Ryan is a healthy, active
two-year-old, but his parents are concerned because he doesn’t seem to
be doing the same things that his older sister did at this age. He’s not
really talking, yet; although sometimes, he repeats, over and over,
words that he hears others say. He doesn’t 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, as he’s started throwing a tantrum whenever his routine has
the smallest change. More and more, his parents feel stressed, not
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 autism, one of the five disorders listed
under an umbrella category of “Pervasive Developmental Disorders”—a
category that’s often referred to as simply the “autism spectrum.”
As painful as this is for his parents to learn, the early intervention
staff encourage them to learn more about the autism spectrum. 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.
Each of the disorders on
the autism spectrum is a neurological disorder that affects a child's
ability to communicate, understand language, play, and relate to others.
They share some or all of the following characteristics, which can vary
from mild to severe:
Communication
problems (for example, with the use or comprehension of
language)
Difficulty relating to people, things
and events
Playing with toys and objects in
unusual ways
Difficulty adjusting to changes in
routine or to familiar surroundings and
Repetitive body movements.²
These characteristics are typically evident before age 3.
Children with autism or one of the other disorders on the autism
spectrum can differ considerably with respect to their abilities,
intelligence, and behavior. Some children don’t talk at all. Others use
language where phrases or conversations are repeated. Children with the
most advanced language skills tend to talk about a limited range of
topics and to have a hard time understanding abstract concepts.
Repetitive play and limited social skills are also evident. Other common
symptoms of a disorder on the autism spectrum can include unusual and
sometimes uncontrolled reactions to sensory information—for instance, to
loud noises, bright lights, and certain textures of food or fabrics.
(Return
to top)
What are the Specific
Disorders on the Autism Spectrum?
There are five disorders
classified under the umbrella category officially known as Pervasive
Developmental Disorders, or PDD. As shown below, these are:
Although there are subtle differences and
degrees of severity between these five conditions, the treatment and
educational needs of a child with any of these disorders will be very
similar. For that reason, the term “autism spectrum disorders”—or ASDs,
as they are sometimes called— is used quite often now and is actually
expected to become the official term to be used in the future (see the
section below called "A Look at ASD Diagnoses in the Future").³
The five conditions are defined in the Diagnostic and Statistical
Manual, Fourth Edition, Text Revision (DSM-IV-TR) of the American
Psychiatric Society (2000). This is also the manual used to diagnose
autism and its associated disorders, as well as a wide variety of other
disabilities.
At the moment, according to the 2000 edition of the DSM-IV, a diagnosis
of autistic disorder (or “classic” autism) is made when a child displays
6 or more of 12 symptoms across three major areas:
social interaction (such as the
inability to establish or maintain relationships with peers
appropriate to the level of the child’s development
communication (such as the absence of
language or delays in its development), and
behavior (such as repetitive preoccupation with one or more areas of
interest in a way that is abnormal in its intensity or focus).
When children display similar behaviors but do not meet the specific
criteria for autistic disorder, they may be diagnosed as having one
of the other disorders on the spectrum—Aspergers, Rett’s, childhood
disintegrative disorder, or PDDNOS. PDDNOS (Pervasive Developmental
Disorder Not Otherwise Specified) is the least specific diagnosis
and typically means that a child has displayed the least specific of
autistic-like symptoms or behaviors and has not met the criteria for
any of the other disorders.
Terminology used with autism spectrum disorders can be a bit
confusing, especially the use of PDD and PDDNOS to refer to two
different things that are similar and intertwined. Still, it’s
important to remember that, regardless of the specific diagnosis,
treatments will be similar. (Return to Top)
According to the National Institute of Mental Health (NIMH)
and the Centers for Disease Control and Prevention (CDC), some form of
autism affects 2 to 6 of every 1,000 children, with the most recent
statistic being 1 in 110.4 ASDs are four times more common in boys
than in girls, although Rett Syndrome has only been diagnosed in
girls.5
The causes of autism and the other disorders on the
spectrum are not known. Researchers are currently studying such areas as
neurological damage and chemical imbalances within the brain.6
A Look at ASD Diagnoses in the Future
In early 2010, the American Psychiatric Association released draft
revisions to its Diagnostic and Statistical Manual of Mental Disorders
(DSM-5) and invited comments from both professionals and the general
public. The final and official fifth revision of the DSM is expected to
be published in May 2013.7
When published, the DSM-5 is expected to affect how autism and
associated disorders are diagnosed. Among the proposed revisions are:
changing the name of the diagnostic category to
Autism Spectrum Disorders;
including Asperger Syndrome, Childhood
Disintegrative Disorder, and PDDNOS under the diagnosis of Autism
Spectrum Disorders, rather than defining them separately and a bit
differently, as is now the case;
removing Rett Syndrome from the DSM entirely (and,
thus, from the autism spectrum).8
All this is to say...stay tuned. The criteria for
diagnoses of ASDs are in the process of changing.
(Return to Top)
Yes, there
is a lot of help available, beginning with the free evaluation
of the child. The nation’s special education law, the Individuals with
Disabilities Education Act (IDEA), requires that all children suspected
of having a disability be evaluated without cost to their parents to
determine if they do have a disability and, because of the disability,
need special services under IDEA. Those special services are:
Early intervention: A system of services to support infants and
toddlers with disabilities (before their 3rd birthday) and their
families.
Special education and related services: Services available through the
public school system for school-aged children, including preschoolers
(ages 3-21).
Under IDEA, children with a disorder on the autism spectrum are usually
found eligible for services under the category of “autism.” In the fall
of 2005, more than 160,000 school-aged children (3-21) received special
education and related services in the public schools under the “autism”
category.9IDEA specifically defines “autism” as follows:
.....a developmental disability significantly affecting verbal and
nonverbal communication and social interaction, generally evident before
age three, that adversely affects a child’s educational performance.
Other characteristics often associated with autism are engaging in
repetitive activities and stereotyped movements, resistance to
environmental change or change in daily routines, and unusual responses
to sensory experiences. The term autism does not apply if the child’s
educational performance is adversely affected primarily because the
child has an emotional disturbance, as defined in IDEA.
A child who shows the characteristics of autism after age 3 could be
diagnosed as having autism if the criteria above are satisfied. [34 CFR
§300.8(c)(1)]
To have a child evaluated to see if he or she has a disability,
including one on the autism spectrum, or to access early intervention
services for a child up to his or her 3rd birthday, we recommend
consulting NICHCY’s
State Resource Sheet for your state. You’ll find a
listing for early intervention under the first section, State Agencies.
The agency listed there will be able to put you in contact with the
early intervention program in your community.
To have a school-aged child evaluated for an ASD or to access special
education services for a school-aged child, we recommend getting in
touch with your local public school system. Calling the elementary
school in your neighborhood is an excellent place to start.
(Return to Top)
Early diagnosis and intervention are very important for children with an
ASD. As we’ve mentioned, under IDEA children with an ASD 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 ASDs 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 an ASD 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 an ASD, 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 a disability on the autism
spectrum grow to live, work, and participate fully in their communities. (Return to Top)
Learn about autism spectrum disorders—especially the
specific disorder of your child. The more you know, the more you can
help yourself and your child. Your state’s Parent Training and
Information Center (PTI) can be very helpful. You’ll find your PTI
listed on NICHCY’s online
State
Specific Information (under
“Organizations Especially for Parents”). We’ve also listed organizations
at the end of this fact sheet that can help you become knowledgeable
about your child’s disorder.
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 a
melt-down 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 (AT) 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 child’s 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.
(Return to Top)
Learn more about the autism spectrum. Check out the research on
effective instructional interventions and behavior on
NICHCY’s web site.
The 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 and 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 professionals (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.
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.
(Return to Top)
9U.S. Department of Education. (2007). 27th annual report to Congress
on the implementation of the Individuals with Disabilities Education
Act, 2005 (Vol. 2). Washington, DC: Author.
A publication of the National Dissemination Center for Children with Disabilities NICHCY,
June 2010 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.
.
Dr. Volkmar is a child psychiatrist who helped create the medical
profession's diagnostic criteria for autism and PDD.
Explains how to find out if your child is developmentally delayed as
early as four months of age and what to do if he is.
.
Wiseman, of First Signs, takes parents beyond the
diagnosis into handling health care, insurance and educational concerns.]