Sociological and cultural aspects of autism

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Due to the complexity and variety of autism spectrum disorders, there are sociological and cultural aspects of autism 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 autism community, sometimes in strong opposition to one another.

Terminology

Although some prefer to use the person-first terminology person with autism,[1] some members of the autistic community prefer autistic person or autistic in formal English.[2] Common jargon terms include:

Phrases like suffers from autism are objectionable to some people with autism.[1][2]

Politics

Autism rights movement

Autism rights movement
Issues
Karen McCarron
Organizations
Aspies For Freedom
Autism Network International
Events
Autistic Pride Day
Philosophy
Sociological and cultural aspects
Neurodiversity · Neurotypical
People
Michelle Dawson · Temple Grandin
Jerry Newport · Amanda Baggs
Jim Sinclair · Donna Williams
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Further information: Autism rights movement

There is some work in the autism community on raising awareness among neurotypical society, but the very nature of autism makes self-promotion difficult for autistic people.

The autism rights movement encourages autistic people to "embrace their neurodiversity" and encourages society to accept autistics as they are. They advocate giving children more tools to cope with the non-autistic world instead of trying to change them into neurotypicals. They say society should learn to tolerate harmless behaviours such as tics and stims like hand flapping or humming.[6] Autism rights activists say that "tics, like repetitive rocking and violent outbursts" can be managed if others make an effort to understand autistic people, while other autistic traits, "like difficulty with eye contact, with grasping humor or with breaking from routines", wouldn't require corrective efforts if others were more tolerant.[2]

Many people—particularly if their lives are more affected by autism—disagree with the autism rights movement, saying they feel threatened that the movement overstates the gifts associated with autism and may jeopardize funding for research and treatment.[6] Many parents of children with autism say that the notion of "positive living with autism" has little relevance to them, and that autism rights are for "the high-functioning autistics and Aspies who make up the bulk of the movement".[6] Many parents say that behavioral therapy provides help in caring for children who are sometimes aggressive and that autism exacts a toll on the entire family.[2]

Autism cure movement
Issues
Autism therapies
Causes of autism
Sociological and cultural aspects
Organizations
Athletes Against Autism
Autism Research Institute
Autism Society of America
Autism Speaks
Autism Treatment Trust
Defeat Autism Now!
Generation Rescue
Talk About Curing Autism
People
Bernard Rimland
Paul Shattock
Vijendra K. Singh
Edward Yazbak
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Pursuit of cure

Further information: Autism therapies

Curing autism is a controversial and politicized issue. What some call the "autistic community" has splintered into several strands. Some seek a cure for autism—sometimes dubbed as pro-cure. Others view autism as a way of life rather than as a disease, and as such consider a cure unnecessary and resist efforts to find one[2][3] or view it as unethical.[7] They are sometimes dubbed anti-cure. A controversial public conflict occurred between parents of children with autism and autistic adults when the Supreme Court of Canada ruled against families asking the government to pay for their children's applied behavior analysis (ABA) as a medical necessity. Michelle Dawson, a Canadian autistic, had submitted testimony questioning the ethics of ABA. Her position angered many parents fighting to get government and insurance company benefits for their children.[2][8]

Some people within the autistic community hold the view that autism, as a valid and unique way of being, should be embraced and appreciated, not shunned or cured.[2][8] They say they feel threatened by the growing search for a cure, as if society has little use for autistics. They argue that autism is a normal part of the diverse human condition and say the focus on a cure amounts to treating them as a medical problem.[6] They lament that professionals, such as social workers, may discourage autistics from having children.[6] Some are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born"[2] and that most fetuses with autism would be aborted if prenatal tests for autism are developed.[3]

In a 2001 New Scientist interview about Asperger syndrome, Simon Baron-Cohen (an autism researcher) said that Asperger's differs from classic autism in terms of disability because, from the perspective of the person with AS, they may be different, but not disabled, while classic autism causes more difficulties. When asked if society should change for people with autism or people with autism should change to fit in with society, he said it's a bit of both: people with autism are trying to fit in, but society should change to some extent. Educating teachers and other children at school could help children who have a hard time at school and are often bullied and teased.[9] Baron-Cohen said:[3]

“ I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition. Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a 'cure for autism' is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special - such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth - would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference. ”

The autism rights movement says that efforts to cure autism should not be compared, for example, to curing cancer, rather to the antiquated notion of curing left-handedness.[2] The controversy has erupted on autism e-mail lists, where some parents are referred to derogatorily as "curebies" and "portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating".[2] These parents respond that this attitude shows "a typical autistic lack of empathy by suggesting that they should not try to help their children". They also say the activists opposed to a cure are are typically "high functioning" or have Asperger's syndrome.[2][8] Sue Rubin, an adult with autism who was the subject of the Oscar-nominated documentary Autism Is A World, is an example of an adult aligned with the cure group who says that the divide in the autism community is between high-functioning and low-functioning people; she says people with Asperger syndrome can communicate well and "pass for normal", while low-functioning people with autism are just "trying to get through the day".[10] Autistic activists reply that they represent both high- and low-functioning autism, which are not easily distinguished.[2][8]

Community and 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.[2] Autistic communities are groups of people who have been diagnosed as being on the autism spectrum, or who have self-identified as autistic, along with family members and other supporters. These communities exist both online and offline. On the Internet, autistic communities consist of networks of websites, forums, and autism chat rooms, and sometimes mailing lists. Many people use these for support, which for many can be vital, and communication with others like themselves. Autistic people who cannot speak, often can communicate by writing. The social limitations of autism make it difficult to make friends and establish support within general society.[11] For these and other reasons, the online community is a valuable resource. Wrong Planet and Aspies for Freedom have discussion boards; other, smaller discussion forums exist.

Because many autistics find it easier to communicate online than in person, a large number of online resources are available.[11] Some individuals with autism learn sign language, participate in online chat rooms, discussion boards, and websites, or use communication devices at autism-community social events such as Autreat. The Internet helps bypass non-verbal cues and emotional sharing that autistics find so hard to interact with.[12][13] It gives autistic individuals a way to communicate and form online communities.[14] Conducting work, conversation and interviews online in chat rooms, rather than via phone calls or personal contact, helps level the playing field for autistics.[6] A New York Times article said "the impact of the Internet on autistics may one day be compared in magnitude to the spread of sign language among the deaf" because it opens new opportunities for communication by filtering out "sensory overload that impedes communication among autistics".[12]

The interests of autistic people and so-called "geeks" or "nerds" can often overlap as autistic people can sometimes become preoccupied with certain subjects. 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.[15]

Recognition

Autism Awareness Year

The year 2002 was declared Autism Awareness Year in the United Kingdom—this idea was initiated by Ivan and Charika Corea, parents of child with autism, Charin. Autism Awareness Year was led by the British Institute of Brain Injured Children, Disabilities Trust, National Autistic Society, Autism London and other organizations in the United Kingdom. It had the personal backing of British Prime Minister Tony Blair.[16] British autism advocates want autistic people acknowledged as a minority rather than as disabled, because they say that "disability discrimination laws don't protect those who are not disabled but who 'still have something that makes them look or act differently from other people'."[3] But the autism community is split over this issue, and some view this notion as radical.[3]

United Nations

In 2004, some members of the autistic community issued a statement expressing their desire to be recognized as a minority group by the United Nations.[17]

“ This is a declaration from the worldwide autism community that from here on we wish to be recognised as a minority group.

We mean for this statement to begin a process of official recognition by the United Nations that we are indeed a minority group, and worthy of protection from discrimination, inhumane treatment, and that our differences are valid in their own right and not something that needs to be cured.

”

Autistic pride

Autistic pride refers to pride in autism and shifting views of autism from "disease" to "difference". Autistic pride emphasizes the innate potential in all human phenotypic expressions and celebrates the diversity various neurological types express.

Autistic pride asserts that autistic people are not sick; rather, they have a unique set of characteristics that provide them many rewards and challenges, not unlike their non-autistic peers.[11][3][18]

Autistic Pride Day is an Aspies for Freedom initiative, celebrated on June 18 each year. It is a day of celebration of the neurodiversity of people on the autism spectrum, compared by autism rights advocates to the civil rights and gay rights movements and even modeled after the Gay pride movement.[3]

At Autreat—an annual autistic gathering—participants compared their movement to gay rights activists, or the deaf culture, where sign language is preferred over surgery that might restore hearing.[2] Other local organizations have also arisen: for example, a European counterpart, Autscape, was created about 2005.[8]

Gender

Autism is thought of as a condition mostly affecting boys, with boys many times more likely than girls to be diagnosed with autism or Asperger syndrome. Girls with autism spectrum disorders are "research orphans" according to Yale's Ami Klin; some drugs used to treat anxiety or hyperactivity that may accompany autism are rarely tested on autistic girls.[19] Autism may express differently in girls than boys; girls may be more concerned with how they are viewed by peers, and the failure to connect with people outside of their immediate family could lead to severe anxiety or clinical depression.[19] Girls with autism who have normal intelligence may be more disadvantaged than boys socially because of the "rising level of social interaction that comes in middle school", when girls' "friendships often hinge on attention to feelings and lots of rapid and nuanced communication". Girls may suffer additionally by being placed in specialized educational programs, where they will be surrounded by boys and further isolated from female social contacts.[19] Although sample sizes are too small to draw firm conclusions, one study suggests that girls may fare worse than boys over the long-term in terms of marrying, having families, going to college, having a job, and living on their own. Females may also be different from males in terms of interests; girls with autism rarely have interests in numbers or have stores of specialized knowledge.[19] The profile of autism may change as more is understood about girls, whose autism may go undiagnosed.[19]

Adults

Communication and social problems often cause difficulties in many areas of an autistic adult's life. A much smaller proportion of adult autistics marry than the general population.[20] It has been hypothesized that people with autism are subject to assortative mating, that is, that they tend to mate with each other and produce autistic offspring.[21] This hypothesis has been publicized in the popular press,[15] but has not been empirically tested.

Baron-Cohen said that an increasing technological society has opened up niches for people with Asperger syndrome, who may choose fields that are "highly systematised and predictable". People with AS could do well in workplace roles that are "system-centred, and connect with the nitty-gritty detail of the product or the system".[9]

In a 2005 New Scientist interview, Temple Grandin (autistic designer of cattle handling systems) said that one reason she can easily figure out how a cow would react is because autistic people can easily "think the way that animals think".[22] According to Grandin, animals don't have "complex emotions such as shame or guilt" and they don't think in language. She says that, although not everything about animals is like a person with autism, the similarity is that they think visually and without language. She says people don't make this connection because the study of autism and the study of animal behavior are parallel disciplines involving different individuals.[22] Dawn Prince-Hughes, diagnosed with Asperger's, describes her observations of gorillas in Songs of the Gorilla Nation.[23]

Under the public law, in the United States, the public schools' responsibility for providing services ends when the autistic person is 21 years of age. The autistic person and their family are then faced with the challenge of finding living arrangements and employment to match their particular needs, as well as the programs and facilities that can provide support services to achieve these goals.

Literature

Works by people with autism today go back to the first published work by Temple Grandin in the 1980s.

The Curious Incident of the Dog in the Night-time is a novel whose main character is a communicating autistic. This book is slightly controversial, as the author himself is not autistic and based his character on an admittedly small sampling.[citation needed] He also used Simon Baron-Cohen's "theory of mind" idea which is not accepted by all researchers, let alone by autists themselves, and which Baron-Cohen himself no longer believes in.[citation needed] Other autists describe the book as "wonderfully accurate" in its depiction of how they experience life.[citation needed]

Margaret Atwood's novel Oryx and Crake has a university labeled Asperger's U, where almost every student appears to have Asperger Syndrome or autism in varying degrees of severity and form. People in the university refer to non-autists as neurotypicals and seem to view them as something altogether different (and perhaps inferior) to themselves.

The Autism Acceptance Book: Being a Friend to Someone with Autism, by Ellen Sabin at Watering Can Press, is an interactive children's book teaches children about autism, further develops their understanding for the people around them, and encourages them to embrace people's differences with respect, compassion and kindness.

Savants

Main article: Autistic savant

The term "autistic savant" is used to describe a person who is autistic and has extreme talent in one or more areas of study. Although there is a common association between savants and autism (an association made especially popular by the 1988 film Rain Man), most autistic people are not savants and savantism is not unique to autistic people, though there does seem to be some relation.[24] One in ten autistic people may have notable abilities, but true savants—like Stephen Wiltshire or the character in the film Rain Man—are very rare; only about 100 such people have been described in the century since savants were first identified, and there are only about 25 living savants.[25] (Kim Peek, one of the inspirations for Dustin Hoffman's character in the film Rain Man, is not autistic). A new theory proposes that everyone has savant-like skills, but these skills may be lost in non-autistic people because of a shift in the way they process information. "In autistic children this shift appears to be slowed or incomplete and so their savant-like processing style may be preserved."[25] There is a growing body of evidence that savant skills aren't unique to autism, but that "autistic individuals only exhibit skills that are exhibited by some proportion of the general population," according to Howard Gardner, of Harvard University.[26]

Notable individuals

Main article: List of people on the autistic spectrum
Main article: People speculated to have been autistic

Notable individuals with autism spectrum disorders represent diverse professions such as an anthropologist, video game designer and television producer as well as artists, authors and musicians and such figures as Richard Borcherds, a Fields Medalist winner,[27] Temple Grandin, a food animal handling systems designer and author,[28] Tim Page, a Pulitzer Prize-winning critic and author[29][30] and Vernon L. Smith, a Nobel Laureate in economics.[31]

There are many published speculative claims about historical figures who may have had autism spectrum disorders. Henry Cavendish, one of history's foremost scientists, may have been autistic. George Wilson, a notable chemist and physician, wrote a book about Cavendish entitled, The Life of the Honourable Henry Cavendish, published in 1851. From Wilson's detailed description it seems that while Cavendish may have exhibited many classic signs of autism, he nevertheless had an extraordinary mind.[32][33][34][35] Fred Volkmar, a psychiatrist and autism expert at the Yale Child Study Center is skeptical; he says, "There is unfortunately a sort of cottage industry of finding that everyone has Asperger's."[34]

See also

Notes

  1. ↑ 1.0 1.1 1.2 What to say (and not to say) about autism. National Autistic Society (2004). Retrieved on 2007-11-24.
  2. ↑ 2.00 2.01 2.02 2.03 2.04 2.05 2.06 2.07 2.08 2.09 2.10 2.11 2.12 2.13 2.14 Harmon A. "How about not 'curing' us, some autistics are pleading", New York Times, 2004-12-20. Retrieved on 2007-11-07. 
  3. ↑ 3.0 3.1 3.2 3.3 3.4 3.5 3.6 3.7 Saner E. "'It is not a disease, it is a way of life'", The Guardian, 2007-08-07. Retrieved on 2007-08-07. 
  4. ↑ Mitchell C (2003). "Autism e-mailing lists" (PDF). He@lth Inf Internet 33 (1): 3–4.
  5. ↑ Blume H. "Neurodiversity", The Atlantic, September 30, 1998. Retrieved on 2007-11-07. 
  6. ↑ 6.0 6.1 6.2 6.3 6.4 6.5 Trivedi, Bijal (18 June 2005). "Autistic and proud of it". New Scientist (2504): 36.
  7. ↑ Dawson, Michelle. The Misbehaviour of Behaviourists. (18 January 2004). Retrieved on 23 January 2007.
  8. ↑ 8.0 8.1 8.2 8.3 8.4 Gal L. "Who says autism's a disease?", Haaretz, 2007-06-28. Retrieved on 2007-07-16. 
  9. ↑ 9.0 9.1 Else, Liz (14 April 2001). "In a different world". New Scientist (2286): 42.
  10. ↑ Rubin, Sue. Acceptance versus cure. CNN Programs: Presents. Retrieved on 2007-11-27.
  11. ↑ 11.0 11.1 11.2 Shapiro, Joseph (June 26, 2006). Autism Movement Seeks Acceptance, Not Cures. NPR. Retrieved on 2007-11-23.
  12. ↑ 12.0 12.1 Blume H. "Autistics, freed from face-to-face encounters, are communicating in cyberspace", The New York Times, 1997-06-30. Retrieved on 2007-11-08. 
  13. ↑ Blume, Harvey (July 1, 1997). "Autism & The Internet" or "It's The Wiring, Stupid". Media In Transition, Massachusetts Institute of Technology. Retrieved on 2007-11-08.
  14. ↑ Biever C. "Web removes social barriers for those with autism", New Scientist, 2007-06-30. 
  15. ↑ 15.0 15.1 Silberman, Steve (December 2001). Geeks and autism. Wired magazine. Retrieved on 2007-09-23.
  16. ↑ "Yesterday in Parliament: Blair backs campaign for autism awareness", telegraph.co.uk, 2002-01-10. Retrieved on 2007-11-23. 
  17. ↑ PRWeb (November 18, 2004). Declaration From the Autism Community That They Sre (sic) a Minority Group. Press release. Retrieved on 2007-11-23.
  18. ↑ Costello, Mary (January/February 2006). "Autistic Pride" (PDF). InTouch: 26–7. Irish National Teachers' Organisation. Retrieved on 2007-11-24.
  19. ↑ 19.0 19.1 19.2 19.3 19.4 Bazelon E. "What autistic girls are made of", New York Times, 2007-08-05. Retrieved on 2007-08-05. 
  20. ↑ Tsatsanis KD (2003). "Outcome research in Asperger syndrome and autism". Child Adolesc Psychiatr Clin N Am 12 (1): 47–63, vi. PMID 12512398.
  21. ↑ Baron-Cohen S (2006). "The hyper-systemizing, assortative mating theory of autism". Prog Neuropsychopharmacol Biol Psychiatry 30 (5): 865–72. doi:10.1016/j.pnpbp.2006.01.010. PMID 16519981.
  22. ↑ 22.0 22.1 George, Alison (04 June 2005). "Animals and us: Practical passions". NewScientist.com news service (2502): 50.
  23. ↑ Prince-Hughes, D (2004). Songs of the Gorilla Nation: My Journey Through Autism. Harmony. ISBN 1400050588. 
  24. ↑ Heaton P, Wallace GL (2004). "Annotation: the savant syndrome". Journal of child psychology and psychiatry, and allied disciplines 45 (5): 899–911. doi:10.1111/j.1469-7610.2004.t01-1-00284.x. PMID 15225334.
  25. ↑ 25.0 25.1 Carter, Rita (9 October 1999). "Tune in turn off". New Scientist (2207): 30.
  26. ↑ Sutton, Jon (6 November 1999). "You can do it". New Scientist (2211): 15.
  27. ↑ Lane, Megan (2 June, 2004). What Asperger's syndrome has done for us. BBC.co.uk. Retrieved on 2007-11-08.
  28. ↑ Zwerdling, Daniel (April 2002). Kill Them With Kindness. American RadioWorks. Retrieved on 2007-11-08.
  29. ↑ Page, Tim (August 20, 2007). Parallel Play: A lifetime of restless isolation explained. The New Yorker. Retrieved on 2007-11-08.
  30. ↑ Pulitzer-Winner on Living with Asperger's: All Things Considered. NPR (August 13 2007). Retrieved on 2007-11-08.
  31. ↑ Herera, Sue (February 25, 2005). Mild autism has 'selective advantages'. MSNBC. Retrieved on 2007-11-08.
  32. ↑ Sacks, Oliver. Henry Cavendish: An early case of Asperger's syndrome? Neurological Foundation of New Zealand (Reprinted with permission from the American Neurological Association). Retrieved on 2007-06-28.
  33. ↑ Sacks O (2001). "Henry Cavendish: an early case of Asperger's syndrome?". Neurology 57 (7): 1347. PMID 11591871.
  34. ↑ 34.0 34.1 Goode E. "CASES; A Disorder Far Beyond Eccentricity", New York Times, 2001-10-09. Retrieved on 2007-11-26. 
  35. ↑ James I (2003). "Singular scientists". J R Soc Med 96 (1): 36–9. PMID 12519805. Retrieved on 2007-11-26.

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Acknowledgement and Attribution Regarding Sources of Content

Some of the initial content on this page may be incorporated in part from copyleft sources in the public domain including wikis such as Wikipedia and AskDrWiki. Drug information for patients came from the The National Library of Medicine. Infectious disease information may have come from the Centers for Disease Control (CDC). Differential Diagnoses are drawn from clinicians as well as an amalgamation of 3 sources: 1.The Disease Database; 2. Kahan, Scott, Smith, Ellen G. In A Page: Signs and Symptoms. Malden, Massachusetts: Blackwell Publishing, 2004:3; 3. Sailer, Christian, Wasner, Susanne. Differential Diagnosis Pocket. Hermosa Beach, CA: Borm Bruckmeir Publishing LLC, 2002:7 .

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