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What is Autism?
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Autism is a complex
developmental disability that typically
appears during the first three years of
life. Autism significantly affects
verbal and nonverbal communication and
social interaction which adversely
affects a child's educational
performance. Symptoms range from mild to
severe. Activities that are often
associated with autism are engagement in
repetitive activities and stereotyped
movements, resistance to environmental
change or change in daily routines, and
unusual responses to sensory
experiences. The result of a
neurological disorder that affects the
functioning of the brain, autism and its
associated behaviors have been estimated
to occur in as many as 1 in 500
individuals (Centers for Disease Control
and Prevention 1997). Autism is four
times more prevalent in boys than girls
and knows no racial, ethnic, or social
boundaries. Family income, lifestyle,
and educational levels do not affect the
chance of autism's occurrence.
Autism is a spectrum
disorder. In other words, the
symptoms and characteristics of autism
can present themselves in a wide variety
of combinations, from mild to severe.
Although autism is defined by a certain
set of behaviors, children and adults
can exhibit any combination of the
behaviors in any degree of severity. Two
children, both with the same diagnosis,
can act very differently from one
another and have varying skills.
Therefore, there is no
standard "type" or "typical" person with
autism. Parents may hear different terms
used to describe children within this
spectrum, such as: autistic-like,
autistic tendencies, autism spectrum,
high-functioning or low-functioning
autism, more-abled or less-abled. More
important to understand is, whatever the
diagnosis, children can learn and
function productively and show gains
from appropriate education and
treatment. The Autism Society of America
provides information to serve the needs
of all individuals within the spectrum.
Diagnostic categories
have changed over the years as research
progresses and as new editions of the
DSM have been issued. For that reason,
we will use the term "autism" to refer
to the above disorders.
Autism impacts the normal
development of the brain in the areas of
social interaction and communication
skills. Children and adults with autism
typically have difficulties in verbal
and non-verbal communication, social
interactions, and leisure or play
activities. The disorder makes it hard
for them to communicate with others and
relate to the outside world. In some
cases, aggressive and/or self-injurious
behavior may be present. Persons with
autism may exhibit repeated body
movements (hand flapping, rocking),
unusual responses to people or
attachments to objects and resistance to
changes in routines. Individuals may
also experience sensitivities in the
five senses of sight, hearing, touch,
smell, and taste.
Over one half million
people in the U.S. today have autism or
some form of pervasive developmental
disorder. Its prevalence rate makes
autism one of the most common
developmental disabilities. Yet most of
the public, including many professionals
in the medical, educational, and
vocational fields, are still unaware of
how autism affects people and how they
can effectively work with individuals
with autism. |
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What Causes
Autism? |
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Researchers from all over the
world are devoting considerable time and energy
into finding the answer to this critical
question. Medical researchers are exploring
different explanations for the various forms of
autism. Although a single specific cause of
autism is not known, current research links
autism to biological or neurological differences
in the brain. In many families there appears to
be a pattern of autism or related disabilities—
which suggests there is a genetic basis to the
disorder—although at this time no gene has been
directly linked to autism. The genetic basis is
believed by researchers to be highly complex,
probably involving several genes in combination.
Several outdated theories
about the cause of autism have been proven to be
false. Autism is not a mental illness. Children
with autism are not unruly kids who choose not
to behave. Autism is not caused by bad
parenting. Furthermore, no known psychological
factors in the development of the child have
been shown to cause autism. |
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How is Autism
Diagnosed? |
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There are no medical tests for
diagnosing autism. An accurate diagnosis must be
based on observation of the individual's
communication, behavior, and developmental
levels. However, because many of the behaviors
associated with autism are shared by other
disorders, various medical tests may be ordered
to rule out or identify other possible causes of
the symptoms being exhibited.
Since the characteristics of the
disorder vary so much, ideally a child should be
evaluated by a multidisciplinary team which may
include a neurologist, psychologist,
developmental pediatrician, speech/language
therapist, learning consultant, or another
professional knowledgeable about autism.
Diagnosis is difficult for a practitioner with
limited training or exposure to autism.
Sometimes, autism has been misdiagnosed by
well-meaning professionals. Difficulties in the
recognition and acknowledgment of autism often
lead to a lack of services to meet the complex
needs of individuals with autism.
A brief observation in a
single setting cannot present a true picture of
an individual's abilities and behaviors.
Parental (and other caregivers') input and
developmental history are very important
components of making an accurate diagnosis. At
first glance, some persons with autism may
appear to have mental retardation, a behavior
disorder, problems with hearing, or even odd and
eccentric behavior. To complicate matters
further, these conditions can co-occur with
autism. However, it is important to distinguish
autism from other conditions, since an accurate
diagnosis and early identification can provide
the basis for building an appropriate and
effective educational and treatment program.
Sometimes professionals who are not
knowledgeable about the needs and opportunities
for early intervention in autism do not offer an
autism diagnosis even if it is appropriate. This
hesitation may be due to a misguided wish to
spare the family. Unfortunately, this too can
lead to failure to obtain appropriate services
for the child. |
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Is There More
Than One Type of Autism? |
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Several related disorders are
grouped under the broad heading "Pervasive
Developmental Disorder" or PDD-a general
category of disorders which are characterized by
severe and pervasive impairment in several areas
of development (American Psychiatric Association
1994). A standard reference is the Diagnostic
and Statistical Manual (DSM), a diagnostic
handbook now in its fourth edition. The DSM-IV
lists criteria to be met for a specific
diagnosis under the category of Pervasive
Developmental Disorder. Diagnosis is made when a
specified number of characteristics listed in
the DSM-IV are present. Diagnostic evaluations
are based on the presence of specific behaviors
indicated by observation and through parent
consultation, and should be made by an
experienced, highly trained team. Thus, when
professionals or parents are referring to
different types of autism, often they are
distinguishing autism from one of the other
pervasive developmental disorders.
Individuals who fall under the
Pervasive Developmental Disorder category in the
DSM-IV exhibit commonalties in communication and
social deficits, but differ in terms of
severity. We have outlined some major points
that help distinguish the differences between
the specific diagnoses used: |
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Communication: |
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Language develops slowly or not
at all; uses words without attaching the usual
meaning to them; communicates with gestures
instead of words; short attention span; |
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Social Interaction: |
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Spends time alone rather than
with others; shows little interest in making
friends; less responsive to social cues such as
eye contact or smiles; |
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Sensory Impairment: |
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May have sensitivities in the
areas of sight, hearing, touch, smell, and taste
to a greater or lesser degree; |
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Play: |
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Lack of spontaneous or
imaginative play; does not imitate others'
actions; does not initiate pretend games; |
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Behaviors: |
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May be overactive or very
passive; throws tantrums for no apparent reason;
perseverates (shows an obsessive interest in a
single item, idea, activity or person |
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Is There a
Cure? |
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Understanding of autism has grown
tremendously since it was first described by Dr.
Leo Kanner in 1943. Some of the earlier searches
for "cures" now seem unrealistic in terms of
today's understanding of brain-based disorders.
To cure means "to restore to health, soundness,
or normality." In the medical sense, there is no
cure for the differences in the brain which
result in autism. However, better understanding
of the disorder has led to the development of
better coping mechanisms and strategies for the
various manifestations of the disability. Some
of these symptoms may lessen as the child ages;
others may disappear altogether. With
appropriate intervention, many of the associated
behaviors can be positively changed, even to the
point in some cases, that the child or adult may
appear to the untrained person to no longer have
autism. The majority of children and adults
will, however, continue to exhibit some
manifestations of autism to some degree
throughout their entire lives. |
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What are the
Most Effective Approaches? |
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Evidence shows that early
intervention results in dramatically positive
outcomes for young children with autism. While
various pre-school models emphasize different
program components, all share an emphasis on
early, appropriate, and intensive educational
interventions for young children. Other common
factors may be: some degree of inclusion, mostly
behaviorally based interventions, programs which
build on the interests of the child, extensive
use of visuals to accompany instruction, highly
structured schedule of activities, parent and
staff training, transition planning and
follow-up. Because of the spectrum nature of
autism and the many behavior combinations which
can occur, no one approach is effective in
alleviating symptoms of autism in all cases.
Various types of therapies are available,
including (but not limited to) applied behavior
analysis, auditory integration training, dietary
interventions, discrete trial teaching,
medications, music therapy, occupational
therapy, PECS, physical therapy, sensory
integration, speech/language therapy, TEACCH,
and vision therapy.
Studies show that individuals
with autism respond well to a highly structured,
specialized education program, tailored to their
individual needs. A well designed intervention
approach may include some elements of
communication therapy, social skill development,
sensory integration therapy and applied behavior
analysis, delivered by trained professionals in
a consistent, comprehensive and coordinated
manner. The more severe challenges of some
children with autism may be best addressed by a
structured education and behavior program which
contains a one-on-one teacher to student ratio
or small group environment. However, many other
children with autism may be successful in a
fully inclusive general education environment
with appropriate support.
In addition to appropriate
educational supports in the area of academics,
students with autism should have training in
functional living skills at the earliest
possible age. Learning to cross a street safely,
to make a simple purchase or to ask assistance
when needed are critical skills, and may be
difficult, even for those with average
intelligence levels. Tasks that enhance the
person's independence and give more opportunity
for personal choice and freedom in the community
are important.
To be effective, any approach
should be flexible in nature, rely on positive
reinforcement, be re-evaluated on a regular
basis and provide a smooth transition from home
to school to community environments. A good
program will also incorporate training and
support systems for parents and caregivers, with
generalization of skills to all settings. Rarely
can a family, classroom teacher or other
caregiver provide effective habilitation for a
person with autism unless offered consultation
or inservice training by an experienced
specialist who is knowledgeable about the
disability.
A generation ago, the vast
majority of the people with autism were
eventually placed in institutions. Professionals
were much less educated about autism than they
are today; autism specific supports and services
were largely non-existent. Today the picture is
brighter. With appropriate services, training,
and information, most families are able to
support their son or daughter at home. Group
homes, assisted apartment living arrangements,
or residential facilities offer more options for
out of home support. Autism-specific programs
and services provide the opportunity for
individuals to be taught skills which allow them
to reach their fullest potential.
Families of people with autism
can experience high levels of stress. As a
result of the challenging behaviors of their
children, relationships with service providers,
attempting to secure appropriate services,
resulting financial hardships, or very busy
schedules, families often have difficulty
participating in typical community activities.
This results in isolation and difficulty in
developing needed community supports. The Autism
Society of America is here for you.
Members of the ASA represent
all walks of life from rural to metropolitan
communities. Embracing the diversity of our
group, the ASA seeks to provide an open forum
for the exchange of ideas. At the very core of
the ASA's philosophy is the belief that no
single program or treatment will benefit all
individuals with autism. Furthermore, the
recommendation of what is "best" or "most
effective" for a person with autism should be
determined by those people directly involved—the
individual with autism, to the extent possible,
and the parents or family members.
The ASA provides information
and education (including results of
empirically-based scientific research on
effective strategies) to assist parents,
educators, and others in the decision-making
process. Providing information on available
intervention options, rather than advocating for
any particular theory or philosophy. |
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What is
the Autism Society of America? |
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Founded in 1965 by a small group
of parents, the Autism Society of America (ASA)
continues to be the leading source of
information and referral on autism and the
largest collective voice representing the autism
community for more than 33 years. Today, more
than 24,000 members are connected through a
volunteer network of over 240 chapters in 50
states. The mission of
the Autism Society of America is to promote
lifelong access and opportunities for persons
within the autism spectrum and their families,
to be fully included, participating members of
their communities through advocacy, public
awareness, education, and research related to
autism. In addition to its volunteer Board of
Directors, composed primarily of parents of
individuals with autism, the ASA has a Panel of
Professional Advisors, comprised of nationally
known and respected professionals who provide
expertise and guidance to the Society on a
volunteer basis.
The ASA is dedicated to increasing public
awareness about autism and the day-to-day issues
faced by individuals with autism, their
families, and the professionals with whom they
interact. The Society and its chapters share
common goals of providing information and
education, supporting research, and advocating
for programs and services for the autism
community. |
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The ASA
Foundation |
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The Autism Society of
America Foundation (ASAF) was founded with the
primary mission to raise and allocate funds for
research to address the many unanswered
questions about autism. We are still far from
fully understanding autism and knowing how to
prevent it.
The ASAF has
implemented action on several pressing autism
research priorities as areas of initial focus:
developing and publicizing up-to-date prevalence
statistics; quantifying the societal and family
economic consequences of autism; developing a
national registry of individuals and families
with autism who are willing to participate in
research studies; and implementing a system to
identify potential donors of autism brain tissue
for research purposes and facilitating the
donation process. In addition, the Foundation is
contributing substantial funds for applied and
biomedical research in the causes of and
treatment approaches to autism.
References: Dr. Christopher
Gillberg, Centers for Disease Control and
Prevention Conference. Autism: Emerging
Issues inPrevalence and Etiology. 1997
Diagnostic and Statistical Manual of Mental
Disorders 4th ed., (DSM-IV). American
Psychiatric Association, Washington, DC. 1994.
Where Can I Get More
Information?
Educating yourself and others about autism is a
critical way to assist with the education and
development of the individual with autism and to
help society understand the nature of this
common developmental disorder. Information
packages on a variety of autism-related topics
are available from the Autism Society of
America. |
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