COMMUNITY, POLITICS &
CULTURE OF AUTISM
Terminology of autism
When referring to someone who is diagnosed with
autism, the term
'autistic' is often used. Alternatively, many prefer to use the
person-first terminology 'person with autism' or 'person who experiences
autism.' However, the autistic community generally prefers “autistic”
for reasons that are fairly controversial.
Many autistics who express their views on the Internet have stated
their preference for the word autistic to be used as both an adjective
and a noun; they dislike the politically correct person-first terminology.
Autistic author, Donna Williams, has written about this group as
culturalists, distinguishing them from curists who see autism as
a condition requiring cure. Some persons with Asperger’s
syndrome prefer to be called 'Aspergerian' or 'aspie'. Others
with Asperger’s Syndrome prefer to refer to themselves collectively
as ''autistics', preferring to see themselves as part on one collective
spectrum rather than having a condition different or separable from
autism itself. There are, however, moderates who prefer to think
of treatment and management of extreme functioning issues in autism
rather than seeing everything as either culture or cure.
Person-first terminology is preferred by many
with medical conditions, such as AIDS or epilepsy,
where it may serve to remove some of the stigma of these illnesses.
Many in the autistic community, including some persons who are considered
to be severely autistic or low-functioning, feel that to use person-first
language conveys the impression that autism is another such disease,
something that can and should be cured. These autistics feel that
autism is an integral part of their identity, that the person and
the autism cannot be separated, and that proposing the removal of
autism is akin to proposing death for them.
As with other such arguments involving the autism
rights movement, many parents of autistic children disagree
with the position of the autistic self-advocates. They contend that
the autism of those they live with is an illness, that autism is
not part of the person, and should be removed or cured. Others in
the autistic community who dislike being autistic and wish they
could be made non-autistic also continue to prefer the person first
terminology, as they do not want to identify autism as an integral
part of themselves.
Person-first terminology remains the preferred
form in most clinical literature about autism.
Sociology of autism
Due to the complexity of autism, there are many
facets of sociology that need to be considered when discussing it,
such as the culture which has evolved from autistic persons connecting
and communicating with one another. In addition, there are several
subgroups forming within the autistic community, sometimes in strong
opposition to one another. Autistic students generally have difficulties
fitting into the education system because of their behavior and
communication being seen as eccentric by their non-autistic peers.
Autistic community and politics
Curing autism is a very highly controversial and
politicized issue. What some call the “autistic community” has splintered
into several strands. Some seek a cure for autism - sometimes dubbed
by the term 'pro-cure'. Others do not desire a “cure”, because they
point out that autism is a way of life rather than a “disease”,
and as such resist it. They are sometimes dubbed 'anti-cure'. Many
more may have views between these two.
Recently, with scientists learning more about
autism and possibly coming closer to effective remedies, some members
of the “anti-cure” movement sent a letter to the United Nations
demanding to be treated as a minority group rather than a group
with a mental disability or disease. Web sites such as autistics.org
present the view of the anti-cure group.
There are many resources available for autistic people. Because
many autistics find it easier to communicate online than in person,
a large number of these resources are online. In addition, successful
autistic adults in a local community will sometimes help children
with autism, using their own experience in developing coping strategies
and/or interacting with society.
The year 2002 was declared Autism Awareness Year in the United Kingdom.
This idea was initiated by Ivan and Charika Corea, parents of an
autistic child, Charin. Autism Awareness Year was led by the British
Institute of Brain Injured Children, Disabilities Trust, National
Autistic Society, Autism London and 800 organizations in the United
Kingdom. It had the personal backing of British Prime Minister Tony
Blair and parliamentarians of all parties in the Palace of Westminster.
With the recent increases in autism recognition
and new approaches to educating and socializing autistics, an autistic
culture has begun to develop. Similar to deaf culture, autistic
culture is based on a more accepting belief that autism is a unique
way of being and not a disorder to be cured. There are some commonalities
which are specific to autism in general as a culture, not just “autistic
It is a common misperception that autistic people do not marry;
many do seek out close relationships and marry. Often, they marry
another autistic, although this is not always the case. Autistic
people are often attracted to other autistic people due to shared
interests or obsessions, but more often than not the attraction
is due to simple compatibility with personality types, the same
as for non-autistics. Autistics who communicate have explained that
companionship is as important to autistics as it is to anyone else.
Multigenerational autistic families have also recently become a
bit more noticeable.
It is also a common misperception that autistic people live away
from other people, such as in a rural area rather than an urban
area; many autistics do happily live in a suburb or large city.
However, a metropolitan area can provide more opportunities for
cultural and personal conflicts, requiring greater needs for adjustment.
Parents and relatives of autistic adults strongly fear their loved
ones would be unsuspected victims of crime and fraud, and autistic
adults are said to end up a target for hate crimes.
In schools it is commonplace for autistics to be singled out by
teachers and students as “unruly,” though an autistic student may
not understand why his or her actions are considered inappropriate,
especially when the student has a logical explanation for his or
Geekdom and autism
The interests of autistic people and so-called
“geeks” or “nerds” can often overlap as autistic people can sometimes
become preoccupied with certain subjects, much like the variant
normal behavior geeks experience. However, in practice many autistic
people have difficulty with working in groups, which impairs them
even in the most ‘geeky’ of situations. The connection of autism
with so-called geek or nerd behavior has received attention in the
popular press, but is still controversial within these groups.
Speculation arises over famous people and celebrities are now suspected,
but unconfirmed, of having autism or Asperger’s syndrome. They are
rumored to have most symptoms of autism or Autism Spectrum Disorder.
Biographers, personal physicians and media journalists continually
investigate these rumors, but some say that the claims are actually
libelous of their character as public figures, being singled out
as “odd” or “nerdy” people.
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