THE AUTISM RIGHTS MOVEMENT
The Autism rights movement (which has also been
called autistic self-advocacy movement and autistic liberation movement)
was started by adult autistic individuals in order to advocate and
demand tolerance for what they refer to as neurodiversity. The movement
is supported by some neurotypicals including parents of autistic
children. The movement is controversial and has been criticized
by some parents of autistic children who disagree with its anti-cure
and pro-neurodiversity views.
Autism as just a different way of being
The basis of the movement is the view that Autism
is not a disorder but simply a different way of being. They believe
a cure for Autism would destroy the original personality of the
autistic person in a misguided attempt to replace them with a different
(neurotypical) person. Some of the goals of the movement are to
challenge the ethics and science of interventions such as Applied Behavior Analysis (ABA) and psychiatric hospitals; to include
autistic adults in Autism organizations and provide services for
autistic adults; and to challenge descriptions of Autism
that they consider to be pitiful, insulting, and/or incorrect.
Aspies For Freedom
Aspies For Freedom is a group which is at the
forefront of the Autism rights movement. The term "Aspies"
refers to high-functioning autistics, or those with Asperger's Syndrome.
The aim of Aspies For Freedom (AFF) is to educate the public that
Autism is not always a disability, and that there are advantages
as well as disadvantages. The group also campaigns against what
is sees as abusive forms of therapy, and against the idea of a cure
for Autism. The AFF hopes to have autistic people recognized as
a minority status group.
The usage of the infinity symbol as a representation
of Autism, started by Aspies For Freedom in June 2004, was a reaction
to the negative connotations associated with the jigsaw symbol commonly
used by parents to represent Autism. The jigsaw symbol was seen
by much of the autistic community as an insulting reference to the
fact that autistics can appear puzzling, in need of "fitting
in" with society, or as having "a bit missing". It
was felt that the infinity symbol better represents autistics by
representing logic, persistence, perseverance, and unity of form.
The website of Aspies For Freedom contains other
resources for autistic people more oriented towards personal experiences
of an autistic, including: message forums, video programming, and
a MediaWiki-based encyclopedia. The group also runs an IRC chat
network for autistic people on chatAutism.com as online chatting
is sometimes seen as essential to some with Autism as a main source
of social communication. Offline branches of Aspies For Freedom
include groups in Australia and Wales for those who wish to meet
in real life.
Others in the movement
Organized groups of the movement include: Autism
Network International (ANI), which is a self-advocacy organization
founded in 1992 run for and by autistic people and which hosts an
annual conference called Autreat; and Aspies For Freedom, an activist
group founded by Amy and Gareth Nelson in 2004 which started Autistic
Pride Day and protested against the Judge Rotenberg Educational
Center. Some smaller regional groups of autistic advocates have
also been founded, such as the Asperger Adults of Greater Washington.
A number of individuals have played an important
role in this movement. Amanda Baggs has written for autistics.org,
one of the most well known anti-cure Autism websites. She was featured
in an article on CNN in February, 2007.
Michelle Dawson is an autistic person and Autism
researcher. She has challenged the ethics and science of applied
behavior analysis and what she considers to be exclusion of autistic
adults in the Autism Society of Canada.
Jasmine O'Neill is an author who has argued for
a pro-neurodiversity view.
Joe Mele: former member of Aspies for Freedom
who held an anti-cure protest that was cited by the media.
Kassiane Sibley is an Autism rights blogger operating
under the pen name Rett Devil.
Jim Sinclair is a co-founder of Autism Network
International and author of the essay Don't Mourn for Us,
a widely distributed anti-cure essay.
Donna Williams has endorsed the Aspies For Freedom
organization.
The essays of some individuals in the movement,
including Amanda Baggs and Jim Sinclair, have been used as reading
assignments in a class at the University of Wisconsin-Madison.
Some websites play a role in the movement. Although
there are a number of personal websites that express pro-neurodiversity
and/or anti-cure views, some websites are more well known than others.
The more well known or "prominent" websites include: Autistics.
Org, founded in December 1998 and started a number of Internet campaigns;
and neurodiversity.com is a well known website in the movement and
it has replied to some of the movement's critics.
Computers for communication
The use of the Internet has made it possible for
autistics to present their perspective when they do not have the
communication skills to do so offline. Even some mute autistics,
such as Jasmine O'Neill, still write very well and present a case
for societal acceptance of Autism.
These autistics do not desire a cure, but rather to be given opportunities
to use their unique skills and perceptions in useful ways.
Adult issues
Adult inclusion
Some in the autistic rights movement believe the
status quo of Autism issues focuses too much on children and parents,
and tends to exclude autistic adults. They point to various Autism
organizations like Autism Society of America that have a child as
a logo and they feel parents have more power than autistic adults
in Autism organizations. Michelle Dawson believes that the Autism
Society of Canada excludes autistic adults. Autistic people oppose
this because they feel autistics, not non-autistic parents, should
be the primary focus of Autism organizations. They also believe
there are more services for autistic children and their parents
than for autistic adults, and some advocates of adult inclusion
believe that some services and resources for autistic children are
actually more for the parents (such as respite).
Accuracy of information about autistic adults
Autistic rights activists believe many people
considered Autism experts publish inaccurate information about what
happens to autistic children when they become adults. They claim
that while many autistic adults in the Autism rights movement have
significant difficulties in life, some of the pessimistic predictions
that had been given to them when they were children did not come
true. Because they consider these inaccurate predictions to be false,
autistic rights activists believe what they consider to be pessimistic
statements from Autism experts of today are also false.
Adult diagnosis
Autistic adults claim that the definition afforded
in an Autism diagnosis is designed for children and not for adults,
which makes the parameters unworkable and difficult in maintaining/obtaining
a proper diagnosis. Because people change as they grow to adulthood,
they may no longer fit the official model of an autistic individual.
In addition, Autism diagnosis may be taken less seriously when it
is made in for an adult rather than for a child, the idea being
that if a person were really autistic, it would have been noticed
in childhood.
Some autistic adults respond to this by citing
the relative ignorance about Autism on the part of professionals
and the general public, even ten years ago, compared to what is
known in the present, and that autistic children were often misdiagnosed
as learning-disabled, lazy, or as having a thought disorder. Even
in the 1980s, professionals specializing in Autism contributed to
a peer-reviewed journal called the Journal of Autism and Childhood
Schizophrenia. A deep analysis of these types of journals can show
a misaligned or continually changing view of Autism from non-autistics,
which is often based on simpler understanding by non-autistics,
and not a clear understanding for autistics.
A common reason for autistic adults to seek a
diagnosis is to obtain services and/or accommodation for difficulties
associated with Autism. Some people, however, only seek a diagnosis
for the sake of a personal identity as a confirmation of why they
feel "different" in a neurotypical society, or out of
simple curiosity. Sometimes autistic adults find a self-diagnosis
to be sufficient for this purpose (though some prefer an "official"
diagnosis for credible confirmation). Those who have diagnosed themselves
as autistic would not necessarily be seen as autistic by doctors
and may instead be suffering from Medical Textbook Syndrome (reading
about a condition and thinking they have it), or they may have some
truly insightful views as people who can be categorized within the
lesser known parts of the autism spectrum.
Services and accommodation
The Autism rights movement desires more services
and accommodations for autistic adults. They also desire autistic
adults to have equal opportunity in employment and in education.
Misconceptions of autistic traits
Some autistic rights activists believe some characteristics
described as being autistic traits are actually misconceptions and
desire to educate the population about what they believe are the
real reasons these alleged misconceptions occur. The website
Getting the Truth Out is one website that argues that there
are misconceptions of autistic traits. The website also opposes
the way Autism is allegedly perceived by society.
As of 2006, some people have begun to subscribe
to Simon Baron-Cohen's theory that autistic people lack a "theory
of other minds"; that is, autistic people are unaware that
other people do not necessarily think or know the same things that
they do. However, Baron-Cohen's theory has not been proven to be
true of all autistics. Some autistics have suggested that they are
only perceived to lack a theory of mind because autistic people
do not necessarily communicate with others in the same ways people
who are not autistic do. This would prevent others' knowing whether
autistics have a theory of mind or not. Some autistics who have
difficulty with sensory input might be less likely to be able to
interpret other people's thoughts and knowledge through observation.
Some autistics have observed 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".
It is reported that 75% to 85% of autistic people
are mentally retarded. Some people believe autistics are incorrectly
diagnosed with intellectual disability because of lack of an ability
to communicate what they know, and due to fundamental flaws in intelligence
testing. According to the original definition by Aaron Rosanoff
(as a segment of temperament in his "theory of personality",
published circa 1915), it is also a factor that it might be possible
to be strongly autistic, physically normal, and highly intelligent,
thus escaping diagnosis as children, and consequently not appearing
in current statistics. Gifted children sometimes have autistic traits,
which may suggest an association.
Although some people believe autistic people have
no emotions and no sense of humor (despite the existence of comedians
with the condition), some autistic people reject this and report
that they do experience a range of emotions, and indeed have a tremendous
sense of humor, but just one that a neurotypical cannot relate to
- just as the autistic cannot relate to the neurotypical's humor.
This again comes down to a majority perception of 'the norm', when
there may not be one. Autistics with Asperger's Syndrome may actually
be more emotionally sensitive than a neurotypical, but because of
different expressions of emotion, they often come across as rude,
abrupt and emotionless. This may have contributed to the view that
people with Autism are emotionless, especially to those who may
not wish to look deeper.
The perception that autistics are emotionless
may come from the fact that autistics may be more likely to keep
their emotions to themselves - for example, not laughing when they
find something funny. Autistics may also have different emotional
reactions from what people without Autism may expect. Noting a different
reaction than they were expecting may prompt people without Autism
to perceive a general lack of emotion in autistic people. Autistics
may also be amused by things that non-autistics would not find funny.
Autistic adults such as Jerry Alter and Jessy Park report being
greatly amused by concepts "such as eating roads or flowers
are growing on a telephone", which may be seen as reminiscent
of Monty Python-type British absurd humor.
The movement has been criticized by autism professionals
and parents of autistic children who believe the goals of the movement
will not help autistic children. There are some critics of the movement
who still support some of the movement's goals despite opposing
other goals.
Criticism of the Autism Rights Movement
Critics of the movement argue that the autism spectrum people in the movement are high functioning and/or Asperger's
and that they have the ability to communicate. Lenny Schafer, for
example, argues that those in the movement are Asperger autistics,
as opposed to Kanner autistics. He says that if they would change
every use of Autism to read Asperger syndrome then the movement
might "make sense".
They argue that low functioning autistic people
have much less ability to communicate, but that the movement's activists
clearly have the ability to write eloquently, and they believe that
those who have less ability to communicate are likely to want or
need very different things from those who can communicate more readily.
Bobby Newman said in an issue of the Schafer Autism Report
that he believes that those without basic skills of self-care would
not want those who are capable of communication to speak on their
behalf. (Part of the difficulty autistic activists have with such
statements is that they seem to contain faulty logic; many autistics
who need help with self-care are nonetheless capable of communication.)
The website Autism: A Debilitating Disease,
Not a Culture argues that the movement's goals of understanding
autistic people and changing the world to accommodate them is not
enough because understanding will not end difficulties such as self-injury
in autistic people and will not teach them to communicate. The website
also argues that only the opinions of autism professionals are valid,
and not the opinion of autistic activists, because they argue that
it is those who are experts in a field who can study a disorder,
not those who have the disorder.
Some critics of the movement believe Michelle
Dawson played an important role in Auton v. British Columbia
and is responsible for Canadian children not receiving applied behavioral
analysis, which is considered an important therapy by the people
who make this criticism. These critics believe ABA has been scientifically
proven to be effective and gives autistic children the best chance
of success in adulthood. 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 saying that it is harmful to deny medically necessary
and appropriate treatment to autistic children who need it. Weintraub
said she does not want ideology to triumph over the welfare of autistic
children.
However, it is generally understood among the
medical profession that whilst some symptoms of autism can be treated
with drugs (e.g. aggression), Autism itself cannot be treated with
drugs.
Some critics feel that because a lack of empathy
is considered an autistic trait, the autistic traits of the activists
of the movement cause them to lack empathy towards parents.
Responses from the movement
The autism rights movement has responded to its
critics. The owners of the website autistics. org say that they
receive e-mails from parents of autistic children in which parents
claim their own children are different and have more difficulties
than them. The people at autistics. org argue that when the parents
describe their children's difficulties, they are describing the
children to have difficulties that range from very similar to their
own difficulties that they had as children, to very similar to their
current difficulties as adults. autistics. org also says that their
claims that they: don't want a cure, see Autism as a part of who
they are, and don't want attempts at help that may actually be harmful
are wrongly perceived by their critics as not wanting help with
anything and living under entirely positive circumstances.
Activists in the movement have responded to criticisms
that say they are high functioning or Asperger's by saying that
some of them have been called low functioning as children by professionals,
some of them can write but have no oral speech, and that some of
them have periods of time where any form of communication is impossible.
They also say it is not true that all autistic advocates are diagnosed
with Asperger's syndrome and that some of the most outspoken ones
are autistic. When critics claim that the people in the movement
are Asperger's and not autistic, the people in the autism rights
movement see this as an attempt to diagnose them via the Internet.
A. M. Baggs 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 examples of autistic people who were denied services
because they have IQs above 70. Some people are also irritated by
the perception created by Rain Man that all autistics have
savant abilities, although the reality is that the psychiatrist
in the film said that Dustin Hoffman's character Raymond Babbitt
was very high functioning, unlike many other autistics, who are
unable to speak. A countercriticism of this Rain Man defense
is that the film was clearly made at a time when understanding of
autism was less developed, and is not reflective of the reality.
Raymond Babbitt is not considered high-functioning by people in
the autism rights movement, who point out that Albert
Einstein may have met the diagnostic criteria for high-functioning
autism.
In an article titled History of ANI,
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". He notes, for example, that a common tactic
is denying that "the persons mounting the challenge are really
members of the group to which they claim membership". Sinclair
illustrates the point with an analogy regarding Frederick Douglass,
a nineteenth-century African American who became a well-known abolitionist
writer and speaker. Douglass was after some time suspected of being
an impostor because he was well spoken and educated, so he did not
fit the stereotype of black slaves. Douglass also differs from majority
black opinion, in that he supported the idea that blacks should
be left to sink or swim just like everybody else.
A.M. Baggs who has been published in the Autism
Information Library responded to Bobby Newman's argument by saying
that she was once in the situation Newman describes and would have
wanted activists to stop her from receiving treatment she felt was
harmful.
Autistics. Org has responded to Kit Weintraub's
wish to remove her son's autistic symptoms so that he will make
friends by saying that when someone is bullied or ostracized for
a quality, it is because of people who are intolerant and not the
fault of people who are different.
Some claim that autistic activists cannot claim
expertise in Autism. Furthermore, some people consider autistic
advocates such as Michelle Dawson to be, in fact, experts in Autism
and some autistic people have degrees in psychology. Some argue
that given the perseverative traits of many autistics, it is possible
that some of them have acquired expert-level knowledge in the area.
Phil Schwarz has responded to claims that the
autistic advocates are higher functioning than autistic children
by saying it is not always reasonable to compare the abilities of
an autistic child with those of an autistic adult.
Some autistic authors such as A.M. Baggs have
claimed that this is not always the case that anti-cure autistics
have mild difficulties. A common complaint is that anti-cure advocates
are clearly able to articulate complex opinions in writing, which
is seen by some parents as inconsistent with a diagnosis of autism.
Autism rights movement members wonder why such parents rule out
the possibility that their children will be able to do the same
later in life. Autistics who oppose a cure say they may experience
extreme difficulties on a daily basis, and that they oppose being
cured despite these difficulties because they believe autism is
a fundamental part of who they are.
Click here
to read the fact sheet on Community, Politics & Culture of Autism.
Click here for the full
range of Asperger's and Autism fact sheets at www.autism-help.org
This autism fact sheet is licensed under the GNU
Free Documentation. It is derivative of an Autism and Asperger's
syndrome-related articles at http://en.wikipedia.org |
