Societal and cultural aspects of autism

Societal and cultural aspects of autism come into play with recognition of autism, approaches to its support services and therapies, and how autism affects the definition of personhood.[1] The autistic community is divided primarily into two camps; the neurodiversity movement and the autism cure movement. The neurodiversity movement believes autism is a different way of being and advocates against a cure. On the other hand, the autism cure movement advocates for a cure.[2] There are many autism-related events and celebrations; including World Autism Awareness Day, Autism Sunday and Autistic Pride Day. Autism is diagnosed more frequently in males than in females.[3]

Terminology

Although some prefer to use the person-first terminology person with autism,[4] most members of the autistic community prefer autistic person or autistic in formal English, to stress that autism is a part of their identity rather than a disease they have.[2] In addition, phrases like suffers from autism are objectionable to many people.[2][4]

The autistic community has developed abbreviations for commonly used terms, such as:

  • Aspie – a person with Asperger syndrome.[5]
  • Autie – an autistic person. It can be contrasted with aspie to refer to those specifically diagnosed with classic autism.[6]
  • Autistics and Cousins (AC) — a cover term including aspies, auties, and their "cousins", i.e. people with some autistic traits but no formal diagnosis.[7]
  • Curebie – a person with the desire to cure autism. This term is highly derogatory.[2]
  • Neurodiversity – tolerance of people regardless of neurological makeup.[8]
  • Neurotypical (NT) – a person who does not have any neurological disorders. Often used to describe an individual who is not on the autism spectrum.[4]
  • Allistic – a person who is not autistic but may or may not be neurodiverse in other ways, for example, a dyslexic person, or someone with ADHD.[9][10] Originally and commonly, however, it is used satirically to describe those without autism.[11]

Autism spectrum disorders; DSM-V; Diagnostic criteria-Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) is the 2013 update to the American Psychiatric Association's (APA) classification and diagnostic tool. In the United States, the DSM serves as a universal authority for psychiatric diagnosis.

Overview

Autistic 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.[12]

A much smaller proportion of adult autistics marry than the general population.[13] It has been hypothesized that autistic people are subject to assortative mating; they tend to pair with each other and raise autistic offspring.[14] This hypothesis has been publicized in the popular press,[15] but has not been empirically tested.

British psychologist Simon Baron-Cohen said that an increasingly 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-centered, and connect with the nitty-gritty detail of the product or the system."[16]

Autistic savants

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 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. One in 10 autistic people may have notable abilities, but prodigious savants like Stephen Wiltshire are very rare; only about 100 such people have been described/identified in the century since savants were first identified, and there are only about 25 living identified prodigious savants worldwide.[17]

Gender aspects

Women on the autism spectrum

Autism is thought of as a condition mostly affecting males, with males up to four times more likely than females to be diagnosed as autistic or Asperger syndrome. Autistic females 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 females.[3] Autism may express differently in the sexes. Females 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.[3] Autistic girls who have normal intelligence may be more socially disadvantaged than males 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." Autistic girls may suffer additionally by being placed in specialized educational programs, where they will be surrounded by males and further isolated from female social contacts.[3] Although sample sizes are too small to draw firm conclusions, one study suggests that women with autism are less likely than males over the long term to marry, have families, go to college, have careers and live independently. Females may also be different from males in terms of interests; autistic females rarely have interests in numbers or have stores of specialized knowledge.[3] The profile of autism may change as more is understood about females, whose autism may go undiagnosed.[3]

There are many self-advocacy Web sites and peer support pages on the Internet for female autistics, like Autism Women's Network. Some female authors diagnosed with autism spectrum disorders have written autobiographical books about living on the autism spectrum from the female perspective. Below is a list of some non-fictional books written by female authors or aimed specifically at a female audience.

  • Aspergirls by Rudy Simone
  • Girls Growing Up on the Autism Spectrum by Shana Nichols, Gina Moravcik, Samara Tettenbaum
  • Asperger's and Girls by Tony Attwood et al.
  • Parenting Girls on the Autism Spectrum: Overcoming the Challenges and Celebrating the Gifts by Eileen Riley Hall
  • Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life by Liane Holliday Willey
  • M is for Autism is a novel written by the students at Limpsfield Grange about a girl with autism.

Famous female persons diagnosed with autism:

  • Temple Grandin, who has written many books and given many presentations on autism.
  • Daryl Hannah, a popular actress with autism who struggles with anxiety and has done interviews on how it has affected her life.
  • Rosie King, an autistic person from a family with several autistic siblings who have hosted a short documentary called "My Autism and Me" as well as presented on autism at a TED conference.
  • Valerie Paradiz, an autistic woman who has been a strong advocate in designing curricula for autistic people.
  • Donna Williams, an Australian writer, artist, singer-songwriter, screenwriter and sculptor.

In recent years, some people have suggested links between autism and transgender people.[18][19] This issue has not been without controversy, as the issue is open to confusion; does the correlation exist, as some claim, due to an innate characteristic of autism that may also cause unusual discrepancies in sex or gender?[20] Or is it, as others claim, merely the result of exposing a group of people who experience difficulty in abiding by social norms, including those related to gender, to sexism and gender stereotypes?[21]

Relationships with animals

Temple Grandin

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 do not have "complex emotions such as shame or guilt" and they do not think in language. She says that, although not everything about animals is like an autistic person, the similarity is that they think visually and without language. She says people do not make this connection because the study of autism and the study of animal behavior are parallel disciplines involving different individuals.[22] Despite these similarities, the degree to which autistic individuals can be said to think like animals remains undetermined; non-human animals, as well as humans, have evolved cognitive specializations that may or may not share characteristics with other species.[23]

Dawn Prince-Hughes, diagnosed with Asperger's, describes her observations of gorillas in Songs of the Gorilla Nation.[24]

Asperger syndrome and interpersonal relationships

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

Social impact

Asperger syndrome may lead to problems in social interaction with peers. These problems can be severe or mild depending on the individual. People with AS are often the target of bullying behavior. 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, which results in them being sought out by classmates and rejected. People 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 manifest in a lack of play with other children.[25]

The above problems can even arise in the family; given an unfavorable family environment, the child may be subject to emotional abuse. A child, teen, or adult with AS is often puzzled by this mistreatment, unaware of what has been done incorrectly. Unlike with other pervasive development disorders, most persons with AS want to be social, but fail to socialize successfully, which can lead to later withdrawal and asocial behavior, especially in adolescence.[26] 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.[25]

Children with AS often display advanced abilities for their age in language, reading, mathematics, spatial skills, or music—sometimes into the "gifted" range—but this may be counterbalanced by considerable delays in other developmental areas, like verbal and nonverbal communication or some lack of motor coordination. 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 mundane 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).[27]

Employment for those with AS may be difficult. The impaired social skills can be likely to interfere with the interview process – and people with often superior skills can be passed over due to these conflicts with interviewers. Once hired, people with AS may continue to have difficulty with interpersonal communications.[28] Homelessness is very common among people with AS.[28]

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.[29][30] Alexithymia in AS functions as an independent variable relying on different neural networks than those implicated in theory of mind.[29][30] 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.[29][30]

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".[31][32][33] 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.[34]

People with AS report a feeling of being detached against their will from the world around them ("on the outside looking in"). They may have difficulty finding a life partner or getting married due to poor social skills.[13] The complexity and inconsistency of the social world can pose an extreme challenge for individuals with AS. In the UK Asperger's 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[35] (sometimes referred to as Hewitt) and the second was Isles v Ealing Council.[36] The same applies in the United States with the Americans with Disabilities Act, amended in 2008 to include autism spectrum disorders.[37]

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.[38]

It seems the dynamic of role-playing games is especially positive and attractive to the persons on the autism spectrum.[39] The social informations exchanged in these games are explicit, top-down and systematic and they follow a set of shared abstract rules. Baez et al. showed that interpreting the implicit social informations of daily life is difficult for them.[40]

Autism rights movement

Autism rainbow infinity
The rainbow-colored infinity symbol represents the diversity of the autism spectrum as well as the greater neurodiversity movement. Opinions are divided on replacing jigsaw puzzle-piece based symbols to represent autism.[41]

There is some work in the autism community on raising awareness among society, but the very nature of autism could make 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.[42] 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 disagree with the aims of the autism rights movement, saying that the movement overstates the gifts associated with autism, which could jeopardize funding for research and treatment.[42] Many parents of autistic children 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."[42] 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]

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 impaired or damaged; rather, they have a unique set of characteristics that provide them many rewards and challenges, not unlike their non-autistic peers.[5][43][44]

Curing autism is a controversial and politicized issue. The "autistic community" can be divided into several groups. Some seek a cure for autism—sometimes dubbed as pro-cure—while others consider a cure unnecessary or unethical,[2][5][45] or feel that autism conditions are not harmful or detrimental.[2] For example, it may be seen as an evolutionary adaptation to an ecological niche by some environmentalists and the more radical autism rights campaigners.

Autistic culture and community

John Elder Robison talks about Be Different on Bookbits radio.

With the recent increases in autism recognition and new approaches to educating and socializing autistics, an autistic culture has begun to develop. Autistic culture is based on a belief that autism is a unique way of being and not a disorder to be cured.[2] The Aspie world, as it is sometimes called, contains people with Asperger syndrome (AS) and high functioning autism (HFA), and can be linked to three historical trends: the emergence of AS and HFA as labels, the emergence of the disability rights movement, and the rise of the Internet. Autistic communities exist both online and offline; many people use these for support and communication with others like themselves, as the social limitations of autism sometimes make it difficult to make friends, to establish support within general society, and to construct an identity within society.[46]

Because many autistics find it easier to communicate online than in person, a large number of online resources are available.[43] Some autistic individuals 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 tend to have difficulty with.[47][48] It gives autistic individuals a way to communicate and form online communities.[49]

Conducting work, conversation and interviews online in chat rooms, rather than via phone calls or personal contact, help level the playing field for many autistics.[42] 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."[47]

Globally

Autistic people may be perceived differently from country to country. For example, many Africans have spiritual beliefs about psychiatric disorders, which extends into perceived causes of autism.[50] In one survey of Nigerian pediatric or psychiatric nurses, 40% cited preternatural causes of autism such as ancestral spirits or the action of the devil.[50]

Events and public recognition

World Autism Day

Minnesota governor Mark Dayton declared the World Autism Awareness Day on 2 April 2013

World Autism Day, also called World Autism Awareness Day, is marked on 2 April. It was designated by the United Nations General Assembly at the end of 2007.[51] On 2 April 2009, activists left 150 strollers near Central Park in New York City to raise awareness that one in 150 children is estimated to be autistic.[52] There are many celebration activities all over the world on 2 April – World Autism Day. "Autism knows no geographic boundaries — it affects individuals and families on every continent and in every country," said Suzanne Wright, co-founder of the group Autism Speaks. "The celebration of World Autism Awareness Day is an important way to help the world better understand the scope of this health crisis and the need for compassion and acceptance for those living with autism. This remarkable day — the first of many to come — promises to be a time of great hope and happiness as we work to build a global autism community."[53]

Light It Up Blue

In 2010, Autism Speaks launched the Light It Up Blue initiative.[54] Light It Up Blue sees prominent buildings across the world – including the Empire State Building in New York City and the CN Tower in Toronto, Ontario, Canada – turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day.[55]

Autism Sunday

Autism Sunday is a global Christian event, observed on the second Sunday of February. It is supported by church leaders and organisations around the world. The event started as a small idea in the front room of British autism campaigners, Ivan and Charika Corea. It is now a huge event celebrated in many countries. Autism Sunday was launched in London in 2002 with a historic service at St. Paul's Cathedral.[56]

Autism Awareness Year

Autism awareness ribbon - not supported by many people with autism spectrum disorders.[57]

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.[58] Autism Awareness Year was led by the British Institute of Brain Injured Children, Disabilities Trust, The Shirley Foundation, National Autistic Society, Autism London and 800 organizations in the United Kingdom. It had the personal backing of British Prime Minister Tony Blair.[59] This was the first ever occasion of partnership working on autism on such a huge scale. 2002 Autism Awareness Year helped raise awareness of the serious issues concerning autism and Asperger's Syndrome across the United Kingdom.[60] A major conference, Autism 2002 was held at the King's Fund in London with debates in the House of Commons and the House of Lords in Westminster. Autism awareness ribbons were worn to mark the year.[61]

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.'"[5] But the autism community is split over this issue, and some view this notion as radical.[5]

Autistic Pride Day

Autistic Pride Day is an Aspies for Freedom initiative celebrated on 18 June each year. It is a day for celebrating the neurodiversity of people with autism. Modeled after gay pride events, their effort are often compare their efforts to the civil rights and LGBT social movements.[5][62][63]

Autistics Speaking Day

Autistics Speaking Day (ASDay), 1 November, is a self-advocacy campaign run by people with autism to raise awareness and challenge negative stereotypes about autism by speaking for themselves and sharing their stories. The first one was held in 2010.[64] According to one of the founders, Corina Becker, the main goal of ASDay is "to acknowledge our difficulties while sharing our strengths, passions, and interests."[65] The idea for the event developed out of opposition to a "Communication Shutdown" fundraising campaign led by Autism Speaks that year, which had asked for participants to "simulate" having autism by staying away from all forms of online communication for one day.[66][67]

Autism Acceptance Project

In 2006 the Autism Acceptance Project was founded by Estée Klar, the mother of an autistic child, with help from an autistic advisory and board.[68] The project’s mission statement is, “The Autism Acceptance Project is dedicated to promoting acceptance of and accommodations for autistic people in society.” The project is primarily supported by autistic people and their supporters. The goal is to create a positive perspective of autism and to accept autism as a part of life with its trials and tribulations. The project is also working to enable autistic people to gain the right to advocate for themselves (along with their supporters) in all policy decision formats from government to a general committee. By providing an abundance of resources, the project is able to reach a multitude of audiences using a Web site along with lectures and exhibitions.[68]

Autism Acceptance Day

In 2011 the first Autism Acceptance Day celebrations were organized by Paula Durbin Westby, as a response to traditional “Autism Awareness” campaigns which the Autistic community found harmful and insufficient.[69][70] Autism Acceptance Day is now held every April.[69] "Awareness" focuses on informing others of the existence of autism while "acceptance" pushes towards validating and honoring the autism community. By providing tools and educational material people are encouraged to embrace the challenges autistic people face and celebrate their strengths. Rather than making autism into a crippling disability, acceptance integrates those on the autistic spectrum into everyday society. Instead of encouraging people to wear blue as Autism Awareness Day does, Autism Acceptance Day encourages people to wear red.[71]

Autreat

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 around 2005.[72]

Twainbow

Twainbow is an advocacy organization that provides awareness, education, and support for autistic people who identify as lesbian/gay/bisexual/transgender (LGBT).[73] According to its founder, "Twainbow is a portmanteau of 'twain' (meaning 'two') and 'rainbow.'" Those who are both LGBT and autistic live under two rainbows—the rainbow flag and the autism spectrum." The company also introduced an LGBT-autism Gay Pride flag representing the population.[74][75]

Scholarship

Autism spectrum disorders received increasing attention from social-science scholars in the early 2000s, with the goals of improving support services and therapies, arguing that autism should be tolerated as a difference not a disorder, and by how autism affects the definition of personhood and identity.[1] Sociological research has also investigated how social institutions, particularly families, cope with the challenges associated with autism.[76]

Media portrayals

Much of the public perception of autism is based on its portrayals in biographies, movies, novels, and TV series. Many of these portrayals have been inaccurate, and have contributed to a divergence between public perception and the clinical reality of autism.[77] For example, in the movie Mozart and the Whale (2005), the opening scene gives four clues that a leading character has Asperger syndrome, and two of these clues are extraordinary savant skills. The savant skills are not needed in the film, but in the movies savant skills have become a stereotype for the autism spectrum, because of the incorrect assertion that most autistic people are savants.[78]

Some works from the 1970s have autistic characters, who are rarely labeled.[79] In contrast, in the BBC2 television miniseries The Politician's Husband (2013), the impact of Noah Hoynes' Aspergers on the boy's behavior and on his family, and steps Noah's loved ones take to accommodate and address it, are prominent plot points in all three episodes.

Popular media have depicted special talents of some children with autism, including exceptional abilities as seen in the movie Rain Man (1988).[80]

Since the 1970s, fictional portrayals of people with autism, Asperger's syndrome, and other ASCs have become more frequent.[79] Public perception of autism is often based on these fictional portrayals in novels, biographies, movies, and TV series. These depictions of autism in media today are often made in a way that brings pity to the public and their concern of the topic, because their viewpoint is never actually shown, leaving the public without knowledge of autism and its diagnosis.[81][78] Portrayals in the media of characters with atypical abilities (for example, the ability to multiply large numbers without a calculator) may be misinterpreted by viewers as accurate portrayals of all autistic people and of autism itself.[82]

Notable individuals

Some notable figures such as Temple Grandin, a food animal handling systems designer and author,[83] and Tim Page, a Pulitzer Prize-winning critic and author[84][85] are autistic.

There have been published many speculative retrospective diagnoses of autism of historical figures who may have had autism spectrum disorders. For example, Henry Cavendish, a British natural philosopher and scientist, is believed by some to have been autistic. George Wilson, a notable chemist and physician, wrote a book about Cavendish entitled The Life of the Honourable Henry Cavendish (1851), which provides a detailed description that indicates Cavendish may have exhibited many classic signs of autism.[86][87][88][89] 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."[88]

See also

References

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Further reading

  • Julia Bascom (editor). Loud Hands: Autistic People, Speaking. Washington, DC: Autistic Self Advocacy Network, 2012. ISBN 978-1938800023
  • Davidson J (2008). "Autistic culture online: virtual communication and cultural expression on the spectrum". Soc Cult Geogr. 9 (7): 791–806. doi:10.1080/14649360802382586.
  • Temple Grandin. Thinking in Pictures, Expanded Edition: My Life with Autism, New York, New York: Vintage, 2011. ISBN 978-1935274216
  • Nadesan, Majia (2005). Constructing Autism: Unravelling the "Truth" and Discovering the Social. London: Routledge. ISBN 0-415-32180-8.
  • Rossetti Z, Ashby C, Arndt K, Chadwick M, Kasahara M (2008). "'I like others to not try to fix me': agency, independence, and autism". Intellect Dev Disabil. 46 (5): 364–75. doi:10.1352/2008.46:364-375. PMID 19090638.
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