It is made up of organizations of disability activists, also known as disability advocates, around the world working together with similar goals and demands, such as: accessibility and safety in architecture, transportation, and the physical environment; equal opportunities in independent living, employment equity, education, and housing; and freedom from discrimination, abuse, neglect, and from other rights violations.
Disability activists are working to break institutional, physical, and
societal barriers that prevent people with disabilities from living
their lives like other citizens.
Disability rights is complex because there are multiple ways in
which a person with a disability can have their rights violated in
different socio-political, cultural, and legal contexts. For example, in
modern times, a common barrier that individuals with disabilities face
deals with employment. Specifically, employers’ are often unwilling or
unable to provide the necessary accommodations to enable individuals'
with disabilities to effectively carryout their job functions.
When having a discussion about the needs of persons with
disabilities, disability activists note that solutions include persons
with disabilities as active participants, at least to some extent.
Current systems exist that involve third party involvement, such as
mental rehabilitation and legal advocacy, but few of these methods
include empowering this group to be self-sufficient.
History
United States
American disability rights has evolved significantly over the past century. Before the disability rights movement, President Franklin Delano Roosevelt's
refusal to be publicized in a position of vulnerability demonstrated
and symbolized the existing stigma surrounding disabilities.
While campaigning, giving speeches, or acting as a public figure, he
hid his disability, which perpetuated the ideology that "disability
equates to weakness".
At this point, disability in the United States was a personal
issue, and not many political or governmental organizations existed to
support individuals in these groups. In the 1950s, there was a
transition to volunteerism and parent-oriented organizations, such as
the March of Dimes.
While this was the beginning of activism and seeking support for these
groups, children with disabilities were largely hidden by their parents
out of fear of forced rehabilitation. When the civil rights movement took off in the 1960s, disability advocates joined it and the women’s rights movements
in order to promote equal treatment and challenge stereotypes. It was
at this time that disability rights advocacy began to have a
cross-disability focus. People with different kinds of disabilities
(physical and mental disabilities, along with visual and hearing
disabilities) and different essential needs came together to fight for a
common cause.
It was not until 1990 that the Americans with Disabilities Act
(ADA) was passed, legally prohibiting discrimination on account of
disability, and mandating disability access in all buildings and public
areas. The ADA is historically significant in that it defined the
meaning of reasonable accommodation in order to protect employees and
employers.
Today, disability rights advocates continue protecting those who are
discriminated against, and also work towards more niche issues like law
enforcement and treatment of people with disabilities. On a global
scale, the United Nations has established the Convention on Rights of
Persons with Disabilities, specifically discussing indigenous people with disabilities (Lockwood 146).
The social model of disability
suggests disability is caused by the way society is organized, rather
than by a person’s impairment. This model suggests barriers in society
are created by ableism. When barriers are removed, people with disabilities can be independent and equal in society.
There are three main types of barriers:
Attitudinal barriers: are created by people who see only
disability when associating with people with disabilities in some way.
These attitudinal barriers can be witnessed through bullying,
discrimination, and fear. These barriers include low expectations of
people with disabilities. These barriers contribute to all other
barriers. Attitudes towards people with disabilities in low and middle-income countries can be even more extreme.
Environmental barriers: inaccessible environments, natural or built, create disability by creating barriers to inclusion.
Institutional barriers: include many laws, policies,
practices, or strategies that discriminate against people with
disabilities. For example, a study of five Southeast Asian countries
found that electoral laws do not specially protect the political rights
of persons with disabilities, while "some banks do not allow visually
disabled people to open accounts, and HIV testing centers often refuse
to accept sign language interpreters due to confidentiality policies". Restrictive laws exist in some countries, particularly affecting people with intellectual or psychosocial disabilities.
Other barriers include: internalised barriers (low expectations of
people with disabilities can undermine their confidence and
aspirations), inadequate data and statistics, lack of participation and
consultation of disabled people.
Issues
People with physical disabilities
Access
to public areas such as city streets, public buildings, and restrooms
are some of the more visible changes brought about in recent decades to
remove physical barriers. A noticeable change in some parts of the world
is the installation of elevators, automatic doors, wide doors and corridors, transit lifts, wheelchair ramps, curb cuts, and the elimination of unnecessary steps where ramps and elevators are not available, allowing people in wheelchairs and with other mobility disabilities to use public sidewalks and public transit more easily and safely.
People with visual disabilities
Code Signs for People with CVD
People with color vision deficiency
regularly deal with implicit discrimination due to their inability to
distinguish certain colors. A system of geometrically shaped code signs
known as Coloradd was developed by Professor Miguel Neiva of the University of Minho, Portugal, in 2010 to indicate colours to people who have difficulty discerning them.
People with developmental disabilities
Advocates for the rights of people with developmental disabilities focus their efforts on gaining acceptance in the workforce
and in everyday activities and events from which they might have been
excluded in the past. Unlike many of the leaders in the physical
disability rights community, self-advocacy
has been slow in developing for people with developmental disabilities.
As a result, much of the work done by the Disability Rights Movement
was completed by allies, or those without disabilities but with a strong
connection to someone with disabilities. Parents, friends, and siblings
fought for education and acceptance when their loved ones with
cognitive disabilities could not.
Public awareness of the civil rights movement for this population
remains limited, and the stereotyping of people with developmental
disabilities as non-contributing citizens who are dependent on others
remains common. Today, the movement has a more social focus to increase
this public awareness, as evidenced by the "R-Word" Campaign, in which
they try to eliminate the colloquial use of the word "retard".
Autism rights movement
The autism rights movement is a social movement 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 autism rights movement advocates for several 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 primarily genetic and should be accepted as a natural
expression of the human genome.
This perspective is distinct from two other views: the medical
perspective, that autism is caused by a genetic defect and should be
addressed by targeting the autism gene(s), and fringe theories that autism is caused by environmental factors such as vaccines.
The movement is controversial. A common criticism 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.
The right to have an independent life, using paid assistant care instead of being institutionalized,
if the individual wishes, is a major goal of the disability rights
movement, and is the main goal of the similar independent living and self-advocacy movements, which are most strongly associated with people with intellectual disabilities and mental health disorders. These movements have supported people with disabilities to live as more active participants in society.
Access to education and employment
Access to education and employment have also been a major focus of the disability rights movement. Adaptive technologies, enabling people to work jobs they could not have previously, help create access to jobs and economic independence. Access in the classroom has helped improve education opportunities and independence for people with disabilities.
Freedom from discrimination and abuse
Freedom
from abuse, neglect, and violations of a person's rights are also
important goals of the disability rights movement. Abuse and neglect
includes inappropriate seclusion and restraint, inappropriate use of
force by staff and/or providers, threats, harassment and/or retaliation
by staff or providers, failure to provide adequate nutrition, clothing,
and/or medical and mental health care, and/or failure to provide a clean
and safe living environment, as well as other issues which pose a
serious threat to the physical and psychological well-being of a person
with a disability. Violations of patients' rights include failure to
obtain informed consent for treatment, failure to maintain the
confidentiality of treatment records, and inappropriate restriction of
the right to communicate and associate with others, as well as other
restrictions of rights.
As a result of the work done through the disability rights
movement, significant disability rights legislation was passed in the
1970s through the 1990s in the U.S.
In 2019, the Accessible Canada Act
became law. This is the first national Canadian legislation on
accessibility that affects all government departments and federally
regulated agencies.
Following the introduction of the Bedroom Tax (officially the Under-occupancy penalty) in the Welfare Reform Act 2012, disability activists have played a significant role in the development of Bedroom Tax protests.
A wide range of benefit changes are estimated to affect disabled people
disproportionately and to compromise disabled people's right to
independent living.
United States
In 1948, a watershed for the movement was the proof of the existence
of physical and program barriers. The proof was provided as a
specification for barrier free usable facilities for people with
disabilities. The specifications provided the minimum requirements for
barrier free physical and program access. An example of barriers are;
providing only steps to enter buildings; lack of maintenance of
walkways; locations not connected with public transit; lack of visual
and hearing communications ends up segregating individuals with
disabilities from independent, participation, and opportunities. The
ANSI - Barrier Free Standard (phrase coined by Dr. Timothy Nugent,
the lead investigator) called "ANSI A117.1, Making Buildings Accessible
to and Usable by the Physically Handicapped", provides the indisputable
proof that the barriers exist. The standard is the outcome of physical
therapists, bio-mechanical engineers, and individuals with disabilities
who developed and participated in over 40 years of research. The
standard provides the criteria for modifying programs and the physical
site to provide independence. The standard has been emulated globally
since its introduction in Europe, Asia, Japan, Australia, and Canada, in
the early 1960s.
One of the most important developments of the disability rights movement was the growth of the independent living movement, which emerged in California in the 1960s through the efforts of Edward Roberts
and other wheelchair-using individuals. This movement, a subset of the
disability rights movement, postulates that people with disabilities are
the best experts on their needs, and therefore they must take the
initiative, individually and collectively, in designing and promoting
better solutions and must organize themselves for political power.
Besides de-professionalization and self-representation, the independent
living movement's ideology comprises de-medicalization of disability,
de-institutionalization and cross-disability (i.e. inclusion in the
independent living movement regardless of diagnoses). Similarly, the Architectural Barriers Act
was passed in 1968, mandating that federally constructed buildings and
facilities be accessible to people with physical disabilities. This act
is generally considered to be the first ever-federal disability rights
legislation.
Unfortunately for those with cognitive disabilities, their disability
made it more difficult to be the best expert of their own needs,
hindering their ability to self-advocate as their wheelchair-using
counterparts could. Self-representation was much more difficult for
those who could not articulate their thoughts, leading to their
dependence on others to carry on the movement.
In 1973 the (American) Rehabilitation Act
became law; Sections 501, 503, and 504 prohibited discrimination in
federal programs and services and all other programs or services
receiving federal funds. Key language in the Rehabilitation Act, found
in Section 504, states "No otherwise qualified handicapped [sic] individual in the United States, shall, solely by reason of his [sic] handicap [sic],
be excluded from the participation in, be denied the benefits of, or be
subjected to discrimination under any program or activity receiving
federal financial assistance." This was the first civil rights law guaranteeing equal opportunity for people with disabilities.
Another crucial turning point was the 504 Sit-in in 1977 of government buildings operated by the United States Department of Health, Education, and Welfare (HEW), conceived by Frank Bowe and organized by the American Coalition of Citizens with Disabilities,
that led to the release of regulations pursuant to Section 504 of the
Rehabilitation Act of 1973. On April 5, 1977, activists began to
demonstrate and some sat-in in the offices found in ten of the federal
regions including New York City, Los Angeles, Boston, Denver, Chicago,
Philadelphia, and Atlanta. One of the most noteworthy protests occurred
in San Francisco. The protesters demanded the signing of regulations for
Section 504 of the Rehabilitation Act of 1973.The successful sit-in was
led by Judith Heumann.
The first day of protests marked the first of a 25-day sit-in. Close to
120 disability activists and protesters occupied the HEW building, and
Secretary Joseph Califano
finally signed on April 28, 1977. This protest was significant not only
because its goal was achieved, but also because it was the foremost
concerted effort between people of different disabilities coming
together in support of legislation that affected the overall disability
population, rather than only specific groups.
In 1978 disability rights activists in Denver, Colorado, organized by the Atlantis Community,
held a sit-in and blockade of the Denver Regional Transit Authority
buses in 1978. They were protesting the fact that city’s transit system
was completely inaccessible for the physically disabled. This action
proved to be just the first in a series of civil disobedience
demonstrations that lasted for a year until the Denver Transit Authority
finally bought buses equipped with wheelchair lifts. In 1983, Americans Disabled for Accessible Public Transit (ADAPT)
was responsible for another civil disobedience campaign also in Denver
that lasted seven years. They targeted the American Public Transport
Association in protest of inaccessible public transportation; this
campaign ended in 1990 when bus lifts for people using wheelchairs were
required nationwide by the Americans with Disabilities Act.
Another significant protest related to disability rights was the Deaf President Now protest by the Gallaudet University
students in Washington, D.C., in March 1988. The 8-day (March 6 – March
13) demonstration and occupation and lock-out of the school began when
the Board of Trustees appointed a new hearing President, Elisabeth
Zinser, over two Deaf candidates. The students’ primary grievance was
that the university, which was dedicated to the education of people who
are Deaf, had never had a Deaf president, someone representative of
them. Of the protesters’ four demands, the main one was the resignation
of the current president and the appointment of a Deaf one. The
demonstration consisted of about 2,000 student and nonstudent
participants. The protests took place on campus, in government
buildings, and in the streets. In the end, all the students’ demands
were met and I. King Jordan was appointed the first Deaf President of the university.
In 1990, the Americans with Disabilities Act
became law, and it provided comprehensive civil rights protection for
people with disabilities. Closely modeled after the Civil Rights Act and
Section 504, the law was the most sweeping disability rights
legislation in American history. It mandated that local, state, and
federal governments and programs be accessible, that employers with more
than 15 employees make "reasonable accommodations"
for workers with disabilities and not discriminate against otherwise
qualified workers with disabilities, and that public accommodations such
as restaurants and stores not discriminate against people with
disabilities and that they make reasonable modifications to ensure
access for disabled members of the public. The act also mandated access
in public transportation, communication, and in other areas of public
life.
The first Disability Pride March
in the United States was held in Boston in 1990. A second Disability
Pride March was held in Boston in 1991. There were no subsequent
Disability Pride Marches/Parades for many years, until Chicago on
Sunday, July 18, 2004.
It was funded with $10,000 in seed money that Sarah Triano received in
2003 as part of the Paul G. Hearne Leadership award from the American Association of People with Disabilities. According to Triano, 1,500 people attended the parade. Yoshiko Dart was the parade marshal.
Exhibitions and collections
To mark the 10th anniversary of the Americans with Disabilities Act, the Smithsonian InstitutionNational Museum of American History
opened an exhibition that examined the history of activism by people
with disabilities, their friends, and families to secure the civil
rights guaranteed to all Americans. Objects on view included the pen
President George H.W. Bush used to sign the Act and one of the first ultralight wheelchairs.
The exhibition was designed for maximum accessibility. Web-based kiosks
- prototypes for a version that will eventually be available to museums
and other cultural institutions - provided alternate formats to
experience the exhibition. The exhibition was open from July 6, 2000, to
July 23, 2001.
Debates and approaches
A key debate in the disability rights movement is between affirmative action
for persons with disabilities versus fighting for equitable treatment.
According to a 1992 polling organization, many fear that integrating
people with disabilities into the workplace may affect their company
image, or it may result in decreased productivity. This coincides with the 1992 parliamentary review of the Employment Equity Act, which stated that employers should look to implement equity without having an official quota system. This remains an ongoing debate.
An additional debate is between institutionalizing persons with
disabilities versus supporting them in their homes. In 1963 during John
F. Kennedy’s presidency, he transformed the national view of mental
health by boosting funding for community-based programs
and drafting legislation for mental health care. He also created the
President's Panel on Mental Retardation, which created recommendations
for new programs that governments can implement on a state level,
therefore moving away from "custodial institutions".
This shift away from institutionalization has generated a long-lasting
stigma against mental health institutions, which is why in politics
there is often not enough funding for this concept.
According to the US Supreme Court case Humphrey v. Cady,
civil commitment laws and eligibility for intervention exist only in the
instance when the person is ruled an immediate danger to themself or
others.
The difficulty of proving "immediate danger" has led to the unexpected
outcome that it is harder to commit mentally ill patients to hospital
and easier to send them to prison. According to the National Alliance on
Mental Illness, about 15% male inmates and 30% female inmates have some
kind of serious mental illness, which remains untreated.
Another ongoing debate is how to cultivate self-determination for persons with disabilities. Article 1 of the United Nations Charter asserts that "All peoples have the right to self-determination" with free will.
Because this highlights the concept of free and autonomous choice, one
argument is that any government interference deters self-determination, thus leaving it to persons with disabilities to seek out any help they need from charities and nonprofit organizations. Charitable organizations
such as churches believe in helping persons with disabilities with
nothing in return. On the other hand, another approach is a
participatory, symbiotic relationship, which include methods like
professional development and resource provisions. More specifically, one
approach is to allow persons with disabilities to self-articulate their
needs and generate their own solutions and analyses.
Instead of passive participation, which is participation by being told
what to do or what has been done, this approach proposes to allow this
group to be self-sufficient and make their own decisions. Barriers to
this include defining who is a self-sufficient individual with a
disability, circling back to the concept of self-determination.
The autism spectrum encompasses a range of neurodevelopmental conditions, including autism and Asperger syndrome, generally known as autism spectrum disorders (ASD). Individuals on the autism spectrum typically experience difficulties with social communication
and interaction and may also exhibit restricted, repetitive patterns of
behavior, interests, or activities. Symptoms are typically recognized
between one and two years of age in boys.
However, many children are not diagnosed until they are older. It is
also common for diagnosis to be received as an adolescent or as an
adult. The term "spectrum" refers to the variation in the type and severity of symptoms.
Those in the mild range are typically able to function independently,
with some difficulties, while those with moderate to severe symptoms may
require more substantial support in their daily lives.
Long-term problems may include difficulties in daily living such as
managing schedules, hypersensitivities, creating and keeping
relationships, and maintaining jobs.
The cause of autism spectrum conditions is uncertain. Risk factors include having an older parent, a family history of autism, and certain genetic conditions. It is estimated that between 64% and 91% of risk is due to family history. Diagnosis is based on symptoms. In 2013, the Diagnostic and Statistical Manual of Mental Disorders version 5 (DSM-5) replaced the previous subgroups of autistic disorder, Asperger syndrome, pervasive developmental disorder not otherwise specified (PDD-NOS), and childhood disintegrative disorder with the single term "autism spectrum disorder".
Support efforts are individualized and typically include learning social, behavioral, and/or other coping skills. Evidence to support the use of medication is not strong.
Medication may be used to treat conditions such as depression or
anxiety that can be triggered by the stress of feeling and being treated
as different, but there is no “cure” for autism as the brain structures
involved develop in utero and cannot be changed.
An estimated 1% of the population (62.2 million globally) are on the autism spectrum as of 2015. In the United States it is estimated to affect more than 2% of children (about 1.5 million) as of 2016. Males are diagnosed four times more often than females. The autism rights movement promotes the concept of neurodiversity, which views autism as a natural variation of the brain rather than a disorder to be cured.
Classification
DSM-IV diagnoses that fall under the umbrella of autism spectrum disorder in DSM-V
DSM IV (2000)
Autism forms the core of the autism spectrum disorders. Asperger syndrome is closest to autism in signs and likely causes; unlike autism, people with Asperger syndrome have no significant delay in language development or cognitive development, according to the older DSM-IV criteria. PDD-NOS is diagnosed when the criteria are not met for a more specific disorder. Some sources also include Rett syndrome and childhood disintegrative disorder,
which share several signs with autism but may have unrelated causes;
other sources differentiate them from ASD, but group all of the above
conditions into the pervasive developmental disorders.
Autism, Asperger syndrome, and PDD-NOS are sometimes called the autistic disorders instead of ASD, whereas autism itself is often called autistic disorder, childhood autism, or infantile autism. Although the older term pervasive developmental disorder and the newer term autism spectrum disorder largely or entirely overlap, the earlier was intended to describe a specific set of diagnostic labels, whereas the latter refers to a postulated spectrum disorder linking various conditions. ASD is a subset of the broader autism phenotype (BAP), which describes individuals who may not have ASD but do have autistic-like traits, such as avoiding eye contact.
DSM V (2013)
A revision to autism spectrum disorder (ASD) was presented in the Diagnostic and Statistical Manual of Mental Disorders version 5 (DSM-5), released in May 2013. The new diagnosis encompasses previous diagnoses of autistic disorder, Asperger syndrome, childhood disintegrative disorder, and PDD-NOS.
Slightly different diagnostic definitions are used in other countries.
Rather than categorizing these diagnoses, the DSM-5 has adopted a
dimensional approach to diagnosing disorders that fall underneath the
autism spectrum umbrella. Some have proposed that individuals on the
autism spectrum may be better represented as a single diagnostic
category. Within this category, the DSM-5 has proposed a framework of
differentiating each individual by dimensions of severity, as well as
associated features (i.e., known genetic disorders, and intellectual
disability).
Another change to the DSM includes collapsing social and communication deficits into one domain.
Thus, an individual with an ASD diagnosis will be described in terms of
severity of social communication symptoms, severity of fixated or
restricted behaviors or interests, and hyper- or hyposensitivity to sensory stimuli.
The restricting of onset age has also been loosened from 3 years
of age to "early developmental period", with a note that symptoms may
manifest later when social demands exceed capabilities.
Signs and symptoms
Autism
spectrum disorder (ASD) is characterized by persistent challenges with
social communication and social interaction, and by the presence of
restricted, repetitive patterns of behavior, interests, or activities. These symptoms begin in early childhood, and can impact function. There is also a unique disorder called savant syndrome that can co-occur with autism. As many as one in 10 children with autism and savant syndrome can have outstanding skills in music, art, and mathematics. Self-injurious behavior (SIB) is more common and has been found to correlate with intellectual disability. Approximately 50% of people with ASD take part in some type of SIB (head-banging, self-biting).
Other characteristics of ASD include restricted and repetitive
behaviors (RRBs). These include a range of gestures and behaviors as
defined in the Diagnostic and Statistic Manual for Mental Disorders.
Asperger syndrome was distinguished from autism in the DSM-IV by the lack of delay or deviance in early language development. Additionally, individuals diagnosed with Asperger syndrome did not have significant cognitive delays. PDD-NOS
was considered "subthreshold autism" and "atypical autism" because it
was often characterized by milder symptoms of autism or symptoms in only
one domain (such as social difficulties).
The DSM-5 eliminated four separate diagnoses—Asperger syndrome;
pervasive developmental disorder, not otherwise specified (PDD-NOS);
childhood disintegrative disorder; and autistic disorder—and combined
them under the diagnosis of autism spectrum disorder.
Developmental course
Most parents report that the onset of autism symptoms occur within the first year of life.
There are two possible developmental courses of autism spectrum
disorder. One course of development is more gradual in nature, in which
parents report concerns in development over the first two years of life
and diagnosis is made around 3–4 years of age. Some of the early signs
of ASDs in this course include decreased looking at faces, failure to
turn when name is called, failure to show interests by showing or
pointing, and delayed imaginative play.
A second course of development is characterized by normal or
near-normal development in the first 15 months to 3 years before onset
of regression or loss of skills. Regression may occur in a variety of
domains, including communication, social, cognitive, and self-help
skills; however, the most common regression is loss of language.
Childhood disintegrative disorder, a DSM-IV diagnosis now included
under ASD in DSM-V, is characterized by regression after normal
development in the first 3 to 4 years of life.
There continues to be a debate over the differential outcomes
based on these two developmental courses. Some studies suggest that
regression is associated with poorer outcomes and others report no
differences between those with early gradual onset and those who
experience a regression period.
While there is conflicting evidence surrounding language outcomes in
ASD, some studies have shown that cognitive and language abilities at
age 2+1⁄2 may help predict language proficiency and production after age 5. Overall, the literature stresses the importance of early intervention in achieving positive longitudinal outcomes.
Social and communication skills
Impairments
in social skills present many challenges for individuals with ASD.
Deficits in social skills may lead to problems with friendships,
romantic relationships, daily living, and vocational success.
One study that examined the outcomes of adults with ASD found that,
compared to the general population, those with ASD were less likely to
be married, but it is unclear whether this outcome was due to deficits
in social skills or intellectual impairment, or some other reason.
Prior to 2013, deficits in social function and communication were considered two separate symptoms of autism.
The current criteria for autism diagnosis require individuals to have
deficits in three social skills: social-emotional reciprocity, nonverbal
communication, and developing and sustaining relationships.
Social skills
Some of the symptoms related to social reciprocity include:
Lack of mutual sharing of interests: many children with autism prefer not to play or interact with others.
Lack of awareness or understanding of other people's thoughts or
feelings: a child may get too close to peers without noticing that this
makes them uncomfortable.
Atypical behaviors for attention: a child may push a peer to gain attention before starting a conversation.
Symptoms related to relationships includes the following:
Defects in developing, maintaining, and understanding relationships.
Difficulties adjusting behavior to fit social contents:
People with autism spectrum usually display atypical nonverbal behaviors or have difficulties with nonverbal communication:
Poor eye contact: a child with autism may fail to make eye
contact when called by name, or they may avoid making eye contact with
an observer. Aversion of gaze can also be seen in anxiety disorders, however poor eye contact in autistic children is not due to shyness or anxiety; rather, it is overall diminished in quantity.
Facial expressions: impaired use of proper facial expressions are
common, they often do not know how to recognize emotions from others'
facial expressions, or they may not respond with the appropriate facial
expressions. They may have trouble recognizing subtle expressions of
emotion and identifying what various emotions mean for the conversation.
Body language: they may not pick up on body language or social cues
such as eye contact and facial expressions if they provide more
information than the person can process at that time. They struggle with
understanding the context and subtext of conversational or printed
situations, and have trouble forming resulting conclusions about the
content. This also results in a lack of social awareness and atypical
language expression.
How emotional processing and facial expressions differ between those
on the autism spectrum, and others is not clear, but emotions are
processed differently between different partners.
People with autism may experience difficulties with verbal communication:
Unusual speech: at least half of children with autism speak in a
flat, monotone voice or they may not recognize the need to control the
volume of their voice in different social settings. For example, they
may speak loudly in libraries or movie theaters.
Some of the linguistic behaviors in individuals with autism include
repetitive or rigid language, and restricted interests in conversation.
For example, a child might repeat words or insist on always talking
about the same subject.
Poor pragmatic communication: ASD can present with impairments in
pragmatic communication skills, such as difficulty initiating a
conversation or failure to consider the interests of the listener to
sustain a conversation.
Language impairment: language impairment is also common in children with autism, but it is not necessary for the diagnosis.
Many children with ASD develop language skills at an uneven pace where
they easily acquire some aspects of communication, while never fully
developing others. In some cases, individuals remain completely nonverbal
throughout their lives. The CDC estimated that around 40% of children
with autism don’t speak at all, although the accompanying levels of
literacy and nonverbal communication skills vary.
Monotropism: The ability to be focused in on one topic in communication is known as monotropism,
and can be compared to "tunnel vision" in the mind for those
individuals with ASD. It is also common for individuals with ASD to
communicate strong interest in a specific topic, speaking in lesson-like
monologues about their passion instead of enabling reciprocal
communication with whomever they are speaking to.
What looks like self-involvement or indifference toward others stems
from a struggle to recognize or remember that other people have their
own personalities, perspectives, and interests.
Language expression: language expression for those on the autism
spectrum is often characterized by repetitive and rigid language. Often
children with ASD repeat certain words, numbers, or phrases during an
interaction, words unrelated to the topic of conversation.
Echolalia: is also present in individuals with autism in which they respond to a question by repeating the inquiry instead of answering.
Behavioral characteristics
Autism
spectrum disorders include a wide variety of characteristics. Some of
these include behavioral characteristics which widely range from slow
development of social and learning skills to difficulties creating
connections with other people. They may develop these difficulties of
creating connections due to anxiety or depression, which people with
autism are more likely to experience, and as a result isolate
themselves.
Other behavioral characteristics include abnormal responses to
sensations including sights, sounds, touch, and smell, and problems
keeping a consistent speech rhythm. The latter problem influences an
individual's social skills, leading to potential problems in how they
are understood by communication partners. Behavioral characteristics
displayed by those with autism spectrum disorder typically influence
development, language, and social competence. Behavioral characteristics
of those with autism spectrum disorder can be observed as perceptual
disturbances, disturbances of development rate, relating, speech and
language, and motility.
The second core symptom of autism spectrum is a pattern of
restricted and repetitive behaviors, activities, and interests. In order
to be diagnosed with ASD, a child must have at least two of the
following behaviors:
Repetitivebehaviors – Repetitive behaviors such as rocking, hand flapping, finger flicking, head banging, or repeating phrases or sounds. These behaviors may occur constantly or only when the child gets stressed, anxious or upset.
Resistance to change – A strict adherence to routines such as eating certain foods in a specific order, or taking the same path to school every day. The child may have a meltdown if there is any change or disruption to their routine.
Specialized interests – An excessive in a particular thing or
topic, and devote all their attention to it. For example, young
children might completely focus on things that spin and ignore
everything else. Older children might try to learn everything about a
single topic, such as the weather or sports, and talk about it
constantly.
Sensory reactivity– An unusual reaction to certain sensory
inputs such as having a negative reaction to specific sounds or
textures, being fascinated by lights or movements or having an apparent
indifference to pain or heat.
Self-injury
Self-injurious behaviors (SIB) are common in ASD and include head-banging, self-cutting, self-biting, and hair-pulling. These behaviors can result in serious injury or death. Following are theories about the cause of self-injurious behavior in autistic individuals:
Frequency and/or continuation of self-injurious behavior can be
influenced by environmental factors (e.g. reward in return for halting
self-injurious behavior). However this theory is not applicable to
younger children with autism. There is some evidence that frequency of
self-injurious behavior can be reduced by removing or modifying
environmental factors that reinforce this behavior.
Higher rates of self-injury are also noted in socially isolated individuals with autism.
Self-injury could be a response to modulate pain perception when chronic pain or other health problems that cause pain are present.
An abnormal basal ganglia connectivity may predispose to self-injurious behavior.
Causes
While specific causes of autism spectrum disorders have yet to be
found, many risk factors identified in the research literature may
contribute to their development. These risk factors include genetics,
prenatal and perinatal factors, neuroanatomical
abnormalities, and environmental factors. It is possible to identify
general risk factors, but much more difficult to pinpoint specific
factors. Given the current state of knowledge, prediction can only be of
a global nature and therefore requires the use of general markers.
Genetics
Hundreds of different genes are implicated in susceptibility to developing autism, most of which alter the brain structure in a similar way
As of 2018, it appeared that somewhere between 74% and 93% of ASD risk is heritable. After an older child is diagnosed with ASD, 7–20% of subsequent children are likely to be as well.
If parents have a child with ASD they have a 2% to 8% chance of having a
second child with ASD. If the child with ASD is an identical twin the
other will be affected 36 to 95 percent of the time. If they are
fraternal twins the other will only be affected up to 31 percent of the
time.
As of 2018, understanding of genetic risk factors had shifted from a focus on a few alleles
to an understanding that genetic involvement in ASD is probably
diffuse, depending on a large number of variants, some of which are
common and have a small effect, and some of which are rare and have a
large effect. The most common gene disrupted with large effect rare
variants appeared to be CHD8, but less than 0.5% of people with ASD have such a mutation. Some ASD is associated with clearly genetic conditions, like fragile X syndrome; however only around 2% of people with ASD have fragile X. Hypotheses from evolutionary psychiatry suggest that these genes persist because they are linked to human inventiveness, intelligence or systemising.
Current research suggests that genes that increase susceptibility to ASD are ones that control protein synthesis in neuronal cells in response to cell needs, activity and adhesion of neuronal cells, synapse formation and remodeling, and excitatory to inhibitory neurotransmitter
balance. Therefore despite up to 1000 different genes thought to
contribute to increased risk of ASD, all of them eventually affect
normal neural development and connectivity between different functional
areas of the brain in a similar manner that is characteristic of an ASD
brain. Some of these genes are known to modulate production of the GABA
neurotransmitter which is the main inhibitory neurotransmitter in the
nervous system. These GABA-related genes are underexpressed in an ASD
brain. On the other hand, genes controlling expression of glial and immune cells in the brain e.g. astrocytes and microglia,
respectively, are overexpressed which correlates with increased number
of glial and immune cells found in postmortem ASD brains. Some genes
under investigation in ASD pathophysiology are those that affect the mTOR signaling pathway which supports cell growth and survival.
All these genetic variants contribute to the development of the
autistic spectrum, however, it can not be guaranteed that they are
determinants for the development.
Early life
Several
prenatal and perinatal complications have been reported as possible
risk factors for autism. These risk factors include maternal gestational diabetes, maternal and paternal age over 30, bleeding after first trimester, use of prescription medication (e.g. valproate) during pregnancy, and meconium in the amniotic fluid.
While research is not conclusive on the relation of these factors to
autism, each of these factors has been identified more frequently in
children with autism, compared to their siblings who do not have autism,
and other typically developing youth. While it is unclear if any single factors during the prenatal phase affect the risk of autism, complications during pregnancy may be a risk.
Low vitamin D levels in early development has been hypothesized as a risk factor for autism.
Disproven vaccine hypothesis
In 1998 Andrew Wakefield led a fraudulent study that suggested that the MMR vaccine may cause autism. This conjecture suggested that autism results from brain damage caused either by the MMR vaccine itself, or by thimerosal, a vaccine preservative.
No convincing scientific evidence supports these claims, and further
evidence continues to refute them, including the observation that the
rate of autism continues to climb despite elimination of thimerosal from
routine childhood vaccines.
A 2014 meta-analysis examined ten major studies on autism and vaccines
involving 1.25 million children worldwide; it concluded that neither the
MMR vaccine, which has never contained thimerosal, nor the vaccine components thimerosal or mercury, lead to the development of ASDs.
Pathophysiology
In general, neuroanatomical studies support the concept that autism
may involve a combination of brain enlargement in some areas and
reduction in others.
These studies suggest that autism may be caused by abnormal neuronal
growth and pruning during the early stages of prenatal and postnatal
brain development, leaving some areas of the brain with too many neurons
and other areas with too few neurons.
Some research has reported an overall brain enlargement in autism,
while others suggest abnormalities in several areas of the brain,
including the frontal lobe, the mirror neuron system, the limbic system, the temporal lobe, and the corpus callosum.
In functional neuroimaging studies, when performing theory of mind and facial emotion response tasks, the median person on the autism spectrum exhibits less activation in the primary and secondary somatosensory cortices of the brain than the median member of a properly sampled control population. This finding coincides with reports demonstrating abnormal patterns of cortical thickness and grey matter volume in those regions of autistic persons' brains.
Brain connectivity
Brains
of autistic individuals have been observed to have abnormal
connectivity and the degree of these abnormalities directly correlates
with the severity of autism. Following are some observed abnormal
connectivity patterns in autistic individuals:
Decreased connectivity between different specialized regions of the brain (e.g. lower neuron density in corpus callosum) and relative overconnectivity within
specialized regions of the brain by adulthood. Connectivity between
different regions of the brain ('long-range' connectivity) is important
for integration and global processing of information and comparing
incoming sensory information with the existing model of the world within
the brain. Connections within each specialized regions ('short-range'
connections) are important for processing individual details and
modifying the existing model of the world within the brain to more
closely reflect incoming sensory information. In infancy, children at
high risk for autism that were later diagnosed with autism were observed
to have abnormally high long-range connectivity which then decreased
through childhood to eventual long-range underconnectivity by adulthood.
Abnormal preferential processing of information by the left
hemisphere of the brain vs. preferential processing of information by
right hemisphere in neurotypical individuals. The left hemisphere is
associated with processing information related to details whereas the
right hemisphere is associated with processing information in a more
global and integrated sense that is essential for pattern recognition.
For example, visual information like face recognition is normally
processed by the right hemisphere which tends to integrate all
information from an incoming sensory signal, whereas an ASD brain
preferentially processes visual information in the left hemisphere where
information tends to be processed for local details of the face rather
than the overall configuration of the face. This left lateralization negatively impacts both facial recognition and spatial skills.
Increased functional connectivity within the left hemisphere which
directly correlates with severity of autism. This observation also
supports preferential processing of details of individual components of
sensory information over global processing of sensory information in an
ASD brain.
Prominent abnormal connectivity in the frontal and occipital
regions. In autistic individuals low connectivity in the frontal cortex
was observed from infancy through adulthood. This is in contrast to
long-range connectivity which is high in infancy and low in adulthood in
ASD. Abnormal neural organization is also observed in the Broca's area which is important for speech production.
Neuropathology
Listed
below are some characteristic findings in ASD brains on molecular and
cellular levels regardless of the specific genetic variation or mutation
contributing to autism in a particular individual:
Limbic system
with smaller neurons that are more densely packed together. Given that
the limbic system is the main center of emotions and memory in the human
brain, this observation may explain social impairment in ASD.
Fewer and smaller Purkinje neurons in the cerebellum. New research suggest a role of the cerebellum in emotional processing and language.
Increased number of astrocytes and microglia
in the cerebral cortex. These cells provide metabolic and functional
support to neurons and act as immune cells in the nervous system,
respectively.
Increased brain size in early childhood causing macrocephaly
in 15–20% of ASD individuals. The brain size however normalizes by
mid-childhood. This variation in brain size in not uniform in the ASD
brain with some parts like the frontal and temporal lobes being larger,
some like the parietal and occipital lobes being normal sized, and some
like cerebellar vermis, corpus callosum, and basal ganglia being smaller than neurotypical individuals.
Cell-adhesion molecules (CAMs) that are essential to formation and maintenance of connections between neurons, neuroligins found on postsynaptic neurons that bind presynaptic CAMs, and proteins that anchor CAMs to neurons are all found to be mutated in ASD.
Gut-immune-brain axis
Role of gut-immune-brain axis in autism; BBB – blood brain barrier
Up to 70% of autistic individuals have GI related problems like reflux, diarrhea, constipation, inflammatory bowel disease,
and food allergies. The severity of GI symptoms is directly
proportional to the severity of autism. It has also been shown that the
makeup of gut bacteria in ASD patients is different than that of
neurotypical individuals. This has raised the question of influence of
gut bacteria on ASD development via inducing an inflammatory state.
Listed below are some research findings on the influence of gut bacteria and abnormal immune responses on brain development:
Some studies on rodents have shown gut bacteria influencing
emotional functions and neurotransmitter balance in the brain, both of
which are impacted in ASD.
The immune system is thought to be the intermediary that modulates
the influence of gut bacteria on the brain. Some ASD individuals have a
dysfunctional immune system with higher numbers of some types of immune
cells, biochemical messengers and modulators, and autoimmune antibodies. Increased inflammatory biomarkers
correlate with increased severity of ASD symptoms and there is evidence
to support a state of chronic brain inflammation in ASD.
More pronounced inflammatory responses to bacteria were found in ASD individuals with an abnormal gut microbiota. Additionally IgA
antibodies that are central to gut immunity were also found in elevated
levels in ASD populations. Some of these antibodies may also attack proteins that support myelination of the brain, a process that is important for robust transmission of neural signal in many nerves.
Activation of the maternalimmune system during pregnancy (by gut bacteria, bacterial toxins, an infection, or non-infectious causes) and gut bacteria in the mother that induce increased levels of Th17, a proinflammatory immune cell, have been associated with an increased risk of autism. Some maternal IgG
antibodies that cross the placenta to provide passive immunity to the
fetus can also attack the fetal brain. One study found that 12% of
mothers of autistic children have IgG that are active against the fetal
brain.
Inflammation within the gut itself does not directly affect brain
development. Rather it is the inflammation within the brain promoted by
inflammatory responses to harmful gut microbiome that impact brain development.
Proinflammatory biomessengers IFN-γ, IFN-α, TNF-α, IL-6 and IL-17 have been shown to promote autistic behaviors in animal models. Giving anti-IL-6 and anti-IL-17 along with IL-6 and IL-17, respectively, have been shown to negate this effect in the same animal models.
Some gut proteins and microbial products can cross the blood–brain barrier (BBB) and activate mast cells in the brain. Mast cells release proinflammatory factors and histamine which further increase BBB permeability and help set up a cycle of chronic inflammation.
Mirror neuron system
The mirror neuron system (MNS) consists of a network of brain areas that have been associated with empathy processes in humans. In humans, the MNS has been identified in the inferior frontal gyrus (IFG) and the inferior parietal lobule (IPL) and is thought to be activated during imitation or observation of behaviors.
The connection between mirror neuron dysfunction and autism is
tentative, and it remains to be seen how mirror neurons may be related
to many of the important characteristics of autism.
"Social brain" interconnectivity
A
number of discrete brain regions and networks among regions that are
involved in dealing with other people have been discussed together under
the rubric of the "social brain". As of 2012, there is a consensus that
autism spectrum is likely related to problems with interconnectivity
among these regions and networks, rather than problems with any specific
region or network.
Temporal lobe
Functions of the temporal lobe are related to many of the deficits observed in individuals with ASDs, such as receptive language, social cognition, joint attention, action observation, and empathy. The temporal lobe also contains the superior temporal sulcus (STS) and the fusiform face area
(FFA), which may mediate facial processing. It has been argued that
dysfunction in the STS underlies the social deficits that characterize
autism. Compared to typically developing individuals, one fMRI study
found that individuals with so-called 'high-functioning autism' had reduced activity in the FFA when viewing pictures of faces.
Mitochondria
ASD could be linked to mitochondrial disease (MD), a basic cellular abnormality with the potential to cause disturbances in a wide range of body systems. A 2012 meta-analysis
study, as well as other population studies have shown that
approximately 5% of children with ASD meet the criteria for classical
MD. It is unclear why the MD occurs considering that only 23% of children with both ASD and MD present with mitochondrial DNA (mtDNA) abnormalities.
Serotonin
Serotonin is a major neurotransmitter in the nervous system and contributes to formation of new neurons (neurogenesis), formation of new connections between neurons (synaptogenesis),
remodeling of synapses, and survival and migration of neurons,
processes that are necessary for a developing brain and some also
necessary for learning in the adult brain. 45% of ASD individuals have
been found to have increased blood serotonin levels. It has been hypothesized that increased activity of serotonin
in the developing brain may facilitate the onset of autism spectrum
disorder, with an association found in six out of eight studies between
the use of selective serotonin reuptake inhibitors
(SSRIs) by the pregnant mother and the development of ASD in the child
exposed to SSRI in the antenatal environment. The study could not
definitively conclude SSRIs caused the increased risk for ASDs due to
the biases found in those studies, and the authors called for more
definitive, better conducted studies. Confounding by indication has since then been shown to be likely.
However, it is also hypothesized that SSRIs may help reduce symptoms of
ASD and even positively affect brain development in some ASD patients.
Diagnosis
Process
for screening and diagnosing Autism Spectrum Disorder; ASD – Autism
Spectrum Disorder; M-CHAT – Modified Checklist for Autism in Toddlers;
(+) – positive test result; (-) – negative test result
ASD can be detected as early as 18 months or even younger in some cases.
A reliable diagnosis can usually be made by the age of two years,
however, because of delays in seeking and administering assessments,
diagnoses often occur much later. A study in 2005 found that children diagnosed with autistic disorder and PDD-NOS are typically diagnosed at age 3 while children with aspergers are typically diagnosed at age 7.
The diverse expressions of ASD behavioral and observational
symptoms and absence of one specific genetic or molecular marker for the
disorder pose diagnostic challenges to clinicians who use assessment
methods based on symptoms alone. Individuals with an ASD may present at
various times of development (e.g., toddler, child, or adolescent), and
symptom expression may vary over the course of development.
Furthermore, clinicians who use those methods must differentiate among
pervasive developmental disorders, and may also consider similar
conditions, including intellectual disability not associated with a pervasive developmental disorder, specific language disorders, ADHD, anxiety, and psychotic disorders.
Ideally the diagnosis of ASD should be given by a team of professionals
from different disciplines (e.g. child psychiatrists, child
neurologists, psychologists) and only after the child has been observed
in many different settings.
Considering the unique challenges in diagnosing ASD using
behavioral and observational assessment, specific practice parameters
for its assessment were published by the American Academy of Neurology in the year 2000, the American Academy of Child and Adolescent Psychiatry in 1999, and a consensus panel with representation from various professional societies in 1999.
The practice parameters outlined by these societies include an initial
screening of children by general practitioners (i.e., "Level 1
screening") and for children who fail the initial screening, a
comprehensive diagnostic assessment by experienced clinicians (i.e.
"Level 2 evaluation"). Furthermore, it has been suggested that
assessments of children with suspected ASD be evaluated within a
developmental framework, include multiple informants (e.g., parents and
teachers) from diverse contexts (e.g., home and school), and employ a
multidisciplinary team of professionals (e.g., clinical psychologists, neuropsychologists, and psychiatrists).
As of 2019, psychologists would wait until a child showed initial
evidence of ASD tendencies, then administer various psychological
assessment tools to assess for ASD.
Among these measurements, the Autism Diagnostic Interview-Revised
(ADI-R) and the Autism Diagnostic Observation Schedule (ADOS) are
considered the "gold standards" for assessing autistic children.
The ADI-R is a semi-structured parent interview that probes for
symptoms of autism by evaluating a child's current behavior and
developmental history. The ADOS is a semistructured interactive
evaluation of ASD symptoms that is used to measure social and
communication abilities by eliciting several opportunities (or
"presses") for spontaneous behaviors (e.g., eye contact) in standardized
context. Various other questionnaires (e.g., The Childhood Autism Rating Scale, Autism Treatment Evaluation Checklist)
and tests of cognitive functioning (e.g., The Peabody Picture
Vocabulary Test) are typically included in an ASD assessment battery.
Screening
Screening recommendations for autism in children younger than 3 years are:
US Preventive Services Task Force (USPSTF) does not recommend
universal screen of young children for autism due to poor evidence of
benefits of this screening when parents and clinicians have no concerns
about ASD. The major concern is a false-positive diagnosis that would
burden a family with very time consuming and financially demanding
treatment interventions when it is not truly required. USPSTF also did
not find any robust studies showing effectiveness of behavioral
therapies in reducing ASD symptom severity
American Academy of Pediatrics recommends ASD screening of all children between the ages if 18 and 24 months.
The AAP also recommends that children who screen positive for ASD be
referred to ASD treatment services without waiting for a comprehensive
diagnostic workup.
The American Academy of Family Physicians did not find sufficient evidence of benefit of universal early screening for ASD
The American Academy of Neurology and Child Neurology Society
recommends general routine screening for delayed or abnormal development
in children followed by screening for ASD only if indicated by the
general developmental screening
The American Academy of Child and Adolescent Psychiatry recommend routinely screening autism symptoms in young children
The UK National Screening Committee does not recommend universal ASD
screening in young children. Their main concerns includes higher
chances of misdiagnosis at younger ages and lack of evidence of
effectiveness of early interventions
Misdiagnosis
There
is a significant level of misdiagnosis of autism in
neurodevelopmentally normal children; 18–37% of children diagnosed with
ASD eventually lose their diagnosis. This high rate of lost diagnosis
cannot be accounted for by successful ASD treatment alone. The most
common reason parents reported as the cause of lost ASD diagnosis was
new information about the child (73.5%), such as a replacement
diagnosis. Other reasons included a diagnosis given so the child could
receive ASD treatment (24.2%), ASD treatment success or maturation
(21%), and parents disagreeing with the initial diagnosis (1.9%).
Many of the children who were later found not to meet ASD
diagnosis criteria then received diagnosis for another developmental
disorder like ADHD (most common), sensory disorders, anxiety,
personality disorder, or learning disability. Neurodevelopment and psychiatric disorders that are commonly misdiagnosed as ASD include specific language impairment, social communication disorder, anxiety disorder, reactive attachment disorder, cognitive impairment, visual impairment, hearing impairment and normal behavioral variations.
Some normal behavioral variations that resemble autistic traits are
repetitive behaviors, sensitivity to change in daily routines, focused
interests, and toe-walking. These are considered normal behavioral
variations when they do not cause impaired function. Boys are more
likely to exhibit repetitive behaviors especially when excited, tired,
bored, or stressed. Some ways of distinguishing normal behavioral
variations from abnormal behaviors are the ability of the child to
suppress these behaviors and the absence of these behaviors during
sleep.
Prognosis
Few
children who are correctly diagnosed with ASD are thought to lose this
diagnosis due to treatment or outgrowing their symptoms. Children with
poor treatment outcomes also tend to be ones that had moderate to severe
forms of ASD, whereas children who appear to have responded to
treatment are the ones with milder forms of ASD.
Comorbidity
Autism spectrum disorders tend to be highly comorbid with other disorders. Comorbidity
may increase with age and may worsen the course of youth with ASDs and
make intervention/treatment more difficult. Distinguishing between ASDs
and other diagnoses can be challenging, because the traits of ASDs often
overlap with symptoms of other disorders, and the characteristics of
ASDs make traditional diagnostic procedures difficult.
The most common medical condition occurring in individuals with autism spectrum disorders is seizure disorder or epilepsy, which occurs in 11–39% of individuals with ASD.
Tuberous sclerosis, an autosomal dominant
genetic condition in which non-malignant tumors grow in the brain and
on other vital organs, is present in 1–4% of individuals with ASDs.
Learning disabilities
are also highly comorbid in individuals with an ASD. Approximately
25–75% of individuals with an ASD also have some degree of a learning
disability.
Various anxiety disorders tend to co-occur with autism spectrum disorders, with overall comorbidity rates of 7–84%. Rates of comorbid depression in individuals with an ASD range from 4–58%. The relationship between ASD and schizophrenia
remains a controversial subject under continued investigation, and
recent meta-analyses have examined genetic, environmental, infectious,
and immune risk factors that may be shared between the two conditions.
Deficits in ASD are often linked to behavior problems, such as
difficulties following directions, being cooperative, and doing things
on other people's terms. Symptoms similar to those of attention deficit hyperactivity disorder (ADHD) can be part of an ASD diagnosis.
There is no known cure for autism, although those with Asperger syndrome and those who have autism and require little-to-no support are more likely to experience a lessening of symptoms over time. Several interventions can help children with autism. The main goals of treatment are to lessen associated deficits and family distress, and to increase quality of life
and functional independence. In general, higher IQs are correlated with
greater responsiveness to treatment and improved treatment outcomes. Although evidence-based interventions for autistic children vary in their methods, many adopt a psychoeducational
approach to enhancing cognitive, communication, and social skills while
minimizing problem behaviors. It has been argued that no single
treatment is best and treatment is typically tailored to the child's
needs.
Non-pharmacological interventions
Intensive, sustained special education or remedial education programs and behavior therapy early in life can help children acquire self-care, social, and job skills. Available approaches include applied behavior analysis, developmental models, structured teaching, speech and language therapy, social skills therapy, and occupational therapy.
Among these approaches, interventions either treat autistic features
comprehensively, or focus treatment on a specific area of deficit.
Generally, when educating those with autism, specific tactics may be
used to effectively relay information to these individuals. Using as
much social interaction as possible is key in targeting the inhibition
autistic individuals experience concerning person-to-person contact.
Additionally, research has shown that employing semantic groupings,
which involves assigning words to typical conceptual categories, can be
beneficial in fostering learning.
There has been increasing attention to the development of
evidence-based interventions for young children with ASD. Two
theoretical frameworks outlined for early childhood intervention include
applied behavioral analysis (ABA) and the developmental social-pragmatic model (DSP).
Although ABA therapy has a strong evidence base, particularly in regard
to early intensive home-based therapy, ABA's effectiveness may be
limited by diagnostic severity and IQ of the person affected by ASD. The Journal of Clinical Child and Adolescent Psychology
has deemed two early childhood interventions as "well-established":
individual comprehensive ABA, and focused teacher-implemented ABA
combined with DSP.
Another evidence-based
intervention that has demonstrated efficacy is a parent training model,
which teaches parents how to implement various ABA and DSP techniques
themselves. Various DSP programs have been developed to explicitly deliver intervention systems through at-home parent implementation.
A multitude of unresearched alternative therapies have also been
implemented. Many have resulted in harm to autistic people and should
not be employed unless proven to be safe.
However, a recent systematic review on adults with autism has provided
emerging evidence for decreasing stress, anxiety, ruminating thoughts,
anger, and aggression through mindfulness-based interventions for improving mental health.
In October 2015, the American Academy of Pediatrics (AAP)
proposed new evidence-based recommendations for early interventions in
ASD for children under 3.
These recommendations emphasize early involvement with both
developmental and behavioral methods, support by and for parents and
caregivers, and a focus on both the core and associated symptoms of ASD.
However, a Cochrane review found no evidence that early intensive
behavioral intervention (EIBI) is effective in reducing behavioral
problems associated with autism in most children with ASD but did help
improve IQ and language skills. The Cochrane review did acknowledge that
this may be due to the low quality of studies currently available on
EIBI and therefore providers should recommend EIBI based on their
clinical judgement and the family's preferences. No adverse effects of
EIBI treatment were found. Studies on pet therapy have shown positive effects.
Generally speaking, treatment of ASD focuses on behavioral and
educational interventions to target its two core symptoms: social
communication deficits and restricted, repetitive behaviors.
If symptoms continue after behavioral strategies have been implemented,
some medications can be recommended to target specific symptoms or
co-existing problems such as restricted and repetitive behaviors (RRBs),
anxiety, depression, hyperactivity/inattention and sleep disturbance. Melatonin for example can be used for sleep problems.
While there are a number of parent-mediated behavioral therapies
to target social communication deficits in children with autism, there
is uncertainty regarding the efficacy of interventions to treat RRBs.
Pharmacological interventions
There is some emerging data that show positive effects of risperidone on restricted and repetitive behaviors (i.e., stimming;
e.g., flapping, twisting, complex whole-body movements), but due to the
small sample size of these studies and the concerns about its side
effects, antipsychotics are not recommended as primary treatment of
RRBs.
Epidemiology
While rates of autism spectrum disorders are consistent across
cultures, they vary greatly by gender, with boys diagnosed far more
frequently than girls. The average male-to-female diagnosis ratio for
ASDs is 4.2:1, with 1 in 70 boys, but only 1 in 315 girls.
Girls, however, are more likely to have associated cognitive
impairment. Among those with an ASD and intellectual disability, the sex
ratio may be closer to 2:1. Prevalence differences may be a result of gender differences in expression of clinical symptoms, with women and girls with autism showing less atypical behaviors and, therefore, less likely to receive an ASD diagnosis.
Autism prevalence has been estimated at 1–2 per 1,000, Asperger
syndrome at roughly 0.6 per 1,000, childhood disintegrative disorder at
0.02 per 1,000, and PDD-NOS at 3.7 per 1,000. These rates are consistent across cultures and ethnic groups, as autism is considered a universal disorder.
Using DSM-V criteria 92% of the children diagnosed with a autism
spectrum disorder per DSM-IV still meet the diagnostic criteria of an
autism spectrum disorder. However if both Autism Spectrum Disorder and
Social Communication Disorder categories of DSM-V are combined, the prevalence
of autism is mostly unchanged from the prevalence per the DSM-IV
criteria. The best estimate for prevalence of ASD is 0.7% or 1 child in
143 children.
Relatively mild forms of autism, such as Aspergers as well as other
developmental disorders were included in the recent DSM-5 diagnostic
criteria.
ASD rates were constant between 2014 and 2016 but twice the rate
compared to the time period between 2011 and 2014 (1.25 vs 2.47%). A
Canadian meta-analysis from 2019 confirmed these effects as the profiles
of people diagnosed with autism became less and less different from the
profiles of the general population. In the US, the rates for diagnosed ASD have been steadily increasing since 2000 when records began being kept.
While it remains unclear whether this trend represents a true rise in
incidence, it likely reflects changes in ASD diagnostic criteria,
improved detection, and increased public awareness of autism.
United States
In the United States it is estimated to affect more than 2% of children (about 1.5 million) as of 2016.
According to the latest CDC prevalence reports, 1 in 59 children (1.7%)
in the United States had a diagnosis of ASD in 2014, reflecting a
2.5-fold increase from the prevalence rate in 2000. Prevalence is estimated at 6 per 1,000 for autism spectrum disorders as a whole, although prevalence rates vary for each of the developmental disorders in the spectrum.
History
The word autism comes from the greek word "autos" whose meaning was first established by Eugen Bleuler.
Autism as it is known today can be drawn back to the late 1930's. Two
separate psychiatrists used the word autism to describe the patients
they were studying in their own clinical research.
Victor, the Wild Boy of Aveyron,
was found deep in the woods of Central France. He was non-verbal
amongst his teenage years, and his case was widely popular among society
for its time. Such cases brought awareness to autism, and more research
was conducted on the natural dimensions of human behavior.
The discussion of autism prior to the twentieth century is one that
brings about much controversy. Without researchers being able to meet a
consensus on the varying forms around the condition, there was a lack of
research being conducted on the disorder. Discussing the syndrome and
its complexity frustrated researchers.
Controversies have surrounded various claims regarding the etiology of
autism spectrum disorders. In the 1950s, the "refrigerator mother theory"
emerged as an explanation for autism. The hypothesis was based on the
idea that autistic behaviors stem from the emotional frigidity, lack of
warmth, and cold, distant, rejecting demeanor of a child's mother.
Naturally, parents of children with an autism spectrum disorder
suffered from blame, guilt, and self-doubt, especially as the theory was
embraced by the medical establishment and went largely unchallenged
into the mid-1960s. The "refrigerator mother" theory has since continued
to be refuted in scientific literature, including a 2015 systematic
review which showed no association between caregiver interaction and
language outcomes in ASD.
Leo Kanner,
a child psychiatrist, was the first person to describe ASD as a
neurodevelopmental disorder in 1943 by calling it 'infantile autism' and
therefore rejected the 'refrigerator mother' theory.
Another controversial claim suggests that watching extensive
amounts of television may cause autism. This hypothesis was largely
based on research suggesting that the increasing rates of autism in the
1970s and 1980s were linked to the growth of cable television at this
time.
Society and culture
Caregivers
Families who care for an autistic child face added stress from a number of different causes.
Parents may struggle to understand the diagnosis and to find
appropriate care options. Parents often take a negative view of the
diagnosis, and may struggle emotionally.
More than half of parents over the age of 50 are still living with
their child as about 85% of people with ASD have difficulties living
independently.
Autism rights movement
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 autism rights movement advocates for including greater acceptance
of autistic behaviors; therapies that focus on coping skills rather than
imitating the behaviors of those without autism; 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 fringe theories that autism is caused by environmental factors such as vaccines. A common criticism 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.
Academic performance
The
number of students identified and served as eligible for autism
services in the United States has increased from 5,413 children in
1991–1992 to 370,011 children in the 2010–2011 academic school year. The United States Department of Health and Human Services
reported approximately 1 in 68 children at age 8 are diagnosed with
autism spectrum disorder (ASD) although onset is typically between ages 2
and 4.
The increasing number of students with ASD in the schools presents significant challenges to teachers, school psychologists, and other school professionals.
These challenges include developing a consistent practice that best
support the social and cognitive development of the increasing number of
students with ASD.
Although there is considerable research addressing assessment,
identification, and support services for children with ASD, there is a
need for further research focused on these topics within the school
context.
Further research on appropriate support services for students with ASD
will provide school psychologists and other education professionals with
specific directions for advocacy and service delivery that aim to
enhance school outcomes for students with ASD.
Attempts to identify and use best intervention practices for
students with autism also pose a challenge due to overdependence on
popular or well-known interventions and curricula.
Some evidence suggests that although these interventions work for some
students, there remains a lack of specificity for which type of student,
under what environmental conditions (one-on-one, specialized
instruction or general education) and for which targeted deficits they
work best.
More research is needed to identify what assessment methods are most
effective for identifying the level of educational needs for students
with ASD.
A difficulty for academic performance in students with ASD is the tendency to generalize learning.
Learning is different for each student, which is the same for students
with ASD. To assist in learning, accommodations are commonly put into
place for students with differing abilities. The existing schema of
these students works in different ways and can be adjusted to best
support the educational development for each student.
The cost of educating a student with ASD in the US is about
$8,600 a year more than the cost of educating an average student, which
is about $12,000.
Employment
About half of people in their 20s with autism are unemployed, and one third of those with graduate degrees may be unemployed.
While employers state hiring concerns about productivity and
supervision, experienced employers of autistics give positive reports of
above average memory and detail orientation as well as a high regard
for rules and procedure in autistic employees. A majority of the economic burden of autism is caused by lost productivity in the job market. Some studies also find decreased earning among parents who care for autistic children.
Adding content related to autism in existing diversity training can
clarify misconceptions, support employees, and help provide new
opportunities for autistics.
