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What is Autism?
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Is there More than One Type of Autism?
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What Causes Autism?
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How is Autism Diagnosed?
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What are People with Autism Like?
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What are the Most Effective Approaches to Autism?
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Is there a Cure for Autism?
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The Autism Society of America
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The Autism Society of America Foundation
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Autism Check List
Autism is a complex developmental disability that typically appears
during the first three years of life. 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 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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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:
- Autistic Disorder
- impairments in social interaction,
communication, and imaginative play prior to age 3 years. Stereotyped
behaviors, interests and activities.
- Asperger's Disorder
- characterized by impairments in social
interactions and the presence of restricted interests and activities, with
no clinically significant general delay in language, and testing in the
range of average to above average intelligence.
- Pervasive Developmental Disorder- Not Otherwise Specified
- (commonly referred to as atypical autism) a diagnosis of PDD-NOS may be made when a child does not meet the criteria for a specific diagnosis, but there is a severe and pervasive impairment in specified behaviors.
- Rett's Disorder
- a progressive disorder which, to date, has
occurred only in girls. Period of normal development and then loss of
previously acquired skills, loss of purposeful use of the hands replaced
with repetitive hand movements beginning at the age of 1-4 years.
- Childhood Disintegrative Disorder
- characterized by normal
development for at least the first 2 years, significant loss of previously
acquired skills. (American Psychiatric Association 1994)
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.
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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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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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Children within the pervasive developmental disorder spectrum often appear relatively
normal in their development until the age of 24-30 months, when parents may notice delays
in language, play or social interaction. Any of the following delays, by themselves, would not
result in a diagnosis of a pervasive developmental disorder. Autism is a combination of
several developmental challenges.
The following areas are among those that may be affected by autism:
- Communication:
- 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;
- Social Interaction:
- spends time alone rather than with others;
shows little interest in making friends; less responsive to social cues such as eye contact or
smiles;
- Sensory Impairment:
- may have sensitivities in the areas of
sight, hearing, touch, smell, and taste to a greater or lesser degree;
- Play:
- lack of spontaneous or imaginative play; does not imitate
others' actions; does not initiate pretend games;
- Behaviors:
- 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); apparent lack of common sense; may show aggression to others or self;
often has difficulty with changes in routine.
Some individuals with autism may also have other disorders which affect the functioning of
the brain such as: Epilepsy, Mental Retardation, Down Syndrome, or genetic disorders such
as: Fragile X Syndrome, Landau-Kleffner Syndrome, William's Syndrome or Tourette's
Syndrome. Many of those diagnosed with autism will test in the range of mental retardation.
Approximately 25-30 percent may develop a seizure pattern at some period during life.
Every person with autism is an individual, and like all individuals, has a unique personality
and combination of characteristics. There are great differences among people with autism.
Some individuals mildly affected may exhibit only slight delays in language and greater
challenges with social interactions. The person may have difficulty initiating and/or
maintaining a conversation, or keeping a conversation going. Communication is often
described as talking at others (for example, monologue on a favorite subject that continues
despite attempts of others to interject comments). People with autism process and respond
to information in unique ways. Educators and other service providers must consider the
unique pattern of learning strengths and difficulties in the individual with autism when
assessing learning and behavior to ensure effective intervention. Individuals with autism
can learn when information about their unique styles of receiving and expressing information
is addressed and implemented in their programs. The abilities of an individual with autism
may fluctuate from day to day due to difficulties in concentration, processing, or anxiety. The
child may show evidence of learning one day, but not the next. Changes in external stimuli
and anxiety can affect learning. They may have average or above average verbal, memory or
spatial skills but find it difficult to be imaginative or join in activities with others. Individuals
with more severe challenges may require intensive support to manage the basic tasks and
needs of living day to day.
Contrary to popular understanding, many children and adults with autism may make eye
contact, show affection, smile and laugh, and demonstrate a variety of other emotions,
although in varying degrees. Like other children, they respond to their environment in both
positive and negative ways. Autism may affect their range of responses and make it more
difficult to control how their bodies and minds react. Sometimes visual, motor, and/or
processing problems make it difficult to maintain eye contact with others. Some individuals
with autism use peripheral vision rather than looking directly at others. Sometimes the touch
or closeness of others may be painful to a person with autism, resulting in withdrawal even
from family members. Anxiety, fear and confusion may result from being unable to "make
sense" of the world in a routine way. With appropriate treatment, some behaviors associated
with autism may change or diminish over time. The communication and social deficits
continue in some form throughout life, but difficulties in other areas may fade or change with
age, education, or level of stress. Often, the person begins to use skills in natural situations
and to participate in a broader range of interests and activities. Many individuals with autism
enjoy their lives and contribute to their community in a meaningful way. People with autism
can learn to compensate for and cope with their disability, often quite well.
While no one can predict the future, it is known that some adults with autism live and work
independently in the community (drive a car, earn a college degree, get married); some may
be fairly independent in the community and only need some support for daily pressures;
while others depend on much support from family and professionals. Adults with autism
can benefit from vocational training to provide them with the skills needed for obtaining jobs,
in addition to social and recreational programs. Adults with autism may live in a variety of
residential settings, ranging from an independent home or apartment to group homes,
supervised apartment settings, living with other family members or more structured
residential care. An increasing number of support groups for adults with autism are
emerging around the country. Many self-advocates are forming networks to share
information, support each other, and speak for themselves in the public arena. More
frequently, people with autism are attending and/or speaking at conferences and workshops
on autism. Individuals with autism are providing valuable insight into the challenges of this
disability by publishing articles and books and appearing in television specials about
themselves and their disabilities.
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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 in-service 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, is the focus at the ASA.
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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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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 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 in Prevalence 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. To request additional information or to find answers to other questions on autism, please call or write the ASA. We are here to help.
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