Autism rights movement
Encyclopedia
The autism rights movement (ARM) (also neurodiversity movement or anti-cure movement or autistic culture movement) is a social movement
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. The ARM advocates a variety of goals including a greater acceptance of autistic behaviors; treatment that teaches autistic individuals coping skills rather than treatment focused on imitating behaviors of neurotypical
peers, including extinguishing harmless stimming
, forcing eye contact
and breaking routines; the creation of social networks and events that allow autistic persons to socialize on their own terms; and the recognition of the autistic community as a minority group.
Autism rights or neurodiversity advocates believe that autism spectrum disorders are genetic and should be accepted as a natural expression of the human genome. This perspective is distinct from two wings of the autism cure movement: (1) the perspective that autism spectrum disorders are 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.
The movement is controversial and there are a wide variety of both supportive and critical opinions about the movement among people whose lives are affected by autism.
There are several organizations in the autism rights movement. Some, like the Autistic Self Advocacy Network
have non-profit status while others like Autism Network International
do not.
. Doctors and scientists are not clear on the cause(s) of autism
yet many organizations like Defeat Autism Now! 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. Some advocates believe that common treatments for the behavioral and language delay
s associated with autism, like Applied behavior analysis
therapy, are not only misguided but also unethical.
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. 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 cured. 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 cure autism should not be compared, for example, to curing cancer but instead to the antiquated notion of curing left-handedness.
Variations within the anti-cure movement are diverse. Jim Sinclair, a leader in the movement, argues that autism is essential to a person, not a disease secondary to the person. He says that wishing that an autistic person be cured is equivalent to wishing that he disappear and another completely different person exist in his place. Visions for a future where autism has been eradicated, he believes, is the desire to end the autistic culture
. Some movement members with Asperger syndrome
, who do not have the language delays 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.
Simon Baron-Cohen
, a professor of developmental psychology
at Trinity College, Cambridge
and an autism researcher, expressed the latter view. Baron-Cohen said:
, 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 that knew Sinclair through pen pal lists and autism conferences. The first issue of the newsletter, "Our Voice", was distributed online in November 1992 to an audience of mostly neuro-typical professionals and parents of young children with autism. The number of autistics in the organization grew slowly over the years and became a communication network for like-minded autistics.
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. 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."
The rise of the internet provided more opportunities for autistic individuals to connect and organize. Due to geographical distance, communication and speech patterns of autistic individuals and the domination of neurotypical professionals and family members in established autism organizations, the internet provided an invaluable space for members of the movement to organize and communicate.
claims that the most common therapies for autism are unethical. They argue 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. Michelle Dawson, a Canadian autism self advocate, testified in court against government funding of ABA therapy. 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.
). Some worry that this can prevent autistic people from being born. On February 23, 2005 Joseph Buxbaum of the Autism Genome Project at the Mount Sinai School of Medicine
said there could be a prenatal test for autism within 10 years. However, the genetics of autism
have proven to be extremely complex. In any case, the Autistic Genocide Clock was started in response to this, which counts down to 10 years after Buxbaum made this announcement. 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
.
Some people lament that professionals, such as social workers, may discourage autistics from having children. Some are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born" and that most fetuses with autism would be aborted if prenatal tests for autism are developed.
Autism has been compared to a disease, 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 individuals with autism has been compared to treating a patient with cancer
, though extended over the duration of a normal lifespan. Autistic children have also been described as being held hostage to a psychiatric disorder. Others have used the term "mad child disease" to describe autism, which some autistic individuals and their parents have found highly offensive. 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. 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. Autistic rights activists also reject terming the reported increase in the autistic population as an 'epidemic
' since the word implies autism is a disease.
Attempts have also been made to place a figure on the financial cost of autism, addressed to both scholarly and popular audiences. 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. Michelle Dawson
has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals, and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society.
says that autistic people often score much higher on a nonverbal test of abstract reasoning than on a standard IQ test. Some autistics have claimed that non-autistics are insensitive to their perspectives, and write parodies
based on this, addressing non-autism as a mental disorder characterized by lack of "theory of other minds".[dead links]
Jim Sinclair, who has also been target of similar criticism from very early on, goes into detail about "the politics of opposition to self-advocacy".
The controversy has erupted on autism e-mail lists, where some parents are "derided" as "curebies" and "portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating". 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.
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.
individuals.
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 "cure" that will reduce their children's suffering. 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 "rescue" autistic children. Some critics also fear that the movement will prevent other autistic children from receiving treatment. 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.
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
, despite the existence of low-functioning autism rights advocates such as Amanda Baggs
. Lenny Schafer
argues that if one would change every use of autism to read Asperger syndrome the movement might "make sense", although the upcoming incorporation of Asperger syndrome into the autism diagnosis in the DSM-V has been used as a counterargument by the autism rights movement.
Sue Rubin
, the subject of the Oscar
-nominated documentary Autism Is A World
, is an example of an adult with autism 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.".
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 -- autistic adults such as Amanda Baggs
use their own writing and videos to demonstrate that it is possible for severely disabled autistics to be autism rights advocates. 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.
Social movement
Social movements are a type of group action. They are large informal groupings of individuals or organizations focused on specific political or social issues, in other words, on carrying out, resisting or undoing a social change....
that encourages autistic
Autism spectrum
The term "autism spectrum" is often used to describe disorders that are currently classified as pervasive developmental disorders. Pervasive developmental disorders include autism, Asperger syndrome, Childhood disintegrative disorder, Rett syndrome and Pervasive Developmental Disorder Not Otherwise...
people, their caregivers and society to adopt a position of neurodiversity
Neurodiversity
Neurodiversity is a "controversial concept [that] ... regards atypical neurologicaldevelopment as a normal human difference". According to Jaarsma and Welin , the "neurodiversity movement was developed in the 1990s by online groups of autistic persons...
, accepting autism as a variation in functioning rather than a mental disorder to be cured. The ARM advocates a variety of goals including a greater acceptance of autistic behaviors; treatment that teaches autistic individuals coping skills rather than treatment focused on imitating behaviors of neurotypical
Neurotypical
Neurotypical is a term that was coined in the autistic community as a label for people who are not on the autism spectrum: specifically, neurotypical people have neurological development and states that are consistent with what most people would perceive as normal, particularly with respect to...
peers, including extinguishing harmless stimming
Stimming
Stimming is a repetitive body movement, such as hand flapping, that is hypothesized to stimulate one or more senses. The term is shorthand for self-stimulation. Repetitive movement, or stereotypy, is often referred to as stimming under the hypothesis that it has a function related to sensory input....
, forcing eye contact
Eye contact
Eye contact is a meeting of the eyes between two individuals.In human beings, eye contact is a form of nonverbal communication and is thought to have a large influence on social behavior. Coined in the early to mid-1960s, the term has come in the West to often define the act as a meaningful and...
and breaking routines; the creation of social networks and events that allow autistic persons to socialize on their own terms; and the recognition of the autistic community as a minority group.
Autism rights or neurodiversity advocates believe that autism spectrum disorders are genetic and should be accepted as a natural expression of the human genome. This perspective is distinct from two wings of the autism cure movement: (1) the perspective that autism spectrum disorders are 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.
The movement is controversial and there are a wide variety of both supportive and critical opinions about the movement among people whose lives are affected by autism.
There are several organizations in the autism rights movement. Some, like the Autistic Self Advocacy Network
Autistic Self Advocacy Network
The Autistic Self-Advocacy Network or ASAN is a 501 nonprofit advocacy organization for individuals on the Autism spectrum, and is run by Autistic people. ASAN believes that the goal of Autism advocacy should be a world in which Autistic people enjoy the same access, rights, and opportunities as...
have non-profit status while others like Autism Network International
Autism Network International
Autism Network International is an advocacy organization run by and for autistic people. ANI's principles involve the anti-cure perspective, the perspective that there should not be a goal to "cure" people of autism.-Autreat:...
do not.
Anti-cure perspective
Curing autism is a controversial and politicized issuePoliticized issue
A politicized issue or hot-button issue is a social, economic, theological, spiritual, scientific or legal issue which has become a political issue, as a result of deliberate action or otherwise, whereby people become politically active over that issue....
. Doctors and scientists are not clear on the cause(s) of autism
Causes of autism
Many causes of autism have been proposed, but understanding of the theory of causation of autism and the other autism spectrum disorders is incomplete. Heritability contributes about 90% of the risk of a child developing autism, but the heritability of autism is complex and typically it is...
yet many organizations like Defeat Autism Now! and Autism Speaks
Autism Speaks
Autism Speaks is the world's largest autism advocacy organization that sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public. It was founded in February 2005 by Bob Wright, vice chairman of General Electric, and by his wife Suzanne, a...
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. Some advocates believe that common treatments for the behavioral and language delay
Language delay
Language delay is a failure to develop language abilities on the usual developmental timetable. Language delay is distinct from speech delay, in which the speech mechanism itself is the focus of delay...
s associated with autism, like Applied behavior analysis
Applied Behavior Analysis
Applied behavior analysis is a science that involves using modern behavioral learning theory to modify behaviors. Behavior analysts reject the use of hypothetical constructs and focus on the observable relationship of behavior to the environment...
therapy, are not only misguided but also unethical.
The anti-cure perspective endorsed by the movement is a view that autism
Autism
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their...
is not a disorder, but a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome. 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 cured. 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 cure autism should not be compared, for example, to curing cancer but instead to the antiquated notion of curing left-handedness.
Variations within the anti-cure movement are diverse. Jim Sinclair, a leader in the movement, argues that autism is essential to a person, not a disease secondary to the person. He says that wishing that an autistic person be cured is equivalent to wishing that he disappear and another completely different person exist in his place. Visions for a future where autism has been eradicated, he believes, is the desire to end the autistic culture
Sociological and cultural aspects of autism
Sociological and cultural aspects of autism come into play with recognition of autism, approaches to its support services and therapies, and how autism affects how we define personhood. The autism rights movement is based on a belief that autism is a different way of being and not a disorder to be...
. Some movement members with Asperger syndrome
Asperger syndrome
Asperger's syndrome that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development...
, who do not have the language delays 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.
Simon Baron-Cohen
Simon Baron-Cohen
Simon Baron-Cohen FBA is professor of Developmental Psychopathology in the Departments of Psychiatry and Experimental Psychology at the University of Cambridge in the United Kingdom. He is the Director of the University's Autism Research Centre, and a Fellow of Trinity College...
, a professor of developmental psychology
Developmental psychology
Developmental psychology, also known as human development, is the scientific study of systematic psychological changes, emotional changes, and perception changes that occur in human beings over the course of their life span. Originally concerned with infants and children, the field has expanded to...
at Trinity College, Cambridge
Trinity College, Cambridge
Trinity College is a constituent college of the University of Cambridge. Trinity has more members than any other college in Cambridge or Oxford, with around 700 undergraduates, 430 graduates, and over 170 Fellows...
and an autism researcher, expressed the latter view. Baron-Cohen said:
History
Jim Sinclair was the first individual to communicate the anti-cure or autism rights perspective in the late 1980s. In 1992 he co-founded the Autism Network InternationalAutism Network International
Autism Network International is an advocacy organization run by and for autistic people. ANI's principles involve the anti-cure perspective, the perspective that there should not be a goal to "cure" people of autism.-Autreat:...
, 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 that knew Sinclair through pen pal lists and autism conferences. The first issue of the newsletter, "Our Voice", was distributed online in November 1992 to an audience of mostly neuro-typical professionals and parents of young children with autism. The number of autistics in the organization grew slowly over the years and became a communication network for like-minded autistics.
In 2004 Michelle Dawson challenged applied behavior analysis
Applied Behavior Analysis
Applied behavior analysis is a science that involves using modern behavioral learning theory to modify behaviors. Behavior analysts reject the use of hypothetical constructs and focus on the observable relationship of behavior to the environment...
(ABA) on ethical grounds. She testified in Auton v. British Columbia
Auton (Guardian ad litem of) v. British Columbia (Attorney General)
Auton v. British Columbia , [2004] 3 S.C.R. 657, is a leading decision of the Supreme Court of Canada wherein the Court ruled that government funding for non-core medically necessary treatments is not protected under section 15 of the Canadian Charter of Rights and Freedoms.-Background:The...
against the required government funding of ABA. That same year The New York Times
The New York Times
The New York Times is an American daily newspaper founded and continuously published in New York City since 1851. The New York Times has won 106 Pulitzer Prizes, the most of any news organization...
covered the autism rights perspective by publishing Amy Harmon's article, "How about not curing us? Some autistics are pleading."
The rise of the internet provided more opportunities for autistic individuals to connect and organize. Due to geographical distance, communication and speech patterns of autistic individuals and the domination of neurotypical professionals and family members in established autism organizations, the internet provided an invaluable space for members of the movement to organize and communicate.
Groups in the movement
- Autism Network InternationalAutism Network InternationalAutism Network International is an advocacy organization run by and for autistic people. ANI's principles involve the anti-cure perspective, the perspective that there should not be a goal to "cure" people of autism.-Autreat:...
(ANI) is a self-advocacySelf-advocacySelf-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own...
organization that was founded in 1992 by autistic individuals. - Autistic Self Advocacy NetworkAutistic Self Advocacy NetworkThe Autistic Self-Advocacy Network or ASAN is a 501 nonprofit advocacy organization for individuals on the Autism spectrum, and is run by Autistic people. ASAN believes that the goal of Autism advocacy should be a world in which Autistic people enjoy the same access, rights, and opportunities as...
(ASAN) is a self-advocacySelf-advocacySelf-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own...
organization founded by Ari Ne'eman to represent the autistic community and further the autism rights movement. - Aspies For FreedomAspies For FreedomAspies For Freedom is a solidarity and campaigning group which aims at raising public awareness of the autism rights movement. The term "Aspies" refers to people who have been diagnosed with Asperger syndrome, but the group also welcomes anyone on the autism spectrum.-Aims:The aim of Aspies For...
is a web-based organization for the autism community that has more than 20,000 members. - Don't Play Me, Pay Me is a UK campaign, focusing on Asperger syndrome, encouraging and supporting actors with neurological conditions
Events and activities
- The ANI annually hosts AutreatAutism Network InternationalAutism Network International is an advocacy organization run by and for autistic people. ANI's principles involve the anti-cure perspective, the perspective that there should not be a goal to "cure" people of autism.-Autreat:...
, a retreat-style conference developed to allow autistic individuals to meet, socialize and learn advocacy skills in an "autistic-friendly" environment. It was founded in 1996. - In 2005 Aspies for Freedom founded Autistic Pride DayAutistic Pride DayAutistic Pride Day is a celebration of the neurodiversity of people on the autism spectrum on June 18 each year. Autistic pride is pride in autism, about shifting views of autism from "disease" to "difference"...
. Every year on June 18 events are held across the globe. - 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 CenterNYU Child Study Center- A new era :The NYU Child Study Center is poised to begin a new and exciting chapter of excellence in cutting-edge care, research and education with the appointment of Glenn Saxe, M.D., as the new chairman of the Department of Child and Adolescent Psychiatry at the NYU School of Medicine and...
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". The second ads were published by PETAPetaPeta can refer to:* peta-, an SI prefix denoting a factor of 1015* Peta, Greece, a town in Greece* Peta, the Pāli word for a Preta, or hungry ghost in Buddhism* Peta Wilson, an Australian actress and model* Peta Todd, English glamour model...
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 caseinGluten-free, casein-free dietA gluten-free casein-free diet eliminates dietary intake of the naturally occurring proteins gluten and casein .-Controversial autism diet:...
in milk. Phone calls, letters and petitions organized by ASAN resulted in the removal of these ads. - 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, NY aims to help autistics cope with a non-autistic world, but stresses that it is acceptable and expected that they "act autistic".
Autism treatment
Aspies For FreedomAspies For Freedom
Aspies For Freedom is a solidarity and campaigning group which aims at raising public awareness of the autism rights movement. The term "Aspies" refers to people who have been diagnosed with Asperger syndrome, but the group also welcomes anyone on the autism spectrum.-Aims:The aim of Aspies For...
claims that the most common therapies for autism are unethical. They argue that ABA
Applied Behavior Analysis
Applied behavior analysis is a science that involves using modern behavioral learning theory to modify behaviors. Behavior analysts reject the use of hypothetical constructs and focus on the observable relationship of behavior to the environment...
therapy and restriction of stimming "and other autistic coping mechanisms" are mentally harmful, that aversion therapy
Aversion therapy
Aversion therapy is a form of psychological treatment in which the patient is exposed to a stimulus while simultaneously being subjected to some form of discomfort...
and the use of restraints are physically harmful, and that alternative treatments like chelation
Chelation
Chelation is the formation or presence of two or more separate coordinate bonds between apolydentate ligand and a single central atom....
are dangerous. Michelle Dawson, a Canadian autism self advocate, testified in court against government funding of ABA therapy. 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.
Elimination of autism
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 autismHeritability of autism
The heritability of autism is the proportion of autism that can be explained by genetic variation; if the heritability of a condition is high, then the condition is considered to be primarily genetic...
). Some worry that this can prevent autistic people from being born. On February 23, 2005 Joseph Buxbaum of the Autism Genome Project at the Mount Sinai School of Medicine
Mount Sinai School of Medicine
Mount Sinai School of Medicine is an American medical school in the borough of Manhattan in New York City, currently ranked among the top 20 medical schools in the United States. It was chartered by Mount Sinai Hospital in 1963....
said there could be a prenatal test for autism within 10 years. However, the genetics of autism
Causes of autism
Many causes of autism have been proposed, but understanding of the theory of causation of autism and the other autism spectrum disorders is incomplete. Heritability contributes about 90% of the risk of a child developing autism, but the heritability of autism is complex and typically it is...
have proven to be extremely complex. In any case, the Autistic Genocide Clock was started in response to this, which counts down to 10 years after Buxbaum made this announcement. The public has started to debate the ethics
Ethics
Ethics, also known as moral philosophy, is a branch of philosophy that addresses questions about morality—that is, concepts such as good and evil, right and wrong, virtue and vice, justice and crime, etc.Major branches of ethics include:...
involved in the possible elimination of a genotype
Genotype
The genotype is the genetic makeup of a cell, an organism, or an individual usually with reference to a specific character under consideration...
that has liabilities and advantages, which may be seen as tampering with natural selection
Natural selection
Natural selection is the nonrandom process by which biologic traits become either more or less common in a population as a function of differential reproduction of their bearers. It is a key mechanism of evolution....
.
Some people lament that professionals, such as social workers, may discourage autistics from having children. Some are concerned that the "ultimate cure will be a genetic test to prevent autistic children from being born" and that most fetuses with autism would be aborted if prenatal tests for autism are developed.
Perception of autism
Neurodiversity
Neurodiversity is a "controversial concept [that] ... regards atypical neurologicaldevelopment as a normal human difference". According to Jaarsma and Welin , the "neurodiversity movement was developed in the 1990s by online groups of autistic persons...
, with an attendant focus on the burden placed on society in caring for autistic individuals. Caring for individuals with autism has been compared to treating a patient with cancer
Cancer
Cancer , known medically as a malignant neoplasm, is a large group of different diseases, all involving unregulated cell growth. In cancer, cells divide and grow uncontrollably, forming malignant tumors, and invade nearby parts of the body. The cancer may also spread to more distant parts of the...
, though extended over the duration of a normal lifespan. Autistic children have also been described as being held hostage to a psychiatric disorder. Others have used the term "mad child disease" to describe autism, which some autistic individuals and their parents have found highly offensive. Margaret Somerville
Margaret Somerville
Margaret Anne Ganley Somerville, AM, FRSC is a conservative Australian/Canadian ethicist and academic. She is the Samuel Gale Professor of Law, Professor in the Faculty of Medicine and the Founding Director of the Faculty of Law's Centre for Medicine, Ethics and Law at McGill...
, 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. 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. Autistic rights activists also reject terming the reported increase in the autistic population as an 'epidemic
Epidemic
In epidemiology, an epidemic , occurs when new cases of a certain disease, in a given human population, and during a given period, substantially exceed what is expected based on recent experience...
' since the word implies autism is a disease.
Attempts have also been made to place a figure on the financial cost of autism, addressed to both scholarly and popular audiences. 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
Eugenics
Eugenics is the "applied science or the bio-social movement which advocates the use of practices aimed at improving the genetic composition of a population", usually referring to human populations. The origins of the concept of eugenics began with certain interpretations of Mendelian inheritance,...
movement in the early 20th century—a movement currently in disrepute. Michelle Dawson
Michelle Dawson
Michelle Dawson is an individual diagnosed with autism and an autism researcher. She has written a paper challenging the ethical and scientific foundations of Applied Behavior Analysis -based autism interventions. She also challenged the medical necessity of ABA for individuals with autism in...
has pointed out that no effort has been made to examine the cost of 'eliminating the disease' to autistic individuals, and she, as well as others, have also pointed out the valuable contributions autistic individuals can, and have made to society.
Autistic traits
Some autistic rights activists believe some characteristics described as being autistic traits are actually misconceptions. Michelle Dawson has disputed the belief that 75% of autistic people have low intelligence. Psychologist Laurent Mottron of Hôpital Rivière-des-Prairies in MontrealMontreal
Montreal is a city in Canada. It is the largest city in the province of Quebec, the second-largest city in Canada and the seventh largest in North America...
says that autistic people often score much higher on a nonverbal test of abstract reasoning than on a standard IQ test. Some autistics have claimed that non-autistics are insensitive to their perspectives, and write parodies
Parody
A parody , in current usage, is an imitative work created to mock, comment on, or trivialise an original work, its subject, author, style, or some other target, by means of humorous, satiric or ironic imitation...
based on this, addressing non-autism as a mental disorder characterized by lack of "theory of other minds".[dead links]
Jim Sinclair, who has also been target of similar criticism from very early on, goes into detail about "the politics of opposition to self-advocacy".
The controversy has erupted on autism e-mail lists, where some parents are "derided" as "curebies" and "portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating". 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
Empathy
Empathy is the capacity to recognize and, to some extent, share feelings that are being experienced by another sapient or semi-sapient being. Someone may need to have a certain amount of empathy before they are able to feel compassion. The English word was coined in 1909 by E.B...
of anti-cure activists prevent them from seeing what is in the hearts of pro-cure advocates.
Functioning labels
Some autistic activists say it is not easy to distinguish between high and low functioning. 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.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.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.
Criticisms and counter-movements
The movement has been criticized for its alleged failure to incorporate diversity and include certain subgroups within the autistic community. It has also been criticized because some of its members write material which is insulting to neurotypicalNeurotypical
Neurotypical is a term that was coined in the autistic community as a label for people who are not on the autism spectrum: specifically, neurotypical people have neurological development and states that are consistent with what most people would perceive as normal, particularly with respect to...
individuals.
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 "cure" that will reduce their children's suffering. 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 "rescue" autistic children. Some critics also fear that the movement will prevent other autistic children from receiving treatment. 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.
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
High-functioning autism
High-functioning autism is an informal term applied to autistic people who are deemed to be "higher functioning" than other autistic people, by one or more metrics. There is no consensus as to the definition. HFA is not yet a recognised diagnosis in the DSM-IV-TR or the ICD-10.The amount of...
or have Asperger syndrome
Asperger syndrome
Asperger's syndrome that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development...
, despite the existence of low-functioning autism rights advocates such as Amanda Baggs
Amanda Baggs
Amanda Baggs is an autism rights activist. In January 2007 she published a video on YouTube entitled In My Language describing her experiences as an autistic person, which became the subject of several articles on CNN...
. Lenny Schafer
Lenny Schafer
Lenny Schafer is the adoptive parent of an autistic child. He is the editor of the "Schafer Autism Report", an autism publication. He was a recipient of the Doug Flutie Jr. Award—given in honor of Doug Flutie Jr., the son of New England Patriot, Doug Flutie—who has autism...
argues that if one would change every use of autism to read Asperger syndrome the movement might "make sense", although the upcoming incorporation of Asperger syndrome into the autism diagnosis in the DSM-V has been used as a counterargument by the autism rights movement.
Sue Rubin
Sue Rubin
Sue Rubin is a functionally non-verbal published autistic author who was the subject of the Oscar-nominated documentary Autism Is A World in which she communicated via the controversial communication technique of facilitated communication....
, the subject of the Oscar
Academy Awards
An Academy Award, also known as an Oscar, is an accolade bestowed by the American Academy of Motion Picture Arts and Sciences to recognize excellence of professionals in the film industry, including directors, actors, and writers...
-nominated documentary Autism Is A World
Autism Is a World
Autism Is a World is a short subject documentary film written by Sue Rubin, a woman with autism who learned to communicate via facilitated communication, produced and directed by Gerardine Wurzburg and co-produced by the CNN cable network. It was nominated in the 77th annual Academy Awards for...
, is an example of an adult with autism 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.".
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 -- autistic adults such as Amanda Baggs
Amanda Baggs
Amanda Baggs is an autism rights activist. In January 2007 she published a video on YouTube entitled In My Language describing her experiences as an autistic person, which became the subject of several articles on CNN...
use their own writing and videos to demonstrate that it is possible for severely disabled autistics to be autism rights advocates. 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.
External links
- Autism National Committee Promotes the right to self-determination
- AutisticSociety.org - Autistic Society
- Auties.org - Self employment and advocacy site for people on the spectrum, founded by Donna Williams
- Autreach - a network of UK Autism disabled people's organisations
- Autistic Self Advocacy Network
- Uncommongenius.org - Civil Rights for Autistics
- The Autistic Rights Movement UK - a not-for-profit voluntary unincorporated association. "The first UK national organisation run entirely by autistic people".
- Autism Support Network