Fact sheet on community, politics and culture of Autism, an Autism Spectrum Disorder


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.


Autistic culture

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 culture”.

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 her behavior.


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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There are many adults living with Autism or Asperger's syndrome who dispute the diagnosis, interventions or perceptions from non-autistic people