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Autism is a developmental disability that affects
a person's ability to communicate, understand language, play, and interact
with others. Autism is a behavioral syndrome, which means that its definition
is based on patterns of behaviors that a person exhibits. Autism is not
an illness or a disease. It is not contagious and, as far as we know,
it is not acquired through contact with the environment. Autism is a neurological
disability that is presumed to be present from birth and is always apparent
before the age of three. Although autism affects the functioning of the
brain, the specific cause of autism is unknown. In fact, it is widely
assumed that there are most likely multiple causes, each of which may
be manifested in different forms, or subtypes, of autism. Future research
will help us understand the etiologies of autism.
Autism Spectrum Disorder (ASD) is an increasingly popular
term that refers to a broad definition of autism including the classical
form of the disorder as well as closely related disabilities that share
many of the core characteristics. ASD includes the following diagnoses
and classifications: (1) Pervasive Developmental Disorder-Not Otherwise
Specified (PDD-NOS), which refers to a collection of features that resemble
autism but may not be as severe or extensive; (2) Rett's syndrome, which
affects girls and is a genetic disorder with hard neurological signs,
including seizures, that become more apparent with age; (3) Asperger syndrome,
which refers to individuals with autistic characteristics but relatively
intact language abilities, and; (4) Childhood Disintegrative Disorder,
which refers to children whose development appears normal for the first
few years, but then regresses with the loss of speech and other skills
until the characteristics of autism are conspicuous. Although the classical
form of autism can be readily distinguished from other forms of ASD, the
terms autism and ASD are often used interchangeably.
Individuals with autism and ASD vary widely in ability
and personality. Individuals can exhibit severe mental retardation or
be extremely gifted in their intellectual and academic accomplishments.
While many individuals prefer isolation and tend to withdraw from social
contact, others show high levels of affection and enjoyment in social
situations. Some people with autism appear lethargic and slow to respond,
but others are very active and seem to interact constantly with preferred
aspects of their environment.
Behavioral Description
Individuals with autism are characterized primarily
by developmental difficulties in verbal and nonverbal communication, social
relatedness, and leisure and play activities. All individuals with autism
experience substantial problems with social interactions. In addition, people
with autism often exhibit unusual, repetitive, and perseverative movements
(including stereotyped and self-stimulatory behaviors), resistance to changes
in routines and in other features of their environments, apparent oversensitivity
or undersensitivity to specific kinds of stimulation, and extreme tantrums,
aggression or other forms of acting out behavior. It is also observed that
individuals with autism have uneven patterns of skill development. Some
people display superior abilities in particular areas (such as music, mechanics,
and arithmetic calculations), while other areas show significant delay.
Diagnosis and Evaluation
The principal source for diagnosing autism is the
Diagnostic and Statistical Manual of the American Psychiatric Association,
Fourth Edition (DSM-IV,1994). Although children affected by autism are being
identified at earlier ages than was the case previously, the diagnosis usually
does not occur until sometime between two and three years of age. Diagnosticians
are often reluctant to issue a formal diagnosis before the age at which
complex language is expected to emerge. However, early intervention services
can still be provided on the basis of developmental delay, even without
a formal diagnosis of autism.
A diagnosis of autism is often provided by developmental
pediatricians, psychologists, child psychiatrists, or neurologists. At
the time of (or prior to) diagnosis, a comprehensive evaluation is typically
arranged. Such an evaluation usually includes a neurological examination,
tests for biochemical abnormalities, and other assessments designed to
rule out physical and diagnostic conditions. A battery of developmental
and educational evaluations is also conducted to help develop an appropriate
early intervention plan. Family involvement is integral to this entire
process.
Prevalence
In 1997, the Centers for Disease Control and Prevention
(1999) estimated that a broad definition of autism may be present in as
many as one person out of every 500. This estimate suggests that there are
roughly 500,000 people in the United States who could be described as having
autism or autism spectrum disorder.
It is well established that autism occurs in four times
as many boys as girls (NICHCY, 1999) and that there are no known racial,
social, economic, or cultural distinctions. Although it is possible that
there are some genetic linkages with some forms of autism, there are no
associations with particular familial or cultural histories or practices.
Earlier theories that implicated parents' behavior in the occurrence of
autism have been thoroughly discredited.
There have been occasional speculations about clusters
of autism in some areas of the country, and it has been suggested that
such clusters may be associated with environmental contaminants or regional
medical practices. To date, however, there have been no clear data that
support these speculations.
Approaches to Intervention and Educational
Support
Since autism was first identified as a syndrome more
than 50 years ago, a variety of intervention strategies have been suggested.
These interventions and treatments have risen from a range of theoretical
positions, but most have not proven to be effective with large numbers of
children. This pattern continues today, with a large number of diverse treatment
approaches being touted as uniquely effective in resolving patterns of autistic
behavior. For the most part, such claims have not been substantiated in
controlled research. The message for families, teachers, and other consumers
is to be cautious when considering new, grandiose testimonials, and to be
very thoughtful and selective when constructing plans for intervention and
support.
Even though autism has attracted an array of spurious
treatments, a good deal of real progress has occurred, and some very credible
approaches have been demonstrated repeatedly to be effective in improving
the behaviors and adaptability of people with autism. Interventions that
are derived from an educational and behavioral orientation have been shown
to help children and adults affected by autism, primarily by teaching
new skills that enable the person to function more successfully in the
daily world of home, school, work, and community interactions. Years of
research and experience have produced some relevant guidelines for providing
instruction and intervention for individuals with autism. For example,
it is important that interventions be developed on an individualized basis.
The label of autism by itself is not prescriptive. It does not indicate
what intervention should be provided or how intervention should be provided.
As a set of general rules, it is widely agreed that
people with autism respond better in a context where there is structure
and clear guidelines regarding expectations for appropriate and inappropriate
behavior. It is also recommended that the environment include systems
or materials, such as written or picture schedules, that can help the
person to comprehend and predict the flow and sequence of activities.
The focus of intervention and instructional efforts should be to develop
functional skills that will be of immediate and ongoing value in the context
of daily living. This typically includes strategies for enhancing a person's
ability to communicate, to understand language, and to get along socially
in complex home, school, work, and community settings.
Another important guideline for intervention pertains
to family involvement. To the greatest extent possible, family members
should be encouraged to participate in all aspects of assessment, curriculum
planning, instruction, and monitoring. Parents and other family members
very often have the most useful information about an individual's history
and learning characteristics, so effective intervention and instruction
should take advantage of this vital resource. Furthermore, because families
are so essential in the lives of people with autism, family support that
helps strengthen the family system is regarded as a vital element in providing
effective intervention for people with autism.
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References
American Psychiatric Association. (1994).(4th
ed.). Diagnostic and statistical manual of mental disorders. Washington,
DC: Author.
Centers for Disease Control. (1999). Autism
among children. (On-line). Available: fact sheet at http:www.cdc.gov/nceh/programs/cddh/dautism.htm.
National Information Center for Children and
Youth with Disabilities.( 1999). Autism and pervasive developmental
disorder. (Fact Sheet Number 1). Available from NICHCY, PO Box 1492,
Washington, DC 20013. 1-800-695-0285. Also available online at http://www.nichcy.org/pubs/factshe/fs1txt.htm.
Readings and Resources on Autism, ERIC Minibibliography
No. E13.
Resources
WEB Sites:
Autism Center http://www.patientcenters.com/autism/news/pdd47990601.htm
Autism Resources http://www.autism-resources.com
OASIS (information about Asperger Syndrome)
http://www.udel.edu/bkirby/asperger/#education
TEACCH Program (Treatment and Education of Autistic
and Related Communication Handicapped Children) University of North
Carolina, Chapel Hill. http://www.unc.edu/depts/teacch/
Organizations:
Autism Society of America, 7910 Woodmont Avenue,
Suite 650, Bethesda, MD 20814-3015, (301) 657-0881 http://www.autism-society.org
Autism Research Institute, 4182 Adams Avenue,
San Diego, CA 92116, (619) 281-7165 http://www.autism.com/ari
Cure Autism Now (CAN), 5225 Wilshire Blvd.,
Suite 503 Los Angeles, CA 90036, (213) 549-0500 Email: CAN@primenet.com
Newsletters and Journals
Journal of Autism and Developmental Disorders,
Plenum Publishing Corp., 227 W. 17th St., New York, NY 10011
Focus on Autism and Other Developmental Disabilities,
PRO-ED, 8700 Shoal Creek Blvd., Austin, TX 78757-6897
Journal of Positive Behavior Interventions,
PRO-ED, 8700 Shoal Creek Blvd., Austin, TX 78757-6897
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