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Tuesday, February 17, 2015

Autism rights movement



From Wikipedia, the free encyclopedia
Autism rainbow infinity
The rainbow-colored infinity symbol represents the diversity of the autism spectrum as well as the greater neurodiversity movement.

The autism rights movement (ARM), also known as the autistic culture movement, is a social movement within the neurodiversity and disability rights movements that encourages autistic people, their caregivers and society to adopt a position of neurodiversity, accepting autism as a variation in functioning rather than a mental disorder to be cured.[1] The ARM advocates a variety of goals including a greater acceptance of autistic behaviors;[2] therapies that teach autistic individuals coping skills rather than therapies focused on imitating behaviors of neurotypical peers;[3] the creation of social networks and events that allow autistic people to socialize on their own terms;[4] and the recognition of the autistic community as a minority group.[5]

Autism rights or neurodiversity advocates believe that the autism spectrum is genetic and should be accepted as a natural expression of the human genome. This perspective is distinct from two other likewise distinct views: (1) the mainstream perspective that autism is caused by a genetic defect and should be addressed by targeting the autism gene(s) and (2) the perspective that autism is caused by environmental factors like vaccines and pollution and could be cured by addressing environmental causes.[1]

The movement is controversial. There are a wide variety of both supportive and critical opinions about the movement among people who are autistic or associated with autistic people. A common criticism leveled against autistic activists is that the majority of them are high-functioning or have Asperger syndrome and do not represent the views of all autistic people,[6] although some prominent figures in the movement (such as Amy Sequenzia[7]) are nonverbal and have been labeled as low-functioning.

History

Jim Sinclair was the first individual to communicate the anti-cure or autism rights perspective in the late 1980s.[1] In 1992, Sinclair co-founded the Autism Network International, an organization that publishes newsletters "written by and for autistic people". Other individuals involved in the creation of the ANI were Donna Williams and Kathy Grant, two autistic individuals who knew Sinclair through pen pal lists and autism conferences. The first issue of the ANI newsletter, Our Voice, was distributed online in November 1992, to an audience of mostly neurotypical professionals and parents of young autistic children. The number of autistics in the organization grew slowly, over the years, and it eventually became a communication network for like-minded autistics.[8]

In 1996, a yearly retreat known as Autreat was established. Autreat is a United States retreat and conference hosted by the autism rights organization Autism Network International, specifically for autistic people.[9] As of 2012, Autreat has been held every year, except for 2001.

In 2004, Michelle Dawson challenged applied behavior analysis (ABA) on ethical grounds. She testified in Auton v. British Columbia against the required government funding of ABA.[10] That same year The New York Times covered the autism rights perspective by publishing Amy Harmon's article, "How about not curing us? Some autistics are pleading."[11]

Aspies For Freedom (AFF) was founded in 2004, and established June 18 as Autistic Pride Day starting in 2005. AFF was also instrumental in initiating protests against the National Alliance for Autism Research, Cure Autism Now, and the Judge Rotenberg Center.[11]

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.[12] The project affiliated with The Autistic Self Advocacy Network and other activist groups in North America and was one of the first to sign the petition against the New York Child Study Campaign. It is also recognized by ASAN in a letter to the United Nations of being one of the first autism organizations to promote autism acceptance. From 2005-8, TAAProject organized arts-based events to show the public an active autism rights movement that burgeoned online. In addition, it sponsored the controversial Joy of Autism: Redefining Ability and Quality of Life events and lectures in Toronto, featuring dozens of autistic artists and speakers including Jim Sinclair, Michelle Dawson, Phil Schwartz, Morton Ann Gernsbacher, Larry Bissonnette and more. In 2014, TAAProject worked with York University to bring non-verbal autistic self-advocates who type to communicate, Larry Bissonnette and Tracy Thresher to discuss autism and screen the film Wretches & Jabberers. Estee Klar continues her work also in Critical Disability Studies (PhD program) at York University in Toronto.

In 2008, the Autistic Self Advocacy Network (ASAN) succeeded in halting two ad campaigns it stated were demeaning to autistics. The first ads were a series published by the NYU Child Study Center that appeared in the form of ransom notes. One read, "We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning", and was signed, "Autism".[1] The second ads were published by PETA and featured a bowl of milk with the left over bits of cereal forming a frowning face. The text read, "Got autism?" and was meant to advertise what PETA claims is a link between autism and the casein in milk. Phone calls, letters and petitions organized by ASAN led to the removal of these ads.[13][14]

The rise of the Internet has provided more opportunities for autistic individuals to connect and organize. Considering the geographical distance, communication and speech patterns of autistic individuals, and the domination of neurotypical professionals and family members in established autism organizations, the Internet has provided an invaluable space for members of the movement to organize and communicate.[5][8]

Perspectives

The seven-colored heptagon of ASAN
The Autistic Self-Advocacy Network (ASAN) uses a seven-colored heptagonal symbol to represent both the autistic spectrum and the idea of diversity.

Some autistic rights activists believe some characteristics described as being autistic traits are actually misconceptions.[15] Michelle Dawson has disputed the belief that 75% of autistic people have low intelligence.[10] Psychiatrist Laurent Mottron of Hôpital Rivière-des-Prairies in Montreal says that autistic people often score much higher on a nonverbal test of abstract reasoning than on a standard IQ test.[16] Some autistics have claimed that non-autistics are insensitive to their perspectives, and write parodies based on this, addressing what they call allism (a lack of autism) as a mental disorder characterized by lack of "theory of other minds", something that has subsequently been proven to be true of Simon Baron-Cohen, one of the originators of the original Theory of Mind hypothesis.[17][18][19]

Jim Sinclair, who has also been a target of similar criticism from very early on, goes into detail about "the politics of opposition to self-advocacy".[20]

The controversy has erupted on autism e-mail lists, where "curebie" is used as a derogatory term for parents who are portrayed as "slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating".[11] These parents respond that this attitude shows "a typical autistic lack of empathy by suggesting that they should not try to help their children". Lenny Schafer said that the autism-like lack of empathy of anti-cure activists prevent them from seeing what is in the hearts of pro-cure advocates.[21]

Autism is not a disorder


Many autism rights activists object to the use of jigsaw pieces to represent autism, since they do not view autism as a problem to be solved.[22]

Autism is classified by psychologists as a disorder, rather than the variation in functioning preferred by supporters of neurodiversity, with an attendant focus on the burden placed on society in caring for autistic individuals. Caring for autistic individuals has been compared to treating a patient with cancer, though extended over the duration of a normal lifespan.[23] Autistic children have also been described as being held hostage to a psychiatric disorder.[24] Others have used the term "mad child disease" to describe autism,[25] which some autistic individuals and their parents have found highly offensive.[26] Margaret Somerville, founding director of the McGill Centre for Medicine, Ethics and Law, said that with activism there is a direct goal and it is sometimes necessary to sacrifice complexity and nuance to make a point, but some autistic activists don't believe desperation justifies the rhetoric.[10] Bennett L. Leventhal said he understands concern about comparing autistic children to victims of hostage but thinks the campaigns make the point that these are real diseases that will consume children if untreated.[24] Autistic rights activists also reject terming the reported increase in autism diagnoses as an 'epidemic' since the word implies autism is a disease.[27]

Attempts have been made to place a figure on the financial cost of autism, addressed to both scholarly[28] and popular audiences.[29] These efforts have been criticized by some autism rights advocates, who compare them to similar calculations about "persons with bad heredity" made by the eugenics movement in the early 20th century—a movement currently in disrepute.[30] Michelle Dawson has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals,[31] and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society.[31][32]

The autism rights perspective shifts the focus from the deficits and problems associated with autism to the talents and contributions, up to and including savants like Stephen Wiltshire, who is believed to have perfect recall.[33] Retrospective diagnoses of historical figures such as Einstein and Tesla (who lived before autism diagnosis was widespread or even existed) are used as examples of major contributions to art, science, and culture.[34][35] Dr. Temple Grandin has speculated that an autistic caveman probably invented the first stone spear, and that if autism were eliminated, society would lose most of its scientists, musicians, and mathematicians.[36][37]

Some autistic activists say it is not easy to distinguish between high and low functioning.[11] Some autistic individuals, in contrast, are supportive of the distinction between the low and high functioning labels as well as autism and Asperger syndrome, and believe it is important in helping individuals get proper consultation and treatment.[38]

Autistic people have their own culture

Some autistic activists suggest that life with Autism is very much like being born among people who speak a different language, have a religion or philosophy one does not share and live a lifestyle that feels alien. To put it differently, Autists have an individual culture that's often very different from their environment.[citation needed]

Autistic people require inclusion in the autism debate

A common theme expressed among autism rights activists and neurodiversity groups is that they are different from parent- and professional- led organizations and conferences that dominate the autism scene. Michelle Dawson criticizes the norm of allowing parents to speak on behalf of their autistic children at conferences to the exclusion of autistics. "With the happy and proud collaboration of governments, courts, researchers, service providers, and funding bodies," she says, "parents have succeeded in removing autistics from the vicinity of any important discussions or decisions." This exclusion results in policy and treatment decisions being made solely by individuals who do not directly experience autism.[23]

Jim Sinclair states that autism conferences are traditionally geared toward neurotypical parents and professionals, and that to an autistic person they may be quite "hostile" in terms of sensory stimulation and rigidity.[8]

In defiance of the common complaint that anti-cure advocates' ability to articulate complex opinions in writing—which some critics see as being impossible for autistic people[39]—autistic adults such as Amelia Baggs use their own writing and videos to demonstrate that it is possible for severely disabled autistics to be autism rights advocates.[40] She says that when the critics assume that intelligent and articulate autistic people do not have difficulties like self-injurious behavior and difficulty with self-care, they affect the opinions of policy makers and make it more difficult for intelligent and articulate autistic people to get services. Baggs cites an example of an autistic person who was denied services when it was discovered that she could type.[41]

Autism therapy is often unethical

Aspies For Freedom stated that the most common therapies for autism are unethical, since they focus on extinguishing harmless stimming, forcing eye contact and breaking routines. AFF argued that ABA therapy and restriction of stimming "and other autistic coping mechanisms" are mentally harmful, that aversion therapy and the use of restraints are physically harmful, and that alternative treatments like chelation are dangerous.[3] Michelle Dawson, a Canadian autism self-advocate, testified in court against government funding of ABA therapy.[39] An autistic person named Jane Meyerding criticized therapy which attempts to remove autistic behaviors because she says that the behaviors that the therapy tries to remove are attempts to communicate.[11]

Autism genes should not be eliminated

Since those in the autism rights movement see autism as a natural human variation and not a disorder, they are opposed to attempts to eliminate autism. In particular, there is opposition to prenatal genetic testing of autism in unborn fetuses, which some believe might be possible in the future (see Heritability of autism). Some worry that this can prevent autistic people from being born.[11] On February 23, 2005 Joseph Buxbaum of the Autism Genome Project at the Icahn School of Medicine at Mount Sinai said there could be a prenatal test for autism within 10 years.[42] However, the genetics of autism have proven to be extremely complex.[43] In any case, the Autistic Genocide Clock was started in response to this, which counts down to 10 years after Buxbaum made this announcement.[44] The public has started to debate the ethics involved in the possible elimination of a genotype that has liabilities and advantages, which may be seen as tampering with natural selection.[45]

Some people lament that professionals, such as social workers, may discourage autistics from having children.[46] Some are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born"[11] and that most autistic fetuses would be aborted if prenatal tests for autism are developed.[47]

The notion of "curing" autism is offensive

"Curing" or "treating" autism is a controversial and politicized issue. Doctors and scientists are not sure of the cause(s) of autism yet many organizations like Autism Research Institute and Autism Speaks advocate researching a cure. Members of the various autism rights organizations view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure.[11][47]
Some advocates believe that common therapies for the behavioral and language differences associated with autism, like applied behavior analysis, are not only misguided but also unethical.[48]

The "anti-cure perspective" endorsed by the movement is a view that autism is not a disorder, but a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome.[11] Advocates of this perspective believe that autism is a unique way of being that should be validated, supported and appreciated rather than shunned, discriminated against or eliminated.[11][49] They believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated and that efforts to eliminate autism should not be compared, for example, to curing cancer but instead to the antiquated notion of curing left-handedness.[11][39] The ARM is a part of the larger disability rights movement, and as such acknowledges the social model of disability.[50] Within the model, struggles faced by autistic people are viewed as discrimination rather than deficiencies.

John Elder Robison was a discussant for the Autism Social, Legal, and Ethical Research Special Interest Group at the 2014 International Meeting for Autism Research (IMFAR). He ended up taking the group to task, stating that the autism science community is headed for disaster if it does not change course on several factors – and noting for context the larger size of the US autistic community in proportion to other minority groups such as Jewish or Native American communities. Robison asserted that autistic people need to be the ones providing oversight and governance for autism research. He condemned the use of words like “cure.” He pointed out that researchers’ explicit or implicit efforts to eradicate autistic people is a formula for disaster and needs to stop. And he affirmed that memoirs and narratives written by autistic people are more trustworthy than writing about autism by nonautistics.[51]

Jim Sinclair, a leader in the movement, argues that autism is essential to a person, not a disease secondary to the person. Sinclair says that wishing that an autistic person be cured is equivalent to wishing that they disappear and another completely different person exist in their place.[52] Visions for a future where autism has been eradicated, Sinclair believes, is the desire to end the autistic culture.[52]

Some movement members with Asperger syndrome, who do not have the language differences typical of autistic individuals, believe their way of life should be respected and they should be left alone completely. Other members agree that autistics should not be made to act exactly like everyone else, but that they should receive therapy to help them learn to communicate in innovative ways or regulate emotions.[10][53] Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, expressed the latter view.[54] Baron-Cohen said:[47]

Holist Manifesto

Brain.HE is a non-commercial/non-profit-making resource website for students and staff in higher education. They are hosted by the London School of Economics' Neurodiversity Team and are supported by the LSE Annual Fund.[55] BRAIN.HE supports a manifesto for neurodiversity that's known as the holist manifesto and is based on principles of the social model of disability and neurodiversity.[56]

Principles

  1. We are all neurodiverse.
  2. The dyslexic experience is but one experience among many that have the same underlying cause: a systemic intolerance to holistic.
  3. Without us there would be an impoverished world for all (Newton, Einstein, Leonardo de Vinci, Picasso, Churchill, Tarantino, Spielberg, Disney, Branson, Ben Elton, John Lennon).
  4. We are entitled to be different and to learn and work differently.
  5. All of us with specific learning differences are disabled by an intolerant world. Changing it requires solidarity among us all.
  6. Changing an intolerant world changes it for the better for all.

Demands

  1. There must be no policies about neurodiversity, except those developed by and with those of us most affected by the policy implementation
  2. There should be no teaching intervention without representation- we have had enough of the tyranny of ‘experts’.
  3. There needs to be a zero tolerance to linear measures of humanity and the insistence on linear sequential teaching and communication strategies
  4. The future of the world depends on allowing us to be different and to learn and work differently. This involves:
    • High interest learning based on passionate interest, rather than an insistence on learning ‘the basics’.
    • Flexible teaching that values purpose and personalised timing, and ends the herding of children together by age to ‘learn’ a national ‘curriculum’
    • Nurturing the free association of ideas
    • Encouraging problem solving, thinking outside the box, and the creation of solutions rather than limit academic study to the critique of others’ ideas.
    • Giving equal value to visual and verbal thinking[57]

Autism Speaks boycott

The blue puzzle piece of Autism Speaks
The logo of Autism Speaks is a blue jigsaw piece, which many advocates object to because of what it symbolizes.[22]

As the most recognized name in autism advocacy worldwide, Autism Speaks is seen as representative of autism, particularly advocacy of a cure.[58] As a result, Autism Speaks is implicated in perpetuating misconceptions, including inaccurate diagnostic criteria, functioning labels, "person"-first language, the medical model of disability, equation of communication and intelligence, promotion of ABA therapy, comparisons between autism and diseases, the view of rising autism diagnosis rates as an epidemic, the concept of autism as something separable from people with autism, the view of children with autism as trapped or broken, the belief that married couples who have children with autism are more likely to divorce, and the belief that parent-on-child murder is caused by lack of services.[citation needed]

In addition to its cultural impact, Autism Speaks has been criticized for ignoring and excluding people with autism.[59] Until he resigned in 2013, John Elder Robison was the organization's only board member with autism. His resignation came two days after the release of an op-ed by the group's co-founder Suzanne Wright which, according to Robison, "is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent."[60] Simone Greggs, the mother of a child with autism, filed a lawsuit against Autism Speaks for disability discrimination after her job offer was rescinded. The suit alleges that she lost the job offer due to asking for an accommodation on behalf of her son.[61]

Autism Speaks has been challenged on financial grounds, citing its past review on Charity Navigator as spending an excessive amount on salaries for its executives and fundraising activities.[62]

Autism Speaks has produced three major films, each met with strong opposition from the Autistic community. Autism Every Day is a documentary featuring interviews of parents with mostly negative opinions about autism and their situations. It has been criticized due to parents speaking about their children as if they are not there. In one interview, former board member Alison Singer, mother of a daughter with autism, reveals she contemplated murder-suicide with her daughter in the same room.[63] I Am Autism is a short video that personifies autism as a narrative voice, which compares itself to several diseases[64] and makes the false claim[65] of causing divorce.[66][67] Sounding the Alarm is a documentary exploring the transition to adulthood and the cost of lifetime care. It was criticized for being "full of dehumanizing rhetoric" and portraying ignorance of nonverbal communication.[68]

Because of the number of objections to the organization, Autism Speaks fundraising events have been the object of organized protest.[69][70] Many of these protests are organized by the Autistic Self Advocacy Network.[71] In 2013, the organization Boycott Autism Speaks published a list of companies that donate money to Autism Speaks along with their contact information, urging those in the Autistic community to pressure those companies into dropping their support via an active boycott, since direct appeals to Autism Speaks did not result in the desired changes.[72] A month later, ASAN published its 2014 Joint Letter to the Sponsors of Autism Speaks, signed by 26 different disability-related organizations, appealing to the moral responsibility of the sponsors, donors, and other supporters.[73]

Autism Rights groups

There are several organizations in the autism rights movement. Some like the Autistic Self Advocacy Network are led exclusively by Autistic people, while others such as Autism National Committee encourage cooperation between Autistic people and their non-autistic allies.

Year founded Title Description Nonprofit status
1962 National Autistic Society (NAS) Charity supporting advocacy and education. NAS manages a number of schools throughout the United Kingdom.[74] Registered charity
1986 Vlaamse Vereniging Autisme (VVA) Flanders based social network consisting of both Autistic individuals and family members. Autistic individuals and couples where one parter has Autism are frequent speakers or hosts at events intended to improve the understanding and collaboration between Autistic individuals and non-Autistic individuals and eliminate misconceptions about Autism. vzw (equivalent to 501(c))
1990 Autism National Committee (AutCom) Advocacy organization with a specific focus on civil rights, dedicated to "Social Justice for All Citizens with Autism."[75] 501(c)3
1992 Autism Network International (ANI) Self-advocacy organization founded by Autistic individuals. ANI is the host of the annual Autreat conference. None
2004 Aspies For Freedom (AFF) Web-based organization for the Autistic community that had more than 20,000 members. Aspies For Freedom has disbanded, but some of its former members have reorganized at the online communities of Autism Friends Network and ASDCommunity.
2005 The Autism Acceptance Project (TAAProject) Organization founded by mother to autistic son Estee Klar with a group of autistic advisory and board members. An arts-based organization with an online presence that conducts online and offline events to support autism acceptance and critical thinking about autism and disability. Based in Canada. Canadian Registered Charity
2006 Autistic Self Advocacy Network (ASAN) Self-advocacy organization founded by Ari Ne'eman to represent the Autistic community and further the autism rights movement. 501(c)3
2009 Don't Play Me, Pay Me UK campaign focusing on Asperger syndrome, encouraging and supporting disabled actors.[76] None
2009 Autism Women's Network (AWN) Self-advocacy organization founded by several Autistic women, focused on the intersection of the autism rights movement with feminism.[77] 501(c)3
2010 Thinking Person's Guide To Autism (TPGA) Collaborative online information resource and publisher of the book by the same name. 501(c)3
2013 The I Can Network The I Can Network is a movement dedicated to driving a rethink of the Autism Spectrum among young people and the community, away from ‘I Can’t’ to ‘I Can’.

Events and activities

  • The ANI annually hosts Autreat, a retreat-style conference developed to allow autistic individuals to meet, socialize and learn advocacy skills in an "autism friendly" environment. It was founded in 1996.[4]
  • In 2005, Aspies For Freedom founded Autistic Pride Day, which is now celebrated internationally, every year on June 18.
  • In 2005, The Autism Acceptance Project "www.taaproject.com" began its first arts-based events and lectures to support autistic individuals in response the negative portrayals of autism by the non-autistic community in Canada.
  • In 2008, Autistic Rights Movement UK founded. Name changed to Autistic UK, 2012.
  • In 2010, an initiative by Corina Lynn Becker created Autistics Speaking Day as a response to the then-upcoming first commemoration of Communication Shutdown.[78] The annual Communication Shutdown event encourages non-autistics to refrain from using social networking websites for one day as a perspective-taking exercise,[79] while Autistics Speaking Day encourages Autistic people to become more active on social media and to describe their experiences during a time when there are fewer neurotypical voices in the mix.
  • 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.[80][81] Autism Acceptance Day is now held every April.[80]
  • In 2013, Tone It Down Taupe was created as a parody of Light It Up Blue, asking people to "tone down the fear rhetoric [and] alarmism."[82] The campaign has successfully raised funds for multiple iPad giveaways to help autistic adults communicate.[83]
  • Advocates have implemented several experimental programs for alternative education for individuals on the spectrum. For instance, the School of ASPIE (Autistic Strength, Purpose and Independence in Education) in Boiceville, New York aims to help autistics cope with a non-autistic world, but stresses that it is acceptable and expected that they "act autistic".[11]
  • Autism rights activists organize protests against organizations they consider objectionable, most notably Autism Speaks and the Judge Rotenberg Center.

Criticisms and counter-movements

Parents with the perspective of autism as a disorder (which is called the "pro-cure perspective" in the autism rights movement) believe that therapy with the intent of extinguishing stereotypically autistic behavior is in their children's best interests; they see this as a treatment that will reduce their children's suffering.[84][85] These critics say ABA gives autistic children the best chance of success in adulthood, as they either do not believe it is possible that adult society could accommodate autistic people (who have not been trained by ABA to exhibit neurotypical behavior at all times) or they do not believe it is desirable to do so.

Some parents believe that intensive behavioral therapy is the only way to alleviate autistic children's disabilities.[11] Some critics also fear that the movement will prevent autistic children from receiving important therapies. Kit Weintraub has responded to Michelle Dawson's claims that ABA is harmful by insisting that it is medically necessary and appropriate treatment, and that it is harmful to deny it to autistic children who need it.[86]

There are also accusations about how well autistic people of different functioning levels are represented in the movement. Critics of the movement argue that anyone on the autism spectrum who is able to express their desire not to be cured must be high functioning autistic or have Asperger syndrome,.[11] Lenny Schafer argues that if every use of autism were changed to read Asperger syndrome, then the movement might make sense,[11] although the incorporation of Asperger syndrome into the autism diagnosis in the DSM-5 has been used as a counterargument by the autism rights movement.[87]

Sue Rubin, the subject of the Oscar-nominated documentary Autism Is A World, is an example of an autistic adult who is aligned with the cure group. In her opinion, people with Asperger syndrome can communicate well and "pass for normal", while "low-functioning" people have a severe disability; "low functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful."[38]

Prominent figures

Temple Grandin



From Wikipedia, the free encyclopedia

Temple B Grandin
TempleGrandin.jpg
Born Mary Temple Grandin[1]
(1947-08-29) August 29, 1947 (age 67)
Boston, Massachusetts,
United States
Fields
Institutions Colorado State University
Alma mater
Known for
  • Livestock industry consultancy
  • Autism rights activism
Mary Temple Grandin (born August 29, 1947) is an American professor of animal science at Colorado State University, a best-selling author, an autistic activist, and a consultant to the livestock industry on animal behavior. She also invented the "hug box", a device to calm those on the autism spectrum. The subject of an award-winning, 2010 biographical film, Temple Grandin, she also was listed in the Time 100 list of the one hundred most influential people in the world in the "Heroes" category.[2]

Early life and education

Grandin was born in Boston, Massachusetts, to Eustacia Cutler and Richard Grandin. Although she was diagnosed with autism in 1949 at the age of two, she was labeled with brain damage and placed early in a structured nursery school. When a doctor suggested speech therapy for Grandin, her mother hired a nanny to assist in the child's development. The nanny would spend hours playing turn-taking games with Grandin and her sister.[3]

Her speech development delayed, Grandin did not begin talking until the age of four.[4] She considers herself fortunate to have had supportive mentors from elementary school onward. Even so, Grandin states that junior high and high school were the most unpleasant times of her life due to her poor conversational skills. She was the "nerdy kid" whom everyone ridiculed. At times, while she walked down the hallways, her fellow students would taunt her by saying "tape recorder" because of her habit of repetitive speech. Grandin states, "I could laugh about it now, but back then it really hurt."[5]

After she graduated in 1966 from Hampshire Country School, a boarding school for gifted children in Rindge, New Hampshire, Grandin went on to earn her bachelor's degree in psychology from Franklin Pierce College in 1970, a master's degree in animal science from Arizona State University in 1975, and a doctoral degree in animal science from the University of Illinois at Urbana-Champaign in 1989.

Career

Grandin is a prominent and widely cited proponent of the rights of autistic persons and of animal welfare.[6]

She has lectured widely about her first-hand experiences of the anxiety of feeling threatened by everything in her surroundings, and of being dismissed and feared, which motivates her work in humane livestock handling processes. She studied the behavior of cattle, how they react to ranchers, movements, objects and light. Grandin then designed adapted curved corrals, intended to reduce stress, panic and injury in animals being led to slaughter.

Her business website promotes improvement of standards in slaughter plants and livestock farms. In 2004 she won a "Proggy" award in the "Visionary" category, from People for the Ethical Treatment of Animals.[7]

One of her notable essays about animal welfare is "Animals Are Not Things",[8] in which she posits that technically, animals are property in our society, but the law ultimately gives them ethical protections or rights. She compares the properties and rights of owning cows, versus owning screwdrivers, enumerating how both may be used to serve human purposes in many ways, but when it comes to inflicting pain, there is a vital distinction between such "properties": legally a person can smash or grind up a screwdriver, but cannot torture an animal legally.

Grandin became well-known after being described by Oliver Sacks in the title narrative of his book An Anthropologist on Mars (1995), for which he won a Polk Award; the title is derived from Grandin's description of how she feels around neurotypical people. She first spoke in public about autism in the mid-1980s, at the request of Ruth C. Sullivan, one of the founders of the Autism Society of America (ASA). Sullivan writes:
I first met Temple in the mid-1980s [at the] annual [ASA] conference. Standing on the periphery of the group was a tall young woman who was obviously interested in the discussions. She seemed shy and pleasant, but mostly she just listened. I learned her name was Temple Grandin. It wasn't until later in the week that I realized she was someone with autism. I approached her and asked if she'd be willing to speak at the next year's [ASA] conference. She agreed. The next year Temple first addressed an [ASA] audience. People were standing at least three deep. The audience couldn't get enough of her. Here, for the first time, was someone who could tell us from her own experience, what it was like to be extremely sound sensitive ("like being tied to the rail and the train's coming"). She was asked many questions: "Why does my son do so much spinning?" "Why does he hold his hands to his ears?" "Why doesn't he look at me?" She spoke from her own experience, and her insight was impressive. There were tears in more than one set of eyes that day. Temple quickly became a much sought-after speaker in the autism community.[9]
Based on personal experience, Grandin advocates early intervention to address autism and supportive teachers, who can direct fixations of the child with autism in fruitful directions. She has described her hypersensitivity to noise and other sensory stimuli. She claims she is a primarily visual thinker[10] and has said that words are her second language. Temple attributes her success as a humane livestock facility designer to her ability to recall detail, which is a characteristic of her visual memory. Grandin compares her memory to full-length movies in her head, that may be replayed at will, allowing her to notice small details. She also is able to view her memories using slightly different contexts by changing the positions of the lighting and shadows.

Her insight into the minds of cattle has taught her to value the changes in details to which animals are particularly sensitive and to use her visualization skills to design thoughtful and humane animal-handling equipment. She was named a fellow of the American Society of Agricultural and Biological Engineers in 2009.[11]

As a partial proponent of neurodiversity, Grandin has expressed that she would not support a cure of the entirety of the autism spectrum.[12]

In 2012, when the American beef industry was struggling with public perception of its use and sale of pink slime, Grandin spoke out in support of the food product. She said, “It should be on the market. It should be labeled. We should not be throwing away that much beef."[13]

Personal life

"I think using animals for food is an ethical thing to do, but we've got to do it right. We've got to give those animals a decent life, and we've got to give them a painless death. We owe the animal respect."
—Temple Grandin

Temple Grandin at TED 2010

Grandin says that "the part of other people that has emotional relationships is not part of me", and she has neither married nor had children. Beyond her work in animal science and welfare and autism rights, her interests include horse riding, science fiction, movies, and biochemistry.

She has noted in her autobiographical works that autism affects every aspect of her life. She has to wear comfortable clothes to counteract her sensory processing disorder and has structured her lifestyle to avoid sensory overload. She regularly takes antidepressants, but no longer uses a squeeze-box (hug machine), a device which she invented at the age of 18 as a form of stress relief therapy,[14] stating in February 2010 that: "It broke two years ago, and I never got around to fixing it. I'm into hugging people now."[15]

Honors

In 2010, Grandin was listed in the Time 100 list of the one hundred most influential people in the world in the "Heroes" category.[2] In 2011, she received a Double Helix Medal.[16] She has received honorary degrees from many universities including Carnegie Mellon University in the United States (2012), McGill University in Canada (1999), and the Swedish University of Agricultural Sciences (2009).[17]

In a TED talk given in 2010, Grandin stated, "The world needs all types of minds."[18]

In popular culture

Grandin has been featured on major media programs, such as Lisa Davis's It's Your Health, ABC's Primetime Live, the Today Show, and Larry King Live, the NPR show, Fresh Air with Terry Gross, and she has been written up in Time magazine, People magazine, Discover magazine, Forbes, and The New York Times.[19][20] In 2012, Grandin was interviewed on Thriving Canine Radio to discuss "A Different Perspective on Animal Behavior."

She was the subject of the Horizon documentary, “The Woman Who Thinks Like a Cow,” first broadcast by the BBC on June 8, 2006, and Nick News with Linda Ellerbee in the spring of 2006.[21] She also has been a subject in the series First Person by Errol Morris.

Grandin is the focus of a semi-biographical HBO film, entitled Temple Grandin,[22][23] starring Claire Danes as Grandin.[24] The movie was released in 2010, was nominated for 15 Emmys, and received five awards, including Outstanding Made for Television Movie and Best Actress in a Drama.[25] Grandin was on stage as the award was accepted, and she spoke briefly to the audience. Coincidentally, the 2010 Emmy Awards happened on Grandin's birthday. At the 2011 Golden Globes, Claire Danes won a Golden Globe for Best Performance by an Actress in a Mini-Series or Motion Picture Made for Television.

Grandin was featured in Beautiful Minds: A Voyage Into the Brain, a documentary produced in 2006 by colourFIELD tell-a-vision, a German company. She appeared in a 2011 documentary on Sci Channel, "Ingenious Minds".[26] She was named one of 2010's one hundred most influential people in the world by Time magazine.[2]

She also was interviewed by Michael Pollan in his best-selling book, The Omnivore's Dilemma,[27] in which she discussed the livestock industry.

Grandin was also invited to give a lecture at a TEDTalk conference in February 2010. Her lecture discussed the importance of fostering different kinds of minds among young people, particularly focusing on children on the autism spectrum.[28]

Folk-punk band Andrew Jackson Jihad included two songs called "Temple Grandin" and "Temple Grandin Too" on their LP Christmas Island.[29]

Publications

  • Emergence: Labeled Autistic (with Margaret Scariano, 1986, updated 1991), ISBN 0-446-67182-7
  • The Learning Style of People with Autism: An Autobiography (1995). In Teaching Children with Autism : Strategies to Enhance Communication and Socialization, Kathleen Ann Quill, ISBN 0-8273-6269-2
  • Thinking in Pictures: Other Reports from My Life with Autism (1996) ISBN 0-679-77289-8
  • Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism (2004). ISBN 1-931282-56-0
  • Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior (with Catherine Johnson, 2005), ISBN 0-7432-4769-8
  • The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism (with Sean Barron, 2005), ISBN 1-932565-06-X
  • The Way I See It: A Personal Look At Autism And Asperger's (2008), ISBN 9781932565720
  • Animals Make Us Human: Creating the Best life for Animals (with Catherine Johnson, 2009), ISBN 978-0-15-101489-7
  • The Autistic Brain: Thinking Across the Spectrum (with Richard Panek, 2013), ISBN 978-0-547-63645-0
  • Genetics and the Behavior of Domestic Animals, Second Edition (with Mark Deesing, 2013), ISBN 978-0-12-394586-0
  • Improving animal welfare: a practical approach (2010). ISBN 978-1-84593-541-2, CABI, UK
  • Livestock handling and transport (2007). ISBN 978-1-84593-219-0. CABI, UK.
  • Grandin, T. 2013. Making slaughterhouses more humane for cattle, pigs, and sheep. Annual Review of Animal Biosciences. 1:491-512.
  • Grandin, T. 2001. Cattle vocalizations are associated with handling and equipment problems at beef slaughter plants. Applied Animal Behaviour Science. Volume 71, 2001, Pg. 191-201.
  • Grandin, T. 1996. Factors That Impede Animal Movement at Slaughter Plants. Journal of the American Veterinary Medical Association. 209 No.4:757-759.
  • Grandin, T. 1995. Restraint of Livestock. Proceedings: Animal Behaviour Design of Livestock and Poultry Systems International Conference (pages 208-223). Published by: Northeast Regional Agriculture Engineering Service. Cooperative Extension. 152 Riley - Robb Hall, Ithaca, New York, 14853 USA.
  • Grandin, T. 1994. Euthanasia and Slaughter of Livestock. Journal of American Veterinary Medical Association. Volume 204:1354-1360.
  • Grandin, T. 1989 (Updated 1999). Behavioral Principles of Livestock Handling. Professional Animal Scientist. December 1989 (pages 1–11).

Representation of a Lie group

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