Passed on September 17, 2008, and signed into law by President George W. Bush on September 25, 2008, the ADAAA was a response to a number of decisions by the Supreme Court that had interpreted the original text of the ADA.
Because members of the U.S. Congress viewed those decisions as limiting
the rights of persons with disabilities, the ADAAA effectively reversed
those decisions by changing the law. It also rejected portions of the
regulations published by the Equal Employment Opportunity Commission
(EEOC) that interpret Title I (the employment-related title) of the
ADA. The ADAAA makes changes to the definition of the term "disability,"
clarifying and broadening that definition—and therefore the number and
types of persons who are protected under the ADA and other Federal
disability nondiscrimination laws. It was designed to strike a balance
between employer and employee interests.
The ADAAA requires that courts interpreting the ADA and other
Federal disability nondiscrimination laws focus on whether the covered
entity has discriminated, rather than whether the individual seeking the
law's protection has an impairment that fits within the technical
definition of the term "disability." The Act retains the ADA's basic
definition of "disability" as an impairment that substantially limits
one or more major life activities; a record of such an impairment; or
being regarded as having such an impairment. However, it changes the way
that the statutory terms should be interpreted.
Reasons for enactment
Congress used the functional definition of disability from Section 504 of the Rehabilitation Act of 1973.
Due to 17 years of development through case law, Congress believed the
requirements of the definition were well understood. Within the
framework established under the Rehabilitation Act, courts treated the
determination of disability as a threshold issue, but focused primarily
on whether unlawful discrimination had occurred. After the passage of
the ADA, the focus of court decisions shifted to deciding if people's
claims of discrimination were protected by the law.
Congress passed the ADA Amendments Act of 2008 to overturn two controversial court decisions based on interpretations of the ADA. The first decision—by the Supreme Court in Sutton v. United Air Lines, Inc.—stated that impairments must be considered in their mitigated state. The second decision in Toyota Motor Manufacturing, Kentucky, Inc. v. Williams narrowed the definition of "disability" to just those impairments that impact tasks of daily living.
In following these decisions, lower courts would frequently focus on
whether the plaintiff was, in fact, disabled and never reach the issue
of whether discrimination had occurred.
Through these rulings, the Supreme Court and lower courts created
a situation in which an individual with a physical or mental impairment
severe enough to constitute a "substantially limiting a major life
activity" under case law based on the Rehabilitation Act did not qualify
for protection under the ADA. These included individuals with
impairments such as amputation, intellectual disabilities, epilepsy,
multiple sclerosis, HIV/AIDS, diabetes, muscular dystrophy, and cancer.
Push for changes
In 2004, the National Council on Disability,
an independent Federal agency charged with making recommendations to
the President and Congress, issued a report called “Righting the ADA.”
This report detailed various ways that the courts had misinterpreted
Congressional intent and limited the reach of the ADA, and proposed
legislative language to restore that intent. The most important
misinterpretation the report identified was the narrowing of the ADA’s
definition of “disability” to exclude many individuals that Congress
intended to protect from discrimination.
Over the course of 2006, the Consortium for Citizens with Disabilities (CCD)
worked to develop consensus within the disability rights community
regarding the strategy and substance of a bill that would fix the
definition problem. On September 29, 2006, the last working day of the
109th Congress, Representative Jim Sensenbrenner (R-WI), then Chair of the United States House Committee on the Judiciary, and then-Minority Leader Steny Hoyer (D-MD) introduced H.R. 6258 (“ADA Restoration Act of 2006”)
to “restore the intent of the Americans with Disabilities Act of 1990
to more fully remove the barriers that confront disabled Americans.” The
bill represented an important first step towards reform but was
rejected by the committee.
On July 26, 2007, the 17th anniversary of the ADA’s passage, Majority Leader Hoyer, Representative Sensenbrenner, and Senators Tom Harkin (D-IA) and Arlen Specter (R-PA) introduced companion "ADA restoration" bills (H.R. 3195; S. 1881)
that closely tracked a draft bill produced by the CCD and Congressional
staff. On the day of the introduction of H.R. 3195, the bill had 143
co-sponsors in the House. Despite the number of House co-sponsors of
the legislation, the business community and the Justice Department urged
Members of Congress to oppose the ADA Restoration Act. Concerned that a
partisan battle would damage the traditionally bi-partisan base of
support for disability rights legislation, Congressional champions of
the bill, including Majority Leader Hoyer, encouraged the disability
community to meet with the business community and negotiate bill
language that both communities would agree to defend through the entire
legislative process.
Negotiations leading to the ADAAA
The
coalition of advocates from the business and disability communities
that spearheaded the efforts to pass the ADAAA first came together on
February 19, 2008. That initial group consisted of representatives from
the American Association of People with Disabilities (AAPD), the National Council on Independent Living (NCIL), the Bazelon Center for Mental Health Law, the National Disabilities Rights Network (NDRN), the Epilepsy Foundation (EF), the United States Chamber of Commerce, the Society for Human Resource Management (SHRM), the National Association of Manufacturers (NAM), and the HR Policy Association (HR Policy).
Each group entered the negotiations by signing a document indicating
its understanding that any agreement reached would be defended and
maintained by all of the groups. Modifications and amendments to the
draft bill were permitted only by mutual agreement.
The negotiating group met almost weekly from February through May
2008. Both the disability and business negotiators consistently
checked back with a much broader group of disability and business
advocates throughout the process. The key negotiators for the
disability group were Andy Imparato (AAPD); Sandy Finucane (EF); Chai Feldblum
(Georgetown Law, on behalf of EF); Jennifer Mathis (Bazelon Center for
Mental Health Law); John Lancaster (NICL); and Curt Decker (NDRN).
Former Representative Tony Coelho and Nancy Zirkin from the Leadership Conference on Civil Rights
also provided political counsel throughout the process. The business
negotiators were led by Mike Eastman and Randal Johnson (Chamber),
assisted by Larry Lorber (Proskauer Rose);
Mike Aitken and Mike Layman (SHRM); Mike Peterson (HR Policy); and Jeri
Gillepsie (NAM). Tim Bartl (HR Policy) and Camille Olson (Seyfarth
Shaw) also provided political and legal counsel to the business
negotiators. Cheryl Sensenbrenner, Board Chair of AAPD, was involved
throughout the process.
The negotiating group reached a final agreement on May 13, 2008.
That agreement formed the basis for a Congressional agreement and
substitute to the earlier version of H.R. 3195.
The substitute was renamed the ADA Amendments Act of 2008 (ADAAA).
H.R. 3195 subsequently passed by wide margins in the House Education and
Labor Committee and the House Judiciary Committee, and passed the House
of Representatives on June 25, 2008, by a vote of 402 Ayes, 17 Nays, 15
Present/Not Voting.
The coalition was tested in July 2008 when Senators Tom Harkin
and Orrin Hatch proposed a new definition of “substantially limits.”
Representatives from the disability and business communities came back
together to find a compromise that would address the Senators' concern.
They reached a new resolution that dropped the definition of
“substantially limits” entirely—replacing it with additional findings
and purposes.
This agreement became the basis of S. 3406, which passed the Senate by unanimous consent on September 11, 2008.
The House of Representatives followed suit one week later, and the
President signed the ADAAA into the law on September 25, 2008.
For a full list of the many individuals and groups who worked on
the ADAAA, from the disability, civil rights, and business communities,
see the Statement by Majority Leader Hoyer on September 17, 2008.
Significant changes
The ADAAA explicitly overturns the controversial Supreme Court decisions in Sutton and Toyota,
rejecting the high standards imposed on claimants by the Court in those
cases, and reiterates that Congress intends that the scope of the ADA
be broad and inclusive.
The ADAAA retains the ADA’s definition of disability as a physical or
mental impairment that substantially limits one or more life activities;
a record of such impairment; or being regarded as having such
impairment. However, it clarifies and expands the definition’s meaning
and application in the following ways:
First, the ADAAA deletes two findings in the ADA that led the
Supreme Court to restrict the meaning and application of the definition
of disability. These findings were that “some 43,000,000 Americans have
one or more physical or mental disabilities” and that “individuals with
disabilities are a discrete and insular minority.” The Court had
treated these findings as limiting how other provisions of the ADA
should be construed.
Second, the law provides that the definition of disability “shall
be construed in favor of broad coverage of individuals under this Act,
to the maximum extent permitted by the terms of this Act.” It retains
the terms “substantially limits” and "major life activities" from the
original ADA definition of "disability," but makes clear that Congress
intended the terms to impose less- demanding standards than those
enunciated by the Supreme Court in the Toyota case. It also states that
the EEOC's regulatory definition of "substantially limits" was overly
strict.
Third, the law prohibits consideration of mitigating measures
such as medication, assistive technology, accommodations, or
modifications when determining whether an impairment substantially
limits a major life activity. The related text of the ADAAA explicitly
rejects the Supreme Court’s holdings in Sutton and its companion cases
that mitigating measures must be considered in determining whether an
impairment constitutes a disability under the law. The ADAAA also
provides that impairments that are episodic or in remission must be
assessed according to their active state.
Fourth, the law provides additional direction on the “major life
activities” that must be substantially limited for an impairment to be a
disability: the Act lists specific examples of major life activities, rather than leaving that phrase open to interpretation, as the ADA of 1990 did.
The non-exhaustive list of major life activities in § 4(4)(a) of the
amended ADA includes caring for oneself, performing manual tasks,
seeing, hearing, eating, sleeping, walking, standing, lifting, bending,
speaking, breathing, learning, reading, concentrating, thinking,
communicating and working. The ADAAA also lists major bodily functions,
including, but not limited to, functions of the immune system; normal
cell growth; and digestive, bowel, bladder, neurological, brain,
respiratory, circulatory, endocrine, and reproductive functions.
Fifth, the law removes from the “regarded as” prong of the
disability definition (the third prong of the definition) the
requirement that an individual demonstrate that the impairment that he
or she has, or is perceived to have, limits a major life activity in a
way that is perceived to be substantial. Under the ADAAA,
therefore, an individual can establish coverage under the law by showing
that he or she has been subjected to an action prohibited under the Act
because of an actual or perceived physical or mental impairment that is
not transitory and minor.
The law also explicitly states that although individuals who fall
solely under the “regarded as” prong of the definition of disability are
protected from discrimination, entities covered by the ADA are not
required to provide accommodations, or to modify policies and
procedures, for such persons.
Sixth, the law clarifies that the authority granted to three
specific Federal agencies to issue regulations interpreting the ADA
includes the authority to issue regulations implementing the definitions
contained in Sections 3 and 4 of that Act.
Finally, the ADAAA makes conforming amendments Section 7 of the Rehabilitation Act of 1973,
and to Title I of the ADA itself. To conform the employment-related
provisions of the ADA with parallel provisions of Title VII of the Civil Rights Act of 1964,
the latter amendments change the language of Title I to provide that no
covered entity shall discriminate against a qualified individual “on
the basis of disability.”
To summarize the ADAAA timeline: the Act was introduced
on July 31, 2008; passed the Senate on September 11, 2008; passed the
House on September 17, 2008; was signed by the President on September
25, 2008; and took effect on January 1, 2009.
The United States Court of Appeals for the District of Columbia
Circuit held on July 21, 2009, that the ADAAA does not apply
retroactively.
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. 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. 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.
Terminology
Although some prefer to use the person-first terminology "person with autism," most members of the autistic community prefer identity-first terminology, such as autistic person or autistic in formal English, to stress that autism is a part of their identity rather than a disease they have. In addition, phrases like suffers from autism are objectionable to many people.
The autistic community has developed abbreviations for commonly used terms, such as:
Autie – an autistic person. It can be contrasted with aspie to refer to those specifically diagnosed with classic autism or another autism spectrum disorder.
Autistics and Cousins (AC) – a cover term including aspies,
auties, and their "cousins", i.e. people with some autistic traits but
no formal diagnosis.
Curebie – a person with the desire to cure autism. This term is highly derogatory.
Neurotypical (NT)
– a person who does not have any developmental or neurological
disorders. Often used to describe an individual who is not on the autism
spectrum.
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. Originally and commonly, however, it is used satirically to describe those without autism.
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.
A much smaller proportion of adult autistics marry than the general population. It has been hypothesized that autistic people are subject to assortative mating; they tend to pair with each other and raise autistic offspring. This hypothesis has been publicized in the popular press, 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."
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. 1 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.
Gender aspects
Autistic women
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 and among those with Asperger syndrome or "high functioning autism", males are up to ten times more likely to be diagnosed.
This may be due to the fact that many of the diagnostic tools used to
diagnose autism have been crafted through the observation of males on
the autism spectrum and are therefore more likely to identify men and
boys with autism then their female counterparts.
For many autistic females the lack of diagnosis or a late diagnosis
results in them missing out on supports and interventions that are most
valuable when implemented at a younger age.
For those females who do receive a diagnosis and are provided with
those supports, often have to face the many of them have been created
with males in mind and may not acknowledge the physical, psychological
and societal differences that females face. Some autistic women find themselves misdiagnosed with personality disorders, such as borderline personality disorder, avoidant personality disorder and schizoid personality disorder. 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.
Autism may express differently in the sexes, with many females on the
spectrum presenting more subtly then males and may be more adept at
developing more sophisticated social masking behaviours, as such females
with more prominent difficulties are more likely to be diagnosed then
those who present differently. Autistic females are more likely to develop a more sophisticated social camouflage for a variety of reasons.
One theory as to why is that women as a whole face more complex social
expectations then men, creating a greater need to "prepare more
thoroughly for social situations, or risk ostracism".
Another theory suggests that women on the spectrum have a more inborn
need for social interaction then their male counterparts, leading many
women and girls to be more invested in creating social camouflage
strategies.
These strategies are developed in a variety of ways such as, observing
and copying the social interactions of those around them as well as
creating strategies to attempt to "go undetected". These coping
mechanisms can take an immense amount of time and energy to learn and
practice and can as Dr. Shana Nicols states "more often then not lead to
exhaustion, withdrawal, anxiety, selective mutism and depression".
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.
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. Females on the autism spectrum often "internalize feelings of frustration and failure" and are believed to suffer higher rates of certain comorbidities such as anxiety and depression (36 and 34 percent respectively),
due in large part to the desire for along with the difficulties in
finding social inclusion along with other social and sensory challenges.
Lack of diagnosis can also lead autistic females to have higher rates
of depression, anxiety and self-esteem issues as they are left without a clear understanding as to why they do not "fit in" with their peers.
Females on the spectrum also seem to have higher rates of eating
disorders, such as anorexia then other females. This may be related to
social isolation and elevated levels of anxiety along with a need to
control their environment more fully.
Although both males and females on the spectrum have a higher risk of
experiencing bullying, these experiences often present differently based
on gender. Although sample sizes are too small to draw firm conclusions, one
study suggests that autistic women are less likely than males over the
long term to marry, have families, go to college, have careers and live
independently. An intense interest in specific topics plays a
significant factor in the lives of those on the autism spectrum
of both genders. Females on the spectrum may focus on different topics
then their male counterparts; autistic females rarely have interests in
numbers or have stores of specialized knowledge,
the intense interests of autistic females can be overlooked as they are
often seen to be more applicable to a broader section of society. Both males and females with autism
deal with the same core symptom, but when those symptoms are mixed with
ideas of gender, they can offer very different lived experiences for
females then their male counterparts. The profile of autism may change
as more is understood about females, whose autism may go undiagnosed.
Other issues related to gender
In recent years, some people have suggested links between autism and transgender people.
This issue has not been without controversy, as the issue is open to
confusion; it is currently unclear whether this correlation exists due
to an innate characteristic of autism that may also cause unusual
discrepancies in sex or gender,
or whether it is 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.
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." 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.
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.
Dawn Prince-Hughes, diagnosed with Asperger's, describes her observations of gorillas in Songs of the Gorilla Nation.
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.
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.
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.
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).
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. Homelessness is very common among people with AS.
While some researchers have suggested that autistic individuals
are less likely to self-enhance their reputation compared to those
without autism, others argue that autistic individuals do not have less
of a desire for self-enhancement than non-autistic individuals.
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. Alexithymia in AS functions as an independent variable relying on different neural networks than those implicated in theory of mind.
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.
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". 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.
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.
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 (sometimes referred to as Hewitt) and the second was Isles v Ealing Council. The same applies in the United States with the Americans with Disabilities Act, amended in 2008 to include autism spectrum disorders.
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.
According to Elizabeth Fein, the dynamic of role-playing games is especially positive and attractive to people on the autism spectrum.
The social information exchanged in these games are explicit, top-down
and systematic and they follow a set of shared abstract rules. Baez and
Rattazzi showed that interpreting the implicit social information of
daily life is difficult for autistics.
Autism rights movement
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.
The autism rights movement is a social movement within the context of disability rights that emphasizes the concept of neurodiversity, viewing the autism spectrum as a result of natural variations in the human brain rather than a disorder to be cured. The ARM advocates a variety of goals, including greater acceptance of autistic behaviors; therapies that focus on coping skills rather than imitating the behaviors of neurotypical peers; the creation of social networks and events that allow autistic people to socialize on their own terms; and the recognition of the autistic community as a minority group.
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:
the medical perspective, that autism is caused by a genetic defect and
should be addressed by targeting the autism gene(s), and the fringe theory that autism is caused by environmental factors like vaccines and pollution and could be cured by addressing environmental causes.
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 "low-functioning" autistic people.
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.
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, or feel that autism conditions are not harmful or detrimental. For example, it may be seen as an evolutionary adaptation to an ecological niche by some environmentalists and the more radical autism rights campaigners.
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. 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.
Because many autistics find it easier to communicate online than in person, a large number of online resources are available. 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 some autistics tend to have difficulty with. It gives autistic individuals a way to communicate and form online communities.
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. 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."
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. 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.
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. 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.
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."
Light It Up Blue
In 2010, Autism Speaks launched the Light It Up Blue initiative. 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.
However, the Autism Speaks group is not well-received by most autism
rights activists, due to their lack of incorporation of perspectives of
actual autistic people in their work, and their focus on searching for a
'cure'.
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.
Autism Awareness Year
Autism awareness ribbon - not supported by many autistic people.
The year 2002 was declared Autism Awareness Year in the United Kingdom—this idea was initiated by Ivan and Charika Corea, parents of an autistic child, Charin. Autism Awareness Year was led by the British Institute of Brain Injured Children, Disabilities Trust, 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.
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. 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.
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.'" But the autism community is split over this issue, and some view this notion as radical.
Autistics Speaking Day
(ASDay), 1 November, is a self-advocacy campaign run by autistic people
to raise awareness and challenge negative stereotypes about autism by
speaking for themselves and sharing their stories. The first one was
held in 2010.
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."
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.
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.
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.
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. Autism Acceptance Day is now held every April.
"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.
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. Other local organizations have also arisen: for example, a European counterpart, Autscape, was created around 2005.
Twainbow
Twainbow
is an advocacy organization that provides awareness, education, and
support for autistic people who identify as
lesbian/gay/bisexual/transgender (LGBT).
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.
History
Donald Triplett was the first person diagnosed with autism. He was diagnosed by Kanner after being first examined in 1938, and was labeled as "case 1".
Triplett was noted for his savant abilities, particularly being able to
name musical notes played on a piano and to mentally multiply numbers.
His father, Oliver, described him as socially withdrawn but interested
in number patterns, music notes, letters of the alphabet, and U.S.
president pictures. By the age of 2, he had the ability to recite the
23rd Psalm and memorized 25 questions and answers from the Presbyterian catechism. He was also interested in creating musical chords.
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.
Sociological research has also investigated how social institutions,
particularly families, cope with the challenges associated with autism.
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. 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.
Some works from the 1970s have autistic characters, who are rarely labeled. 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 autistic people, including exceptional abilities as seen in the 1988 movie Rain Man.
Such portrayals have been criticized by both scientific studies and
media analysts over the years for fostering a pigeonholing image of
autism that leads to false expectations about real-life autistic
individuals, with Rain Man being singled out for popularizing it.
Since the 1970s, fictional portrayals of autistic people, Asperger syndrome, and other ASCs have become more frequent.
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.
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.
Additionally, the media frequently depicts autism as only affecting
children, which promotes the misconception that autism does not affect
adults.
Notable individuals
Some notable figures on the autism spectrum include American food animal handling systems designer and author Temple Grandin, American Pulitzer Prize-winning music critic and author Tim Page, Australian musician, lead singer and only constant member of rock band the VinesCraig Nicholls, English actor and filmmaker Paddy Considine and Swedish environmental activist Greta Thunberg are autistic.
Thunberg, who in August 2018 started the "School strike for climate"
movement, has explained how the "gift" of living with Asperger syndrome
helps her "see things from outside the box" when it comes to climate change. In an interview with presenter Nick Robinson on BBC Radio 4's Today, the then-16-year-old activist said that autism helps her see things in "black and white". She went on to say:
It
makes me different, and being different is a gift, I would say. It also
makes me see things from outside the box. I don't easily fall for lies,
I can see through things. I don't think I would be interested in the
climate at all, if I had been like everyone else. Many people say that
it doesn't matter, you can cheat sometimes. But I can't do that. You
can't be a little bit sustainable. Either you're sustainable, or not
sustainable. For way too long the politicians and people in power have
got away with not doing anything at all to fight the climate crisis and
ecological crisis, but we will make sure that they will not get away
with it any longer.
Scottish singer Susan Boyle was diagnosed with Aspergers at the age of 51. Boyle was originally believed to have suffered slight brain damage at birth. Boyle rose to fame after appearing on the talent show Britain's Got Talent in 2009. Her debut album I Dreamed a dream, released in 2009, became the fastest selling debut by a UK artist of all time. American actress Daryl Hannah, star of movies such as Splash, Steel Magnolias and Wall Street, was diagnosed as being on the autism spectrum as a child. Diagnosed at fifteen, Heather Kuzmich appeared on America's Next Top Model in 2007. Although she did not win the competition, Kuzmich was voted the viewers' favourite eight weeks in a row. She has since been signed to Elite Model Management. New Zealand-born musician Ladyhawke and gold medal winning British Paralympic swimmer Jessica-Jane Applegate are also autistic.
Additionally, media speculation of contemporary figures as being on the autism spectrum has become popular in recent times. New York magazine reported some examples, which included that Time magazine suggested that Bill Gates is autistic, and that a biographer of Warren Buffett
wrote that his prodigious memory and "fascination with numbers" give
him "a vaguely autistic aura." The magazine also reported that on Celebrity Rehab, Dr. Drew Pinsky deemed basketball player Dennis Rodman a candidate for an Asperger's diagnosis, and the UCLA specialist consulted "seemed to concur". Nora Ephron
criticized these conclusions, writing that popular speculative
diagnoses suggest autism is "an epidemic, or else a wildly
over-diagnosed thing that there used to be other words for." The practice of diagnosing autism in these cases is controversial.
Some historical personalities are also the subject of speculation about being autistic, e.g. Michelangelo.
Mary Temple Grandin (born August 29, 1947) is an American
scientist and animal behavourist. She is a prominent proponent for the
humane treatment of livestock for slaughter and author of more than 60
scientific papers on animal behavior. Grandin is a consultant to the livestock industry, where she offers advice on animal behavior, and is also an autism spokesperson.
In 2010, Time 100, an annual list of the 100 most influential people in the world, named her in the "Heroes" category. She was the subject of the Emmy- and Golden Globe-winning semi-biographical film Temple Grandin. Grandin has been an outspoken proponent of autism rights and neurodiversity movements.
Early life
Family
Mary Temple Grandin was born in Boston, Massachusetts,
into a very wealthy family. One of the employees of the family also was
named Mary, so Grandin was referred to by her middle name, Temple, to
avoid confusion.
Her mother is Anna Eustacia Purves (now Cutler), an actress, singer,
and granddaughter of John Coleman Purves (co-inventor for the autopilot
aviation system). She also has a degree in English from Harvard University. Her father was Richard McCurdy Grandin, a real estate agent and heir to the largest corporate wheat farm business in America at the time, Grandin Farms. Grandin's parents divorced when she was 15, and her mother eventually went on to marry Ben Cutler, a renowned New York saxophonist, in 1965, when Grandin was 18 years old. Her father, Richard Grandin, died in California in 1993.
Grandin has three younger siblings: two sisters and a brother. Grandin has described one of her sisters as being dyslexic. Her younger sister is an artist, her other sister is a sculptor, and her brother is a banker. John Livingston Grandin (Temple's paternal great-grandfather) and his brother William James Grandin, were FrenchHuguenots who drilled for oil. He intended to cut a deal with John D. Rockefeller
in a meeting, but the latter kept him waiting too long so he walked out
before Rockefeller arrived. Then the brothers went into banking and
when Jay Cooke's firm collapsed they received thousands of acres of undeveloped land in North Dakota as debt collateral. They set up wheat farming in the Red River Valley and housed the workers in dormitories. The town of Grandin, North Dakota, is named after John Livingston Grandin.
Although raised in the Episcopal Church, early on Temple Grandin gave up on a belief in a personal deity or intention in favor of what she considers a more scientific perspective.
Diagnosis
Grandin
was not formally diagnosed with autism until her adulthood. As a
two-year-old, the only formal diagnosis given to Grandin was "brain
damage", a subsequent finding corroborated through cerebral imaging at the University of Utah by the time she turned 63 in 2010.
While Grandin was still in her mid-teens, her mother chanced upon a
diagnostic checklist for autism. After reviewing the checklist,
Grandin's mother hypothesised that Grandin's symptoms were best explained by the disorder and was later determined to be an autistic savant, but a formal diagnosis consistent with being on the autism spectrum was made only when Grandin was in her forties.
Early childhood
Her mother, Eustacia, took Grandin to the world's leading special needs researchers at the Boston Children's Hospital, with the hope of unearthing an alternative to institutionalization. Grandin's mother eventually located a neurologist who suggested a trial of speech therapy. A speech therapist was hired and Grandin received personalized training from the age of two and a half. A nanny
was hired when Grandin was aged three to play educational games for
hours with her. Grandin started kindergarten in Dedham Country Day
School. Her teachers and class strove to create an environment to
accommodate Grandin's needs and sensitivities.
Grandin 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.
The medical advice at the time for a diagnosis of autism was to
recommend institutionalization, a measure that caused a bitter rift of
opinion between Grandin's parents.
Her father was keen to follow this advice while her mother was strongly
opposed to the idea as it likely would have caused her to never be able
to see her daughter again.
Middle school and high school
Grandin attended Beaver Country Day School
from seventh grade to ninth grade. She was expelled at the age of 14
for throwing a book at a schoolmate who had taunted her. Grandin has
described herself as the "nerdy kid" whom everyone ridiculed. She has
described occasions when she walked down the hallways and 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."
The year after her expulsion, Grandin's parents divorced. Three
years later, Grandin's mother married Ben Cutler, a New York
saxophonist. At 15, Grandin spent a summer on the Arizonaranch of Ben Cutler's sister, Ann, and this would become a formative experience toward her subsequent career interest.
Following her expulsion from Beaver Country Day School (reports
vary on the name of the school Grandin was expelled from, with Grandin
noting it to be Cherry Falls Girls' School in her first book, Emergence: Labelled Autistic), Grandin's mother placed her in Mountain Country School (now known as Hampshire Country School), a private boarding school in Rindge, New Hampshire, for children with behavioral problems. It was here that Grandin met William Carlock, a science teacher who had worked for NASA. He became her mentor and helped significantly toward building up her self-confidence.
It was Carlock who encouraged Grandin to develop her idea to build her hug box (referred to as a "squeeze machine" by Grandin) when she returned from her aunt's farm in Arizona in her senior year of high school. At the age of 18 when she was still attending Mountain Country School, with Carlock's assistance Grandin built the hug box.
Carlock's supportive role in Grandin's life continued even after she
left Mountain Country School. For example, when Grandin was facing
criticism for her hug box at Franklin Pierce College, it was Carlock who suggested that Grandin undertake scientific experiments to evaluate the efficacy of the device.
It was his constant guidance to Grandin to refocus the rigid obsessions
she experienced with the hug box into a productive assignment, that
subsequently, allowed this study undertaken by Grandin to be widely
cited as evidence of Grandin's resourcefulness.
Grandin
is a prominent and widely cited proponent for the humane treatment of
livestock for slaughter. She is internationally famous as a spokesperson
on autism as well.
Autism spectrum
Steve Silberman, in his book NeuroTribes,
wrote that Temple Grandin helped break down years of shame and stigma
because she was one of the first adults to publicly disclose that she
was autistic. Bernard Rimland, a father of a son with autism and author of the book Infantile Autism, wrote the foreword to Grandin's first book Emergence: Labeled Autistic.
Her book was published in 1986. Dr. Rimland wrote "Temple's ability to
convey to the reader her innermost feelings and fears, coupled with her
capacity for explaining mental processes will give the reader an insight
into autism that very few have been able to achieve."
In her later book, Thinking in Pictures, published in 1995, the neurologist Oliver Sacks
wrote at the end of the foreword that the book provided "a bridge
between our world and hers, and allows us to glimpse into a quite other
sort of mind."
In her early writings, Grandin characterized herself as a recovered autistic and, in his foreword, Bernard Rimland
used the term recovered autistic individual. In her later writings she
has abandoned this characterization. Steve Silberman wrote, "It became
obvious to her, however, that she was not recovered but had learned with
great effort to adapt to the social norms of the people around her."
When her book Thinking in Pictures was written in 1995,
Grandin thought that all individuals with autism thought in
photographic-specific images the way she did. By the time the expanded
edition was published in 2006, she had realized that it had been wrong
to presume that every person with autism processed information in the
same way she did. In the 2006 edition, she wrote that there were three
types of specialized thinking. They were: 1. Visual Thinkers like she
is, who think in photographically-specific images. 2. Music and Math
Thinkers – who think in patterns and may be good at mathematics, chess,
and programming computers. 3. Verbal Logic Thinkers – who think in word
details, and she noted that their favorite subject may be history.
In one of her later books, The Autistic Brain: Thinking Across the Spectrum,
the concept of three different types of thinking by autistic
individuals is expanded. This book was published in 2013. An influential
book that helped her to develop her concept of pattern thinking was Clara Claiborne Park's book entitled Exiting Nirvana: A Daughter's Life with Autism. It was published in 2001. The Autistic Brain
also contains an extensive review of scientific studies that provide
evidence that object-visual thinking is different from
spatial-visualization abilities.
Grandin became well-known beyond the American autistic community, 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 characterization of how she feels around neurotypical people. In the mid-1980s Grandin first spoke in public about autism 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.
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 says words are her second
language and that she thinks "totally in pictures", using her vast
visual memory to translate information into a mental slideshow of images
that may be manipulated or correlated.
Grandin 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.
As a proponent of neurodiversity, Grandin does not support eliminating autism genes or treating mildly-autistic individuals. However, she believes that autistic children who are severely handicapped need therapy with applied behavioral analysis. Additionally, she has claimed that she only will attend talks given by autistics who can hold down a career.
Handling livestock
In
1980 Grandin published her first two scientific articles on beef cattle
behavior during handling: "Livestock Behavior as Related to Handling
Facilities Design" in the International Journal for the Study of Animal Problems, Vol. 1, pp. 33–52 and "Observations of Cattle Behavior Applied to the Design of Cattle Handling Facilities", Applied Animal Ethology, Vol. 6, pp. 19–31.
She was one of the first scientists to report that animals are
sensitive to visual distractions in handling facilities such as shadows,
dangling chains, and other environmental details that most people do
not notice. When she was awarded her Ph.D. at the University of
Illinois, she studied the effects of environmental enrichment on pigs.
The title of her dissertation
was "Effect of Rearing Environment and Environmental Enrichment on the
Behavior and Neural Development in Young Pigs". Grandin expanded her
theories in her book, Animals Make Us Human.
In 1993, she edited the first edition of Livestock Handling and Transport.
Grandin wrote three chapters and included chapters from contributors
from around the world. Subsequent editions of the book were published in
2000, 2007, and 2014. In her academic work as a professor at Colorado
State University, her graduate student, Bridgett Voisinet, conducted one
of the early studies that demonstrated that cattle who remained calm
during handling, had higher weight gains. In 1997, when the paper was
published, this was a new concept. The paper is entitled, "Feedlot
Cattle with Calm Temperaments Have Higher Average Daily Gains Than
Cattle with Excitable Temperaments", published in The Journal of Animal Science, Vol. 75, pp. 892–896.
Another important paper published by Grandin was, "Assessment of Stress During Handling and Transport", Journal of Animal Science, 1997, Vol. 75, pp. 249-257.
This paper presented the concept that an animal's previous experiences
with handling could have an effect on how it will react to being handled
in the future, as a new concept in the animal-handling industry.
A major piece of equipment that Grandin developed was a center
track (double rail) conveyor restrainer system for holding cattle during
stunning at large beef slaughtering plants. The first system was
installed in the mid-1980s for calves and a system for large beef cattle
was developed in 1990. This equipment is now being used by many large
meat companies. It is described in "Double Rail Restrainer Conveyor for
Livestock Handling", first published in the Journal of Agricultural Engineering Research, Vol. 4, pp. 327–338
in 1988, and "Transferring results of behavioral research to industry
to improve animal welfare on the farm, ranch, and slaughter plant", Applied Animal Behavior Science, Vol. 8, pp. 215–228, published in 2003.
Grandin also developed an objective, numerical scoring system for assessing animal welfare at slaughtering plants.
The use of this scoring system resulted in significant improvements in
animal stunning and handling during slaughter. This work is described in
"Objective scoring of animal handling and stunning practices in
slaughter plants", Journal of the American Veterinary Medical Association, Vol. 212, pp. 3–39, "The feasibility of using vocalization scoring as an indicator of poor welfare during slaughter", Applied Animal Behavior Science, Vol. 56, pp. 121–128,
and "Effect of animal welfare audits of slaughter plants by a major
fast food company on cattle handling and stunning practices", Journal of the American Veterinary Medical Association, Vol. 216, pp. 848–851.
In 2008, Grandin published Humane Livestock Handling
with contributions by Mark Deesing, a long time collaborator with her.
The book contains a review of the main aspects of cattle behavior and
provides a visual guide in the form of construction plans and diagrams
for the implementation of Grandin's ideas relating to humane livestock
handling.
Other scientific contributions
Grandin
is the author or co-author of more than 60 peer-reviewed scientific
papers on a variety of other animal behavior subjects. Some of the other
subjects are: the effect of hair whorl position on cattle behavior, the
influence of stress prior to slaughter upon meat quality, religious
slaughter, mothering behavior of beef cows, cattle temperament, and
causes of bruising.
Animal welfare
Grandin
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 curved
corrals she adapted with the intention of reducing stress, panic, and
injury in animals being led to slaughter.
This has proved to be a further point of criticism and controversy
among animal activists who have questioned the congruence of a career
built on animal slaughter alongside Grandin's claims of compassion and
respect for animals. While her designs are widely used throughout the
slaughterhouse industry, her claim of compassion for the animals is that
because of her autism she can see the animals' reality from their
viewpoint, that when she holds an animal's head in her hands as it is
being slaughtered, she feels a deep connection to them.
Her business website promotes improvement of standards for slaughterhouses and livestock farms. The "squeeze machine" is sold at US$4,525 by Therafin Corporation.
In 2004, Grandin won a "Proggy" award in the "Visionary" category, from People for the Ethical Treatment of Animals.
One of her notable essays about animal welfare is, "Animals Are Not Things",
in which she posits that technically, animals are property in society,
but the law ultimately gives them ethical protections or rights. She
compares the properties and rights of owning cattle, 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", because legally, a person can
smash or grind up a screwdriver, but cannot torture an animal.
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.
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."
Grandin's work has attracted the attention of philosophers
interested in the moral status of animals. One view found in the
academic literature is that Grandin's method of slaughter is a
significant positive development for animals, but her attempts to
formulate a moral defense of meat-eating have been less successful.
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 animals respect. —Temple Grandin
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. She later stated, for example, that she preferred the science fiction, documentary, and thriller
genre of films and television shows to more dramatic or romantic ones.
Beyond her work in animal science and welfare and autism rights, her
interests include horseback riding, science fiction, movies, and biochemistry.
She has noted in her autobiographical works that autism affects
every aspect of her life. Grandin 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), the device she invented at the age of 18 as a form of stress relief therapy, stating in February 2010 that: "It broke two years ago, and I never got around to fixing it. I'm into hugging people now."
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. She also was the subject of the first episode in the series First Person by Errol Morris.
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 was named one of 2010's one hundred most influential people
in the world by Time magazine. In 2011, she was featured in an episode of the Science documentary series Ingenious Minds. In 2018, Grandin was featured in the documentary This Business of Autism, which explored autism employment and the success story of autism employers such as Spectrum Designs Foundation and was produced by Mesh Omnimedia.
In 2018, Grandin was profiled in the book Rescuing Ladybugs by author and animal advocate Jennifer Skiff
as a "global hero" for "standing her ground and fighting for change
after witnessing the extreme mistreatment of animals" used in farming.
Publications
Emergence: Labeled Autistic (with Margaret Scariano, 1986, updated 1991), ISBN0-446-67182-7
The Learning Style of People with Autism: An Autobiography (1995). In Teaching Children with Autism : Strategies to Enhance Communication and Socialization, Kathleen Ann Quill, ISBN0-8273-6269-2
Thinking in Pictures: Other Reports from My Life with Autism (1996) ISBN0-679-77289-8
The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism (with Sean Barron, 2005), ISBN1-932565-06-X
The Way I See It: A Personal Look At Autism And Asperger's (2008), ISBN9781932565720
Animals Make Us Human: Creating the Best life for Animals (with Catherine Johnson, 2009), ISBN978-0-15-101489-7
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 Scientist. December 1989 (pages 1–11).
Calling All Minds: How to Think and Create Like an Inventor (2018) ISBN1524738204
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