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 worthy of consideration, 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.

Contents

[edit] 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:

  • Aspie – a person with Asperger syndrome.[3]
  • Autie – an autistic person. It can be contrasted with aspie to refer to those specifically diagnosed with classic autism.[4]
  • Curebie – a person with the desire to cure autism. This term is mildly derogative.[2]
  • Neurodiversity – tolerance of people regardless of neurological wiring.[5]
  • Neurotypical (NT) – a person not on the autism spectrum.[1]

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

[edit] Politics

Autism rights movement
Issues
Karen McCarron
Judge Rotenberg Educational Center
Organizations
Aspies For Freedom
Autism Network International
Events
Autistic Pride Day · Autreat
Philosophy
Sociological and cultural aspects
Neurodiversity · Neurotypical
People
Michelle Dawson · Temple Grandin
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]

Curing autism is a controversial and politicized issue. What some call the "autistic community" has splintered into several strands. Many seek a cure for autism—sometimes dubbed as pro-cure. Many others consider a cure unnecessary or unethical.[2][3][7]

[edit] 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, often 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.[8] 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.[8] 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.[9][10] It gives autistic individuals a way to communicate and form online communities.[11] 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".[9]

Online interaction has disadvantages. Overreliance on the Internet for social interaction can lead to reduction in already-limited human contact. Much misinformation and fraud is available online. Based on unreliable information, people diagnose themselves with Asperger syndrome and related conditions, and then present themselves as individuals with genuine ASD. Because people with ASD often interpret sources literally, it may be particularly difficult for them to tell whether an online correspondent is lying.[4]

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.[12]

[edit] Recognition

[edit] 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 a 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.[13] 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]

[edit] 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.[14]

“ 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.

 ”

[edit] 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.[8][3][15]

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.[16]

[edit] Asperger syndrome and interpersonal relationships

Individuals diagnosed with Asperger syndrome (AS) may develop problems in their abilities to successfully engage in interpersonal relationships.

[edit] Social impact

Asperger syndrome may lead to problems in social interaction with peers. These problems can be severe or mild depending on the individual. Children with AS are often the target of bullying at school due to their idiosyncratic behavior, precise language, unusual interests, and impaired ability to perceive and respond in socially expected ways to nonverbal cues, particularly in interpersonal conflict. Children with AS may be overly literal, and may have difficulty interpreting and responding to sarcasm, banter, or metaphorical speech. Difficulties with social interaction may also be manifest in a lack of play with other children.[17]

The above problems can even arise in the family; given an unfavorable family environment, the child may be subject to emotional abuse. A child or teen with AS is often puzzled by this mistreatment, unaware of what has been done incorrectly. Unlike other pervasive development disorders, most children with AS want to be social, but fail to socialize successfully, which can lead to later withdrawal and asocial behavior, especially in adolescence.[18] At this stage of life especially, they risk being drawn into unsuitable and inappropriate friendships and social groups. People with AS often interact better with those considerably older or younger than themselves, rather than those within their own age group.[17]

Children with AS often display advanced abilities for their age in language, reading, mathematics, spatial skills, and/or music—sometimes into the "gifted" range—but this may be counterbalanced by considerable delays in other developmental areas. This combination of traits can lead to problems with teachers and other authority figures. A child with AS might be regarded by teachers as a "problem child" or a "poor performer." The child’s extremely low tolerance for what they perceive to be ordinary and mediocre tasks, such as typical homework assignments, can easily become frustrating; a teacher may well consider the child arrogant, spiteful, and insubordinate. Lack of support and understanding, in combination with the child's anxieties, can result in problematic behavior (such as severe tantrums, violent and angry outbursts, and withdrawal).[19]

[edit] Difficulties in relationships

Two traits sometimes found in AS individuals are mind-blindness (the inability to predict the beliefs and intentions of others) and alexithymia (the inability to identify and interpret emotional signals in oneself or others), which reduce the ability to be empathetically attuned to others.[20][21] Alexithymia in AS functions as an independent variable relying on different neural networks than those implicated in theory of mind.[20][21] In fact, lack of Theory of Mind in AS may be a result of a lack of information available to the mind due to the operation of the alexithymic deficit.[20][21]

A second issue related to alexithymia involves the inability to identify and modulate strong emotions such as sadness or anger, which leaves the individual prone to "sudden affective outbursts such as crying or rage"[22][23][24] According to Tony Attwood, the inability to express feelings using words may also predispose the individual to use physical acts to articulate the mood and release the emotional energy.[25]

People with AS report a feeling of being unwillingly detached from the world around them. They may have difficulty finding a life partner or getting married due to poor social skills.[26] Individuals with AS will need support if they desire to make connections on a personal level. The complexity and inconsistency of the social world can pose an extreme challenge for individuals with AS. In the UK Aspergers is covered by the Disability Discrimination Act; those with AS who get treated badly because of it may have some redress. The first case was Hewett v Motorola 2004[27] (sometimes referred to as Hewitt) and the second was Isles v Ealing Council.[28]

The intense focus and tendency to work things out logically often grants people with AS a high level of ability in their field of interest. When these special interests coincide with a materially or socially useful task, the person with AS can lead a profitable career and a fulfilled life. The child obsessed with a specific area may succeed in employment related to that area.[29] People with AS have also served in the military. Although AS is generally a disqualifier for military service, the individual can be qualified for enlistment if he or she has not required special accommodations or treatment for the past year.[30] More research is needed on adults with AS.[31]

[edit] 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.[32] 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.[32] 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.[32] 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.[32] The profile of autism may change as more is understood about girls, whose autism may go undiagnosed.[32]

[edit] Adults

Communication and social problems often cause difficulties in many areas of an autistic adult's life. A 2008 study found that adults with ASD commonly experience difficulty starting social interactions, longing for greater intimacy, a profound sense of isolation, and effort to develop greater social or self awareness.[33]

A much smaller proportion of adult autistics marry than the general population.[26] 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.[34] This hypothesis has been publicized in the popular press,[12] 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".[35]

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.[citation needed]

[edit] Animals

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".[36] 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.[36] However, the special cognitive abilities of some animal species are often adaptive specializations that have little or no relationship to autistic savant skills, and animals, like nonautistic humans, process sensory information according to rules using the left hemisphere of the brain.[37]

Dawn Prince-Hughes, diagnosed with Asperger's, describes her observations of gorillas in Songs of the Gorilla Nation.[38]

[edit] Literature

Some works from the 1970s have autistic characters, who are rarely labeled.[39] Works by people with autism today go back to the first published work by Temple Grandin in the 1980s.

Autistic characters also appear in many works by non-autistic authors. Mark Haddon's 2003 novel The Curious Incident of the Dog in the Night-time, has been celebrated for its immersion into the world of its teenage autistic narrator.[39] The Speed of Dark, by Elizabeth Moon, explores the possibility of a cure for autism and its effect on autistics. 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.

[edit] Savants

Main article: Autistic savant

An autistic savant is an autistic person with extreme talent in one or more areas of study. Although there is a common association between savant syndrome 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.[40] One in ten autistic people may have notable abilities, but prodigious 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 prodigious savants worldwide.[41] 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."[41] 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.[42]

[edit] 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,[43] Temple Grandin, a food animal handling systems designer and author,[44] Tim Page, a Pulitzer Prize-winning critic and author[45][46] and Vernon L. Smith, a Nobel Laureate in economics.[47]

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.[48][49][50][51] 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."[50]

[edit] See also

[edit] Notes

  1. ^ a b c What to say (and not to say) about autism. National Autistic Society (2004). Retrieved on 2007-11-24.
  2. ^ a b c d e f g h Harmon A. "How about not 'curing' us, some autistics are pleading", New York Times, 2004-12-20. Retrieved on 2007-11-07. 
  3. ^ a b c d e f Saner E. "'It is not a disease, it is a way of life'", The Guardian, 2007-08-07. Retrieved on 2007-08-07. 
  4. ^ a b Mitchell C (2003). "Autism e-mailing lists". He@lth Inf Internet 33 (1): 3–4. 
  5. ^ Blume H. "Neurodiversity", The Atlantic, September 30, 1998. Retrieved on 2007-11-07. 
  6. ^ a b c d 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. ^ a b c Shapiro, Joseph (June 26, 2006). Autism Movement Seeks Acceptance, Not Cures. NPR. Retrieved on 2007-11-23.
  9. ^ a b 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. 
  10. ^ 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.
  11. ^ Biever C. "Web removes social barriers for those with autism", New Scientist, 2007-06-30. 
  12. ^ a b Silberman, Steve (December 2001). Geeks and autism. Wired magazine. Retrieved on 2007-09-23.
  13. ^ "Yesterday in Parliament: Blair backs campaign for autism awareness", telegraph.co.uk, 2002-01-10. Retrieved on 2007-11-23. 
  14. ^ PRWeb (November 18, 2004). "Declaration From the Autism Community That They Sre (sic) a Minority Group". Press release. Retrieved on 2007-11-23.
  15. ^ Costello, Mary (January/February 2006). "Autistic Pride" (PDF). InTouch: 26–7. Irish National Teachers' Organisation. 
  16. ^ Cite error: Invalid <ref> tag; no text was provided for refs named Gal
  17. ^ a b Asperger syndrome: what is it?. National Autistic Society (2003). Retrieved on 2008-03-02.
  18. ^ Stoddart, Kevin P. (Editor) (2005), p. 22.
  19. ^ Myles, Brenda Smith; Southwick, Jack (2005). "Asperger Syndrome and Difficult Moments". Shawnee Mission, Kansas: Autism Asperger Publishing Co. ISBN 1-931282-70-6, pp. 14–17
  20. ^ a b c Moriguchi Y, Decety J, Ohnishi T, Maeda M, Matsuda H, Komaki G (2007). "Empathy and judging other’s pain: An fMRI study of alexithymia". Cerebral Cortex
  21. ^ a b c Bird J, Silani G, Brindley R, Singer T, Frith U, Frith C. Alexithymia In Autistic Spectrum Disorders: and fMRI Investigation (2006)
  22. ^ Nemiah CJ, Freyberger H, Sifneos PE (1970). "Alexithymia: A View of the Psychosomatic Process" in O.W.Hill (1970) (ed), Modern Trends in Psychosomatic Medicine, Vol-2, pp. 432–33
  23. ^ Krystal H (1988). Integration and Self-Healing: Affect, Trauma, Alexithymia, p. 246; McDougall J (1985). Theaters of the Mind pp. 169–70
  24. ^ Taylor GJ, Parker JDA, Bagby RM (1997). Disorders of Affect Regulation- Alexithymia in Medical and Psychiatric Illness, pp. 246–47
  25. ^ Attwood, Tony (2006). The Complete Guide to Asperger's Syndrome, Jessica Kingsley Pub. ISBN-1843104954 p. 130, 136
  26. ^ a b Tsatsanis KD (2003). "Outcome research in Asperger syndrome and autism". Child Adolesc Psychiatr Clin N Am 12 (1): 47–63, vi. doi:10.1016/S1056-4993(02)00056-1. PMID 12512398. 
  27. ^ List of Cases / Hewett v Motorola Ltd, EAT 2004. Disclaw publishing. Retrieved on 2008-02-21.
  28. ^ Union member discriminated against. Unison, 2006-02-14. Retrieved on 2008-02-21.
  29. ^ Stoddart, Kevin P. (2005), p. 24. Stoddart notes: "Adults who have succeeded in keeping employment may be found in vocations that rely on a circumscribed area of knowledge."
  30. ^ Meyer, Roger N (2007-12-02). Asperger Syndrome in Military Service. Aspires. Retrieved on 2007-12-29.
  31. ^ Stoddart, Kevin P. (2005), p. 239.
  32. ^ a b c d e Bazelon E. "What autistic girls are made of", New York Times, 2007-08-05. Retrieved on 2007-08-05. 
  33. ^ Müller E, Schuler A, Yates GB (2008). "Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities". Autism 12 (2): 173–90. doi:10.1177/1362361307086664. PMID 18308766. 
  34. ^ 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. 
  35. ^ Else, Liz (14 April 2001). "In a different world". New Scientist (2286): 42. 
  36. ^ a b George, Alison (04 June 2005). "Animals and us: Practical passions". NewScientist.com news service (2502): 50. 
  37. ^ Vallortigara G, Snyder A, Kaplan G, Bateson P, Clayton NS, Rogers LJ (2008). "Are animals autistic savants". PLoS Biol 6 (2): e42. doi:10.1371/journal.pbio.0060042. PMID 18288892. 
  38. ^ Prince-Hughes, D (2004). Songs of the Gorilla Nation: My Journey Through Autism. Harmony. ISBN 1400050588. 
  39. ^ a b Murray S (2006). "Autism and the contemporary sentimental: fiction and the narrative fascination of the present". Lit Med 25 (1): 24–45. doi:10.1353/lm.2006.0025. PMID 17040083. 
  40. ^ 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. 
  41. ^ a b Carter, Rita (9 October 1999). "Tune in turn off". New Scientist (2207): 30. 
  42. ^ Sutton, Jon (6 November 1999). "You can do it". New Scientist (2211): 15. 
  43. ^ Lane, Megan (2 June 2004). What Asperger's syndrome has done for us. BBC.co.uk. Retrieved on 2007-11-08.
  44. ^ Zwerdling, Daniel (April 2002). Kill Them With Kindness. American RadioWorks. Retrieved on 2007-11-08.
  45. ^ Page, Tim (August 20, 2007). Parallel Play: A lifetime of restless isolation explained. The New Yorker. Retrieved on 2007-11-08.
  46. ^ Pulitzer-Winner on Living with Asperger's: All Things Considered. NPR (August 13, 2007). Retrieved on 2007-11-08.
  47. ^ Herera, Sue (February 25, 2005). Mild autism has 'selective advantages'. MSNBC. Retrieved on 2007-11-08.
  48. ^ 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.
  49. ^ Sacks O (2001). "Henry Cavendish: an early case of Asperger's syndrome?". Neurology 57 (7): 1347. PMID 11591871. 
  50. ^ a b Goode E. "CASES; A Disorder Far Beyond Eccentricity", New York Times, 2001-10-09. Retrieved on 2007-11-26. 
  51. ^ James I (2003). "Singular scientists". J R Soc Med 96 (1): 36–9. PMID 12519805. 

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