Syndrome autistics, whatever else it may be, is
probably not an attempt at dysphemism.
So, is Asperger's a form of autism? Good question, and one that's widely
debated in the psychological community. It's partly a matter of semantics.
"Autistic disorder," as the DSM-IV defines it, is quite broad and somewhat
subjective. I would venture to say, however, that Aspies meet a whole lot of
the key criteria for it. (Note that Asperger's, disorder 299.80 in the DSM,
is closely related to classic autistic disorder, 299.00, and I would venture
to say that most or all Aspies meet the diagnostic criteria for 299.00.) In
fact, the diagnostic criteria for Asperger's are in many cases identical to
those of autism. The DSM rightly says that we often share with other
autistics a difficulty with nonverbal communication, a kind of friendship
not considered "appropriate to developmental level" by psychologists, need
our routines, love our perseverations, and stim constantly -- all traits
seen throughout the autistic spectrum. Some of these traits cause autistics,
including Aspies, serious problems -- some intrinsic, some a result of
living in a world where most people are not on the spectrum. Other traits
are, simply put, wonderful.
It's not just in the DSM that Asperger's and (especially high-functioning)
autism get lumped together or even identified with each other, either. Check
out the OASIS Guide to Asperger's Syndrome, which (among other sources) says
that AS, autistic disorder, and pervasive developmental disorder-not
otherwise specified are all usually considered autistic-spectrum disorders
(p. 18). But there is substantial debate on the matter; compare
http://www.udel.edu/bkirby/asperger/as_thru_years.html ("although the idea
of a continuum of PDD along a single dimension is helpful for understanding
the clinical similarities of conditions along the spectrum, it is not at
all clear that Asperger syndrome is just a milder form of autism or that the
conditions are linked by anything more than their broad clinical
similarities") with
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=114("Asperger's syndrome
is a form of autism"). And many sources recognize this
debate; one of OASIS' articles, at
http://www.udel.edu/bkirby/asperger/aswhatisit.html, says explicitly, "some
professionals feel that AS is the same as High Functioning Autism, while
others feel that it is better described as a Nonverbal Learning Disability."
So one quite cogent answer to your question of why some Aspies call
themselves autistics is because there's a good case to be made that we are.
It largely depends on how you define "autistic." If you think Kanner's
syndrome, with its associated pattern of difficulty learning language and so
forth, is the only "real" form of autism, then Asperger's is not autism. But
the similarities between Asperger's and autistic disorder as defined by the
DSM are truly striking, to the point where some would question whether it is
useful to make a sharp distinction. Certainly parents of Aspies have found
information for parents of Kanner's patients helpful, and vice versa. So
even if you don't buy into Asperger's as a form of autism, or even doubt
that it's on the spectrum at all, you can see the study of the relationship
between the two as a form of bridge-building!
--Brian
"Sir, I think all Christians, whether Papists or Protestants, agree in the
essential articles, and that their differences are trivial, and rather
political than religious." --Samuel Johnson

From Wiley:

I think Brian has done a great job covering the "Spectrum v. Separate"
debate, so I'll just add my personal reasons for thinking of myself as
autistic. Having read a large number of books about autism and
articles both by people on the Spectrum and by professionals, the vast
majority of it reminded me of myself. When I talk to people on the
"Autism" part of the spectrum, I can recognize the way their minds work
as being much more similar to my own than the minds of neurotypicals.
It's true that under normal circumstances I don't have the same
problems with language as someone with classic Kanner's, but even
there, if you put me in a stressful situation in which there is
background noise, I have a great deal of trouble speaking or
understanding spoken language. If at those times I meet the full
diagnostic criteria for autism, and at other times meet nearly all of
them, I don't think it's too much of a leap to think of myself as
autistic. More importantly and apart from any diagnostic criteria,
when I talk to other people on various parts of the autism spectrum,
they seem "normal" in a way neurotypicals never do. It's important to
remember that while to most people, autistic people are weird, to
people on the autism spectrum, it's nearly everybody who's weird. It's
incredibly difficult to quantify or put into words, I can just tell
that I have more in common with people on the Spectrum than off it.

As for your question about the wording of our mission statement, I
agree that having two such similarly named communities is confusing.
But we aren't the ones who named them. When groups of parents with
autistic children began to form, the community of those parents and the
professionals who helped them became known as the "autism community".
It is centered around parents, and parent topics like respite care,
special education, and treatment. When autistic adults began
establishing an online community, the logical name for that community
was "the autistic community." It is centered around autistic adults
and their issues, like disability rights, self-advocacy, and simply
having a chance to talk to people with the same sort of neurology.

It makes sense that these are two separate communities. They have
different aims and are composed of different people. It would be nice
if their names were a little easier to tell apart, but I can't really
think of a better name for either group. What I think doesn't make
sense is the lack of communication between the two groups. When an
autistic adult goes to a meeting of a parents' group, they are often
either made to feel unwelcome by strongly pro-cure organizations who
worry that adult autistics are only there to make a scene, or they
simply feel out of place at a meeting where the sign-in sheet asks for
the age of their child. Parents who try to join the autistic community
generally have more luck, although sometimes they are rejected by the
more radical hard-liners in the autistic community who feel that anyone
who even implies any form of autism has even the slightest disadvantage
is necessarily evil (a view which I, by the way, do not share in the
slightest.) And most parents don't even know there is such a thing as
the autistic community.

That is why we want to try to bridge the two communities. While they
are different enough to warrant separate groups, they ought to be each
other's staunchest allies, not wary strangers and occasional all out
enemies. When the Autism Society of America has a lobbying day for
special education funding, adult autistics should be lobbying right
there next to them. And when adult autistics are concerned that a new
Public Service Announcement by Cure Autism Now implies that they lack
minds and personalities, they should be given a fair hearing.

But trying to fit all of that into a mission statement would make it a
little unwieldy ^_^ I apologize if the shorter version was confusing,
we're working on some way of making the language clearer.

Wiley