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What is Autism
and Pervasive Developmental Disorder (PDD)?
Fact Sheet Number 1 (FS1),
April 2007, NICHCY
Ryan is a healthy, active two-year-old, but his parents are
concerned because he doesn’t seem to be doing things they expect him to do,
things that his older sister did at this age. He hasn’t started talking,
yet; although sometimes, he repeats, over and over, words that he hears
others say. He doesn’t really use words to communicate, though. It seems he
just enjoys the sounds of them. Ryan spends a lot of time playing by
himself. He has a few favorite toys, mostly cars, or anything with wheels on
it! And sometimes, he spins himself around as fast as he does the wheels on
his cars. Ryan’s parents are really concerned, since he’s started throwing a
tantrum whenever his routine has the smallest change. More and more, his
parents feel helpless, never knowing what might trigger Ryan’s next upset.
Often, it seems Ryan doesn’t notice or care if his family or
anyone else is around. His parents just don’t know how to reach their
little boy, who seems so rigid and far too set in his ways for his
tender young age. After talking with their family doctor, Ryan’s parents
call the Early Intervention office in their community and make an
appointment to have Ryan evaluated.
When the time comes, Ryan is seen by several professionals who play with
him, watch him, and ask his parents a lot of questions. When they’re all
done, Ryan is diagnosed with a form of autism. As painful as this is for his
parents to learn, the early intervention staff try to encourage them. By
getting an early diagnosis and beginning treatment, Ryan has the best chance
to grow and develop. Of course, there’s a long road ahead, but his parents
take comfort in knowing that they aren’t alone and they’re
getting Ryan the help he needs.
Autism/Pervasive Developmental Disorder (PDD)
is a neurological disorder that affects a child’s ability to
communicate, understand language, play, and relate to others. PDD
represents a distinct category of developmental disabilities that share
many of the same characteristics.
The different diagnostic terms that fall within the broad meaning of PDD,
include:
• Autistic Disorder,
• Asperger’s Disorder,
• Rett’s Disorder,
• Childhood Disintegrative Disorder, and
• Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).
While there are subtle differences and
degrees of severity among these conditions, treatment and educational
needs can be very similar for all of them.
In the diagnostic manual used to classify mental disorders, the DSM-IV-TR
(American Psychiatric Association, 2000), “Autistic Disorder” is listed
under the heading of “Pervasive Developmental Disorders.” A diagnosis of
autistic disorder is made when an individual displays 6 or more of 12
symptoms across three major areas: (a) social interaction, (b)
communication, and (c) behavior. When children display similar behaviors
but do not meet the specific criteria for autistic disorder (or the
other disorders listed above), they may receive a diagnosis of Pervasive
Developmental Disorder Not Otherwise Specified, or PDD-NOS.
Autism is one of the disabilities specifically defined in the
Individuals with Disabilities Education Act (IDEA), the federal
legislation under which infants, toddlers, children, and youth with
disabilities receive early intervention, special education and related
services. IDEA defines the disorder as “a developmental disability
significantly affecting verbal and nonverbal communication and social
interaction, generally evident before age 3, that adversely affects a
child’s educational performance. Other characteristics 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.” (See 34 Code of
Federal Regulations §300.8(c)(1).)
Information from the
National Institute of Mental Health and the Center for Disease Control
and Prevention (CDC) indicates that between 2 to 6 per 1,000 children
(from 1 in 500 to 1 in 150) have some form of autism/PDD. These
disorders are four times more common in boys than in girls, although
Rett’s Disorder has only been reported and diagnosed in girls.
The causes of autism or PDD are unknown. Currently, researchers are
investigating areas such as brain development, structure, genetic
factors and biochemical imbalance in the brain as possible causes. These
disorders are not caused by psychological factors.
What are the Signs of Autism / PDD?
Some or all of the following characteristics may be observed
in mild to severe forms:
• Communication problems (e.g., using and understanding
language);
• Difficulty relating to people, objects, and events;
• Unusual play with toys and other objects;
• Difficulty with changes in routine or familiar surroundings; and
• Repetitive body movements or behavior patterns.
Children with autism or PDD vary widely in abilities,
intelligence, and behaviors. Some children do not speak; others have
language that often includes repeated phrases or conversations. Children
with more advanced language skills tend to use a small range of topics and
have difficulty with abstract concepts. Repetitive play skills, a limited
range of interests, and impaired social skills are generally evident as
well. Unusual responses to sensory information—for example, loud noises,
lights, certain textures of food or fabrics—are also common.
What Research is Being Done?
Thanks to federal
legislation—the Children’s Health Act of 2000 and the Combating Autism
Act of 2006—nearly $1 billion over the next five years (2007-2012) has
been authorized to combat autism through research, screening, early
detection, and early intervention. The National Institutes of Health and
the CDC are the lead entities conducting and coordinating multiple
research activities. On the education front, the PDA Center at the
University of Washington has several sites around the country that
provide training and support to schools and families for students with
autism spectrum disorders. Research on instructional interventions for
children with a broad range of needs is an ongoing national endeavor.
Check NICHCY’s Research to Practice database and OSEP’s discretionary
projects directories on our web site to learn more. Additional
information can also be found on the web sites included in the list of
Organizations at the end of this publication.
Early diagnosis and
intervention are very important for children with autism/PDD. Under the
Individuals with Disabilities Education Act (IDEA), children with
autism/PDD may be eligible for early intervention services (birth to 3)
and an educational program appropriate to their individual needs. In
addition to academic instruction, special education programs for
students with autism/PDD (ages 3 to 22) focus on improving
communication, social, academic, behavioral, and daily living skills.
Behavior and communication problems that interfere with learning often
require the assistance of a professional who is particularly
knowledgeable in the autism field to develop and help implement a plan
which can be carried out at home and school.
The classroom environment should be structured so that the program is
consistent and predictable. Students with autism/PDD learn better and
are less confused when information is presented visually as well as
verbally. Interaction with nondisabled peers is also important, for
these students provide models of appropriate language, social, and
behavioral skills. Consistency and continuity are very important for
children with autism/PDD, and parents should always be involved in the
development of their child’s program, so that learning activities,
experiences, and approaches will be most effective and can be carried
over into the home and community.
With educational programs designed to meet a student’s individual needs
and specialized adult support services in employment and living
arrangements, many children and adults with autism/PDD grow to live,
work, and participate fully in their communities.
Learn about autism/PDD. The more you
know, the more you can help yourself and your child. Your State’s PTI
can be especially helpful. You’ll find resources and organizations at
the end of this publication and in NICHCY’s online State Resources
Sheet.
Be mindful to interact with and teach your child in ways that are most
likely to get a positive response. Learn what is likely to trigger
melt-downs for your child, so you can try to minimize them. Remember,
the earliest years are the toughest, but it does get better!
Learn from professionals and other parents how to meet your child’s
special needs, but remember your son or daughter is first and foremost a
child; life does not need to become a never-ending round of therapies.
If you weren’t born loving highly structured, consistent schedules and
routines, ask for help from other parents and professionals on how to
make it second nature for you. Behavior, communication, and social
skills can all be areas of concern for a child with autism and
experience tells us that maintaining a solid, loving, and structured
approach in caring for your child, can help greatly.
Learn about assistive technology that can help your child. This may
include a simple picture communication board to help your child express
needs and desires, or may be as sophisticated as an augmentative
communication device.
Work with professionals in early intervention or in your school to
develop an IFSP or an IEP that reflects your child’s needs and
abilities. Be sure to include related services, supplementary aids and
services, AT, and a positive behavioral support plan, if needed.
Be patient, and stay optimistic. Your child, like every child, has a
whole lifetime to learn and grow.
Learn more about autism/PDD.
Check out the research on effective instructional interventions and
behavior on NICHCY’s web site. The
resources and organizations listed in this publication can also help.
Make sure directions are given step-by-step, verbally, visually, and by
providing physical supports or prompts, as needed by the student.
Students with autism spectrum disorders often have trouble interpreting
facial expressions, body language, and tone of voice. Be as concrete and
explicit as possible in your instructions and feedback to the student.
Find out what the student’s strengths and interests are and emphasize
them. Tap into those avenues and create opportunities for success. Give
positive feedback and lots of opportunities for practice.
Build opportunities for the student to have social/collaborative
interactions throughout the regular school day. Provide support,
structure, and lots of feedback.
If behavior is a significant issue for the student, seek help from
expert professional resources (including parents) to understand the
meanings of the behaviors and to develop a unified, positive approach to
resolving them.
Have consistent routines and schedules. When you know a change in
routine will occur (e.g., a field trip or assembly) prepare the student
by telling him or her what is going to be different and what to expect
or do. Reward students for each small success.
Work together with the student’s parents and other school personnel to
create and implement an educational plan tailored to meet the student’s
needs. Regularly share information about how the student is doing at
school and at home.
Baldi, H., & Detmers, D. (2000).
Embracing Play - Teaching Your Child with Autism . Video.
Bethesda, MD: Woodbine House.
Bondy, Andy, and Frost, Lori. (2002)
A Picture's
Worth: PECS and Other Visual Communication Strategies in Autism. Bethesda, MD.
Woodbine House. 800-843-7323. [The authors explain how to use
picture symbols, called PECS, to help children with limited verbal skills learn to
communicate. PECS may be used at school and home in conjunction with TEACCH, Applied
Behavior Analysis and other educational strategies.]
Beytien, Alyson (2004).
Family to Family: A Guide to Living Life When a Child is Diagnosed with an Autism Spectrum Disorder
DVD. Higganum, CT: Starfish Specialty Press.
Bruey, C.T. (2003).
Demystifying Autism Spectrum Disorders: A Guide to Diagnosis for Parents and Professionals .
Woodbine House.
Cafiero, J.M. (2005).
Meaningful exchanges for people with autism: An introduction to augmentative
& alternative communication. Woodbine House.
DuCharme, Raymond and Gullotta, T.P. (Editors).
Asperger Syndrome: A Guide for Professionals and Families .
New York: Springer Publishers.
Glasberg, Beth. (2005).
Functional Behavior Assessment for People With Autism: Making Sense of Seemingly Senseless Behavior.
Bethesda, MD: Woodbine House.
Journal of Autism and Developmental Disorders. Available from Plenum Publishing
Corporation, 800-221-9369 or
http://www.wkap.nl/
Mesibov, Gary B., Shea, V., & Schopler, Eric. (2004).
The TEACCH Approach to Autism Spectrum Disorders .
New York: Springer Publishers. [Handbook that explains the philosophy
and methods of this program used in some public schools].
O’Brien, M., & Daggett, J.A. (2006).
Beyond the Autism Diagnosis: A Professionals's Guide to Helping Families .
Baltimore, MD: Brookes Publishing.
800-638-3775.
Maurice, Catherine, Green, G., and Luce, S.C. (Editors). (1996).
Behavioral
Intervention for Young Children with Autism: A Manual for Parents and Professionals.
Austin, TX: Pro-Ed. 800-897-3202. [A how-to
manual for families starting a home teaching program using Applied Behavior Analysis.]
Richman, Shira (2001)
Raising a
Child with Autism: A Guide to Applied Behavior Analysis for Parents. London: Jessica
Kingsley Publishers. [Discusses toilet-training, refusal to eat certain foods,
dressing and community outings, and has an overview of ABA theory.]
Volkmar, F.R., & Wiesner, L.A. (2003)
Healthcare for Children on the Autism Spectrum: A Guide to Medical,
Nutritional, and Behavioral Issues
Wiseman, Nancy (2006).
Could It Be Autism?: A Parent's Guide to the First Signs and Next Steps.
[Explains how to find out if your child is developmentally delayed as early
as four months of age.]
Autism Information
Center at Centers for Disease Control and Prevention
800-311-3435
Autism Society of America
800-328-8476
Autism Treatment Network
503-783-2710
Center on
Positive Behavioral Interventions and Supports (PBIS)
Center for Implementing
Technology in Education (CITEd)
Cure Autism Now
888-828-8476
The
Family Center on Technology and Disability
Indiana Resource Center for
Autism
812-855-6508
Interactive Autism Network
MAAP Services for Autism & Asperger
Syndrome
219-662-1311
National Institutes of
Health
Autism Research Network
O.A.S.I.S. Online Asperger
Syndrome Information and Support
Professional Development in
Autism Center
206-543-4011
Yale Developmental
Disabilities Clinic
A publication of the National Dissemination Center for Children with Disabilities
NICHCY
P.O. Box 1492
Washington, DC 20013
E-Mail:
nichcy@aed.org / Web:
www.nichcy.org
1-800-695-0285 (V/TTY)
Publication of this document is made possible through a Cooperative
Agreement between the Academy for Educational Development and the Office of Special
Education Programs of the U.S. Department of Education. The contents of this document do
not necessarily reflect the views or policies of the Department of Education, nor does
mention of trade names, commercial products, or organizations imply endorsement by the
U.S. Government.
This information is in the public domain unless otherwise indicated by
brackets. Readers are encouraged to copy and share it, but please credit the National
Dissemination Center for Children with Disabilities (NICHCY).
Brackets indicate information added by AutismWeb.com.
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